[briananParticipant]

I have recently been diagnosed with smouldering myeloma. I’d appreciate some advice concerning treatment at this stage.
I do not yet have any symptoms though my consultant haematologist was surprised about this considering some of the test results.
She has put me on a course of bisphosphonates infusions; I had the first one a couple of weeks ago and fortunately I did not experience any side effects.  Have others found this treatment to be effective?
I am wondering what else I should/could do at this stage.  Are there any views on additional treatments? Perhaps something that is currently undergoing clinical trials?
I am also thinking about seeing a consultant who specialises in myeloma. I have a list of six specialists based in London.  Has anyone benefited from going down this route?
Many thanks in advance for any thoughts on the above. (Perhaps some of my questions have been answered in previous posts; any pointers to these would be appreciated.)
This is a great website; it’s very reassuring to know that it’s possible to get into contact with others in the ‘same boat’!

• This topic was modified 9 years, 8 months ago by  brianan.

[robert0439Participant]

Morning Brian,

Welcome to this awful club, as I too have just been diagnosed with smouldering Myeloma.

It is interesting to hear that you are on a course of bisphosphonates infusions which I must admit, I am somewhat ignorant of however, thanks to Google I now know they are related to bone and calcium issues.

Do you know your calcium levels and also, have you had a skeletal scan and if so, did it show any bone lytic lesions?

Because I too am showing no symptoms, my haematologist is suggesting a programme of “watch and wait” which I am struggling to do. Some may find my strategy a little alien however, I have started to take a selection of nutrients with the goal of staying at the smouldering stage as long as I possible can.

At the moment it is far too early to say if they are having any effect however, I am also tracking of my blood readings so I guess only time will tell.

Stay well and stay smouldering.

Regards,

Robert

[martinebbageParticipant]

Hi Brian

I am in exactly the same position since being diagnosed at the end of June 2014. Having had all the tests MRI, Pet Scan, Full Body x ray, Bone Marrow test, blood tests , Urine tests it is now a waiting game, I too feel fine with no pain. However, every time I get a pain or ache I think the worst. I am on regular blood test and visits. Due to see my specialist again on the 07th Oct. My view is that we are the lucky ones at the moment, it seems there are a number of treatments but as it is so individual, I guess no treatment and nothing will happen until something rears it’s ugly head. In the meantime staying very positive and getting on with life.

Good luck and as Rob says “stay smouldering for as long as you can”

Regards

Martin

[briananParticipant]

Hi Robert and Martin

Many thanks for your replies and best wishes. It looks like we are in the same position – lots of tests but no symptoms for the moment. (Did not enjoy the bone marrow test!)

My haematologist recommended the infusions because they can – apparently – reduce the possibility of future bone damage.  I was not too keen on the idea (having read about possible side effects etc.) but, as I said, the first infusion went smoothly with no obvious side effects – so far!

I get the impression that there are lots of possible treatments – depending on the stage that the myeloma has reached.   I also suspect that different consultants have different opinions on what is best.  There is certainly a lot of useful information online. I probably will talk to another consultant, in London.

I’ll report back here on anything useful that I discover.

All the best

Brian

 

 

 

 

[jmsmythParticipant]

Hi all

My husband Frank was diagnosed with smouldering myeloma in September 2006. He had all the usual. BMB, scans etc. the only treatment he had was Zometa, bone strengthening infusions. Last year in April my husband was turning 70. Although his blood results were good and felt ok his consultant decided to do a SCT. He went through this in March and although it took some time he is doing ok. In retrospect we both think that the SCT was carried out because of his age. Here in Northern Ireland they don’t do SCT after 70 and the consultant thought it would be the best road to go down. I hope you all smoulder for many many years and live life to the full. After 8 years we are still doing it and pray that there are more years ahead

Best wishes to you all
Jean

[briananParticipant]

Hi Jean

Many thanks for your encouraging reply.  I very much appreciate finding out about the experiences of others in my position.

Best wishes to you and Frank.

Brian

[kpParticipant]

Hi Brian

Sorry to welcome you to the MM club. I got a lot of helpful advice on the “confusing journey” thread.

I too hope to stay asymptomatic for as long as possible. The hardest part has been getting my head around the no treatment until there are signs and symptoms that the MM is causing end organ damage. It has been described as the Sword of Damocles, which is exactly what it feels like.

