[beverleyParticipant]

Hi
I was diagnosed in 2011 after blood tests for irritable bowel!!! I had a bone marrow biopsy to confirm MGUS but unfortunately I was a bit further on and was diagnosed as smouldering. I have an outpatient appointment every 4 months and I haven’ t a clue what any of my blood results are. This is my way of dealing with this silly disease and it is a bit like burying my head in the sand. I go by the principle that if I need to panic my fabulous consultant will inform me when and how much. I am not being flippant , but what I am saying is that there is no right or wrong way of dealing with this and it is a very individual choice. If you need to know all your results then that is your choice but don’t feel that is the only way.
I am a radiographer and I diagnose breast cancer so I am not stupid when it comes to the effects of cancer.
You will get great advice on this site, so take care and enjoy yourself as we could smoulder for years. By the way I take bisphosphonates as my consultant told me there is some evidencethat this slows down the onset of active myeloma. She says the jury is still out on the evidence but every little helps

Take care
Jill

[docmikeParticipant]

Dear Karen,
Ive had smouldering myeloma for nearly six years and happen to be a consultant gastroenterolgist.But I am not surprised that you are confused about your diagnosis and its management .
When I was diagnosed after a routine blood test I had a skeletal survey and a bone marrow and after the latter was sent to a special centre ,I was told I required treatment and stopped work immediately . A day later I had a mri of the whole spine which showed no damage and I ve avoided treatment and have been on watch and wait ever since .My latest level of m protein is 28.5 and ive been told that over 30 is the indication for treatment (yearly mri no changes ).
More information to follow
Mike

[docmikeParticipant]

Dear Karen ,
Next instalment!
I also know a lot about heamochromatosis but to be brief ;a blood test to the local genetics lab for a HFE gene status will clarify the issue and I suspect your high iron/ferritin may be related to bordeline anemia?? in which the bone marrow does not utilise the iron as it should(my ferritin(an iron containing protein) was also raised .
No relation ,that i know, of the two conditions, myeloma and heamochromatosis .
More to information to come tomarrow to address your other concerns
Mike

• This reply was modified 10 years, 5 months ago by  docmike.

[kpParticipant]

Hi Jill, I did a literature search online and found a few papers relating to the use of bisphosphonates in active myeloma but nothing relating to use in relation to delaying onset if prescribed when a person is asymptomatic. It is on my list of questions for the Heamatology Consultant. Thanks for the information.

Like Susie I dread the thought of having my life taken over by hospital appts, but I don’t think I  have much choice at the moment and am waiting anxiously for the Gastro appt to arrive.

Thanks Mike for advising as far as you know there is no link between Haemachromatosis and Myeloma. I feel a little unlucky to get a double diagnosis. It is hard to come to terms with the dramatic change in my health status but I do understand it takes time to adjust and it has only been a couple of months since I had the positive Bence Jones and suspected that the weird blood chemistry was Myeloma.

I thought I didn’t have any symptoms but think maybe the tingling I get in my feet, and funny cramps in my fingers and toes might be related to the paraprotiens.

There is comfort in reading peoples stories particularly when they have remained asymptomatic for some years. I hope for this stability for myself, but only time will tell.

Best wishes

Karen

 

 

• This reply was modified 10 years, 5 months ago by  kp.

[docmikeParticipant]

Dear Karen.
By now you will have received a lot of information to answer some of you concerns and clearly you have also been online searching the literature for information.Multiple myeloma is a complex disease and Multiple bit is well deserved because it is a very heterogenous condition such that it is not an exageration to say every patient is different. And so it is with smouldering or asymptomatic myeloma in which the current research focuses on trying to find the clinical criteria which identifies those patients with the highest risk of progression in whom treatment might be anticipated to give the maximum benefit before bone damage .There has been a trial in Spain which has suggested that this is possible but all treatment has side effects and at least 15% of patients would not have required treatment.All the criteria used include some data from the bone marrow which thus can be regarded essential in trying to determine where you are in this disease.Imaging is also at last been appreciated as important .Measuring serum light chains is much more expensive than testing for urine Bance jones protein (light chains that past thro the kidney from the blood) but probably is more sensitive than the M spike in showing progression earlier ( NB some pateints do no secrete am M spike but light chains are always detectable ).Enough information in one bite!
Mike

• This reply was modified 10 years, 5 months ago by  docmike.

[kpParticipant]

Dear Mike, thank you for the helpful posts, I have really appreciated the information and feel much more prepared for my next appointment with the Haematology Consultant.

Kind regards

Karen

[docmikeParticipant]

Dear Karen,
One last point, on reviewing your reply ;tingling in the feet and hands (called parathesiae) if persistent (>2 weeks) could be (emphasis on could ) be an indication of a peripheral neuropathy which is not a feature of smouldering myeloma or paraproteins (unless very high with hyperviscosity )so this might be worth mentioning to your gp if it continues to be troublesome . Apology for potentially alarming you .
Mike

[kpParticipant]

Dear Mike

Thank you, you have not alarmed me. At the moment I feel that all information is extremely useful to me. It is hard not to over interrogate every thing I would previously shrugged off.

I have appreciated ( more than I can express) the advice, information and support I have received through this site.

Kind regards

Karen

[docmikeParticipant]

Dear Karen.
On a more postive note ,Ive been to New Zealand twice since diagnosis in 2008 a( my youngest son is a physio out there ) and visited the lord of the rings sites!My travel insurance excluded/s problems from smm which is more risky when ive been skiing om many occasions .Life goes on between the tests!
The risks of developing myeloma starts to decrease after 5 years and you are regarded has having mgus after 10 years (3% chance per year).
Mike

[beverleyParticipant]

Hi
I struggled with insurance as no insurance company can seem to understand smouldering, they only deal with active, and then don’t cover that!! But I am with Columbus and they have covered me, and for not much more than what a dear friend called “normal people”. That remark cost her coffee and cake

Love
Jill

[kpParticipant]

Oh my Jill, a smile moment, dear friends always create opportunities for coffee and cake.

