So much for my diligence with updates... good news is I was too busy not being sick to get on the computer!
I saw Oncology yesterday and things are going reasonably well.
The good news:
- This week marks 12 weeks of remission for me - this is the longest I have sustained a remission in over 2 years.
- The chemo injections are not making me violently ill as the last few drugs did.
- My bone marrow is tolerating it beautifully (the only other drug that elicited a sustained remission put me in bone marrow failure and earned me an extra month (Christmas sadly) in the hospital fighting severe infections) and my liver is standing up beautifully.
- I'm eating about 75% of my calories at this point - the most ever since this started!
- We talked to him about the fact that when I get my injections (Friday) I then spend between 2 and 5 days basically bed ridden. I can get up and move about but I get very sore/sick very quickly unless I stay laying down/reclining. The tiredness is indescribable - I quite literally will fall asleep at the kitchen table. We're going to change 'chemo days' so that I can feel well for the weekends and sleep away a tuesday or wednesday instead but some weeks (like last week) it drags on all week... I was finally feeling a bit better and realized it was Friday - chemo day - again. This week however went MUCH better - I slept off Sunday but otherwise was in decent shape. Anyways - the bad news is his advice was (while he was very sympathetic about it and did say some people just get wiped out - something about it being an antimetabolite and at that point his words got too big even for me) that it's most likely something I will just have to cope with. I didn't expect a 'here this pill will fix it!' reply but had hoped for at least a 'it gets better over time'. Unfortunately we've given it time, it's not improving. He gently said that I may have to convince myself that sleeping and being sick for a few days is better than where I was 2 years ago, starving to death and living on a hospital ward. Point taken.