Hi Everyone,
It’s been about a week since my last update. I ended up seeing a hematologist and I’m happy I did because my white blood cell count and my ANC dropped significantly. In fact, they kept me there until I was cleared for Neupogen by insurance, and I received that to try to boost things to a safer level. It did rise within two days (and ticked up a little on the fourth day) but I am still neutropenic and have a uphill climb until I reach normal levels. I got up early this morning and went in for bloodwork again and am still waiting to hear the results. Between the two teams of doctors the consensus is this is LON (latent onset neutropenia), a rare(ish) side effect of Rituxan. They have now removed the second dose of Rituxan from the MS protocol for HCST in Chicago to avoid this negatively effecting future patients as this was a trend with those of us treated with the “Rituxan sandwich” on either end of the chemo to ablate the immune system. The only good thing is the reason they added the extra days is to increase efficacy of the treatment and so my long term benefits may ultimately be a blessing.
The shots are brutal and I was quite sick for a few days, I still can barely eat. I am glad it’s over and they would pretty much have to drag me kicking and screaming to get it again tomorrow so lets hope it is not necessary. They also wanted to do a bone marrow biopsy which I declined. It seemed overkill as the most likely explanation is from the drug. If this doesn’t rectify itself in a few months then we can explore other rationals and they can have at it at that time. My hormone levels are temporarily all out of whack too which is caused by a combination of things but makes me a little cranky and irritable. This is contributing to the reason I’m not feeling well.
So…not my most favorite couple weeks. I remember about a year ago I spoke with someone who did this and she told me there will be a few times when you think, what in the world did I do to myself…and I think I’m pretty much there at the moment. I’m slightly worried I traded one awful thing for another. Then I remember not being able to drive my kids to soccer because I couldn’t see 4 feet in front of me and then I realize my choices were limited and I made the best decision I could.
Anyway, I want to be honest and not sugar coat a difficult thing because it does a disservice to those considering it. This is not without issues and while I do believe it arrests disease (and possibly is a near cure), it is not easy. You have to go into it knowing for about a year life kind of happens around you in the hopes that the future is brighter than it would have otherwise been.
So, we are going to Carmel tomorrow for a change of scenery unless things go south with my numbers. I’m going to follow all restrictions but I hope to have some really fun family time in a beautiful place!!! Hope all of you also have a great week and I’ll update soon with hopefully some better news!!!
Jennie's MS Journey 