[JimParticipant]

Hi everyone,

I?m new to the forum having being diagnosed with Myeloma on 13/10/2011. I?m a 40 year old who is physically active and eats a reasonably healthy diet. It was a complete shock to me, my family and friends when I was diagnosed and I?m still dealing with it at present.

Like everyone else I?ve had a huge amount of information to take in within a short time. My query is regarding people?s experience of the Myeloma XI trial. I?m particularly interested in people?s opinions that?ve been on the trial and if they?re happy with the treatment they?ve received thus far. My treatment would be at The Christie in Manchester.

Thanks,

Jim.

[wendyduffieldParticipant]

Hi Jim

sorry that you had to join the group but hopefully you will find the forum very helpful. I know I have. I was diagnosed last December when 49 and was previously fit and healthy and it was a complete shock to me and I am still coming to terms with it.

I see you are going to be treated by Christies so you must live in Manchester like me. I am being treated at the MRI. I was offered the myeloma xi trial on diagnosis and decided fairly quickly that I wanted to take part. I thought there would be better monitoring and the chance to get revlimid as a newly diagnosed patient. Unfortunately I was randomised to thalidomite which didnt agree with me so I had to come off the trial after 1.5 cycles.

I havent really noticed any difference in my care since coming off the trial although there are constaints re choice of treatments etc but that applies equally to the trial as it depends what you are allocated by the computer. If I had the choice I would still prefer to be on the trial.

Good luck with your treatment whatever you decide.

Wendy

[kaychappersParticipant]

Hi Jim sorry you have to come here, but the people here offer lots of support. I was 44 and extremely fit too. I was completely shocked, but I think we are going to here more and more younger people being diagnosed as they can pick it up earlier and that I am so pleased about. I was on the XI trial. There are lots of pills to take, but you soon get into a routine. Just take it a day at a time and ask lots of questions. Every case is different. Its not a walk in the park but you get through it. I have just had my stem cell transplant and getting there. Time seems to go quite quickly after the first couple of cycles. Keep in touch here. Kay

[PerkymiteParticipant]

Hi Jim, Just a welcome I am afraid, I was not on the Myeloma XI trial or anyother trial come to that. I think at 69 I am tooooo old:-D . I wish you the best of luck with your treatment. You will find all the information you need, up to date information that is, on this site and you will find on this forum a real nice bunch of people.

Kindest regards – vasbyte

David

[mhnevillParticipant]

Hi Jim

Like David just wanted to wish you well. If you join the Trial I hope it goes well and brings dreaded MM under control.

Very best wishes.

Mavis

[brochoParticipant]

Hi Jim welcome to our little club that no-one wants to be in! It must have been a huge shock for you , in fact it is for us all I was 51 , but 40 does seem too young The advantages are that your physical fitness will stand you in good stead when it comes to treatment and hopefully you will get to a point where you are in complete remission, so hang in there!! I was on the Myeloma X Trial a couple of years ago although I wasnt on it for long . I found the care was excellent as was the monitoring and I wouldnt hesitate to take part in another trial . My advice is to tell them of any changes you notice however small as they can adjust dosages so that life remains comfortable and minimum side-effects Good luck with the trial Bridget

[HelenParticipant]

Hi Jim
I took the trial route, hard decision but glad I did. Took revlimid and had no major problems, worked until stem cell collection, now 10 weeks post sct and been in complete remission since month 3 after starting in feb. I'm just 57.
Helen

[eveParticipant]

Hi Jim
Just to say welcome.

Myeloma X1
Husband started trials February this year,allocated CTD side,did 6 cycles with a small blip in between had septic pneumonia 22 days in hospital not very nice,with hindsight,should have been on Clexany,from day one,this is not automatic,but would have saved a lot of problems with blood clots.
ON trails bone marrow is taken more often,good thing in our case as after 6 cycle found Myeloma had increased in marrow.
Ctd stopped and on to 2nd treatment which is Velcade now on end of 4 cycle expect to do 8 cycles,bone marrow to be taken next week to see if Velcade has worked,problem being Myeloma now longer shows in bloods or urine,a little unusual,but everyone is different,very much an individual disease.
Slim has Bence Jones kappa lightchain Myeloma.

9 months later,with more knowledge and a little hindsight,would he still have taken that route,as Bridget says treatment is still there without trials,specially in larger hospitals????
Some people who are not on trials ,have to wait to see if there hospital,will agree also cost is involved,!!

His answer would be YES although I do think he might have responded better if he had got CRD side,again it is easy to say that,we will never know if this is the case until end of trials.
Also you have to take in consideration,how far your Myeloma has advanced,the early it,s found,the fitter you are and your attitude of mind all helps,as Kay says its not a walk in the park.

