Update Day 4 of Treatment for Richters Transformation

[ReneeSusan]

Had a major hick up day 4. The beginning of an anaphylaxis reaction. Chemo stopped. Rapid response team called and in my room in 2 minutes. Got IV benedryl, epinephrine, Pepcid. Things resolved pretty quick but the lymph nodes in my neck enlarged so they ordered an mri stat.

In the evening had another strange reaction. The nurse flushed my port and I immediately got chest pain, rapid heart beat and dizziness. Rapid response team came again with crash cart. Have to say I was a little overwhelmed at that point as that never happened before in the 13 years I have the port. They did ekg and chest X-ray. Ekg normal, BP was high. Still waiting on x- ray results. Then around 2 am I woke up with excruciating pain in my spine, neck with body aches Ugh! Finally called nurse at 3 am and they gave me Tylenol and tramadol.

A very eventful scary day and I am not sure how this will effect my treatment going forward because oncologist doesn’t know which drug caused the reaction as there are 3 being infused st once. I still have to have 1 more new chemo drug which is infused separately but waiting on doc because all on hold.

Remaining hopeful they have a good plan B

ReneeSusan

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[DriedSeaweed]

I don’t quite understand it all but I think they are doing the EPOCH to lower your tumor burden before CAR-T?

If I were in your shoes I’d ask what their goal is with the EPOCH and how much of a response they want to see before you can get going with the CAR-T.

Did they collect your T cells yet?

Hope the reactions calm down.

[Newdawn Administrator in reply to DriedSeaweed]

Things have moved on to Day 6 now;

healthunlocked.com/cllsuppo...

Newdawn

[DriedSeaweed in reply to Newdawn]

oh thanks. For some reason on my end it says it was posted two hours ago.

[Newdawn Administrator in reply to DriedSeaweed]

Yes I suspect it may have been in error because ReneeSusan had posted that update previously.

Newdawn

[ReneeSusan in reply to DriedSeaweed]

I think you are correct. According to some tests my tumor burden is quite high. And they need to get my wbc and lymphs really low.

No jot there yet to collect Tcells. Need more cycles of EPOCH or something else. This is a 6 cycle treatment. The goal is to get me to CAR-T as quick as they can, so if my response is good after 4 cycles then I guess we go to collect T cells.

Renee