[MinParticipant]

Hi Jim
Peter starts on velcade on Tuesday next week. His consultant warned him about PN and said to let them know if he has any tingling at all and they will lower the dose and or stop the treatment. How long ago were you on it? What is Acetyl L-Carnitine and Alpha Lipoic acid. do you take it when you have pn or to prevent it?
Anyone got any advice to prevent pn? After only 5months remisssion following cdt really want to ensure velcade works.
Min

[MinParticipant]

Hi David,
the way it was explained to me was that the tissue in the lining of the mouth is renewing itself more frequently and faster than the other cells in the body, and that the ice was a way of protecting those cells. but you have certainly given me something to think about… Having said that Peter had his harvest at a time when he was off all medication but his Light chain numbers were high. 400 or so Because he was having surgery.
He went back on CTD for a further two months before his sct.Getting down to 82 So I am of the opinion that they harvested too many myeloma cells, which he was given back at his transplant. There is nothing whatsoever to back up this theory other than a gut feeling about this because his numbers were low at the time of the transplant and much higher after the transplant.127 Making me believe he received some of the myeloma back. Who knows perhaps if his harvest had been done later when his readings were zero would he have relapsed so quickly afterwards.
How many EARLY relapsed patients never achieved a zero at harvest or transplant? Had to use capitals as the bold and underline don't work even on an apple

[MinParticipant]

Lee that pic makes me all soppy cos Iived in Lincoln mostly Swinderby for about 10 years when my husband was in the RAF. Often wish we had stayed there. Because its two cardigans colder her in the North East!

[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

[MinParticipant]

Very Good Just hope I can get the hang of it. Love the opportunity to delete as sometimes have second thoughts after a post so thats a brilliant idea. Using an apple mac and will try windows later. Tried windows all morning and could not get on to post Well done team on the improved layout. Attached photo is taken in August when we went to the White Festival in Loule Portugal. Showing him indoors with MM who got me into this site! In case your wondering that is his walking stick upside down, Not a Tail. !

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