[sunflowersParticipant]

Hi All,

Its been a few months since my diagnosis in August 2022. My Myeloma was identified after I was rushed to hospital with a stroke in July this year at age 50.

Ive been having VCD chemo since August the 11th, ive just completed my 4th cycle, all seems to be going well, other than extensive leg swelling in my right leg, which coincides with the side of my stroke, and ive only seen limb swelling discussed on this forum with blood clots having been an issue.

Light chains have dropped from 17K down to 250, and have plateaued at this point.
Paraproteins (which I note people discuss with kidney and bone issues as being much higher) mine were only 4 and dropped to 0 after my 1st chemo

So everything seems to be assessed on my light protein and kidney function as a monitor by my consultant, my thoughts were that I had responded very well to chemo based on the results.

I was lined up for SCT by my consultant, and she took chemo off the table on Monday, and transferred me to City hospital in Nottingham for a consultation on SCT…within less than 5 mins of entering the room, I was advised by the Nottingham consultant that I was not a viable candidate for SCT, it would be too high risk for me due to my stroke/blood clots….it really took the wind out of my sails. I was told to go back to my consultant to discuss Management therapy as that was my option.

Chemo has been put straight back on the table yesterday by my own specialist…and I am now scheduled for chemo session 5 & 6.

question 1: Has anyone who has blood issues (clots) ever had SCT? if so, what has been your experience?
question 2: Has anyone any experience of Management therapy WITHOUT SCT first? what does this look like? how often and how long have you been having this?

Im keen to know my options and the experience of others so I can have deeper discussions with my consultant so I can be better informed to discuss with my consultant to know which pathways are viable options.

As always, Thank-you :)))

[mulberryParticipant]

Hi Sunflowers
In UK SCT is seen as standard treatment for ‘younger’ patients, but that isn’t the case now in USA. There many myeloma experts believe with all the drugs available now to treat myeloma that SCT is unnecessary. SCT has worked for many patients for many years, prior to any of the other treatments, but it isn’t without drawbacks, such as damaging the bone marrow, which also have long term consequences.
The risk/reward balance is changing, certainly in USA, and in UK NICE & the NHS havenot been slow in approving these same drugs in recent years.
The consultant in Nottingham will have been an expert in SCT specifically. He or she will have been looking at your best interests when saying that SCT is too risky for you. It may be a few years ago that he or she would have drawn that line differently, but now with currently available drugs, you are likely to live longer & better without SCT.
I think I’m right in saying that most UK myeloma patients don’t have SCT, often because patients are considered too old, but sometimes because of other medical complications.
It must have taken the wind out of your sails, to be told No to SCT when you expected to hear dates.
Myeloma seems to do that to many of us, throwing curved balls of one sort or another, which is very unsettling and increases our sense of powerlessness.
A number of people in the myeloma group I go to have not had SCT, one because of a previous stroke. I hope someone comes on here who specifically can answer the questions you posed.
Best wishes for your new treatment plan.

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