[znabParticipant]

Hi, I hope that everyone is well.
Did anyone here complete their initial induction and do so well that you’re in or very close to remission? Did you still go ahead with SCT? Does standard risk/high risk make a difference?
TIA

[mulberryParticipant]

With the latest myeloma drugs available to patients in the USA, some specialists there are advising certain myeloma patients not to have SCT, or certainly not to immediately if they have had Complete Responses to induction therapy. I believe that High Risk patients are usually advised to have SCT or tandem transplants (a second 3 months later). Not all the latest Myeloma drugs are available (yet) in the UK and the NICE guidance is to follow induction therapy with SCT if patients do not have other conditions which would make it too risky.
It does feel counter intuitive to have a SCT if you have had a Complete Response to induction, but currently we have no way of knowing HOW deep the complete response is, and SCT is likely to produce a longer period of inactive disease. Although we have to be told all the things that can possibly go wrong with SCT, and few people have NO side effects, most people tolerate it without major complications, and many go on to have second transplants later.

[znabParticipant]

Thank you mulberry, you are a great source of help and knowledge – thanks 🙂

[richfsModerator]

Hi TIA,

I’m in a different situation in that I am half way through the 2nd line DVd treatment, which will be followed by monthly Daratumumab maintenance.

I had DVT followed by a SCT back in 2019 when I was first diagnosed with myeloma, and was told by the transplant team that “Not having the SCT would be like burning bridges” as it’s the best option available, and if you don’t have it when it’s offered, you can’t have it in the future.

As Mulberry says, things are changing – in the US at least – and I’m sure that in the future the SCT won’t be offered in all situations.

After the myeloma relapsed this year, for my second line treatment I was given the option of an induction chemotherapy followed by SCT and then no maintenance, or DVd followed by Dara maintenance. Since Dara is only available on the NHS as a second line combination treatment, or as a single 4th-line treatment, I choose to go with that, also as it offers Dara maintenance. I therefore have a SCT up my sleeve for a future 3rd line treatment.

As I say, this differs from your situation, but shows that in the UK as well, treatments without the SCT are being offered. I’d talk to your team in great depth about it, and consider if other treatments would still be available to you in the future.

Best wishes in your treatment,
Rich 👍

• This reply was modified 1 year, 5 months ago by  richfs.

[znabParticipant]

Thanks Rich… I’ve decided to do the SCT… I’m high risk and after a great response the numbers are already going in the wrong direction 🙁

[richfsModerator]

Hi Znab,

I think that’s the best decision. Since you responded well to the induction chemotherapy, I expect that you’ll have a good response to the SCT, it should deepen and lengthen the period of remission that will follow.

The SCT process itself isn’t much fun, but certainly was far more manageable than I had feared. It totally saps your energy, and your gut will likely have a few days of behaving badly, but other than that it’s not too bad for most people. I felt that my team had filled me with fear about it, but actually it was OK and I certainly would have another SCT if and when the need arises.

Best wishes, and do reach out to us on the forum as you continue with your treatment. Remember to look to the better times when you’re in remission and live each day to the full.

Rich 👍

[znabParticipant]

Thanks again Rich… my SCT has been postponed, need some more chemo as the myeloma is present in my bones! It’s all too much BUT being part of this forum and knowing of peoples experiences lets me know that it will get better.

[richfsModerator]

Hi Znab,

I’m really sorry to hear that the SCT has been delayed. You’re certainly not the only person to experience this, but it’s frustrating after the induction chemotherapy has seemingly worked well.

Are they giving you more cycles of the same treatment, or changing the mix of drugs?

Myeloma, sadly, is a very individual disease which can make it difficult to diagnose and to treat. However, there are lots of different treatments available, some treatments work better for some people than for others, and more being developed and tested all the time.

Do stay positive and let us know how you get on.

Sending you best wishes,
Rich 👍

[znabParticipant]

Thanks Rich,
It was hard to accept but now realise that a lot of people would go through this. There’s lots of treatment and research available/being done so there is so much hope 🙂
It will be the same induction meds plus PACE – it’s intense and over 5 days so will be different to induction.
Will let you know how it goes,
🙂

[tony642Moderator]

Hi Znab, sorry to hear your SCT has been delayed, I can only tell you of my experience. I had a SCT in January 2020, so almost 3 years ago. Since then I have been having blood tests every 3 months and there has been no signs of any active cancer, so classed as being in remission. Also since then, I have not been on any form of maintenance treatment.

For me, it was the right decision to make to have the SCT, and if I was told I needed another, I would go for it. As Richard says, it is not pleasant, but the effects only last a few weeks, and if it extends your life expectancy, then for me it is worth it.

Let us know how you get on.

Regards, Tony

[richfsModerator]

Hi Znab,

Ah, DT-PACE, yes that does sound rather more intense than the induction treatment that you’ve been on, I don’t have any personal experience of it, but with the extra mix of drugs it’s a strong option to really knock the myeloma on the head.

I guess you’ll have to stay in hospital for the treatment and then a few weeks recovery whilst your immune system gets back on track? This is similar to the SCT process, I was in for around 20 days and can certainly give you some helpful advice when the time comes on good ways of coping in the isolation room for so long. It’s certainly not a holiday, but at least you won’t have to make tea or do any washing up! And now, “post-Covid”, you’ll presumably be allowed a small number of visitors to keep you sane.

I know of myeloma patients who try different treatments, some don’t work as well as hoped, then others work better than expected, it’s a case of your team finding what works for you.

Keep strong, and let us know when you’re starting with DT-PACE and how it goes.
Rich 👍

[znabParticipant]

Hi Rich,
I’m on day 9 of recovery and getting stronger everyday. My blood counts are super low at the moment, I was tested on Friday (the drop from Weds to Fri, the days I had my bloods, was shocking but expected and I’m feeling strong so it’s okay).
The treatment was VRD-PACE, so velcade and revlamid instead of thalidamide. My lump has gone so it’s done its job I hope! I get 21 days rest and then do another cycle. This should hopefully get me ready for the SCT.
I am very lucky to be treated at a hospital that puts patients up in its charity run hotel. It was just around the corner and I had someone stay with me too. It was much more comfortable than being in hospital for 5 day full days!
Regards,
Zainab

[richfsModerator]

Hi Zainab,

Thanks for the update, you sound very positive which is great! The hospital-hotel arrangement sounds so much better than being on a noisy ward. Now you’ve have one cycle of VRD-PACE and have seen that it’s been effective, you’ll be able to face the other one with more confidence.

I guess it’ll be a couple of months before they book you in for the SCT, do let us know how you get on and if you have any other questions. The SCT process generally itself isn’t as bad as your team will make out.

Best wishes for what must seem like an uncertain 2023, but hopefully one which sees you return to good health and get your life back,
Rich 👍

[bernardParticipant]

I personally opted for my second sct after saying I would never have it again. I do believe it increased my remission periods. The first remission was 5 years and the second 2.5 years. Kind of eha5 was expected. On 3rd line treatment since June 2020 so hope to stain remission to about December this year or a bit longer. The annoying this is that this is now continuous chemo which I hadn’t appreciated, so I get the side effects which do seem to worsen over time, such as lack of sleep. I’ve been awake all night and due to get up in 90 minutes time. Plus moodyness and over eating, which I blame on the steroids. This week he cut them from 40mg to 20mg so let’s see if that works. Good luck to you all!

[garhow55Participant]

I notice that there is a great use of abbreviations like VRD-PACE etc. It would be very helpful to be able to identify what the abbreviations stand for.

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