Here we go again!

Yes, I had my first dose of carboplatin this morning.  It will become a regular thing - every week for three weeks, then one week off, then start over.  Here I am, waiting for all the orders to get sorted out so I can have my infusion, which takes about 30 minutes.  It's a far cry from the six hours or so I spent in the chair when I did my first chemo treatments.  Rick and Christine sat with me...I'm never ever alone for chemo thanks to the loving support of my family.

 

My blood counts were a little screwy today - both white and red counts were low and I'm officially anemic plus my protein level was low.  It does explain why the energizer bunny isn't feeling very energized.  More beef! 

And I got a copy of the PET/CT scan report...ick.  I have to say it was uglier than I expected.  Carboplatin needs to harness this beast. 

On a more pleasant note, we had a fabulous Christmas with our whole family.  Every year, anyone spending the night wherever I do, gets new jammies from Santa Jammy.  I usually buy for everyone (including myself) but this year I was told that someone else was taking care of my Santa Jammy.  And someone did...



Yes, indeed!  Remember Ralphie in the "deranged Easter bunny" suit in A Christmas Story?  Yup, you got it.  They had me walk down to the landing overlooking the living room, and the tv had been queued to the same scene in the movie where Ralphie, looking pathetic, agrees that he wants to take it off.  We all laughed so hard we were in tears. 

If laughter cures, I should be seeing a Christmas miracle!

It's Christmas Eve...

and I want to wish all of my family, friends and supporters a joyous Christmas filled with family, fun, food, and all the things that make the season special for you.

We are heading to Paul and Christine's for a family Christmas Eve celebration.  Then we'll spend the night so we are bright-eyed and bushy-tailed for the Christmas morning gift opening extravaganza.  If we are lucky, the grandkids will abide by their mom's "command" that they stay in bed until 6 a.m.  If it happens, it will be a Christmas miracle!

A little update on me...I had a PET/CT scan on 12/19 and it lit up like a Christmas Tree.  My oncologist said that carboplatin needs to be the Grinch that puts out the lights on that unwelcome tree.  Chemo starts early on 12/26 - we have to be there at 8:15 a.m.  And there will be three weekly treatments followed by one week off.  Rinse and Repeat.   My port site has healed  nicely so no more troublesome blood draws from uncooperative veins.  I am currently scheduled for a brain MRI on 1/22 to check the status of the brain mets.  Hopefully, they are gone.  If there are any remnants, the Radiation Oncologist may zap them indivually.  I'm not having any symptoms, so hopefully they are gone.  Also, carboplatin may cross the blood brain barrier, so it may help, too.

Thanks to everyone for your support, prayers, love, meals, cards, emails and gifts during this year.  It's been hard on everyone, mostly on my husband and kids, and we're hoping for some relief in 2013.  But I couldn't have gotten through it all without the support of all of you. 

Merry Christmas to all!

We have a new plan...

and I will start carboplatin only on December 26th.  I saw my oncologist this morning and I was reminded why I like her so much.  She is flexible, smart and personable.   I am doing just carboplatin because single agents are the standard for metastatic breast cancer.  And it makes sense - if you do a combo and you have progression, you don't know which drug failed.  So I'll be doing carbo once a week for three weeks, one week off, rinse and repeat.  Because I will receive smaller doses at a time, it should be quite tolerable.  We'll do tumor markers at the beginning of each new cycle, and I'll have a PET/CT scan every three months unless there is a rise in tumor markers.  I'm also having a new baseline PET/CT on December 21.  If I can coordinate it with my Radiation Oncologist, I'm hoping to have a brain MRI on the same day. 

Carboplatin passes the blood/brain barrier, so that's another good reason to use it this time.  And back in May, there was a clinical trial using carboplatin and generic actos.  So we are going to add the actos to the mix and I'll stay on it to see if it helps.  This drug just got a black box warning from the FDA stating that it can cause bladder cancer if you use it for more than a year, so we'll pay attention to the length of time I use this drug.  If 11 more months come along and I'm still doing this protocol, we'll probably have to skip the actos.  But then, this would be really good news and I'd probably be in regression.  We'll cross that bridge when we get there.

I also visited my surgeon and I'm now scheduled to have the port placed next Monday morning.  It was good to hear my Dana Farber nurse tell me how much confidence she has in this particular surgeon.  I know a lot of people who have ports placed and have trouble with them, but my first one never bothered me for a second.  Unfortunately, she can't put it in the same vein so she'll have to tip my head back to get at another vein.  I'll be out - who cares?

So now I can plan the next few months including a trip to Florida, probably in February, to visit our friends who will be soaking up the sunshine.  I'm sure I'll be ready for some sun and warmth by then. 
And more importantly, I can enjoy Christmas with my family and friends!

December is going to be a busy month!

Yes, indeed it is.  I have an appointment with Dr. Walsh at Dana Farber in Londonderry on Dec. 12th at 8:30 a.m.  Then I am meeting with Dr. Looseman in Derry at 10:30 to make a date for a new port (she's going to remind me that she suggested I leave it in a while for luck).  I'll have that surgery as soon as practical.  I have an appointment with Dr. Zhou, the radiation oncologist, in Londonderry on Dec. 19.  She has recommended I have a brain mri sometime at the end of the month.  I'll probably start chemo - carboplatin and Gemzar - in the next few weeks.  I'm going to lobby for right after Christmas but will defer to Dr. Walsh's opinion on this.  I think she'll say it's ok, it won't make that much of a difference.

And then there is Christmas...the tree is arriving today from Weirs Tree Farm in Colebrook, NH.  The plan had been to drive up there with our friends Ann and Jack, spend the night in a nice hotel and cut the tree ourselves the following day.  But when the brain mets made their appearance, I decided to just order the tree and have it shipped.  I'm sure it will be beautiful, as every tree we've had from Weirs has been.  Allison and her roommate Joe are coming Thursday evening to "deck the Halls"!

Christmas shopping has begun - mostly online from Amazon.  I love online shopping as it doesn't test my endurance and it's weather-proof!  On the other hand, a little walking around is good for me.  Yesterday I spent a couple hours actually shopping.  It was time for some holiday area rugs, a few new ornaments, and a few gifts. 

And this Friday night, we have tickets to see Mummenschanz in Boston.  This show has been around forever and a tv commercial caught Rick's eye.  So he went online, bought tickets, made dinner reservations and we have a date. 

And oh, before I forget...remember that cute wig that I got just before Thanksgiving? I told the stylist that I had a small noggin but she insisted that I measured as "average."  Well, when my hair fell out, that wig was way too big.  So I met with her again this week and I now have a completely different style...brunette, straighter, and the only choice she had for me.  Not what I really wanted but it was 40% off and she is able to return the other one.  She had a whole new line of wigs that arrived that day, but not a single small wig.  And the catalog had one - a long bob with bangs.  Ummm, nope.  I'll post a picture after I fully recover from the nasty sinus infection I've been battling for more than a week.  I'm feeling quite a bit better and I actually slept until 7 this morning.  Antibiotics rock!  Cough med with codeine rocks even more...lol!  Better living through pharmaceuticals is my new mantra!

Brain Rads Results, Thanksgiving, and Vegas Baby!

I've been pretty busy over the past couple of weeks, finishing brain radiation, celebrating Thanksgiving with the family and enjoying a trip to Las Vegas.  Considering the fact that I was staggering like a drunk person when I started rads, I'm pretty happy with my recovery.  I was in such a state of confusion that I couldn't even make popcorn - something I've done since I was ten years old.  And the night I tried to fill my pill bottle...oh my, I made such a mess of it that it took an hour for my son Joe to help me straighten things out!  But I am back!!!  I am happy to say that I am almost fully functional - balance has improved dramatically, I can make that popcorn, my keyboarding skills are almost back to normal, and I made homemade spaghetti sauce last night.  And I'm back to driving so I was able to do a little grocery shopping.  My glucose levels are back down to earth after reaching stratospheric levels while on steroids.  I have to admit seeing 400 on that meter was darn scary!

Speaking of food, now is a good time to say a big "thank you so much" to you "Meal Train" friends.  It was so generous of you all, every meal was absolutely wonderful and you spared me lots of take-out, for which I am eternally grateful.  And so are Rick and Joe!  My handwriting still sucks, so I probably won't manage to send written thank you notes, but do know that we recognize how lucky we are to have such wonderful, caring and helpful friends and family.

I don't seem to have suffered any real side effects from the rads except for the promised hair loss.  It's mostly gone again and it's questionable whether or not it will ever grow back.  Christine took me to a wig shop in Acton, made a selection and picked it up on Tuesday (right before the fallout).  Unfortunately, it turns out that it's too big for my little bald dome so I'm going back to the shop tomorrow and we'll try again.  I told Peg (the stylist) that I needed a petite one but she measured and said I measured as average.  I should have told her I had a lot of hair.  That wig fit ok on Tuesday and by Thursday I was swimming in it and it wouldn't stay in place.  The good news is she didn't cut it and she can send it back.  The bad news is that it won't be the same style because she sold me one from a line of wigs on closeout and so I'll have to choose from a whole new assortment.  I've had more looks than a chameleon in the past year and a half!  Here is the latest look:

We had a lovely Thanksgiving Day with our family.  We enjoyed tortiere (French Canadian pork pie) around 11 at Ron and Christine's home, then we all headed to Paul and Christine's for the main event.  And it was quite a meal - 23 pounds of beautiful turkey, stuffing, mashed pots, gravy, sweet potatoes, parsnips, cranberry sauce, homemade bread by Paul's uncle, onion relish, peas with pancetta and shallots, French silk pie and chocolate pecan pie!  It was an awesome meal prepared by Christine and Paul's parents.  I was pretty much relegated to a bar stool in the kitchen and a couple of chopping duties.  I don't think I've ever done less for a holiday meal and I thank everyone else for picking up my slack. 

