[ladygagaParticipant]

Hi everyone.  I have just recently been told that my FIL has Myeloma stage 1 and was diagnosed towards the end of 2013.  he is very fit and healthy and isnt receiving treatment currently as it seems to be steady, but gets monitored monthly.

I have searched all over the internet and getting different answers to my question…Will this eventually kill him??  Im being told its a terminal illness, then im reading stories of remission and other sites tell me on average there’s a 5 year survival rate.

Im completely confused.  As its my husbands dad, my husband seems to be in complete denial of it!  So getting information from him about his dad is like blood from a stone.

Im wanting as much info as possible so that I can be there for my husband and his family.  My hubby may not be prepared to face this, but I feel I need to get as much info as possible and help as much as I can.

Thanks in advance 🙂

[CarolsymonsParticipant]

Try not to read too much on the internet as things are advancing rapidly in myeloma treatment and consequently survival rates. I read of people still alive after 22 years! Nowadays I think we have to regard myeloma as a chronic disease. We have period of remission then a relapse and back into treatment in recurring cycles. Also the average 5 year survival has to be viewed in the context of this often being an “older person’s disease” so very often patients, when diagnosed, have other health issues which naturally impact on survival. It seems that infection is what takes you in the end, as with MM the ability to fight infections is compromised. It is now 15 months since I was diagnosed, 5 months since my stem cell transplant and I plan to be around for many years yet! Fingers crossed!

[ladygagaParticipant]

THanks for replying carol.  I guess it’s just a case of staying hopeful & lots of positive thinking xxx

[SalParticipant]

One of the best pieces of advice I was given when my husband was diagnosed was to look at this website for information as so much of what is on the internet is out-of-date and inaccurate. The doctor who gave me this advice said that the picture would look much bleaker if I just randomly trawled the internet as treatments have improved hugely over the last 5-10 years. Others have recommended the American site Myeloma Beacon, and there is a lot of detailed information there too.

Like your FIL, my husband has stage 1 myeloma. At the age of 45 we have every hope that he has a good number of years in him yet. As Carol says, there’s little point in thinking in terms of life expectancy as people’s general health at the time of diagnosis must have some kind of impact and there are so many variables. It is important to be realistic, but that certainly doesn’t rule out optimism and, if you read some of the stories here, people still enjoy life, even with myeloma.

Sarah

[wallaceParticipant]

I’m 49 and seven years in remission after a stem cell transplant in 2007. I would echo the above comments about searching the internet as there are so many variables with each patient.

 

Mike

[WillisboyParticipant]

I have just returned to work after 16 months off with Myeloma. I am in remission.
I am 52 years old and I too plan to have many good years ahead of me.
My advice is to be positive, lead as healthy lifestyle as possible and come to sites such as this for advice.
As a previous post has said, be aware of some sites as their information is out of date and therefore misleading.
The treatments are getting better all of the time and there is even talk of a cure for Myeloma although that has to go through all the motions so is a little way around the corner.
But the outlook is very bright.

All the best.

God bless you

Graham

[keithmtParticipant]

Just to say that last August I was diagnosed with stage 2 MM and 2 weeks ago, after CDT drugs and a stem cell transplant, was told I am in complete remission. I soon stopped reading all the scary stuff on the Internet and just focused on getting through the treatment. Yes, I had the occasional tough day but looking back now I feel I have just gone through a bad bout of flu and now I’m over it.

I would say that the people on this site have been a great source on first hand knowledge and support but like others have said, you just have to bear in mind that every patient is different.

I hope your FiL’s journey is as straightforward as mine has been.

Keith

[kellymcParticipant]

I am in exactly the same situation, only it’s my dad that has been diagnosed. He is 70 and was diagnosed in March with very early stage 1 MM. No treatment just being monitored, he is due to go back at the end of the month for his first check, so obviously we are all pretty anxious. I feel I know very little about this and no one in my family seems to want find out anything about it, I have no idea what any of his results were as my dad never seems to want to discuss it. Most of what I do know has come from this site , which although a little scary at times, has also been a godsend to help me try and understand what is going on.

So I know exactly how you feel right now!!!

 

[caroledParticipant]

Hello – just to let you know there is life after diagnosis. My husband was diagnosed in Jan 2009 at age of 62 and after going through standard regime known as CDT and stem cell transplant was free from any symptoms until Dec 2013 and we got on with normal life, such as holidaying and put MM to back of our minds, although you do get “twitchy” at 3-monthly check-ups. Last year he fitted a new kitchen, new bathroom suite and replaced some woodworm-infested floorboards and joists in a relatives house which was obviously quite physical work. I’m only relating our story (not offering his services!) so hopefully it is not necessarily doom and gloom on diagnosis. Although the MM has re-appeared (after 4 years) and he is half way through the Velcade cycle, we are optimistic that he will get another remission. Like others on this web-site, I do agree you have to take a day at a time as MM is so individual. Best Wishes Carole

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