Friday, August 31, 2012

Officially accepted into Clinical Trial

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

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!

Wednesday, August 22, 2012

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 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!

Monday, August 20, 2012

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!

Friday, August 17, 2012

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. ___________________________________________________________ ___________________________________________________________ ___________________________________________________________ ___________________________________________________________ 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 - is a link to a Phase III clinical trial that explains a little more about how it works: ___________________________________________________________ ___________________________________________________________ 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!

Wednesday, August 15, 2012

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 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!

Tuesday, August 14, 2012

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. 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. 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: ____________________________________________________________ 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. Here's a little more info on the drug and its effectiveness in non-small cell lung cancer: 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, 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. 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. ____________________________________________________________ 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. 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. ____________________________________________________________ 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. 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. _____________________________________________________________ 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 with ladies doing Ixempra - the brand name - and it's not an easy chemo at all. It's an IV drug, port required. 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% ____________________________________________________________ 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!

Thursday, August 9, 2012

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

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! 

Thursday, August 2, 2012

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:

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

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.

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.