I haven’t tried to get travel insurance yet so thanks for the information about Columbus. We hope to take a break immediately after next appt in a couple of weeks so really helpful.

Kind regards Karen

[karrieanneParticipant]

I’ll go by Karrieanne  ( there’s another Karen ). I to have been diagnosed with Asymptomatic Myeloma, having had all the scans, blood tests and the bone marrow biopsy I’m. Now on two monthly appointments. I don’t know any of the figures, that is the para proteins  and light chains etc., I didn’t think to ask for them. I’m wondering if it’s better not to know! I have had over two years of pain in my left shoulder blade, I have had radiotherapy, just one treatment, and I’m absolutely thrilled to say that the pain is almost gone. The radiotherapy and the painkillers have given me my life back. The. consultant said she didn’t think the pain was caused by the Myeloma but if it improved with the treatment then agreed that the Myeloma was the cause. Had I been diagnosed earlier I wouldn’t have had all this pain, which has had me in tears most days, unable to do normal things like ironing or standing , now I’m ‘back to normal’, I’m going to start driving again, I can stand a while and I can smile again!

A wonderful Charity called Lavender Touch, for people with Cancer in the Borders, have very kindly given me massage, a lovely lady called Jo has been twice and will be coming again to give me another four massages, such kindness. Myeloma, to me, is invisible –  no one can see it, sometimes I have really bad days others are great but on the bad days I  feel like a fraud. Does anyone get excessive sweating of your head face and neck? I have to change pillows through the night, sometimes pjs’, and it’s so uncomfortable. Is it a symptom of Myeloma? I would just like to know.

This is an awful way to live, two months at a time. I try not to think about it but it’s not easy. My eldest Son said treatment should start before I’m broken but my youngest Son says fair enough, they’ll be checking up on me regularly. I hope everyone using this site stays well, or as well as can be expected and I’ll be visiting regularly to see if you’ve got any tips for staying Asymptomatic  and whether to ask for my results on these hospital visits. Thank you for reading this.  Karrieanne x

[kpParticipant]

Hi Karrieanne, I read your post with interest. An earlier post describes life after diagnosis as having the sword of Damocles over your head. Which feels about right. It really is not easy not to think about it, I find it is the first thing in my head when I wake up and last thing in my head as I go to sleep. But I was diagnosed only a few weeks ago so hope this aspect will get better.

It was so hard to tell my family, who have been so wonderful and supportive. But I recently told a friend and she said, but you look so well you must be fine………..which I suppose I am whilst I remain asymptomatic, but it was a bit of a disconcerting response to what for me  has been a life changing diagnosis. Then someone I don’t know very well (and probably wouldn’t have mentioned my diagnosis to) asked me if I was alright because she thought my eyes indicated I wasn’t well??

I do get very hot, particularly the back of my neck which was something I had never experienced before. Since it started a couple of years ago I had thought it was a menopausal thing, and then that my internal thermostat was broken but I have read since that night sweats are a symptom of MM.

I hope you have found this thread helpful, I have had so many informative and supportive posts I don’t feel so alone.

Keep well and best wishes Karen

[karrieanneParticipant]

Thank you Karen for your reply, I was in Oz for 4months with my 2 boys and their families (my only family) when my back pain got so bad I went to their GP, within 2weeks I was diagnosed with MM. Had I stayed over there I would have started treatment the following week (March 31st) but I came home, had all the tests again and still the same diagnosis. The difference here though is no treatment, it’s watch and wait! Reading your earlier posts I can understand you feeling a bit battered and uncertain – that’s how I feel. This Cancer is frightening, can it go from Asymptomatic to Active in days or weeks? And I wonder what causes it to change. I feel very confused. I have Coeliac disease which in turn has given me osteoporosis but until now I have been well, my weight has dropped to 40kilos so I’m cramming in the chocolate! It’s interesting to know that you get hot too my Consultant said it had nothing to do with MM, I disagree, this came with the disease and it’s very unpleasant.

I can relate to how your friend says you look so well and yet an acquaintance can ‘see’ that you’re not. It’s one of those hidden things, if you can’t see it you haven’t got it. My sons weren’t shocked, they said they knew I was going downhill before I got to Oz, that’s the reason they made me go to the GP. If I hadn’t I would still be crying with back pain and getting nothing but more and more painkillers!

thank you for your support Karen, you’ve made me feel like I’m not alone I do hope everything goes well with your appointments, I hope we are Asymptomatic for a long long time. I will visit this site now and again there’s a lot of useful info, and to be honest it’s nice to ‘have’ someone to talk to now and again that’s going through the same thing. Keep us all posted how you’re getting on and I’ll do the same. Best wishes Karrieanne x

[kpParticipant]

Hi Karrieanne,

I have assumed that the paraprotien levels must have the potential to rise quite quickly, or blood test results start to show organs, for example kidneys/renal function, being adversely affected. Two monthly monitoring is maybe a “safe” option initially until a series of stable test results give an assurance that the cancer is not aggressive. I thought I would ask about this when I next see the Haematologist.

Poor man, I have an issues log a mile long now, perhaps I need to select the most important things I want to discuss as part of the shared decision making on my care.

Looking forward to hearing how you get on, you are right it is good to have people who are on the same journey to share experiences with and to learn from. How amazing is this virtual world we all inhabit now.

Kind regards Karen x

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