[markdParticipant]

Hi. I’ve been told today that I have smouldering myeloma. My blood protein is 28. This has been a roller coaster few weeks since the high protein level was found just before Christmas. I’m told there is myeloma in my bone marrow but it is not apparently causing damage. The consultant said it was not a time for ‘doom and gloom’ but being told you have this is worrying and i have so little knowledge other than what I read here. So I am scared, confused, worried – all sorts! The next step for me is to have a PET (?) scan. then three month checks. My wife is also in shock and it sounds so awful when i tell her, and we are both lacking information and perspective. I’d be so grateful for any advice.

[geebeeParticipant]

Hi Mark

Your experience is so much like my own I can so identify! I was diagnosed as smouldering in December. Unfortunately my diagnosis took somewhat longer than yours. My initial bloodiest was back in July last year and my para protein level was also 28.6. There followed some further blood tests which took an agonising age to come back. After that I had a bone marrow biopsy and a skeletal survey.

My paraprotein level and BMB results gave me the smouldering diagnosis. My skeletal survey was clear. I’ve also recently had a full body MRI scan for which I got results earlier this week. That, thankfully was also clear.

i cannot describe the stress of the last 6 months! To go from a routine blood test to that first appointment at the cancer unit….the agonising wait for test results. The bone marrow biopsy which, for me anyway, was a most unpleasant experience. Then there’s the mental aspect of it, which from your post I guess you are also experiencing. It’s a tough lot of information to deal with.

I actually felt relieved to finally get a diagnosis as I hate uncertainty. Yes smouldering comes with its own degree of worry but as an optimist….it could’ve been a lot worse! For now my consultant is going to see me every 2 months for the usual check up and tests and long may that continue without things moving on! I’ve spent my time learning as much as I can about the disease. There’s so much good information out there, not least on this site and in these forums.

You don’t say what age you are and I’m not being rude by asking I hope. My diagnosis took so long because I’m mid forties and the consultant was pretty sure when I first saw him that I was too young to have myeloma. I think that slowed my diagnosis up.

As an aside…..my MRI scan showed up another non-myeloma related problem. A mass at the side of my spine. What this is, is as yet unknown and I’m awaiting an ultrasound for further investigation. So more stress! I have honestly had my moments of wondering lately, in down times. If I hadn’t had the blood test, I wouldn’t know about the myeloma. if I hadn’t had the MRI I wouldn’t now be worrying what’s the mass at the side of my spine. Is ignorance bliss? I don’t think so. I believe we will both benefit from hitting the ground running here. Many aren’t so lucky.

Apologies for the novel. I just really identified with your experience. I hope you can get to a stage where you accept what’s happening and can live with it without the stress level you’re experiencing now. I never thought I’d get there either! But I have and so can you.

All the very best of luck to you Mark and I hope to hear more about how you are going on. Take care

[markdParticipant]

Thank you so much for your responses. It is so good of you and has really helped me. I’m 48 and to be honest I dont know what to think. But I’m very scared.

the consultant seemed slightly as though I was over reacting and maybe that is a good thing. But being told you have cancer seems a pretty frightening thing!

I had the bone marrow biopsy and it was really unpleasant. My MRI scan was ok he said and there is no need for treatment. I go back to see them in three months. I am really puzzled and lost (and of course being a hypochondriac now have all sorts of symptoms!!

i am wondering about what to do in relation to telling people and about work. I just feel like I can’t cope!

[rebeccaRParticipant]

Hi Mark, Sorry to hear you are here at such a young age – I was diagnosed just before my 51st birthday due to kidney failure and following chemo/stem cell transplant I am currently in remission and I guess similar to you in that I have it, it does not require treatment and it is causing no damage for now and have bloods done every 3 months as part of the standard “wait and watch” policy – for me this is comforting as I was diagnosed at a critical stage and so take heart you will be treated before it can do much damage. I chose not to tell anyone for as long as possible as I felt this allowed us to lead our lives without the constant questions/check ups/ worry instilled on family. We all have different ways to cope but it may be easier if you can just digest and learn all about it without the added pressure of other peoples expectations/questions also. It takes a lot of time to come to terms with such a diagnose and to accept it all.Hopefully you will smoulder for many years and perhaps the time to tell is when it becomes active and requires treatment – I suggest you think carefully about the 2 scenarios of “to tell” or “not to tell” pros/cons because once it’s out of the bag there is no going back and it takes up a bit more of your time/life that I personally do not want to devote to this nasty cancer. This is a marathon and not a sprint so you can seek/digest information at your own pace as treatment is not yet on the cards so there is no hurry. I was pretty shell shocked for quite some time and only when I began to accept the diagnosis did I seem able to research it. Take care and remember “worry does not empty tomorrow of its troubles, it empties today of its strenghth”. This type of cancer is a real mind**** so start practicing good mental coping strategies now as this is what will smooth the path on what is now a rockier ride through life. Take care.

