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Hodgkin Lymphoma was stable, now new activity

Posted by hnipper1 @hnipper1, Jul 23, 2022

My Hodgkin Lymphoma, Stage II, above the diaphragm, with no mets, was diagnosed in January 2020. It has been treated with AVD, Brentuximab-vidotin, and now Nivolumab for 18 months. A PET scan on June 3 showed new activity in a subcarinal lymph node near the esophagus. This is the first sign of spread to a new node. Has anyone else had experience with this type of spread? Until now, the tumor has been 'stable'.

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hnipper1 | @hnipper1 | Nov 14, 2023
In reply to @hnipper1 "CT scan is tomorrow, Thursday, 11/9. Fingers crossed. Probably will see the interpretation by Monday." + (show)
@hnipper1

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

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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.

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hnipper1 | @hnipper1 | Nov 18, 2023
In reply to @hnipper1 "Glad to say the interpretation was consistent with a relatively stable tumor. No new growth and..." + (show)
@hnipper1

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.

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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!

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hnipper1 | @hnipper1 | Jun 16 7:46am
In reply to @hnipper1 "As I wrote in another thread, we are adding bendamustine to my nivolumab regimen. Both oncologists..." + (show)
@hnipper1

As I wrote in another thread, we are adding bendamustine to my nivolumab regimen. Both oncologists did not think another biopsy was needed, and seem sure that the new node is Hodgkin Lymphoma, Here we go!!!!

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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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Mentor
Lori, Volunteer Mentor | @loribmt | Jun 16 3:02pm
In reply to @hnipper1 "Well, long overdue update to my situation. I've been on the bendamustine + nivolumab therapy for..." + (show)
@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.

Jump to this post

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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