We had a great time in Kauai and I promise pictures and the story real soon. First, a little update on me and how I am doing.
I had a lot of nausea while on carboplatin and my reward for putting up with it was nothing good. The tumor markers, as I mentioned earlier, are up over 1000 and the CAT scan from yesterday shows lots of progression, including into the liver. I was sure hoping it never got to that point but this cancer is so damned aggressive and nothing, so far, seems to slow it down.
So I am now on Gemzar (gemcitibine) - two weeks on, one week off. I had my first treatment on Wednesday and I seem to be doing ok. No nausea so far and I've been able to eat full meals. After a couple cycles, we'll be checking the tumor markers to see if there is any sign of regression. This chemo is known to be tough on blood counts, and I am already anemic so I'm sure I'll be watched closely. My oncologist doesn't like to do transfusions, and I think I agree with her.
In the meantime I have located a lab that will take my tissue from a fresh biopsy and perform 96 test assays to uncover a chemo that looks promising. If the website is correct, the cost is $510, probably not covered by insurance, but worth every penny if it comes up with the "killer chemo" that I so desperately need.
Speaking of insurance, why is it so hard for everyone to figure out that my Blue Cross Blue Shield is primary and Medicare is secondary. The rules are clear - if your employer (or in my case my hubby's employer) has more than 50 employees, then the employer's insurance is primary. I think this is going to be an ongoing battle and I am ready to ask BCBS for a nurse case manager to help us with this stuff.
Friday, February 22, 2013
Wednesday, February 6, 2013
Must there always be a spoiler???
Ready to go tomorrow morning at 3:45 am for our 6 a.m. flight to Cincinnati, then on to LAX and finally to Kauai. I'm almost all packed - just a few toiletries and electronics to organize, the meds are all set and head coverings are clean and ready.
So what's the hitch, you ask? Tumor markers...that nasty CA27.29...has risen dramatically in the past few weeks, now topping 1000. Carboplatin appears to be a bust, the generic Actos has not made it work better, and so we will be creating a new plan for when we get back from Kauai.
The current thought is weekly Abraxane and Gemzar, same as the carbo - 3 weeks on, 1 week off. I will have a CAT scan either the 21st or 22nd to set another baseline. Dr. Walsh will discuss this with Dr. Chen. I think this protocol will mean what little hair I do have is soon gone, along with eyelashes and eyebrows...boohoo.
I am going to lobby for some chemo sensitivity testing on my tissue samples. Surely there is a chemo that my tumor cells will detest, I'd like to discover which one sooner rather than later. I feel like we are throwing darts, hoping something sticks. There are still lots of chemos that could be the right one.
In the meantime, we are going to have a fabulous trip and forget about this nastiness as much as possible. Soon to be entering the "no cancer" zone!
Aloha, friends!!!
So what's the hitch, you ask? Tumor markers...that nasty CA27.29...has risen dramatically in the past few weeks, now topping 1000. Carboplatin appears to be a bust, the generic Actos has not made it work better, and so we will be creating a new plan for when we get back from Kauai.
The current thought is weekly Abraxane and Gemzar, same as the carbo - 3 weeks on, 1 week off. I will have a CAT scan either the 21st or 22nd to set another baseline. Dr. Walsh will discuss this with Dr. Chen. I think this protocol will mean what little hair I do have is soon gone, along with eyelashes and eyebrows...boohoo.
I am going to lobby for some chemo sensitivity testing on my tissue samples. Surely there is a chemo that my tumor cells will detest, I'd like to discover which one sooner rather than later. I feel like we are throwing darts, hoping something sticks. There are still lots of chemos that could be the right one.
In the meantime, we are going to have a fabulous trip and forget about this nastiness as much as possible. Soon to be entering the "no cancer" zone!
Aloha, friends!!!
