Hi
My husband is on the Myeloma XI maintenance treatment. After 100 days post transplant he was transferred back to our local hospital and then it was a few months before he was randomised and it was decided he would take maintenance. He realizes he can say no but wanted to go with what was decided for him by the trial and he said he can always come off it if he doesn’t like it but wants to carry on with the trial as this may help with treatment decisions in the future. I think he is now on his 6th or 7th month of maintenance and for the first 4 months he had one infection after another but has now been ok for a couple of months. Weeks 1 and 3 each month of the trial are his worst weeks and he has to remember to take his tablets and in the evening usually has a rest for about half an hour after the tablets. He took voluntary redundancy after his stem cell transplant so has no work worries and now spending more time on his hobbies which is good. I hope the maintenance treatment does mean that he has a much longer remission than if he had not had it but who knows – hopefully somebody will benefit from this in the future if not now.
Best wishes, Angela
My husband is also in remission and has been for just over a year. He had one infection after another from about October until January or February and was on antibiotics all the time but he has now been ok for a couple of months so I hope your husband gets a break from this soon. In my husband’s case it may be because his neutrophils are low which may be caused by the maintenance treatment he is on. He has monthly bloods but just sees the Consultant three monthly now.
Best wishes, Angela
Thanks Richard for your advice and you had a teaching job like Graham didn’t you Carol. Definitely best out of it with all the stress. Graham has taken up painting and did singing lessons for a while. He is now learning some new computer languages and says he thinks his memory has improved a bit lately but he agrees that you have to keep your mind active and do some sort of learning.
Happy Easter everyone x
Hi Susie
Graham is on Revlamid (Lenalidomide) 10 mg on days 1-21 out of 28. He also takes Vorinostat 100 mg on days 1-7 and days 15-21 of 28. He was transferred back to our local hospital 100 days after SCT and it was in October 2014 that he was randomised and then started his maintenance treatment. Until then we just assumed he had been randomised and they had already decided on no maintenance. After he started maintenance he had 4 periods of infections which have needed four lots of antibiotics over the winter and maybe the maintenance treatments are having an affect on his neutrophils which have gone lower but time will tell and I suppose that’s what trials are all about. Graham was diagnosed at stage 3 with spine fractures and he has no pain now and he is now trying to increase his energy levels. It is now week 4 and this is his best week of the month as he takes no tablets on week 4. Given the choice again once randomised Graham would still agree to go on the maintenance just in case this does improve the length of his remission but if the infections had carried on then you just have to weigh up quality x quantity time.
Best wishes, Angela x
Hi
My husband is on the Myeloma XI trial and after SCT a year ago is soon to start his 7th month of maintenance treatment. His maintenance is Revlamid and another drug which I have forgotten the name of. He has one week per month on no treatment but the other 3 weeks are not so good and generally he doesn’t feel as good as when he was on no treatment prior to being randomised for maintenance. We would have preferred no maintenance as he felt a lot more normal when on nothing and now it is a constant reminder of his myeloma. However, he wants to be on the trial and hopefully this will help people in the future and if it prolongs the disease coming back then it has got to be worth it all things considered.
Angela
Hi
My husband had auto SCT a year ago and definitely has memory loss since the transplant. He is now 57. He often finds it hard when he is speaking if I interrupt him as he then totally loses the thread of what he is talking about so I have to be so careful when listening to what he is saying. Not sure if this is chemo brain? He is definitely not as sharp as he used to be and has mentioned this to his Consultant and I was just advised not to help when he is struggling to remember things – I told him that’s no problem as I am just as forgetful anyway without the chemo. My husband Graham has always wanted to do a stand up comedy routine but I hope his forgetfulness doesn’t put him off from doing this. His hands and feet aren’t cold but he is just generally colder than me all the time.
Angela
Hi – are you taking Revlimid as part of initial treatment or as maintenance. My husband is taking Revlimid as maintenance along with something else which I can’t remember. He is also on the Myeloma XI trial and was chosen for maintenance while in remission – would have preferred to have been drug free for a while.