Rebecca

[markdParticipant]

By the way I should have also said, I am thinking of you and sincerely hope the ultrasound doesn’t come up with something unpleasant. The way you told your story is really inspiring and gives me hope and energy. I try to think optimisitically though in reality I am just coming to terms with this.

So grateful to you

[markdParticipant]

<p style=”text-align: left;”>Dear Rebecca</p>
<p style=”text-align: left;”>Thank you so much for your reply and such incredibly helpful advice. I’m so grateful to you. What you say makes so much sense. My head has been all over the place but reading your and the other response has been so helpful. I feel like I am thinking a bit straighter now and also feel a lot less alone for which I am so grateful.</p>
<p style=”text-align: left;”>So so much of what you say resonates with me. And your quote about worry is so powerful.</p>
<p style=”text-align: left;”>I wish you all the very best. And thank you.</p>
<p style=”text-align: left;”>Mark</p>
<p style=”text-align: left;”></p>
<p style=”text-align: left;”></p>
<p style=”text-align: left;”></p>

[cygnetParticipant]

Hi Mark – & can I echo everyone else in saying sorry to hear you have joined the smoulderers. (of which I too am one)…

Everything Rebecca says is worth reflecting on. I have read many of her posts & have followed her advice on choosing carefully who, when & what to say. Subsequently only my husband & I know about my diagnosis – apart from the medical team, dentist & physio. At the moment I feel I don’t want to be treated differently & I know telling people I have this “sleepy “cancer will change how they view me so I have chosen not to. Luckily (!!) I had pneumonia last year & have a history of back/disc problems so any blips/ excessive tiredness is presumed by others  to be linked to that. I exercise 5plus times a week & am self employed working part time. I have had lots of support from lots of lovely folk on here too 🙂

If it helps to reassure you I was diagnosed a year ago just before my 53rd birthday. My pp was 27 – everything else was OK so I am on “watch & wait” monitoring 3-4 monthly.  My pp has subsequently dropped ( yes it can do this) so has been 21, 24 & 24 again. This has stopped me panicking about topping the 30 mark. But – & this is the twist in the tale – every case is individual. Now I am learning to live with this situation I am focusing on getting as fit & healthy & stress free as I can & on finding out as much info as |I can so I know where to go if/when my time for treatment arrives.

If you or your wife have questions & want to talk to a human being, the Helpline Nurses are wonderful.

Love & hugs,

C xx

 

[markdParticipant]

Dear C

thank you so much for your response – it was so helpful and kind of you.

Everything you say makes such a lot of sense. To be honest since finding out about this on weds after an initial couple of days finding stuff out this weekend I have just been trying to forget about it – I’ve been laid low with a cold or flu so it’s been a funny time. Feeling a bit better today and reading your note made a big difference.

thank you so much and very best wishes to you

mark x

 

 

 

[davidgParticipant]

“The bone marrow biopsy which, for me anyway, was a most unpleasant experience”

Worth mentioning that entenox makes this a much less unpleasant experience. My first BMB (without entenox) was dentist-drill painfull. The second (with entenox) was, literally, a giggle. It doesn’t take all the pain away, but what is left seems, somehow, irrelevant.

[nickyrParticipant]

When I was diagnosed with MGUS (a sort of pre-curser to myeloma) a few years ago I decided not to tell many people about it (only a few family members and my closest friend).  After all I wasn’t ill and apart from the worry of 6 monthly blood tests there were no symptoms or problems.

However when I was diagnosed with myeloma my mindset was somewhat different.  For a start I was told I would be unable to work for a considerable length of time (my back was broken) so my manager had to be told.  Subsequently my work colleagues became aware (I eventually had to retire) as did my extended family and network of friends.

