This topic contains 11 replies, has 9 voices, and was last updated by 
eve 8 years, 5 months ago.
I am in a complete state of shock. My husband was diagnosed in September 2014 with Myeloma. They managed to get his kappa light count down enough to give him a SCT on September 7th 2015. Everyone on this site seems to have gone through their SCT’s with few complications so we thought it was just a formality and were very excited as he had just retired so we thought we could now begin our new life. But it wasn’t to be, he suffered with severe sickness as soon as he had the high dose chemotherapy and grade 4 Mucositis but then started to have breathing problems. He was put into intensive care and intubated although fully conscious. I was told different things all the way through, that he had an infection, Pneumonia, too tired to breath etc etc., but after 7 weeks of being in hospital they said that although the SCT was a complete success the chemo had damaged his lungs and they decided to end his life which they did. I don’t want to frighten others who may be going in for a SCT but I need to know if this has happened before, surely my husband can’t be that unlucky to be the only one. Is it only the good results that are put on the forum? We were never told this could happen. I feel traumatised at the moment as i never thought for one moment I could lose him like this. If he had died from the Myeloma I could have accepted it more but to die from having his SCT is hard to come to terms with.
laura .. my heart goes out to you yes i was told there is a risk to every sct but to hear it told in detail to a real person that is a shock. no words can explain how sad i feel for you xxx ann
Laura I’m truly devastated to read your post. The risks were explained to us before my husband had SCT but to be honest I don’t think they registered with me. Although my husband has been in remission for over two years, he said he would never do it again. I’m truly sorry for your loss
Jean xx
Laura
I am so sorry that your husband has passed away due to his SCT. My husband had his SCT in May and although we were told there was risks we didn’t really take heed of them. He had no ill effects from SCT and is in remission. I am sure you thought the same and it must be awful for you. I hope you have lots of support from family and friends.
You will be in my prayers.
Maureen x
Hi Laura my partner Geoff went in for his 2nd SCT on 14 September this year first two weeks fine in third week his platelets were not rising as they should he was given platelets and blood but still no rising our consultant noticed a condition called TTP he had to then be rushed to Bristol for plasma exchange Geoff unfortunately lost his fight too we thought he would be coming home x I know exactly how you are feeling at this precise time but at least I know he is no longer suffering x x
Hi Laura, so sorry to hear your news. I think SCT is considered as just a harsher treatment and with that greater risks. I wasn’t given the talk of what could go wrong and how the chemo can seriously damage heart and lungs (but knew about it) but, with kidney damage, I was told the chances of my dying was 20% – increased from the usual less than 10% risk. At 52 and with a young daughter I just blanked out all the risks and saw it as my only hope (my husband did not want me to take this risk). I had serious complications once home and felt close to death at one point (due to infection) but recovered well. I then looked back and wondered how I could have treated it so frivolously, not saying goodbyes, leaving letters etc but then I was feeling desperate for a longer future. I have heard many sad stories from those who go for a 2nd SCT – how the chemo has seriously damaged heart or lungs and negated the benefit of it all – but also heard about success stories too. I guess we should remember that melphalan is a derivative of mustard gas but we do what we feel we must to survive. I am so sorry to hear of your husbands experience/passing and thank you for posting the “other side” of the success stories – it is important to recognise the risks but when you are backed into a corner it is so very easy to dismiss them and think that it won’t be you.
Rebecca
Thank you all for your most welcome replies and kind thoughts. I am thinking now perhaps like most of you that maybe Mike my husband would still have had the SCT had he known the risks as we do see it as the chance of living so much longer and put the risks to the back of our mind. I suppose at the moment I want someone to blame as I am hurting so much but I know thats a ridiculous thought and nothing can bring him back even if the doctors had said they’d made a mistake. If Mike had not had the SCT transplant and maybe died 6 months down the line or something I would be wishing then that he’d had it so there is no easy answer. I think he was just very unlucky.
For Jacquie Coleman: Thankyou for your reply. My heart goes out to you as I know the pain you must be going through so thankyou for taking the time to reply to me. I am so sorry for your loss. This damn Myeloma!
hi Laura, I obviously do not know you/husband personally but I think perhaps he would have had the SCT even if risks were explained more fully. I know at that time you are carried through the whole process with big “hope” that you will come through it and that fuels the decision. I went against my husband in almost gung ho fashion because I felt “it” wouldn’t be me – totally unsupported but perhaps we are blinded in that terrible time. SCT is sold as the gold benchmark and encouraged and, for most, it is. I knew that I had to do it as it was my “chance” and I didn’t want to not do it and always be tormented by the “what ifs” if remission was short (which mine was predicted to be)and I wasn’t in as good condition to have it done then. God knows getting your head round it and going through treatment is hard enough but we do it because we have “hope” and I think if I had declined due to increased risks I would have spent the rest of my time waiting for it to come back bigger and harder and not enjoyed my respite. Having it and surviving it gives me that further “hope” that I think I really needed to cope. It is difficult to articulate how you feel at that time but SCT is, I feel, seen as a lifeline and if you are reasonably fit then you throw your chips on the table and hope they land in the red. Please don’t ever feel you should have deterred him and be plagued by different “what ifs” because you do what feels right at the time x
Hi Laura and Jacquie I am so sorry for your loss, I can only offer you my kindest thoughts at what must be the most difficult of times. I too am due to go in on Sunday for my first SCT and after my appointment Monday I have been in turmoil. I have so many questions and after reading all the posts here I have even more!
