[StanstanParticipant]

Hi I am Charlie

I have just been diagnosed with Myeloma. It is such a shock. I have been asked to go to Southampton Hospital to take the Myeloma XI Trials. I am just reading the information – it is all so confusing. RCD's CTD.s VCD.s or to stay on the standard treatment. Any information on these trials would be helpful. I live on the Isle of Wight and it is expensive going across to Southampton.

Any help will be greatly appreciated.

Charlie

[eveParticipant]

Hi Charlie

Welcome to the site,Its my husband who has MM.

Yes it is very confusing to begin with,but you soon get use to all the information,you have got books on Myeloma my advice is read a bit at a time,it will become the norm soon.

Lets start with transport,you can get financial help,also you do not say your age,but you will be entitled to attendance Allowance and a Blue Badge,you wife might be entitled to carers allowance that is means tested.So try not to worry about the financial side,your life is more important.

You have to decide yourself if you want to go on the trials,speak to your doctor,I think everyone on here will tell you,it gives you more options when it comes down to future treatments.
MX1 trials you are picked by a computer to have CDT or RCD.
Depending how you respond,
you could go straight to Stem cell transplant
you could need Velcade to reach a position of remission,then SCT.
This is what the trials offer.
They will tell you Myeloma is an individual disease and people react different to different treatment,also the outcome again is not the same for everyone,
But it does give you a better chance.:-)

I can only tell you my husband had CDT 6 cycles after he had a BMB the results,confirmed he needed Velcade,if he had not had another BMB for the trials,they would have thought he was in remission after CDT. As for him a BMB is the only way to tell how this disease is effecting his body,but I must stress he is a bit unusual.

Most people have treatment sail through,have SCT and have a longer remission,I believe there is a Myeloma Group based it Southampton and a few of them have been going for 12 years,might be worth talking to some of their members.I am sure Southampton Hospital or if you look on this site or get in touch with Ellen she can let you know who to get in touch with.
I hope this is some help.Eve

[StanstanParticipant]

Thanks so much Eve

I think it is all so confusing and such a shock that you can't take anything in and when you read all the side affects from the drugs on the trials, in order to make the decision, it becomes so depressing. I was healthy a few weeks ago. I think we just have to come to terms with the shock – it is so live changing.

I shall read it all through again. Thanks goodness for this site.

Best wishes
Charlie 🙁

[StanstanParticipant]

Sorry Eve

I forget to say – I am 64.

Thanks Charlie

[BADGERParticipant]

Hello Charlie

welcome so sorry you have had to join but you will find such help and support here I would not have got through many times without it I cannot tell you about treatments except CDT many are not open to me as MM caused me to have real failure it has worked quite well for me as a stem cell transplant is not an option for me. I have just got back from the I.O.W so I think it will be a bit difficult for you if finances are tight you may be able to have help from McMillian good luck
Regards Jo x

[ElizellenParticipant]

Hello Charlie, welcome to the club none of us applied for membership in!

I was diagnosed in March 2010 and am now 62 years.

I was not offered a trials placement after diagnosis but put straight onto several cycles of CDT then a stem cell transplant within 6 months and have been in complete remission ever since.
However if I had been I think I would have gone for it, as I feel it would probably mean being more closely monitored and maybe given more options.

We have quite a few members here on the various trials who seem to feel it was definitely worth it.

As for the travelling, I see that might be a problem having to come over to the mainland, but from what I have heard, there are quite a few kinds of help available if you ask for it. MacMillan has advisors who can guide you through the hoops if you need to claim whatever benefits you are entitled to.

Wishing you all the best on your myeloma journey.

Love
Eliz (in Bournemouth)
XX
X

[StanstanParticipant]

Hi Jo & Liz

Thanks so much, reading these answers makes me feel a little more positive. I suppose there is a period of shock everyone has to go through. I feel so fit. I have been gardening today. Noone has said what sort of excersise you can and can't do, just don't lift heavy weights or overdo it. Does anyone run with Myeloma? I used to run and was hoping to get back into it. I guess that is out of the question now.
Maybe I will feel better when I get more used to the idea. You all seem so positive.

