[cathParticipant]

Cut myself off!
So a rollercoaster with the steroids.
I may look for a support group, that sounds like a good idea too.
Thanks for you helpful sharing of you experiences.
Best wishes
Cath

[cathParticipant]

Dear Liz, Lottie and Jane,
Thanks you so much for taking the time to reply to my questions, it is invaluable to hear real life experiences.
Jane, your experience of discussions around prognosis were particularly awful! Top gardening tips, thank you.
Lottie, the immunisation procedure given to you seems very comprehensive… I do hope travel is possible before all complete as it sounds as if it all takes about a year? That was reassuring that you felt well enough to work between induction and STC.
Liz, you had a long wait for STC after harvesting, must have been difficult!
I am finding the whole adjustment difficult- from working to being off sick – while not feeling desperately physically ill , but not functioning normally either! The steroids ave really been awful and were reduced last week as I was becoming progressively more manic with only a little few hours sleep for 3 days, then crashing for 3 days…one normal dy

[cathParticipant]

Dear Jane, Liz and Lottie,
Thanks for your helpful responses about the ‘100 days’. It seems advice varies a bit – but from what I understand, essentially this is a random number of days someone has come up with, within which time most people recover from STC and after the 100 days, tests are done to see if treatment has worked. Is this when the next bone marrow biopsy is done?

Lottie you mention immunisations only starting 6 months after STC, this seems along time to wait for things like tetanus (I’m a gardener!) …… and presumably you can’t go abroad until you’ve got all you childhood immunisations? At this stage for me (one month into induction) it is all along way off, but I really need something to look forward to – it is such a long treatment, especially if there is a big gap between induction and STC.

Is the gap between induction and STC entirely because of waiting lists? I was told here that they would refer at the end of cycle 3 to the regional centre for Harvesting and there was currently a 12 week wait from then. It seems from the forum that other people have waited much longer, and then waited again for a hospital bed.

Work…. Does anyone have advice about this? I was signed off now and relieved to be as I had bad reaction to the high dose steroids. Now on a lower dose I am at least sleeping, but my brain is like sludge. Did anyone go back to work in the gap between induction and SCT? Do you go back to feeling normal at that time?

I actually had MGUS diagnosed 10 years ago after fracturing a vertebrae during an ill- advised after school sledging trip! The type of myeloma I have is SLIM, and luckily no bone lesions or other complications, with good genetics from the bone marrow biopsy. It has been hard to establish information about long term prognosis from the 4 different doctors I’ve seen over the past few months… they all say ‘good’ and give an anecdote about a patient who was in remission for 5-7 years. I am guessing that as this type of myeloma is relatively new addition (8 years ago?) that there is not the research. The ‘ask the nurse’ on this site only had older research. What are other people’s experiences of trying to discuss long term prognosis with their teams???

Sorry I have brought up so many different topics here! This is such a helpful place.

Cath

[cathParticipant]

I have been reading your posts, which has been really helpful.
I started cycle 1 of induction treatment a few weeks ago and am planned for STC.

Reading all about your experiences has given me a better understanding of what is ahead…please can someone explain what is the ‘100 days isolation’? I’ve heard 100 days after transplant mentioned too but don’t understand the significance of this.

Looking forward to hearing more
Cath

[cathParticipant]

Thank you Susan, that’s helpful to know that sedation is possible.
I’ll insist next time!

[cathParticipant]

Thanks for your helpful replies. Has anyone else in other areas of the country been offered sedation for bone marrow biopsy?

[Author]

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