On Friday morning we left for our trip to Las Vegas.  Our mission was to scatter my mom's ashes on Mt. Charleston overlooking the city, take a hot air balloon ride, see a couple of shows, and win some money.  All missions accomplished except for that last one.  We had a great time but Vegas took our money.  And I found out that I have a lot less endurance than in the past!  Haha, I thought I could go to Vegas and walk that Strip like I used to, but I have to concede that the Strip beat me up.  Everything is so big and so spread out that you can walk a quarter mile just crossing the street!  Escalator up, cross over the pedestrian walkway, escalator down, then another quarter mile to get into the casino.  I can see why the older generation goes to Fremont St (downtown) because it's so much more contained and it's actually possible to walk out of one casino and into the next one rather easily.  The Fremont Experience is quite good and I recommend anyone visiting the area should check it out.  Here's a link for your perusal:

http://www.vegasexperience.com/

We stayed at the Aria at City Center, a relatively new property very convenient to the Bellagio, Monte Carlo and NYNY.  The hotel rooms make use of  technology in a way I've never experienced before.  There was an iPad on the bedside table with connectivity to every system in the room.  It controlled drapes, lighting, temperature, audio and video.  You could use it to control bedtime and wakeup settings like turning everything off at night or opening the drapes in the morning - very cool!  Here's a link to the room details at the hotel's website, including a link to a virtual tour of a room.

http://www.arialasvegas.com/hotel/rooms-suites

We got this hotel for an excellent price considering its 5 star rating, and it didn't disappoint.  It really is the most luxurious, most technology-forward hotel we've ever booked.  I used Hotwire and didn't know what hotel it would be until I paid and when Hotwire revealed it was Aria, I knew we'd be delighted. 



On Sunday we drove to Mt. Charleston to find a good spot to scatter mom's ashes.  The mountainous terrain didn't offer up many good spots, but we found a place at the historic site of an old ski tow at 7600 ft.

Click on the link below and then click on "slideshow" just above the first picture on the left.

https://picasaweb.google.com/113066747731512031910/VegasHotAirBalloon?authuser=0&feat=directlink

Monday morning, bright and early, our pilot Kevin picked us up at the hotel and transported us to the pre-flight meeting place...wisely, a Starbucks.  It's almost impossible to get a cup of coffee in the hotel or casino at that time of the morning, except as we learned, at one of the bars.  Thank goodness!  Once we arrived at the launch site, the balloon was unloaded, inflated with giant fans and then the air was heated to make it "rise."  We entered the basket - no easy trick for me.  It had two foot holes, one low and one high.  My leg wasn't long enough to reach the higher hole so Rick helped me up to the edge of the basket and I sort of "fell" in...lol! We lifted off and rose to about 4000 ft during our 1 hour 12 minute flight.  There was very little wind and the pilot kept trying different altitudes to find a breeze, but it wasn't to be.  So we just floated for 2.2 miles and came down in a lot similar to the one where we departed.  Once the balloon was repacked and stored, we had a champagne toast and Kevin told a few stories. 

I LOVED the balloon ride, it was so calm and peaceful and I wouldn't hesitate to do it again.  Maybe I'll just have to take a ride in one of our local balloons.

We saw two shows - Blue Man Group and Cirque Du Soleil's Zumanity.  We thought Blue Man Group was ok and perhaps overpriced.  Zumanity was funny, sexy, and everything we've learned to expect from a Cirque show. 

We had a lovely dinner at Vic and Anthony's in the Golden Nugget on Sunday night.  TripAdvisor rates it as #6 out of 2180 restaurants and it was the highest rated steakhouse.  It did not disappoint us - the steaks were fabulous and so were the scalloped potatoes.  On the other hand, we ate lunch on Monday at Todd English's Olives.  Rick had a burger that was good, his fries were average.  I ordered a brick oven-roasted free range chicken that was dry and unseasoned.  I ate just a small portion of the meal and commented to the waiter on its lack of flavor.   They comp'd my meal, which was appropriate, all things considered. 

Vegas casinos are full of amazing things that you just won't see anywhere else.  Here are a few pictures of things that caught our attention:

 

Yes, this is a chocolate dragon.  Jean Philipe Patisserie at Bellagio and Aria had the most beautiful chocolate sculptures and an amazing chocolate fountain.

 

 

 



This is a chocolate santa sitting in a chocolate chair!

 

Yup, these 3 pictures are of the biggest chocolate fountain I've ever seen.



 

Our Delta flights were all on time and lacking any drama.  Actually, they offered in Boston to check carry-ons because the flight was full so we checked my bag (we had already checked the bag with mom's cremains on advice from the funeral director).  On the return trip, they once again offered to gate check the carry-ons through to Boston, so we didn't have to deal with them.  Our flight into Boston arrived about 25 minutes early and our shuttle service was waiting for us.  It was good not to have to make the drive ourselves as we were tired. 

The trip was awesome but I was ready to be seated in my recliner!

Brain radiation doing ok

Just a quick note to let you know that I seem to be tolerating whole brain radiation fairly well. I am still struggling with typing and my balance is not great. But I am hanging in there. The fatigue has found me along with the steroid "can't sleep" issue. But I am coping and Rick is ever watchful of my every move. I managed to put away some laundry while he is off to the store. It made me feel good to be able to do something productive.

A scary time...

We went to the ER on Monday morning because I was having neurological problems. A brain PET scan showed that I have brain mets. So I started whole brain radiation on Wednesday -l0 treatments. I will be bald again, probably for a long time if not forever...hair is overrated...lol. I will provide more details when I can type better.

Some family pictures from the luncheon after my mom's funeral

Family Reunion


Thanks to my son-in-law Paul for being the photographer - these are fabulous!

Time for a little concern

I had an appointment with my Dana Farber oncologist late Wednesday afternoon and it appears the trial drug is not a magic bullet for me.  While all my other lab results are really good except that I am a little bit anemic, my tumor markers have risen from 101 to 126.  It's a disturbing trend, and there has not been any downward turn at all with this drug.  I've been on it for about 9 weeks.  I go back again on November 16th; and unless my tumor markers have reversed direction, it will be time to discuss the next treatment plan.  I'm disappointed, but it is what it is. 

The next likely treatment plan will include carboplatin.  The platinum drugs have been proven to be effective against ovarian cancer, and triple negative breast cancer is similar genetically.  It won't be an easy regime - hair loss, nausea, low blood counts - pretty much the same as last summer's Adriamycin, Cytoxan and Taxol treatment.  But I'd like to try and give it a knockout blow while I have the physical and emotional strength to do it. 

It's possible Dr. Chen may have other ideas.  There are many clinical trials and she may think that one of them is a good fit.  So we'll have to talk about the pro's and con's of my options.  In the meantime, I'm in a bit of a scary holding pattern. 

Camille Jeanne Haven

August 20, 1929 - October 22, 2012

My mom passed away peacefully last night at the hospice facility in Merrimack, NH. 

For those who hadn't heard, we arrived back home last Thursday (3 days earlier than planned) because Mom suffered a massive aneurysm on Wednesday morning.  Allison and Christine rushed to the hospital, then kept watch over her until we could get home Thursday evening.  On Friday we moved her to a hospice facility - those people really are angels - where she died late last evening.   We were all there for her. 

The picture was taken two years ago at Powell Gardens, just east of Kansas City.  It's a beautiful place and she enjoyed going there.

I also took this picture of the inside of the chapel, with mom sitting in one of the pews.

Peace be with you, mom.





Entering the "no cancer zone"...Day 1 in Long Beach

We had a nice, uneventful (the best kind!) of flight from Boston to Cincinnati then on to Los Angeles.  Our luggage was almost the first on the carousel, we boarded the bus to National and picked out an almost new Ford Flex - an interesting choice with lots of room for our luggage.  And lots of room for passengers (which came in handy today when we were able to squeeze three of us in the middle seat and a wheelchair in the back storage area.   It's quite comfortable, lots of technology and gets really crappy gas mileage, which is a pretty big deal here in SoCal where regular unleaded is averaging close to $4.68 a gallon!!!

After hitting the sack at about 10 p.m., waking up at 4 a.m. (gotta love jet lag) then rolling out of bed for real at about 6:30, we had breakfast then took a nice walk to Downtown Disney.  It's about a mile away and we enjoyed the walk, especially since we knew we weren't going to be part of the crowds that were heading into Disneyland itself.  The hotel "proudly" serves Starbucks coffee, which I really dislike, so we found a nice coffee shop and enjoyed a cappaccino.  The good news is that the coffee situation will improve dramatically on Thursday when we can look forward to some really good Kona coffee!

We met up with Rick's family and headed to Mimi's Cafe for lunch.  It was great to see everyone and catch up on family news.  The brothers haven't been together in several years, so it was a great reunion. 

