Jul 30, 2012 - 1:03 am
Dear Friends…..I am so sorry I let you all think I had just fallen off the face of the Earth. I don't mean to go all Jason Bourne on you guys, but I know from experience that hospitals and large oncology practices pay people to monitor forums like this one – and this one in particular – and therefore, I can’t be totally forthcoming, and I apologize for that. However, here is what has been going on, in a nutshell:
Back story, for those who are really new and don’t know me: Diagnosed Stage IIIc in Sept of 2009. I had surgery, including a bowel resection, lots of complications, and the traditional cocktail of Carbol/Taxol. Then I did a year of Taxol maintenance. I was NED, officially, beginning in March of 2010 and I was accepted into a vaccine study at Memorial Sloan Kettering in NYC. My CA125 was checked monthly and I had CT scans every 90 days. Everything was always perfect. My CA125 did jump up a bit (to 18) when I had hernia repair surgery, but quickly dropped back down and hung out around 10-12 thereafter.
I started Carbol/Gemzar therapy right away (combo one week, followed by Gemzar only on the second week, then a week off) and have another 9 weeks to go. My PET scan last month showed only 2 spots left, and both of those are smaller. My CA125 is 9, but is obviously no longer an indicator for me. I’ve had several HE4 tests and they were also “normal.” The expectation, from more than one doctor, is that I will again achieve complete remission. Having to rely strictly on imaging studies to monitor my disease is very frightening, however. I feel like I imagine a pilot must feel, when he can’t see anything and has to fly by instruments.
The chemo this time has been pretty rough on me. I’ve had one blood transfusion, plus complications with my port. In fact, I go in tomorrow to have port #3 removed and replaced with #4. (My first port eroded thru the skin, port #2 was removed during my hernia repair surgery, and the one I have now was just placed in April.)
I was diagnosed about 10 days ago with a blood clot in my neck, where the port is located. I have been giving myself Lovenox shots for over a week now, and was on Coumadin before it was determined last week that the port would have to come out. All told, I’ve been in pain for over 2 weeks, due to the blood clot. So….not a very fun-filled Summer. This time around, chemo has literally been a pain in the neck for me, in addition to the “usual” side effects.
I was so saddened to hear about Clamryn (Linda E). After losing Libby, Linda P, Marty White, and Rooker Bird, Nancy K, Linda Dorion, plus all the others that have passed away since I joined in late 2009, I had already started to feel like it really was just a matter of time. Then I got the news that I had a recurrence, and that really messed with my head. Recurrence is harder to deal with than the initial diagnosis, I think, because it takes the C Word (“cure”) off the table. From now on, I know that I will be dealing with a chronic disease. I was in total remission for exactly 2 years. I hope the next one is that long. And the one after that. Common sense, however, tells me that isn’t likely. In the meantime, I hope I can find a promising clinical trial. I’ve heard that even though I am BRCA negative, some types of OC appear to mimic the BRCA mutation and might benefit from PARP inhibitors. One indication is an exquisite sensitivity to platinum therapy, which I seem to have. I am at least going to look into it.
For all you newbies…..I can’t stress enough how important it is to advocate for yourselves. You live in your body. You know it better than anyone else. And you are MUCH more vested in the outcome of your treatment than anyone else.