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Hello everyone. I was diagnosed with smouldering myeloma four years ago. This week they told me it has become active and I need to have treatment.
While I knew it was possible and likely I had kind of banked on it not happening, so it’s all been a shock.
Two weeks ago I felt fine: I was cycling 50-60 miles a week and feeling ok. Ever since the phone rang to rush me through the system I have been aching and feeling lousy. I can only think it’s a combination of pain from the biopsy and the psychosomatic power of the brain.
I am scared and worried but also trying to be positive and take each stage as it comes. The consultant said I have “high risk genetics” but also said that was no reason to think treatment won’t work.
I suppose I am reaching out to hear stories of hope. While I am trying to be positive – well it’s hard! I’m 53 and I wannt to be around for a fair bit longer, really.
Any support most welcome.
Mark
Hi Mark,
I’m sorry to hear tht your MM is now active. I was diagnosed two years ago at 53 and since then I’ve had two stem cell transplants. I’m one year post allogeneic stem cell transplant and currently I’m MRD negative (no sign of disease). I’m not high risk but my treatment (allogeneic stem cell transplant) is an option for high risk. So the treatment does work. Staying fit, I cycle too, and positive is really important. So stay strong buddy – we’ll get through this. Very happy to talk more by email if tht would help.
Shaun
Thanks so much Shaun, really appreciate your message and good to hear you are doing well. Would love to talk more by email if you are up for that….I’m mark.davies67@gmail.com
Hi Mark
My wife was diagnosed 6 years ago aged 48. Like you it was a watch and wait then treatment 18 months later. Again like you, high risk genetics, but her first stem cell transplant lasted 3 years. Three years of no treatment, and living life to the full. She has just finished her 2nd cycle of treatment and ready to press the accelerator again, well as much as possible in a Covid world!
Good luck with your journey.
Graham
Hello,
I was diagnosed at 56 in January 2017, although they think I may have had it for a couple of years as smouldering, so I went straight onto treatment. Like you I was very fit at the time and had just been feeling a little tired. I was diagnosed because my right eye appeared to have something wrong with it; it turned out to be a tumour (lymphoma) behind my right eye. I was referred to Haematology and they did the indepth blood tests, bone marrow biopsy and PET scan. It turned out that I only had the one lymphoma but I also had Myeloma, a double whammy! I had radiotherapy for the eye to shrink the tumour then they started treatment for the Myeloma. I had three different lots of intitial treatment, none of which worked so they did the genetics test (not routine in my area) but that didn’t show anything. They then got an expert pathologist to go through bloods and bone marrow biopsies and found the Myeloma and Non Hodgkins Lymphoma had mutated together. This makes me high risk as I appear to be the only person this has happened to and they didn’t know how to treat me. Eventually they hit on a combination of Lymphoma and Myeloma chemo which got my levels down low enough for a stem cell transplant, which I had in January 2019, two years after my diagnosis. I’m still in remission and am trying to make the most of it, although I didn’t reckon on Covid-19 getting in the way this year!
I am sure your treatment will be a lot more straightforward, most people’s are. As you are younger it does make it easier to tolerate the treatments. AS you are high risk genetics it might be a good idea to talk to your consultant about stem cell transplants; I know sometimes the suggest tandem transplants or donor transplants as these can give you longer remission times. I found the info from Myeloma UK very helpful in getting my head around it all. You might also like to join the UK Myeloma Support Group Facebook page; you will find a lot of experience, support and information on there and are likely to get replies to queries quicker.
Good luck with it all.
Paula
Hi Mark, I was 50 when diagnosed. I have high risk genetics and it aggressively attacks my kidneys (not bones!) in even small amounts. This Xmas will be 7 years remission post Sct without any maintenance (Tho I have my bloods done next week – but feel well). MM is extremely unique to each individual so just because you have high risk genetics it does not always pan out that you will be difficult to treat – which is the important bit. I know my genetics attack aggressively but, to date, has been easy to treat/keep at bay. Always remember you n yours are unique so you have every reason to be hopeful, buck the trend etc. Stay positive and keep up an exercise regime even when tired – will keep you strong on many levels.
Hello everyone,iam also new to this site
My name is jane, i am 53 years old and was diagnosed with mm in june this year (2020).it came as a big shock, as i have always been quite fit. I have been reading lots of peoples stories over the last month to try and find some answers and information about mm as i didn’t know anything about it or know anyone that has got it. I started vtd treatment 4 days after being admitted to hospital.i dont remember much about the first few days in there as my blood was so low.i had 5 blood transfusion over a period of days and began to feel a little more with it. I had lost about a stone and a half in weight, bearing in mind i was only 9st 9 to begin with.i was in so much pain with my back , just trying to get comfy was a major task.going to the loo a great upheaval.i just couldnt understand why i was in such pain.it wasnt till i got home 10 days later that i read on some paper work that i had a compressed fracture In the lumber reigion and buldging disc in thoratic part of my spine.my treatment has helped with the pain but i am unable to straighten up properly, and i have lost 1 and a half inches in height.i could barely walk from my sitting room to the kitchen for the first 6 weeks after coming home. I am responding well to my treatment, my pp has come down from 54.7 to 3.6. I have some of the side effects, ie, fog brain, fatigue, blurred vision, loud buzzing in ears, slight numbness in feet n fingertips, constipation,all bareable but my main symptom is anxiety, sweating and bouts of weepiness..maybe its a mixture of everything and still coming to terms with my diagnosis.i do have good days and i try to be posative but the anxiety just brings me down.i have had anxiety before on and off.i am supposed to be having sct somewhere after my 6th vtd cycle, but there is a back log from lock down and that might not happen now while early next year thats if we dont have another lock down .i try to take each day as it comes, but some days im just shit scared of whats to come. I know everyones mm is unique to each person, but reading outher peoples stories helps you to understand a little more about mm and also helps you through the bad days.so thanks to everyone who posts, i wish you all the best of luck with your journeys.keep positive.
