I was diagnosed with kappa light chain myeloma approximately a year ago. I have been told that my illness is ‘treatable but not curable’ and would like to know, in general how the cancer will develop over time, how my health will deteriorate and ultimately cause my death and what the general timescales involved are?
I understand that my life expectancy will be extended by having a stem cell transplant, but I am not sure by how long. I am currently awaiting a second stem cell harvest, my first harvest being unsuccessful.
I also am aware that quality of life and life expectancy are quite specific to age, health etc. but what I am looking for is a general guide as to what might be the key milestones of my illness?
I have asked my doctors this question, but I have not received a suitable answer. All I have been told so far is ‘some patients live for up to 10 years’ and ‘infection will most likely cause death’. What I am looking for is a timeline with key milestones of the illness.
I am 53 and was previously fit and healthy. Many thanks in advance for any advice that can be given.
Hi @andyevs a great big welcome to our forum and you ask such logical questions that your doctors have not been able to give you definitive answers to.
Personally, I have a different diagnosis, but I have found that pre-diagnosis I sort of had my life mapped out.
I was married with a son and full-time job.
I foresaw that we would celebrate key anniversaries together, our son would go to university, get a good, well-paid job, get married and have children.
Well, I am still married, our son has a manual, poorly paid, job, at 47yrs is not married and does not have any children (that I know of!!).
I was diagnosed at 53yrs, the same as you, and was given a 5-10 yrs life expectancy.
That was 18yrs ago and in that time treatments and trials have come on leaps and bounds. Life is good and my 70th birthday was my best birthday ever.
I was also told infections could get me or I could get run over by a bus.
Yes, most blood cancers are treatable and not curable.
We are all special unique human beings with our own medical histories.
I am now content living with the not knowing what will happen in the future and that makes me make the most of today.
However, when I was diagnosed, I felt completely the same as you for a long time, it is completely natural.
Actually, I did not have those assurances before diagnosis, I just thought I had.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
Take it steady and look after yourself.
I look forward to hearing more about you
I was diagnosed with myeloma in 2017 at 49
I had severe bony damage, renal impairment immune suppression and blood count abnormalities
I had a tumour on my T9 (spine) which fractured
I had high dose chemo followed by my first stem cell transplant as that was the best way to get a response
I had trouble getting stem cell collection on just GCSF and had two plerixafor which gave me enough stem cells for two transplants
I had a good partial response in 2017 to that transplant and relapsed in Oct 21 and had chemo and a second transplant in April this year
Myeloma is a relapse remit cancer so you will have periods of time where the myeloma isn’t doing any damage
Myeloma is very individual in the way it affects us
I have a very good response this time to my transplant and I’m on maintenance chemo to keep the transplant working until my next relapse which we don’t know when that will be
As for timescales it depends I guess on how you respond to treatment and your myeloma
In 2017 I was high risk and potentially had 6months if I didn’t respond to the high dose chemo which thankfully I did
Hello there @andyevs
Thank you for your post and I am sure you continue to get support from the forum members here and will gain knowledge from their lived expertise.
I am sorry you haven’t been able to gain an answer from your team, may I ask whether you have a Nurse Specialist who you can ask for further clarification? It may be worth requesting another appointment with your Consultant regarding your questions. When considering the remission length after Stem Cell Transplant I would advise talking to the Transplant team who are in charge of your care as they will have some guidance for you.
The main issues to consider when discussing prognosis with you team are:
Response to treatment
Toleration of treatment - side effects
Length of remission
Age and general health
There are many treatment options for Myeloma – all aiming for a period of time when there are no signs of myeloma (remission), or when the paraprotein or light chain levels in the blood are lower and stay lower (a plateau, or stable disease phase).
Treatment options also include Clincal Trials which I have added some information for here: Clinical trials and novel drugs - Myeloma UK
I do hope this helps and if you would like to talk things through please do give us a call: Blood cancer information and support by phone and email | Blood Cancer UK
Treatable but not curable shouldn’t be mixed up with terminal as it means it can’t be cured but you may well end up expiring from something else.Generally the higher the stage the more likely you are to die from the cancer itself.The one I have, Mycosis Fungoides a non Hodgkin’s T cell lymphoma,is treatable but not curable and at stage 1a most people die from something unrelated but by 2b to 4b, sounds like Shakespeare!,most people end up dying from the lymphoma and the infections it causes but it still might take years although not generally at 4b because by then it’s comprised the internal organs which is obviously very bad.
