Sunday, May 05, 2019

Too nice for ICE

So, turns out, when you relapse FIFTEEN YEARS later, things aren’t as straight forward. There are multiple options, all of which qualify as best standard of care. My oncologist spent an hour (over his lunch break) with me on Friday going through the options. He had emailed several lymphoma specialists, which each gave a different recommendation. Great. In the end, he decided to send me up to Johns Hopkins for a consult.

Based on the emails he showed me, I think Hopkins is going to want me for their clinical trial. Reading about it, I think I might be game. It is an immunology based treatment, and early stuff shows very promising results. As a backup plan, I think his plan is a good one. We’lol see what Hopkins says. They have already been in touch, so hopefully I’ll get in toward the end of the week. Meanwhile, work travel, radiation oncology consult, and getting another port installed are on the agenda.

For the port, I’ll be going back to the guy that did the mediastenospy. We should be able to just go straight to surgery, since a) he just cut on me 10 days ago. I still have the steri-strips and 2) I know he has already considered where he’d put a port on my because he was critiquing the location (scar) from my previous on. My biggest concern is that I’ll schedule that on Monday, and then Tuesday, Hopkins will call and only have an appointment the same day.

I’m still wrapping my head around everything. I’m kinda glad this blog was still around since I never archived it or anything. But I’ve actualy been re-reading it. It’s funny what you forget after 15 years. In my head, chemo wasn’t so bad, I worked virtually full time the whole way through, and never threw up. But looking back, it did kinda suck. One of the options now, is a pretty brutal combo that given inpatient. Technically, its the standard line of treatment for relapse, but for relapses in the first 5    years. Not 15. My oncologist said I was “too nice for ICE” and he didn’t want to do that to me. Reading about patient expierences on ICE vs ABVD (what I did last time) vs the new options (Brentux... + brenmustine = BVB) or other combos with Brent, it’s a toss up. Some people sail through, other have horrible allergic reactions to Brent. And we are looking at 16 3-week cycles. Almost a year of this shit!


Blogger Unknown said...

I may be slightly biased... ok, extremely biased... but I hope you are a candidate for immunotherapy.

8:17 AM  

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