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Thank you Jane. I think I am slowly but surely getting used to the drugs. Now that the major side effects have been treated by doctor I am able to manage with the numbness etc. Will remain positive especially after reading that you are in your sixth cycle now – I am looking forward to mine. 🙂
Take care. Naren
Hi Everybody,
I am also from
Yorkshire near Beverley but now living in the Selby area. I was diagnosed 13 years ago (at age 57) when after a misdiagnosis found myself in Hull Royal with kidney failure and on dialysis. Two days later the Sister had to tell me I had Multiple Myeloma. I went through all the same stuff you are going through now, had dexamethasone, thalidomide and so on and that was for about a year, then High dose chemo and a stem cell transplant. I looked like I has just left Belson Concentration Camp, no hair, a pity as this was my only redeeming feature. I was made redundant on the grounds of incapacity from my job as a College Head of Faculty of Technology. The whole thing seemed disastrous. My wife left and I faced life alone. However I did manage to work my way back to fitness, After the Stem Cell transplant my kidneys did reboot a little and I managed to reduce the dialysis and then stop it altogether, my EGFR was still quite low but I had freedom. I went back to teaching part time, then eventually full time. My life gradually sorted itself out, I went back to the gym, joined a walking group, had holidays in warm places in winter, met fabulous people, had some fun, learned to dance, bought a sports car, I am so grateful for the doctors and nurses who have helped me, Whenever anybody asks me how I am, I’m Fine, no matter what. Two months ago my Myeloma relapsed, this time its Velcade, dexamethasone and anti virials, uncomfortable for sure, peripheral neuropathy yes, Cant sleep when the dexamethasone days, feel a bit off the rest of the time, well OK a lot off, but still fine if you ask, no point in being miserable. Damned sports car failed it MOT yesterday, but it will get fixed, dancing and gym are off too, but that’s COVID 19 not Myeloma. I know what you are going through but you will get through with help from your friends and the medics. My daughters were both in their late teens, they both found work they like, married good lads, had my lovely grand children, bought houses and give loads of love. Plan yourself some little treat that you know you will enjoy, don’t be afraid to ask for a little help, as the treatment kicks in tomorrow will be better, you can beat it, try to stay positive and let everyone who asks know you are positive and you begin to believe it yourself, love life. My very best wishes to all of you.
Hi airman68,
Thankyou for your post, im sure it will give us all a lift we need esspecially with your positivity.yes it is all very daunting and scary at first when you dont understad mm and its treatments and how it all works.eventually things start to settle down a little and we start to ger a grip with things.to know you and outher people that have been on their mm journeys for the amount of years you have just gives us all hope and to keep being positive.i hope your current treatment goes well and wish you all the best for the future, take care keep loving life.
Hi airman68,
I echo Jane’s comment above. Your journey, experience and in deed positivity does give us all the hope we so desperately need. It has definitely motivated me to be even more positive and look forward to my future 17 years.
All the best with your treatment. I am sure you will win the fight once again.
Take care
Naren
I got diagnosed on Tuesday. Am petrified. Have two daughters aged 10&14 and am soooo scared I won’t see them grow up .
Hello Deano
sorry to hear your news. I remember what it was like for me. I was told that although not curable it was treatable. That has been the case and believe it is becoming even more treatable. Here I am and at my last blood test am in full remission. I was diagnosed in 2006 aged 49. Since then I have seen both my children married and have 2 grandchildren. Also since then treatment has come on leaps and bounds with new ones being used now that I had never heard of initially. There are also new treatments coming alng all the time. I have always felt positive about my treatments and continue to do so.
Best wishes
Kevin
Hello Deano
I am currently in my cycle 2 and the medicines that are part of the VTD Chemo treatment seem to be working quite well. Yes there are some minor side effects but different people have different side effects and if we keep a positive attitude, tolerate the side effects then the medicines do really make a difference in killing the cancerous cells. My daughter is in her A levels and I too used to worry a lot when I was diagnosed on 2-Oct this year but now that the medicines are doing their job, every single day raises the hope and I feel more positive and motivated. Just keep a positive outlook and ask the family to do the same (I know its hard – we have been through this in my family).
I am sure you will be fine and that you will live to see your daughters grow.