Angela
Hi
It’s nearly two years since my husband’s diagnosis now. It was during the first few months thatn I now wish I had had a bit of time off work but we were going through a reconfiguration and I didn’t want to take time off as I wanted to keep my job. It was 4 months of severe back pain before he was diagnosed with fractures of spine and then MM. Once he started chemo a couple of months later the pain started improving and he could then cope with working part-time himself (and part-time at home) up to the stem cell transplant phase. I had saved my holidays ready for when he went in for stem cell transplant and had 2 weeks at home with him before I returned to work. My husband’s job was restructured 9 days after his stem cell transplant and he was offered voluntary redundancy which he took. I am so glad I am still in my job as he does not need me at home all day with him and he is now undertaking activities that he was always wanted to do – learning to paint etc. I am now the only worker so I feel it is important to keep my job, maybe just for another 2 years when I will be 60. We have just returned from 5 days in Benidorm with our family to celebrate my 58th birthday and his year’s remission. This time last year he was in hospital recovering from his stem cell transplant.
I would advise you not to rush into any decision about work as things do get better and I would like to wish you both good luck for the future and a long remission 🙂
Angela x
Hi everyone. This time last year my husband had had his Melphalan (heavy dose of chemo on Thursday last week and then the stem cells returned on the Friday. As we live near the hospital he was told he could come home until he started feeling a bit poorly so he stayed hom until the Tuesday and he was then in hospital for just over 2 weeks. After stem cells returned he came home smelling of cabbage for a day or two and we were later told this is normal – it’s something to do with the preservative that the stem cells are kept in. He went into hospital the day before my birthday on 10th Feb and it was a miserable time for us both but he never got the sore throat and his hair didn’t start falling out until the 2nd week as an in-patient. He has very fine hair anyway so it was not too noticeable and that’s when he shaved it off. He felt weak for a few months when home and he was offered voluntary redundancy as work restructured his job while he as in hospital and then wanted him to attend for interveiew 9 days into recovering at home for a new restructured teaching job:( He achieved full stringent remission so it is all worth it and he has now been in remission for a year. In a couple of hours we are off to Benidorm with our family to celebrate my birthday and his year’s remission. We send our best wishes to anyone going through this now as we know how you must be feeling.
Best wishes from Angela and Graham x
Hi Tony and Robert
Thanks for your responses. I can understand totally not wanting to go on the maintenance treatment and both me and Graham were hoping that’s what was decided for him. As everything had worked so well for him this far he decided to git the maintenance a go and will probably give it another 3 months before making decisions to come off it. We thought that if maybe it gives him an extra year of remission (only guessing though) then it would be worth it but nobody really knows and also everybody’s myeloma is different. We are hoping to hear good reports of people being on this maintenance for years and feeling good. I would love a dog and now Graham has given at work thought it would be the perfect time and he could go for lots of walks with it but he has said no so far.
You sound very fit Tony and I have heard that exercise helps with the fatigue so hope Graham can increase his walking. Nice to hear from you too Robert anbd it must be really hard making the decision about treatment and I totally understand your prefernece for no drug taking for a while as when Graham was taking no medications for a couple of months we started to forget about Myeloma and now he has to take medication on a four week cycle and have a blood test at the end of every month (which fits in well at the time of his monthly Zometa). If this doesn’t do Graham any good hopefully it may make a difference to treatment options in the future.
Best wishes to you both for 2015 🙂
I agree Richard. We will do a toast too. Hope you are keeping well.
Thanks Simon – same to you. Have a good one. Graham was preparing for stem cell transplant this time last year and we even wondered if he would be in hospital over Christmas but in fact he went in for STC in February. He is still in remission and I hope he is for a long time to come 🙂
I looked at your posting to see what your dilemma was with regard to multiple myeloma. However, I was totally surprised by your posting. You are definitely on the wrong forum to discuss the problems that you have. This forum is for people and their families who have multiple myeloma and I suggest you raise your question elsewhere.
Glad you enjoyed it Jean. The drummer is my mother (aged 77). She sang the best too. I think she missed her way!
Hi
My husband aged 56 had his stem cell transplant in February this year. When he came home from hospital he spent the first week upstairs so he was near the bathroom and didn’t have to manage the stairs at first. I was at home all of that first week. For the next 2 weeks I worked half days so I was still there to prepare meals for him and make sure he had his tablets and then after that he was on his own and managed fine. No nurses ever came to the house and no nurses were ever needed as I could be there.
Good luck for her treatment – my husband now in remission and doing well.
Angela