[HarmonyParticipant]

Hi Michael,
Just wanted to tell you that your post made me (a smoulderer) feel positive and uplifted. I’ve just finished reading a very sad but beautiful and realistic fictional novel about young cancer victims entitled ‘The Fault in Our Stars’ by John Green- which left me feeling low- so you provided a good dose of hope – thank you. I was particularly interested in your comment about the risk lowering after 10 years because I read this too – but my consultant contradicted this by saying that risk increases the longer that you smoulder. She convinced my because cells mutate – so the longer we have them the more they’ll grow.. Please let me know your view

[kpParticipant]

Hi All,

I too felt more settled after reading Mike’s post, particularly after appt this week when my status was described as “relatively stable”.

Just to note how difficult people find it before their appts, my husband and I (along with the rest of my family) are so anxious and twitchy and frightened. It is such a relief to be told , see you in six weeks although my PP’s and FLC’s continue to rise steadily with no signs of end organ damage there is reassurance in frequent monitoring. The Registrar told me they would intervene rapidly if there was any sign of a change ( I gave him a copy of the review paper re updating criteria Mike highlighted in another thread and asked questions about management of my ASM which he answered and he accepted the paper with equanimity and said he would read it).
He must have thought I was really intense as I ended up perched on the front of the chair and leaning so far forward towards him I was in danger of falling off.

Keep smouldering,

Karen

[robert0439Participant]

Hi Karen,

I can certainly relate to the increased anxiousness as you get closer to that 6 week/8 week blood test. Sleepless nights a week before the test in conjunction with being a bit of a grouch – so my wife tells me!  I saw another consultant last Monday at my local hospital who asked me how I was? I responded that I had actually come to the hospital for her to tell me this! Anyway, she asked if I had had, my flu jab as my immune system was pretty low but went on to say that she could not speak too loud as she had a terrible cough and cold. Following this revelation, I moved a little further away from her…  My good news was that I too was considered to be stable and over the last 5 months where I have had now 4 blood tests, my PP levels have been 27, 26, 27, and 26 so am as happy as I can be as a smoulderer.

I am doing whatever I can to remain at my current smouldering level by taking a regime of supplements which keep me a little happier than if I were to do nothing.  I did mention this at my first meeting which was met by raised eyebrows so following this, I keep whatever it is that I am taking to myself, as I know that as not being on medication, they will do me no harm however, doing what I am helps me mentally and hopefully, will help me keep at the smouldering level.

Warmest regards,

Robert

[HarmonyParticipant]

I’m with you all on the pre-appointment anxiety. I’m also putting my poor mum, sister and husband through sleepless nights and worry when it comes to ‘that’ time. Rather irrationally, I find myself demonising the consultant by thinking ‘I wonder what that bloody woman will come out with.’

Robert – I’m with you on the supplement thing. It’s just our way of trying to grab the steering wheel! My G,P mentioned knowing someone who was diagnosed in his 40s and was still smouldering at 80 – I wonder if she was either making it up or I misheard..

[docmikeParticipant]

Dear Chrissie,
Like Helen ,your question highlights the complexity of myeloma and the gaps in our knowledge in predicting the outcome in smoulderers(SMM)
The largest study on SMM was published in 2007 and this is still regarded as a sentinel reference and was published on both sides of the atlantic . The retrospective study was conducted at the Mayo clinic ,involved 276 patients with smm followed up from 1970 to 1995.Yes it took 25 years to accumulate enough patients in a highly specialised cantre and that long to discern the pattern of outcomes.The risk of progression overall was 10 % per year for first five years ,3% per year for the next 5 years and 1% per year the next ten years (MGUS like risk)
(3% patients under 40 )
As far as I am aware there has never been a uk study of this scale so UK haemotologists may depend on their own (anecdotal) experience according how many patients with smm they have observed and their outcome which may not be representative .
More recent studies (non from uk)have tended to concentrate on defining the criteria to
ascertain the parameters which determine progression with more certainty altho I think the latest quotes 80% risk in two years ;100% certainty not yet predictable .
In the 2007 study 13% of the highest risk group did not progress after 15 years of follow up why?????
We need a study in the uk to audit the outcome in smm but it may only help patients in your position in 20 years time .
lots to think about !!! so lets stop there
Mike

• This reply was modified 9 years, 6 months ago by  docmike.

