Auto Stem Cell transplant?

[skinkade]

Hi,

Curious to know if anyone out there has had R-chop, then relapsed and the next line of treatment recommended was SCT? I've been battling Marginal Zone lymphoma (2016), transformed to DLBCL (2018) and now it's back again. The auto process sounds very scary (dangerous), and with a 30-50% success rate it's a tough call. But obviously if it's my best chance of survival I'll likely give it a try. I'll be asking the doc (getting a second opinion tomorrow), if Car-t is a better option as well. If anyone has similar experiences please share, I truly appreciate you fellow warriors!

[Clementslr]

I have DLBCL. Had 6 cycles of R Chop in 2016. Relapsed 2018 with lump in shoulder which was removed and I had radiotherapy.All good until last May when I had another lump in my thigh.

Advised to have autologous stem cell transplant which I had in September 2020 after high dose chemotherapy.

Tough treatment but it’s doable and you will have all the tests beforehand to make sure you are up to it.

I am 61 and now 7 months post transplant am doing ok. Feeling good. Still get a bit tired but am hopeful that it is now gone for good.

Happy to answer any questions you have.

Regards

Lynette

[skinkade in reply to Clementslr]

Thanks Lynette, appreciate your feedback. I know it sounds really tough getting through it but if it's the best option I think I'll go for it. I want to be around a bit longer, maybe see grandchildren some day. I'm 7 years older than you but in pretty good shape so hopefully I can handle it. I have no lumps or bumps, but have all the B symptoms and feel pretty lousy right now.Thank You!!

😁

[skinkade in reply to Clementslr]

Sorry forgot to ask where you were treated and were you in the hospital the entire time?

[Clementslr in reply to skinkade]

I am in the UK and was treated at the RUH in Bath. I was in hospital for almost 5 weeks. I could have been out in 3 but got an infection in my picc line so had to stay in on antibiotics

[McFifi88]

Hi,

So sorry to read about your relapse.

My partner was diagnosed with PMBCL in 2018. Looked like R-Chop was going great after the last scan he had during treatment. So we were pretty stunned that 10 weeks later it hadn’t in fact worked. They say you should stay away from the internet but of course we don’t. I honestly feared the worst.

He had his STC end of January 2019. He was 31 at the time and yes it was very tough going despite him being relatively young. Just getting up and going for a shower seemed like the hardest thing in the world. Exercise was important. As soon as he was able we started with very short walks, gradually extending them as he felt more capable. Now we do a Joe Wicks workout most days or a fast walk to the park. I think he now feels fitter than he did before. It’s now more than 2 years and he is doing really well. He would have been back at work last year if it hadn’t been for COVID.

I hope this helps and wish you all the best for your treatment.

Fiona

[oncloudnine in reply to McFifi88]

I was diagnosed with PMBCL in 01/2016. I had 6 rounds of R-Chop chemo and 20 sessions of radiation treatments, I am thankfully still in remission but always fear a relapse. I am now 69 years old, so at this age, I don't know if I would accept chemo or radiation again. I was left with horrible neuropathy in both feet from the chemo, and heart damage from the radiation, and the lymphoma invaded the phrenic nerve to my right diaphragm, and it is paralyzed half way up the right lung which affects the air capacity in that lung. So God willing I will have no relapse because next time I will probably just let nature take it's course. I will pray for your partner that his cancer never returns, and that you both live long and prosper.

[McFifi88 in reply to oncloudnine]

Thanks for your good wishes. I pray that you also enjoy the best health that you can and remain on cloud nine for many, many years to come .

[skinkade in reply to McFifi88]

Thank you Fiona, that's very encouraging that he is able to do workouts again. Even though I'm more than twice his age I'm still pretty active and hopefully after undergoing this treatment I'll be able to continue. Was he in hospital for the entire treatment, or outpatient?

[McFifi88 in reply to skinkade]

If I remember correctly, he went in to hospital a few days before the transplant then remained in hospital for 2 weeks afterwards. Everyone is different and I think some people have to stay a little longer depending on how they recover.

[ahavatee]

I was diagnosed with NHL b cell follicular in 2002.....following an unsuccessful vaccine trial & Rituxin & rounds of CVP chemo I went through a stem cell collection prior to a possible autologous stem cell transplant....unfortunately after many long days of collection my body did not produce any where near enough stem cells to make a transplant possible. I believe the minimum # necessary is millions....all my procedures were through Northwestern university hospital in Chicago....I've been in and out of numerous treatments over the past many years & am happy to answer any further questions.....best wishes 😊

[skinkade in reply to ahavatee]

Thanks for the info, I'm curious what treatment was successful for you?

[ahavatee]

I had Zevalin in 2008, a powerful radioimmunitherapy treatment , gave me about 6 tumor free years, next we tried rituxin alone for a year or so, when that didn't halt the growth we added Revlimid, an oral chemo, for almost 2 yrs....now its been a year or so without any apparent growth, I do have monthly IVIG (gamma globulin) to boost my immune system & protect against viral infection....been doing that for many years.

[avegan2]

I am 5 months post auto stem cell transplant and I am doing great. I am back to running, swimming, weight training, and taking care of a big house and gardens. I eat a nutrient dense diet and with prayer and meditation I feel so fortunate to be alive and well. I was in the hospital In Salt Lake City,UT for 20 days. My doctors think this is a cure but if the cancer comes back Cart4 is the back up plan.

[Clementslr in reply to avegan2]

So good to hear. I am 8 months post transplant and also doing well. Almost back to normal. Still a bit tired by the end of the day but fingers crossed it is now gone for good. Best wishes

[avegan2 in reply to Clementslr]

I am so happy to hear you are doing so well. I also get very tired by the end of the day but I have always gone to sleep early and wake up super early. Stay well.