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
Thank you for your kind reply on my post. I am looking through the forum and I am sorry to hear MM has reared it's ugly head again for Slim and yourself. As I'm sure you are aware there is plenty of support on here for you both.
Sending you kind wishes and support,
My Dad also suffers with PN, there is info from a Professor on Myeloma Uk Tv (look at bottom of the page). Has your mum tried Capsaicin cream or Vicks on the soles of her feet? Capsaicin cream is only available on prescription here. Perhaps you could get this in Iran.
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…[Read more]
Sorry I haven't been on here for sometime I'm just catching up on posts, my Dad was diagnosed with AL amyloid and MM a year and a half ago and you are correct both are treated the same way. My dad had a course of CTD which gave him a complete response. He will be starting velcade in the next few weeks after AL levels have reared there…[Read more]
Hi Cinzia, you are most welcome I know how difficult it is to try and find other people with AL and when you have MM to deal with to it's alot! I can only imagine how you must be feeling having children and trying your best to be strong for them and your husband I do hope your heart heals and you get your SCT do they have SAP scanners in…[Read more]
Hi Cinzia, Sorry I haven't been on here in a while I have only just seen your post. My dad aged 63 had MM and AL Amyloid. He had CDT last year with a hope to harvest stem cells after his kidney function improved, he has Amyloid deposits in his tongue and some in his kidney, can I ask where they have detected yours? My Dad has to travel to London…[Read more]
I've not been on much lately but have been reading through posts catching up on how everyone is doing and see there are many new faces in the forum. For everyone who has helped me in the past I want to say a huge thank you and for those who are new I would like to give some info,
1 year ago my dad was diagnosed this amyloidosis…[Read more]
Hi Sarah and Henry, welcome I see you have already had lots of great info I pop in and out of the discussion forum from time to time and find it is a great place for info and advice. My Dad was diagnosed with Myeloma at the start of the year worked through CTD until cycle 4 and then he was just too tired. He wasnt suitable for STC as he has…[Read more]
Hi Mike, I'm on Facebook and Give Blood Scotland have a page that gives updates of where they will be visiting regularly, I'm sure its the same for the UK, perhaps we could ask them to feature this on one of there Facebook posts? It certainly has many members, I am one if them and was'nt aware that this option is available I'm sure there are…[Read more]
Can anyone tell me if its usual for free light chains to increase after CTD has finished? My Dad was given a complete response to Amyloidosis and MM 6 weeks ago and FLC and PP levels had platued. His bloods are sent down to the Royal Free in London as they look after his AA (Amyloid) and they send a report of the levels by post to…[Read more]
clarabell replied to the topic Only me Mum has finished CTD finished now Velcade!!! in the forum General 10 years, 9 months ago
Hi only me! Great to get an update on your mum, hope all goes well going forward. Dad is still on CTD on cycle 8 and still levels are dropping nicely. We have been told he is suitable for SCT and had no suggestion of velcade etc as an option, Dad feels really drained but it would be another few months before he gets his SCT should he want to go…[Read more]
Hi Gill C,
Hope you get out of hospital soon, my dad was diagnosed in January and had Radiotherapy which has helped with pain, he has a mass of myeloma at the bottom of his spine and hip. He is on CTD and other than tiredness is doing ok. We're all rooting for you on here and here to help!
Gill re:constipation, make sure you take all the…[Read more]
Loving your new profile pic it suits you! My Dad is being considered for SCT so I am finding it great picking up all the comments on your question. He has been told its not something to go into lightly as the blast of chemo is likely to make him quite ill for a week, however he is 62 so they are having a meeting to discuss. So far he…[Read more]
I haven't been on the forum for a while so I am upset to hear John isn't doing so well. I am sending you love and big hugs and strength to you both, you were so kind responding to my previous posts about Ameloiyd. I think your memory book is fantastic idea and your kids will treasure it, you your family and friends can compile some…[Read more]
Hi Christin & Meike,
I just wanted to pop by and wish you and your Dad/Husband strength in the coming months, it sounds like you are a close family and that will get you by. Asking questions as time goes on and when you understand more about MM will come in time, its such a maze of terminoligys(spelling?) that none of us have came across…[Read more]
Thank you so much for your post,
You are right in a way we are now getting to grips with AA and MM, as with John my Dad posts bloods down to the Royal Free every month and so far the levels are coming down nicely and at a good rate, we will be going back down in August again for 6 month scan. Dads AA is on his tongue, nerves…[Read more]
David can I just say your info on getting fluid down is working a treat for my Dad who is now pouring pints of water at said times instead of continually pouring smaller glasses time after time and he is now finding it easier to drink so much so thanks for the tip!
Only Me! Good to hear from you and that your Mum is doing so…[Read more]