[HarmonyParticipant]

Dear Mike,
Thank you for your response- I’m hanging onto the Mayo Clinic’s 2007 results! We look for any ray of hope, don’t we? You say that you’ve been smouldering for 6 years which sounds pretty good -have you adapted your diet or taken supplements or done anything to maintain this? In 6 years time, my daughter will be seventeen and my son fourteen. If I can smoulder for a few more years, my position will be so much better because they’ll b much more grown up. I’m forever bargaining with God. Do u find yourself doing the same? I try not to b too greedy for asking for too much – but it would be lovely to get to 50. Life on the edge of a precipice- it gets to me at times although I try my hardest to keep in good spirits. Do you manage to NOT think about it. After a year of diagnosis, I still find it hard to go for a whole hour without thinking about it.

[rebeccaRParticipant]

Hi, I’ve just been reading this thread and actually smoulderers are, I feel, just like MMers but in a longer remissive state as we are all on watch and wait but MMers have been on some treatment and I think tend to just look for “time not off treatment” period when you feel well and can enjoy life. I was diagnosed 2 yrs ago, SCt last xmas and now, just like you – but with less odds – on wait and watch. I know how difficult this is, especially with dependant children, but if there’s one thing I would like to pass on to you it’s that this is a lifetime commitment now – you’ll never reach a conclusion when you are not on “watch” and so you must train your mind to cope with the enormity of it all to lead a happy life. MM needs to be shut in a box most of the time and you can achieve this with time and practice. We all get through this in various ways I have always used exercise and to a large extent total denial of it – I have kidney issues and so when diagnosed just told everyone it was the “kidneys” and I only told my parents and sibling 1 yr later as I went for harvesting and SCt and I knew I would be away for a while and lose the hair! I only ever talk about it on here now and I like to keep abreast of news/treatments/experiences to store for future use. I went to some mindfulness lectures from a Buddhist which proved very useful and tho wasn’t earth shattering just reiterated common sense – live in the present – we all choose how we feel and react – emotions are internal to us so you can choose to be “down”/worry etc and ruin your own day or you can choose to be “happy” and change what we are in control of and accept/come to terms with what we can’t. I know this is easier said than done and I am not doing a Mindfulness course justice at all but it really did help me regain peace and train my mind much more and I believe Drs can refer you to such courses. I think, how we react to things affect the whole family and so we can create much anxiety or calm. After SCT everyone became on tenterhooks on my 2 monthly tests – I told them all was OK the first testing but slowly told them I wouldn’t be making a big deal out of it with announcements every time as it is just something that has to be done from now on and I would just get on with it – wouldn’t be secretive tho. So if I see them after an apt I may mention it casually that all was well as tho I’d been to the dentist. I also stopped telling my husband “it was time” as he gets very anxious and as I am well and act well over time it has now become an insignificant part of everyones life. Even I don’t worry now as I don’t want to waste my “well” time on negative things that I cannot alter I judge/worry based on how well I feel and that is my gauge. I do not really have any discussions about it – except on here – as I think doing so with loved ones brings them unnecessary dark thoughts. Obviously all of the above is on a watch and wait scenario where tests come back ok. I know from your posts you put on a good front for your kids and family but you can train your mind with discipline for it not be a “front” and for it to nearly always be your state of mind. Now is the time to invest in methods and techniques of the mind to stop the inevitable inner turmoil and this will put you in good stead if you need treatment when the inner turmoil steps up a few notches. There are lots of good interesting books out there relating to mindfulness, the mind influencing the body etc all good stuff. I come on the forum a lot so I do still think about it but I have lost the anxiety of it all – I used to come on the Forum anxiously looking for information/reassurance etc and now I look just “out of interest” as tho I’m keeping abreast of current affairs only and that has been a massive leap for me. You are right when you say life on the edge of a precipice but if you live on the edge constantly the fear naturally diminishes and the usual complacency of “oh well,what the hell” will eventually come also. This is the biggest mind game you will ever play so we should all be smart and invest the most resources in the mind – this will be the deal breaker. Be kind to yourself, stay out of the shadows and in the sunlight – it is said a minute of worry is a minute of lost happiness. This condition helps you focus on what’s important in life – never done so little housework and never enjoyed so much “me” time as I do now (would of course swap it back in a heart beat!). Take care,
Rebecca

[Anonymous]

Thank you Rebecca x

[HarmonyParticipant]

Hi Rebecca.

