[Anonymous]

Morning everyone
Just a question really…….

On my last visit to my consultant to discuss my forthcoming SCT, the consultant said he was really pleased with the progress I have made and the date for my SCT will be 4th Nov.

He did explained the process of the SCT, and the fact that this would give me the best chance of establishing a more complete and durable myeloma control in the future. He also said that this treatment "should" last for 12-18 months, but in some cases could be longer.
My understanding was that once having the SCT, it was just a case of waiting for the myeloma to return, and this could have been anything from 1-4 years. So the 12-18 months was a bit of a shocker. Did I get his completely wrong????? Is the time frame 12-18 months standard.
Ann
xx:-S

[meganjaneParticipant]

Hi Ann,

My husband Phil has never really been given any sort of time frame for anything relating to his Myeloma but 12 to 18 months is often the time frame used to discuss recovery from the SCT. It is a major procedure and although everyone is different it is not something where you feel 100% a week later. Do you think this may be what he was referring to, recovery time instead of remission time? As with everything MM related there are never any definite answers.

My husband Phil had his SCT in December 2012 and he has recovered well, is in remission and feeling good.

Best wishes for a smooth transplant in November.

Megan

[Anonymous]

Hi Megan
Thanks for the reply.
The consultant said my recovery time was 3-4 months after the SCT, so it will more than likely Feb/March before I am better. But as we all know everyone is different..
I did repeat the 12-18 months with the consultant and he yes, this is more than likely when it will return, but he has had some people that have lasted longer.
I am so confused..
Ann
x

[meganjaneParticipant]

Hi Ann,

That is very confusing, you may want to call Ellen on the Myeloma Infoline to see if she can help at all? It may be a statistic that he is quoting but as we know the average numbers don't apply to individuals.

I suppose the main thing is to not focus on a hypothetical time frame and to just take one day at a time, get through the SCT, get yourself well again and then get on with enjoying life 🙂

Megan

[LizMaywoodParticipant]

Hi Anne

I was told the SCT could add 12-18 months beyond what I might expect if I didn't have the SCT. Hope that helps,

Cheer, Liz

[Anonymous]

Hi Megan
You could very well be right about the statistic, but it was the way in which it was put over, that made me think does he know something I don't. Ha! I was a little upset the day he said it, ( well for a few hours anyway.) lol

I know that it could return within that time frame it was just hearing it, a little bit of a shock.
It was more of a question really, and I know we have to take one day at time. In any case I am so going to prove him wrong, 12-18 months, 😛 BRING IT ON………
Ann
X

[Anonymous]

Hi Liz
Thanks for your reply. It does seem strange, I will have to ask him again in Nov
Ann
X

[tomParticipant]

Morning Ann

Dont think too much about the time limite as i am comming up to my forth year since SCT had it 2009 (dec) and it looks and feels darn good.
Get SCT over with and go for the long haul (I did)

Tom Onwards and Upwards x

[Anonymous]

Hi Tom
Thanks for your words, that is what I intend to do…12-18 months, no way, I am going for years rather than months. ha!
I have noticed your nearly four years, well done, hope there are many, many more.

I am in Bournemouth for a few days chilling out. As I went past a building site I saw a sign " ONWARDS AND UPWARDS SCAFFOLDING" your company by any chance? Ha!
Ann
x

[eveParticipant]

Hi Ann

No doctor can predict when it will come back ,average is 18 months upwards,some people are still going years and years later,when we came out of clinic after BMB plus 100 days with 0.0 myeloma cells in Bone marrow,we were told to look at 7 years,plus ,did I believe her,the answers no,read enough about the disease ,and you will have your own answer.

For the record Slim is one of the unfortunate ones,it came back within 6 months,everyone is different!!!!

It's a strange place to be after SCT,there is nothing to fight!!! You are in remission,go out and enjoy every day,why worry about tomorrow and spoil today,or as Andy says every day is a gift. Enjoy Eve

[Anonymous]

Hi Eve
Thanks for the reply. I have never given a thought about the strange place after SCT, but as many of you say…..one day at a time, and I'm making the most of it.
Your are correct "worrying about tomorrow will spoil today"
Ann
X

[LizcParticipant]

Hi
I was given exactly the same time frame 12-18 months before the myeloma was likely to return after sct. I too was very shocked and did consider not actually having the sct because it seemed a lot to go through as well as the recovery time and then to have only 12 -18 months. However I did go for it and had it in Feb 2012. It did not take me very long at all to fully recover although I know everyone is different. I achieved complete remission a few months later and have been drug free since. 20 months and counting.
Good luck and hope you achieve a positive outcome, it is worth it just to be drug free.
Regards
Liz

[PhilipandfionaParticipant]

Hi

I echo what's been said. Nobody can predict. We hoped for longer but got only 12 months, but in the hospital we met someone who was in for his second SCT after 16 years. Even with only 12 months I think we'd do it again if we get the chance and in the meantime we had a wonderful drug free summer.

[tomParticipant]

Hi Ann

Nope the Onwards and Upwards scaffolding company aint mine as i dont do heights Lol.
Yes coming up to the end of my fourth year (Dec) just might throw some Vodka at my Cells and have a wee party he he.

Stay well

Tom Onwards and Upwards xx

[Anonymous]

Hi Liz
Not sure why they say 12-18 months do you? it is like the clock is ticking…..
So glad to hear you have reached 20 months and drug free, well done.
Do you work? If so, have you gone back yet? I have told my employes that I shall be away from work for about 4-5 months as this is what I was told. Hopefully I will be back before then, as I am not a stay at home person.
Ann
X

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