[caroline123Participant]

Hi – would really welcome some positive responses. My husband was diagnosed with MM in February 2021, had 2 operations on his back, 24 sessions of VTD, 2 cycles of DT Pace and a stem cell transplant in February 2022. Everything appeared to be going well in May 2022, very low paraproteins, normal light chains but by July the lambda light chains had started to jump up. My husband was at high risk of relapsing but it has come as a huge blow after he appeared to be doing so well. We are now looking at a trial aimed at high risk patients who respond well to treatment but relapse quickly. We have a fantastic team looking after him but it would be really reassuring to hear from other people who have been in a similar position but gone on to find a treatment which puts them in a holding position and giving them extra years. He’s looking and feeling great which is fabulous. We are both very positive and would love to hear from you. Best wishes. Caroline

[tomParticipant]

Hi Caroline
Sorry can’t help just wanted to wish yous both well, fingers crossed something pops up soon…..onwards and upwards…xx

[kh0305Moderator]

Hi Caroline,
I’m afraid, like Tom, I haven’t any direct experience of this situation, but I have read in the past posts from others in similar situations on here, so hopefully you will get some feedback from those that have been through similar scenario soon. There issue much research and treatments move so quickly in the world of MM I am very happy to hear there’s a potential trial your husband can participate in and that he is feeling much better in himself. We are hopeful that dad will get on a trial soon, albeit different from yours, as I am very positive about what they are doing with treatments and its lovely to read that you are both remaining very positive too. Good luck with the trial and I hope that you get some more positive news regarding light chains soon! xx

[caroline123Participant]

Hi – thank you both for your good wishes and support. We are going down to London this week to meet the team running the trial so hopefully will know more after our meeting. My husband continues to look and feel really well so fingers crossed. I’ll keep you updated. Best Wishes. Caroline

[tomParticipant]

Hi Caroline
It’s no problem, and good luck on the Trip to London is it far from you the trip ?
Onwards and upwards xx

[caroline123Participant]

Thanks Tom – it’s only an hour and a half on the train so no problem. As we have been living very quietly for so long it’s almost like a day out – just need to stay safe whilst travelling, have invested in some FFP3 masks, (we normally just use FFP2). X

[terrysParticipant]

Hi Caroline,
I was diagnosed in November 2018. I had my SCT a year later. Despite a good response I relapsed a year later. Obviously I was extremely disappointed. My next line of treatment was Daratumumab. Unfortunately I relapsed within 6 months. My current treatment is Lenalidomide. I have completed 17 cycles and have felt very well. However, following a recent blood test, the paraproteins are increasing very slowly. Consequently my Consultant and I have been discussing next steps, including accessing a trial.
I’m very interested in hearing how your husband gets on this week at the meeting in London. I do hope all goes well for him and he gets some positive news. Good luck !
Best wishes,
Terry

[caroline123Participant]

Hi Terry, I’m so sorry your treatment hasn’t held you in a better position, it would be lovely for you to have a good long stable period. It’s only an initial meeting on Thursday, then there will be a screening process which will, hopefully, lead to him being offered a place on the trial. Fingers crossed. I’ll keep you updated. Take care. Caroline

[mulberryParticipant]

Hi Caroline
I have two friends whose myeloma does not respond to treatments for long. One was diagnosed about 7 years ago now, but has only had about 6 months between treatments. He has taken part in a number of trials which he accredits with his survival. He is hoping to have CAR-T cell treatment, which is now approved for myeloma in UK, once the admin issues have been cleared which is expected to be early next year. Although CAR-T cell treatment has not worked for everyone, there are patients whose treatment profile was similar to his, who after a single CAR-T cell treatment have been clear of myeloma for several years (&continuing) without any ongoing drug treatment. Miraculous.
The other friend, who needed several lines of treatment to get to SCT, has been told by his doctor that CAR-T cell treatment holds the best long term hope for him, and his hospital are envisaging him being one of their first patients to receive it.
It may be worth your husband talking to his haematologist about CAR-T, which will only be done at the bigger, regional hospitals, as SCTs.

[caroline123Participant]

Hi – many thanks for contacting me. Yes, it’s fantastic that there are new treatments coming along and having such great results giving us all much hope for the future. When my husband had his SCT in February, it was mentioned at the time, as he was at higher risk of relapsing, that they may put him forward for a tandem transplant,(which is normally given, I understand, about three months after the first transplant?), however, as my husband had responded so well and his bloods were all within normal range it was decided to put him on to Lenalidomide at 100 days post transplant. When he started to show signs of relapsing in July we asked about the tandem transplant and CarT cell treatment but neither of these options are suitable for my him,(possibly relating to his DNA, he has a rogue gene and is an Alpha-1 antitrypsin carrier?) and our fantastic consultant at the QE in Birmingham contacted Kings College in London who are considering him for a trial which I think works on T cells so similar to the CarT cell treatment. My husband is feeling and looking really good and we are very hopeful. We’ll keep you updated. Best wishes Caroline

[kh0305Moderator]

Hi Caroline
Hope the trip tomorrow goes well and you have some positive news.
Keeping everything crossed for you both.
Let us know how you get on xx

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