r/Lymphoma_MD_Answers

Hi everyone,

I’m a 27M looking for some advice and to hear from anyone who’s been through something similar.

I was diagnosed with Classic Hodgkin lymphoma (CHL) in June last year with a 14 cm bulky mediastinal mass. I completed 6 cycles of ABVD. My interim PET scan showed a Deauville score of 3, so things initially looked promising. Unfortunately, my end-of-treatment PET scan showed a Deauville score of 5, with two metabolically active spots remaining in the mediastinal mass.

I then started salvage treatment with brentuximab vedotin + Bendamustin. After 4 cycles, I had another PET scan yesterday.

The good news is that one of the two active spots has completely resolved (Deauville 1). However, the other spot is still present with a Deauville score of 4. So while there has been a partial response, it seems the disease has not been completely eradicated.

I live in a country where treatment options are limited. After a brief discussion, one of my doctors suggested either:

* Two more cycles of a more intensive regimen such as ESHAP combined with brentuximab, or
* Two more cycles of brentuximab + Bendamustin

And then Radiotherapy to mediastinum mass followed by an Autologous stem cell transplant if Im eligible

I’m devastated. I never imagined I could be refractory to both first-line and salvage treatment, and I’m struggling to process everything.

Has anyone else had persistent PET-positive disease after salvage therapy and still gone on to achieve remission? If so, what treatment ultimately worked for you?

I’m also scared that I’m running out of options. Is it too early to be thinking about palliative care, or are there still realistic curative approaches in situations like this?

I’d really appreciate hearing from anyone who has been through something similar. Thank you for taking the time to read this.

Hi everyone! I’m really worried about my port and I guess I want to rant or ask for reassurance/advice? I’m not really sure. I got my port inserted 4 days ago and I’ve been feeling off since then. I had heart palpitations since then so went to the ER 2 days ago. They checked everything with a chest and abdomen X-ray, blood tests, blood gases test, and a EKG. It showed that it was all okay but I still have the palpitations, alongside some tingling across various parts of my body, pain in my back on the side of the port, and occasionally pain in the arm and chest on the port side. I’m trying to keep calm as the ER said it was okay and to keep an eye on bleeding or signs of infection which I don’t have. It’s difficult tho, I’m not sure how to cope and I’m still learning to listen to these new sensations. Idk if I’m just hyper aware/anxious since the diagnosis or if I should be worried. Has anyone had similar experiences

Hi,

My mom has DLBCL and we completed 6 cycles of Chemo only last month. For past 1 week she has been having severe back pain and the MRI scan shows large deposits in L3 and L4. After seeing this, my treating hospital doctor suggests we don't intervene as the Rchop did not respond well so there is no hope for any further treatment. I feel like my entire world has shattered in front of me.

My mom is 71 and was responding well during the Chemo cycles and her Pet scan after 5th Cycle showed very good response but all within a month this happened.

Is there any hope for my mom? I live in India, Chennai for reference. I have gone through some of the posts similar to my mom's case but I'm not able to processs any of the information in my current state so I am really in need of any help or some positive thoughts. Thanks a lot in advance.