Thank you. Your post is inspirational.I have a head v heart thing going on. In my head, I know that I have this thing and seek information but in my heart, I want to run as far away as possible and wait for someone to wake me up from the nightmare -but everybody feels the same.

3 thoughts that calm me are – all humans are mortal so by definition, we are all terminal; nobody knows what will happen tomorrow; everybody has to die of something in the end. We just have a microwave version of human experience.

Best wishesx

[martinebbageParticipant]

Hi Mike

Are you saying that there is a study that exists saying that a smoulder has an 80% chance of progressing to MM within 2 years? or I am hopefully mis – reading what you are saying? if that is the case then I need to re think a few things. Having a poxy day, mind running on overtime, sure tomorrow I will have my positive head back on !!!

[cartdawParticipant]

hi all my friend has a friend who has had myloma for 20 yrs and is now in her 70s.  started with smouldering myloma but now myloma.  She apparently hasn’t always been well but has treatments and remission etc. and is still here. so I try to keep as positive as possible.  Most of the time myloma is at the back of my mind ( I was diagnosed as a smoulderer in June this year) apart from my 8 week hosp appts, then I get a little bit anxious.  – Dawn xxx

 

[daisychainParticipant]

Hi Rebecca

Your post was really inspirational to read. Thank you. I am totally In tune with your comments.

However, Whilst I’ve read all the self help books, mindfulness, counselling etc. to get me to the emotional state you mention. as soon as I get a “blip” with my results/need to change treatment. All what I’ve learnt over the years goes right out the window!

Best wishes to all

Dawn x

[docmikeParticipant]

DEAR MARTIN ,
This is the thread which may resolve your concern about about 80% risk which has now become 90% risk according to the experts who indeed have access to the best retrospective patient data to make that guideline

Dear Smoulderers .

We all have two contrasting thoughts.Fistly we hope we will smoulder forever and never require treatment .But secondly if we do require treatment we would wish to be treated at an early stage before organ damage ( ahead of the curve…. medspeak)occurs but when progession is 90%+inevitable ( nothing is ever 100% in medicine I am afraid ) .The International Myeloma Working group has published an updated crteria which addresses the latter issue in Lancet Oncology online ,Lancet Oncol 2104 ;15;e538-48.
The new criteria which require treatment are

EITHER
Bone marrow plasma cells >60%+,
A serum free light chain ratio of >100 (affected light chain /unaffected light chain )
>1 Focal lesion (>5mm) on mri (preferably whole body mri which may not available in uk except in nottingham in the future?)

other imaging modalities may have a role to play and the appropriate redefintion of renal impairment has ben addressed . This article is the watershed in how smouldring myeloma will be managed ‘
Mike A
ps I have suggested to the webteam that there is a separate thread for smoulderers on the forum to prevent repetition and reflect our specific interim state !

October 28, 2014 at 12:31 pm

mike

• This reply was modified 9 years, 6 months ago by  docmike.

[martinebbageParticipant]

Hi Mike

Thanks for the information I think I was just having a bad day yesterday, my other positive head is back on today. I have but my paranoid negative one back in the cupboard, sorry if my note was a bit short, I did not mean it to be. It is guy’s & girl’s like you that make being on this site so worthwhile, to such a novice like me.

Thanks

Martin

[docmikeParticipant]

Dear Chrissie,
Yes your cells will mutate but the next dominant clone that takes over may not be as clinically agrressive /significant presumably by suprressing the bad clones .We are all here because of mutations millions of years ago .
Mike

[Author]

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