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7 weeks ago my fiance was diagnosed with multiple myeloma or at least it was the day we found out that he had a form of cancer after several months of going back and forth to the GP about a back problem he had. Needless to say since he is now in a molded back brace (with a pending collapse of a lower supporting vertebra (legion clear as day) and started Chemo 3 weeks ago (on a clinical trial). Apart from the obvious and still not believing what has happened we are dealing with it as it comes.
But my question for now is what is the youngest age that anyone on this forum has been diagnosed at and how long ago was that – I know medications are prolonging lives considerably from before, buy my significant other is only 39, and why are some blood cancers curable yet others not (understanding that you cannot predict a mutation of a gene happening)?
Hi I am so sorry to hear your news..can I ask what chemo regime he is on and I would be interested as to what clinical trial he is on please.
I started my own chemo yesterday with VTD and I was told that I could not go onto clinical trials at this stage.
In answer to your question about age, I asked this same question at the hospital yesterday whilst I had velcade injection and I was told they have patients at the moment ranging from 40 -65.
I am 55 and I was diagnosed 4 years ago with smouldering Myeloma.
Very best wishes for the future journey and just try and take 1 step at a time so I’ve been told.
Dawn x
Hi Dawn,
He is being treated at the UCLH (Guess we couldn’t ask for a better place) while they have 10+ trials going on his in on the Cardamon Trial (Carfilomib) – Chemo Twice a week (IV line – Wed & Thu) third week today. It consists of 4 monthly cycles 3 weeks chemo / 1 week off after the 4th cycle i believe he gets a month off and they harvest his stem cells its then a flip of the coin (randomization) as to what group he is then put into e.g either another 4 cycles of chemo or he has the stem cell transplant, after that he is then on 18 months maintenance of weekly chemo dosages. So in all 2 – 2.5 yrs worth of ongoing treatment.
They offered him the trial straight away while they were still carrying out the tests giving him the option of standard treatment (Velcade), he’s been through the mill already visited an excess of 7 hospitals and seen god knows how many specialists to date.
I only hope that being young and strong is a positive towards him though its a considerable difference already since the day he was told and his physical abilities.
Hi Sabs,
Very sorry to hear about your fiancé and I hope that the treatment starts getting things in shape very soon.
I was 36 when diagnosed (just over 2 years ago). I am fairly regularly told I was young to get myeloma but I have come across someone who was 31 so I am certainly not the youngest. The incurable aspect of myeloma is pretty hard to take at any age I reckon, but I take solace in the fact that it can be very treatable. I have come across people of a younger age than myself with other blood cancers who have not been so lucky. And the word “cured” can be a moot point anyway – I think in some other cancers you are classed as “cured” if there is no sign of disease 5 years post-transplant. And I know many people who would fall into that bracket who have myeloma. I guess the differential is that there is more groundswell of evidence that things don’t come back with other cancers, but probably less people who fall into that bracket with myeloma.
Wishing you both all the very best,
Greg
Hi Sabs
I have read of patients getting myeloma in their 20’s in an American forum. It would appear that patients are being diagnosed younger and younger as 15-20 years ago this was considered an older patients disease (65-75) , and I suspect that that is the reason for OS at that time being so poor. Of course today there are the novel agents which were not available 10 years ago, which have improved patients survival. I do know that in younger patients allogeneic (donor stem cell) transplants are offered and I believe this comes with a small chance of cure, but the risks of mortality are hugely increased when compared with autologous (own stem cell) transplants. In addition the graft vs host disease which can occur after an allogeneic transplant can be life threatening. This is a bloody awful disease and the treatments are equally awful. I always say I am a statistic of one as no ones biology is the same and we all react differently to treatments. My advice would be to research as much as you can regarding myeloma. It’s a complex and individual disease.
kind regards
Hi Sabs
very sorry to read that your fiancée has been diagnosed with myeloma. I just want to reassure you that whilst it is a very worrying time at initial diagnosis, there are those of us out there (like myself!) who have been living with the disease for a number of years, and whilst not complacent, I live with optimism for the future.
For summary, I was diagnosed aged 33 with an extramedullary plasmacytoma and 10% bone marrow infiltration. That was 4 years ago. My initial treatment plan was two cycles DT-PACE then an autologus stem cell transplant followed by 2 year maintenance. I achieved remission after one year of treatment and have been on maintenance now for for nearly 3 years. The treatment is tolerable and I receive it fortnightly. I generally feel okay and work and live a normal life.
Despite the diagnosis, I have got married, and am having a baby shortly. I am optimistic for the future and genuinely believe, with some luck, I can go on. There are ever more treatments, and the survival rate is improving all the time.
Good luck.
Thank you everyone, I guess the biggest issues to date for someone like me is the not knowing, everyone is individual and there is nothing standard about how someone will react to the treatments given or for how long. We had false hope in the early days whereby they turned around and said that there was a 40% possibility that it was Plasmacytoma and potentially curable but they still thought 60% outlook was MM which it was. But reading beetlejuice54321’s comment I’m left wondering if there is something more to his diagnosis – they wanted to redo a biopsy (we declined) because the soft tissue sample came back clear – they took a big sample to cover the trial / standard treatment and a bit extra for general testing. I guess I will have more questions for them come cycle 2 when we see the Dr.
I just want to know that he is on the mend both his back and the cancer, and the thought of a year or more to see if he goes into remission is agonising. I just want him back to normal and then we take it from there monitoring him and wait for the dreaded relapse day.
But there are already a few positive signs – his vertebrae though two thirds of it is damaged by the MM, is actually being pinned up by new bone growth – though not unusual I still find it very perplexing that solid new bone growth down the vertebrae has occurred while the MM is destroying the bone density itself (still no valid reason as to why that can happen as of yet) so for now no operation is required and fingers crossed it can heal itself and within a reasonable time frame as right now he is very limited in his activities which is soul destroying to watch.
Hi
I was 47 when diagnosed with my unwanted tenant in October 2013.. I have just had my second stem cell transplant at Christmas and I am enjoying my med free remission for how ever long it lasts..if there’s anything that i have learnt from this little blip in my health is to get on living as normal as can be in the remission time and don’t think about the relapse (as hard as that can be sometimes)..it will come back as we all know… but who knows what they might find in the near future with their ongoing research to help us evict our noisy unwanted tenants for good…
Keep as positive as you can with each day walking along the path of myeloma…it will twist and turn but be as strong as you can….it’s not all hills on this path there are also gentle slopes to stop and take time to enjoy the view x
Much love to you all
Mick
Thanks Mick, that is definitely one way to look at it, this week was much better compared to the previous two weeks of chemo, this i am sure will calm down I just cant wait to get back to some form or normality.
Sab’s x
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