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Hi all,
I have recently been diagnosed at the age of 27. I have been told that having a transplant is a potential ‘cure’, however from doing my own research I’ve found that this is intact not a cute and just another method or prolonging a relapse. Has anyone had a transplant and has relapsed?
Life expectancy is also another worry. Just how long is the average life expectancy for someone my age? – I’m currently not on any treatment and just monitoring bloods for the ‘right time’ to start treatment.
Is there also any people on here that’s at a similar age to myself going through this?
Would be good to listen to peoples experiences of dealing with myeloma so I know what to look out for and the best ways to keep myself healthy for as long as possible!
Hi danjwoz,
sorry to hear about your diagnosis especially at a young age. I’m twice your age and was diagnosed 2 ½ years ago at 52. Which can be considered a young(ish) diagnosis for MM as the average age at diagnosis is early 60s. So I probably can’t help much but I have had 2 transplants in the last year,
The first thing to recognise is tht treatment for MM is developing every year. The survival rates are difficult to unpack as the average age of those surveyed tends to be quite old – which gives a distorted view especially if you’re younger than the average. But without doubt treatment for MM is evolving rapidly and survival rates are significantly higher, and growing each year.
It’s important to make sure your consultant is an MM specialist. MM is quite a niche area so its worth contacting MyelomaUK who can put you in contact with specialists in this area.
And then onto stem cell transplants. Officially there isn’t a cure for MM. The standard treatment, and there is no normal in MM, is induction chemo (to bring it under control) followed by two autologous stem cell transplants – so they take some of your own stems cells out, give you really strong chemo to kill the cancer and then put your stems cells back again. If they do tht twice then the remission tends to be longer. But it will come back.
I had one autologous stem cell transplant followed by an allogeneic stem cell transplant. This is where they use a donor’s stem cells with the objective of creating a new immune system in your body tht identifies and kills the MM. I had tht 11 months ago and I’m still in remission. But its a waiting game, they test you every 6 months and hope it doesn’t come back. So you’re never officially ‘cured’ but people have remained in remission all their lives after an allo.
There’s loads of material available to read up on all this, but MyelomaUk is a really good source of reliable information and above all, talk it through with a myeloma specialist. The main thing to understand is tht MM is now a chronic disease – you will most probably die with it rather than because of it.
Hope tht helps, wishing you the very best of luck!
Shaun
Hi Dan, I was diagnosed with extreamly aggressive high risk Myeloma last year aged 41.
When diagnosed my kidneys were working at less than 15%, my bone marrow biopsy showed 90% cancer cells.
I had 6 rounds of VDT chemo regime and had my stem cell transplant in January.
I was told at my last consultation that upon diagnosis my numbers were at 390,its now at 1.1 normal range is 1!
So for now i am in “remission”.
I am well aware that my cancer is aggressive and it will return.
My team wanted me to have a donor transplant “for a better chance”, i refused.
They then wanted me to undergo a tandem transplant, i refused that also.
I decided that I wanted to give my own stem cell transplant a chance to work.
So far so good.
I wish you all the very best in your Myeloma Journey. Please don’t Google your prognosis, stick to Myeloma uk for the real facts.
Kind wishes, Judith x
Hi was diagnosed 3 years ago at 45 I have since undergone 6 months DVT chemotherapy then a stem cell transplant. I am in remission now have been for 2 years. When diagnosed I felt the same as you, I was terrified, but I googled all the wrong information. I great consultant told me according to the internet you died yesterday and I found this funny. I now only ask Myeloma uk and my consultant questions. I joined the local Myeloma support group but hadn’t wanted to as they were all much older, but it was best thing I did. A lovely lady in it has had myeloma 15 years, another 11 and I recently read an article, where a man had, had it 26 years. I love my holiday abroad and just live a normal life apart from my monthly check ups. I am now much more content with my disease as new treatments are coming through all the time. I still have my ups and downs but its not all bad. I speak to my councillor regularly and she’s great, most of the time we dont discuss my illness. Please get the correct information from the correct places. I wish you well on yr journey. If you get a chance attend a Myeloma Info day
Susan B
You sound like you have done some research so to add to sources mentioned in previous posts I spend most of my time researching in America where the new drugs get approved first an is why as others have rightfully said this is now ( for a lot of us ) a chronic disease with some good new treatments..
On stem cell transplants the attached is a webinar being held on Sept 16th which might be useful
https://event.webcasts.com/starthere.jsp?ei=1346668&tp_key=840e2fb50d
On your search for someone of your own age http://www.Healthtree.org is an amazing resource centre and they have recently added a “find your twin” . You have to enter quite a lot of data whih you might not yet have but they have very helpful people there who can help you – again this is an American site specifically for Myeloma patients and is wy ahead of anything I have found in the UK
The suggestion in the other post that you find yourself a myeloma specialist is very good advice, its a complex and individual condition and can take some time and application to get to grips with, best of luck
I too have registered on healthtree.org which is a patient created database created last year to help myeloma patients to find others with similar types and presentation of myeloma and to help researchers with a ready pool of patient data. In this database there are a number of people who were diagnosed in their 20s almost 30 years ago, and still going.
These people were diagnosed before the major breakthrough treatments of thalidomide/velcade and bortezomib were available, which truly have been game changers in terms of life expectancy.
Added to this there are significant newer treatments available now, and plenty of ongoing research so there are likely to be new routes of treatment available such as CAR-t cell therapy, BiTE etc by the time you might need them. Myeloma is not yet curable in the UK, and allogenic transplantation is too risky for most myeloma patients as the mortality risk sharply increases with age, but it has provided seemingly unending remissions for some younger patients. Survival statistics seem to be up in the air at the moment, patients having maintenance after autologous stem cell transplants for example are living so long that survival benefit statistics are not yet available. Researchers who used to use overall survival as an end point in studies are now using progression free survival as patients are living longer.
Much more research is needed into the chromosomal changes that cause myeloma, but it’s already known that young people even in the days before current treatments, have lived much longer than middle aged people, who not surprisingly have tended to live longer than elderly patients who are more likely to have comorbidities.
A myeloma diagnosis is profoundly shocking at any age, and even more so for a young adult. However the diagnosis has also helped me to appreciate the important things in life and to grasp all opportunities (leastways before Covid), and I hope that it does the same for you.
If you are interested in the scientific side of myeloma I find an online group called Smartpatients (which has a myeloma subgroup) has some very interesting threads. Welcome to this group we all find ourselves unwilling participants in.
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