Hodgkin Lymphoma was stable, now new activity

Hi @hnipper1. So happy to see you pop into the conversation, and with such a positive update! That’s a holiday brightener for sure to see that your NSHL is stable with the nivolumab/bendmustine regimen.

I know exactly what you mean about feeling so grateful to have been gifted extra years of survival! It is a gift like no other. For me it’s difficult to even translate the emotions into words!

So thank you for sharing your message of gratitude and encouragement! By doing so, you have just offered the gift of HOPE to others who might be diagnosed with Nodular sclerosing Hodgkin lymphoma.

Wishing you a wonderful holiday season with family and friends!

Hi, all,
I was reading submissions to the group today and realized that it has been a while since I commented about my NSHL - the new node that showed up. I am happy to say that since that time, my oncologist here at Creighton in consultation with those at Mayo has added bendamustine to my nivolumab routine. The result over the last two years is that the lymphoma seems stable, and in fact shrinking a bit each time I get a PET (now CAT) scan! Happy to say that stable is good! Writing this over Thanksgiving weekend seems appropriate and going into the Christmas Season, I consider that I have been given a wonderful gift of additional years of survival. I am very grateful, and try to pass that sense of gratitude to others around me.

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?

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.

Had more nivolumab yesterday and my labs showed my platelets are bouncing back into the 70’s. Updates to follow as warranted. Happy Thanksgiving to all!

Glad to say the interpretation was consistent with a relatively stable tumor. No new growth and no mets. The lung problem seems to be infectious (as I guessed) so we will see what develops with that area. My O2 sats are still very high (yesterday's was 100%) so pulmonary function is OK. My treatment for lymphoma in lieu of bendamustine is still a question as my platelet count has dipped to 57. I still got nivolumab last week, by the way, and that is good as it held the lymphoma steady for the most part. Next steps are to send the scans to the Mayo heme-onc consultant, so that will take a few days. Updates to follow.

CT scan is tomorrow, Thursday, 11/9. Fingers crossed. Probably will see the interpretation by Monday.

@hnipper1, did you have the CT scan yet this week or is that still ahead of you?

We are a year out from my last post, and the bendmustine has been slowly working to reduce the SUV and tumor size(s) with no spread and no new mets. This, until my last PET scan about two weeks ago when some activity was detected in my right lung. The activity was not specifically identified as a met, and I will get a CT scan with contrast next week to further characterize the finding. I have a productive cough that could be connected and my doctor thinks that pneumonia status post Covid-19 could be the culprit. More worrisome has been that my platelet count has dropped so low that yesterday's bendamustine was postponed until my platelets recover. I did receive my usual dose of nivolumab, however. I am also dealing with a low hemoglobin and HCT, as well as low RBC. Taking iron tablets has not raised the indices. Hoping that my situation improves so I can get back on treatments that were working! The plan is to consult Mayo heme-onc with the results of the CT scan and my other labs to see if we can discern a path forward. Overall I feel no different than last year when we added bendamustine. We had to work through the correct infusion rate of bendamustine and as well, the correct dose of steroids and fluids to avoid the side reaction of dizziness and danger of falls after the infusion! Updates as warranted.....

Great news, @hnipper1.