Ed, Rick and Bob

 





Bob, Jeannette and Rick

After spending a couple of hours visiting with Bob and Sheri, we drove to Newport beach for dinner.  We found a restaurant on Newport Pier, had a cocktail while enjoying a beautiful sunset and dinner. 

Those are oil rigs just to the left of the sun

 

The pet pelican greeted us as we walked into the restaurant

The horse is in the stable!

Aloha my friends!

We're getting ready to leave this morning for our trip to Long Beach, CA to visit Rick's family, then we leave on Thursday for the Big Island of Hawaii, so today is the last of any "cancer talk".  The trip will be mostly a "no cancer" zone, especially once we board the plane on Thursday. 

I had a CAT scan on Friday and after hanging around Dana Farber all day waiting for the results, at 4:45 I learned that my cancer is stable.  Woohoo, the horse has been corralled a bit (the head is out by just a nose), the clinical trial drug seems to be at least somewhat effective, and I can go off on vacation knowing that things are generally good.  I will stay in the trial until the next scan - which will be in about 8 weeks.  The scan did show a 4% increase in my tumor load.  But fortunately, my load is small so 4% of not much is still not much.  My tumor markers stayed steady at 101 (normal is below 38 and it was 101 two weeks ago) but my CEA actually went down from 0.8 to 0.5 (normal is below 2.5).  If this number is meaningful at all, it would seem to indicate the drug is doing something good.  Dr. Chen was on vacation and I didn't address the question with her PA.  Next time.

So now this blog will, once again, become a travelogue.  You can look forward to stories and pictures of our LA/Long Beach/Catalina Island adventures followed by our nine days in beautiful Hawaii.  Our son Ron and his lovely partner Christine will be joining us in Hawaii, so we expect to have a fun time and do a few things we might not do if we were there on our own.  One big experience will be witnessing the Ironman Competition in Kona on 10/13.  Many of the world's finest athletes will be competing and this is probably the biggest event in Kona each year.  Fabulous beaches, the volcanoes, the scent of plumeria, Kona coffee and beautifully-presented food - looking forward to it all.  And we'll try to take in a little of the old authentic Hawaiian culture.  This is, I believe, our sixth trip to the islands so you know we love Hawaii and will enjoy every minute. 

I think I'm going to try parasailing!!!

Mahalo!!!

Reflections on the past and hope for the future

Today marks the one year point since I finished the hardest thing I've ever done in my life - dose dense chemo.  I was less fearful of the surgery that removed both breasts and fourteen lymph nodes.  I have to admit I surprised myself and maybe even my family - I thought chemo would "take me down" and I'd be so sick from it that life would be just miserable.  But it wasn't nearly as bad as I had expected it to be.  Mind you, it was no picnic.  But it was "doable" - that word I hated to hear people use when talking about breast cancer treatment.  Yeah, it was doable.  Getting on with life after losing limbs in a war is "doable", too.  The human spirit is amazingly resilient and somehow, people tend to get on with their lives, one day at a time, regardless of how daunting it might first appear.  And the love of my husband, children, grandchildren and my fabulous dear friends made it all tolerable.

Of course, at this time last year I had no idea that I'd be living the rest of my life with the thought of endless treatment for this beast called breast cancer.  That call this May when my oncologist shared the bad news that my cancer was back and had metasticized to my lungs - well, that was not what was "supposed" to happen.  I had fought a good fight, done everything to beat back the cancer, and I was planning to get on with my life, like most of my ancestors who were "short stocky French women" who lived forever.  My great-grandmother as well as my grandmother lived into their 90's.  One of my aunts lived to be 102.  Longevity is in the gene pool.  My excellent Dana Farber radiation oncologist told me that with all the treatment I had endured, my chances for another recurrence had been reduced to 10%.   So, what do they really know?

It turns out, they don't know as much as we'd all like to think about who will or will not beat back breast cancer.  All the statistics, and there are lots of them, don't really mean much.  When the chips are down, because they don't know what causes breast cancer and they don't know what cures breast cancer, it's all a really big crapshoot.  Let's face it - I had an 87.5%  chance of not getting it in the first place, a 70% chance that I would not get distant mets if I didn't undergo chemo, and a 90% chance that I would not have a recurrence after completing treatment.  And oh, triple negative breast cancer is supposed to be more prevalent in women under 50 and minorities.   Not feeling all that lucky at this point! 

The recent announcement from MD Anderson - their "moon shot" program - now that gives me hope for the future.  They announced their intention to cure several types of cancer before the end of the decade.  Triple negative breast cancer is one of those targeted cancers.  That is great news!  Here's a link for those of you who may not have heard or read about it:

http://cancermoonshots.org/moon-shots/breast-ovarian/

I think I'm going to contact them and offer tissue samples from my cancer for their research studies.  I want to contribute, I want to be a part of this program that may, ultimately, be my lifesaver.  I want to be able to look back, 20 years from now, and tell my story about how I beat metastatic triple negative breast cancer.
___________________________________________________

And now, for a little update on me and the clinical trial with ARQ 197. 

The drug is treating me well - no significant side effects other than I just can't eat really spicy food and I may have to admit to a little fatigue.  Not too bad.  If this drug is effective, I could take it the same way I take my diabetic meds - just another group of pills in my ever-expanding pillbox that keeps me going, almost normally.  No nausea, no hairloss, no pain, nothing I can't tolerate long term.

Last Friday, at my request, the oncologist included tumor marker testing along with my regularly-scheduled labs (complete metabolic panel and complete blood counts).  The CA27.29 test came back at 101 (normal is below 38).  This is the test we've been using since I first started this cancer journey, so we know it's a reliable indicator of what my sneaky cancer is up to.  In mid-August I was at 89, so I'm not overly concerned about 101.  I wasn't on any treatment for a couple of weeks, I've been on ARQ 197 for just three weeks, and it's probably too soon to expect any significant changes. 

The surprise test was the CEA, which tests for proteins given off by carcinoembryonic antigens.  "Carcinoembryonic" reflects the fact that CEA is made by some cancers ("carcino-") and by the developing fetus ("-embryonic").  We know there is no embryo developing in my system...lol  It's used to measure treatment progress for a few cancers - colon, breast, stomach, lung and ovarian.  It can be elevated if you have liver or other intestinal problems.  The normal range for CEA is below 2.5 (unless you are a smoker, which I am not).  My result came back at 0.8.  I think this is really good news, but I need some further clarification.  I have no frame of reference for this test in my own specific situation.  I've discussed this with some of my "sisters" on breastcancer.org who have metastatic disease.  Some of them have CEA numbers ranging from 20 to 2000+.  So, 0.8 gives me hope.

Is it possible that ARQ 197 is working for me?  It's not unusual for the CA27.29 to rise while in the midst of chemo treatment, then fall a few weeks after treatment is finished.  Is it possible that this clinical trial drug is turning off c-met (a receptor tyrosine kinase implicated in tumor cell migration, invasiveness, and proliferation, and it is abnormal in many human cancers)?  Is it possible that my CEA score is accurately reflecting what's happening at the most basic level of my cancer cells? 

I will have a CAT scan on 10/5.  It will reveal the truth - has the cancer regressed, stabilized or progressed?  We'll have some answers very soon!  And hoping for good news!

Some interesting information on my clinical trial drug

http://www.arqule.com/res/

Here's a little background information on ARQ 197.  On this page there is a video (look for "watch animation") that explains how the drug works.  It's a pretty good visual and the lingo is not too technical.

Just checking in

It's a beautiful fall day here on Arlington Pond.  I love that I can sit in my LazyGirl chair and look out on the lake as if I were sitting right outside.  It's such a beautiful view.  And this time of year, the waterfowl have taken over the lake.  It's cool enough that we see just an occasional boater or jet skier, although this weekend may bring more activity as the temps rise back into the low 80's.  It's very peaceful, and I can start to see hints of color in the leaves...won't be long now before the trees will be ablaze in fall colors.

I started my clinical trial drug eleven days ago, and I am happy to report that I seem to be tolerating it just fine.  My bloodwork was all perfect last Friday, and I don't have to go back until Friday, 9/21.  I've requested that a tumor marker test be added to the battery of labs that are routinely performed.  It should give us some idea of whether or not the drug is having any effect. 

And now I am looking forward to a big trip - we will be flying to LAX on 10/7 to visit Rick's family for a few days then on 10/11 we head to Kona, HI for nine beautiful days in our most favorite vacation state.  This is trip number six to the tropical paradise that is the Hawaiian Islands, and we never get tired of it.  If I ever win Powerball, I would take my whole family out there and we would stay until we got tired of it.  I suspect that it would take a long while!

Officially accepted into Clinical Trial

I will start my new chemotherapy tomorrow - ARQ 197 (tivantinib) as part of the Clinical Trial

http://www.dana-farber.org/research/clinical-trials/clinical-trial.aspx?tid=2726

http://www.clinicaltrials.gov/ct2/show/NCT01542996

I'll take 360 mg of the drug twice a day with my breakfast and dinner.  The only "caution" is no grapefruit or grapefruit juice.  It's amazing how many drugs are incompatible with that healthy fruit! 