There are many people on here who have the treatment and sail through it,have sct and go on for years you just have to look at some history on different sections on Myloma uk.
This forum can help you ,answer your questions from a patients point of view,give you support when you need it,and in general become your cyber friends.

Good luck on your journey.Eve

[michelleSParticipant]

Hi Jim,

Today is ,y first day on this site. My Dad was diagnosed with Myeloma 2 weeks ago. He was consented for the XI trial and randomised to the RCD arm. He is 73 and quite fit and appears to be in the early stages of the illness with clear whole body xrays. I think you would benefir greatly from the trial. The nurses at Nottingham City Hospital where dad is receiving his care, seem to suggest that RCD will probably become the Gold Standard treatment in the future. So, I would consider it, you have nothinbg to lose.

Hello to all of you on here. I feel much better for having registered on here. Hello to Dai also – I may see you at The Haematology clinic at the City at some point!

Michelle

[tomParticipant]

Na then Jim

A warm Welcome to this great site, it has some great folk on here8-)

All I can add is Good Luck M8 as I have not been on any trail, just ctd then stem cell transplant:-D all in 2009 and am a young (ish) 56 😎 Keep fit.

Hi Michelle
Am using one post instead of two (saving Ink 😛 )

I also wish your Dad well with his treatment as you know I know nowt about the trials so cant add owt.

All the Best for you Both

Tom "Onwards and Upwards" xx

[OutdoorsPaulParticipant]

Hi Jim
I was diagnosed with Myeloma in August this year and I will turn 40 in December.Like you it came as a hell of a shock as i eat healthy and physically active to.I live on the Yorks/lancs border and receive treatment in Halifax and will have SCT at St James Leeds.My consultant acted very quickly with my diagnosis and spoke about the benefits of the Myeloma 11 trial and informed me about the "randomization process".I am on RCD pathway (Revlamid,Cyclophosphamide,Dexamethasone) and now on my 3rd cycle of meds.My experience over this short period is that I have received excellent care and support from all medical staff with very good access to my specialist nurse for any questions I might have while at home.While taking the meds I have found it useful to keep a short diary on if/how they effect you so you can look back and check.It always seems harder to manage other peoples reactions when they hear or you tell them.Just listen to your body, be active when you can and rest when you have to.You have definitely arrived at the right site for good support and advice from everyone who uses the site.keep in touch and always happy to chat.
Outdoors Paul:-)

[DaiCroParticipant]

Hi Jim,

I am sorry that MM found you and glad that you have found us. MM used to be regarded as an old people's disease but as someone has already suggested, testing is so much sensitive and better these days.

RCD does seem to becoming the norm… my first line treatment was CDT (Cyclophosphamide, Dexamethasone, Thalidomide). CDT worked well for me but kicked off my PN (Peripheral Neuropathy… which affects the nerve endings in your feet and sometimes your hands). It would seem that Thalidomide, while a wonder-drug in many respects, is the main perpetrator of PN… but it has been worth it for me.

Lifestyle seems to have little bearing on MM but things are constantly and rapidly changing in treatment regimes and success rates and there is talk that MM could soon be downgraded to a chronic disease… if so then your relative youth and vigour could stand you in good stead. The older you get, the more limitations are imposed on treatment possibilities.

I wish you well… this site is a goldmine of information and this forum is a goldmine of experience – my advice is to take in the former and take up the latter.

Stay positive… don't let negativity, in any form, anywhere near your head or your door… even if it comes wrapped in kindness and concern. Trust your Doctors but always ensure your concerns and questions are addressed… embrace your treatments… and accept that the accompanying side-effects, if any, are temporary but part of the healing process.

Stay strong, find yourself a mantra (mine was 'Whatever It Takes') and look to the future… for most MM patients it is getting better… almost by the minute.

Regards

Dai.

[gina45Participant]

Hi Jim, its a welcome from me also,its my mum that has mm.
I cant offer any advice on the trial, just eat healthy, keep yourself as healthy as possible and take care of yourself.
Gina x

[scott9Participant]

Hello Jim

Welcome from me too plus my deepest sympathies. I got mm last year at 57 and felt pretty cheated so I can imagine how you feel.
I started treatment with Velcade and then switched to Revlamid plus steroids. After 6 months of that I almost reached full remission. I didn't have the stem cell transplant and am now on maintenance therapy. I've had no particular bad effects on Revlamid – I already had partial neuropathey from the Velcade, and it's still there.
As others have said, stay positive and let your body tell you how much you can do.
Good luck.
Scott

[BADGERParticipant]

hello Jim

Sorry you have had to join It must have been such a shock for you as it is for us all I think the first question is why me!! but you are only 40 where a lot of us are in our 50 and 60s we all have to be positive there seem to more drugs and treatments everyday soCHIN UP:-)
Love Jo

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