[mmsuffrahParticipant]

Hi GC, 6 years ago I did not produce sufficient stem cells after 3/4 days using granulocyte colony-stimulating factor, or GCSF self administered injections. At the end of the session I was then given a drug called plerixafor which they told me would take 12 hours to work (which it did almost to the minute, 3 separate flushes through my body as it seemed to release the stem cells) and I produced ample stem cells for 2 x STC’s the following day.

[mmsuffrahParticipant]

David,

Explained to me today as consolidation Daratumumab post first STC, then tablets Lenalidomide. Post 2nd STC monthly Daratumumab until it no longer has benefit.

[mmsuffrahParticipant]

David,

Thanks for speedy reply – consolidation was not mentioned so will investigate this week. It might fit in with NICE not having approved maintenance prog and therefore delaying recording of SCT?! Crazy ….. but if it results in at least having Dara for 3rd line perhaps not a bad thing.

Will keep you updated.

[mmsuffrahParticipant]

David, hope you enjoyed popping the cork?!

I was undergoing 2nd Allo SCT over the holiday period following relapse 4 years post 1st Allo SCT. I was put on DVD for six months prior and the numbers dropped quite rapidly for me with few side effects (tho’ now I do miss my weekly steroid buzz). The question once I had opted for 2nd SCT therefore was whether to initiate maintenance Daratumumab thereafter or keep it for 3rd line treatment.

There being little data for the consultants to fall back on, I have taken the gamble of trying long term to suppress the myeloma amongst the new stem cells with the monthly jab and worrying about choice of drugs when it returns ….. hopefully in the distant future!

2nd SCT was smoother than 1st using nearby charity cottage initially and thankfully a speedier engraftment. Just a middle period of 2 days brain fog and grumpiness then plain sailing. Keep smiling!

[mmsuffrahParticipant]

Davidainsdale,

Just found your other thread – 2nd Line Treatment DVD Regime ….. so gained some insight there, thanks. As you say it’s individual. Peripheral neuropathy and usual fatigue aside I have not suffered side-effects so am more drawn to the hope of 3-4 years maintenance free post SCT for quality of life despite the impaired kidneys(eGFR 28) and recovery period. Keep smiling!

[mmsuffrahParticipant]

Davidainsdale,

I am in similar position following first relapse – DVD with the chance of autologous stem cell rescue later. Just weighing up the options – did you have a chance of doing that but opted rather for maintenance strategy? If so what seemed the advantages to you?

[mmsuffrahParticipant]

Is he a single GP or part of a practice? My practice could not have been more helpful, once they’d seen the blurb from Myeloma UK.

[mmsuffrahParticipant]

I too have some irritating moments when words or phrases get stuck in the fog, but only annoying not necessarily limiting. You may be interested to see another forum’s recent comments:

https://myelomabeacon.org/headline/2019/02/19/a-northwest-lense-on-myeloma-learning-to-be-forgetful/

• This reply was modified 5 years, 8 months ago by  mmsuffrah. Reason: Link function did not not seem to work?!

[mmsuffrahParticipant]

… inserts emoji “blown-kiss” !!

[mmsuffrahParticipant]

Rebecca, Very encouraging news ….. I’ll swap you 2 eGFR for 4 years drug free any day!?

[mmsuffrahParticipant]

Stu,

I wondered why my running distances kept getting shorter just putting it down to old age (63 then) and bone idleness. This delayed my MM diagnosis and I only took serious action when dialysis (yikes!) was mentioned as my eGFR dropped to 13 (normal is approx. 90). It appears the wiggly filter tubes leading into them took a bashing from excessive paraprotein, causing my short breath and fatigue as I was trying to redecorate. Six months after diagnosis I ran a half marathon ….. OK, so it was in double the time I used to run it in, but we made it. Then I underwent stem cell rescue and six months after that my eGFR is back up to a staggering 25!! The delightful renal team convinced me to undergo the stem cell rescue as I was very concerned about the effect the chemo might have on the kidneys – and they were proved correct. My goal is to reach eGFR 30 and make it into a lesser AKI stage .. phew! There is sadly not much prospect of further improvement, but that isn’t stopping me from another half marathon in October. Some fatigue yes, but my point is the figures can be frightening, but moderation in all things helps get you back to a reasonable standard of life. I am way better than I was at diagnosis!

[mmsuffrahParticipant]

Jan, Thanks for the reply. I needed Plerixafor to boost 4 days of G-CSF and got a subsequent good harvest however none of the NHS blurb or briefings mentioned abnormal dreams etc – perhaps a good thing!? Getting back to normal now though. Fight the good fight!

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