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dickb 11 years, 4 months ago.
Hi, I am just wondering if anyone has been told by consultants etc that if you get myloema at a younger age than expected – say 50ish and under(I was told average age is 70 to get it) then it is more likely to be much more aggressive because it has started early? Rebecca
Hi Rebecca.
I'm 38 and was diagnosed at 35 but haven't heard that one before. I think that it is individual and is probably more to do with your genes than your age as to what impact it has on your body. But I don't know for definite. Have you tried asking the Myeloma Infoline?
I'm not sure if you're asking for you or someone else, or whether this helps, but my myeloma (crossed fingers) doesn't seem to be aggressive so I hope to get a long time of remission from the transplant I had nearly 2 years ago.
Debs x
Hi Debs, thanks for that – it was for me (51) and just soemthing an elderly lady on velcade said to me at the clinic – she'd never had SCT due to age but had chemo then 10 yrs in remission then abit of velcade which gave her 2 1/2yrs and now she's just starting another batch of velcade as its raised its head again.I wouldn't mind following her down that route! her daughter had told her a lot younger people were now getting it and suggested it was more aggressive. I haven't had any genetic profile from my consulant re. extra chromosomes or high risk translocations etc – never know whether to ask or stay in the dark – as I know they can guestimate remission from such proiling – am assuming they will do it at some stage? they seem to do it automatically in USA etc where they have more of an individual approach to treatment. Did you get a genetic profile pre SCT? Rebecca
Hi Rebecca
Seems to be the luck of the draw , lots of people well under 50 have posted on this site , the oldest I remember being 87
An early diagnosis is the best , but unless you have a blood test every three months , very difficult or in my case a routine unconnected blood test found my MM very early on, I had no idea I had a problem , no symptoms
The longer the MM rampages round your body the harder it gets, yet the medical profession seem at times to miss many clues until it has a real hold on you
Not too sure if anyone knows how or why you get MM or why it comes back at totally different time scales
I had an SCT in Jan this year at 70 , still have another dollop of cells in the freezer
Peter
Hi Rebecca
I was diagnosed just over 2 years ago, aged 42. My consultant recently told me that 'generally' as 'with all cancers', the younger you are, the more aggressive it tends to be. In my case, I had 6 cycles of CTD and achieved a complete response early on and have remained so ever since. I've had my stem cells harvested, but I am waiting to relapse before considering an SCT. I have the added complication of Amyloidosis, which can make an SCT more tricky and I have relied on this factor to push back on an SCT when I was told a year ago that 'the myeloma clone should be making a reappearance about now''.
I had to get very assertive, though. I didn't have a cytogenetic test on diagnosis, but was given one AFTER treatment when I had a second BMB. That came out normal and therefore, they were unable to get a result for any abnormal chromosomes, but of course, that doesn't mean I don't have any.
Tracey x
Hi Rebecca, my Mum has been told that she has the more aggressive form of myeloma and she is 76 now, just finished her first chemo cycle, due to see the Consultant next week re the next cycle i guess, sadly she is not eating hardly at all just drinking a little and now back on a drip in hospital, it all seems up in the air at the moment, hope that you are ok?, best wishes San.
Sorry to hear about your mum but as I'm sure you're aware everyone reacts differently to the disease and i have read posts where someone was diagnosed with aggressive stage 3 myloema and has achieved a 10yr + long remission – the individuality of it all means there is always hope but I know its difficult to remain positive when we literally face the "unknown". I am sure your mum will pick up soon. Take care, Rebecca
Hi Rebecca, I was diagnosed just after my 41st birthday a year and a half ago, I had x6 CDT and I had a stem cell transplant last June. Im about to head off on my 1st holiday abroad since then and life is great 😀 My consultant has always suggested that being younger and fitter is a bonus as opposed to being diagnosed later in life. I've never heard or read anything to say it could be more aggressive if diagnosed at a younger age. I want many many more years of remission yet and fully intend to. Stay strong Rebbeca. Best wishes.x
Hi Rebecca, as far as my understanding and research goes, it depends on genetics rather than age as to whether your myeloma is counted or diagnosed as 'aggressive'.
