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christaylor 7 years, 9 months ago.
my husband (aged 43) was diagnosed over Christmas last year. He has been through induction with 6 cycles of Velcade/Thalidomide/Dexamethasone. When he was diagnosed he was stage three with a poor cytogenetic risk factor (1q21 translocation). We have been told that this would mean any remission achieved is likely to be shorter because of that. He has some skull and spine Lyric Lesions which are not too painful at themoment.
When he started induction his paraprotein level was 96, he was severely anaemic and very poorly indeed. At 3 months into induction he plateaud and was told we had a very good partial response with his best paraprotein level being 7 and that this is as good as it gets for him. He has now been off treatment since completing his 6th cycle about 7 weeks ago and has immediately started to relapse with his paraprotein going straight up to 12.
He is due to have SCT shortly and as the hospital are concerned at such an early relapse they have said he needs to have double dose cyclophosphamide before starting GSF which makes absolute sense.
I guess my main concern/question is whether this early relapse is an indicator that any relapse achieved as a result of the SCT is likely to also be short lived because of this.
Sorry if this is a silly question – I just need to know what we are up against
Hi Emsie, Sorry to hear this news and as you will discover every person is different and the disease and treatments respond differently so to be honest with SCt it’s anyones guess and they can only tell you the “average” statistic. What I would like to stress is that at such a young age he is fitter and stronger to cope with aggressive treatments and recover well and quickly. The stage at which you are diagnosed is not particularly relevant and how you react to treatment etc is more important – so don’t dwell on the stage 3 bit. I would be concerned of such an early relapse but then he has had only one combination of drugs and that didn’t work for him – there are other combinations to try which may be much better for him individually and it is a bit of trial and error. I have not researched your translocation but when diagnosed I was in a bad way (just before being 51) and have high risk cytogenics – which means poor prognosis, likely to be more difficult to treat, aggressive etc – based on average statistics – but even with our cytogenics how we react is also very individual. Within these statistics you must remember the average age of developing MM is around 70 when you are weaker, have other health issues etc which skews the stats more negatively – being young and fit counts and should always be remembered as your “trump” card. I am 2 1/2 years into remission post SCt so, for me, the statistic hasn’t been my norm. IF you research SCT’s on this site you will find successes and some where it had no effect at all but they have long remissions from maintenance therapy instead or, if young, have gone from a failed SCT to a successful Allo transplant (Jet Black – blogger is one such example of this scenario). It has not been plain sailing for you so yes it is going to be a long tough road, the SCt is tough mentally and physically but he will bounce back much quicker due to age. If I were you, instead of seeing one treatment as a predictor/pattern for the following treatments try and view it as that one didn’t work well so let’s see what the next mix does. I would hope at such a young age if he can achieve remission status from SCT that they may discuss with you the possibility of a mini allo/ tandem transplant perhaps – this may be an area to discuss with the consultant if they feel remission may be short lived. The only way to cope well with MM is not to second guess and predict the future but to just stay in the moment and get through it one day at time. This is a hard but invaluable lesson to learn and I think it really helps you cope with the enormity of the challenge. When first diagnosed and in treatment my mantra was “Worrying does not empty tomorrow of its troubles, it empties today of its strength” it was the only way to cope mentally and help block out any negativity/wasted emotion. At such a young age I would highly recommend you look into good mental coping mechanisms as this is a rollercoaster of a ride that you must embrace. Best wishes
Rebecca
Hi Rebecca
Thanks for your response. Very helpful to get a feel for the experiences of others that are further along in the process.
I know it is not helpful to think of ‘what ifs’ but can’t help but see some of these things as just more barriers to being able to obtain a lengthy remission – perhaps because we are still relatively early on and I am still a the stage of analysing every development to assess the impact on outcome for the disease and the efficacy of the Transplant. Still at a point of feeling like our whole lives have been turned upside down and are unrecognisable in comparison to how they were previously.
Sadly I am a bit of a control freak that likes to look into the future and have ‘all my ducks lined up in a row’ and so adapting to this new way of thinking is hard.
It is nice to know that there are others out there that have been able to go on and have a tandem transplant with relative success as this gives us more weapons to fight this.
