[tonyblackstoneParticipant]

I’m recently diagnosed with Stage II Myeloma aged only 51, I was wondering on this forum who’s still battling and for how long?

I’m a very positive individual and can see that Myeloma is very different for everybody as there are lots of moving parts, but I wondered just what my chances are of making 10+ years, I can see the statistics tell me around 25% will make 10 years, anyone on here been 10 years after starting or even longer?

[rosie1961Participant]

Hi Tony
Sorry to hear about your diagnosis. You are definitely in the right place for support.
My dad was diagnosed aged 66 and lived a mostly active life until he was 82 (2017) that was without stem cell transplant and other treatments that have progressed since then. I’m sure others also have encouraging stories.

[florenceParticipant]

Hi Tony,
I was diagnosed in 2008 when I was in my mid-40s and I am still very well and able to work, exercise, go to the theatre – I have seen my children grow up and unless something very unexpected happens, will see one of them married later this year. I have had two stem cell transplants and each one of them gave me five years of remission. My friend, whom I met in daycare on my very first day of treatment, is also still alive, well and not even on any medication at the moment, after 15 years on Revlimid and she has travelled the world and is now working in a demanding part-time job. A colleague of mine also lived out the whole of the last 20 years of his natural life with myeloma and died of something unrelated. Here’s another thing – again on my first day of treatment, I met a vet (!) in the queue for x-rays. He was surprised that such a young person would have myeloma but he said to me – if you have to have myeloma, now is the right time to have it. Such a lot of new treatments are being discovered right now. With new treatments, living with myeloma can be just like living with diabetes.
With the statistics, bear in mind that the people on whom these numbers are based will have been having old-fashioned treatment regimes. We will have to wait a while until we can read statistics based on the treatments people are being given today. Also, the stats will cover the full range of patients, some of whom may have had other co-existing illnesses etc.

[davidainsdaleParticipant]

Hi Tony

Sorry to hear that you have recently been diagnosed with Stage 2 myeloma, something none of us wants to hear.
Florence has already made some good points. It’s difficult to draw any conclusions from the statistics – Myeloma UK have published figures to the effect that a fifth of patients die within 60 days and that the average age of diagnosis is 71.

On the positive side, our West Lancs and Merseyside myeloma support group has two ladies who are now 22 years post diagnosis and one chap 18 years post diagnosis, with several more than 10 years on.

Age and general fitness seem to be factors in favour of a long remission.

I started my myeloma journey in 2012, aged 58 and like you have Stage 2 myeloma. First line treatment went well and expect to be starting second line later this year. Even since 2012 the number of treatment options and their efficacy has increased considerable, the hope is that it will become a chronic condition which can be kept under control.

Hope this helps.

David

[tonyblackstoneParticipant]

Hi Rosie

Thank you for taking the time to reply, I really do appreciate it and I was sorry to hear that your Dad passed away, great to hear that he lived to a good age regardless of Myeloma.

Take care
Tony

[tonyblackstoneParticipant]

Hi Florence

Sincere thanks for replying, it’s a very positive and uplifting post that I really appreciate.

On reflection I’m only just a month in from the diagnosis and the initial enormity is taking time to normalise, I have 2 young girls (aged 4 & 7) as well as kids in the mid 20’s and was just feeling that life was so unfair, however your post and others have really boosted me beyond belief and I can see a far more positive pathway forming in front of me now.

I wish you all the very best wishes on your journey and hope we both go on to live out a nice ripe old age.

Take care
Tony

[tonyblackstoneParticipant]

Hi David

Thank you for the reply, it’s really appreciated.

Fantastic to hear that you’re aware of numerous people surviving Myeloma for well over 10 years 🙂

I plan to visit the Leeds Support Group next week for the first time and will be going along to a patient information day later in September, I’m sure both will give me lots of positives!

Prior to the Myeloma I was very fit and healthy and so hopefully once I can shift the severe bone pains that I now suffer from I will be able to get back to a more active life.

I wish you all the very best on the treatment and hope it delivers for you.

Good luck and take care.
Tony

[MikejanulewiczParticipant]

Hi Tony
A very warm welcome to you.

I was diagnosed age 50 with stage 3, very poorly initially, family told likely less than one year survival due to how poorly I was.

That was 7 years ago!

My journey has been up and down, good and not so good times. Lots of fractured vertebrae, a bit of neck surgery. More neck surgery planned, diagnosed with fractured sternum yesterday! And now in 5th relapse

BUT

The bad times get forgotten and I have had a great life in the last 7 years and hope for a good few more years still to come.
I’ve a wife and 2 older children 27,29. Who have been fantastic support along with other family and friends.
I’m retired from work and in the 7 years have fulfilled a lifetime ambition of renovating an old house and building a modern extension. Never would have done that if it hadn’t been for myeloma.