Wednesday, January 30, 2013
Our Road to Kauai
 |
| Little kitchen - sitting area |
 |
| Beautiful seashore
|
 |
| Our suite with lanai over looking the Bay
We were planning to go to Hilton Head or some other warm location along the eastern seaboard but the extended forecast for now through the 18th promised lots of temps in the 60s unless we went all the way down to Miami, which would require tickets and $300 a night accommodations if we wanted to have an oceanview hotel room.
Well, guess what? It's not that much more to cross the Pacific and head to Hawaii. The accommodations are half the price and who wouldn't rather be in Kauai than Miami? And Rick will get to play golf so he is one happy camper.
And today I finally got the super drug that should mean the end of the nausea that I've been putting up with since starting this chemo protocol. Emend is a wonder drug and if it works as well as before, I am finished addressing the porcelain goddess.
So off we go on 2/7 and head to our favorite island. The details are almost complete. The tickets are purchased, the car is reserved, the cottage is reserved and I just need to reserve our ride to the airport and PACK!!!
|
Monday, January 28, 2013
Mets are melting!
Like the wicked witch in the Wizard of Oz, it appears those pesky brain mets are actually melting away! My PA panicked us last Wednesday after he looked at the brain MRI, but apparently all was not as bad as it seemed. I saw Dr. Zhou, the Radiation Oncologist, this morning and she showed me the pictures. There are 5 remaining mets, the biggest is 1 cm. It has a little swelling around it so I will take 2 mg of decadron to hopefully eliminate it. She thinks my occasional nausea is coming from the chemo and not from my brain mets. I'll keep taking the anti-nausea meds as needed and monitor the situation. Apparently the radiation continues to work for several months after the treatment, so we will be expecting them to disappear over time.
And the best news is that we can plan another little junket after I finish this cycle of chemo. We are thinking about Hilton Head, but the weather may not be cooperative. It needs to be in the 70s for me to think about enjoying the sunshine on a beach. So I am looking for alternatives, maybe an island like St. John's or St. Thomas. I think we want to keep it "American" and not an excessively long plane ride. And there must be golf for Rick!
And the best news is that we can plan another little junket after I finish this cycle of chemo. We are thinking about Hilton Head, but the weather may not be cooperative. It needs to be in the 70s for me to think about enjoying the sunshine on a beach. So I am looking for alternatives, maybe an island like St. John's or St. Thomas. I think we want to keep it "American" and not an excessively long plane ride. And there must be golf for Rick!
Wednesday, January 23, 2013
Loved Florida, but it's a big dose of reality today
We got back on Sunday from ten days in Florida - glorious warmth and sunshine, at least most of the time. We spent our first few days with our friends Bob and Joyce at their wonderful home in West Palm Beach. Enjoyed a couple of nice dinners including at Seasons 52 - one of my favorite Florida restaurants. All the entrees are less than 450 calories and the desserts are presented in double shot glasses - just enough to satisfy your sweet tooth without wrecking your waistline.
Then we moved on to Marco Island, one of the nicest beaches on the gulf side. We spent three nights there, and I have to tell you that Rick spent six hours in a beach chair under an umbrella. I can't even imagine the last time he did that. He would normally go play golf and then meet up with me later on the beach. But it was exceptionally relaxing and he enjoyed every minute!
We then drove up the coast to Lutz, north of Tampa. He played golf with the guys, my friend Ann and I met a couple of blogger friends for lunch, and walked around the mall a bit. The temperature was heading downward so we didn't get to enjoy their pool. As a matter of fact, I was wrapped in a blanket most of the time. The tile floors gave off a chill that I couldn't shake.
And I wasn't feeling so great through most of the trip. Daily nausea attacks and limited appetite made me a very fussy houseguest. There's not a whole lot that tastes good these days, although I did discover ice cream, mashed potatoes and gravy, scrambled eggs and mac & cheese. And...Rick is off to the store to get fixins for Chinese Pie. I think it's something I will enjoy and it will be fun to watch him whip it up!
