Feeling alone

This topic contains 4 replies, has 5 voices, and was last updated by  tony642 2 weeks, 6 days ago.

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  • #141949

    claro70
    Participant

    Hello – I have used this website a lot for information but feel a bit alone at the minute as a carer. My husband had a stem cell transplant in December 2018, after a diagnosis of multiple myeloma stage 3 in April 2018 but his cancer became active again in summer 2020. He has been part of a clinical trial and was due to have his second stem cell transplant next week – however, the chemo for the trial worked initially but within 3 weeks of finishing it, his levels have gone straight back up. He has now been put on the maintenance drug lsatuximab as the stem cell transplant wouldn’t have worked.

    I was just wondering if anyone else had experienced anything similar – just feel like we are going round in circles – consultants have been brilliant and certainly know they are doing everything they can.

    Thanks people – hope you’re all doing well.

    #141972

    davidainsdale
    Participant

    Hi Claro70

    Sorry to hear that you are facing a few challenges just now.

    We have a myeloma support group here in the North West, and your experience is by no means unique with others in our group being on a similar journey. We have found that carers find just as much value from talking to others in the support group as do the patients, particularly when family members go to the same hospital, have the same consultant etc. This may be something you have already tried, but if not, it’s certainly something I would recommend.

    Hope this helps.

    David

    #142867

    kh0305
    Participant

    Hi Claro70,

    I am one of the new discussion forum volunteers and have just come across your post. I appreciate it was some time ago so I hope that your husband is doing much better now.

    I wanted to share my experience due to some similarities so hopefully help you feel you’re not alone in this. My dad had his first SCT back in 2013 and went into remission until late 2020 when he relapsed. He was put on new treatment which he seemed to respond to initially, and as his first treatments in 2013 had gone so smoothly we didn’t expect it to not work, but then dad started to experience bad side effects about 3 months in, had his regimen tweaked and then it stopped working. He was without any treatment for a short time, which was worrying in itself as we knew while nothing was happening his bloods were going to be going crazy. Dad is now into his second cycle of lsatuximab and we see the consultant week after next so hoping that will have some positive effect and blood results will be improved. The positive is he’s feeling much better on the new combination even with the expected side effects, and has put on some of the weight he lost last year, so that is something!

    Good luck with everything x

    #143152

    myelomaukeventsteam
    Participant

    Hi Claro70,

    Please don’t feel alone! We have a new Friends and Family online Support Group formed by Myeloma UK, and it welcomes family and friends of myeloma patients to meet and discuss the issues facing them as well as offering an opportunity for social connections.

    The first Zoom meeting is on Thursday 5 May, 6pm-7pm.

    I posted into the Carers sub-group of the discussion form, but you can find out more information, and register here:
    https://www.myeloma.org.uk/help-and-support/support-groups/friends-and-family-support-group/

    Any questions, please contact E: supportgroups@myeloma.org.uk / T: 0131 230 0419

    #143189

    tony642
    Participant

    Hi Claro,

    I have only just seen your post. I know a lot might have happened since then, so if you feel that you want to give us an update, then please do so.

    Regards, Tony

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