[MinParticipant]

My husband had a transplant of his own harvested cells in may this year, whilst he did not suffer too harshly with side effects, there were sufficient to make it a very stressful and uncomfortable time. Unless you know otherwise I think he may hold some kind of record for the length of time he was in hospital following the transplant of his cells.
He got the Cells at about 9am and by 11-30 am He was ringing me to say he could come home! He returned on average every other day, for blood tests. He had one infection,:'-( at the site of his canula, one bad bout of the 'trots' and one bout of nausea where he followed thru. He was extremely weak, tired and listless, with occasional moments of madness, like cutting the lawn two or three days after release from hospital. He had medication to take for sickness, and anti viral s once had antibiotics for the canula infection. But no mouth problems whatsoever. Due in part to sucking iced lollies whilst having the melphalan infusion. 😐
He started taking turmeric tablets once he felt well and kept taking them until August. When his light chains rose to 400 he decided to stop taking them. Within 6 weeks this figure rose to 1700. I leave it to you to decide if they were beneficial in preventing the rise earlier? He has just been told he will have to start medication again.

[brochoParticipant]

Hi Min I dont know much about the possible benefits of turmeric I shall have to read up on it , but the timing is interesting . In my case on both times when I have relapsed there as been only a very slight rise in my light chains despite a tumour and quite a lot of new bone damage . I am beginning to think that there will be less reliance on paraprotein and light serum free light chain levels as an early indicator of relapse in the future as I am one of several people lately .Has the possibilty of a second sct been mentioned for Peter? love Bridget x

[DebsParticipant]

Hmm, Min that is really interesting.

I used to take 8g of curcumin a day. But then over the summer when it looked like I might be moving from smouldering to full myeloma (oh if only it was so easy to know which is which!!)and when I found that my bone marrow had gone from 10% to 50% abnormality in a year, it made me rethink. Up till then it had made me think it was keeping my paraprotein in check, but then I decided it couldn't be helping at all.

So I have just decided to can it and see what happens….perhaps I've made the wrong decision. It's so hard with this to know what helps and what doesn't isn't it. None of the consultants seem to back it but yet so many people say it helps :-S

I have my next check up on the 4th so we'll see whether or not my figures have got significantly worse since I stopped….if so, perhaps I'll be back on it like a shot!!

Debs x

[BellaRSParticipant]

Hi!

Like Debs I'm a smoldering kind a girl… I've looked at curcumin but am not sure whether the potential "down" effect it has been reported to have on paraproteins is a real one or not. I've got rheumatoid arthritis (just to add to my pleasures!) and after recently starting Humira (a biological anti-TNF drug) my paraproteins sank to the floor. It feels great when that happens but at the same time, I'm not sure if it changes my MM prospects at all. Maybe it will just make it harder to spot if/when my paraproteins have gone too high and I might need treatment. But on the other hand, if what causes organ damage are the paraproteins and their kappa/lamba friends (note that I know nothing about this!!!), then surely anything that downs the level of paraprotein must be good for the body.

Bella

[MinParticipant]

Bridget, the Doc discussed a sibling donor sct, but sort of played it down with the 20% failure rate, but in truth, the siblings Peter has access to live 'down south' and both have their own health problems. His youngest brother lives abroad and and not communicative!!! if you know what I mean. Youngest sister has fallen off the face of the earth. By choice. He has sufficient cells of his own for a future attempt, but quite frankly the more I read about them the less l like them. the next treatment regime sounds far more interesting and promising. I mean a company that is willing to give you your treatment for free if it doesn't work must be fairly confident in the outcomes. Following which lena…. whatitsname that I cant pronounce yet is the next best thing.
Most importantly Peter is not so dreadfully ill as he was at diagnosis, and in better shape health wise to cope with whatever this treatment brings. CDT regime allowed him to gain some weight and some strength and a little energy without which he would not be fit enough for the next battle.
i have just today ordered a new batch of Turmeric from Healthspan and what the hell we grasp at straws and pray;-) Min

[brochoParticipant]

Hi Min I understand about the family thing I have an absentee brother who would have been my only choice but he is rarely seen !!My hospital would not consider a donor transplant for me anyway the last time it was discussed the high mortality rate was stressed as a serious factor given the overall state of my health However they are now going to give me a second sct using frozen cells from the trial I was on last year , previously it was a definite no ! This is a bit of luck really because harvesting those cells last year was very difficult and Idont think I will be able a have another go. So like Peter I am on velcade , for 6 cycles Just beun the second one and apart from dex sleep deprivation and some constipation its not too bad .All we can do is go with what feels right at the time I suppose although I must admit to still having moments of resentment that I only managed a 3 month break after a year of hard treatment Fingers crossed that we all get a decent one this time The support we give each other on here is such a godsend to be able to compare notes as well Heres to carrying on!! love Bridgetx

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