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Hodgkin Lymphoma was stable, now new activity

Blood Cancers & Disorders | Last Active: Jun 16 3:02pm | Replies (24)
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@hnipper1

Well, long overdue update to my situation. I've been on the bendamustine + nivolumab therapy for my nodular sclerosing Hodgkins since 2022, and my tumors have been slowly shrinking, but not enough to cry "remission!" Until this week when my doctor discontinued the bendmustine because my platelet count has dropped to 48, from the usual high 70s. (Yep, I know that even the 70+ range is low) But now I can tell I am clotting slowly from my fingersticks!
What now, you say? It's a waiting game to watch the platelet count recover for the next few weeks, we hope. I am also going to be consulting with my physicians about alternative courses of treatment, if any. In sum, I feel no different from before, just concerned about the future.

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Replies to "Well, long overdue update to my situation. I've been on the bendamustine + nivolumab therapy for..."
Lori, Volunteer Mentor | @loribmt | Jun 16 3:02pm

Hi @hnipper1. I can sense frustration from having to stop your current treatment. This may just be a time-out to give your body a chance to rest and regenerate before resuming.
It’s encouraging that the tumors were slowly shrinking without any new occurrences. But it also may be the opportunity to reassess the disease with your oncologist to see if there is another avenue of treatment to consider.

At 48, your platelet reading is getting down there in the ‘no knife juggling’ zone. Hopefully now that your body has a resting period you’ll start seeing a reversal in the numbers. If you notice that you’re bleeding more heavily from cuts, having a difficult time controlling the bleeding or seeing unexpected bruising make sure you tell your oncologist. If your platelets get too low, your doctor may suggest having a platelet infusions to help avoid any spontaneous bleeding.
Were your other blood numbers down as well?

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