I decided to be very open about my diagnosis and even to blog about it (amongst other things!).  My rationale was that if my experiences meant that just one person suffering with this awful cancer was helped or reassured by my musings then my openness was worthwhile.

We all suffer differently and there is no right or wrong approach, so only you can decide how you live with this.

Anyway, my thoughts and prayers are with you of course 🙂

[Ang287Participant]

Hi Mark
My husband was probably smouldering for years and unaware of it. He had many pains with hips and back over the years and put it down to his gout. He was diagnosed at the stage of having had a bad back where he would collapse to the floor and after 5 months of intense back pain and physio that made things worse he had an MRI scan which confirmed fractures of his vertebrae and then his treatment started. If we had known in advance he was smouldering the fractures might not have got as bad as they did and his treatment could have started sooner and he would not have been diagnosed at Stage 3. However, maybe he has had less worry as he did not have the smouldering years to worry about. I wish he had been diagnosed earlier though and then we could have been more prepared for the bombshell that hit us and he would have had good monitoring which you will now have. However, he has been very lucky so far and now 2 years in full remission since his stem cell transplant. He decided to give up work at 57 after stem cell transplant as his teacing job was being restructured and he is now doing things he enjoys – he is at his art class this afternoon. Good luck for the future and I hope you smoulder for a long time yet. xx

[markdParticipant]

Thank you Rebecca and Nicky for your posts. I really appreciate it. I’m still in a bit of a state of confusion but your words are so helpful.

thank you so mich

mark

[gcoulterParticipant]

Hi Mark

My wife was diagnosed almost two years ago (aged 48) and we felt exactly the same as you do now, scared confused worried.

Edel was diagnosed after having pneumonia for the 2nd time in two years, she had x-rays, a PET etc and after a bit of deliberation they put her on a watch and wait. Although her protein levels were almost 40, as it was not doing any other damage, they decided not to intervene at he time. Since then she’s had an appointment every 6/8 weeks. In fact at our appointment before xmas the consultant remarked, normally medicine is all about treatment, but this is the only time I can say, look at the effect of doing nothing! She was as healthy as she had ever been.

As someone else had said the first six months is tough, mentally. Forget about protein levels, bloods, etc, it’s the bit between your ears is the hardest bit to cope with. We decided not to tell others (apart from our sons) initially mainly because we found it hard to mention the word myeloma or cancer to ourselves let alone anyone else. However after a while we adjusted to this and are now much more comfortable talking about it.

It is a huge adjustment, but with the support of others you will be able to get through it. Rebecca’s advice is good, this is a marathon, and there is no right or wrong reaction to it, or whether you should share it with others, it’s an individual choice with whatever you are most comfortable with. Edel choose “on a need to know basis”, as she didn’t want to be overwhelmed, whereas I did more research initially and passed on information at a time when she felt comfortable to know a bit more.

In the last two years we’ve generally went about life as normal and squeezed in as much holidays as we could manage/afford! Our tips would be to give yourself time, you will adjust, drink plenty of water, and always have some hand gel with you. We were in Portugal in November and were saying to ourselves we really didn’t imagine that over a year later we would be on holiday soaking in the sun!

Good luck and take care.

[markdParticipant]

Hi there, thank you so much for this reply and your reply to my other post: I really appreciate you taking the time to send these responses. It helps so much. It’s definitely the bit between my ears I am finding most difficult!

To be honest the consultant didn’t say anything about water so I will now take that up! I have never drunk enough water so will use your tip about getting a jug going in the morning.

On the hand gel, I guess this is to avoid picking up infections (obvious really isn’t it). Ive had a cold for weeks which has been worrying me. It raises a question for me that I’ve been puzzling about: although I am smouldering and therefore don’t need treatment, will I experience symptoms? As you can tell I am pretty confused!

 

Thanks again, so much, for your response. I can’t say how much the words you and others have offered me mean to me.

 

Mark

[janebParticipant]

Hi

my husband was diagnosed with SMM in Nov last year age 44.  PP and all other blood levels remain reasonably stable. But latest bloods show that cretanine  levels have gone above normal range indicating some renal impairment. We see the Consultant tomorrow but are very concerned that this may be the MM becoming active. Anybody any experience to share on renal problems? All advise would be greatfully received. Understandably very anxious about tomorrow’s appointment.

Jane

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