[Nanna59Participant]

Hello
This is my third attempt at putting on a message but I seem to be doing something wrong so here's hoping
I'm 59 years old and was diagnosed with MM in February which came as a massive shock as I had recently taken early retirement and was just begenning to do all the things that working full time woud not allow
I have just finished my 4th lot of CDT and my consultant at Pontefract General Infirmary has decided that I am ready for Stem Cell Transplant
I have to admit that coming home from the hospital armed with leaflets and an overload of information I was terrified
Any words of encouragement from you lovely people on here would be very welcome 🙂
Kind regards
Christine

[CarolsymonsParticipant]

Christine I am also newly diagnosed on week 5 of CDT. How great that you are ready for SCT after 4 cycles of CDT…I hope that happens for me. Like you I am in 2 minds about SCT. As I am 63 I am thinking to go or it rather than wait, but I think if I were younger I may have decided to delay it. Thing is all I want is to be drug free and it seems that having the SCT is the only way to achieve that goal. However first cycle saw no change in my lamda light chain readings so not sure if I am even responding to CDT.

Carol

[dickbParticipant]

Hi there, welcome to the exclusive club that no one wants to join. You've done well to be ready for stemcell treatment, I was also diagnosed in February but am months away from SCT. Take it. As was explained to me, those who have SCT have a longer life expectency. MM will always come back but it gives you longer to enjoy your retirement.

[Nanna59Participant]

Hi Carol
Thankyou for yur reply
My consultant hasn't mentioned Lambda Light Chains to me – We mainly talked about my PP level
It's all very daunting but like you I just want to be drug free
63 is still young. I'm 59 so no spring chicken but I figure whatever needs to be done to beat this has to be worth a try eh?!
I hope you are ready for SCT soon too
Keep me posted and let me know how you get on
Kind regards
Christine

[Nanna59Participant]

Hi Dick
Thanks for the warm welcome
Yep the CDT was pretty horrible but I will take the SCT
I was told I was quite young to get MM but looking on here I was very shocked at how many people had it who were much younger than me
It's been very encouraging reading everyones stories
I wish I had logged in sooner!
Kind regards
Christine

[tomParticipant]

Hi Christine
A warm welcome to the group, and you ask for words of encouragement ? Well am pleased to tell you I and everyone on here can and will do it 😉 .

As for me I went through the CDT then SCT in 2009 and I sit here Drug free and in remission ????. I also will tell you the truth and to be fair the treatment is an uphill struggle at times but its a doable, am pleased to add.

Good luck in your road to remission.

Love
Tom Onwards and Upwards xx

[suewiParticipant]

Hi Carol, I was diagnosed November 2012, aged 64 had 5 months of CDT, but felt so ill all the time, I decided not to go ahead with SCT it does bother me but I felt I just couldn't go through all that again, I have never ever felt so ill, I know everyone is different. Finished my treatment In April and a at the moment I feel great, so I am going to leave well alone. Hope your treatment goes well and good luck
Susan

[DaiCroParticipant]

Hi Christine,

As you are finding out this forum hosts people from all backgrounds and all ages… the youngest being about 32 and the eldest about 83. You will also find a wide range of experiences with MM on board too… with some people, like Carol, just barely ahead of you and people like me who has run out of metal roads and is trusting to dirt tracks and invention. 🙂

We are all here for similar purposes, to support and be supported… to help and be helped… to offer cyber hands and to receive the same back… with friendship, camaraderie and our own kind of love. 😎

For love it most certainly is. 😀

Welcome. 😎

Dai.

[LizcParticipant]

Hi Christine
So sorry to hear of your diagnosis and when it comes out of the blue it is such a shock. I too was just about to wind down and retire,I was diagnosed at 58. It had affected my kidneys and they failed which was how I was diagnosed. I also had to have a tumour removed from my neck and now have metal plates in my spice with 9 fractured vertebra but after 6 treatments of cdt I had my stem cell 18 months ago and I am still in remission and drug free and enjoying life. The decision was hard to make but I decided to go for it , it was hard going as I ended up in intensive care,but definitely worth it. To be drug free and be able to enjoy life again makes it worth while.You have obviously had a good response already with treatment so the stem cell will be a very good back up to keep it going.Good luck with everything and just remember although sometimes things may seem bleak you will feel better and enjoy life again especially when you are drug free.
Best wishes
LizC

[VickiParticipant]

Hi there

Welcome to the forum….a funny old club. My partner Colin was distanced in 2011 (October) and had 7 cycles of cyclophos, revlimid and dexamethasone. It was a real struggle but he had an sct in October 2012 after a couple of failed attempts at getting the stem cells out. He has now got to a point where last week he worked 5 very full days….after going back to work end of February 2013.

You can do it. It seems like a long long road, and ok for me to say but with the support of a good family you will get ther 🙂

Vicki and Colin x

[Nanna59Participant]

Hi Liz

Thankyou so much for taking the time to reply
It's great to hear everyones individual stories and it's very encouraging hearing from people who have already gone through what I am about to go through
You certainly sound like you have been through a tough time and I am so happy for you that you are in remission and things are sounding so much better now

Kind regards
Christine

[Nanna59Participant]

Hello Dai

Thankyou very much for your warm welcome
It's so comforting to know that there is so much support out there
It is really appreciated

Kind regards
Christine

[Nanna59Participant]

Hi Vicki and Colin

Thankyou for your reply

What great news about Colin

Thankfully I do have great support at home and I do think that sometimes it's harder for them than it is for me 🙁

Yes, it does seem like a long road ahead but hey, it could be a lot worse!:-)

I will keep you posted on my progress!

Kind regards
Christine x

[tonyfParticipant]

Hello Christine, can I add my welcome, along with everyone else. I think we are quite an exclusive bunch, all of us have gone through different treatments and can offer support, help and advice on most things related to myeloma.
For my part I was diagnosed in March 2012, I went through the drug treatment for 5 months, had a break for a few months, at my request, our daughter was married in October and I wanted to be drug free etc for her wedding. In January 2013 I had a stem cell harvest followed almost immediately with the transplant, it was tough going at times but now 5 months later I am drug free, no treatment, except a monthly penidronate infusion and daily adcal tablets. Had to have all my baby jabs again. Last thing the consultant said to me was to go out and enjoy life!
Don't be terrified, it is daunting, but very doable?
Good luck
Kind regards
Tony F

[mhnevillParticipant]

Hi Christine

Welcome from me too. I was diagnosed at 65 started CDT about 15 months later and have been in complete remission for nearly a year. For lots of reasons I have not gone down the SCT route, but I do wish you well with yours. May it lead to a long remission.

Love

Mavis x

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