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

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?

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?

@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

@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

@melbishop It occurred to me that you might have had your second treatment yesterday. I was also wondering how your week continued after your first treatment. What changes are you seeing in your self as you get more into treatment?
Nancy

@melbishop, how is the flushing now 3 days later? Did it subside?

And, to both of you, Nancy and MelBishop, best of health and recovery.

@melbishop One more thing I might mention. For two to three days after taking the “Dex”, I noticed a decrease in my chronic pain issues and a significant increase in energy, sometimes a little difficulty sleeping for a night or two. There was never a “crash” as they wore off, just a gradual return to my normal level at that particular point in time. Again I must remind you that we are all different.
Best wishes, Nancy

@melbishop You May be the first “flush twin” I have had. All my life I have gotten what I call my “Royal Flush” after receiving steroids. Before four years on the weekly steroid Dexamethazone that is part of most if not all Myeloma treatments, I have always had that reaction from joint steroid injections in my knees and spine. Besides the rosy cheeks, there was always very warm feeling that would occasionally wake me as it started overnight.
You ask what can you do? Wait a day or two and it will be gone. And perhaps smile and enjoy your beautiful glow.
Seriously, I am so glad to hear that your first day of treatment went well. I hope you will keep us posted on how this goes for you.
Peace, Nancy

Hi. I am in recent remission from both chl and NHL, a complex lymphoma case. Reactions from chemotherapy differ, and, thankfully most patients don't experience all possible symptoms as you probably already know. I probably felt flushed at some point, during my 12 combined cycles of chemotherapy from March 2019 to August 2020.
I use both Google searches and of course consulting with my oncologist.
Reactions seem quite transitory; sometimes a predictable pattern of reactions will become apparent over the course of chemotherapy cycles. This has been my own personal experience. My fear of nausea never became problematic, but during the 2019 ABVD first cycle treatment protocol, I experienced other chemotherapy reactions unanticipated.

This is a valuable forum for patients going through medical issues, like cancer.

Feel free to reach out to me if you feel comfortable doing so. I have found that sharing these life changing experiences has helped in the healing process.

And, I am back riding motorbikes again after 25 years, and now 65 years old. Never thought that was possible, especially during my 8 days inpatient at the Mayo clinic!
Dreams do come true, and they most certainly will, for you.