Being on this trial will require regular trips to Dana Farber - every other week after the first few weeks.  They are going to get tired of seeing me!!!  And I get to stay on the trial drug for as long as it's effective.  So we're hoping for a nice long run with very gentle side effects.  Based on the documentation and what I've read, fatigue seems to be the biggest complaint.  Less than 20% of participants have problems with low blood counts and a list of other things, nothing too daunting. 

I feel like a pioneer!  There are just 40 participants in this trial and I get to be one of them.  I think they have expanded the size of the trial because initially, it was 26 and Dana Farber had just 2 slots.  I think the clinical trial world is ever-changing. 

I am very optimistic that this drug will be effective for me and hopefully, a future treatment for all triple negative breast cancer sisters. 

Keep your fingers crossed!

The clinical trial is open!

I got a call today from the Dana Farber clinical trial and ARQ 197 is officially open. I am going on Friday for all the pre-testing, and "day 1" should be a week from Friday assuming I pass all the testing. There is no reason to think I won't so that is really good news. This clinical trial is specific to metastatic triple negative cancer, my type. And it has already been tested with lung and liver cancer, and the results were good. I am anxious to begin treatment - it's a bit nerve-racking to be dangling out here knowing you have active cancer and not being on something. Oh yes, please do go back and look at how vehemently against chemo I was just about two years ago. Now I am worried if I'm not on something. My, how things have changed! From everything I've read, this chemo has relatively mild side effects. No hair loss, not much nausea, a little fatigue and the usual low blood level issues. With anemia comes fatigue. I'll have to check and see if I can take my pre-natal vitamins with this stuff. And life goes on...my grandson Alex is spending the night tonight. Tomorrow we are going to Odiorne Point State Park (which is a bit of a marine life exhibit) and then to Hampton Beach for some fun in the waves. The weather is perfect and I'm sure we'll have a great day. Next week I am going with Rick to Atlantic City for a few days. He has to be near Philadelphia so we are staying at Caesar's Palace on the Boardwalk, I'm going to enjoy the sun, surf, and slots while he is working. Poor thing, hardly seems fair!

Some good test results and pictures from my mom's birthday party

I just got a call from my oncologist's office and learned that my a1c is 6.0. Considering my new attitude about eating "all things in moderation", I'm quite happy with that result. And my CA27.29 (tumor markers test) came back at 89, which is two points lower than it was in July. More importantly, while it may seem that Xeloda wasn't doing much, it seems to have kept things more or less in check. Yesterday we had a little lake party to celebrate mom's 83rd birthday. It turned out to be a beautiful day, sunny and not too warm. Rick grilled some exceptionally good chicken thighs (did that taste have anything to do with the marinade I made???), we had fresh corn, caprese salad, Kraft Mac & Cheese (yeah, it's a family thing), fresh cukes, strawberry shortcake and some exceptionally yummy strawberries dipped in chocolate. There were lots of lake parties yesterday and our next door neighbors were no exception. So in the evening, they hosted a campfire, the kids toasted marshmallows and made smores, and we enjoyed the company. During the early evening, two hot air balloons passed right over our house. Usually they come across the lake, but last night they came more from south to north. Here are some pretty neat pictures:

The birthday girl!

Here they come!

This one was really low and we could see it was having a little trouble maintaining altitude.

I caught this one firing its engine as it passed right overhead.

Falling like a setting sun!

And oh yes, there was whipped cream shenanigans!

We have a plan!

I will be doing a clinical trial using ARQ-197. This trial is specific to metastatic triple negative BC, and I will be one of 26 in the US on this trial. ___________________________________________________________ www.clinicaltrials.gov/ct2/sho... ___________________________________________________________ ___________________________________________________________ http://www.ncbi.nlm.nih.gov/pubmed/20506063 ___________________________________________________________ The drug is administered in three week cycles, and I will take it orally twice a day...for as long as it works. This will work with our trip to Hawaii and so I am extremely happy that Dr. Chen agreed that this was a good one for me. It seems clinical trials are all about timing - showing up at the right time when a trial is opening or about to open and meeting the inclusion criteria. Lots of bloodwork and scans, but I see that as a good thing - someone is keeping very close tabs on this nasty beast. ___________________________________________________________ The trial should be starting in the next two weeks, so I will be waiting impatiently for the clinical trial nurse to call me with the details and answer any questions. My oncologist gave me a copy of the consent form with all the info about the trial, and it seems it's a pretty mild drug. The most common side effect is fatigue and the usual low blood counts. ___________________________________________________________ Ah, I found the real name of the drug - tivantinib...here is a link to a Phase III clinical trial that explains a little more about how it works: ___________________________________________________________ http://2020pharma.com/content/phase-iii-trial-selective-c-met-inhibitor-tivantinib-starts-enrolling-patients ___________________________________________________________ After our appointment, Rick, Christine and I went to Stoli in Brookline. We had found this place on one of our previous Dana Farber excursions and had a drink while we were waiting to meet our friends Ann and Jack at La Morra which is in the same general area. We loved the vibe of the place - the bartender is from Russia and we had a great conversation with her about Russian history and politics. It's a very small restaurant - maybe 12 tables or so and room at the bar for four. I expected the food to be hearty and earthy. But no, it wasn't like that at all. Rick had beef stroganoff and his was a little heavier. Christine had a delicious roasted chicken with mashed potatoes and the freshest veggies that looked like they came from the garden this morning. And I had lamb chops with the same veggies - the plate was beautiful and looked so appetizing!

No decisions just yet

I had a nice visit with Dr. Walsh and I had way more questions than she could answer. I emailed her my blog link and warned her it might give her a headache...lol So it's off to see Dr. Wendy Chen in Boston on Friday at 3 p.m. We talked today about some of the clinical trials and more standard chemo options. She asked me which one I favored, and I told her the MK-2206 was at the top of my clinical trial list. I asked her what she favored and she said she's leaning towards carboplatin with Gemzar (gemcitabine). This would be a tough therapy but not as bad as her other favorite, Ixabepilone (Ixempra). Some of the other clinical trials might be a problem as we have our trip to Hawaii planned in October, and we may not be able to work around the two weeks I'll be gone. Without input from Dr. Chen (so we could head in a completely different direction after Friday's appointment), my thought is to do MK-2206 and recheck when I get back from Hawaii. If it's working, we continue on. If it's not working, we go to the Carboplatin/Gemzar protocol. Then I'd need a port, the hair would go, and all the other "stuff" that comes with IV-chemo. It will be interesting to learn Dr. Chen's ideas on what should be the next steps. So, stay tuned!

