[caroline123Participant]

Hi – hoping for some further information on tandem transplants as this has been mentioned as a possibility for my husband.
He was diagnosed with MM in February 2021 and had a high presence in his bones and 9 compression fractures in his back. He had two operations on his back prior to starting chemo and this helped enormously with his pain and mobility. His paraproteins were just over 40 and he had several multiple pockets of Myeloma and after 6 cycles of VTD they had come down to 5.2. They had jumped up to 10 four weeks later when he had the stem cell harvesting, and three weeks later when he went in for a transplant they had jumped to 17 so the transplant was postponed. A week later he started the first cycle of DTPace and they had jumped to 20. Following the two DTPace treatments they had come down to 4.2 and the light chains were normal and he had the SCT on the 23 February. When he was first diagnosed his bone marrow biopsy showed he was an intermediate risk patient. Just prior to discharge the possibility of a tandem transplant was mentioned but I’m guessing until we get to 100 days or thereabouts and all depending what his bloods are showing at this point Whether this will be recommended. It was a bit unexpected and having googled it and realising they are normally done just 3 months following the initial transplant, we are still trying to process it. We know everyone has blips on their Myeloma journey and we haven’t, as yet, had the opportunity to discuss the pros and cons with our consultant but would love to hear from people who have either had this transplant or have any more information about it. Also, we haven’t met anyone who had to have the DTPace immediately prior to SCT so again would love to hear from you. I’m struggling a bit at the moment trying to be supportive and positive but feeling a bit overwhelmed and frightened by it all. Many thanks. Caroline

[caroline123Participant]

Sorry, just realised I should have posted the above in Treatment – not sure if I can move it?

[kh0305Moderator]

Hi Caroline,
One of the forum volunteers here. I’ve just contacted our moderators to see if it is possible to move the post across to the treatments section. I’ll let you know! I’m sure people will see it here in the meantime though.

I’m so sorry to hear you’re feeling down and worried right now. I can understand that. When my dad was diagnosed it was all so overwhelming and scary and you just don’t know what to expect and then when his treatment stopped working during his first relapse all those feelings resurfaced. I haven’t any experience of DT Pace or the tandem transplant to share with you unfortunately, but I’m sure that if his consultancy team are looking at it then they will be looking at best options for his situation. Hopefully once you have run through the information with them it will help settle some of the worries. In the meantime I always found it helpful to research the treatments as it helped me feel prepared and I’m sure there will be others on here that can offer some direct experience stories to you which will hopefully help. Try to stay as positive as you can, easier said than done I know, and we are all here to support you as much as we can. Keep us updated with how everything’s going x

[courtneymyelomaukModerator]

Hello Caroline123 – unfortunately it’s not possible to change the post to another part of the forum – by all means do copy and paste into the treatments section as you may get a better response there. Sorry about that.
Courtney – Myeloma UK

[caroline123Participant]

Thank you so much for your support. I think the last year has just been so busy with appointments and treatments and in my head I thought that if we could just hang on in there until after the transplant that life might get easier, hopefully a good remission and we could start to pick up our lives again and now I just feel very uncertain about the future and what happens next. We will be meeting our excellent team in April so I’m sure we will have a little more information then – my husband has had wonderful care and we have complete faith in the team looking after him.

[kh0305Moderator]

I totally understand how you feel. It is like you are always just waiting for the next thing and then it will be ok, but then there’s something else and you suddenly feel like you are just spending your whole time waiting. I’m sure the team will be able to get you sorted and give you a bit more direction and hopefully it won’t be too long before some sort of normality will resume. Stay positive and try to focus on the now as much as you can. Thinking of you x

[tony642Moderator]

Hi Caroline 123.

I am also one of the peer forum volunteers. I was diagnosed in May 2019 and have undergone autologous stem cell transplant. The outcome for me is that the cancer has been inactive since then, so it goes to show that teratments can be effective, and even if relapse occurs, then there are other lines of treatment that can be offered.

Because of those treatments, there are many of us living with the diseased leading normal lives. The main thing is to have a positive attitude. There will be times when he doesn`t want to do things, but when he does, go out and enjoy those days.

My wife cared for me when I was released from hospital, and she found it useful to speak with carers of other sufferers as to what was the best way to help me, so maybe that is something you could consider doing? She found it helpful to know that she was not alone and many other had gone through exactly what both of us were going through.

Keep us informed of how he is going on, and let us know if there is any other way in which we can help.

Regards, Tony

[caroline123Participant]

Hi – many thanks for the messages of encouragement and support, I really appreciate it. It’s been a long year and I just hope we are nearly at the point that we can have some more “normal” time. My husband is doing really well 35 days post transplant, he looks a lot better, feels stronger so it’s all very positive. We will be meeting with his team early April so we’ll get the chance to ask a few more questions then. It really does help hearing from other people who have shared their stories so many thanks to you all. Best Wishes Caroline

[kh0305Moderator]

Hi Caroline,
Great to hear your husband is feeling stronger each day. Long may it continue. Hope the consult goes well and you get all the answers you need. Take care x

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