Thanks so much.
Charlie>:-(

[tomParticipant]

Hi Charlie

A warm welcome this site is now yours so use it when you want 😀

I know nothing of the trials I was Diagnosed in Jn 09 had 5 Sessions of CDT then straifgt into SCT and now am pleased to tell you I am still in remission 😎

Good Luck in your Road to Remission.

Great Photo BTW 😉

Tom "Onwards and Upwards" x

[VickiParticipant]

Hi Charlie,

My partner colinn was diagnosed with mm, age 55, a complete bolt out of the blue shock. He was given the option of myeloma X1 trial. We don't know what the treatment would be like outside of the trial because we elected for the trial. On it we have found it to be hard but the treatment and support received second to none. He got the revlimid,cyclophosmhide and dexamethasone. He had that for 7 cycles to complete remission, following now is a stem cell harvest (1st one today but not enough to go), then a SCT.

I cant say it has been easy, it hasn't but if it gives Colin the chance of a long remission and good quality of life then that's good enough for me. There will be sone ups and downs, however on balance it's your choice about the trial but I would go for it!

Good luck

Vicki and Colin x

[HelenParticipant]

Hi Charlie
Welcome! I'm on the myeloma xi trial, I started it nearly 18 months ago, on the revlimid, cyclophosphamide and dexamethasone arm, I was 56 when diagnosed. I had 4 cycles of the induction chemo, then went into complete remission, had SCT and then was randomised to receive the Revlimid as maintenance therapy. I'm on my 9th cycle now. I am still in complete remission, I feel ok ish most of the time, better than the 2 years before diagnosis, when I was not very well at all.
Good luck with your decision making, whichever pathway you chose. As Vicki says you only can make the decision and you can't ever know what the other pathway would have been like.
Love Helen

[StanstanParticipant]

Hi Tom

Glad you are fine now, thanks for giving me hope.

Best Wishes

Charlie

[StanstanParticipant]

Thanks Vicki & Colin

I shall have to take a deep breath and get on with it. How ill was Colin through the treatment? Could he lead a normal life or did he feel so ill all the time?

Just trying to prepare myself.

Thanks so musch for your help.
Charlie

[StanstanParticipant]

Thanks Helen.

At the moment, just wish I didn't have it. Spent yesterday in the hospital, another bone marrow biopsy & X-Rays. I have to decide by Tuesday, I suppose I shall go ahead with the trials. Just not looking forward to feeling ill all the time. I take it you cannot go away on holiday while you are on the trials.

It is just confusing at the moment.

Best wishes.
Charlie

[DaiCroParticipant]

Hi Charlie,

Welcome to the forum but I wish you were not here.

This is a confusing time… and frightening, with no option but to climb on board the treatment wagon and move forward to a better place.:-)

Yes, there is a better place but you have to be treated to get there. This is an excellent forum with people way ahead of you, just in front of you and regretfully just behind you too.:-|

We are always here to answer queries, offer experiential advice and sometimes… well, quite often actually, offer an ear when you just want to rant or rave. We have all been there and it can be quite cathartic and therapeutic.8-)

Regards

Dai.

[PerkymiteParticipant]

Hi Charlie, I have only just picked up on this thread, I drop in and read the post nowadays but I am so busy I never seem to have time to settle down and reply:-) However something Eve said made me think I should comment.

[i]Lets start with transport,you can get financial help,also you do not say your age,but [b]you will be entitled to attendance Allowance (AA) [/b]and a Blue Badge,you wife might be entitled to carers allowance that is means tested.So try not to worry about the financial side,your life is more important[/i].

You are not [u]entitled to AA [/u]just because you have Myeloma, Indeed many Myeloma suferers do not get AA. Provided you fulfil the criteria set out in a long and detailed form you might get it. If you are applying I would suggest you seek help from a MacMillan nurse in filling in the form.

Best of luck

Kindest regards ? vasbyte

David

I just thought I had better clarify that before everybody starts wondering why they are not getting it.

[Author]

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