Hello Lilly,
I have had 2 SCTs now (diagnosed in 2006) and after each one had about 5 years remission. I didn’t have much hair in the first place but remember most of it going and not having to shave for a while. Everyone is different and even though I had the same treatment twice one was ok but the next was not quite as good. I Remember starting to feel better a few weeks after finishing treatment but took a little longer to totally get over it. Wil finish 2 years of treatment and maintenance in November and intend to be feeling ok by Christmas. I think each Consultant has their own thoughts on treatment looking at each person individually to see which treatment would be best for them.
Best wishes
Kevin
Hello Jonny
I was diagnosed back in 2006 then 48 and like you had never heard of it. Still going strong at 61. Couple of set backs but they were sorted. Just coming to the end of my current treatment at the end of November. New drugs coming through since I was diagnosed and new discoveries all the time.
Best wishes
Kevin
Hello Dave
Optimism is certainly ok. I am both optimistic and positive. Diagnosed in 2006 at 49. I asked and was told my prognosis was 50/50 to make 5 years. I always remember this and smile as the consultant said ‘I wont be wrong’. Here I am coming up to 13 years post diagnosis having had 3 courses of treatment, 2 SCTs and 2 remissions each lasting about 4 years. I am currently in full remission and on maintenance treatment until November and looking forward to an even longer remission. I had not even heard of the drug that I had for my latest treatment and am having as maintenance when I was diagnosed. I am sure there are even better treatments around the corner. It is as I am sure you have heard a very individual disease and am sure when / if it returns there will be something else to sort it out. I have great faith in my consultant and am sure he will keep me going for many years to come.
Best wishes
Kevin
Hello Tony,
I have found that ‘positive’ is good. I was diagnosed in 2006 at the age of 49.Have had 2 relapses in that time and am currently on maintenance treatment until November. I was told when first diagnosed 50 / 50 5 years. There are new treatments coming about all the time. I don’t remember the treatment I am on now being available at the time of my diagnosis.
Best wishes
Kevin
Hello Adrian,
I was diagnosed when I was 49. Two relapses with all three treatments giving me remission. Certainly can be treatable if not curable. Just having a bit of maintenance treatment now after my second relapse. Still here nearly 13 years after diagnosis.
Best wishes
Kevin
Hello Amme
Just to say I did not have enough stem cells from my first SCT. Not sure whether this was because they only took enough for one or couldn’t get enough. For my second SCT it tock 2 inpatient days to get enough.
Best Wishes
Kevin
Hello Amme
I was diagnosed in 2006. I am now 61. Since then I have had two relapses. My initial treatment was CDT followed by a SCT the on my first relapse another course of CDT and another SCT. Each treatment gave me about 4!/2 years remission. My last relapse was at the end of 2017. I had a course of Carfilzomib and dexamethasone and currently on a maintenance dose of the same until this November. The initial course left my paraproteins undetectable which they still are. I have a good relationship with my Consultant and have always followed His medical advice. We have know each other a while now ! Best wishes with whatever decision you make.
Kevin
Hello Chloe
Yes the ‘maintenance’ treatment is carfilzomib but the treatment is only once a week in 3 of the 4 weeks cycle instead of twice. and also a smaller dose. Regards the initial treat the usual is I think with cyclophosphamide but my consultant decided to go ahead without it. Not sure the medical reason but it worked for me and was one less drug.
Best wishes to you and Mum
Kevin
Hello Chloe
Yes I did have a second SCT after my second CDT. I think the Consultants look at the individual and assess whether they feel that the person can physically cope with the SCT. I relapsed for the second time at the end of 2018. I started carfilzomib and dex in January 2018. The treatment was to be 8 cycles followed by 10 cycles of ‘maintenance’. After 6 cycles my Consultant decided that would be it as my condition had plateaued and the paraproteins were undetectable. I then started the maintenance cycle which I have 2 more to go and should finish in April. As carfilzomib is a targeted treatment there seems fewer side effects. The main one for me has been the tiredness / lethargy but that is not major in the scheme of things. I suffer with back pain as a result of the initial damage caused and think possibly the carfilzomib is making that worse at the moment as back pain can be one of the side effects. I am sure in a couple of months or so when I have finished treatment and it is out of my body things will return to as they were.
As you say Mum is otherwise fit and healthy this should be a great help.
David describes it very well calling it a marathon not a sprint.
Best wishes to you and Mum.
