[musettiukParticipant]

hi, just last week been diagnosed with smouldering myeloma. i am a 52 year old male, up to now fit, active and healthy with no signs of illness but had a routine blood test which indicated slight abnormalities which resulted in me getting this shocking diagnosis. have had all the usual tests, bone marrow biopsy, 24hr urine test, skeletal xrays….and now trying to come to terms with something which until recently I knew nothing about. head is spinning, wife not dealing with it well and have not yet told anyone else. we are both gym bunnies, run regularly and have a skiing holiday already booked for January only to find that having been honest and declared my condition I cannot get insurance for what could be a chance broken bone. this condition has made me realise the difficulties I am going to be facing. however I am a glass half full sort of person and will try and deal with things as they happen. any advice would be welcomed. thanks, Luciano

[CarolsymonsParticipant]

Luciano don't stress- there are people on this site who have been smouldering for years and years. Re insurance other people with myeloma have recommended the following companies which I have recorded for when I can travel again: World Wide Travel, All Clear, World First, Now I Can Travel, AXA, Staysure and Marks and Spencer. I haven't used them so can't recommend one more than the others.

Carol

[musettiukParticipant]

hi carol, many many thanks for coming back to me. it is so good to "speak" to someone and get this off my chest. I am still at the angry stage! am currently ringing round insurance companies….but they just read from scripts and don't seem to understand the condition. it is very frustrating, but i'll keep trying. thanks again. luciano

[dickbParticipant]

Hi Luciano,

Know what you mean about the skiing, use to go for upto 4 weeks of the year but stopped long before I was diagnosed with MM, cost was the reason but I believed I would go again, now I know that won't happen. As for your diagnosis and the effect on your family, that is the same for everyone I'm afraid, after a while, clear thinking will come back and the emotions will be in check. I'm afraid based on experience, it is going to be up and down for you, the roller coaster everyone talks about but it is not the end of life, it just means your life will be different. So, keep using the forum and learn as much about MM and your own diagnosis, you and your wife will manage it I'm sure.

Richard

[teds31Participant]

Hi Luciano,
I am quite a bit older than you but I have had smouldering MM for about 7 years, its not nice but as my consultant said just enjoy the diagnosis while you can. It does get easier as time goes on simply because you cant think about it all the time, after a year or two. There is a good guide on this site explaining Smouldering MM you can print it out and it helps to show it to family and friends because if you are like me it takes a lot to explain things to other people without getting emotional. All the best and may you smoulder for years. Ted (I go to see my consultant Dec 11 that's when I get to worry.:-) )

[mhnevillParticipant]

Hi Luciano

Just wanted to welcome you to the Site that none of us wanted to join.

I sympathise with your wife. I sometimes think it is almost worse for those who support us. They suffer MM at arm's length as it were.

Do try and do what Ted says, go away and try and live life as normally as possible. As MM so often affects the bones that is probably why the Insurance Companies are saying no to skiing. But if you feel there is no MM bone involvement, keep trying. Maybe your Consultant would give you a letter of support if this is the case.

All best wishes to you both. This is probably the biggest challenge you will face together, but it could make you stronger as a couple.

Mavis

[musettiukParticipant]

Thanks for your kind words Mavis. I have always been a glass half full person so will carry on as normally as best as possible.

[sallywParticipant]

Hi there, my partner was diagnosed with smouldering MM in September this year, he is just 44, I know where you wife is coming from, but let me reassure her, once she gets her head round it, it does get better, I try and learn what I can about this dreadful illness and having this knowledge has helped me.
This site has also been a major help, the people here are wonderful, positive and a mine of information.
Good Luck

[jmsmythParticipant]

Hi Luciano

Sorry you have been diagnosed with smouldering MM. My husband was diagnosed with smouldering in 2006. He had STC In March this year. He is improving a little every day and in September we went on a 16 day cruise round the Med. When he was smouldering we made the best of things and went travelling quite a lot. When Frank was smouldering, after lots of research we went with Columbus. Myeloma was covered. Gold single trip £124. After SCT we went with All Clear. iIt was in our interest to take a yearly policy and for the both of us including all existing conditions it £510. Mind you doesn’t cover America.

Hope you get sorted and long may you continue to smoulder.
Jean

[chris-franksParticipant]

hi my names chris 47 from Manchester, I was diagnosed with smm on new years eve. I am also fit and active and cant really imagine that that will change. ive got my own roofing and construction business and spend have my time on roofs or ridding my lambretta. don’t really know what to say to you as my head is allover the place, but it is what it is enjoy life and if you love sking sod it just do it. may be stay off the blacks ha ha……

stay stronge

chris

 

 

[eveParticipant]

Hi Chris

You are lucky in many ways,because of routine blood test they have caught you early plus SMM,so that’s all good news.

There is no reason why you cannot live a reasonable normal life,I would advice you to ask to join the under 50 as you will find people of your own age!!

What I will recommend is you educate yourself concerning Myeloma,it’s a hidden Cancer that does a lot of damage to the bones before it is often found!!!!! It’s not to be taken likely if you end up with compression on the spinal cord you could be paralysed !! Lots of people have to have there bones pinned ,so ski at your peril !!!

I hope you smoulder for years and never find yourself with full MM .Eve

[docmikeParticipant]

hI luciano ,
I hope you went skiing;smouldering myeloma per se should not increase your risk of broken bones unless a dexascan shows osteoporosis or whole body mri confirms bony lesions.I Have being skiing for the past 5yrs with SMM and osteopenia both declared to my travel insurance, with smm not covered and taken advice for a national osteoporosis centre.
Mike
ps get your m protein measured (and serum free light chain even better )as near a s posible to departure date But avoid long stays in america .
Your consultant should be able to support your case if the above applies .
Mike

[VickiParticipant]

Hello Luciano and Chris,

Sorry to hear of your condition. When Colin was diagnosed in 2011 it was like we’d been hit by a train. We couldn’t believe what we were hearing and then frightened about it. Colin went from being a healthy ski-ing, golfing, kayaking individual and actually very annoyingly good sportsman to having a condition that threatened our normal life!!

We got our heads together somehow and he had sct in November 2012 and is in completely remission, it hasn’t been easy at times and hard for me in another way, feeling helpless to resolve this. It is doable so best of luck guys

By the way we’ve just got travel insurance with now I can travel for the two of us. They were good, declare all and it’s worth a try!
Vicki and. Olin

[Author]

Posts