I am fairly new to this forum as have been recently diagnosed and understand the condition.
I am fairly positive and in good state of mind but I would like to know what is the average life span for a person with this condition?
I know that age and all other things matter so it’s not a definite answer but would like to know .
Thank you all
Welcome to our forum. I’m really pleased you have reached out as I’m sure you be scooped up and given lots of great support here by others who have their own experiences of Myeloma.
I’m really sorry to hear about your diagnosis. How are you feeling and coping with it all?
As you have likely read, Myeloma is a blood cancer that cannot be cured but can be treated. It has many treatment options available to those who may need it. A person with Myeloma may follow a pattern of relapsing- remitting and therefore might require treatment at different stages in their life. Our webpage talks more about this here.
It is really understandable to want to know more about your individual prognosis and the best way to do so is to direct these questions to your haematology team as they are best placed to discuss your level of risk. We appreciate how frightening internet information & statistics may seem when looking at outcomes or prognosis around Myeloma therefore it is really important to remember that this can be very generalised information and will not reflect ‘your myeloma’. In case it is useful, I have linked here to our information around this- Myeloma prognosis | Blood Cancer UK.
Please do also know that if you ever would like to talk things through with us, our support line is always on hand- Blood cancer information and support by phone and email | Blood Cancer UK.
Take good care, Lauran
I have been living with myeloma for 7 years
There are many others that are 20 years into their myeloma journey
As you noted many factors influence the years you live with myeloma. Genetics are a risk factor that influence how you respond to treatment and how soon a relapse could happen
Myeloma is not curable but very treatable with new treatments coming along regularly
I had initial treatment and stem cell transplant 2017
Relapsed in 2021 had second Stem cell transplant and on maintenance chemo until my myeloma stops responding
I am aware my second transplant may not last as long as my first
When I was diagnosed and not responding to my first chemo regime after 7 weeks I was given 6 months if I failed to respond to the next one
Thankfully I did respond to a salvage chemo and got my first transplant
So yes many many factors influence myeloma
Are you able to work and live a relatively normal life?
At the moment I have given 3 months SSP at work so I can get along with my treatment but I was wondering after a successful treatment if you can go back to work?
Hi @Pmg I am so glad you have posted on here and I can really understand you wanting the answers to your questions.
You have had brilliant responses so I will answer your post differently.
I have another blood cancer and my prognosis was 5-10 years and I am still here 20 yrs later.
I suppose, after a lot of years, I have realised that all anyone in this world has is the here and now.
Before my diagnosis I had my life mapped out, my son would leave home, get married and have a family. ( 20 yrs later and he has just had his 50th birthday and has never
I would finish my career and do lots of enjoyable things in my retirement.
I aspired to a bigger house and better car.
I am far less materialistic now and I have just enough and I am happy.
I hope others will shall their own experiences.
The other thing is that research and trials are coming on by leaps and bounds, so new treatments are coming on line frequently.
The main thing is that you really look after yourself and please do keep posting as I look forward to hearing more about you.
Yes many people live a “normal myeloma life”
Your now classed as disabled with a cancer diagnosis and if you need any adjustments at work you can ask for them
Some people work through their treatment
You may find you get tired quickly and fatigue can be part of this journey.
Some of the newer treatments are more tolerable as well.
I took time off work in 2017 as I was quite poorly through my chemo and stem cell transplant I did return to work in 2018 with adjustments I was very very careful around anyone who was poorly with coughs colds etc and would only go to certain coffee shops and struck up friendships with them so they were aware of my reasoning for wanting take away cups.
Then covid came along and I continue to shield since my first relapse was during covid and I’m permanently immunocompromised and I had my last stem cell transplant and looking after it for as long as I can
I’m living my best life since covid
I personally risk assess everything
I did return work when shielding paused with adjustments until my relapse and took time off through treatment
I did early starts as I got tired by lunch time
I worked with minimum amount of people
Myeloma is individual to each person
See how you feel and go from there
I can see you have had some excellent replies already which I hope have helped you feel a little better about things.
It’s hard isn’t it when you get a diagnosis. So many questions we want answered.
Please keep posting on how you are doing x
I have so much positive replies from you all and it helps me everyday to understand the condition more!
There is a lot to take in atm however this forum helps me a lot. My 1st chemotherapy starts on 2nd February and I won’t lie, I am a bit apprehensive. It’s amazing how quickly my condition progressed in just three to four months!
Four months ago, I was quite a fit person running up and down the stairs working as a dental nurse and then suddenly started to feel tired and had difficulty climbing and was out of breath climbing stairs!
My diagnosis came about when I went for my routine diabetic blood test and they found out my HB was very low 7.6 ( explains my struggle with stairs) and they found high paraproteins in my blood! From there onwards, everything was fairly quick from MRI and bone marrow biopsy to my consultation and diagnosis!
I am off work now till who knows due to the kind of work I do as a dental nurse involves infection and contact viruses.
Do you know what chemotherapy you will be starting?
As a dental nurse you will be at risk of infections covid etc so that’s good you’re taking some time off.
Could you do any office based work rather than be around patients or anything you could do from home?
My diagnosis came after a gall bladder infection and a couple of weekend stays in A&E and investigations and referral to haematology 6 weeks later
I went to the appointment on a Wednesday confirmed I had myeloma had bone marrow biopsy there and then CT scan following Tuesday another BMB on the Wednesday started chemo on the Friday
I was not in a good way my kidneys were on verge of collapse as I had severe boney damage and the calcium is filtered through them, I was very anemic and had 75% myeloma cells in my bone marrow and severe immune suppression
My myeloma had been active for at least 6-8 months before being found.
I was also very tired after my shifts and would fall asleep in my car in the car park and I was addicted to ice cubes ( which I have since found out can be caused by anemia)
I put it down to I could be menopausal at that time little did I know how poorly I was.
So I was lucky in the way that my organs are all ok. Just the low HB and bone pain mostly pelvic region.
I can’t really work from home coz of what I
do professionally however eventually as an when I can work o will be looking to work from home.
The chemotherapy I will be is DVDT
It sounds like your myeloma has been caught in good time and thankfully through your routine bloods.
Daratumumab has given me great results after my relapse I’m in a very good partial response
PP and light chains less than 2 and my overall bloods for me are good too. The best they have been since diagnosis
The combination has also worked well for a close family friend in 6 cycles they have achieved good results too.
I can imagine you are apprehensive - it’s a big deal isn’t it.
I agree that it’s good you have some time off work.
Please keep us updated on how you are doing x
Sounds like things are good with you at the moment @2DB which is good to hear
Thank you all! It’s so nice to know that there is a lot of support . Friend and family have been so supportive and helpful and it makes you think that without support this condition can really bring you down! Talking about it helps a lot as well. This forum helps in knowing what other people have been through so thank you all
My recent update is that I will have to have a blood transfusion before I go in for treatment.
Will keep you guys updated! On the other hand my spirits are still high and not yet daunted in any way! We will see
Oh @Pmg you make sure you keep us updated and I have found this forum is a really good place to say how it really is for me.
It is the unknown that scares me.
Be kind to yourself and keep posting.