Hello
I was first diagnosed when I was 49 and relapsed when 54. I am sure Her consultant will give Her a course of treatment before the SCT. This seems to vary with each consultant. I had Cyclophosphamide, Thalidomide and Dexamethasone. The Dexamethasone is a steroid and from my personal treatment it gave me a good appetite. I think consultants use steroids in each case, which one may differ. My suggestion would be to tell the consultant about these 2 issues and I am sure they would come up with a solution. I hope this helps a little but I can only talk about my personal situation as have I have said consultants have there different courses of treatment and also each patient is different. I am having treatment again now (I am now 60)of which Dex is part of it and again my appetite has increased. Sorry I cant give a definitive answer to your questions but the issues something your Mums Consultant should be aware of.
Best wishes
Kevin
Hello Scott
I was 48 when diagnosed and just turned 60 last week. Work – long story – Before diagnosis had planned to retire early but loved job. Then diagnosis was unsure of prognosis, also it had damaged my spine. worked in hospital and lifting involved in job so weighed everything up and decided to retire. Company and management were absolutely fabulous and helped in any way they could. Still hear after 12 years and very much regret giving up work. However I now look after my 18 month granddaughter 3 days a week. It is a 4 week cycle with the carfilzomib and dexamethasone given for two consecutive days for the first three weeks then in week four no carfilzomib and a dose of dexamethasone tablets. Each session takes about 2 hours now as they have administer the drugs over a set time period as also pump you with saline. I’m lucky enough to have nurses treat me at home. I am down in Kent and see my Consultant at the Alexandra.
Am happy to answer any questions however I have never been interested in the ins and outs of the disease, I leave that to my consultant. The only thing I know about are the par protein count. All I ask is how things are going and so far he has so going good para proteins going down. that’s all I really need to know.
Happy to answer any questions if I can.
Best wishes
Kevin
Hello Scott
I am being treated with carfilzomib and am in the middle of my 3rd cycle. I believe it is a targeted medication instead of a general one. This is my second relapse with my first 2 treatments being CDT followed by a SCT. I was first diagnosed in 2006. They give it to me along with dexamethasone. I also have a monthly infusion of Zometa. I started the treatment in January and believe my Para proteins were around 22. The latest count I was told was 5. It seems to be working and I am convinced they will soon be undetectable. Have been lucky again and had few and not too severe side effects. The main one being tiredness and lethargy but manageable if I pace myself, which I don’t always do.
Best wishes
Kevin
Have only a months experience of carfilzomib. Briefly I was diagnosed on 2006. Cdt followed by SCT. 5 years remission. 2013 CDT followed by SCT. – 5 years remission. Started to return 2017 and started treatment in January 2018. Carfilzomib and dexamethasone. My experience is that I had different side effects from my first 2 treatments even though they were the same. I have only had one cycle of my current treatment and the only significant side effect at the moment is lethargy/tiredness/ fatigue. although not great could be a lot worse. My attitude is I just plough through it. Sometimes ok sometimes not so good. My attitude is that I know this treatment will work and I will have at least another 5 years remission.
Best wishes
Kevin
Hello Leza
I had my 1st SCT back in 2007 aged 49 and was in hospital for 17 days. I had my 2nd SCT in 2013 and was in hospital for 18 days. Both courses of treatment and the SCTs gave me full remission. As you say everyone is different but the doctors need to be sure you are well enough and able enough to cope with the big wide world before they let you out. My second SCT lasted until January this year and have just had some radiotherapy and assume will be stating full treatment again soon. Both my SCT were Auto.
Best wishes to you both
Kevin
Hello Susie,
I have had 2 SCT now and would certainly agree with Greg. 6 weeks is certainly quite early especially when you think of what your body and mind has been through. Not only the SCT but also the treatment before it, On both occasions it was around about 3 months before I felt I was over it but then again a little while longer before I considered myself completely over it. It seemed a slow process but looking back I would say to myself I wasn’t doing this or couldn’t do that last week. Only small improvements but a boost non the less, Although not dramatic I could see improvements. I was impatient but I think it is was a case of it will take as long as it takes and nature will take its course.
Best Wishes
Take care
Kevin
Hello
I was first diagnosed in 2006. I have had 2 courses of CTD and 2 sct. On both occasions I was asked if I wanted to have the SCT and each time asked the advice of my consultant who each time thought it was the way to go. All I can say is that both courses of treatment and the sct gave me about 4 1/2 years of full remission. Regarding the treatments although they were both identical they were both different in there side effects. Six months ago I started to relapse again and am just waiting for my count to reach a level my consultant decides we need to start treatment. He has suggested that this time it will be revlamid.