I am also looked after by the team at Leeds. This team are fantastic. The one downside is the clinic is busy! Expect a 2 hour wait, sometimes longer. Ask for first appointment slot if you want to reduce wait time. But, 2 hours to see what I think are probably one of Europe’s top myeloma clinics- not bad really.

I hope you get your pain controlled quickly. There used to be a pain doc in the clinic but I haven’t seen her face for some time now. Ask. Most gps are very good at pain control regimes.

I hope I see you in clinic some time. I’m not sure when I’m next there as it’s all changing cos of yesterday’s new problems.
Please feel free to ring or text/WhatsApp me on 07852 768027 if ever you wish too. I don’t go to the support groups myself but understand they are very good.

Good luck with your journey Tony.

Stay positive.
Enjoy your life.
Do all the things you may have put off. Create fantastic memories.

I truly believe myeloma will have a cure very, very soon. These are very exciting times.

Kind regards

Mike.

[kevinParticipant]

Hello Tony,

I have found that ‘positive’ is good. I was diagnosed in 2006 at the age of 49.Have had 2 relapses in that time and am currently on maintenance treatment until November. I was told when first diagnosed 50 / 50 5 years. There are new treatments coming about all the time. I don’t remember the treatment I am on now being available at the time of my diagnosis.
Best wishes
Kevin

[tonyblackstoneParticipant]

Hi Mike

Apologies for the late reply, I’ve had a bit of a rough week, just coming out the other end now and feeling much brighter.

Thanks for sharing some of your story, sounds like you’ve had a very bumpy journey to date BUT as you elude to, you’re battling and managing to live the best life you can 🙂

I was told at clinic on Wednesday that although my bone legions are very severe, I’m fortunate that my vertebrae are not currently badly affected, it’s pelvis and hips for me and I will look out the pain nurse to see what more maybe can be done.

I wish you well with the surgery and will look out for you at clinic ( I’m currently due there next on 21st Aug). I’m hoping to get to the Leeds Support Group on Monday 29th July.

Take care and good luck.

Speak soon
Tony

[tonyblackstoneParticipant]

Hi Kevin

Thank you for replying to my post, I really do appreciate it.

I totally agree that what you and others have said is that treatment is basically progressing far more positively and that’s having a very positive impact on survival, the published statistics are therefore not as reliable.

Since posting receiving so many lovely replies I’m so much more positive and determined to smash any current statistics in to smithereens!

Forward we go.

Best regards
Tony

[rosie1961Participant]

Go for it Tony! We are all rooting for you.

[Anonymous]

Dear tony, you’ve received some great replies describing well the challenges surrounding being treated for myeloma, it’s important to remember that all myeloma patients are utterly unique, it’s really not just one generic disease but lots of individual diseases. My advice is to enjoy the good days to the full and don’t waste energy on fighting the bad days, I just go with the ebbs and flows. Treatment aside it’s how you cope with the emotional side of things. You are in a situation where’s new therapies are coming available all the time so have every reason to be hopeful.
Best wishes Kay

[tmcintyreParticipant]

Hi Tony,

My husband has been on this journey since xmas 2016. Induction treatment didn’t work for him but he was lucky to get a trial drug – Ninlaro (Ixazomib) which worked almost immediately and got him ready for SCT. He is still on it as maintenance treatment, reason being as he took so long to respond initially. He was told in June that he is in complete remission (remission hadn’t been mentioned before)

Its been quite exhausting for him so he took early retirement. Sadly I’m not sure it was the right decision as he seems to be spending his days either sleeping or watching tv. He has put on a lot of weight which is causing problems too but he doesn’t seem to understand that. I think depression might be at the root of it. Still, we have our first grandchild due any minute and I think that will give him a new lease of life.

Good luck on your journey, there are so many good drugs available now and treatment is not too harsh on the body. The rest is up to you and how you cope with life. AS you have read, some people can get back on with work and life, if they’ve a mind to.

Teresa

[tonyblackstoneParticipant]

Hi Teresa

Thank you for sharing, I’m really hoping the remission is long term for your husband so he can gain a level of control back in his life. I’m sure that becoming Grandparents will be a great boost 🙂

I can relate to the tiredness, it’s been one of the biggest side effects for me, I’m determined to stay working normally right up to 67, I’m lucky that my employer has been so very supportive already and I have assurances that this will continue, this really helps me out.

Good luck and best wishes
Tony

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