[marie1ukParticipant]

Hello My name is Marie , Ive been married to Chris for just over 5 yrs (30/05/2008) Chris was diagnosed with Myeloma earlier this year, After having blood tests for something else . Chris is 45 years old , never smoked or drank to excess. All I keep thinking is "why him ? " To say we are distraught is an understatement !! He is at the "smouldering" stage, so luckily no treatment needed yet. We are both trying to be very positive at the moment .But I carn`t imagine my life without him I hav`nt posted on here yet , as I dont really know what to say. But I do read posts by all you other wonderfully brave people. xx

[CarolsymonsParticipant]

Don't stress he could be smouldering for years with a little bit of luck!

Carol

[marie1ukParticipant]

Hi Carol

Thank you for that. We saw one of the consultants , he told us that within 5 yrs theres a 50% chance of being symptomatic , and the risk increases at a rate of 10% per yer therefter . That to me doesnt sound very good. But we are remaining positive, Although we are having plently of "blips" along this horrible journey.
We are both still very emotional as the news is still quite new to us. We have only known for just over 6 months. His 2 sisters hve been tissue typed ,and neither are a "match" we are just waiting for his brother to be tested

Marie x

[jmsmythParticipant]

Hi Marie my husband smouldered for nearly 7 years before treatment. Had SCT in March this year – enjoy every day and I hope it is years before treatment stRts. I think Ted (one of our forum friends) has been smouldering for over 7 years. He might be along later

Best wishes
Jean

[teds31Participant]

Hi Marie, I am 82 and have been "Smouldering" for over 7 years, MM is a very personal thing in that every one is different and you cant compare one person with another, so although statistics say 50% go on to develop full MM in 5 years that is only a statistic and may or may not apply to Chris. I know its worrying and you will find that when hospital visits come along you will dread it ,but try to live a normal life between visits and keep coming on here for help and advice and the occasional moan, because we all understand. Best of luck. Ted

[teds31Participant]

Hi Just a little note go to the "Myeloma info" site (follow link on here) and you can down load a pamphlet on Smouldering MM ,its useful to have the info and also to show to friends and family who may ask lots of questions that are difficult to answer.Ted

[dickbParticipant]

Hi Marie,

Our background is similar to yours, we were married early 2008, we have a young daughter and I was diagnosed with full MM in February this year. Our lives were also complicated by a move to Germany, my wife had work and I was supposed to find some. I was diagnosed 2 months after we moved and on top of all the hassle of a complete life change. My job in the UK kept me very fit and healthy and we believe the strength in my muscles as well as the increased strength in my bone structure helped to prevent bone breakages despite having lesions in my shoulders back and hips.

Like you we went through a very emotional few months and now I am almost blase about it, I do have Chemo twice a week, the bone biopsy scares me and I am a little anxious about the Stemcell transplant but while we can we are trying to lead a normal life. We are doing this more for our daughter than for me really because I can't ever have a really normal life.

For you, you will get into the rythem of things, no one knows how long Chris's MM will smoulder for, it could be 10 years maybe or longer and then treatment will put him in remission for years after. Medical science has moved quickly in the last 10 years and is likely to do so in the next 10. The MM support group in Germany we joind has a couple of people who have been in remmision for 11 years. So if you do the sums, that's up to 21 years, that takes him close to projected retirement age. He may very well be around a lot longer. I've paid National Insurance for the maximum required for a full state pension and I'll be buggered if I don't get some of that cash back.

The really good news is that it has been detected at the smouldering stage, many are not diagnosed until after a lot of damage has been done. So, to be informed is to be prepared and now you can plan on how you work with the Myeloma before Chris moves out of the smouldering stage. Plan accordingley and please don't let Chris feel like he will be an invalid,or a burden, he can still do and will partake in a lot of things.

[eveParticipant]

Hi Marie

I just want to give you a little thought,!!!

If you worry about tomorrow you will not enjoy today.

Hold on to it, Eve

[sallywParticipant]

Hello Marie
This to is my first post on here, my partner was diagnosed a month ago with the smouldering kind. He is only 43. He went to the GP with back ache and numbness in his leg. Our GP was on the ball and did everything he could, he has been great.
What can I say, other than the bombshell is still exploding for us. The turmoil we feel is unspeakable. Our future feels so uncertain, we are trying to carry on as normal, but it is always in my mind, and most definitely in his. We are staying positive though (or trying to)
I just want to say that I know how you are feeling, and know that after reading other posts on this site, we have the great support of those who have been there before us.
This site has been a great comfort to me, there is such a good community here, and they are a mine of information and experience.
I hope for us both that long may we smoulder, but know we will cross that bridge at some time, but not today, so make the most of that.
All the best to you both.
Sally W

[marie1ukParticipant]

Thank you Jean xxx

[tomParticipant]

Hi Marie and Chris

Well a warm welcome to you both.

As you can see I am writing this just after 5am yep am up for work 6/2 five days a week and thats after my SCT in 2009, just to let you know its a Doable, stay strong you two and lets hope you smoulder for years.

Love Tom Onwards and Upwards. xx

[VickiParticipant]

Hi Marie and chris

Can sympathise with the bombshell effect. My Colin was diagnosed in 2011 after going to the doctors with a bad back! It would be wrong to say that life is totally normal as I'm not sure it can be after a diagnosis like this, however….life can still be good and we thank our lucky stars every day. Colin had his sct at end of October 2012. We are trying very hard to enjo every moment, and we are!

Every now and again it does get a but much whe you think too deeply, but hey just enjoy life best you can. It's not been an easy road getting here, as others will know but we are here and trying to be as positive as heck 🙂

Hey jean and frank, you look posh on photo , was that the cruise, hope all went well!

Hefty Tom great to hear from you and showing off, getting up so early 🙂

Best of luck and keep well all

Vicki and Colin xx

[jmsmythParticipant]

Hi Vicki and Colin

Yes that was the cruise. We did enjoy cruise but felt it was too early and too long. Think Frank thought he was on the up but soon found out he wasn't.

Was only today that he said he felt a bit stronger

Hope Colin you are doing well
Love Jean xx

[VickiParticipant]

Hi jean and frank

Yes it's funny isn't it….Colin has real up days and does loads then bang, shattered for a couple! Still guess that's the cycle! Hope frank continues on the upward trend! At least you two had a get away! You both looked great anyway!

Vicki and Colin xx

[beverleyParticipant]

Hi Marie

Welcome to the smouldering club. I was diagnosed 2 years ago but I dont know how long I had it before then. There are probably hundreds of other smoulderes (not sure thats a word) but they dont know it because they have had no need for a blood test or other investigations.

Have you read the info sheet on smouldering myeloma? According to that the risk is 10% of smouldering patients will progress to active every year in the first 5 years, 3% in the next five years and 1% per year thereafter. So the longer you can smoulder the better.

You will learn to live with it, I cope most of the time and just have a blip before my blood tests every 4 month.
It's difficult to live with not knowing what is around the corner but as Dick said at least if it decides to become active we are meeting it head on. We have caught it early and with any cancer that's the best way to fight it

Take care
Bev

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