Hi Judd,

Only just seen your post and can certainly understand your feelings. I myself was misdiagnosed for over 18mths by my GP who said it was all in my mind and there was nothing at all wrong but I knew otherwise. I saw a chiropractor and had massage and manipulation because my lower back pain was so bad I was unable to walk more than 10…[Read more]

Hello Mari,

I also give best wishes to you both and hope all goes plain sailing for the 2nd SCT.
I felt more prepared 2nd time around due to my prior experience but due to an e-coli infection the ordeal didn't feel any easier and I only hope you get more than the paltry 8 months remission I got from it.
When I had my harvest they managed to…[Read more]

Thank's for the info Dai and pleased to hear you have not relapsed. I also have been following the progress of Carfilzomib and at the last MM info-day I attended the consultants there were also very bullish about it's use.
The only problem I can see is the snails pace at which everything seems to go at once things reach our shores.
Your…[Read more]

Thank's for the prompt reply Dai and very succinct as usual.
I'm taking 2mgx20 on days 1-4 the same 9-12 and 17-20 is that the same as yourself?
I don't have the Light Chain MM so it can't be traced in the urine and even the blood test is not so conclusive which means a BMB to be absolutely sure. I've also read on here that the Free Light Test…[Read more]

Hi Penny
Just wanted to wish you all the best for Monday and your SCT.
The procedure itself is very quick and simple but the high dose Melphalan does knock the stuffing out of
you because it wipes out your Bone Marrow ready for the new Cells to rescue making new Bone Marrow.
The 10-14 days post…[Read more]

Hi Vicky/Colin
I had my first SCT May 2008 and got a CR with zero PP's and 2yrs 4mths remission before relapse.
Then second SCT August 2011 which only lasted 8mths before I again relapsed and have now just started on Revlimid and Dex for an indefinite period as long as it's working.
When I had my first harvest there were enough cells for 2…[Read more]

Thank's for all your replies guys…Like you Dai I also take 25mg of Rev for 21 days and the dreaded Dex for the first four days of each week although I've been told this will be gradually scaled down.
The first two cycles are the worst apparently mainly due to the fatigue but then as the body adjusts things hopefully will settle down…[Read more]

Sorry to hear about your mum's relapse after only 7months,after going through so much you feel cheated after such a short remission.
I only got 8months from my 2nd sct after getting 2yrs 4mths from the first.
I start Rev/Dex on 25th of this month so like you it's still unknown territory.

Hope all goes well.

Keith.

Hi Jean
Very interesting what you say about the Protein count.
My own went up from 5to10 and then more than doubled to 22 all in the space of 2 months.
I then had a Bone Marrow biopsy which is the definitive test and this showed 35% MM activity confirming a relapse.
One thing I'd strongly advise Jean and that is ask lot's of questions and if…[Read more]

Hi Jean
Maybe you and the Consultant are talking at cross purposes and you do need to ask to clarify.
Protein is good Paraprotein is bad is how I understand it.

Keith.

I don't know about the rest of you but I'm with my mate Tom!!!
We are certainly on the same wavelength LOL.

Keith.

Hi Ian
interesting to hear of someone returning to a previous treatment.
I've heard doctors speak of this but not from anyone who has actually done it.
Hope all goes well for you and the Velcade works.

Take care…Keith.

Hi Andy
you say you have Tinzaparin injections everyday.do you administer those yourself?
I don't know what he intends to inject me with but I don't fancy having to go to the hospital everyday.
The Consultant did say he preferred this approach because he had witnessed many cases of clotting and…[Read more]

Hi everybody, just to add my bit to the debate I had a BMB last month which showed more MM cells in the marrow than would be considered normal.
My Consultant said that if nothing was done then it would only get worse so more treatment was the only answer.
He mentioned Rev/Dex and a clinical trial with me being one of it not the first to be doing…[Read more]

Hi Andy,sorry the SCT didn't work my first one lasted 2yrs 4mths but the 2nd only 8mths.
In some cases the second can be longer than the first but I think it's rare for this to be the case.
I had Velcade after my first relapse and it worked very well and I hope this to be the case for you also.
The side effects were very minor in my case and my…[Read more]

Hello Eve/Slim, That nurse needs reporting,she may know her job but she fails to do it properly.
I know my Hospital and staff are first class(although I don't praise them too often…don't want them to get too complacent) and when I read things like this it makes me think how fortunate I am here on Teesside.
This disease is bad enough without…[Read more]

Thank's Dai for a very informative posting from you as usual.
Although Rev and Dex are well tried and tested the Consultant did say that I would be on a new trial and that I would be the first to be on it.
Maybe he mean't first in my area I don't know but will find out more when I see him next Tuesday.
Apparently the Rev is given over a 21 day…[Read more]

Thank you Helen,Debs and Dai for your kind words.
There's another thing I forgot to mention,I have what looks like a lump near my forehead which started to appear around 3 weeks ago.
It feels tender to touch and I pointed it out to the Consultant who said it could be a Plasmacytoma which if so could be zapped with RT.
This was another thing I…[Read more]