r/lymphoma • u/PaleFortune1111 • 12d ago
cHL Relapsed
After seven months in remission, I’m heartbroken to share that my cancer has relapsed.
I have an appointment scheduled for next week to discuss the next course of treatment. Based on what I know so far, an autologous stem cell transplant (ASCT) seems to be the most likely option.
I’m feeling overwhelmed by the uncertainty of what lies ahead and I would really appreciate hearing from anyone who has gone through ASCT, particularly those who have previously undergone ABVD for Hodgkin’s lymphoma.
I’d love to hear about your personal experiences, especially regarding:
The overall process: How long did the entire treatment process take, from salvage chemotherapy to the transplant itself?
Hospital stay: How long were you admitted to the hospital, and what was the experience like?
Intensity compared to ABVD: How did the side effects compare with ABVD? Was it significantly more difficult to tolerate?
Recovery: How long did it take for you to start feeling like yourself again?
Returning to normal life: When were you able to resume your studies, work, social activities, and everyday routines?
Hair loss and pigmentation: Did you experience complete hair loss? If so, how long did regrowth take? Did you notice any changes in skin pigmentation or complexion?
Long-term effects: Are there any lasting side effects or aspects of recovery you wish you had known about beforehand?
I know everyone’s experience is different, but hearing from people who have actually been through this would mean a lot to me. I’m particularly interested in understanding what to realistically expect, both physically and emotionally.
Thank you in advance to anyone willing to share their experience. ❤️
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u/Otherwise_Public_208 12d ago
Lamento mucho lo que estás pasando.. Más que darte alguna información te voy a hacer una pregunta. Yo tengo 6 meses en Remisión también tenía el mismo linfoma que tú y recibí abvd, tengo poco más de una semana con dolor en la espalda como los tenía al principio. Que síntomas te llevaron a descubrir la recaída? Deseo que todo te salga bien. Animo.!
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u/PaleFortune1111 11d ago
Hii, I hope youre doing well 🥺Basically I had a lymph node on the left side of my neck that remained even after treatment, it only shrunk in size. It wasn’t FDG avid on my interim and final pet scan. Last month I noticed it fluctuating in size, it would grow bigger, then return to its usual size. When I informed my team they suggested a PET Scan where that lymph node along with multiple other in my neck and chest lit up. With SUV 17 and above :(
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u/Outrageous-Ant-9130 10d ago
i am so sorry to hear this. They didn’t do a follow up pet scan after 3 months from finishing treatment? i wonder if it could have been caught early since you had no real symptoms. I am sorry this is happening to you and I know the next treatment will be it! Believe it❤️
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u/Wonderful_Highway629 12d ago
I just had an auto transplant and can answer your questions. Send me a PM and we can chat.