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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Second transplant or not after complications?

by Niki on Mon Feb 03, 2014 7:09 pm

Hello everybody and good evening.

I had an ASCT [autologous stem cell transplant] some time ago. Prior to the ASCT, I had reached sCR [stringent complete response], but I had MRD [minimal residual disease] of 0.06% . On day +13 of the ASCT I experienced peritonitis and I had a surgery in order to survive. A month after I experienced a lung abscess because of fungal infection and we have dealt with it successfully with antifungals.

Right now, I start to think about the option of doing a second transplant in order to try to achieve a more durable remission or even a molecular remission. After talking with a lot of specialists they say that this should be my personal choice.

Has anybody else experienced all that? Is there the danger of experiencing the same life threatening situations once again?

Best regards,
Niki

Niki

Re: Second transplant or not after complications?

by Gilbert on Tue Feb 04, 2014 12:10 pm

I have completed 2 SCT second transplant was difficult but I made it thru 6 months after last transplant. I got shingles. Horrible stuff.

Do your second SCT it will make you special.

I am 3 years out with PET scan every 6 months to check any activity. So far so good.

Stay strong. You can do it!

Gilbert

Re: Second transplant or not after complications?

by Niki on Tue Feb 04, 2014 2:23 pm

Dear Gil,

Congratulations for the results and thank you for your answer. I want to do it too, but it will be 8 or 9 months after the first ASCT. Because of the complications, i wanted to have more time to recover completely. May i ask you where have you been treated?

They told me that tandem transplants, are normaly done 6 months apart but because i am in complete remission it will not make any difference to do it a little bit later, since are normaly done in order to get you in remission.

Thank you alot Gil
Niki

Niki

Re: Second transplant or not after complications?

by Gilbert on Tue Feb 04, 2014 4:22 pm

My non-secretory multiple myeloma started 1/7/10. 2 weeks radiation lower back 5 months chemo

First SCT 7/10/10, second SCT 12/10/10

Both transplants at Hackensack Medical Center in New Jersey about 40 minutes from my home.

Have no fear it's the best way to go. Give yourself up to the doctors and nurses they will get you
thru it . I'm 64 and feel good.

Keep exercising when you can.

Gilbert

Re: Second transplant or not after complications?

by Kris on Tue Feb 04, 2014 9:14 pm

Hi Niki,

I have had 2 auto transplants about 3 1/2 years apart. I also had a lot of complications with both my transplants. For the second transplant my doctors at Mayo reduced my melphalan dose by 5 percent but I still had bad side effects.

Are you seeing a myeloma specialist? I would get that person's opinion, in addition to a transplant physician's. I would consider the level of success you have had with existing drugs. You may do as well by doing long term maintenance with multiple drugs and you could always do a second transplant later.

My first transplant I had a 3 year CR but did no maintenance. My second transplant was 3 years later and I have already achieved a longer CR due to 2 year maintenance with rev/vel. I think research is starting to favor continuous therapy over multiple transplants. Remember, melphalan is carcinogenic and can cause genetic mutations. Plus, I would assume you would have a similar level of side effects as you did with your first transplant.

Hope this helps. Best wishes to you!!

Kris

Kris

Re: Second transplant or not after complications?

by Niki on Wed Feb 05, 2014 11:57 am

Hello Kris,

Thank you for your response and congratulations for the results. Did you have the full dose of Melphalan?

I am living in Europe, but we travelled with my son to the US in order to get treatment options from specialists. We went to Arkansas at MIRT and in Arizona at Mayo. For the follow ups we have to travel in order to be under some specialists care. Take care

Best regards
Niki

Niki

Re: Second transplant or not after complications?

by Kris on Wed Feb 05, 2014 9:56 pm

Niki,

Sounds like you have received the best opinions possible!!

I had my 2nd transplant at Mayo Arizona. I got full dose melphalan the first time, then the second I only had 95 percent of the dose because of the difficulty I had the first time. That may be an option for you as well, considering you already are in CR with a very low tumor burden.

Best wishes!

Kris

Kris


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