Yesterday I endured a brain MRI - and endure is the word. I've never had one and it has to be the most uncomfortable test ever. The pounding of the magnets was matched by the attempt to listen to music through headsets. All in all, it just sounded like a cacophony and I couldn't wait for the 45 minute test to end. Afterwards, we went to Friendly's because I had earned a treat - a "happy endings" sundae with chocolate and coffee ice cream, hot fudge, whipped cream, nuts and a cherry! I almost licked the dish - it was the best thing I tasted in days.
Today I started the second round of weekly carboplatin treatments. We were there at 8:00 promptly to try and minimize the waiting. But alas, our PA was late so we were there for 3 hours for a 30 minute treatment. Labs, exams, pre-meds...it just takes time. And the PA noticed one of my pupils was smaller than the other, he went and looked at the MRI pictures and the brain mets are back, or were never gone completely. I'm back on 2 mg of decadron a day and I'll find out next week what's next as far as treatment for the mets. I didn't have a discussion because there was no formal report and the Radiation Oncologist wasn't on site. Next week...
Then we moved on to Marco Island, one of the nicest beaches on the gulf side. We spent three nights there, and I have to tell you that Rick spent six hours in a beach chair under an umbrella. I can't even imagine the last time he did that. He would normally go play golf and then meet up with me later on the beach. But it was exceptionally relaxing and he enjoyed every minute!
We then drove up the coast to Lutz, north of Tampa. He played golf with the guys, my friend Ann and I met a couple of blogger friends for lunch, and walked around the mall a bit. The temperature was heading downward so we didn't get to enjoy their pool. As a matter of fact, I was wrapped in a blanket most of the time. The tile floors gave off a chill that I couldn't shake.
And I wasn't feeling so great through most of the trip. Daily nausea attacks and limited appetite made me a very fussy houseguest. There's not a whole lot that tastes good these days, although I did discover ice cream, mashed potatoes and gravy, scrambled eggs and mac & cheese. And...Rick is off to the store to get fixins for Chinese Pie. I think it's something I will enjoy and it will be fun to watch him whip it up!
Yesterday I endured a brain MRI - and endure is the word. I've never had one and it has to be the most uncomfortable test ever. The pounding of the magnets was matched by the attempt to listen to music through headsets. All in all, it just sounded like a cacophony and I couldn't wait for the 45 minute test to end. Afterwards, we went to Friendly's because I had earned a treat - a "happy endings" sundae with chocolate and coffee ice cream, hot fudge, whipped cream, nuts and a cherry! I almost licked the dish - it was the best thing I tasted in days.
Today I started the second round of weekly carboplatin treatments. We were there at 8:00 promptly to try and minimize the waiting. But alas, our PA was late so we were there for 3 hours for a 30 minute treatment. Labs, exams, pre-meds...it just takes time. And the PA noticed one of my pupils was smaller than the other, he went and looked at the MRI pictures and the brain mets are back, or were never gone completely. I'm back on 2 mg of decadron a day and I'll find out next week what's next as far as treatment for the mets. I didn't have a discussion because there was no formal report and the Radiation Oncologist wasn't on site. Next week...
Tuesday, January 8, 2013
Maybe, a reason
When you get diagnosed with breast cancer, you can't help but wonder what caused it, why me, is it genetic... In my case the BRCA testing didn't reveal anything genetic. But this article got me thinking...I may have been given DES during my second pregnancy.
http://www.cancer.gov/cancertopics/factsheet/Risk/DES
Some of you know that my first pregnancy ended at 6 1/2 months and resulted in the birth of a premature little girl who died three weeks after birth. That was a troubled pregnancy and I am sure I was given something to prevent early labor, as I had bleeding and cramps. When I got pregnant again several months later, I clearly remember being given a prescription for "hormones to make sure it doesn't happen again." It would be almost impossible to go back 43 years and find a record of my prescriptions. And I doubt the OB/GYN would even be alive at this point.
Fortunately, only one of my children was probably exposed to DES...my oldest son. Unless...we all got it in our beef:
http://www.asas.org/docs/publications/raunhist.pdf?sfvrsn=0
I'm not going to fret over it because what's done is done. But it does show, once again, that we never REALLY know about long-term consequences of drugs until millions have been exposed and the harm starts to appear.
