[beverleyParticipant]

Hello
I am 52 and was diagnosed with smouldering myeloma last year after a blood test for an unrelated problem. I had a skeletal survey and MRI all of which were normal. I have bloods every 3 month (just waiting for results of latest ones)

I work in the NHS diagnosing breast cancer so find it difficult sometimes.

It seems that smouldering myeloma is an unknown entity, so I just wondered how much of a rarity I am.

Thanks

[jmsmythParticipant]

Hi Beverley

Welcome to the forum. I'm sure you don't want to be here but they are a great bunch of peeople on here, you will get support, info and friendship. My hubby was diagnosed with smouldering myeloma 6 years ago and just started treatment last month. Come here and ask any questions, they are a very knowledgeable lot.
Regards Jean

[beverleyParticipant]

Thanks I have been trying to ignore it for a year hoping it might go away!! I think it is called burying my head in the sand. Nice to know I am not alone

[TinaPParticipant]

Hi,

I was diagnosed with smouldering myleloma in 2010 after a routine blood test showed something not quite right with my red blood cells.

I went on being monitored ever 3 months till Jan of this year. I had an MRI which showed I had fractured a vertebrae and had 3 lesions on my lower spine. This was the start of my active treatment.

But some people smoulder for longer, and I don't know how long I had had MM before it was diagnosed.

Keep on smouldering, and ask all the questions you want. I have found the people on this site very supportive.

Take care

Tina

[eveParticipant]

Hi Beverley

This is just a welcome to the site,and hope you keep on smouldering for many moons.

By being diagnosed early,it means they will keep a careful eye on you,learn as Much as you can ask Ellen for books on it.

My husband went full in to MM with a lot of damage,and we do not know how long he had it.
So my advice is learn as much as you can, but knowing they have you in there sight at all times EVE

[penniechapmanParticipant]

Dear Beverly, My husband Andy was diagnosed with the smouldering variety in May 2000. He then had his first treatment in 2002 and has been doing really well. Over the years there has been such remarkable research into myeloma and new treatments have emerged – velcade and now revlimid. We made the conscious decision to get on with things as normal and it has worked. Good luck. Pennie and Andy

[teds31Participant]

Hi Beverley, I have had Smouldering Myeloma for more than 5years, its very frustrating you are not on either side of the fence, and as some one has already said you dread the 3 monthly blood tests. Even on this site (and they are all great) you feel a bit of a fraud .
If you want some more info try the info sheets on this site,
go to Myeloma UK publications
info sheets
related conditions
click on Smouldering Myeloma
Click View on the RH side
you can read it or print it out to let other people read as I did.

[HelenParticipant]

Hi Beverly
I probably had smouldering mm for about 3- 4 years before it changed to end stage disease. I thought I was having a bit of a struggle with arthritis, being a 50+ nurse! Don't get too tired or run down and I hope it stays 'smouldering' for many many years.
Love Helen

[MariParticipant]

Hi Beverley,

Like you my husband was diagnosed with smouldering myeloma after a routine blood test for something else. This was in 2004, he had 6 monthly blood tests and carried on as normal. i think we too put our heads in the sand and carried on as normal, it worked for us. I hope you will smoulder for many years to come but do be vigilant. Steve's myeloma became active in the Autumn of 2009, first with the odd twinge of rib pain and then with increasingly sever back pain. Obviously he went to consultant who said his paraproteins were still fairly low, about 17 to 24 and that his pain was caused by something else. We convinced ourselves that he had a slipped disc and were waiting for an MRI when suddenly overnight he had tingling and lost the use of his legs. He had a plasmacytoma growing on his vertebra which has compressed the spine. This ended up in an emergency operation and after that he started his myeloma treatment. His consultant was EXTREMELY apologetic that he had not caught it sooner!

I dont want to worry and scare you with this story, far from it, but if you have pain and think something is happening, insist on an MRI to check. Hopefully it will be nothing but maybe it will save you a great deal of trouble and heartache. Steve took a year to recover from this, a year which included his treatment and a stem cell transplant but he has had great remission when he lived a normal life and he has been working full time, he was 53 when the myeloma went active.

