[paul1967Participant]

Hi,
I was diagnosed with Myeloma in March 2018. I was 51 then.

I had outpatient chemo then finally on September 2018 had a stem cell transplant ( my own)

For the last 21 months I have been doing well.

I was due for my 3 month consultation next week and had a blood test in preparation.

The specialist phoned me a week early with bad news and asked to to present myself at the hospital the same day.

I knew it was coming but had hoped for a bit longer.

My question is, if I go through the same treatment again, is a 2nd stem cell transplant likely to not be as good as the first?

I had two lots harvested in August 2018.

What should I expect?

[andyelsdenParticipant]

Sorry to hear your position. I was diagnosed in Ovt 2016 had an autologous SCT in April 2017 which failed around Oct 2018. I found it a tougher decision on what to do next. The statistics shows that 2 years to failure is around the average for a myeloma SCT and that a second one on average lasts half as long as the first one. After a number of discussions with my Consultant I decided not to do a second SCT but to take a chemo based treatment. I have been on a Carfilzomib/Dexa combo since Nov 2018 and feeling as good as I did post SCT. The treatment needs regular hospital visits which is a bit of a downside.My treatment has been on hold for the last 3 months due to risk of covid being greater than myeloma risk. I have gave bloods three weeks ago and have a consultation next week Hope for the best.

Andy

[paul1967Participant]

Thanks for the reply. So it looks like mine lasted about 3 months longer than yours so not much in it.

It is good to know there is an alternative.

I’m not keen on the SCT as the chemo prior to that really knocked me out for weeks. I lost so much weight as I was unable/willing to eat then when I did, it went straight through or back up again.

Apparently I’ll be on DVD this time. 1st time was on VCT

Thanks

[kevinParticipant]

Hello Paul

I was diagnosed in 2006 age 48. Have had 2 relapses since then. My first two treatments were CDT both followed by a SCT. My own cells. Both times I achieved about 4 1?2 years full remission. My last relapse was in 2017. Then I had carfilzomib and dexamethasone as my initial treatment followed by a smaller dose as maintenance which finished in Nov 2019. As of now I am in full remission. Had a blood test yesterday so hope to find out soon if this is still the case and am sure it is. I believe that 2 SCT are the most you get. The only treatment I am on at the moment is Zometa which I have every 3 months. I am hoping to get at least the same remission if not better. I had the 2 SCT as it was my Consultants treatment plan and I have great faith in him.
Best wishes
Kevin

[paul1967Participant]

It is nice to know there are still options after 2 x sct

It is clearly something I need to discuss with my consultant.

I’ll probably be in hospital another night or two so will see him again before I leave.

I’m dreading more SCT but if that is the best then I will do it.

Sucking ice cubes for hours wasn’t a nice thing to do. Especially as they where huge. They must have worked though as I never had any problems with my mouth etc.

[Author]

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