Rebecca I am 55 I too have underlying problems, I have two mechanical heart valves and have been told that the risk is 5% , the doctor was quite blunt and said as I am on blood thinning meds I could have a bleed or I could get an infection that goes to my heart- what do I do I want to feel well and get on with life- I have three wonderful grandchildren, the oldest only 5 – how long can we fight myeloma without a SCT?
Dear Laura and Jacquie I too am sorry for your loss.
Karen, The Myeloma Beacon US site may be worth looking as the US has a very higher numbers with myeloma and there is a lot more debate by patients on it regarding whether to have an SCT.
When one has co-morbidities (and I am one who has) the risks are higher. Your doctor has advised you of risks to you. I never really wanted SCT and when told I was not deemed eligible as the risks were much higher, (not as high as Rebecca’s posting earlier), I was not unhappy. I do not enjoy a life on continuous drugs, but I am alive although not in the shape I once was. Others on this forum also have not had an SCT because it was excluded or from choice.
There is a very strong view that all people who have SCT will have long remission. I have met a few at my clinic where this has not been so. The choice then becomes drugs, second SCT or a high risk Allo transplant.
I only bring these issues up because whatever decision is made there are no guaranteed outcomes either way. No treatment offers a cure and 10 year survival is for very few, some I have come across . An SCT may work brilliantly to extend life in some, but not for others. For some newer drugs too, with all their side affects, can give longer survival now than the treatments of earlier times.
There are many many variables in how well myeloma will respond to whatever treatment is given. I had some idea from research I undertook that the features of my myeloma cancer cells, aside from my co-morbidities, did not favour SCT for me. I live with the decision I took not to push for SCT. I am not fighting myeloma, but living in hope the doctors treating me can give me an average survival on drugs, in reasonable quality of life. If I live longer they will have done rather well.
Only you can decide, taking all the information available to you, on whether the benefits of an SCT would outweigh its risks for you. It is still considered the Gold Standard in the UK for younger patients like yourself.
My best wishes for the rest of your journey.
Dusk
Hi all, Jacquie my apologies for emitting my condolenses in my last post – I am truly sorry for your loss.
Karen, I had to go to another hospital who was prepared to risk my kidneys as I was turned down by the one that would be usual for me to attend. the risk of infection wiping out my kidneys was their main concern I think. Whilst my gut told me to do it (altho it is very comfortable living in denial) my deciding points and that of the hospital was – I had only had velcade/dex due to kidneys and that is not known for a long remission – it was thought I might have to go quickly onto other drugs for maintenance which would also take its toil on my kidneys. But..I have high risk cytogenics – novel drugs supposedly don’t touch it – so it was thought to be now or never decision as I was in good health but they felt on relapse I wouldn’t be as good. Now, If you have low cytogenics and have a different regime say CDT and achieve remission with that then length of remission is considered longer than my regime…But – we never know how we will react – I always say that whilst I have high risk cytogenics that is the “average” and may not affect me the same. I had a minimal residual disease of 0.3% and they wanted that eliminating because of the cytogenics – after SCT it was the same – so absolutely no change. I am 3 years since diagnosis and 2 years since SCT and am in normal range still – did the SCT deepen the response or would I be one of those who would have got 2 yrs from velcade only anyway? No-one knows, my consultant re SCT said he was sat there like a bookmaker and proceeded to say people they thought won’t do well do and those they think will do well don’t…. Such is the imponderable individuality of this disease. I am a very active person so permanent maintenance also did not appeal to me.
I would also caution against the debates re SCT/not SCT on the US site because they have individual packages of treatment and a wide array of drugs at their disposal- we do not and is a one fit suits all – or not as the case may be. I saw SCt as another treatment option to use in the very small sweetie jar. Karen, you are obviously jittery now so you must also take that into account but you have to weigh up your options as rationally as you can with whatever info you have re your case. I’m afraid it’s all a bit of a damned if you do and damned if you don’t scenario. I said in my previous post I would have been plagued by “what ifs” if I hadn’t done it but then I wasn’t expected to achieve a long remission without it. Why not phone the helpline and talk through your situation they have a wealth of knowledge that they can pass on. Finally (sorry I type as I think it so ramble somewhat) if you proceed you need to go in with a 100% positive attitude that it will work for you as goodness how I’d have felt if I didn’t have that to help me through the days. Good luck with it all – let us know how you get on x
Hi Laura
I am so sorry for your loss,before a consent form is signed the doctor has to explain all the risk involved,you tend to be bombarded with information ,so in the light of this I would say it was explained and because of the amount of info you have to listen too,it’s been said but not regested. I do think information like this should be repeated,plus explained so people like you,don,t have these doubts after,with hindsight,may be this forum can do something about it, example : hospitals put it in writing and the patient take away the info to read at leisure,then make a decision.
Myeloma very seldom is the cause of death,infection is the more likely cause of death,as the body cannot cope with the infection ,it’s a chance everyone takes,my husband was not recommended for a SCT as his lungs where damaged,he had a SCT survived,but the myeloma came back very quickly.
May I offer you some practical advice now you are a widow,there is a private forum called Way Up,for widows and widowers ,we all help each other through the berevement process,a bit like this forum,there is always someone’s footsteps in front of you and behind you walking on this road,and we help each other as we go along.
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