In the meantime, keep this in the back of your mind, go for your checks, be positive and live a wonderful life. Sometimes smouldering myeloma never develops into the full blown version, sometimes only after many years, I am sure you will be one of the lucky ones,

Much love Mari xx

[VickiParticipant]

Hi Beverley

Welcome! My partner Colin was diagnosed with mm last october 2011 and did not have smouldering myeloma. (well as far as we are aware!). I can't really offer any advice other than to agree with the others and be supporting andnencouraging when you need it:-) The friends on this site are well known for it!

Colin has finished his induction treatment and is waiting for an SCT in august. We were devastated when Colin was diagnosed because like others a random blood test put us on this roller coaster. That said having been daunted by the treatments the medical teams are great, no question too insignificant and always give you time. Hope you don't need to experience these treatments for a very long time.

Vicki and Colin

[teds31Participant]

Good advice here ,take great care with any sort of pain such as back ache etc. I always tell them at the clinic and have had scans etc. several times,each time nothing was wrong but it pays to be carefull. Ted.

[ronnie17Participant]

hi I am 56 and have just been diagnosed with asymptomatic myeloma. It was only in march when they said it was MGUS. I had to insit on having a bone marrow biopsy and after having this was diagnosed. My plasma cells are 15% and my paraprotein is 15 but this keeps on incrasing 1% a month, The haemotologist said that as my calcium level is normal and that I am only border line anemic then I do not need treatment although she has put me on Bonefos. What concerns me is that I have had severe pain in my back a ribs since last year but she is still insisting that this has nothing to do with the myloma, but I disagree as I had this before I knew anything about MGUS or myeloma. I also have had a lot of infections and have b12 defficiency which i have to have injections for every month. Has anyone else had problems like this

[beverleyParticipant]

Hi
Thanks to everyone who has answered my e-mail. I actually feel a lot more positive about things. I was starting to get despondant about it but everyone has been really supportive and it is obviously not all doom and gloom (shouldn't have read some other web sites!!). As a radiographer I only see people in the later stages of this disease and at the moment I am completeley symtom free and as Teds31 says I do feel a bit of a fraud, but as though I am holding a ticking bomb.

Ronnie17 Have you had or asked for a skeletal survey? if it is clear ask for an MRI. In this situation peace of mind is essential.

Thanks again to everyone I dont feel alone anymore

Beverley xx

[jmsmythParticipant]

Hi Ronnie

My Husband smouldered for 6 years. He had pain in his ribs and complained for 18 months to consultant. Frank did tell her that it was muscular. She sent him for a skeletal and an MRI which showed up nothing. She was not concerned as his proteins were dropping. After nagging she sent him for CT scan which showed up 2 lesions on ribs. Saw radio therapist who said that she did not think treatment was necessary. Turned out that Franks myeloma had changed from secretory to non-secretory.

As you are in pain Ronnie I would advise you to insist that your consultant sends you for a CT scan. She told us that the CT scan gives a much clearere photo of what is going on.
Hope it's sorted soon
Take care Jean

[Anne57Participant]

Hello Beverley

After undergoing all the usual tests Bloods, Bone Marrow Biopsy and 24hr Urine because of the presence of Bence Jones Protein, I have been diagnosed with Smouldering Myeloma.

I'm 55 (I was actually formally diagnosed the day after my birthday) my 17 year old daughter is my main support and friend as my husband works away and I have no family that lives near to me in Lincoln.

I'm trying to come to terms with Myeloma as I have already lost a breast to Breast Cancer 2010 and have Rheumatoid Arthritis for 22 years, my daughter is in a state of shock really, she has carried a lot on her young shoulders.

I am waiting for the result of my Skeletal Survey, I keep getting pin prick pains in my ribs and lower back, it can be sore but comes and goes, but the pain isn't there constantly.

Is this how things are in the beginning?

Hope I haven't bored anyone.

Anne:-)

[Author]

Posts