[AntarParticipant]

Goodday to you all.
I having been diagnosed with Myeloma and started my first cycle of chemo on Mx1
feel it's time to introduce myself and get to know some of you.
I've only got one current question have any of you had sct at the maxiumum recommended age? I hope to have it later but will be seventy next may at UCH.

regards David

[jmsmythParticipant]

Hi David

Sorry you had to join us here but welcome. My husband, Frank was diagnosed with smouldering myeloma in 2006. He had SCT in March this year and he turned 70 in April. We were surprised that they started CDT and then SCT as Franks Pp levels were dropping on their own for months. Frank thought that they decided to do it as he was turning 70 but our consultant told us that your fitness and general health is taken into consideration when they make the decision.

Hope someone else comes along soon and gives you more info.
Take care
jean

[eveParticipant]

Hi David and Jean

Slim was 67 it is not so much age it's how fit you are!! If you are fit they put you on MX1 intensive pathway,which will lead to SCT,slim had a blip in the middle of treatment and Dex was reduced,but still went on for SCT.hope this is some help.
Hi Jean,nice to see you are making up for lost time and going on holiday. Eve

[andygParticipant]

Hi David
Welcome to the forum. I was 53 when diagnosed and fit I'm now 55 and not so fit but I've not had a SCT not because of age but due to failure to respond to treatments.
SCTs are hard on the body but they do give a you hope of a drug free period. The outcomes of SCT vary wildly with some getting a long remission and others only a short remission. There is a thought that SCTs may not be right for everyone but that's a discussion that is on going especially in America.
There are some on here of the more experienced age who have had SCTs and I'm sure they'll be along to give you the benefit of their experience.

Everyday is a gift
Gratefully received

Andy

[eveParticipant]

Hi David

I would agree with Andy,but hindsight is a wonderful thing,Slim only got 6 months remission after the 100 days,his bloods never picked up,so for him personally it did not work,when he finished Velcade and had SCT after the 100 days his Bone Marrow showed no Myeloma cells complete remission,he never got back to being fit,and slowly went down hill.

Saying all that you should not compare as everyone is different,some people have years of remission,and others do not!!!!

I think the experts are still in the dark why some people respond well and others do not,what I have learned and also his consultant is Slim responds well to treatment,but as soon as treatment stops it comes back,so for him it's just buying time,he will be on Revilimid until it stops working. Eve

[mhnevillParticipant]

Hi David

Welcome from me to. Sorry you havs had to join us!

Iam 69 and have chosen, myself not to have SCT. Be guided by your medical team, but be aware there are other options. My PP levels fell to zero following CDT for six cycles. I have now been drug free for over a year, apart from Zometa infusions for my bones which are very affected by the MM.

Presume MX1 is a Trial. I do hope the combination works well for you. As we all have a different MM journey it would be interesting to know what led to your diagnosis?

All very best wishes.

Mavis

[AntarParticipant]

Thank you for your swift response, much appreciated.I wish you and Frank well.

David

[AntarParticipant]

Hello Eve & thankyou for your reply,
I wish Slim and yourself the power to beat this thing. Good luck.

David

[AntarParticipant]

Hello Mavis

Thankyou, I have had ongoing problems ince a stroke(tia) 5 years ago, chest cramps, unable to walk far, breathless, pneumonia etc but the Gp became more confused than I So I requested to see a Haematologist who was very thorough told me it should have been found ages ago,and the rest is ongoing.

Best Regards
David

[AntarParticipant]

I agree wholeheartedly Andy Life is a gift, to be grabbed with every grateful sinew.

Regards
David

[VickiParticipant]

Hi David

My partner Colin was 55 when diagnosed and had 7 cycles of rcd then a transplant in October 2012. He is on the med but gets very tired still. We were told they wouldn't do sct for over 70s but as the others have said it must partly depend on individual cases and their fitness. As jean said her frank was nearly 70 and he's done it!

Welcome and grit your teeth and go for it. Best of luck 🙂

Vicki and Colin x

[AntarParticipant]

Hi Vicki & Colin

Thankyou Vicki,gritting those teeth hard Mr Myeloma has a fight on his hands, I wish you both well.

Regards
David

[MothasParticipant]

David, I can't help on the age side of things as I'm only 47 but I've just had an SCT at UCLH and you are in the best of care. Perhaps I'll bump into you at clinic some time.

tom

[AntarParticipant]

Thanks Tom

The general feeling among the medical team seem to be that at the latter ages
ie: 65-70 the benifits may be out weighed be the treatment and long recovery period.But I will see what Dr Kwee Yong has to say later, I feel basically fit beneath all these aches and pains.
So yeah may see you there.

Regards
david

[eveParticipant]

Hi David

I would do a lot of research before making a decision to have a SCT. It is not just about fitness,it's about what type of myeloma you have plus is it aggressive ,some are harder to contain than others,for example Slim has bence jones Kappa light chains,IGg.although not rare as some kappa light chains are the problem,he has added complications that the consultant tells me I should not worry about!!!,He did not recommend SCT,but said go and see the experts,who thought the process was not a problem for him.
It came back six months after the 100 days completion !!!in theory it means no more remission,as you usually get half the time again,his immune system is poor as he has had CDT then CDV 12 cycles !!! Then SCT no treatment for 6 months now on CDR and if that works will have maintinance until it stops working,in the mean time CDR is ravaging his body.
This is a man who was a marine for 22 years,never ill,never cost the national health a penny,never had a prescription until he was over 60!! Then it was statins to keep the doctor happy,biggest mistake he made,as we blamed them for making him feel sick!!! We now believe Myeloma started around then,but was never picked up,.

So David you have to ask yourself ,should you take a chance,with no promises!!! Or try to hold the disease at bay with maintenance !!! If only we had a crystal ball!!!.Eve

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