Andy as others have said Myeloma is very individual and I think it is impossible to give definitive answers to your questions. I was diagnosed at 54 and like you was until there fit and healthy. I was a keen cyclist had always done exercise, slim and never smoked and only drank the odd glass of wine. I had light chain Myeloma too. I had a stem cell transplant in 2007 and amazingly have been in remission since. As Erica says she just enjoys each day and I try not to think about the future as who can predict it and I have been fortunate to have a very good life and just enjoy the things I can do.
Hi @andyevs I’ve been thinking about you, and I wondered if you have an update at all.
Look after yourself
Hi @andyevs I was diagnosed with Multiple Myeloma at 49 and told that the typical life expectancy is 4-7 years. Well I’ve had it about 5 years now and I’ve mostly been fine once I had all of my treatment. I don’t think it’s an exact science. I’ve met lots of people with Myeloma who are still here after 20 years. It will rear it’s ugly head from time to time and you’ll have to go through the whole treatment cycle again as I will but there’s no reason to assume that you’ll follow the stated life expectancy. If anything your age will be an advantage as will mine as the average age of a Myeloma sufferer is 70 and this may skew the figures somewhat as a lot of older people may die of things they may have died of anyway regardless of the Myeloma. I tend to find it’s best not to dwell on that aspect of things and make the most of things and enjoy life and that philosophy has served me well over the last 5 years.
Are you on Instagram
If so there are some great guys living with myeloma which may give you some inspiration.
They have documented their journeys too.
Hi,how would you find them on Instagram?
Offer a range of support groups across the country for those affected by this type of blood cancer it might be worth checking it out for some of you
Take care all
Many thanks for all the replies and advice.
I have now spoken to my stem cell transplant team, who have advised me that the transplant will add 2 years to my lifespan. I have previously spoken to my Haematology Dr. who advised me that patients such as me can live between 5 and up to 10 years in some exceptional cases.
I am guessing that the extra stem cell transplant years are included within the latter figures.
So I think I will plan my life expectancy on the figures above, as the team looking after my condition are aware of all the effects of my multiple myeloma and the complex side effects of the chemo i have received.
I would be interested to know what effects other multiple myeloma sufferers have experienced, as to me mine seem quite severe and also deduce this from speaking to the above teams?
Also would this question be better as a new post?
Hi @andyevs it looks to me as if your post is fine where it is.
Unfortunately I cannot answer your question and I await the thoughts of others.
Don’t forget that we are all very special unique beings with individual medical histories and life expectancy is definitely not an exact science.
Perhaps making the most of each day is an idea.
Look after yourself and please keep posting
Could I ask for a bit of specifics as it’s difficult to respond not knowing what the questions/thoughts/severities are
Myeloma is very individual what works for one maybe different to another
@2DB I was actually answering the original question in my first post, in relation to life expectancy, which I now understand is quite specific.
I do not know any Multiple Myeloma sufferers and I have only had 2 conversations with fellow sufferers whilst undertaking stem cell harvests. From these and from what my Doctors have told me I get the impression that my condition is severe. However I could be wrong due to my limited knowledge of the condition.
I have experienced the following symptoms:
Partial paralysis of 1 arm
Loss of central vision
Full paralysis of both hands
Nerve damage in both hands
General loss of mobility / balance
*some of these symptoms have improved with physiotherapy etc.
I would be interested to know what other Multiple Myeloma sufferers have experienced?
Do you know what type of myeloma you have if no ask your consultant what type of myeloma you have
I have IGGK light chain with bony disease no chromosomal issues
I tumour on T9
My dear friend had IggM with a 1q gain and t4-14 with soft tissue plasmacytomas (this is pretty rare with 1% of sufferers)
Spinal cord compression with some of the symptoms you listed
Kappa light chain myeloma is what I have been told I have