[clarabellParticipant]

Hi Everyone, I've been on/off the forum for 2 years dipping in and out perhaps selfishly commenting only when I have time, I have 2 kids and try my best to mange my Dad and his MM and Amyloidosis and support dad and Mum because like me they are trying best to understand both conditions and the medication dispensed. I am able to take more on board than them and have been doing ok so far. I thought I was quite knowledgable about stem cell transplants. However my Dads MM is in remission his AL is not and we have been told time is of the essence as Dad is 64 (65 in October) and to control the Amyloidosis SCT is the best option. I have read all the literature on SCT but most relates to MM. After speaking to the consultant AL complicates the risk of fatality and after his appointment with the consultant we were led to believe the transplant would only guarantee 1 year of remission but I don't know if we were understanding what was said because I can't believe the NHS would undertake a procedure that would cost so much money, where my dad would be recovering for upto 9 months of the 1 year of remission it doesn't make sense?

We are at the Beatson this week for pre stem cell harvesting tests then going to the Royal Free Hospital in London next week for a scan.

Any info our advice would be greatly appreciated because at the moment my Dad seems unlikely to commence with the SCT if it means his quality of life won't be great c xxx

[eveParticipant]

Hi

I cannot advice you,but I know someone who can,ring the Myeloma Nurses on here,there are also video s in the library part of genuine people who have treatments,when you have two disease s it complicates things.

I will say no one can guarantee what remission. Anyone can get,they can only hope for time,and if doctors valued patients against cost,there would be no treatment .

Sorry I do not know your name.my name is Eve

[clarabellParticipant]

Hi Eve, my name is Clara, thank you so much for your reply Dad is going to have his stem cells harvested and then take some more time to decide whether to have SCT x

[bandityogaParticipant]

Hi Clara

Do you live in Scotland?

Good luck with your dad's SCT

Maureen

[clarabellParticipant]

Hi Maureen,

Thanks fie your good wishes, yes we live in Lanarkshire in Scotland. Dad is going to have his stem cells harvested and then make a decision on whether to go ahead with SCT once all his results are in x

[bandityogaParticipant]

Hi Clara

We live in Dunblane in Perthshire. We don't know if my husband will get a SCT.

It is a horrible disease and hard to cope with. How is your mum coping?

Maureen

[Author]

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