[emfen1305Participant]

My mum is currently on the RADAR trial and has finished her induction treatment (4 cycles of lenalidomide, dexamethosone, cyclophosphamide and bortezomib) – she has responded to well to the treatment and we were all geared up for her have the SCT at the end of July, she had her Hickman line put in and was due to start her GCSF injections tomorrow but we got a phone call this afternoon to say after an MDT meeting they have decided she is not eligible for an SCT and they are removing her from the trial with no explanation – they have made an appointment for Monday with the consultant but we are both just lost and confused about what happens next as we only know about treatment options with the trial – I assume they will explain on Monday but that feels like a long time away when she has been in tears all afternoon as she feels she has done something wrong which is not the case but don’t really understand what’s happened. Has anyone else experienced this? Part of me is glad she’s not having the SCT as know how difficult it can be but the other part of me worries about the future as SCT was always sold to us as a bit of a golden ticket to a long remission – she’s only 62 and I’m so worried about what this means now.

[rabbitParticipant]

Hi,

I was on chemotherapy similar to your mum’s. I had daratumumab instead of cyclophosphamide.

I have not had an SCT for many reasons. One of those reasons is simply that chemo has improved so much now that there is little to gain further from having an SCT. This is according to my consultant who is an authority on MM. I have also read research papers (my background is in science – but not medicine) which also indicate this.

I went into remission about a year ago, and am taking maintenance chemo.

Please do not worry about your mum not having an SCT. Whilst I obviously have no idea as to the specific reason, your mum may well have extensive remission without it.

Regards
Rabbit

[glencParticipant]

I’m sorry to hear this and hope you get some clear answers about the change of decision. It must be hard waiting. I had a transplant in May and, like your Mum, had 4 months of induction chemo. But it wasn’t part of a trial, it was the DVTD regime so Daratummamab, Velcade (Bortezomib), Thalidomide and Dexamethasone. My consultant is also an authority on MM and a high profile nationally in the field. He still recommends a transplant as the best standard of care in the UK or I wouldn’t have gone through with it. But he did emphasise it is am aggressive treatment that carries risks. In the US, there definitely seems to be a move away from SCTs because of the development of new treatments. Some of those new treatments aren’t yet available here. What I would say is that the SCT was never sold to me as a golden ticket for long remission. My consultant said it was likely to give me a longer, deeper remission than other treatments. But he made it very clear that the myeloma would come back. There are plenty of treatment options out there and new ones being developed every day. I hope you get some answers and that they find a good alternative treatment plan that keeps your mum in remission for a long time. Best wishes to you all.x

[emfen1305Participant]

Thank you both for your responses, quite different but both reassuring that there are other options. They did say she responded very well to the initial treatment but she also suffered with the side effects so doesn’t want to have to do it again. They said induction is quite aggressive so I’m hoping that if she does go onto some sort of maintenance that it will be easier for her. I still haven’t heard back from the team but apparently they did mention yesterday about mum’s emphysema which we weren’t aware she even had – the consultant did say a while ago there were some changes consistent with age and smoking (although she hasn’t smoked for over 20 years now)on the X-rays so I can only assume it’s because of that but he didn’t really seem concerned back then.

Part of me is also sad because we really felt cared for by the trial team, the nurses were so lovely and we really built a great relationship with them which was so reassuring as I live 120 miles away from mum and then she lives a further 50 miles from the hospital and although I do my best to take her every week for treatment there are some weeks she has to get transport so it felt good to know she was going to a lovely team and now I’m uncertain where she will be for treatment. I’m sure we will find out more on Monday, just feels good to share.

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