[joeParticipant]

I was diagnosed with Myeloma on 21st November last year and started the CTD the following day.

I’m now about to start my 5th cycle and I’ve been for the preliminary advice to consider both the autologous and the donor transplant and, as I have no siblings, I’ve decided for the autologous.

The whole thing came as a huge shock for me but I have the support of a great wife and after having a few weeks off work and some counselling I’m back working full time while I wait to have the SCT.

I just wanted to say Hi and to say that reading the posts fron SCT recipients on the forums has helped me enormously with coping with what is to come.

[Anonymous]

Hi Joe, welcome to the site. I’m sorry you had to join, but you will get some great advise here along with lots of encouragement as your treatment begins.
My husband is the one with multiple myeloma, and the date you were diagnosed was the day he came home from having his SCT 😉 so I just wanted to say hi to you and welcome to the site !

[joeParticipant]

Thank you Pauline

I see you posted about a month ago about your husbands progress following the SCT.

I wonder how is he doing now and how things are improving for him?

[CarolsymonsParticipant]

Hi Joe
I am just 22 days post transplant and while it is not a pleasant process and I am still fighting the side effects (fatigue, nausea and vomiting) from the melphalan (high dose chemo) it hopefully will be worth the week or so of suffering for a long remission. But, like everything else with this unpredictable disease, even the SCT is a gamble.

Carol

[Anonymous]

Hi, he’s doing really well now , but like most people who’ve gone through SCT he suffered from the dreaded sickness and diahorrea whilst in hospital. But what I found out from other wives who were visiting was that SCT affects everyone differently….some had severe sickness whilst a couple only had mild sickness etc. Just remember that no matter how it affects you, you will start to feel better when your neuts start to climb, and you will get stronger every day. Just listen to your body.. lots of rest, water, mouth wash, hand gel ok? Lol. The tiredness will still be there when you come home so rest when you need to. Marc’s appetite and taste buds are still not back to normal, some foods he used to love he can’t stand anymore! And some make him physically sick.

It takes a while Joe but you will get through it , and it’s really worth it!!

[joeParticipant]

Hi Carol and thanks for posting.

I hope the side effects don’t last much longer for you and the gamble pays off  for both of us!

 

[joeParticipant]

Thanks for the tips Carol, I’m not looking forward to the SCT but it seems that I have not got much of a choice, so I’m really grateful for anything that will help me get through it!

[Anonymous]

Hi Joe
Welcome to the site, you will find lots of help and some great people on here. I don’t post very often, but after reading your post I thought I would say Hi. Please don’t be scared about the SCT everyone is different and have different experiences. I had my SCT on 4th Nov and I can honestly say mine was not too bad! Yes I did get the sickness, but it was manageable.
Good luck with all you treatment, hope all goes well for you
Ann
xx

[joeParticipant]

Hi Ann and thank you for the welcome 🙂

It is good to hear the positive stories about the SCT because the information I got in the initial consultation made me so scared about it that I was all for having nothing done at all and just letting the MM take it’s course.

Both consultants said it was the bests thing to do but, for me, to go through all of that for what they estimated was likely to be 2 to 3 years benefit seemed not worthwhile.

As I said though I ham having counselling, got the support of my wife and I’m feeling more positive most of the time!

 

[MicheleParticipant]

Hi Joe

Just thought I’d say hello and welcome.
If you’ve read my latest post in the General section you’ll know that I had my SCT 2 years ago and I don’t regret it at all.
I was only 49 at the time and apart from the MM, very healthy, so that obviously helped recovery a lot. I’ve had a wonderful 2 years and have packed an awful lot in. Lots of plans for this year too.
It’s important to realize that an MM diagnosis isn’t the end of the world even though it seems that way at the start and that there are many good quality years ahead.
We’ll be with you all the way. Anything you want to know, just ask!
By the way, where are you being treated? I’m in Poole, Dorset where the Dorset Cancer Centre is second to none.
Michele

[CarolsymonsParticipant]

Hi Jo
Don’t listen to the horror stories -according to my experience, it is not that bad. I have met a 10 year survivor (a super fit 69 year old cyclist) over at Ealing Hospital, who managed 8 years drug free from his first transplant. Now just imagine that! But….like any treatment with this disease it is so individual and the 2 to 3 years is average…..but I have never been average – I am an A* kind of girl, so I am aiming for the 8 years! Yes I may be disappointed, but if you can’t go into the transplant truly believing it will work, then I would say don’t do it. Remember my life philosophy…”A life lived in fear is a life half lived.” Yes it is a gamble but…..imagine 8 years in remission………with NO DRUGS………

Carol

[duskParticipant]

Hello there Joe

I am impressed by the speed at which treatment was commenced for you.  How was MM discovered for you? Were you given a whole battery of tests e.g. BMB/ cytogenetics  before the diagnosis was confirmed?

It is a very personal decision as the route to go. As you will note from the forum contributors  each will have their own ways of assessing what path to take- with the help of information from their consultant. There are emerging views about the way MM treatments may go in time, but CDT and stem cell transplant for those deemed fit enough and young enough is still the main  English NHS route for longer remission when successful-  as many on this forum will attest.

It is always worth asking questions until you feel confident in the choice you will make.  It is possible to defer the auto transplant depending on whether your consultant thinks the response to CTD allows this. As others have stated here once you make a decision go with it fully as that is the best you can do for yourself.

Good luck.

 

 

[joeParticipant]

Hi Michele and thank you for the welcome 🙂

I was 49 when I got the diagnosis too but I was 50 this week, which was good because every day is a bonus, but bad I guess as I am now disqualified from the under 50’s forum!

It really did feel like the end for me when I found out but I’m having more and more days when I can cope with it. To be honest going back to work has set me back psychologically but I had no real choice as I don’t get sick pay and I’m going to probably need lots of time off after the SCT.

I think being able to make plans and set goals will be a real help, at the moment I’m too uncertain of the future to be able to do that but I’m hoping that once I know how the SCT helps I’ll be able to do that too.

I’m being treated in Doncaster and Sheffield and I have to say the support from staff is amazing.

Thanks again

[joeParticipant]

Thanks Carol

I will try to keep my eye on the prize and be as positive as I can, I manage it most of the time, I think today is just being a bit of a hard one for me.

I’m encouraged by your experience and I’m definitely going to give it a go!

[joeParticipant]

Hi Dusk

It was just a blood test really.

I’d been feeling weak and tired for a couple of months and just thought it was probably viral so I did nothing. I got to the point where I couldn’t do anything but sleep once I got back from work and I couldn’t walk without feeling like I was going to collapse though and I finally decided I should see my GP who sent me for a blood test

Two days later he rang me at work and told me to go  to hospital right away and they told me there and then I had Myeloma although I did find it very hard to take in.

They did the bonemarrow  biopsy thing the next day but started CTD anyway as the result wouldn’t be back for a few days from Sheffield and they didn’t want to wait for it as they were sure already what it was.

I’d also suffered kidney damage and bone lesions and so as soon as the kidney function was back I started on the Zometa too.

I have decided to go with the SCT though, and both consultants think I ought to do it as soon as I can so I’m taking their advice and hoping for the best!

[Author]

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