[kpParticipant]

Hi, I have just had a confirmed diagnosis of Asymptomatic (Smouldering) Myeloma, no treatment, two monthly monitoring but come back sooner if you have any changes or feel more fatigued. I was also given a diagnosis of Haemachromatosis which needs treatment. I have been referred to Gastro and I am waiting for an appointment.

I asked to see the GP in January because following routine blood tests last year I was asked to have repeats in October and then again in January with no real explanation as to why this was required. After the October test I had heard nothing from the Practice and so was very  surprised to be sent yet another blood form. The GP was great and did as much as was possible through the practice to try to determine what the problem was. The GP suggested to me quite early on that it was Haemachromatosis because of the raised Ferritins.

My husband and I have had a confusing few weeks as I was told at first could be one of three things, MGUS, Asymptomatic Myeloma or Active Myeloma.
Initially the Consultant Haematologist thought MGUS but has now said that the paraprotiens too high for this to be the diagnosis.

Feeling a bit battered and uncertain about the future and reading through the information on the internet am still wondering why they have decided that watch and wait is the best option and don’t start treatment just because the Myeloma hasn’t managed to damage organs and bones.  It was hard to tell my family my diagnosis, especially as I think I feel and look well at the moment and I am not having any treatment.

We wanted to go on holiday, and posts I have read seem to suggest this is OK but the Consultant advised only to book and go immediately after I have had a two monthly monitoring, so no advance planning advised. This makes me think I could tip over to active Myeloma and require treatment very quickly.

Does everyone feel so confused at diagnosis? I am trying to enjoy every day and not worry about what the future might hold but at the same time try to learn more so I can have more effective consultations with the Haematologist. I am a bit like a rabbit in the headlights by the time I get into the consulting room, especially after an hour and a half wait.  I don’t even know exactly which type I have except I have raised IGg and Bence Jones Protiens positive.  Although I do think I am very lucky to have been identified early through routine screening.

I tried to find out if there is any link between the two conditions but didn’t really follow the scientific papers that I found on the internet.

[rebeccaRParticipant]

Hi there, Sorry to hear what’s happened to you, myeloma is a tricky condition and takes quite a while to understand it (if one ever does). If you look through the Information section there is loads of easy to read literature explaining all about MM and the treatments. It sounds like you have the same type of MM as me – IGg (which is the most common) and light chains myeloma (hence the Bence Jones +ve). Treatment begins when the MM starts causing you problems eg bones, kidney, anaemia – as your light chains go up in number this means that it is becoming active and treatment starts before it can damage you. Your bloods will be their indicator along with a test to measure the levels of light chains. Unfortunately, its a watch and wait scenario but the good news is that you will definitely commence treatment before damage occurs. A lot of us are diagnosed at crisis point when damage has occurred. As you can never really get rid of MM and it is a cancer of relapse and remission I guess they don’t want to start on the treatment road until absolutely necessary. Please be reassured that there are many treatments available and many in the pipeline but we all really want to know we have as many treatment options in front of us rather than “used” and behind us. You describe exactly how everyone feels at diagnosis and the feeling like a “rabbit in headlights” takes a long time to lose – if ever. Unfortunately you are now living with “uncertainty” so learning to live in the present rather than the usual planning ahead becomes a hard lesson to learn – taking it a day at a time and slowly reading up on it and digesting it will become the norm. As you are new to this I would try and restrict trawling the internet for everything related as it can be very scary and there is much out of date statistics bandied about. This is a cancer which has in recent years rapidly advanced in treatment options so please don’t go looking at survival statistics etc as many are from when treatment options were much less and pre the new novel type drugs in use. This is a very good site and if you have any questions about anything you can guarantee someone will have “been there and done that” and can help you. I wish you all the best and hope treatment is a long way off for you. Please mnake the most of this time and travel etc after your 2 monthly monitoring and treat yourself. When treatment starts it can be for up to 6 months – but I went abroad whilst on treatment as the treatment was not really affecting me, as have others. Best wishes,

Rebecca

[kpParticipant]

Thank you Rebecca, all good advice and you are right, some of the information out there is very scary. I have found this site very helpful and hope that in future I too can contribute and support others on this confusing journey.

Kind regards Karen

[keithmtParticipant]

Great advice as always from Rebecca. When I was diagnosed I as also asymptomatic but my paraprotein levels were at a level (57) where my Myeloma was active and I was put on treatment (CDT) straight away. So it doesn’t feel like they wait until damage starts to appear until they start treatment, at least, not in my case.

Thoughts are with you as you start your journey.

Kind regards

Keith

[teds31Participant]

Hi Karen, I have been Smouldering now for about 7 years I know that I’m lucky and every one is different, but thats how it is with this MM you cant tell and as there is no cure as yet so as my consultant says enjoy it while we can. Rebecca has given good advice , keep in touch on this site and ignore all the others,you will get lots of help and sympathy. all the best. Ted

[kpParticipant]

Thank you to all for your replies. I guess the message is “stay positive, live your life each day and get used to the uncertainty”.

I have never  lived my life in two month time slots and so this might be the hardest bit to adjust to. Otherwise I have always been a positive person and hope this will help me through the next few months as I adjust to a diagnosis of a cancer which is treatable, but not curable.

I didn’t ask what my paraprotiens were on my last visit Keith, too shell shocked I think that I had moved from MGUS to Smouldering in only two months. I hadn’t expected that but from reading I have done I guess this means they are over 30.  Maybe I should be asking for copies of the blood test results, do other people do this?
There do seem to be a lot of people who are very well informed about their MM status but I am not sure just how much I want to know right now.

