This topic contains 115 replies, has 42 voices, and was last updated by bev2504 9 years, 4 months ago.
Bumping this post up again so that people know how to get hold of Scotty if they want to join the extra Under 50 site….as she says, the language is a bit riper but it is another type of support. x
Hi Kay my names Karen and today I have been diagnosed with myeloma and I am very scared, got to go to the hospital in 2 weeks, I am 46 years old married with2 children all my bones hurt all the time and I have anaemia the doctor said I have no protein or calcium in my body as it has been destroyed really need some friends to talk to.
Hi Karen
Your posting got mixed up in the dates. So sorry you have to join us but this is a wonderful site for help, support, understanding and encouragement. I'm on the other side of treatment now. It was not a walk in the park but it's certainly manageable. It sounds like they have caught yours early as they did with me. It is a complete shock. Listen to your body and try to get people on standby to help with your children. Look after yourself. Day at a time. Keep in touch Kay x
Hi KAren,
Welcome to the site. And drop Scotty an email and she will send you an invite to the under 50 site.
We're all here to help you through the early days, which can be really scary. But you will come out the other side.
Take care
Debs x
I am now too old to join the under 50's but I was only 42 when diagnosed in October 1992. you will be pleased to know that after an autologous stem cell transplant I am still here at 63 with no sign of MM.
Chris I am delighted to read your post. It is always uplifting hearing about real positive journeys. Long may it continue.
Love jean
Hi Chris
Congratulations,that is good news plus brings a lot of hope to people who are just starting there journey.
We could do with people like you posting more often,but i suppose once you are out of the myeloma bubble,you do not want to keep looking back
Thanks for you news Chris. Eve
Chris, that is amazing news and like the others say, thank you so much for sharing your great story.
I don't think any of us find it easy to think that we have 20 years ahead of us….I try to be positive, but at the back of my mind is that it is very unlikely. But stories like yours are so important for us to hear so that we start to REALLY believe that it could be us.
Well done to you and I hope that you are enjoying life to the full! You've put a smile on my face this morning 🙂
Debs x
WOW. That is truly amazing – and everyone in the Under 50s will be lifted by seeing this. Thanks for popping it on – we've lost several of our members over the past few months which has been tough to deal with, so a ray of hope like this is always inspiring to see. Long may it continue! Scotty.
You are so right! Sometimes I have to fight off 'looking back' especially if I am not feeling too good for whatever reason. I have to tell myself that it is not the MM coming back, I am healed! Speak to your body, speak to the cancer, tell it to die and yourself to live. Command your immune system to fight the MM. If you don't believe this is possible check out Dr. Bruce Lipton on YouTube or Andrew Wommack on 'The Believers Authority'.
Chris
Hi Chris
Its sad we do not have something like the Myeloma Beacon Survive,s Site,
then we would know how many people are doing well after so many years the longest I heard about before you was 18 years,lots of 10 to 12 years and still going strong.
When I am feeling a bit down,and I am only the carer,I go to the American site,and it makes me realise,it can be done,even with lots of bone damage,its getting control of the Myeloma that counts,So thanks again Chris.Eve
Hi all…
…and greetings from Finland. First of all i have to say that my english is not complete but i'll try my best… I would like to share my story and i hope that you all get hope for that.
The first time I met my new "friend" in 1986. In that time after high school I went to army, because it belongs to civic duties here in Finland. Soon after that I felt pain in my right leg always in running and walking. Little by little I felt more pain. Somehow I thought that it was somekind of stress injury. Okay, somehow I try to live 11 monts in army and I reach civilian. In December 1986 I took phonecall my doctor in Lahti. He said that something is wrong. I have to go at once to Helsinki, Töölös hospital. In there, after awful pain in my leg I heard first time after biopsy : propably cancer. Couple weeks after that I heard that its plasmacytoma. Most of patiens with myeloma have vagueor no symptoms that are commonly seen with many other conditions. But in my case I felt pain and on top of that my leg was broken femur. The avererage age at diagnosis is 70. Only 2 % of cases occur in people under 40, and I was under 20 in 1986 !!!
How I felt after that ? I was devastated. I was 20 years old and my life was not even start when someone said me that you have myeloma.!! Doctor told me in Lahti when my my leg was broken femur as soon as I come back to lahti, that I could expect to live three years or something. At that time there was very few effective treatments for myeloma.
Of course, after that I try to find more information about the disease. But as you understand it wasn?t as easy as it is now to get information. There was not all that much on myeloma to read about at the time. Only couple books at hospital and most of them so scientific that I didn?t understand most of facts I read. Only way was make questions for nurses and doctors. After that i went adjustment training course for young cancer patiens, but there was of course one problem: my disease was so rare and most of others have other kind of cancer. Actually in 1987 I live in huge ?ignorance concerning my disease. Im so happy that now situation is different (for example this support group).
I have living now over twenty six years with myeloma. I know that my cancer is going to be bad some day but I hope that i live until im 80..;=) Okay probably not, but I hope that world looks like different in 2020 and im going to get new treatments for my body. The clinical trial may be evaluating a new drug, a new combination of than a standart treatment. Of course I hope expanded use of stem cell transplantation together with new drugs.
I would like to say all of you that never ever give up ! I hope that my messages was not too long..:=). Iam new member of this site (registered today…). Maybe i found some way to add my photo to username. Keep in touch !
Mika
Gosh Mika – aged under 20 and 26 years ago! That really is incredible. Thanks so much for sharing your story on here, it does really help to hear positive stories. And your English is excellent!!
Helen
Thanks Helen- It is easier to write than to talk english. Nice to hear that you understood what I was trying to tell you..;=) By the way, my stem cells are frozen in hospital. Good luck for you !
Mika
Welcome to the family, Mika, and thank you for your positive post.
It is terrific to hear from someone who has lived with this pesky disease for so long and is so full of optimism
And your English was very clear and easy to understand too!!
Eliz
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