Thanks again
Em
Emsie, to be honest I talk about mindfulness etc as it was my great saviour in my treatment, but I am nearing 4 years of this and time makes all the difference. Perhaps it’s because I know of the sheer exhaustion and torture of looking forward and second guessing that I can now stop myself from going there. We are also at different perspectives and sometimes I think it is weird that I literally do not/will not think about the long term future and just blank it out – it’s a coping mechanism that works well…perhaps denial. I have a teenage daughter and in the early days I cannot describe well enough my anguish from my own mental torture of looking at “what ifs..” I had to stop/shut it down as it was killing me more than the disease. When in remission and you have a breather, life resumes, I think that is the time you truly come to terms with it. I cannot imagine/remember my carefree life pre MM where my only concern was wrinkles and considering botox..for such a long time I couldn’t imagine waking up without then the daily realisation of another day in myelomaville. I think it’s like when someones died and you wake up and for a brief moment you have forgotten and then you remember but……I am not on treatment. have been in remission for a while, am very fit, and I do not have that morning feeling anymore and I thnk life is great again, for now. This disease will always be there now and only time will help your perspective of it all. I like to think positively at everything purely because it is easier on the mind/mood to do so – there is no logic in hope – but it’s one helluva comforter and motivator. In essence the future you had planned, like mine, has been wiped out and replaced with the unknown – I needed time to grieve for my loss and accept the situation and only then did I start living well with this. Throughout my remissioin I continue to research etc and have it all in the back of my mind for when I might need it but the difference is, to me, I feel I do it on the same level as I would a “hobby” which I know sounds weird but in that, I mean I do it now in a relaxed, calm, information gathering way rather than when in the early days I obsessively researched trying to find success stories ..those who have bucked the trend etc..to give me hope.. and there are a lot of success stories out there. For every failure there will always be an opposite tale to be found and that is why now I think it is important for me, not to second guess my fate but to focus on all those stories that show anything can happen in a positive light. The advice I like to give anyone young is concentrate on finding good coping mechanisms for yourself and learn to sort your head out – our mind can inflict much more mental torture than I have ever experienced with this disease and so the mind should take centre stage as the focus of energy…for me anyway. Trust me this disese is not all doom and gloom but you have to get to a respite period to appreciate that fact and I am sure you will get there. Hold on to hope.
Rebecca
Hi Emsie, my husband was also diagnosed with MM a year ago at 46. I can totally relate to how you are feeling. He was also stage 3, has poor cytogenetics & had substantial damage to his back on diagnoses. Induction treatment at our local hospital of velcade dexamethasone & cyclophosphamide was ineffective & stopped after 5 cycles. We were given SCT as the next option . However like you I had concerns about an SCT without some form of partial remission ( his PP did not drop below 27). I trawled the Internet specifically myeloma beacon to see what was on offer elsewhere in the world. I read up on immunotherapy treatments & we transferred to a London hospital for a second opinion & I hoped more options.
I am so glad we did my husband is now on a new regime & is responding his pp is nearly in single figures & he is tolerating the treatment far better than the VCD. I just feel that there are options out there & where you live shouldn’t dictate what they may be. Check myeloma beacon, in the States they seem to be tailoring treatments to cytogenetic profiles there are so many new immunotherapy treatments coming through some are on trial here check all the options before going for an SCT. Different Consultants have differing views often based on what is available to them. I would recommend looking at the trials list on this website & possibly trying to get a 2nd opinion on what next step could be at a hospital involved in trials they maybe able to offer an option unavailable elsewhere that may give a deeper remission before embarking on an SCT.
Rebecca is right re a positive mindset & she is amazing. However I like you am a bit of a control freak, who is struggling to cope with the changes to our lives & the uncertainty that a myeloma diagnoses brings. Happy to talk anytime just message me. Best of luck, Jules
Hi Emsie, Firstly sorry to hear about your husband and I can truly understand the anxiety your feeling, the replies that have been posted are so positive and that is what you need for both you and your husband along side the treatment. I was diagnosed with MM but mine is the kappa light chain one but still amounts to the same treatment. I had my SCT nearly 18 months ago but before that went ahead had plenty of issues which of course frightened me, it’s only natural. I had a serious blood clot in my left leg so had blood thinning injections in addition to those I had had already, plus infections etc etc. the SCT was successful in that I have been drug free since then ( apart from the pain medication ).
With your concerns about relapse, I can only say that the SCT is massive ( not very technical ) but what I mean compared to the other drugs it really knocks it back. And with your husband being so young his recovery should be that much quicker, then after approx 100 days carry out a bone marrow biopsy .the results of which will determine if he can be drug free or a maintenance drug treatment. Then like what has been mentioned there are new drugs coming along that sound very promising. I am seeing my Consultant on the 9th Aug so keeping my fingers crossed on how mine is behaving . I wish you and your husband good luck with everything .
CT.
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