One word of advice - keep track of the drugs you've taken...forever.
http://www.cancer.gov/cancertopics/factsheet/Risk/DES
Some of you know that my first pregnancy ended at 6 1/2 months and resulted in the birth of a premature little girl who died three weeks after birth. That was a troubled pregnancy and I am sure I was given something to prevent early labor, as I had bleeding and cramps. When I got pregnant again several months later, I clearly remember being given a prescription for "hormones to make sure it doesn't happen again." It would be almost impossible to go back 43 years and find a record of my prescriptions. And I doubt the OB/GYN would even be alive at this point.
Fortunately, only one of my children was probably exposed to DES...my oldest son. Unless...we all got it in our beef:
http://www.asas.org/docs/publications/raunhist.pdf?sfvrsn=0
I'm not going to fret over it because what's done is done. But it does show, once again, that we never REALLY know about long-term consequences of drugs until millions have been exposed and the harm starts to appear.
One word of advice - keep track of the drugs you've taken...forever.
Wednesday, January 2, 2013
Things are running a little slow here today
We arrived at Dana Farber at 10:15 and it's now 12:30 and I'm still not hooked up. Ugh! The impact of the holiday is taking its toll. I did just now get my pre-meds and the saline is now connected. Everything is just slow and my laptop, which has a fairly extended battery life, is going to die before I'm done.
My labs look good although Red Blood Count is a little below the range. My whites are fine, my hemoglobin is teetering on the low end of the range, and my lymphocytes are way low. My glucose was 105 (go me!) All that said, chemo is a go for today. Dr. Walsh reduced my decadron from 6 mg to 4 mg. Maybe by the time I've had a few more treatments, we'll be able to eliminate it completely.
I lost two pounds since last week, probably because nothing tastes particularly good (except the Popeye's chicken and mashed potatoes I had yesterday) and many foods are too dry for me to enjoy. The weight loss is making up for the pound a week I gained last summer when taking Xeloda. I hated to see a chemo fail, but I would have been a blimp if I had continued on it for much longer!!! Even my beloved popcorn seems to be hard to swallow, as do other salty foods. I'm beginning to understand my good friend's preference for sweet things. Maybe I can jazz up that popcorn to make it more appealing! Or I'll just have to eat all that sugar-free chocolate I got for Christmas...lol
I had some mild nausea after the last treatment - a little like morning sickness. A little compazine and some food usually took care of the problem. Hopefully this treatment will be no worse. I'm counting on it being uneventful - we have planned a trip to Florida after my next treatment (we are leaving on the 10th for 10 days). I am looking forward to some nice warm sunshine and beach time.
My labs look good although Red Blood Count is a little below the range. My whites are fine, my hemoglobin is teetering on the low end of the range, and my lymphocytes are way low. My glucose was 105 (go me!) All that said, chemo is a go for today. Dr. Walsh reduced my decadron from 6 mg to 4 mg. Maybe by the time I've had a few more treatments, we'll be able to eliminate it completely.
I lost two pounds since last week, probably because nothing tastes particularly good (except the Popeye's chicken and mashed potatoes I had yesterday) and many foods are too dry for me to enjoy. The weight loss is making up for the pound a week I gained last summer when taking Xeloda. I hated to see a chemo fail, but I would have been a blimp if I had continued on it for much longer!!! Even my beloved popcorn seems to be hard to swallow, as do other salty foods. I'm beginning to understand my good friend's preference for sweet things. Maybe I can jazz up that popcorn to make it more appealing! Or I'll just have to eat all that sugar-free chocolate I got for Christmas...lol
I had some mild nausea after the last treatment - a little like morning sickness. A little compazine and some food usually took care of the problem. Hopefully this treatment will be no worse. I'm counting on it being uneventful - we have planned a trip to Florida after my next treatment (we are leaving on the 10th for 10 days). I am looking forward to some nice warm sunshine and beach time.
Subscribe to:
Comments (Atom)