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Hi all, my name is Colin, aged 60, am a keen sportsman, married with two daughters–I have already found it helpful to read posts on this site.
I have just been diagnosed with Stage 1 Multiple Myeloma, & have to start treatment next week– I need to make a decision by Tuesday whether I want standard treatment ( VTD & upfront ASCT or clinical trial Carfilzomib/Cyclophosphamide/Dexamethasone-with maintenance Carfilzomib for 18 months, but with random selection of upfront or delayed ASCT
Any advice would be much appreciated–I’m having such difficulty with the decision
Colin
hello colin welcome !! absolutely no way can anyone advice you on this decision i was diagnosed jan 2014 followed by six months of CDT wich is chemo dex and thelidamide sorry thats the wrong spelling followed by sct in the freeman hospital august 2014 i have been in remmision since then which is eighteen months and doing quite well medicaly retired from work yes life is diffrent but try. to keep some normallity and have breaks away and holidays when feeling good sorry cant a dvice you because the choice is yours good luck with it all xx ann
Hi Colin, Welcome and what a decision you have to make. Your consultant and MM nusrse specialist will give you the pros and cons and I guess the main thing is you get maintenance and possibly delay SCT until first relapse. I had velcade/dex then SCT – no maintenance as not on a trial. It is difficult to know what you want until you have started treatment, I think, and know what it’s like being on treatment. I am now 2 years post SCt and value the “no” treatment phase as it does not hold my body back – so to speak – but then I never had the choice in the first place. My feelings of trials is that they are trialling things that are perceived to be better than the standard treatment so, to me, that is always worth considering. You will soon come to grips that MM is very individual in how it responds and no 2 people really react the same so if you ask 2 people on continuous maintenance how it affects their quality of life you may get two very different answers.I think you have to go with your instinct on what you would prefer – drug free or maintenance safety net? tho on relapse you can then go on to maintenance style approaches until it becomes ineffective. There is plenty of research material out there re. the effectiveness of maintenance, SCT up front or at relapse – if you haven’t already checked the Myeloma beacon US site you will find a wealth of information together with the US protocol of standard maintenance etc. If you pose the question on there I am sure you will get some very informative answers.To me, it’s a lifestyle choice and what feels right for you – you say you are a keen sportsman – how important is that to you? what are the known down sides of continuous treatment for you to consider? – again consultants/nurse specialist/this helpine/ and asking on the forum of people on maintenance how they perceive it to impact their life. I did not have your dilemma as there was only one treatment path for me at diagnosis, due to damage, and am not sure at initial diagnosis I would have known how to react in such a terrible time of turmoil/upset. Good luck with your research and I always think having asked everyone and made a list of pros and cons – go with your “gut” feeling on what will suit you/your quality of life/your mental well being. Not particularly scientific but I always trust my gut!
Rebecca
hello Colin, big decision for you. My husband Peter dx Oct2014, had radiotherapy,6 sessions then 12 months of Chemo, and an SCT last December 2015. he tolerated the Chemo really well but did have 2 bouts of Pneumonia in that time. SCT went OK but really bad chest infection even after that. Was told in Feb that he was now in Remission. he was offered a Trial after his SCT this was at the Royal Marsden where their Research is brilliant but after many conversations, his own thoughts and talk with Consultants, he decided against it and I can understand why. Well, he had being having all kinds of treatment and his SCT and Trial was a ‘blind’ trial. he would have had to attend hospital every two weeks for 2 years, that was too much for him to do, and for me also. After all that he had been through he just wanted some kind of normality, we had just bought a house in France where friends live, only the month before his diagnosis. His Consultants told us that even they don’t know who is getting the real drug or just a placebo. Yes, later on in the trial, the Consultants might guess who has had the real thing, maybe if some people suddenly had amazing results, but it was not for him at this stage. Imagine living with that, 2 years sometimes feeling rotten and always wondering if you might only be taking an ‘aspirin’! Not for him and not for me either. It’s not been easy even after SCT as he foolishly went to Dubai for 2 days for a business meeting, came home with a cough and 2 days later Pneumonia again and still not recovered properly. My fault in a way as I work for BA and get tickets so he pestered me until I got one for him…….. never again. If ever it gets to the stage where he is in dire trouble (as if he isn’t now) and it was not a blind trial, then he would go for it. I am obviously not the patient but I would always take the SCT first, if I were the patient. sorry for rambling but I am literally just putting my thoughts on paper. Talk more with your Consultants, find out what kind of trial, a real one or a blind one, for starters. Go with gut feeling as Rebecca said but be armed with as much information as possible. Ellen, one of the Specialist nurses for this site is wonderful she will answer lots of your questions and give you any information that she can. first find out what kind of trial exactly, normal or a blind one and what are their views. it’s a lousy disease and so many people haven’t heard of it, they all think it’s Melanoma!!!!!! Where are you being treated? I wish you all the luck in the world and have to say it but Welcome here and to the Murky world of MM. It’s a struggle but one way or the other…just go form it. with love and best wishes. Val x
Hi Colin
Don’t know if you have seen any of the Myeloma UK webinars but there was one on `Maintenance Treatment and Myeloma’. You can find it on this website by typing in Webinars into the search engine which will then direct you to Youtube. This may answer some of your questions. The other suggestion is to maybe speak to someone at a local support group.
