[AmelieParticipant]

John is having his 2nd sct in mid july. Only 23 months after the first. I am SO disappointed that it didn't last longer, I really expected that he would have several years since his life quality has been very good, he has been able to work full time and do everything he wanted.

Prior to the sct he will be treated with thalidomide. I am wondering why they have chosen that and not revlimid? Could anyone tell me what thalidomide can do which revlimid can't?

One more question, I have read that instead of ice there is something else you can have in the mouth while you are given the high dosis melphalan. It is a kind of thing which is cold and fits to the shape of the mouth. If anyone could help me with a more precise description or maybe even show me a photo, I would be most grateful. The ice procedure was the most traumatic experience for John, and I would do everything to find another solution.

Thanks in advance,
Love Amelie

[brochoParticipant]

Hi Amelie sorry to hear John didnt get a longer remission but quite a few people have said they found their second sct easier than the first one so try not to worry too much . I dont know why Thalidomide was chosen its something that his doctors would be able to tell you. I think you may be thinking of ice pops to suck whilst he is having his melphalan these are flavoured ice sticks and taste a bit nicer than plain ice Good luck to John hope he gets a long remission this time love Bridget x

[tomParticipant]

Hi Amelie

Sorry to read that his SCT only lasted for a short time, and hope that his 2nd one gives him far far longer, please give him my regards

Tom "Onwards and Upwards" xx

[AmelieParticipant]

Thanks for your encouraging message – good to hear it can be easier 2nd time.

As far as I remember the cold "thing" I heard of wasn't eatable, I will try to surch.

The problem is that the doctor says very little, and John is certainly not good in asking questions, that is why we always know so little. 🙁

Love
Amelie

[AmelieParticipant]

Thank you Tom, is there any chance for that? I thought 2nd sct would always last shorter than the first one 🙁
I know some people have absolutely no result of their sct, and compared to those we have been extremely lucky. The almost 2 years after the first sct has been absolutely wonderful. Just hoped for a bit more.
Thanks again,
Amelie

[AmelieParticipant]

What happened to this thread? Suddenly I couldn't see it in the Gerenal forum. :-0

[tomParticipant]

Hi Amelie

There is alays a chance for a long remission with the 2 SCT yes I know that some dont last that long but we all differ in the way that the treatment works, I honestley cant answer the reason why some work and some dont :-S Lord I wish I could.

Please take care and I wish with all my heart that John has a long and trouble free 2nd transplant.

Love and Hugs Tom xxxx

[AmelieParticipant]

Thanks a lot.

Does anyone have some good links to info on 2nd sct?

[KeithH17Participant]

Hello Amelie,I had my 2nd SCT last August after 8,cycles of Velcade+Dex.
I managed 2yrs 4mths from my first SCT in May 2008.
I also found sucking the ice-cubes quite sickening,in fact I have avoided ice lollies ever since LOL.
I have not heard of anything you can keep inside your mouth to help it stay cold but there is a spray you can use 30mins before you receive the Melphalan but it's not available in the UK due to it not been licenced.
Although I remember someone on this site saying that they were given it in France and it worked well I was also told by a doctor after enquiring about it that ice-cubes are still the most effective method of protecting the mouth,so it looks like John may just have to put up with it one more time same as I had to.
On the point of remission times I've heard of people getting longer 2nd time and others getting less,we just don't really know.
Just take it as it comes and hope for the best is my advice and I hope the procedure goes smoothly for both of you.

Take care.

Keith.

[AmelieParticipant]

Thanks a lot Keith, it is SO good to know that there IS a chance for a longer second remission. It means a lot to have a hope!

When they collected John's stem cells they got enough for 3 transplants. Has anyone heard of someone who got 3 transplants? I am just wondering because obviously I start to think about what they will do when he relapses next time.

Love
Amelie

[DaiCroParticipant]

Hi Amelie,

I am glad that John is going to receive his 2nd SCT. They will use Velcade because it has a good chance of getting him to the right level but its effects last far less than Revlimid, which is a long term therapy (rather than a short term knock back). Revlimid will more than likely be John's next treatment… but the good news is that by that time Carfilzomib could well be licensed in Europe and that knocks back while allowing Rev & Dex to maintain…. so good news for anyone who can hang on in there for a couple of years or so.

It is highly unlikely that John will receive a 3rd SCT… but who knows… there are quite a few of us here who only harvested enough for 1 SCT and the medics don't seem to be considering donor cells as an option for people over a certain age (ie late 50's +).

I wish John well… let him get through his Velcade (which is now done subcutaneously – much easier with far less side-effects) – and then his SCT… and leave what come next until much later. 🙂

Dai.

[KeithH17Participant]

Hi Amelie,I was at the recent Info-Day in Newcastle when the question of a possible 3rd Transplant was asked.
Prof Jackson said that it would be most unlikely that the procedure would be carried out a third time and said that even 2nd transplants were quite rare.
The main criteria are age/fitness of patient, having enough stem cells in reserve and remission achieved from previous SCT.
I'm no expert but giving there are enough stem cells to do 3 transplants if John fits the other 2 criteria then why not a third SCT?
I got enough for 2 and as it's very difficult to extract stem-cells after high dose Chemotherapy then that's it for me.
With medicine generally and Myeloma in particular opinions vary between the experts but the general concensus seems to be a maximum of 2 transplants.
Hope everything goes well and John achieves a very long remission.

Keith.

[AmelieParticipant]

Thank you Keith and Dai for the replies.

I just wonder why they would collect for 3 sct if they would never give the 3rd one…

The doctor won't give him Velcade again since he got it as preparation to the first sct. This time it will be thalidomide, we are a bit nervous how it would be. Did any of you have thalidomide?

Thanks a lot for the good wishes, and all the same to you!
Amelie

[DaiCroParticipant]

Hi Amelie,

They don't collect stem cells for a specific number of transplants… 2 is usually the maximum and that is determined by how may cells get harvested.

They usually hope for approx. 5 million = 2.5 per transplant. I, for instance struggled over 5 days on the harvesting machines, including two late night dashes back into the hospital for very expensive pleraxifor injections to help the cells off the walls of the bone… we managed 2.i million in total.. the professor said he would have gone ahead with 1.8 m at a push. I know some people have harvested 10 million cells over a couple of days and I believe that they will put as many as they can back during the 2nd STC.:-)

Thalidomide is something of a wonder drug… frontline or maintenance… despite the bad press during the late 60's early 70's when it was given to pregnant women and caused many problems with defective births. It will be used to maintain John's pp's.. hopefully getting them to zero or at least a steady and acceptable plateau before starting his 2nd SCT. I had it as part of my frontline treatment CDT and it worked well for me then.8-)

Let's hope thalidomide works quickly and John gets his transplant date fixed real soon.:-)

Regards

dai.

[mhnevillParticipant]

Hi Amelie

Sorry John's remission didn't last longer, but those two good years must have set him up well for the next SCT. Here's to a very long second remission. Do keep in touch.

Love to you both.

Mavis x

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