This topic contains 18 replies, has 15 voices, and was last updated by 
clare 11 years, 6 months ago.
Hello Everyone, I'm Clare, and my 67 years young mum was diagnosed with myeloma in October 2012. She has just completed 6 cycles of CTD, and responded well, with her pp levels dropping steadily from 33.5 to 5. Her consultant has offered her a referral to Barts for SCT, but this treatment sounds terrifying, and we are all a little scared! does anybody have any experiences with Barts? any advice will be very gratefully received. thank you, x
Hi Clare,
I hope someone comes along soon that will direct you to all things Barts and that you are suitably impressed.
Two things:
1. Your Mum has been blessed with an excellent return from her CDT by getting her PP's down to 5… well done her. 😎
2. The SCT process (the end bit, after the stem cells are returned) is unpleasant, no doubt. Your body is submitted to a real good scourge, leaving it totally neutropenic and without a leg of any sort to stand on… then your stem cells are returned and you have to wait for them to graft onto your bone marrow and start showing up in your blood results (done on a daily basis but we all know you have to wait awhile). Once the magical number 0.1 is achieved it's a matter of 'Glory Hallelujah' and home within a few days for a long and slow recovery. But… while it is unpleasant and you feel as weak as a new born babe, with some similar attributes, it is not and I repeat, it is not terrifying. 🙂
Unpleasant, because your appetite can be affected drastically… some people suffer with mouth problems but there are medicines that overcome this condition… as a matter of fact there are medicines for almost all scenarios connected to the SCT process and most people only have a few problems, many very few and some none at all. It sounds terrifying but like most things in life the actuality is far better that the imagined. 🙂
Now then, where's that Barts expert. 😉
Dai.
Hi Clare
Welcome to this Site. Sorry to hear your Mum has Myeloma. All of us on here know how difficult it is to comes to terms with this diagnosis.
Before your Mum decides perhaps she should ask her Consultant how agressive her Myeloma is. She has obviously responded well to SCT. There are several of us around your Mum's age, who haven't had a SCT, and are still here to tell the tale. In America some Consiltants are beginning to think the SCT shouldn't be the up front choice for Myeloma now there are so many treatment options.
One possibility is to ask to have a stem cell harvest, but not go ahead with a SCT at this stage.
Love to you and your Mum.
Mavis
Hi Clare,
Welcome to this forum, I am sorry you have had to join us but I am sure, like me, you will find everyone here very helpful and supportive.
My husband Phil was diagnosed with MM at the end of May 2012 aged 43, quite a shock for both of us! Phil has been treated at Bart's since his diagnosis, firstly on the PADIMAC trial which was dex-dox-velcade and then for his SCT. We have been very happy overall with the care he has received at Bart's, there have been some days that have tested our patience but I think that would happen anywhere with the stress and worry that can sometimes happen during treatment :-). Dai and Mavis have already provided some helpful viewpoints and although I won't claim to be a Bart's expert I will happily try and answer any questions you or your Mom might have. If it helps I documented Phil's SCT in this thread:
http://www.myeloma.org.uk/patient-services/discussion-board/treatment/phils-sct-journey/
The SCT was the right choice for Phil and although he did have a few days were he felt rotten it was doable. When he got home he was very tired for the first month but since then he has seen a marked improvement week by week. When Phil was diagnosed his pp levels were 32, pre transplant there were down to 5 so very similar to your Mom's response. Phil's transplant was December 20th, 2012 and at the last check his pp levels are less than one so we are hoping that they will reach zero so for Phil the SCT was worth it.
If you have any specific Bart's queries please ask but I will say again we have been happy with Phil's treatment there.
Megan
Hi Clare
I'm glad I didn't hesitate having an SCT. I had mine 8 years ago and my PP levels are still undetectable, before my SCT they were 80. I had all my treatments in Derby & Nottingham.
Stan
Hi Clare
I have decided not to have a SCT just yet. I have been in Complete response to CTD for 2 years now – no PPs and light chains in normal range. I do have some stem cells on ice, but I was only able to harvest enough for one transplant.
Good luck to you and your mum whatever happens.
Tracey
Hi Clare
Welcome to the Myeloma club!!,patient,carer or family,I hope you get a good response to all questions.
My husband is 69 this year he had SCT after two courses of chemo,CDT plus Velcade., He only got 6 months remission. After the 100 days,he went to Kings I can assure you these top notch London hospitals,know there job,they do it all the time.
It must be your mums choice ,if things did go wrong and you pushed,you would never forgive yourself .!!!!
I believe it gives people a chance of having a better remission although it did not work for my husband,would he do it again???,at the moment no,but when the prospect of death looms who knows,but I do not believe they would not offer SCT again as age and 6 months remission first time is against it,as next time round it is likely to half.
I hope this informs you but does not upset you.
Let your mum decide herself. Eve.