I have a serious decision to make tomorrow, with the help of my oncology team and my family. I qualify for several clinical trials; and there are several standard chemo protocols that I could undergo. The first suggestion is carboplatin, with or without pioglitazone (Actos). Carboplatin has a good track record with triple negative breast cancer, so it was the first thing that popped in my mind after it was confirmed that Xeloda was not doing its job. It is administered via IV, so I would need another surgery to get a port. According to the information below, it's a once a month treatment. I would probably lose my hair again. http://www.drugs.com/mtm/carboplatin.html The pioglitazone is an interesting dilemma. I could take it and wouldn't need to take my metformin, which would sound like a reasonable alternative if it were not for today's report in Science Daily which states that Actos increases the chances for bladder cancer when taken for more than one year. It is unlikely that I would stay on it for more than a few months, so I won't rule it out at this point. http://www.drugs.com/mtm/pioglitazone.html Here is a Dana Farber research paper which discusses the use of pioglitazone and another diabetic drug in combination with a platin drug to fight metastatic cancer: http://www.dana-farber.org/Newsroom/News-Releases/Diabetes-drug-dramatically-boosts-power-of-platinum-chemotherapy.aspx ____________________________________________________________ The next option is ARQ-197. This Dana Farber-centered trial is using an oral chemo with a 21 day cycle to slow down the growth of the nasty cells. This one holds a lot of interest for me, because my rate of growth was 90%. Screamingly fast. http://www.clinicaltrials.gov/ct2/show/NCT01542996?term=arq197&recr=Open&rank=4 http://www.dana-farber.org/research/clinical-trials/clinical-trial.aspx?tid=2726 Here's a little more info on the drug and its effectiveness in non-small cell lung cancer: http://investors.arqule.com/releasedetail.cfm?ReleaseID=455781 I'm guessing that there would be no hair loss on this drug and I would not need a port unless it is combined with something else. That makes dosing easy and quality of life is somewhat important. I need to ask a lot of questions about the details that are currently available - results, side effects, etc. Not a lot easily available on Dr. Google. ____________________________________________________________ The next option is clinical trial ABT888/irinotecan. According to clinicaltrials.gov, this is a Phase 1 trial but it appears DF is doing a Phase 2 arm. This would be an IV drug and apparently causes substantial diarrhea. That could make every day life, travel, etc. a bit of a challenge. Four biopsies would be required during the course of treatment, and it appears there is a 60% chance of losing my hair. http://www.clinicaltrials.gov/ct2/show/NCT00576654?term=ABT888%2Firinotecan&rank=1 http://www.dana-farber.org/research/clinical-trials/clinical-trial.aspx?tid=2440 http://www.drugs.com/mtm/irinotecan.html ABT888 is known as a "parp inhibitor" and was hoped to be the major breakthrough for triple negative breast cancer. The jury is still out, and clinical studies are ongoing to determine if it's effective. http://en.wikipedia.org/wiki/PARP_inhibitor ____________________________________________________________ Another option in an ABT888 trial is with "cbt" which I think is carboplatin. Not exactly sure, but I think this is the correct translation. ____________________________________________________________ The next one mentioned is MM121/cetux. http://en.wikipedia.org/wiki/Cetuximab Cetuximab is an IV-administered drug, and this trial appears to be a trial to determine safe dosage (Phase 1). I'm not overly excited about Phase 1 trials as the intent is much different than Phase 2. The goal is to determine the safest dose that can be administered without too many side effects. That may be too much "guinea pig" for me at this point. Maybe later in the game, when all else fails. http://www.clinicaltrials.gov/ct2/show/NCT01451632 ____________________________________________________________ One that I found and that interests me the most is MK-2206. Objective: To determine whether Akt Inhibitor MK-2206 achieves objective tumor responses (CR, PR) in advanced breast cancer patients who have PIK3CA mutation and/or PTEN loss. Secondary Objectives: 1. To determine the 6 month progression-free survival on MK2206. http://www.dana-farber.org/research/clinical-trials/clinical-trial.aspx?tid=2410 http://www.clinicaltrials.gov/ct2/show/NCT01277757 Interestingly enough, this trial requires a diabetic to be well-controlled on oral meds before being accepted into the trial (as in an a1c less than 8.0). As a matter of fact, most of these trials seem to be rather neutral about diabetics. Not sure going off metformin is wise. This is an oral med administered in 28-day cycles. The appeal of this trial, besides the oral drug protocol, is that there will be additional testing on my metastatic tissue to determine the PIK3CA mutation or PTEN loss. About 25% of metastatic breast cancers express the PIK3CA mutation. The tumour suppressor phosphatase and tensin homolog (PTEN) is an important negative regulator of cell-survival signaling. In the case of liver cancer, the stronger the PTEN, the better the prognosis. I'd like to know whether or not my cancer is expressing PTEN. ____________________________________________________________ I found one clinical trial at Sloan-Kettering Memorial that interested me. Of course, it would require travel to NYC, but that is not an impossible task. It uses Abraxane (another form of Taxol which I had last summer) with or without Tigatuzumab. This is an open-label randomized study, so I may be traveling to NYC and be simply getting abraxane, which I could get 20 minutes from home. This probably doesn't make a lot of sense. http://www.mskcc.org/cancer-care/trial/11-082 http://clinicaltrials.gov/ct2/show/NCT01307891 _____________________________________________________________ This is all pretty technical, and if you've read through all this or clicked on a few links, you have my utmost admiration! It gives you an idea of the complexity of determining which treatment would be the right one. In some ways, you may as well throw at a dartboard and see where it lands. And oh, I haven't even mentioned the other, more traditional chemo options: Ixabepilone either alone or adding it to the Xeloda I've been taking. This combination scares me a bit as 36% of those patients in the clinical trial experienced grade 4 neutropenia (completely suppressed immune system). There is a good discussion on breastcancer.org with ladies doing Ixempra - the brand name - and it's not an easy chemo at all. It's an IV drug, port required. http://www.drugs.com/mtm/ixabepilone.html Navelbine is another standard therapy administered by IV on a weekly basis. There is a 12% chance of hair loss, but nothing else seems any more onerous than any other chemo. The inconvenience factor is high, though - weekly trips for IV treatment. Gemcitabine (Gemzar) is another weekly IV treatment. Hair loss was less than 15% http://www.drugs.com/sfx/gemcitabine-side-effects.html ____________________________________________________________ So there it all is...information to absorb and decisons to make. After doing all this research and reading, I'm leaning towards MK-2206. It seems to hit all the important notes for me: a) learning more about my own specific pathology and my prognosis; b) taking a drug where complete remission is one of the goals; c) continuing on the trial for as long as it continues to work; d) one pill once a week. Tomorrow's appointment should result in some very interesting discussions!

Yikes! Got the results and there's nothing much to cheer about...

except that I still feel fine.  Just fine.  But I guess I'm not quite fine.

From my PET scan report:

"Progression of metastatic disease in the left supraclavicular region, left

superior mediastinum, left axilla, left hilum and left lung.

Slight improvement of left subcarinal lymph node since previous study of

05/11/2012." My oncologist at the local Dana Farber clinic is talking to Dr. Chen at DF in Boston and the search is on for an appropriate clinical trial.  I had sort of figured out that there was progression from looking at my copy of the scans (remember, I'm getting my PhD in Breast Cancer Studies and I think I just passed the radiologist exam!).  You put the crosshairs on a spot that looks like it doesn't belong, and the software tells you the "SUV" uptake.  It's easy to find out that you want that uptake to be less than 2.0, so when you start seeing 5+ or 15+, then you know... SUV stands for standardized uptake value, and it is a measure of how much radioactive glucose the cancer area "ingests" (for lack of a better description).  I have one axilla node that is measuring at 15, which is comparable to maximum race car speed.  OK, well, spur of the moment...going to Christine's for Chinese food so time to end this.  Time for a breakthrough and a cure!

Are researchers getting closer to a breakthrough in how to treat cancer?

An article in today's Boston Globe reported of evidence pointing to cancer stem cells as the cause of cancer returning after what appears to be successful treatment by surgery, radiation and chemotherapy (or as some of us call it - slash, poison and burn).  Most chemotherapy attacks fast-growing cells, which is thought to be the right approach to stopping the cancer in its tracks.  And it's the reason for the miserable side effects because many good cells are destroyed in the process.  But there has been ongoing debate for more than a decade about whether or not rare, slower growing stem cells that are often left behind after treatment, are the key to understanding metastatic cancer.  This theory was discussed in one of several articles in 2006:

http://www.nytimes.com/2006/02/21/health/21canc.html?_r=1&pagewanted=2

And today, there appears to be new, more substantial evidence that controlling stem cells may be the key to controlling or curing cancer:

http://bostonglobe.com/news/science/2012/08/01/new-evidence-for-stem-cells-that-spur-cancer-growth/5qWKOF7P5jCK42wwSR91hI/story.html

A small Cambridge-based company, Verastem, is currently developing drugs that will attack these stem cells.  The overview on their website explains why getting to the root cause of "mets" is so important...over time, cancer cells develop an immunity to chemo, then you move on to another and then another...until all current chemos have been exhausted and you run out of options.  And then the cancer runs over you.  In my mind, it's not unlike the "super-bugs" that have developed because of our overuse of antibiotics.  How many times can a child be put on amoxicillin for an ear infection before it stops working and your pediatrician must prescribe a different one?  Of course, the difference is that the ear infection will usually be cured.  Not the case with cancer.

http://www.verastem.com/research/

This is the type of research and results that gives me hope, hope that I can be around long enough to see and benefit from the completion of the "race for the cure."

A little update on me since so many of you have asked...

I am doing quite well on Xeloda.  We did have to reduce the dose to 1000 mg twice a day because of some side effects (blisters on my feet which are much improved and small mouth sores which have also disappeared).  I have a PET/CT scan on the schedule for Monday, August 6th at 11:30.  You can be sure I'll be getting a CD of that scan immediately afterwards, along with a copy of the last one (which I gave up to my Dana Farber oncologist).  And I will "play" radiologist as I always do, comparing the two scans and hoping for either a) no evidence of disease (NED as we like to call it); b) regression (a relationship with Reggie-boy would be acceptable); or c) stability (the stable boy is OK, too).  Alternative d) would be progression, and there is no room in my brain for that thought!

I've also taken up bike riding for fun and a little fitness.  I loved watching everyone, including my husband, participating in The Prouty this month.  And I couldn't have been more proud to see him cross the 20 mile finish line with my daughter by his side.  I was wishing I could be riding along with everyone, even if just for a few miles.  I'm not fooling myself into thinking that I might be able to keep up with the "big boys and girls" but I'd be thrilled to feel up to doing ten miles or so.  I'm already able to handle six miles, even though I just started this little campaign on Sunday.  Those six miles were on relatively flat terrain, nothing like the mountain roads that make up The Prouty route.  Still, not bad for a 62-year-old gal who has not exactly been busy focusing on physical fitness!  And who hasn't been on a bike for about 25 years!

Please keep sending me positive thoughts, love and good wishes.  And while I'm not a religious person, I'll gladly accept your prayers, too! 

And most of all, if you are inclined to make a donation to some organization on my behalf or on behalf of a friend or family member fighting cancer, consider donating to an organization focused on research rather than awareness.  Because in my opinion, that's what this race needs.

And I cannot forget this one little important announcement...

Sweetie's daughter gave birth on Wednesday to Braden James dos Santos, weighing in at 7' 7 oz, 18 1/2" long.  That makes me a great-grandma!  Here's a picture of the handsome little guy:

Braden James dos Santos

And another:



Christine with her grandson Braden

OK, one more for good measure:

Congratulations to Britney and Bruno dos Santos and the whole family! 

So busy with life!!!

Wow, these last two weeks have been jammed with lots of mostly fun things, I almost don't know where to start.  So I'll get the one bit of "not so much fun" news out the way first.

