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 SCT are the worst and anyone who says otherwise is kidding themselves.
Get ready to feel rotten for most of this period because this is when your blood counts are dropping like
a stone and there's no way you can be feeling well at this point but the good news is once you get past
the 10 days they will start to rise pretty quickly and with blood and platelet transfusions to kickstart
things you will soon start to feel stronger and well again and more importantly start eating and drinking.
Both of my SCT's were more of less the same apart from the e-coli I contacted due to my low bloods.
Infection is the main bug bare and I'm afraid no matter how careful you are you will get at least one so
the first instance you notice your temperature hitting 38 it's straight onto your Hospital and no delay.
And don't forget the ice cubes 30 mins before and after the Melphalan to prevent the mouth problems.
It does really work as the nurses will no doubt tell you.
This I hope will help you too Vicki and Colin.
Best of luck to all.
Keith.
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 transplants so I was lucky to get a second bite of the cherry although the second time was never as good as the first remission duration or quality of life.
Most if not all has already been said about transplants so I won't go over old ground.
Is it worth it? I'll say it is, my first one was no picnic and I still went back for a second one.
I was also told the worse case scenario but I thought 2 deaths out of 850 wasn't a bad record.
Then there's all the possible side effects but you should just look on the bright side and be positive because it won't happen to you with a bit of luck.
Some say they breeze though it,well I didn't but I still say go for it because it's still the best way of protecting your remission and thereby staying well.
Second SCT's are another thing,they are quite rare and usually don't last as long although even this is not always the case because of the individuality of the patient and disease.
And if after all of this waffle you are still unsure listen to the experts and they will tell you the SCT route is by far the best way to go.
Best of luck with lot's of good health.
Keith.
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 somewhat.
What doesage of Dex did you start on and are you on a trial?
Keith.
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 you're not happy with the answers then make them explain in more detail and don't leave until you are happy no matter how busy they might appear.
Take care both of you…Keith.
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
would rather take the preventive route than treat the problem after it arises which makes perfect sense
to me.
BTW Helen I'm not looking forward to this funny taste scenario which I remember from the last treatment
nor do I relish the fatigue but it goes with the territory I suppose and as you rightly say if it's working then
that's all that matters.
Take care everyone and keep fighting…Keith.
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 it.
He also mentioned blood thinning injections to head off any problems with clotting.
My previous treatment was Velcade before having my 2nd SCT in August 2011.
It quickly got me into remission but my quality of life has never been as good as it was after the first SCT.
I think once you eventually relapse you never can get back to where you were and the remission times shorten.
I got 2yrs 4mths first time with zero PP's for 2yrs but 2nd time only 8mths and never lower than 2.95 with continuous aching and fatigue.
It's much the same in football when a club goes up from the Championship to the Prem…first season they take it by storm 2nd season they get sussed out and things are much more difficult.
So my advice would be make the most of that first remission because the next one may not be quite so long.
And that's my ramble and I haven't even started on the Dex as yet.
Take care of yourselves…Keith.
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 PP's came down from 14 to 2.9 so best of luck.
Keith.
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 being treat without any respect and you are right to be annoyed.
Unfortunately infections are abundant with MM as Tom says so you've just got to battle on through it.
Best wishes to you both and I hope it gets sorted and Slim starts to feel better soon.
Keith.
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 period along with with a high dose of Dex which will be gradually reduced further down the line,number of actual cycles I'm not sure at this moment.
As for Carfilizomib I've also heard good reports about it and then as you say returning to previous therapies is another option…Velcade my last treatment worked very well for me with little side effects.
You have confirmed what I thought in terms of continuous ongoing medication but I consider that a small price to pay so long as the disease is kicked into touch for as long as possible.
But there's one small point I'd like to make and that is….does this mean the word remission no longer applies?
Answers on a postcard.
Keith.
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 feared as Lytic lesions were found on my skull prior to my first relapse 18mths ago.
I mentioned this to the Doctor who said he would be keeping an eye on it incase it became bigger.
If it's not one thing it's another.
Another thing I need to know is will all of this mean I'll be taking meds for the rest of my life however long that is?
This is one of the things I'll be asking him on Tuesday along with anything else I can think of.
Cheers Guys.
Keith.
Hi Helen well just as I thought I've relapsed for the second time and have been penciled in for a clinical trial.
I'll put more details in a new post asap.
Take care.
Love and best wishes… Keith.