Kevin
Hello Chloe
As you say it is very individual even for the individual. I am currently on a maintenance cycle after 3rd line treatment. Diagnosed in 2006 I have been lucky to have about 4 years with each remission. My first treatment was CDT followed by SCT. This worked well and was quite tolerable. On my first relapse my Consultant wanted to try something different. I asked if I could try the same again as it had worked and I had tolerated it well. He agreed saying if it didn’t work we could swap. It did work again however the side effects this time were worse which I didn’t expect having the same treatment. Again I got about another 4 years remission. My 3rd line was carfilzomib which has led to none detectable paraproteins. Have 2 more maintenance cycles left. You cant really say this or that will work. I have faith in my Consultant and who as others do consider the best treatment for your current state of health, fitness and age. Mine has done a great job keeping me going. Not sure whether this helps but am quite happy to answer any other questions you have.
Best wishes to you and Mum
Kevin
Hello Patricia
I was diagnosed in 2006 and since then have had two courses of CTD each followed by a SCT. I am now having Carfilzomib maintenance treatment which was preceded by carfilzomib treatment. Treatments for and the its effects are very individual so therefore feel choices have to be finally down to you and your consultant.
In my case each CDT and SCT gave me about 5 years full remission. Even though both the treatments were the same the effects for each were different. One was ok the other not quite as good. Both were tolerable to achieve the results I got.
My current treatment which will not end with a SCT has resulted in my paraproteins being undetectable. So looking good.
Best wishes
Kevin
Hello Paul,
My wife was with me at diagnosis. She has been to nearly every appointment which does help as there is generally a lot to take in. Thought I was going to be told I needed a back op then hit with this. Had never heard of it. Yes I am retired. I couldn’t have asked for more help from work and colleagues when diagnosed. They were marvellous. Worked until about 2/3 into the treatment until the fatigue became too much.Had never been off sick before. Before all this I had planned to take early retirement and had been given a prognosis of 50 50 five years.So had a good think about it and decided to bring it forward. That was a decision I now regret as I didn’t realise how much I would miss it. Again the decision can also depend on how well you are in remission and the type of work you do. Initial prognosis I was told was 50 50 five years. I remember at the time not being too worried as I was sure I could beat it. I have been lucky in that every treatment option has worked but if they hadn’t there was always something else to try and I think that applies even more so today.
Best wishes
Kevin
Hello Paul,
Sorry I don’t know the stage but the diagnosis was. 1gG Kappa Myeloma with spinal lytic lesions. Will try and find some early letters and see if it says on there and let you know. As you see I have taken very little interest in the disease and for me this helps coping. I think I had my back pain for at least 6 months before diagnosis. regarding bones I was put on clodronate for the first few years and am now on Adcal. These help to strengthen the bones.The initial treatment I had was CDT followed by a SCT. The treatment wasn’t too bad and the SCT wasn’t too bad. The 1st relapse my consultant wanted to try something different but I asked could I have the same again as it had worked well with few side effects. He ok’d it saying we could change if it didn’t work. It did work. This was again followed by another SCT. Although I achieved another full remission the treatment and the SCT were worse than the first time – but doable. So not only is everyone different the ‘same’ person can react differently. I started my 3rd treatment in January 2018 which was 8 cycles (only had 6) of carfilzomib and dexamethasone with accompanying side effect medication with paraproteins becoming undetectable. This I think is a relatively new targeted treatment. I am now on a maintenance course for 10 cycles of the same but half the dose.
Before diagnosis the pain was quite bad but eased during treatment. The pain now does vary but only have to take painkillers when necessary. I still do almost the same things as I did before diagnosis but have to give it a little more thought.
My attitude is that it has had a go at me 3 times now and I have beaten it so if it fancies another try I’ll beat it again.
Hope this helps. Quite happy to answer any questions you have but as I say I don’t know a lot of technical details and numbers about my journey.
Best wishes
Kevin
Hello Paul
I don’t know to much about the ins and outs of the disease and the only figure I ask about is my paraprotein level. I found it quite daunting at the beginning with the diagnosis, appointments and treatments but once everything settled down it felt a little easier. Like you I was diagnosed at 48 and has as been said there has been a lot of advances in treatment with more in the pipeline. I am now 60 and just short of 12 years since diagnosis. In that time I have had 2 relapses both about 5 years apart and have just finished my 3rd treatment and am on about 10 months of maintenance treatment. Each time I have achieved a full remission. I hope this helps a little.
Best Wishes
Kevin
Hello
I also meant to say you might find it helpful to get in touch with the nurses at Myeloma UK and ask them.
Regards
Kevin