Take care and God bless!
Naren
Everyone on here seems to be ten years plus, is that right? When I stupidly looked on internet whilst awaiting my results it said life expectancy was 5 years . Family falling apart at that prospect . My daughters just know I have cancer , we can’t tell them that .
Hello Deano
I would certainly echo Narens post. Like you I checked the internet as I had never heard of myeloma and found the 5 years prognosis. 5 years !! that was 14 years ago and still counting. Naren mentioned positivity and for me positivity was the key. I have the utmost confidence in my consultant and everyone else that has looked after me over the years and that confidence ? positivity just keeps growing. I have no doubts I will be here for many years to come.
If you have any questions about my journey please ask.
Best wishes
Kevin
Hi everyone. My wonderful husband was diagnosed in July aged 59. The first weeks were utterly awful and I thought he would die. Its November and he’s still here 😊. VTD stopped after 3 cycles as his light chains increased. Wasn’t a surprise as his symptoms had returned with a bang. Now on VCD. Pain is Still a big problem and we are both worried that this treatment might not be having the desired effects. The psychological impact of this disease is huge. We so desperately want and try to be positive but it’s really hard sometimes. The uncertainty of the future makes it very difficult. This forum really helps me. The positivity and support given is amazing. Lee said last night after a truly wretched day “call me Gloria from now on, I will survive”. To everyone out there I hope you have a good weekend. You all deserve to.
Hi Deano – I was diagnosed at 50 and daughter doing her GCSE’s – she has completed her degree and currently living abroad…if I could have foretold this at diagnosis I would have saved myself a lot of angst (very much an understatement!). Don’t despair – new treatments are coming out and often statistics are based on older treatments and much older people with perhaps other comorbidities. I am 8 years since diagnosis and 7 since SCT and remain drug free and living a normal life not impaired by MM – and you will too. Often MM is very much more a mental battle but once you develop coping mechanisms that work for you and you see life resuming as normal again you will learn to live well alongside it – believe me it is a marathon not a sprint – so you have time to breathe and focus on how you can live with this mentally. I chose exercise, motivational quotes, blasting songs, mindfulness. Whatever suits you – find it – and start disciplining your mind, like flexing a muscle. You will learn to put MM in a box and only let it out when you choose to – focus on that and you’ll do just fine.
Best wishes
Rebecca
All
New to the forums and appreciate all your honesty, I was diagnosed in Sept 20 and have just started cycle 6 with an imminent consultation in prep for my STC.
I am 54 and although not a great lover of forums, I have gleaned info from these as there are many similarities, today being a bad day as two days after a Dex,Zometo,Velcade dose!!But it should pass, all other symptoms are like a rollercoaster! Discussed with others and I must say that you have to be true to yourself, look at the light at the end of the tunnel and reach that goal!
One thing that raises its ugly head all the time is the mental challenge of the process, keep a diary, talk to you nurses but most of all be strong and be positive that you WILL come out of the other end, having a long, healthy remission!
Stay safe and keep well
Hi there,
Another newcomer to join the ranks…
Aged 54
Diagnosed last 2 weeks after a tumour on my spine.
Starting VTD on Wednesday after some Radiotherapy last week.
Have been reading thru the posts here moving from self pity to admiration.
I’m sure we gonna have plenty of experience of the ups and downs to share!
Lee
London
Hi Lee
I am in my fifth cycle after which they are planning to do Stem Cell Transplant – time really flew as when I was diagnosed in Oct last year I was worried about the long journey ahead. Side effects of VTD medicines has been my only challenge (and I guess it is the same with some others) but I learnt to cope with them as I progressed through each cycle.
Just keep a positive attitude as that will be big factor in the recovery.
All the very best. Take care and stay safe.
Regards
Naren
Hello
It really is a very scary time when your first diagnosed. For me that was two years ago and I would never have believed that life could be normal again. I remember the huge bag of drugs that they gave me along side chemo. I think because they have to act so fast it’s so overwhelming and suddenly your trying to cope with the side effects and also getting your head around it. If I could’ve seen then how well I would be feeling now it would’ve been such a comfort to me. I think mindfulness and positive thinking really helps and also accepting that there will be bad days and that’s ok too.
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