Xeloda can cause hand/foot syndrome - feeling hot, peeling, redness, blisters, etc.  And while I had been basically free of this side effect for the first round, it caught up to me on this second round.  On the Saturday of The Prouty, it was hot, very hot.  And while I didn't walk around that much and I wore the most sensible (and expensive) pair of sport sandals that I own, I developed blisters on both of my feet - just below my second and third toes.  Big blisters, longer than an inch and about 1/2" wide.  On Sunday they got a little worse and by Monday I didn't want to do much walking at all.  Now, keep in mind that I wore the same style of sandals in Paris and walked for nine days with nary a red mark.  So I was pretty sure I knew what caused it.  And I had a few small mouth sores and my lips have been peeling - as if I sunburned them.  On Tuesday after we got home, I got a call from the Genentech support RN (Genentech makes the Xeloda) and she told me I had to stop taking the chemo immediately and notify my oncologist.  Apparently, this is a grade 3 side effect that must be reported to the FDA.  Yeah, they actually keep track of this stuff.  Well, I had just taken the last dose of the second round, so I was heading into my "off" week, so that wasn't an issue.  I emailed my doctor and she immediately responded with instructions to her nurse to check with me on Friday.  If the feet were improving, I could start chemo again on schedule with a reduced dose.  Otherwise, we'd wait until the problem had cleared up.

The good news is that the blisters are healing, I got the OK to proceed with chemo, and I'll start round 3 tonight.  The dose was reduced from 1500 mg to 1000 mg twice a day.  Maybe this will also help with the "spicy food and red wine syndrome".  Both things cause a little burning as they head down my esophagus.  The obvious solution is avoidance, and in many cases a good red Sangria makes a pleasant substitute for the red wine.  I'm hoping this reduced dose solves both problems.  And that it works.  I have a PET/CT scan on 8/6 that will tell the story.

Now, on to more fun news.  The Prouty was awesome!  And Rick rode 20 miles with Christine - I was so proud of him.  It was hot and mountainous, but he finished and he looked pretty good when he came through that finish line.

Christine and Rick finishing 20 miles!

Alex, Conner, Allison and me finishing our little walk

Sweetie and some of her Sweathogs - Ron Faucher, my son Ron, Allison, Alex, Sweetie (aka Christine), Paul and Conner

Getting ready to ride - Paul, Conner, Allison, Christine, Alex and Rick

After The Prouty event, we drove to Woodstock, VT and checked into our B&B, where we were meeting our good friends John and Donna from Missouri.  We stopped on the way for provisions - wine, local cheese and crackers.  They arrived from the Manchester, NH airport about a half hour later and we enjoyed our cocktail hour and caught up on all the news.  Then we went out for a nice dinner.  The following day, the guys played golf and the girls explored Woodstock, Queechee, and the surrounding area.  And we did our part to support the local economy and the "made in the USA" initiative.  Did you know that if every person spent $1 a day on products made in this land of ours, it would go a long way towards solving our economic and unemployment problems.  We both did our part!!!   Here's a link in case you'd like to read about some of the initiatives underway:

http://abcnews.go.com/WN/MadeInAmerica

After golf, we had another nice cocktail hour with the guys, then we went to a local restaurant with a Caribbean flair...very nice!  Of course, the company was excellent so it was a "no lose" situation!

On Monday we checked out of the B&B - the guys went first so they could meet their tee time at The Equinox in Manchester Center, VT.  We gals had a more leisurely drive, leaving about an hour afterwards, and took in the beautiful scenery.  We were lucky enough to arrive in town at the same time that a Model T Club had inundated the town with their beautiful antique roadsters.  We stopped at a local drugstore for first aid supplies to help my ailing feet, and there were several in the parking lot.  We spoke to a couple from Ohio who explained that they had trailered their buggies to VT and were doing a 100 mile circuit.  It looked like a lot of fun, and seeing so many in the town was very neat.  Donna checked into her hotel room, we strolled around the grounds a little bit, then we parked ourselves in rocking chairs on the front porch with glasses of iced tea and waited for the guys to return from golf.  Manchester Center is really pretty - I hadn't spent much time there and now I want to go back in late September for an overnight stay.  The place is loaded with outlets, but they blend in with the local charm of numerous B&Bs, shops and restaurants.  Donna and I drove up to the Wilburton Inn, situated on a hill with fabulous views of the Green Mountains...and very strange sculptures on its grounds. 

http://www.wilburton.com/

Now that I have visited the website, I have learned that the sculptures have a purpose - to illustrate the conflict resolution process.  We should have looked more closely, it would have changed our perspective completely!!!


http://arttoscience.org/sculpture.shtml


Are you still with me?  This is getting long!!!


We got home Monday night and I did a lot of resting my poor feet.  They were not happy; and as any woman knows, if your feet are not happy you are not happy!  The tootsies spent some time in the lake and more time in the elevated position with my butt in my recliner! 


This past Saturday, John and Donna came for dinner before heading to their airport hotel (they had a 6 a.m. flight).  We had a great time and the weather was perfect, we had a nice boat tour of the lake while sipping wine and eating great local Grafton maple smoked cheese.  Dinner was steak and lobster - how can you go wrong with that combo?  And their visit was motivation for us to finally get "settled" in our little house.  After a year, it was about time!  All the stuff that needed to be stored in the attic finally made its way there, Rick's office was presentable for the first time, the guest room looked like it could accommodate guests, and our bedroom was finally rid of the stuff one stashes when making your downstairs presentable! 

And then Sunday rolled around and we were the site of a pretty big family gathering/lake party.  At its peak, there were 16 of us enjoying the lake, the boat, bbq chicken and sausage, fresh corn, fruit, a very tasty pasta salad, and a birthday celebration for Connie Russell - Paul's mom complete with a fruit tart (her favorite) and a chocolate banana cream trifle.  We realized that our big lake party last year was on the same weekend - we may have started a birthday tradition.  It was crazy busy and crazy fun!  I have enough food left over for another army! 

And that's good because yesterday I was in "recuperation" mode...lol! 

Tumor markers up a little

Not exactly good news, but not totally unexpected either...

My CA27.29 (tumor markers) came back at 91 as of Wednesday.  It was 55.8 at the end of April when last measured.  My oncologist reminded me that I didn't start treatment for several weeks and I've only completed 1 1/2 cycles of Xeloda.  So it isn't exactly a fair assessment of whether or not Xeloda is working for me because we don't know where I was the day I started treatment.  We'll use the 91 as a baseline and test again in mid-August.  I have a PET/CT scan scheduled for August 6, and that should give us some idea - if there is stability or regression, that will be great.  If the cancer has progressed, I'll be lobbying for another chemo to accompany the Xeloda, or we head in a completely different direction.

I continue to look and feel like a completely normal, healthy human being. 

FREE.................

One of my breastcancer.org sisters posted this on our discussion board and I just had to share it! 

Time for The Prouty

Last July our family made the drive to beautiful Dartmouth, NH, to participate in The Prouty, a fund raiser for the Norris Cotton Cancer Center: 

 http://cancer.dartmouth.edu/

http://cancer.dartmouth.edu/dv/how_your_support_helps.html

Our team name is Sweetie and Her Sweat Hogs - named in honor of my son's lovely partner, Christine Sweetser.  Without her encouragement, none of us would have participated in this great event last year.  She is a physical therapist, a tri-athlete, and a wonderful part of our family.  She lost her own mom to cancer, so it was natural for her to get involved in this event.  And last year she was accompanied by several of our family members who biked more miles than they probably have ever biked at one time, in such mountainous yet beautiful terrain.

It was such a great event, and everyone felt so good about it (after they recovered, of course!) that we are doing it again. 

Like all of these fundraiser events, we are encouraged to solicit donations.  I'm attaching a link to our team page in case you'd like to support our cause. 

http://theprouty.kintera.org/faf/search/searchTeamPart.asp?ievent=997290&lis=1&kntae997290=83D70CB19397401097626EF84810E6DC&supId=0&team=5131975&cj=Y

Thanks in advance for your continued support - both emotionally and in every other way!

Michelle

Healthcare law upheld - a discussion

In case you're interested in what breast cancer patients think about the Health Care Act, here is a very good discussion.  Within it, you will find external links to summary information and some timeline information - when certain provisions will take effect.  It's worthy of your time to check this out.

http://community.breastcancer.org/forum/113/topic/789805

For those of you who feel this should be a states rights issue, there is a provision where a state can set up its own plan that provides the same level of care.  The state can go to the Heath and Human Services department and gain approval of their plan, assuming it meets the criteria.

And Congress and Congressional staff will now be offered the same insurance offered to those in the insurance exchanges.  No more "special" plans for them - they will have to live within the system like the rest of us.

Whether you agree with a national healthcare plan or not, there are many provisions that MOST of us agree are good. 

Read and learn.

First Xeloda cycle is done...

and so far, so good.  I had labwork yesterday and my CBC looks really good.  I am having a little acid reflux and spicy foods hurt my esophagus.  So, I'm taking Prilosec for the acid problem and I'll just avoid spicy foods.  Not a big deal, really. 

My next oncology checkup is July 11th.  But I do have an eye doctor appointment on July3rd.  I saw the same optometrist for ten years, so I hated having to make that change.  But I guess it's not practical to fly to Kansas City for an eye doctor appointment!!!  And if I want new 30-day contacts, I've got to bite the bullet.  Small price to pay for being back here in New Hampshire, close to my family.

