[ali49Participant]

Hello everyone, this is the first forum I've ever posted on (and my typing is sooo slow!) I was diagnosed in January and was entered into a trial with long dialysis sessions and BDD chemo. All my focus was on getting over the shock of diagnosis, (renal failure? I thought I was a bit tired!)and achieving some kind of remission. So far so good as I was off dialysis after 6 weeks and finished chemo in May and have 'plateaued'.

I have been discussing ASCT with my consultant but he feels that with my poor renal funtion the risks (death, back on dialysis,) may outweigh the benefits. At present I feel well, am back at work full time and not 50 yet!

Any thoughts/advice would be very welcome.

[eveParticipant]

Hi Alison

Welcome to the site,Good to know you have plateaued,and are back at work ,my husband started treatment in February,CDT,but has had to start Velcade.
SCT is not recommended by his consultant,because of damage to lungs.we do not have that option to decide yet.:-(

There are a few people on here who have chosen not to have sct,because of kidney damage,one is Jo,she is on holiday at the moment,but i am sure she will reply to you when she gets back.:-)

Glad to hear of some one doing well,good news is always welcome.Eve

[mhnevillParticipant]

Dear Alison

Welcome to the site from me too, but sorry you have to join this elite club!! Good to hear that the dialysis and drugs have worked to get you to a plateau. I wouldn't worry too much about not being advised to have a SCT at the present time. There are in fact Trials going on in America at the moment to compare SCT against other treatments. With the new drugs coming on stream you have a good chance of beating this horrible MM back without resorting to what, for you, might be such a high risk treatment.

Do keep in touch and tell us how things go.

All best wishes.

Mavis

[ali49Participant]

Dear Eve and Mavis

Thank you for your comments, it is nice to be part of a supportive group:-).

I did follow a link that someone posted to a site where a Dr Berenstrom (I think!) was expressing his expert opinion that SCT is becoming less essential because of the new drugs available. Because of the trial I was on I had Velcade as part of my chemo so that was a good start. Eve I hope your husband has a good response to it.

Glad to 'meet' you both,

Alison

[eveParticipant]

Hi Alison
You have joined a good group who are just like you and will be there to support you,and offer wisdom and comfort,and in the middle you will find you will be able to smile laugh and cry.
It,s a bit of a shock to the system I would not have dreamed in a million years of posting on a site like this,but I cannot tell you how much it has given me in support,
So try to give as much as you will receive,there is someone else out there starting there journey,:-)
Welcome to the club Eve

[GillParticipant]

Hi Alison

Sorry to see you here (in the nicest possible way)I think this is a site that we are all very grateful for but all we wish that we had never had to even look for it let alone join.

It is my husband who has mm diagnosed in 2008 when he was 53. He has had 2 STCs but is not doing so well with this second one (much slower recovery.

I hope you stay feeling well for a long time to come

All the best Gill

[scott9Participant]

Hi Alison

I'm a couple or three months ahead of you in this disease. My kidneys are also badly impaired. They were down to about 15% a month or so ago. I'm with the low clearance unit at Kings College Hospital in case I need to go on dialysis.
Anyway, I recently finished my treatment and was offered the choice of SCT. I declined and went instead for maintenance therapy. In my opinion, the risks outweighed the potential benefits. There is no guarantee that a SCT will give you x amount of years in remission. It may fail within a few months.

As you already know you could end up with far worse kidneys and indeed there is a higher risk of death during the procedure.

Dr Berenson also is not hugely in favour of SCT so it is not universally supported.

Hope this helps.

Scott

[PerkymiteParticipant]

Hallo Allison,

Firstly welcome to our merry band, not a band any of us wanted to join but you will find lots of support here from fellow sufferers and Careers. Have a good look around the sight it has bags of up-to-date information on it and this forum is just a very small part; albeit a nice part though!

I assume you are talking about an Auto (your own stem cells being reintroduced back into your body after high does Chemo) and not Allo (a relative or donor matched stems cells being introduced to your body after high does chemo).

Allo is considered risky even for a fit person, but several on here have done it, with different degrees of success. Auto is almost routine now, provided you are considered fit by the Consultant, apparently the cut off line is 70 years of age.

I had my Auto STC last December aged 68. It went very well with the exception of one 24 hour period when I had a serious infection, touch and go then but I am here to tell you about it! They gave me a maximum of 18 months before it resurfaced again but I decided (a maybe) 18 months was worth the risk, and who really knows I might just beat their prognosis. I have had a good year so far life back to normal, as much as it can every be.

I have to be honest I would have taken my Consultants advice in this and if he had said no ASCT I would have been very disappointed but would have accepted it.

Hope this is of some help.

Kindest regards ? Vasbyte

David

[ali49Participant]

Hi Gill, Scott and David,

Thank you for the welcome to this unique club!