Thank you…I will definitely start looking for that expert!..x all your advices have been very helpful.. I will show mum all you have said.. and I know she will feel a whole lot better about it all..I guess the first step is having a consultation at Barts, and seeing where that takes us. Interesting Tracy, I didn't know you could store cells for future use, knowledge is definitely power!. X thanks again everybody, and I will let you know mums decision. Xxx
Hallo Clare
I was diagnosed with MM in March 2010 but SCT was not considered appropriate because I was 66 (I live in Holland and the age limit is 65). At first I was concerned about this but now I am glad that things worked out this way. I was given Revlimid. At the end of the chemo (good partial response) the revlimid continued and since then my p-protein has continued to go down at a rate of about .2 per month and is now 2.6. I have no problems from the medication and carry on life as normal. I know that things can change suddenly but that is for another day. Good luck with the decisions that your mother will have to make.
Annette
Hi Clare
I had my SCT at Barts a long time ago in June 2005. The standard of the treatment and accomodation was excellent. The only downside was the traveling time from Colchester. Whether to go for a SCT or not is an individual decission. I definately would go for a 2nd SCT if its needed.
Best wishes
Tony
Hi Clare
my MM journey was diagnosis in Jan 2009 pneumonia' renal failure and MM had CDT which gave me 3 and a half years remission kidneys still only 20% but hanging on started Velcade at the end of last year hoping to get a good remission again this is very much a personal journy I think at your mums age she needs to take her time and take the best advice from her consultant I was 61.5 when i first got ill i didnt go for an SCT as it would have probably destroyed my kidneys didnt want to risk it
Regards Jo
Hi Clare
Don't have any experience of brats but my partner had sct last November 2012. He was very poorly no doubt and it isn't pleasant, but he got through it. He is still recovering and gets very tired however we were scared before hand. We went for it because it was Colin's final decision and I supported him. I wouldn't say it's easy but any option for a longer remission is good.
Read the thread of others, frank, Colin and Megan Jane. It sounds awful but the medical teams are so skilled and knowledgeable they give comfort and security. 🙂
Vicki and Colin x
Hi Clare and Mum
Well know nowt about "Barts" but I went same rout as your Mum looks like she will be traveling Mine was 5 sessions of CTD then round the bend to SCT and that was in December 2009, I am now 57 and sat here in remission and Drug free.
Did I regret it Nope not once, a bit of a struggle but I knew it was going to work.
Love to your Mum and Good Luck in Mum's road to remission.
Tom Onwards and Upwards xxx
Hi Clare,
My first response to your opening post was to say that while the SCT route sounds terrifying, like most things in life the actuality is far better that the imagined… and I hold to that.
Then there is another part of the big question that I did not address… that of whether to actually have the transplant or not. You have had some interesting and informed arguments put before you and I would like to add to them. :-/
Annette and Jo have shown, for different reasons but essentially they did not qualify for a SCT, that the frontline treatments such as CDT can give substantial remissions… 3.5 years in Jo's case and 3 years and counting in Annette's case. But Tracey's case is different again, she chose not to go ahead with her SCT until the first signs of relapse from her CDT treatment… and so far, so good. Which is where I come in. 😉
I looked at all the treatment options, both here and in America and I decided to follow the same path as Tracey. But… my consultant was quite bullish about the SCT route… she was adamant that it was the only way to go and when I pressed for reasons why I should not continue with the CDT until first signs of relapse she changed her tune slightly and started on the financial implications. She said that it was not just a matter of sticking with the CDT but that by not taking the SCT route now, as laid down by NICE, the funding body, I might well be refused funding further down the line. That frightened my wife and although I was still in favour of sticking with CDT seeing my wife in distress, imagining the hospital turning my SCT down due to financial reasons, I gave in and settled for the SCT. :-0
At the time I had had my SCT preparation held up over the Xmas period due to an infection in my Hickman line which needed replacing. So instead of having my SCT in early December, it was postponed until mid-March and by the time it came around I had been in CDT remission for nearly 5 months… and I felt as fit as a fiddle. 😎
I questioned the SCT route in January because I had been following the developments in America where quite a few medics were saying that the SCT route was not the be all and end all of treatments… they were not necessarily saying that SCT's were not efficacious but that there were other treatments that could be considered as being just as good without the mild trauma and long recovery of the SCT. 😐
But it is a choice to consider… try and look at all options while you form your opinion… but also try and ensure that your opinion is an informed opinion based on good medical practice and what might be best for your Mum… without being swayed by the fear factor. :-/
As for me? If I could go back yadda, yadda etc… well I'd go for the CDT route and take my chance that I wouldn't be turned down for funding when the SCT came up. Who knows… I might well have matched Jo or Annette… as it was my SCT relapsed after 10 months.
I wish you and your Mum all the best in your decision making… but I do ask that you consider the fear factor and dismiss it if you can, As I said before it is an unpleasant process but nothing like most people imagine and it might give your Mum a number of good years with a reasonable quality of life. 🙂
All the best
Dai.
A Massive thank you to all your replies.. just being able to hear other peoples experiences is wonderfully comforting..:) Dai. You make an interesting point, and I have looked at some American myeloma sites. However, I'm not sure yet what alternative treatments we have here in the UK. I will absolutely get as much info as possible, to help mum make the best decision for her. I know at the moment she feels like she wants to get all treatment over with and move on with her life. At least now when we have the consultation at St Barts, I will be better I.formed as to what questions to ask. Thanks again everyone…its much appreciated!..:) xx
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