This topic contains 19 replies, has 14 voices, and was last updated by 
brocho 13 years, 7 months ago.
Hi All
My dad has just been diagnosed with Myeloma at the age of 51. Obviously we are worried about his case as he has a large tumour on his neck which has kept him in hospital the last 2 weeks.
I was just wondering if anyone had any useful tips. Also what are the survival rates of this thing?
Kind Regards
Mark
Hi Mark
So sorry to hear about your dad. I am sorry that I cannot give any information or tips but the fantastic people on this site will give you all the support and advice. They have brought me back to sanity on many of ocassions.
Although I can't provide any help, I posted to bring your post to the front (if that makes sense?0
Best wishes to your dad and your family.
Jean
Hi Mark
So sorry to hear about your dad….but you've come to a great place for support and guidance.
It's hard to give any tips so early on apart from my main one would be have a chat with the Myeloma UK team over the phone as they are the experts and will be able to help talk you through what your dad may be looking at ahead of him.
As for survival rates….well you'll find different ones everywhere you look (and I wouldn't advise looking too far as most of them are out of date!). Things are looking better every year with new treatments gaining approval and research into Myeloma getting better and better. I know it's hard at the moment, but try not to focus too hard on that side of things….
Good luck with your dad and I hope that the tumour isn't giving him too much pain. Keep in touch on here and I KNOW you'll get lots of responses.
Debs x
As said above, you're in a good place for info and guidance. It is a big shock to start with and we all ask 'how long' but it does vary (I'm 9 years since diagnosis at age 53 myself) but when I looked for information (before I found this site) it looked very gloomy and I thought I'd be lucky to get 18 months.
So, take each day as it comes and good luck.
xxxxxxxx
Hi Mark sorry to hear your dad is going through a togh time As others have said ringing the myeloma helpline will be helpful for you , they are very knowledgeable should be able to answer your questions The survival rate is a difficult one as we all react diffrently to our illness but I read recently that 4 to 5 years is now expected but of course many people live with myeloma for a lot longer There are also a lot of new treatments in the pipeline which is good for all of us.Hopefully they will begin tests so they can start your dads treatment soon although it does take a bit of time as they have to wait for all the results so they can work out which treatment is best .Your dad will have a myeloma specialist nurse who will also be able to give you lots of information Best wishes to you and your dad and please let us know how he gets on Bridget
Hi Mark,
My brother was diagnosed two years ago at the age of 40, a lot of the figures of people surviving up to 5 years are not always a way to guide yourself.
Myeloma is an illness that usually happens to older people so the stats are based on this and sometimes can be over 5 years old.Alot of patients may not have died with MM as were at late age when diagnosed.
Best to try and stay strong , really dark time when just been diagnosed, but my brother has had a stem cell transplant over 14mths ago and doing incredibly well, your dads age will be a plus
Hello Mark
sorry to hear about your dad everyone is correct about the myeloma help line they are brilliant I expect they will deal with your dad tumour first before they start intensive treatment the drugs and treatment today are so much better than 10 years ago I would expect your dad is young enough to have a stem cell transplant and if successful you read about some people with 5-10 years remission I have met a couple of people at the myeloma conference who have had this disease for 15 years and are still well its a very induvidual illness
Best wishes to your dad I expect he is still in shock
Kind Regards Jo
hello Mark
My partner has tumour on spine plus damage to spine.Stared straight away after test on Myeloma X1 Trials.He was given ctd side for test.Intensive pathway decided now on 36 day,has good days and bad just go with the flow.
Mark you will be having a big learning curve with this illness.We asked short medium or long term and was told loooking at 7years may be ten with new drugs.We have learnt that it all depends on how the person responds to different drugs.I also think if you bl…y minded and positive it goes along way.
Go in to library section on this site the drugs are all there the hospital will give you lots of reading materiel your dad might not feel like reading it,but you or your mum can start getting informed it helps,at first it is hard to take in but it will get easier to read medical terms and understand them.
good luck.eve
Hi Mark,
I am so sorry to hear about your dad. Don't look for survival rates – the illness is so individual and the research is developing.
My friend John was diagnosed a year ago and he also had a tumor. He got radiotherapy, chemotherapy and a stemcell transplant. Now he is back working full time and doing really well.
I remember when I "arrived" at this place in panic and full of sorrow, people told me "there is a life after being diagnosed with myeloma". They were right!
All the best to you and your dad.
Hi Mark, I'm 51, I was diagnosed in November last year. As everyone has said the responses and survivial are very individual. When I discovered my diagnosis I thought 'oh fxxk I'll be gone soon', but I'm lucky enough to work in the medical area with some very straight talking friends – basically in the last decade progress has been such that MM is now a chronic disease and you can expect your dad to be around for many years to come. Survival at five years is given because classically in all trials and studies survival at 5 years is measured, however this doesn't mean 5 years life expectancy. If I have a single pece of advice it would be to find a doctor who you respect and trust and who communicates honestly with you – and then ask them what their honest opinion is.
Good luck and courage faced with this terrible shock.
Nigel
Hi Mark
I am 49 and was diagnosed on 4 Feb this year. I don't have any tumours, but do have kidney failure. I think they probably caught it quite early. I'd had back pains, loss of appetite and fatigue for about 6 months, but no idea it was anything too serious. As everyone else has said, MM is known for being a very individual condition, so one person's experience is just that. Don't put too much weight on to other's experiences. Do ask lots of questions of your father's consultant/specialist nurse. They're there to support you as well as your dad.
However, to add to the positive thinking, I was told I could expect about 10-15 years. And, a friend's mother who is 71 had a stem cell transplant for MM about 8 years ago and is still in remission. So, for me, although it is life-shortening, it feels like a substantial length of time to "play with" and I feel very positive and keen to make the most of life.
Good luck to you and your father!
Jet
Hi All
Thanks for the positive feedback and advice. Very much appreciated. It is very heart warming to know that people who have this desease can live with it for many years in remission.
The tumour on my dad's neck is quite serious and he can not eat or drink and is on oxygen at the moment. He has started the chemo and is expected to start the Radiotherapy this week.
Hopefully once they get rid of the tumour they can treat the desease without the need for the stem cell transplant at this stage.
On a side note. I am a long distnace runner and will now be looking to raise money for MyelomaUK through my running
Kind Regards
Mark
Well done Mark that is the spirit.
For your interest I had a large tumour on my neck – it ate my fourth vertebrae ? and I broke my neck getting out of bed on the 11th July 2009. They screwed in posts and pillars as you will see from the attached x-ray. Now when somebody says to me ?You have got a brass neck? I can say ?No, it's titanium?. I am 68 by the way and I find it truly amazing what the old saw bones can do nowadays! I look forward to hearing of your Dad?s progress.
Kindest regards
David
Hi David , very impressive xray you old show off:-)
Hi Mark,
Great to hear you are going to be raising money for Myeloma UK this will give you something positive to focus on.
My Dad was diagnosed in January and it was a major shock as he has always been fit and well. You will find great support on this site and great info on treatment, side effects etc. There is so much info to take in and 2 months down the line I am still on a learning curve. I find that I get as much info as I can on behalf of my parents, I don't always tell them everything I find out as its best for my Dad to deal with it day to day but I can call his nurse and discuss any worries I might have and this is a great help.
Keep us updated, sending best wishes to you and your family,
Clara x
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