[myeloma2016Participant]

Hello everybody
I was diagnosed with multiple myeloma in 2016. I had my first ASCT on 28 August 2020.I would like to know myeloma patients’ experiences of remission duration. How many years you were in remission before the second ASCT?

[mulberryParticipant]

I hope that you recover quickly from your SCT. Statistically average remission times are 30 months for standard risk patients, 60 months if you can get access to lenalidomide maintenance. This is currently being considered by NICE and although they agree on the medical evidence, for financial reasons they have issued a draft “no”. Myeloma UK are working hard to change their mind before the final appraisal later this month. Trying lenalidomide maintenance would definitely help you at this point.
Some people have very long remissions with or without maintenance, but of course some have much shorter times. I know that people have posted of 8 year remissions without maintenance, but that is statistically unlikely, as is a very short one of just a few months.
It is a good sign if you go into full remission, which usually takes up to 100 days but can happen within the first year. As with all things myeloma there are patients who have never gone into remission but have long periods of stable disease after SCT lasting years. It all means it’s difficult to extrapolate useful predictions from other people’s experience, but it’s also important never to give up hope.

[myeloma2016Participant]

Thank you very much for the explanation

[Anonymous]

Hello Myeloma2016,

I had my first SCT in January 2013 and went into Complete Remission before the end of the first year and had my second SCT recently in July 2020. My first relapse started in April 2018 but the paraproteins increased very slowly so I didn’t have any further treatment until DVD in January 2020. I did not have any maintenance treatment but I did have Zoledronic infusions every month until they were paused during the first wave of the pandemic. It’s so incredibly different from person to person but I always found it helpful to search out the encouraging stories on this Forum and hold onto those.
All the best for your recovery,
Rachel

[myeloma2016Participant]

Thank you very much Rachel for sharing your experience with me. Is the second SCT was different with the first one for you or experienced the same?

stay safe

[Anonymous]

Hi Myeloma20,

I would say that my second transplant was easier than my first one and I have recovered more quickly. Although the procedure itself is much the same, little things have changed for the better over the eight years e.g.:
* they now collect and freeze the stem cells in smaller bags so that fewer cells are killed during the defrosting process
* the anti-sickness medication has improved, I think, as I was offered injections as well as pills such as Domperidone. As a result, I was able to eat a lot more food and didn’t get so weak
* in between meals, the nurses kept bringing me ‘Fortisips’ or ‘Scandishakes’ to drink, as apparently you need double the usual amount of protein while the bone marrow is rebuilding
* this time round I took advice from others on this Forum and sucked ice-pops throughout the Melphalan infusion to try and prevent Mucositis. It definitely helped because this time I had very mild Mucositis that was only a little bit sore for a couple of days whereas the first time round it was terrible and made eating and drinking so very difficult for a long time. This is definitely a strategy I would recommend trying
* it may have helped that this time I had been shielding for five months before the transplant and also that no visitors were allowed. This was a bit lonely but I didn’t catch any infections this time.Thanks to the kindness of the nursing staff and many ‘Zoom’ calls home, it was definitely bearable.

I’ve just realised I’m not sure if that is what you were asking?

This week I am due to have a bone marrow biopsy that has been a bit delayed due to the Covid situation. My consultant explained that this will show whether I am in Complete Remission or Stringent Complete Remission. The consultant told me that the second one is likely to result in a longer drug-free period of remission. Last time I was in Near-Complete Remission at Day 100 and then some time later the paraproteins became undetectable which was a very nice surprise! The only thing is that remission times after a second transplant are said to be on average half the length of time of the first one but I’m just going to enjoy each day as it comes.

Rachel

[myeloma2016Participant]

Thank you Rachel for sharing your experience with me. These information are excatly what i wanted to know.

Saty safe
Ned

[Author]

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