First weekly Xeloda checkup...

and all is well.  My labwork all came back almost identical to my April results, so that's good news.  So far I've not experienced any side effects at all.  Apparently there is a very specific enzyme that is required to process this drug and if you don't have it, you have major-league nasty side effects.  And like most chemotherapy, side effects are cumulative and tend to occur after you've been on treatment for some time.   I've got a ways to go before I'll know if this is going to be a gentle drug.  And even more important, it will be a couple months before I know if it's working for me. 

Keep your fingers crossed!

A medical update

Now that our Paris trip (a definite no-cancer zone) is a fond memory, it's time to come back to the reality of dealing with metastatic breast cancer (MBC). 

Pills, pills and more pills.  So now I have two "chronic" illnesses - Type 2 Diabetes and MBC.  Taking medication is nothing new to me - I've been diabetic for 11 years and I'm used to swallowing medications.  And during chemo last summer, I felt like a chemical waste dump as I took so many meds to counteract the side effects of the strong chemo that was supposed to tame this beast.  The meds made chemo tolerable for me, and I managed to get off all of them, other than the diabetic meds, for about six months.  And then came the blood test that foretold the likelihood of more cancer taking up residence somewhere in my body.  And the PET/CT scan that confirmed our worst fears. 

Last Tuesday my Xeloda arrived from the specialty pharmacy associated with Express Scripts.  Surprisingly, this $2600 a cycle medication has a co-pay of just $25.  That's a relief, I was a bit worried that we'd be on the hook for several hundred dollars a pop.  I took my first dose last Tuesday evening, 1500 mg (that's 3 of the brownish-looking pills) thirty minutes after eating.  It's not a med you want to take on an empty stomach, as it can cause nausea.  So morning and evening, after dinner, I have X for dessert.  I've now completed a full week of the two week cycle, after which I'll have one week off before "rinse and repeat." 

Xeloda is the brand name for capecitabine used extensively in the treatment of both colon cancer and metastatic breast cancer.  My Dana Farber oncologist in Boston told me that the side effects were mild, maybe a little peeling of the hands or feet.  But it's another one of those situations when you read the prescribing information and all the possible, or likely, side effects, it's not as benign as she made it sound.  But then, reading the prescribing information for aspirin can scare you, too. 

The good news for me is that, so far, there is no news.  I've not experienced any side effects.  I seem to have avoided the more immediate possibilities like nausea or severe gastrointestinal distress (my nice way of saying explosive diarrhea).  The "peeling" is actually hand/foot syndrome and it can arrive, on average, 11 to 79 days after treatment begins.  So I haven't been on X long enough to experience that particular problem.  There is the possibility of other side effects that could crop up - problems with my bilirubin counts, the usual low white and red blood counts, and a few other unpleasantries that you can read about if you're very curious:

http://www.gene.com/gene/products/information/xeloda/pdf/pi.pdf

I will have bloodwork weekly for a while to be sure that none of these nasty things are unknowingly occurring.  Dosage can be adjusted or a treatment cycle skipped if severe side effects do occur. 

How will we know if X is doing its job?  I'll have PET/CT scans again mid-August.  Dr Walsh, my local Dana Farber oncologist, warned me that these first scans might not show if X is effective, because there was a month from the time my MBC was found until I started taking X.  But it sure would be nice to see some regression, or as my MBC sisters call it "Reggie-Boy shows up."  The long-term goal, of course, is to have a scan that shows no evidence of disease.  That would mean a nice long dance with NED.  NED and Reggie are my friends.  The "stable" boys are OK, too. 

One more thing...on Wednesday after we returned from Paris, a biopsy was performed on one of the nodes that lit up the PET scan.  The point was to reconfirm the hormone status (ER, PR, and Her2/neu).  The results came back ER negative, PR 3% (essentially negative) and Her2/neu negative.  In discussing the Her2/neu results, we know that my pathology from last year's surgery showed that I was Her2/neu +.  One + is considered negative.  Some people are ++++.  They get a targeted therapy called Herceptin.  There are some clinical trials underway to determine if administering Herceptin to those of us with just one + is an effective treatment.  So because the latest biopsy came back as negative without explanation, my doctor has ordered a FISH test to ascertain my Her2/neu status.

http://www.breastcancer.org/symptoms/testing/types/fish.jsp

If the test should come back with one +, I may qualify for one of the clinical trials and would receive Herceptin or maybe even that new "smart bomb" that some of you heard about.  I need all the help I can get, and I'll gladly participate in any trial that shows promise in controlling MBC.

For those of you who might want to learn more about MBC, there is an excellent website:

http://www.mbcn.org/

One more site where you can join in discussion with others who are supporting family and friends with breast cancer:

http://community.breastcancer.org/forum/16

There are close to 115,000 people who have registered on breastcancer.org - it's a wonderful site and has been an incredible source of support and information to me and all the others who are fighting this beast, and there's a place for family and friends to support one another, vent, and learn.

And now, for the rest of the story...

Anyone remember Paul Harvey?  He was such a great story teller and always had a big pause before telling "the rest of the story."  I used to enjoy listening to him when I would leave work to go buy lunch - he was always on during the mid-day news programs.  I feel a little like I've imitated him, it's been a while since I've written about our trip to Paris but it's time to finish the story.

On Friday morning we were up bright and early, enjoyed our usual quiche, coffee and pastry breakfast, then headed downstairs to meet the pre-arranged taxi that would take us to Versailles.  It's a bit outside of the city and the ride was about 30 minutes.  We were happy to be leaving the city, the incoming traffic jam rivaled anything you see in LA or NYC. 

Our  driver got us as close as he could, Christine went ahead to scout out the handicap entrance, and before long we were in, bypassing the insane crowds that were already lined up.

I am thinking that the French school year is similar to ours in America - we ran into large groups of students at every attraction.  Lines were long every day, in every way. 

We were immediately struck by the grandeur of the complex, the sheer size is overwhelming, and there is gold everywhere!

"The Château de Versailles, which has been on UNESCO’s World Heritage List for 30 years, is one of the most beautiful achievements of 18th-century French art. The site began as Louis XIII’s hunting lodge before his son Louis XIV transformed and expanded it, moving the court and government of France to Versailles in 1682. Each of the three French kings who lived there until the French Revolution added improvements to make it more beautiful. "

It's just hard to fathom that the chateau started as a mere hunting lodge.  We here in the US have some very different ideas about hunting lodges - mostly pretty simple, rustic structures that can be thought of as a "cabin in the woods."  These Louis kings certainly had other ideas!

Every time I tour a European castle, I am completely astounded by the complexity of the architecture and the beauty of the ceilings.  If all you ever did was go in and look up, you would be filled with amazement and wonder.  How on earth did they manage to create these beautiful ceilings?  The idea conjures up sites of scaffolding with more than one artist at work for decades on just one room.  And yet they are all elaborately decorated, painted, gilded.  It's just beyond comprehension, really.

And the marble, what tools did they use to chisel it into such grandness?

A little wallpaper!

Hard to believe that people would deface some of the mirrors

The Queen's Bed

After finishing what we thought was the basic tour, we found a cafe in the Chateau and grabbed some lunch.  We split some nice sandwiches on baguettes that were definitely big enough to share, and of course, some fabulous desserts.  Never passed up desserts!  A lemon tart and an eclair, both were delicious! 

After lunch, we headed out to explore the fabulous gardens.  Enormous gardens, with grand stairways leading down to more fabulous gardens.  There was just one thing to do - rent a golf cart.  Yes, an anachronism, for sure, but the only way to get Allison and me around the enormous and beautiful landscape.

"Situated to the west of the palace, the gardens cover some 800 hectares of land, much of which is landscaped in the classic French Garden style perfected here by Linnea. Beyond the surrounding belt of woodland, the gardens are bordered by the urban areas of Versailles to the east and Le Chesnay to the north-east, by the National Arboretum de Chèvreloup to the north, the Versailles plain (a protected wildlife preserve) to the west, and by the Satory Forest to the south."

What's a hectare, you ask?  Well, it's 2.47 acres, so you can get an idea of the massive size of these gardens.  Entry to the gardens is free during the week, there is a fee on weekend.  The reason - they don't operate the magnificent fountains during the week, a huge disappointment for us as we were there on a Friday and all the fountains were still.

You may notice the symmetry in the gardens.  Apparently the Kings were fond of symmetry, you see it both inside and outside the Chateau.  Even when gazing through the windows, it appears that the gardens were designed to offer up a jaw-dropping view.

The greenery was lush and beautifully manicured, but I am fond of flowers.  So I was delighted when we came upon the home of Marie Antoinette and I found a lovely rose garden.

And Hydrangeas

After our golf cart tour, we made our way out of the Chateau, following the crowd in hopes that it would lead us to a taxi stand.  And we did find one, but there was no taxi.  We hung around for a bit but we were coming up empty, so we proceeded to a Tourist Information Center and the kind folks made a phone call and we climbed in about 15 minutes later, relieved, because for just a few minutes we were worried about how we were going to get back to Paris!

We got back to our apartment and decided that it was time for dinner and a little more exploring our immediate area.  That morning Rick had noticed tents lining the streets - a flea market or some sort of neighborhood sale.  He wanted to look and we wanted to find dinner.  So we were off again, poking around the sale items and finding interesting "stuff" like lots of kitchen and silverware, old Russian and French war headgear, glasswear and old jewelry.  What we didn't find was what I was looking for - handcrafted items for sale.  I wanted a coffee mug made by a French potter.  I decided last year that coffee mugs would be my new "collectible" as they would be useful, unique and remind me of the places where I acquired them.  And my existing mugs were 15 years old, the pattern faded and I was ready for a change. 

