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

Aa I commented on another thread, my PET scan of 6/3/2022 showed new activity in another node - the subcarinal, near my esophagus. In a recent Zoom with my local oncologist and a Mayo hematologist, we have decided to add bendamustine to my nivolumab regimen. Anyone here on that drug? Seems to have more side effects (in reading about them) than some other chemo drugs, but I have seen a paper that showed good effects with nivolumab. So here goes!

Hnipper, other members are talking about Bendamustine in this discussion:
- Treatment for NHL: Rituximab & Bendamustine https://connect.mayoclinic.org/discussion/treatment-for-mzl/

Did you start the new treatment?

Colleen, thanks for checking in. My first infusion of Bendamustine will be coincident with my regular infusion of nivolumab on 8/24. That will be followed by another infusion of Bendamustine on 8/25, and then more of the same 4 weeks later in September. Interested of course in the outcome, but also interested in side effects (if any). We shall see and hope for the best!
Henry

Hi I have unfavorable hodgkin's lymphoma nodular sclerosis I’m stage 2 I did 2 round of abvd chemo and 20 radiation I’m in remission for a year I had radiation shot at my chest and neck. Under my arm. I experience. Unable to cough did anyone develope unable to cough And I went to ent they told me I have no sensation on the right side they don’t know how to fix it I have another ent apportionment in Philly hopefully they will be able to fix it I’m so scared of getting sick

@xxfoxy1234, welcome. I moved your question about not being able to cough to this existing discussion in the Blood Cancers support group:
- Nodular sclerosing Hodgkin lymphoma (NSHL): What can I expect? https://connect.mayoclinic.org/discussion/new-lymphoma/

I did this so you can more easily connect with other members like @hnipper1 @mepowers @melbishop @annalise, who have experience with nodular sclerosis Hodgkin lymphoma and ABVD chemotherapy and radiation.

I'm glad to hear that you are currently in remission, but I understand your fear not being able to cough and getting sick again. I hope the ENT can offer an explanation. You might wish to ask about working with a speech language pathologist. They work with patients who have trouble with swallowing, eating as well as speaking. I wonder if they could help with the mechanism of coughing. It may be worth asking about.

Thank you so much for moving my question Is there any other way for me to start coughing . Sooner beside speech what cause.it not being able to cough did chemo or radiation was the cause for the no sensation of the right side of my neck I had a tumor on my neck and in my chest

Hi my last ent sent me to speech Then speech sent me to pulmonary it felt like a was on a roller coaster I got a new ent in Philadelphia I have appointment in 2 weeks hopefully someone can get a handle on this I just want to cough again I don’t know if radation cause damage to my neck or chemo did all I know I have no sensation to the right side of my neck

Hello! I understand how frustrating that can be. I had a time period where coughing was difficult and where I would regularly lose my voice. I learned a couple tricks like pressing on my neck in different areas to help with coughing or clearing my throat. For me pressing gently between my collar bones helps when clearing my throat or to help my vocal chords when I have a weaker voice. I'm not sure if that is a common thing, or just with the way my throat was impacted. I also found that having grace around using antihistamines and allergy meds was helpful as these can help with mucus. Cough drops and hot tea with honey are also always in stock for me as well. I hope you get some answers!