Nodular sclerosing Hodgkin lymphoma (NSHL): What can I expect?

Posted by melbishop @melbishop, Aug 9, 2020

I'm new and just had a ct scan where they said I had a few enlarged lymph nodes and now have appointments with Surgery and Oncology…I'm starting to worry when I see all this stuff and don't know what to expect.

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@melbishop I hope it is a good afternoon wherever you are. I have stayed back hoping that you are doing okay while I try not to be intrusive. Just know you are being thought of and wished the best. No reply necessary or expected. Nancy

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@melbishop So often thoughts of you come to mind and I am hoping that things have gone well as you progress through your treatments. Your difficult year was complicated even more by Covid and all the exceptions required of all of us. I hope you have remained safe and well in all of that. For now I want to wish you happiness as you celebrate this wonderful season and take your journey into the year ahead. If any of us here at Connect can help you along the way, you haven’t been forgotten.
Peace and blessings of the Season, Nancy

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I have had two rounds of Brentuximab vidotin of two and four cycles, and in between, 6 cycles of AVD. That shrank the lymphoma which is above the diaphragm, but it is still there! Now I have been on nivolumab for almost a year. Headed for another PET scan next week to assess progress. Where do I go from here if the tumor is still active?

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@hnipper1

I have had two rounds of Brentuximab vidotin of two and four cycles, and in between, 6 cycles of AVD. That shrank the lymphoma which is above the diaphragm, but it is still there! Now I have been on nivolumab for almost a year. Headed for another PET scan next week to assess progress. Where do I go from here if the tumor is still active?

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Welcome, @hnipper1. I can imagine you're concerned about your upcoming PET scan to review changes to the lymphoma after a further year of treatment with nivolumab (Opdivo) after chemo.

You'll notice that I moved your question to this existing discussion about nodular sclerosing Hodgkin lymphoma (NSHL). I did this so you can connect with @melbishop @hillary who have the same type of lymphoma as well as past posts from @grandpabob @mepowers and others who have had lymphoma.

Fingers crossed for the PET scan results and a good discussion about next steps with your cancer care team. When is your appointment?

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@colleenyoung

Welcome, @hnipper1. I can imagine you're concerned about your upcoming PET scan to review changes to the lymphoma after a further year of treatment with nivolumab (Opdivo) after chemo.

You'll notice that I moved your question to this existing discussion about nodular sclerosing Hodgkin lymphoma (NSHL). I did this so you can connect with @melbishop @hillary who have the same type of lymphoma as well as past posts from @grandpabob @mepowers and others who have had lymphoma.

Fingers crossed for the PET scan results and a good discussion about next steps with your cancer care team. When is your appointment?

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My PET scan is 2/3/22.

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@hnipper1

My PET scan is 2/3/22.

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I'll be thinking of you on Thursday. If you are willing, I'd like to hear how it goes and what you learn after discussing with your oncologist.

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