Hodgkin’s Lymphoma in remission. Should I have stem cell

Hi Lisa,

A hard decision.....this is a decision that ultimately should be yours and yours alone, when you weigh up all the pros and cons and go with your deep gut feeling.

a remission hard-won does need a careful thought as to what will keep it there. Yes, a SCT is tough but can be curative. I think you need to have a careful talk with your team to help you make up your mind, and maybe get a second opinion to help too, your team should help advise you as to who should be the best consultant to ask. 

hugs xxx

Hi Lisa lolaruby and welcome to the Community.

Good to see moomy put up the first reply (I had been holding back) as I had NHL and a different dilemma.

I basically had no option but to go for an Allo (donour) SCT as my condition had become very aggressive and as hard as thy could have tried I could not be put in the position for cell harvest and even after all the chemo/treatment I had I still had my 2 Allo SCT with active cancer cells in my body..... but the last Allo was just over 5 years back and been in remission for 4 years, the first time in over 17 years.

I was 58 and close to 60 when I went through my two SCTs so it did hit me hard but I will never regret the decision.

As moomy has suggested, gather all the evidence, find a second opinion if you can then weigh up the risk against result and make your decision based on this.

We are always around to help if we can and also the folks in the Stem cell transplant Group I see you have joined.

Understanding Stem Cell Transplants using your own cells (autologous) - PDF here.

Hi Moony,

Thankyou for that advice. I am having another meeting with the Stem Cell Team to discuss it more in detail but one Doctor has already said don’t have it as my kidney fu cation was comprised after EShap treatment and they are worried this may happen again .. They want me to have it at our main Hospital as they have kidney specialist there .. so that doesn’t fill me with much confidence!!!

My gut feeling ( especially with Covid ) is to not have it and hope and pray it doesn’t come back , and if it does , there are still plenty of treatment to try .. however ..don’t want to be too close minded and I will listen  to their advise first .

feel great too .. so that also makes the decision a lot tougher !!

take care and stay safe..

lisa x

Hi ,

Thankyou for that advise . I have replied back to Moony and will listen to the Stem Cell Team too before a decision is made .

Glad you are well and your decision to have stem cell was the right one . I suppose I’m finding it difficult as my HL has gone , thus is a “ belt and braces” treatment not to get me into remission.. they say although they can’t see any cancer cells on the scan .. it could still be there .. but it also may not !! So even the specialists can’t say for definite..pity we don’t have a glass ball !!

well , will see what happens next .. Thankyou for replying back .

Take care and stay safe !!

Lisa x

Hi Lisa.

 I apologize for the late reply. I went through the same decision last year. I had had ABVD, BEACOPP, BvB, reached remission, couldn’t collect stem cells for an auto sct because my bone marrow had been through too much and wasn’t making stem cells, had two cycles of just BV, and then radiation. By the time that I finished the radiation (3 weeks) I had been in remission for 3 months. We waited another three months and did a pet scan which was negative.

At that time I had to make the decision whether to continue treatment (BV), try for another auto sct, or stop treatment. I had been in remission at the time for 6 months and had not had any treatments for the last 3 months. In comparison, my cancer had grown and formed new nodes while I was on BEACOPP. I took this as a sign that this was a pretty solid remission since I had gone from growth with strong treatment to no growth with no treatment.

 I had several appointments with my team and ultimately made the decision to stop treatment and just monitor it. Another factor that went into the decision was that they are making great strides in new treatments and that there will be better options down the road if I relapse. It has now been 1.5 years since my last treatment and next month will mark two years of  remission.

 I fully agree with you about the extra dangers of getting an sct during a pandemic. I can’t promise that you will have the same results, or that my HL won’t relapse, but I have been glad so far that I made this decision. I do urge you to ask your team about radiation therapy as well as other treatments that are not as damaging as an sct and see if they feel that you need immediate treatment or a short wait and a pet scan would be beneficial to see where you stand. 

Wishing you the best. Take care. 

Jason

Hi Jason ,

thankyou so much for replying with this information. Sounds like we have both gone through very similar journeys .

I have just had another Pet scan and am still in remission so brilliant. The consultant has now sugggested I carry on with BV ( as I’m funded for them ) for another 8 treatments then probably stop treatment so long as I’m still doing ok .

They seem to think shelving the stem cell is a better plan so I’m happy with that .

feel great and pleased with this plan. I feel confident this is the right decision for me as it has been for you !

Take care and thanks again .

lisa :)