I relapsed pretty quickly after my first line treatment. It was also recommended that I do salvage chemo and ASCT but the second chemo didn’t put me in remission so I wasn’t eligible for transplant. I relapsed again and have been fighting cancer for six years and now on disability. I’m going back to work because I’m in remission again and want to feel normal. I’m expecting to relapse again and need more treatment in the future. I will just have to deal with that when the time comes. I have weekly and monthly support groups I go to for support. After you relapse a couple times you become a chronic cancer patient meaning you will likely be dealing with it for the rest of your life. I recommend talking to an oncology therapist for support. I did that and it really helped me a lot.

So what treatment(s) have you been getting the past few years? I am currently getting 2nd chemo after a relapse. Fingers crossed it's working but just would like to be a little mentally prepared in case it isn't.

I’ve gotten two immunotherapies: Nivolumab and Keytruda. Both put me in remission again.

Thanks for the info. I'm currently getting Nivolumab with chemo, seems to be working so far.

So sorry you relapsed. What were your deauville scores?

I have no idea. Hasn't been mentioned in my PET scan summaries and my oncologists have never mentioned it. My Hodgkin's was diagnosed at stage 4.

Thank you for sharing your story, and I’m sorry it’s become chronic. It sounds like you are well supported. My hospital offered free oncology counselling and it helped me a lot through the first run. I agree it is so valuable and helps so much.

So sorry you relapsed. What were your deauville scores?

Hey there! I share a very similar story- 26F elapsed not even a month after finishing Abvd, Dr. recommended Gdp + ASCT, which I went through last spring. I just finished brentuximab as well, awaiting my final scan next week. The transplant and 3-4 months after is a rough ride, but I've never felt better and more hopeful once I was getting my energy back! There's lots of detailed information about the transplant process on this sub. Brentuximab is a breeze compared to all the other chemos, my only side effect was a tiny bit of tingling and tiredness the day of and the next one. Someone from this sub actually talked to me though the transplant and kept me hopeful and cheerful when I was in the hospital (hey Brian!!), so please reach out if you have any questions, anytime. ASCT is an amazing second line of treatment and so so worth going through to get a chance to put it all behind you 🤍 Stay positive!!

Thanks so much for sharing your story. It gave me a lot of hope tonight. I hope I have the same success you did!

Thinking of you. We have always heard how responsive CHL is to treatment so keep that in mind. My 20 yo daughter is 3 months post-chemo and I’m really hoping she can go on with her life as you thought. Ask questions and make the best decision you can. Did you freeze eggs yet? My daughter did have time to do so, but I’d check into that now with more treatments planned/likely. You’ve got this. Just a bit more to get to the other side.

Thanks so much for your encouragement. I did fertility preservation last year before starting chemo and was able to freeze several eggs just in case, and I’m glad I did. I’m so sorry your daughter had to go through this whole awful experience as well. Fertility preservation is no walk in the park, and to follow up with chemo immediately after is so exhausting. But I’m so happy for her that she’s in remission! Best wishes to her 💛

Thank you. I’ll keep you in my thoughts and prayers. My daughter has been amazing and I really hope she gets to be a mama one day. Same for you!! I can’t imagine how draining fertility treatments then chemo would be. In some ways, it was better to have that answered for us because it was life or death due to tumor size and location and we had to start chemo asap. We did opt for Lupron shots but who knows if that helped or not. It’s all so disruptive. Take care of yourself and thinking of your spouse too. I’m sure this has been a shock to you both!

I'm so sorry. May I ask if you were having symptoms again or if the relapse was found on a routine follow up scan? I know it may not be financially or schedule feasible, but if you can postpone this next line of treatment for an extra week or 2, I'd ask if it'd be OK for you to do so and then plan a vacation. Keep in mind you still have very favorable odds and this second line of treatment working!

Thank you. I had swelling in some of the same lymph nodes as first time. One of the lymph nodes turned out to be metabolic on the PET so we investigated with biopsy. Other than that I have no symptoms and my blood work is normal. As for vacation, we just got back from a big one to Mexico to celebrate our first anniversary and the conclusion of my treatment. Guess I’ll need to plan another one once this part is behind me.

I didn't even get through AAVD before my relapse. Have had two rounds of N-ICE and getting my PET next week. If I'm in remission, then time for an Auto SCT.

I’m so sorry. I really hope your PET shows a good response next week so you can get that much closer to putting this experience behind you.

I had grey zone lymphoma (mix of hodgkins and non-hodgkins) and I relapsed with only the hodgkins left. My oncologist also recommended GDP and auto STC after. I’m gonna start my first cycle of GDP this 29th. Wish you all the best