After exploring, it was time for dinner.  We stumbled upon a little bar/cafe that we weren't too sure about, but decided that we were hungry and it would do.  Well, it turned out to be a great find.   The bartender/maitre d'/waiter/everything but chef who didn't speak much English.  But he was able to provide a menu that had a bit of English so we could figure out what to order.

Gotta love the fancy table "cloth" -- pretty much like a giant unfolded paper towel!
And yet, it looks downright charming!

Steak with Potatoes Dauphone

The best veal dish

Apple tarte tartin - I am in love with this version of apple pie

Crepe with bananas and chocolate

Honestly, this was some of the best food we had, and we were so pleasantly surprised.  And the prices were so reasonable! 

Our day ended on such a fabulous note!

Saturday came, the girls' last day in Paris, and there was just one thing on the agenda - SHOPPING.

We took a taxi to Bon Marche, thinking it would be a good place to start.  Well, Bon Marche is a good place to look but not so much to buy.  High end designer "shops" translated to American "departments" and this was not exactly what we had in mind.  We did spend some time in La Grande Epiciere, a fantastic high end grocery store attached to Bon Marche and ooh'd and ah'd over the beautiful displays and fabulous products.  I took a few pictures until a store employee told me photography was not allowed.

In Bon Marche, I was pleased to see the design on my purse come pretty close
to the design on this Louis Vuitton top.  I'm so stylin!!!

LOL at the American Products on display

Pasta in a rainbow of colors!

Fantastic-looking meat case!  And this is when I was busted for taking pictures!

So we went in search of some true Parisian boutiques and were rewarded when we walked into Julie & Cie.  The saleslady couldn't have been more helpful, Christine loved the styles and bought dresses and I bought a couple of cute tops.  It was nice to find clothing with Paris labels!  And the sales ladies were enchanted by Christine's perfect figure.  Everything she put on looked fabulous (oh, to be young and a size 2 or so!).  "Tres jolie" they said repeatedly!  Rick and Alli stayed just out the door as the shop was tiny, and gave their approvals as she modeled for them.  Then we proceeded down the street to another little shop, similar to this one, where we contributed a bit more to the local economy.

It was time to eat and we went in search of one of the supposedly top ten bistros in Paris.  We were in the neighborhood, so we made our way and found it - closed.  Like permanently closed.  There were other options but it was getting late for a Parisian lunch, and our first choice told us it was too late.  We made our way to another bistro and luckily, they were still serving. 

Feeling adventurous, I ordered steak tartare.  And we shared an appetizer of escargots.  The escargots were ok, I loved the tartare.  Everyone else's meal was just OK, if I recall.  Rick ordered a burger that I think our server forgot about, as it came out well after everyone else had been served.  I think this wa the only service mishap of the trip.  The waitress seemed stressed out and I think there may have been a bigger lunch crowd than normal.

Back to shopping involved a taxi back to the Champs Elysees.  It was Saturday night and the street was busy, including at least a couple of bachelorette parties.  One of them was having a scavenger hunt and I was invited to dance with the bride (must have had "dance with a mother" on the list!) 

Christine was accosted by another party to accept a swat on the butt and pay a couple of euros for the "pleasure".  

It's either a clever scam or an interesting way to help fund a wedding.  In any case, it was cute and clever.

Rick and I decided that we'd had enough, so we found a table in an outdoor cafe and I ordered a very expensive but absolutely delicious mojito.  I'm sure it was the best one ever, and for 14 euros, it should have been!  And it had plenty of ice...but in this case, more mojito and less ice would have been appreciated.  The girls shopped and we people-watched.  And then we got quite a show...the local gendarmes arrived along with a fleet of tow trucks.  Apparently, we were sitting right in front of a "no parking" zone and it was time for the cops to generate some revenue.  Paris cars are tiny - in some cases the Smart Car" looks big by comparison.  So the cops were able to use some wheel dollies and manually push the cars out enough to get them attached to a tow truck, then take them away.  It was amusing to watch, not so amusing if your car was one of their subjects.  In a couple of instances, the drivers returned in time to prevent the tow-away.  That was also fun to watch as the drivers negotiated with the cops, paid their fines on the spot, and reclaimed their cars. 

Talk about how to ruin your vacation...at least one of the cars was clearly marked as a rental!

The girls returned, enjoyed a quick beverage, then were off again to shop until the stores closed.  Allison was having some success and the girl were enjoying sister-time.  We were enjoying relaxing, people-watching, car-towing time so everyone was happy.  We were back at the apartment around midnight.

Sunday morning came, the girls were packed, showered, and ready to head to the airport.  The pre-scheduled van taxi arrived exactly on time and they were off.  We relaxed for a while and then headed to Brasserie La Lorraine for brunch.  It was Mother's Day in France, and the restaurant was pretty full - of older Parisians, actually.



We had walked by this places many times while heading to the taxi stand, so it seemed right to have a meal there, if we could get in without a reservation.  We were seated right away, between two couples that had to be in their late 70's or early 80's, the waiter immediately caught on to our need for an English menu, and we settled in for what turned out to be a rather fun meal.  The gentleman on Rick's left asked if we were British or American, Rick responded and the guy started speaking to us in pretty good English.  Their appetizer arrived - a platter full of fresh oysters. 


      
While I love most seafood, raw is not my thing and oysters are not my favorite in any form. Nice to look at and they seemed to enjoy them. Rick ordered French onion soup and I got a very delicious fish soup - more like a bisque - that was served with some croutons and a mousse of some sort. I have no idea what it was, and I didn't even know quite how I was to experience the whole thing so I asked the waiter and he spread some of the mousse on the crouton, plopped it in my soup and then onto my spoon. Voila! I soon learned that it was even better if I let the crouton sit there and absorb some of the soup before eating, it all made sense.

For my second course, I had ordered a warm and cold salad.  Rick ordered steak with frites.  For some reason, I wasn't very hungry and had suffered a little intestinal distress earlier in the day, so I was trying to eat lightly. 

Our neighbor told Rick that Parisians don't eat French onion soup but he approved of my fish soup...lol.  And then their food arrived - a sea bass encrusted with salt.  It looked spectacular, I wish I had taken a picture.  It was on a gigantic platter and the tail was wrapped in foil.  It was presented to our neighbor diners, then taken away to be plated.  It was served with delicious melted butter, not drawn butter as we would see here but creamy whole butter.  I ooh'd and ah'd and the gentleman grabbed Rick's fork, put some of the fish on it along with the butter, and handed it to me.  OMG, it was sublime!  And their accompanying "potato puree" served in a little cast iron pot was equally delicious.  




The gentleman suggested we change our order but I said something about my "petit appetit" and that Rick liked his "boeuf" so we waited for our food to arrive while they enjoyed their beautiful fish.  When our meal arrived, they asked about Rick's frites.   The wife, who spoke not a word of English, told her husband that Rick should not eat them, they were no good.  The gentleman asked if the frites were good, Rick indicated they were "so-so" and before we knew what had happened, the waiter appeared, had a conversation with the gentleman, and Rick was instructed to select a different side dish.  Having tasted the potato puree, he ordered the same and they arrived in no time.  Much better selection! 

We finished our food, they consumed all three courses - the oysters, the fish course, crepes for dessert, strong French coffee and a "digestif" - a cordial to us.  I was amazed at the amount of food that Parisians, even elderly Parisians, can consume in one sitting!  The couple on the other side of us did the same thing.  And anyone who says the portions are smaller hasn't looked in a while!  One dessert was 3 scoops of sorbet with berries.  One scoop would be reasonable, but 3?  I guess they just walk it all off!!!
And then it hit me...I was not feeling well at all, realized I had a fever, and had a burning desire to get back to the apartment, take some Tylenol and lie down.  So that is what we did.  I spent the afternoon wrapped up in a comforter watching Queen Elizabeth's jubilee flotilla, and hoping that I recovered quickly.  We had reservations for a dinner cruise and it was pre-paid.  So whatever bug had a hold on me needed to release its grip in time for dinner.  I took a little nap, relaxed, let the drugs do their thing, and managed to get up about 6:30 and dress enough to go out.  No makeup, just earrings and clothes, it was all I could manage...ugh!

We took a taxi to the boat dock and boarded the Cristal - part of the Bateaux Parisiens fleet.  It was a lovely evening and I was so glad I felt good enough to do this with Rick. 

It was a lovely evening, the food was pleasant and I was able to enjoy the meal, the couples to our right spoke brilliant English (one couple was from MA and the other from Scotland) and we enjoyed the company.  The lights of Paris were lovely and this afforded me a full view of the Eiffel Tower when it sparkles on the hour.

It was a wonderful way to spend our last night in Paris.


Monday morning was cloudy and a little rainy - the one and only day where the sky wasn't blue by the time we were up and about.  For us, it didn't matter as we were off to the airport at 10 a.m., with beautiful memories.

Here are some random pictures:

The stairwel of our 1930's Art Deco apartment building

The elevator in our building

Our Parisian street

A peak inside the apartment