I was pleased for Ted when I read he has been Smouldering for 7 years, I hope this continues for many more years Ted.

I am a bit of a fan of the Tolkien Books and loved the scenery in the films Jane, New Zealand looks like a beautiful place. I feel better knowing that I can continue as usual except it has to be last minute .com for holidays.

Best wishes to you all, Karen

[rebeccaRParticipant]

Hi, if you ask for your blood test results they will print them off you – but it is hard to gauge how much info you should have as trust me, if you have it in hard copy, you’ll try to analyse everything. In my 1st year of treatment I only asked for 3 no.s but when I had my SCT (at xmas) I started asking for the prints and quite honestly I think just knowing the main thing – heamaglobin, neutrophils, kidneys is all you need to know. At first diagnosis I chose not to know/ask too much but slowly started looking, followed by obessively looking (a habit I am still struggling to break). I thought after my SCt it would be different but my results were mixed and am now on a 2 monthly test/consult. Myeloma is an endless mind game, if you let it be, when on treatment you are focussing on remission when told in remission you are then wondering how long – this bits new to me and I hope I can manage to put it at the back of my mind more as time goes on – guess it will depend on my next results!The main thing is to live your life as you wish to live it and to remain very positive – as it’s miserable being miserable! Act as if what you do makes a difference. It does.
Rebecca

[keithmtParticipant]

Hi Karen,

Like you, I was astounded at how much medical detail people on this forum had about their situation. Light chains and all sorts of other things I’d never heard of or been connected to. The only number I was connected with from the start was my paraprotein level which my consultant told me about at the end of each monthly drug cycle and I found it very motivating to know they were dropping each time. Not sure how I would have felt if they weren’t dropping though.

Like Rebecca, when I was in hospital post SCT I was keen to know how my bloods and immune system were recovering and the nurses printed out the full month of my daily tests.

As Rebecca said, it’s important not to get too hung up about numbers but having said that, I think it’s one thing we can track so it’s difficult not to get attached to them.

Keith x

[rebeccaRParticipant]

Hi Keith – talking about getting hung up on numbers -when you posted yours the other day ( which are absolutely fabulous by the way – especially white blood count) I had my prints so went to look at mine to compare – mine were 4 months post SCT neuts -just under 2, wbc at minimum, platelets at minimum. I know my bloods are always poor, presuming due to severe kidney damage, but comparing sent me off on a downer for a while! am I very prone to infection still? etc (which I am). I had to think hard to come out of it and that is I feel really fabulous, look a picture of health, never have a hair out of place! – tho I have rubbish bloods. Last week I played 2hrs doubles tennis in the morning and then in the evening played 2 doubles matches in a league which lasted 3 1/2 hrs! felt very tired next day but so did everyone else who played. My fitness levels are really good now and that’s what I/we need to judge ourselves on more – just how well we feel and the quality of life we have – the rest is just detail. Mind games – determined to win it – Take care
Rebecca

[angeParticipant]

Hi Karen – I was diagnosed with smouldering myeloma from a routine GP blood test in August 2012. It was a complete shock and the watch and wait was difficult, not being able to plan anything etc. I started treatment this April and am now on my 3rd cycle of CTD. I am glad to start treatment and feel very lucky that I was diagnosed early before major problems developed. It is very confusing and every patient is different. Try not to worry and just go along to your appointments and ask questions. I find the Myeloma Uk Patient Diary very helpful and I just ask them to fill out the blood test results for me in that section. My family have also attended the Information Days with me which are very good. It is a different life since diagnosis which I am still trying to come to terms with! Best of luck, take care, Andrea xx

[kpParticipant]

Hi Andrea, I think I am lucky as well because of early diagnosis. I am trying not to worry ( not always easy) and really appreciate all the helpful responses I have had to my post.

It is certainly a different life, I will request a Myeloma UK Patient Diary which I am sure will be helpful.

Best wishes with your treatment.

Karen

[susieParticipant]

Hello Karen

I read your story with much interest. Would you mind telling me what reading your paraprotein was that put you into Smouldering. I have MGUS and my last bloods showed a PP of 36 but my consultant has only increased my check ups to 3 monthly from 4.

I wish you the best and hope all goes well for you.

Susie

[kpParticipant]

Hi Susie, you might think I am a bit hopeless, but I didn’t ask. The Consultant said ” the proteins are too high for MGUS so you are asymptomatic”, told me the management plan and I scuttled out of the consulting room.  I have requested a diary and am going to get all my results to date recorded for me at my next appt.

I am on two monthly monitoring but everything I have read so far indicates if pp’s over 30 then it is not MGUS, it is asymptomatic.
I asked about the bone marrow biopsy but Consultant said it would only confirm what blood test results indicated. Purely scientific at this point in my journey and only to be undertaken “when” I need treatment.

It is so confusing, and you must be concerned between appts, I know I am and I have only had two so far.

Very best wishes

Karen

 

• This reply was modified 9 years, 11 months ago by  kp.

[susieParticipant]

Hi Karen

I can well understand you rush out of consulting room. It comes as such a total shock. I have carried on as normal over these last 2 years, understanding that very few MGUS proceed on to become active Myeloma, so haven’t worried. But now i am beginning to do just that. It’s like sitting on a time bomb isn’t it.

Keep well and I hope you remain stable.

Kind Regards

Susie

[susieParticipant]

Hi Jane

Yes I did have a bone marrow biopsy when I was first diagnosed, so thats 2 yrs ago. It was 2-3 %
so well under the 10% mark for smoldering as I understand it.

Quite frankly its not the disease I dread, its having my life taken over by hospital appointments, doctors and treatment. That is what would drive me round the bend.

I hope all goes well for you

Take care

Susie

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