On Monday I went back to Dana Farber to get the meds for my trial. It's pretty complicated. I take the PARP drug 2 times a day for 7 days, and I take the chemo drug once per day for 5 days. Because the dose for chemo is so exact, I have to take 7 pills of the chemo alone just to get the right dose! I have a boatload of anti-nausea meds that I can take, and some pain medication because my chest has been hurting more (especially while taking deep breaths).
My doctor began our conversation by telling me that the diagnostic CT scan I took a week ago showed that the tumor was bigger than we originally thought from the first CT scan (which was about 6 weeks ago). The original scan was not as clear as this one, so the discrepancy could be partly due to differences in imaging. It's also pretty likely that it has grown in the last six weeks. My doctor still felt comfortable with this course of treatment, but she asked that I let her know if I don't feel a difference within a week. In that case, we won't wait 2 months to do another scan. I'm really happy that she suggested it and I didn't even have to ask. She also told me not to be shy about letting them know if I'm having trouble or if I'm in worse pain. Not that I would be shy, but it's great to hear them say that. It really feels like they're partnering with me. I like her a lot and so far I'm happy with this change.
Yesterday was my first actual day of treatment. My doctor suggested I not go to work yesterday because I wasn't really sure how I was going to feel. I listened. It began at 6:30 AM, when I took an anti-nausea pill, part of the Emend set of pills. You might remember this from the first time I did chemo (I sure did). I was supposed to have this to start treatment, but I didn't have the prescription. I felt pretty sick that first week. By my second treatment, I had the Emend, and I wrote this post. Anyway, I started the Emend at 6:30 AM, then a half hour later at 7 AM I took the chemo drug and the PARP drug. I have to wait an hour before eating.
Later that morning, I felt kind of light-headed and woozy, but not really sick. In hindsight, I think that was the Emend (the first dose in the set is higher than the rest and this AM I didn't have the woozy feeling). I went out and got some soup for lunch and then at around 2:30 I started to feel pretty ookey and I had to take a nap. I had that nauseating feeling until around dinner time. I had a good dinner and started feeling better. At 7 PM I took the next dose of the PARP drug, which doesn't give me any noticeable side-effects as far as I can tell.
I woke up this morning and did it all over again. I didn't go to work because I wanted to get another day to figure out the timing of my symptoms - I didn't want to be stuck at work feeling sick. Today was definitely better. The lower dose of Emend is good - I didn't get the light-headed feeling. I didn't feel sick around 2:30, either. I lasted until 4:30, when I got really tired and took a nap. When I woke up, I did feel a little ookey, but nowhere near as bad as I felt yesterday.
So, I think I determined an interesting thing about anti-nausea meds. They are no bargain. The side effects of all of them are dizziness and headaches. Which would you rather have? I'm not sure! I definitely felt the difference with the lower dose today. I think I know what's up with the nausea, too. It's not part of the study, but I took some pain medication yesterday around noontime, and nausea is one of the side effects. I didn't take one today and I felt a lot better. So, I think that mystery is solved, too.
Anyway, I know that's kind of boring but I don't really know what else to say about the treatments. I suspect days 3-5 will be a lot like today and hopefully 6 and 7 will be even better because there is no chemo. I do one week on treatment, then 3 weeks off. As long as my bloodwork comes back okay, I start another course. One of the problems that these drugs cause is a drop in platelets, so they'll be looking for that when I get my blood drawn.
And, I think that's about it for now. My appointment was much more efficient on Monday, so I didn't get to make a lot of progress on my "Waiting Socks." The progress was so immeasurable that I forgot to take a picture. :-( These socks are going to take forever! Maybe that's a good thing.
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4 comments:
first! ;)
Your doctor sounds like a great match. Is there anything you can do to raise your platelets if your count drops?
I asked my doctor about that, but there doesn't seem to be anything I can do. I think if it was severe I could get a platelet transfusion, but usually they just delay the next round of treatment.
My daughter mentioned your blog to me the other night so I had a lot of reading to do to catch up. I completely agree with you - CANCER SUCKS!
You have the same mutation as I do. I was dx'ed stage IIIc at 50, July of 2009.
I'm a believer in trials. I did a chemo trial so they added Sutent along with the taxol. Also did the AC. I'm very interested in the PARP inhibitors - I hope it's the answer for those of us with BRCA 1/2.
I'm wishing you the very best. It sucks but you're fighting back.
I also wanted to mention that I find the discussion boards on BreastCancer.Org very helpful. Lots of women giving support to one another. If you happen to drop in my name is AnacortesGirl.
Megan, I'm just catching up. Sorry to hear about the latest diagnosis but it sounds like you are getting some great care with a good plan of action. I will keep you in my thoughts. If you need anything, let a local girl know will ya! I'd be happy to help if I can.
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