[jules33Participant]

Hi Emsie, my husband was also diagnosed with MM a year ago at 46. I can totally relate to how you are feeling. He was also stage 3, has poor cytogenetics & had substantial damage to his back on diagnoses. Induction treatment at our local hospital of velcade dexamethasone & cyclophosphamide was ineffective & stopped after 5 cycles. We were given SCT as the next option . However like you I had concerns about an SCT without some form of partial remission ( his PP did not drop below 27). I trawled the Internet specifically myeloma beacon to see what was on offer elsewhere in the world. I read up on immunotherapy treatments & we transferred to a London hospital for a second opinion & I hoped more options.

I am so glad we did my husband is now on a new regime & is responding his pp is nearly in single figures & he is tolerating the treatment far better than the VCD. I just feel that there are options out there & where you live shouldn’t dictate what they may be. Check myeloma beacon, in the States they seem to be tailoring treatments to cytogenetic profiles there are so many new immunotherapy treatments coming through some are on trial here check all the options before going for an SCT. Different Consultants have differing views often based on what is available to them. I would recommend looking at the trials list on this website & possibly trying to get a 2nd opinion on what next step could be at a hospital involved in trials they maybe  able to offer an option unavailable elsewhere that may give a deeper remission before embarking on an SCT.

Rebecca is right re a positive mindset & she is amazing. However I like you am a bit of a control freak, who is struggling to cope with the changes to our lives & the uncertainty that a myeloma diagnoses brings. Happy to talk anytime just message me. Best of luck, Jules

[jules33Participant]

Hi, Rebecca, Mojo & Annalyn

thank you for taking the time to share your experiences it’s really useful to have your honest opinions & personal experiences. The info in the fact sheets doesn’t really cover the carer at all & yet there is an expectation that you will be there to do it :- my real concerns as to what if you can’t not won’t but can’t  have been allayed by our conversation .

Mojo, Unfortunately my Employer has capped sick pay at 60 days in a rolling 12 month period before they remove elements of my pay . I know this as due to Marks condition on diagnoses & the effect this had on us all I was off for 2 months or 61 days my pay packet this month reflected that ! We will see what the Consultant has to say in November at the end of the 6th cycle.

Mojo, please keep us posted as to how it all goes for David I wish you the very best for a good SCT.  Abseil amazing puts my bake sale to shame. Well done you.

Thank you all again , Jules

[jules33Participant]

Tony,

thank you for the pointers unfortunately we do not yet qualify for help (Marks pay has to drop). In our area we have a Force centre with a CAB adviser in situ 2 days a week who has been a great help & has looked at the small print as they say. We have used savings to purchase a wheel chair, an adjustable bed & create level access to our home. But I check the post in hope everyday !!!

Sadly because I work more than 20 hours a week I cannot be designated as a carer so suspect we won’t qualify again.

I will add Macmillan to my list.

thank you again, Jules

[jules33Participant]

Mojo,

i have a similar conundrum with 3 children to add into the mix. My husband Mark diagnoses came after 3 months of debilitating back pain . It took a further 6 weeks post diagnoses to get the pain under control. We are rapidly approaching the end of induction chemo and the Dr is suggesting SCT despite poor cytogenetic results. Our problem is financial as well I can not take any more leave ( without a pay cut) & Mark is about to go onto half pay. As a young family with 16 years left on our mortgage this is a huge worry. I fear Mark will have to stay in hospital or respite until he can fend for himself post SCT as I can see no other way to give him the care he will need. Not to mention the infection risk that school children bring. We have yet to access any carer support 3.5 months down the line maybe there is some in the pipeline. We don’t have a great relationship with our Specialist nurses since we left a support group meeting early ( we were honest said work/ school runs meant i couldn’t come in future & not Marks thing). No one to really ask these questions to .

Thank you for raising the question I hope everything goes well for your husbands SCT & that your solution works out.

Jules

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