My consultant was very explicit regarding all the pro's and con's and agreed that it was not an easy decision to make and that I should 'go with my gut'.
At the moment my gut says no to Auto SCT as my renal function is aprox 10%. To get more time (and it does not guarantee a lot more time) just to spend it on dialysis seems a bit pointless. My hopes are pinned on all the new drugs coming along.

David, my Dr did explain about Allogenic SCT and said that a very few people may even be considered cured by it, but the risks are much much higher so It's not really an option for me.

[GillParticipant]

Hi Ali

I know that I have looked at a number of American sites and it seems that they carry out far more Allos than here. They do seem very successful if they are a strong match. (Stephen is an only child so no chance there)

He is on his second auto. As far as I can understand (and believe me, although not stupid, I do find it hard to get my head around mm) When given an auto the stem cells are removed and cleaned but cannot be cleaned completely as they would be killed off for good. When put back the stem cells still contain some mm. So the stem cells left in your body are all killed off with chemo(no more mm)but when put back your own stem cells still have some mm left in them.

I am sure that if I am very wrong someone on here will put me right.

If you have a good allo SCT. Only clean (non mm contaminated) cells are given. Then the huge risk is GVHD

BUT if it works you can be given a completely clean bill of health and may be classed as "cured" How marvelous is that!!

I am sure that huge advances are being made in the study of mm and know that one of Stephen's consultants told us that mm is considered very "sexy" at the moment regarding working on a cure.

Good luck with whatever you and your medical team decide on. Do stay in touch

All the best Gillxx

[BADGERParticipant]

hi Ali

Just got back from holiday so sorry for delay in replying I was diagnosed in Jan 2009 with MM and renal failure at one point just 10% just managed to avoid diaysis I had CDT until may 2009 and apart from premidrinate once a month a lower dose of 30mgs to protect my kidneys and sodium bicarbonate tablets for the kidneys no other tratment I chose not to have an SCT for two reasons 1.a greater risk of death during the procedure and 2. the posibility of dialysis for the rest of my life I wanted a quality of life for as long as I could I have not regretted it last paraprotien test was in july and it was still in a band too fient to measure so I can say I am ok at the moment thats all one can say, I have read with interest James Berensens thoughts and it gives me a lot of hope
I hope this helps you please ask any questions you have
Love Jo

[scott9Participant]

Hi Jo

I hope you had a great holiday and the weather was kind to you. My wife and I are off to Spain for a couple of weeks next Tuesday – can't wait.

What is the premidrinate for – your kidneys or the cancer? When I got to almost remission, I went on maintenance therapy which is basically three Revlimid pills per week. I'm also on a vast number of sodium bicarb pills re my kidneys.

I saw my specialist yesterday and I need yet another blood transfusion. Hg reading at 7.8 so three bags of blood tomorrow. He will put me on something called EPO injections next month as this will help avoid transfusions.

I fully agree with you re quality of life and my cancer still seems to be under control so SCT not needed as yet. I'm back playing golf again and now have a good excuse for slicing the ball!

All the best

Scott

[BADGERParticipant]

Hello Scott
thanks we had a good holiday I hope you have a great time in Spain,8-)
I take the premidrinate for the Myeloma to strengthen my bones my sister in law calls it my bone food! I also take sodium bicarbonate tabs for the kidneys 9 500mgs a day also an alpha calcidol 0.25 three times a week kidneys seem stable at the moment When first diagnosed I had to have blood transfusions from jan 2009 until august 2010 every couple of months they said its was because of the weak kisney function I have settled down now my blood stays at around 10.00 I seem to manage with that my consultant didnt want me to have EPO, dont know why? .There is a lady in my support group who has been on Revlimid maintenance for nearly five years she was one of the people who had to fight to get it our MP helped her it really seems to work for her
Keep well:-)
Love Jo

[scott9Participant]

Hi Jo

Many thanks for the information. I was really pleased to hear about the lady who has been on maintenance therapy for 5 years. There is medium/ long term hope for me then. Plus the more I read about SCT on this forum, the happier I am to have avoided it!

Re pills, I am on 12 X 600mg sodium bicarb per day plus the alfacalcidol. I also take Omeprazole to prevent sickness plus of course the revlimid and an aspirin to prevent DVT. I must ask about premidrinate as I guess something should be done about my bones at some stage.

Thanks again

Scott

[BADGERParticipant]

Hi Scott
thats rather a lot of bicarb does it upset your stomach a bit mine does some times. I forgot I also take on Omeprazole 10mgs and a 75mg aspirin
its a wonder we don't rattle. I agree about the SCT it was not for me if I was a lot younger it might be a different story have a good holiday8-)
Love Jo;-)

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