Stay well

Karen

[andygParticipant]

Hi smoulderers. I think that is right.

Although there are a lot of treatments out there. Not all work for everyone and to date all seem to fail eventually even if they do work initially. So the longer you can put off starting the treatment journey the better in my opinion.  Bisphophanates are used to strengthen your bones due to Myeloma being good at weakening them and causing breaks and damage to your spine.

The good news is you can smoulder for years before you have to embark on treatment.

Every day is a gift.

Andy

[docmikeParticipant]

Hi Brian,
I,ve been smouldering for 6 years but am awaiting my recent bloods results which may change my status. Bisphosphonates have been mentioned as the next step even if i have not progressed.
Kp s thread on a confusing journey is well worth looking up .Martin has had a pet scan which I suspect is the best test to reassure you are a smoulderer if it is negative .But it is expensive and rationed accordingly by the radiologists( just as they did when ct scans and mri s entered the clinical arena; I happen to know this because I am doctor) .
The dilemma of SMM is accurately predicting those who will progress with a 100% accuracy before damage is done because treatment( at the moment) is not without side effects .Hopefully you are stable and you will get used to the regular blood tests in between which life can can go on as normal once you have answered all your questions at this initial stage . In that respect the contrary advice may be to visit this forum infrequently .
Mike ( was on the forum as docmike previously )

[briananParticipant]

Hi

Many thanks to Karen, Andy and Mike for their very helpful replies. I feel that I am getting a better perspective on the condition and that has given me at least a glimmer of hope about the future!

I am very keen to investigate treatments that may/can be useful at the smouldering stage.  If I discover anything useful, I’ll start a new topic on the subject.

All the best

Brian

 

[cartdawParticipant]

hi brian  I have also been diagnosed with smouldering myloma i am 57 yrs and feel healthy at the moment.  I have blood tests every 8 weeks and so far all still stable.  my paraproteins are 21,   Iv had the bone marrow biopsy which was quite high apparantley but the skeletal survey was normal thank goodness.   I hope to have a few years yet just smouldering

[briananParticipant]

Hi Cartdaw

I’m in a very similar position to you – although I’m ten years older .  I’ve recently had my second infusion of Bisphophanates and have experienced no side effects – so far.

I am now arranging to see another consultant who I believe can advise me on other possible treatments and trials.

Best of luck to you!

Brian

 

 

• This reply was modified 9 years, 7 months ago by  brianan.

[Anonymous]

Diagnosed on 15th October 2014 aged 49 bit of blow to head wasnt expecting to be told that it was asymptomatic myeloma had been told they thought it would be MGUS as paraprotein level only 8 kappa lamba ratio normal beta 2 1.4 calcium normal  all other blood results in normal range and 2% plasma cells in my bone marrow biopsy but criteria has changed but  the consultant was very off hand and wouldn’t tell me what criteria just wanted to give me a booklet to read and get me out of room ASAP as they were running 50 mins behind not the best start to my new journey so really pleased I have found this forum. I am currently feeling okay paraprotein was found during a routine blood test but I have decided to look into upping my supplements along with any other dietary changes I read about on here. Look forward to getting to know you all.

[robert0439Participant]

Hello Helen,

A warm welcome to the forum.

May I ask exactly what supplements you are taking or, thinking of taking?

Regards,

Robert

[Anonymous]

Hi Robert I have always taken multivitamins with iron but this August when routine blood test showed paraprotein I started looking on Internet for what this could mean which linked me to Margaret’s corner in Tuscany and I saw the link to turmeric so been the pessimist I am on 29th August started taking thisilyn turmeric xtra from boots but only half a tablet a day which equals 1000mg turmeric even though I hadn’t yet been diagnosed. I have also just ordered the pomi t tablets to give them a try and just waiting for blood test results for vitamin d level and if I need to take extra.. Game to try anything that doesn’t involve medication at this early stage as you never know. I had also changed to a lactose free and gluten free diet in July before the routine blood test as I was so fed up of bloating stomachs and my aches and pains from arthritis so it’s gonna be a huge learning curve but first of all I think I need to find a consultant who knows what she is talking about my GP seems to know more than she did.

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