Best wishes
Kevin
Hello Susie,
Have not had these combinations of drugs as a course of treatment but did have high dose melphalan for my SCT’s. All I would say is that I had the same treatment both times which was CDT followed by a SC. Both gave me a full remission for about 4 1/2 years but each time I was affected differently with reference to the side effects. So even the same treatment affected me differently. I am at present relapsing and have been told this time I would have revlamid. It certainly can be a very difficult time both physically and emotionally. I have always been very positive and have always believed the treatments would work. So far this is the case and have no reason to believe this will change.
Best wishes
Kevin
I had my second SCT about 4 1/2 years ago. I had ctd when first diagnosed and because I achieved a good result I had ctd the second time. Although the side effects were different I achieved another good result. Sorry I cant remember at what paraprotein level I started treatment at my first relapse but I think this does depend on you consultant. My current relapse started about 6 months ago with a count of about 5. In April it had gone up to 8. My consultant hasn’t given me a figure when he would want to start treatment but said this time it would probably be Revlamid. I see him again in July.
Best wishes
Kevin
Hello Adrian
I have had two SCT and from my recollection I had a dose of chemo (melphalin I think) on both occasions about a week before the harvest followed by injections to encourage new stem cell growth. This was done as an out patient. On admission to hospital I was given another dose of chemo before having the harvested cells implanted/ As regards hair loss again not sure of the time scale but think I started to loose mine during my stay in hospital for the implant and that was about 3 weeks after my initial chemo for the harvest. As to it coming back I think it started a few weeks after coming out of hospital. I did not possess much hair on my head before all this but noticed it coming back when I had to start shaving again.
Best wishes
Kevin
Hello Teresa,
I was diagnosed in 2006 and have had 2 courses of treatment and 2 SCT since then and both of which gave me about 4 years of full remission. I am now 59 and it has just started to return. I was also very positive and found this helped and am sure the treatment I will receive this time will work. They say that although not curable it is very treatable and this is what I have found.
Best wishes to you both
Kevin
Hello Mick
I didn’t do anything specific. I have never been interested in the details of MM. The only thing I would ask my consultant was how it is going. During my treatment I have always been confident that it would work and that also applies to the treatment my consultant decides I should have now it is returning. Initially it did some damage to my spine and this sometimes gives me some back pain and this is the only time I really give MM some thought when in remission. I have confidence in my treatment and am positive that each time it returns I will beat it.
Best wishes
Kevin
Hello Jason,
I was first diagnosed back in 2006. It returned again 1n 2012 and as of now has just started to come back again. On both previous occasions I had a course of CTD followed by a SCT. In both cases from stating the treatment to leaving hospital after the SCT was about 8 to 9 months. I don’t know weather this would apply to VTD. It seems to be an individual disease and even in my case both times things were different. Both were certainly doable and gave me around 4 years drug free. From my last blood test I have found out that it has just stated to return. No treatment yet and when needed I don’t know what I will be having, only that I will not get another SCT. Two seems to be the limit. I just let the medication do its job.
Best wishes
Kevin
Best wishes
Hello
I was diagnosed in 2006. In that time I have had 2 courses of CDT and 2 SCT. They gave me about 4 1/2 years remission each time. (Just found out last week it has started to return). As has been said there are no set rules and everyone is different. Even my two treatments varied. One CDT ok and one not so good. One SCT ok and one not so good. Even the same person can experience differences. The not so goods were doable. I also went into my first SCT with all the possible side effects on my mind. In the end it wasn’t too bad at all. The second one I was not too concerned about because the first one had been ok. This was worse than the first one but perfectly doable. I think I was probably spoilt by the lack of side effects during the first one. I can say that both were worth doing for the complete remission they gave me. The hardest thing I found with both SCT was to keep myself occupied so take a few things in with you.
After your 6 rounds of VDT this is another 2 to 3 weeks then you are there.
Best wishes
Kevin
Hello Richard,
I like you was diagnosed when I was 48. That was 10 years ago. Since then it has come back once. I was treated both times with CTD and have had 2 stem cell transplants. Each treatment gave me full remission and am currently on no medication and having a blood test and see my consultant every 6 months. Am happy to answer any questions (if I can ) you may have. I have never taken any technical interest in it, am just content to see the Doc and let him tell me where I stand. That is at the moment in full remission with my next blood test and consultation in January.
Best wishes
Kevin