New Challenges, New Acronyms

“If you start to take Vienna – take Vienna!!”

Napoleon Bonaparte – on keeping focused on a goal, applying overwhelming force, and not getting distracted.

 

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November 17, 2016
It’s been months since I updated this, mainly because not a lot has happened! Things have been pretty much just moving along, but 5 months is long enough to warrant an update.
In my last post, I talked about the multiple paths forward. Well, happily, Plan A worked. Ibrutinib daily, Rituxan monthly is doing the trick. Everything is under control, and I responded just as quickly this time as last. So 4 pills a day, an infusion a month, while we work on the next phase, cleverly labeled Plan A.1 last time.

Acronym One: DLI

That is having a series of procedures, where I get what are pretty much “booster shots” of the stem cells from my previous donor. The process, called a Donor Lymphocyte Infusion, or DLI, gives me increasing amounts of his cells until I reach the point of having Graft vs. Host reactions, which then put my cancer out of commission. This could take a couple times, or maybe even 5-6, while monitoring closely to make sure the GvH doesn’t go too far.

Getting into the process has been very slow. I was originally planned to start this month, but insurance approvals took a long time, and now we working through the bone marrow bank to see if my donor is willing to go through the process again. If he is, it will probably be after the holidays before this process gets started.

Acronym Two: IVIG

Overall, since the transplant (and relapse) my health has been very good. I work full time (plus some OT), exercise, and pretty much enjoy life. However, each time I’ve travelled, I’ve wound up with a nasty head cold, which initially responded to treatment but then bounced back, settling in my chest. This has happened WAY too many times. It takes weeks to get over the cold, and the cough lasts months. Enter another new procedure in our plans: Intravenous Immunoglobulin, or IVIG.

This has been around a long time, but is now used a lot more, including with transplant patients. Antibodies from thousands of blood donors are pooled together, then given to those of us with low immunity. According to both one of my PA’s and CNP’s, these treatments can have amazing results. I started these this week, and have one monthly for 6 months. It was pretty much 100% like my Rituxan treatments, same combo of stupid/groggy/hyped up premeds, and a 4 hour drip. Just the usual post-pre-med aftereffects, problems sleeping and getting back into normal rhythm, which I’ve done over 4 dozen times before.

While I really feel good, between the minor side effects of my treatments, and lingering long term colds, I don’t have that really peppy feeling I did before I relapsed. I’m hoping that getting my immunity back up to par will help me get back to that version of normal. I guess that’s Normal 3.0, not Normal 4.0, like my latest Cure column talks about. (Bragging, that one made it into a print edition!)

Anything Else?

Yes. But it’s a surprise. You’ll have to hang on until I get the next update done, to see what else I’ve been doing besides family, work, home, and cancer!