Relapsed DLBCL

[Clementslr]

Hi everyone. I have been well since finishing my treatment for DLBCL in Sept 2016 which was 6 cycles of R chop. Pet/ct scan in November 2016 gave me the all clear. Now after having a lump removed from my shoulder it has shown traces of high grade Lymphoma although it has presented differently from the 1st time around. They are going to give me radiotherapy on my shoulder but if that doesn’t work I may have to go down the stem cell transplantation route. Just wondering if anyone has experienced something similar. Grateful for any advice. I am in the UK.

[heathereevans]

Hello, i had 3 rounds of Rchop in 2015. I was all clear until May of 2018. I have transferred DBCL. I am currently undergoing 3 rounds of RICE. Im on second round this week. It is much worse than Rchop. Infusions are 4 days in a row. And after i am complete 3 we will do a pet to see what cookin. After i finish with rice i will undergo a stem cell transplant. I am positive in the outcome. Only bc there is no other outcome for me. I wish you the best of luck. Thank you!

[gardenFAIRY in reply to heathereevans]

My situation sounds similar to yours. I was treated for DBCL with RCHOP. The cancer came back just under a year later. I had the rice treatment followed by high dose chemo and a stem cell transplant. Just about 2.5 years later the lymphoma returned, but this time it is the Marginal zone type. I had 12 radiation treatments and have a pet scan schedule for next week and then will go from there. During my whole journey I woke up every morning and stated "I'm still alive" I never once thought that I wouldn't make it through this

[Lizard28]

Hi, I know it’s been months since your post, but I just wondered how you got on with your radiotherapy? And if it worked etc. I finished six rounds of chemo in November for marginal zone lymphoma with excellent scans in December. 2 months later at my follow up appointment I have another lump on my neck, same place as before. I’m waiting on an urgent ultrasound and biopsy to be done. Chest X-ray and bloods were done, doctor said she would speak to DMT next day to ask them about my case as it’s unusual for this to happen so soon. I think I am more worried that it’s came back more aggressive this time as it’s a slow growing cancer. Had lump for 1 month now. I coped well with R-CRP but don’t think I’m up to more chemo if its came back. Thought I would at least get a few years, keep willing it to just go away. Hope you are well.

[Clememtslr in reply to Lizard28]

Hello. Well I had 15 sessions of radiotherapy finishing in October. That was ok and they were pleased with everything after that . I am now waiting for another Pet/ CT scan to make sure nothing else has popped up. I am feeling ok at the moment so fingers crossed. Good luck to you .

[Lizard28 in reply to Clememtslr]

Hi, thank you for your reply, I’m pleased the radiotherapy went well. My biopsy is Thursday, then the usual wait. Hope everything goes well for you x

[gardenFAIRY]

I had a stem cell transplant in 2015 to treat Diffuse large B cell lymphoma. The procedure was rough on me and my body, however as of my last scan 10/18, I have no trace of DLBCL. However at that time the pet scan showed "activity" which the biopsy proved to be Marginal Zone Lymphoma. I was treated with Radiation and will have follow up pet scan 2/23/19

[Clememtslr]

Good luck with your scan. Hope all goes well.

[gardenFAIRY]

I was treated in 2016 with a stem cell transplant for DLBCL. In late 2018, I relapsed with marginal zone lymphoma. I was treated in December 2018 with 12 radiation treatments. Post treatment PET confirmed remission

[Clememtslr in reply to gardenFAIRY]

Glad to hear you are now in remission. Good luck