I saw the oncologist yesterday and wound up having a good cry in the office. That happened when he mentioned the possibility of trying the Navelbine again and then got a call that he had to leave the room to take. It actually gave me the time to collect my thoughts and be able to explain to him that, while I don't get deathly ill and wind up in the hospital with side effects of Navelbine and other chemo regimens, I do feel just awful. For 5 of 7 days in a Navelbine week I simply can't get comfortable - not in any position, not even for 5 minutes. Off chemo if I manage my pain meds and my meals just right I can sit and talk or sit in the car or sit at my desk for unlimited periods of time. I can interact with family and friends. I can work on a quilt. I can enjoy a movie. I can laugh. So when he came back in the room I explained that to him. I explained that I would deal with the Navelbine if there were a REASONABLE chance of a SIGNIFICANT response and SIGNIFICANT increase in survival. That's not what Navelbine offers, though, so I'm done with it. The only drug approved for my cancer that we haven't tried is Gemzar (gemcitabine). Most prominent side effect is low platelets. The usual schedule is weekly for 3 and then off 1 but the oncologist says that counts are usually too low to give the chemo on the 3rd week so that, in this case he recommends every other week treatment. Infusion is about an hour. Some people get a flu-like syndrome a few hours after leaving the doctor and, if this includes fever, no more Gemzar. I told him I'm willing to try anything once - so we're scheduled for this August 18th. If it doesn't find some way to make me miserable it would be every two weeks until whenever. Meanwhile, I continue on Zometa to try to help with the bone pain and prevent fractures.
My insurance is confused about Hospice and right now is saying they won't cover it while I'm on treatment. I really don't need any of their specific services right now, so I'm OK with whatever happens with that. My doctor will refer me for traditional hospice when we agree that we will not pursue any further treatment, when I'm less active than I am and when pain control becomes more than he wants to handle. Speaking of that, we've increased the Oxycontin to 20 mg twice a day so that maybe I won't have breakthrough pain. I'm still on the Ibuprofen three times a day and, as I said above, when I take my meds on schedule I'm feeling pretty well.
I'm adjusting to my new work schedule without patients. Luckily, H1N1 novel flu looks like it will keep me busy for months to come. Friday, my last clinical day, was long and difficult. I forgot my 2 pm Ibuprofen and by the time I got home I was truly miserable. It took until mid afternoon on Saturday for me to even start feeling human again. But I did and the rest of the weekend was fun with good food, bad movies and family to enjoy.
That's where things stand this week. Next excitement will be after Gemzar on the 18th, but I'll report in before then.
Lisa
Wednesday, August 5, 2009
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1 comment:
My heart goes out to you ...
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