[adminKeymaster]

Hi,

I was diagnosed on Nov 12 last year and am currently on 3 weekly cycles of Velcade Steroids and Thalidomide heading for a stem cell transplant in may/june. I'm male, 52, fit and in good health. I'm fortunate to have a family and a job. I've lived in France since 1990 (though a brit) and am being treated for in France, which might make an interesting contrast with UK patients.

Obviously the most immediate thing to share is the side effects of treatment, but there are other questions like long term developments and post transplant dieseas recurrence, and mortages and life expectancy etc.

I was wondering, given good treatment response, to what extent transplant (aplasia) was really necessary – and how damaging that process was, however I really trust my doctor and we've discuesed it and I will go through the Transplant phase.

All the best

Nigel

[RozParticipant]

Hello Nigel

Hope you don't mind me telling you this, I just feel like I need to for some reason.

My husband got myeloma roughly around 3 yrs ago, he died xmas eve.Don't get put off when you here that. He suffered alot of side effects later in time.
He was a healthy, fit man who worked, then all of a sudden became so ill. He was ill for a year, no-one knew what it was, he couldn't eat, got lots of pains in his back, then he got rushed to hospital because of his blood count and transplants and tests started.
He had all tablet forms of chemo and thalidimide. Thalidimide didn't agree with him so he did well without it. He went from 89% to 4%. Then he had stem cell transplant. He was really poorly with this. He was in solitude for along time. But when he came home we got told it had been a success.
3 months later his myeloma was back, with avengence. He had velcade which gave him many side effects, his body wasn't strong enough to deal with them so he was in and out of hospital. We got told this was working but after 3 months the same thing happened, he got his myeloma back. Then it was revlimide time. He never came out of hospital while he was taking this because all medications gave Michael infection after infection so he was fighting on a tight rope.This was a success for 3 months then it came back like mad.He fought and fought but passed away Christmas Eve.
So it doesn't matter how you respond to treatment, its how and what your body can take with medications and the myeloma. Michael fought and responded well but in the end he died, you could be a lucky one and last for 10yrs. No-one knows so deal with your illness. Myeloma is a disease that every individual responds to differently.

Please look after yourself and I wish you all the best in the future

Luv Roz

[adminKeymaster]

Dear Roz,

That is terrible and you have all my sympathy. It seems he was diagnosed very late and it seems that he was very unfortunate that the cancer did not respond to treatment on a long term basis and that he suffered from extreme side effects.

With my best wishes,

Nigel

[brochoParticipant]

Hi Nigel welcome to our merry little band !! It is the best place on the net for answers regarding myeloma as it is based on individual experiences, however if I have learnt one thing about mm its that it is a toatally individual illness where the variations in symptoms and response to treatments are unique! Being able to share experiences with each other is immensely valuable , especially as life with myeloma is about more than just symptoms and medications As for the benefit of transplants my vote is definitely worth it , the possibility of complete remission is there and failing that any lengthy delay in heavy duty meds is a bonus Good luck Bridget

[JetParticipant]

Hi Nigel

Just a quick response to your post… not that any of us can ever really answer each other's questions…

I was diagnosed on 4 Feb this year and am in treatment – on the Myeloma XI clinical trial, taking Revlimid, Chemo and Dexamethasone and en route to a probable stem cell transplant later this year.

A couple of weeks ago, a friend visited who told me that her partner's mother has MM. She is 71 and received a stem cell transplant, from which she is in remission eight years later. Clearly, I found this very encouraging and I just wanted to share that with you.

Like you, I have a lot of faith in my Haematology team and so far intend to continue with their advice/direction.

Good luck with your decision and your continuing quality of life.

Jet

[tomParticipant]

Hi Nigel

And a warm welcome to our little band.

I was diagnosed Jan 2009, and since then I have had 5 courses of CTD,stem cell harvest and now am at the 15 month post stem cell transplant and am back at work (light duties)

All through my treatment it has been "Pain Free" :-)and am now still in remission 😎

As you know or will find out everyone is different with this bloomin MM, but we have on here members who are still kicking it ass 9 years + on 😀

Would love to follow your treatment and see how it differs from here in the UK.

Good Luck

Tom "Onwards and Upwards" 😉

[DMCParticipant]

Hi Nigel, welcome to the Forum and our great little band of friends.
Yes MM is an individualistic complaint and we do all react differently to it and the treatment. No one can give any definitive answers, we all travel our own roads with it, but we can support and boulster each other as we travel these roads.This is what the forum is about. Information and Knowledge when wanted and shared is powerful. I believe when we are prepared we have no need to fear! Keep logging on Nigel, let us Know your progress.May the Lord bless you with what ever you stand in need of in the times ahead.
Kind Regards
Dave (DMC)

[lorraineyParticipant]

Hi Nigel,
Welcome to a brilliant site, you've come to the right place for help and support. I also live in France, where abouts are you? I live in dept 53 and am under Professeur Lamy at Rennes who is brilliant. I was diagnosed February 2008 with smouldering myeloma but it progressed pretty quickly and I started treatment Velcade/Dex February 2009, had STC June 2009 but didn't get as good a response as we wanted so went on Revlimid of which i'm still on and am in remission 🙂 Good luck with your treatment, Lorraine X

[davidParticipant]

Hi,My hubby was diagnosed with myeloma six years ago. He had a stem cell transplant, with two years remission. He then had thalidomide,with good results and was in remission for almost three years. It has now come back with a vengeance, and he has extensive damage in his bones. He is just starting a programme of revlimid and dex, but although our consultant is looking for a 6-12 month remission period, she is quite bleak about the future. Does anyone have experience of a good response to revlimid after this timescale? We have been told because this is his third relapse, the options are limited. We would like to hear if anyone has a better prognosis. Cheers, Sue

[MinParticipant]

Hi
As I understand it as explained by my husbands consultant. Revlamid is a drug that you stay on if it works on you. It is not a drug you stop per sae simply because it has worked. It is also a maintenance therapy and as long as it is beneficial your husband will remain on it perhaps in lower doses or in company with another medication like velcade. It depends very much on the response to it, it is made by the manufacturers of Thalidomide, and like that drug but with lots of the bad side effects taken out.
I suggest you ring the myeloma infoline to put your mind at rest about it.
Min

[davidParticipant]

Thanks Min. He got on well with thalidomide, so we're hoping for a good response this time round. It just seemed a bleak prospect, the way it was explained. Thanks for your response, Sue

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