Dear Rebecca, Graham, Shaun, Paula, Jane. Thank you for all the messages which make such a difference. As Jane says just reading the stories helps me to understand more and more and it is very comforting. Thank you so much for taking the time to respond. It makes such a difference to someone trying to get their heads round this new reality. Sending very best wishes to all.
Hello Mark
I was diagnosed in 2006 aged 48. Relapsed twice since then and had 2 SCT in this time. My first two treatments with the SCT each gave me about 4 1/2 years full remission. I finished my last treatment and maintenance course in Nov 2019 and again achieved a full remission. Since I was diagnosed there have been many new treatments with new treatments in the pipeline. As Shaun has said I am quite happy to answer any questions that you have if I am able.
Best wishes
Kevin
Hello all, from a wet and windy Orkney!
My diagnosis came in August this year, MM (asymptomatic): and at 53, active, and working, to having to go and lie down twice a day, I wonder how much is my brain, or is it really as asymptomatic as the professionals suggest? But, once I’d got over the initial shock, you then start to plan your treatment alongside the consultant and MacMillan nurses. I’ve gone through a lot of dental work, and expect to start CRD chemo in a fortnight.This should be followed by autologous stem cell transplant. Has anyone here gone through all this and returned to work full time? Although I’m happily married, and we are both going through this, it is still a very lonely journey. Telling my loved ones was the hardest thing I had to do.
Anyway, I’m still here, and very much upbeat….and I will NOT be beaten by a dental bridge ( the pain!!)….I know some areas have support groups, but is there anyone on here based in Northern Scotland, Orkney or ShetLand?? Happy Sunday to you one and all!
K
Hello K
It sounds like we are in a similar position (although I am in wet and windy London!!!). I do hope things go well for you.
I know what you mean about lonely- i too am happily married and my wife is amazing but I find it very hard to talk about very much.
I am also determined to be positive and take every step one at a time.
Do keep posting and I will too and I send lots of support to you.
Mark
Dear Kevin
Thank you so much for your kind thoughts and offer and sharing your experience. I’d love to ask questions as they come up and also be a source of support for you if you ever need it. Like I said to K while I am getting incredible support it feels weirdly lonely because others can’t possibly understand what it is like.
Thank you very much
Mark
Hi Kayle – I think most people go back to work full time after Sct/in remission. I chose to work only 2 days a week after SCT but that’s only because I could and I wanted to do other stuff etc. I play a lot of tennis (2 hrs last night n 3 hrs this morning – tho soaking in the bath now as have an important match on the morning!). 6 months post SCt I was at full fitness and playing league matches. This is a blip in your life only – I was in a very dark place at first and could not imagine life ever being normal again – but it will be and as time goes by you’ll learn to lock MM away and
think about it when you “choose” to think about it (like me atm). Mm is much more a mental battle and the sooner you discover/develop coping strategies that work for you the easier it will become. My lifeline was exercise, positive quotes, mindfulness and most importantly recognising that whilst you cannot control the disease or the treatment – you have full control of your mind, your thoughts, your reactions – it is this area we all need to flex, like a muscle, and keep strong. Do what makes you happy and if you are doing stuff that doesn’t then now is the time to be bold and embrace change.
Rebecca
Hi everyone, This forum has taken me by surprise, Being at the ripe old age of 69 it was a shock to hear that so many of you are a lot younger than myself. I was diagnosed only last week with Myeloma. Although I had been ill back in June with pyrexia and a kidney injury spending 5 days in hospital coming out and then having a biopsy in August on my prostate to finding no cancer and then back in hospital in September for 7days and finally someone telling me I might have Myeloma but require a biopsy. Well the only question I had was how long. 5/8 years was the reply, not bad I thought make me 74. However reading all the posts it has made me feel humble that there are so many of you being positive about your conditions, as long as we are kicking there is always hope. I thank you for that. Dennis
Hi Dennis, Putting a deadline on us is the first thing we want to know tbh but as myeloma is so individual and with all the new treatments I do not feel it helpful. Due to my kidney damage on diagnosis I was told (much later) pre Velcade treatment I would have lasted 4 months but I am about 8 yrs since diagnosis! In my clinic I met an elderly lady who has had it 16 yrs with only 2 treatments – of the same drug – keeping her in remission. Another person had it for 20 years n still going strong. I guess I look for the exceptions – and there are plenty. It is recognised, I feel, that the younger you are the stronger you are to withstand multiple treatments etc and treatments are advancing. Aim for 80 yrs at least! Take care
Rebecca
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