My consultant at UCLH actually told me that the younger you are, the better your prognosis, and that's backed up by the statistics that I've found.
I'm 47 and was diagnosed with plascmacytoma around 18 months ago that has since developed into full MM.
I'm having PAD in the lead up to an SCT.
Rebecca
I think the person who told you that was talking about all cancers,
For example myeloma if caught early there is less damage to bones nothing to do with age,but a younger person is fitter and healthy than a 70. Year old.
My husband is 69 this year used to be very fit ,so was able to have SCT but at his age will not be offered another I guess!!!
Bones weaken with age so when Myeloma causes extra damage the outlook is poor compared to a younger person,So I would agree with the others the younger person has a better out look..Eve
Hi – thanks everyone for all your views – does put things into a better perspective – but would rather have been diagnosed at 70 than 51 regardless of fitness etc. Am currently on 5th cycle of dex/velcade with a view to SCT but now they are in doubt if this can happen as I only have 17% kidneys (but no bone damage) so options getting shorter if this is the case… Rebecca
Hi Rebecca.
I was told when I was diagnosed in Oct 2011 aged 51 that due my age, classed as young 😀 , and due to being fit, I ran marathons, I was lucky because they could attack my MM aggressively and get me to SCT quickly. Well here I am 18 months later after having everything but the kitchen sink thrown at my MM with my PP's still hovering around the 20's. SCT has now being almost ruled out for me. AutoSCT because my bone marrow is too battered to produce the required cells and AlloSct due to no suitable donor found to match me. I was referred onto Prof. Jackson, a national expert, and he said I had an aggressive form of MM and even if I did get to SCT the outcome may not be good. So I'm stuck with the drugs and I've been through most of them and they haven't been very successful.
I have bad bone damage to my spine with an op due in June. Having said all that I am feeling ok probably as good as any time since diagnosis and have been on my latest regime a year – RCD that is.
Now that's my tale of woe but I'm not typical I don't know of many on this site who have been so resistant to treatment as I have been. Everyone's journey is different some fly through to SCT but unfortunately quickly relapse others get to SCT and have fantastic results and long remissions. Everything to do with MM is a lottery though it seems the vast majority do manage to get to SCT. Some people manage quite well without SCT too.
My conclusion after a long Dex fuelled ramble is the younger and fitter you are the more aggressively they can attack the myeloma and hopefully eradicate it. This all depends though on the damage been done before diagnosis.
Newbies reading this post I must stress as far as I know I'm very untypical and although myeloma is at present not classed as curable it is very treatable and treatment is getting better all the time with new and better drugs.
All the best in your journey with MM Rebecca.
Every days a gift
Andy xx
Hi Rebecca
I'm a bit like you not sure if I want to know the answer re my diagnosis in case it's what I fear most!!! However what I have learnt is mm is not predictable and even the scientists are not 100% clear. Sometimes best not to stay in the dark as your thoughts / imagination can become even darker.
I ave heard that mm can be more aggressive for younger patients I was 45 when 1st diagnosed so that message scared me silly – I've noticed lately that a lot of mm patents are saying their mm is aggressive????
Best wishes dawn x
I agree being younger and fitter has had it's advantages – I too go for it by going on holidays xxx
Hi Rebecca
Sorry to have you join us, but as you see, you will get lots of support here whatever your MM journey brings.
Don't despair if you can't go down the SCT route. There are several of us on here who haven't, for a variety of reasons. Me, because I wouldn't chose to. I was diagnosed over two and a half years ago, managed to put off drug treatment (CDT) till last March and have been in full remission for about a year. I'm hoping for many more.
Myself I think attitude helps a lot so keep strong, travel hopefully and make the most of each day. I have just been on my first foreign holiday for three years because of bone damage so never give up!
Lots of love for your treatment's success.
Mavis
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