Hope this helps.
David
Dear Ann, Rebecca, Val and David
Thank you for your helpful responses-it makes such a difference to hear from people on their own special journeys.
Trouble is, having never heard of multiple myeloma, I have now read so much in the last two weeks I feel so full of facts and figures, I think I could go on mastermind with MM as my specialist subject!
But quality-of-life is so important to me, so I guess it is down to gut instinct and I am now writing out the pros and cons! I’m also going to do some research on the myeloma Beacon and on the webinar & maybe speak to someone like Ellen.
With so many thanks again & with very very best wishes to you and yours !
Colin
Well Colin, it sounds like you are being pro-active and gaining what control you can so good for you. Incidentally, I was a fit 51yr old on diagnosis (but severe kidney damage). I like to play tennis – a lot – I continued throughout treatment for 8 months and when I came off treatment and had a 5 month gap pre SCt it was like a fog had lifted and whereas before I was playing tennis ok – when I came off treatment I realised it had been like playing in quicksand! (my consultant could not understand how I managed tennis on treatment but it was my normality/coping mechanism. Whilst my Sct did not go smoothly I was back to almost full fitness in 3 months and life has resumed as normal – I am very fit now, running, playing lots of tennis… so life can go on as near normal as possible. My immune system is very poor since SCT but it doesn’t hinder work etc. When I overdo the exercise/work I do get very susceptible to colds that won’t go away but that’s it. So please don’t think “life is over” it won’t exactly be the same with the black cloud above your head but you will find coping strategies for that side of things. To me exercise is great for mental health as well as everything else so do continue with your sports.
Rebecca
Dear Rebecca, thank you for your further really helpful advice, which has given me a real lift!! my sport passion is my tennis, which I so enjoy, but haven’t been able to play for some months now due to pain-so I am keen, whichever path way I choose, to gradually try to get back to my tennis & running while I am on treatment– They have said it may be possible, and that’s good enough for me! For me, that’s about enjoying what we do , capturing a feel better factor,and taking back some control !
Thank you again Rebecca for such an encouraging and inspiring message!
Colin
Colin, whilst on velcade/dex – the dex can make things difficult abit like speed (I think) so up all night etc but as regards exercise I was taking my BP at home and when on dex I had heart arrhythmia (picked up by my cheap BP machine) and BP was higher/heart rate higher on dex day. What I used to do was play tennis then take my dex tablets and not play the next day – by which time the temporary arrhythmia/HBP had gone. It is all doable if you want to, you just have to make some adjustments and be aware of your bodily changes whilst during treatment. Someone told me their consultant advised no cardio sports whilst on treatment for fear of stroke I think – mine always said do what you feel comfortable with and live your life – this is how I got through it. As treatment went on I slept soundly even whilst on dex days as my body was exhausted after exercise. To me, this was the best gift, as soon as I shut my eyes I was dead to the world but happy that I had carried on as near normal as possible. If you have bone damage then you should have all the necessary tests and consultants advice before doing tennis – I was initially told no tennis/impact sports but now my consultant says just carry on what |I am doing. I firmly believe to do what you feel comfortable with, be aware of the risks, make sensible adjustments and most importantly always remember this is your race – run it how you choose.
Rebecca
Rebecca
Hi Colin, One more thought re. your pros and cons. Have you asked the consultant to explain your cytogenic profile from your bone marrow biopsy? Have you any deletions/translocations that make maintenance much more favourable? You will be either low, standard or high risk (considered more aggressive/difficult to treat) based on your cytogenics. However, to highlight the individuality of it all, I am high risk and yet it was ok to treat and am now 2yrs 4 months post SCT without maintenance and whilst numbers are slowly creeping up they are still within normal range. I always remind myself that MM is very individual and altho’ there are generalisations/assumptions it does not mean they will apply to you and yours but….whilst considering all the facts in play – cytogenics is an important one. The type of treatment you have can sometimes negate some poor cytogenics, for example, velcade is known to eliminate some unfavourable cytogenics etc. Do make a call to the Helpline also when mulling everything over as they can sometimes “flesh out the bones” with their experience.
Dear Rebecca-thank you so much for your advice here-both regimens include the dex, so such strategic planning is very important to keep some element of control for me.
The trial is tempting me at the moment, but I’ll look into the issue of the cytogenics–
Whichever track my gut instinct guides me to, I am determined to watch my reactions over the first few weeks and then begin to impose my life priorities on the interventions as far as I can
Thank you so much again for your messages–it is so appreciated
Do please continue to keep winning!
Colin
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