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Thought it was about time I introduced myself. I’ve been reading for a while but have been going through the the rather excruciating 5 months it’s taken to get a diagnosis.
I’m 45, female and have finally got a smouldering diagnosis after entering this journey through a routine blood test that picked up abnormal para proteins. 1 bone marrow biopsy, skeletal survey and today a whole body MRI scan later here I am!
Hello !
Hiya Geebee, welcome to the club that no one truthfully wants to join!
I was just reading through the posts and noticed you had posted.
I am not smouldering but am going through the whole process, on my last round of drug treatment prior to a second stem cell transplant.
As you probably know they are a great bunch on here, also many of the guys and girls post on the Facebook Myeloma Support Group page, worth a look.
Best of luck on your journey, stay positive.
May you smoulder for many many years.
Tony F
Hi Geebee and Welcome!
Yes, the diagnosis process is rather excruciating ( in more ways then one sometimes!!) and even after all that the questions & confusion continue for all of us I think.
I was reeling when I first found myself where you are just over a year ago but it’s amazing how life settles down. I have found the folks on here very supportive & the Nurses on the Helpline are great too & Maggie’s have an online community if it goes quiet on here.
I have come to the conclusion that at least while we are smouldering we can use every opportunity to find out more about options for treatment, coping strategies etc. Certainly I feel very different now to how I did this time last year. I find exercise & mindfulness practice helpful – plus a supportive GP – & I have also not told anyone ( apart from my husband of course) so I can get on with my life as it is now.
Good luck
Sending love & hugs,
C xx
hello Geebee, you dont want to be here, but this is a great bunch of people who will tell it how it is and you can tell them anything no one judges you just tries to put your mind at ease. Im a year and a half into all this and as Cygnet says life settles back down again until the dreaded blood tests times (mines due next week and the sleepless nights and nightmares have started again) but inbetween i’m just little old me the same person who if it hadnt been for an abnormal blood test like yourself would never have known. There have been days when I curse the doctor for doing the blood test as I dont feel ill but they are outweighed by the fact that he found something for me early on this journey which means the consultants can now jump on things alot sooner should they change and hopefully make this a smoother journey to follow but as everyone will tell you on here none of us are exactly the same even with similar numbers we can develop it differently.
Keep your chin held high on your good days and on your feeling sorry for yourself days let it be just that a day then get back to your normal routine. Why let this disease spoil our normal way of life do everything you were doing because if like me i bet you dont feel any different.
Hugs Helen x
Hello. I just wanted to say that these notes really give me hope and comfort, thank you. I am very up and down at the moment as a relatively new smoulderer. I hope you are all doing ok. Very best. Mark
Hello Mark, don’t worry about the up and down i’ve been like this for just short of 2 years now, it never goes away but i try to let the bad days just be that bad day and then enjoy the good ones, would like to say it does go away but from my point of view it is always there in the background waiting to pounce out of the old brain cells as at the minute with no symptoms its just mind games, especially at blood test time, but i try to set myself little challenges to do each day after blood test till i get results to keep me busy, this week has been easy to keep busy as the bathroom pipes leaked into kitchen !!!!! hugs Helen
I just want to introduce myself having just been confirmed as a Smoulderer…………….
I am Mike Hardy (68) living in Banbury and the Churchill Hospital in Oxford are looking after me. I was diagonosed with MGUS some 10 years ago and had 6 monthly blood tests. In Dec 2015, plasma was showing in the results although the other main parameters have remained stable.
I have Ankylosing Spondylitis, an auto-immune disease like RA so I have SI, lower spine and neck pains constantly so being able to identify new bone pains will not be easy. Also, as I self catheterise, I am experienceing regular UTIs. My immunity is under constant attack.
Does anyone have ways and means to boost their immune system?
Bye for now, as I get my head around all this lot!!
Mike
I just want to introduce myself having just been confirmed as a Smoulderer…………….
I am Mike Hardy (68) living in Banbury and the Churchill Hospital in Oxford are looking after me. I was diagonosed with MGUS some 10 years ago and had 6 monthly blood tests. In Dec 2015, plasma was showing in the results although the other main parameters have remained stable.
I have Ankylosing Spondylitis, an auto-immune disease like RA so I have SI, lower spine and neck pains constantly so being able to identify new bone pains will not be easy. Also, as I self catheterise, I am experienceing regular UTIs. My immunity is under constant attack.
Does anyone have ways and means to boost their immune system?
Bye for now, as I get my head around all this lot!!
Mike
Hi all,
I haven’t been on this forum before, although I was diagnosed with myeloma over 2 years ago. I am on watch and wait still regarding treatment, my pp being less than 10. My plasma cells though are 22. I am unwell a great deal, fatigue and bone pain particularly in the mornings, I do though ignore it as much as poss and get on with my life. I’m told I shouldn’t have these symptoms at this stage by the consultants, but the reality is I do! Does anyone else out there at my stage have these symptoms?
Heather
Hi Heather!
I’ve been smouldering for 8 years. My pp is below 30 but my biopsy showed 15%. When my pp was at its highest (15) I was ill a lot, but the pp went down and now I don’t have any symptoms. Just the normal smoulder worries about progressing.
My consultant doesn’t like me being called a smoulderer since I’ve been stable so he keeps calling me MGUS which is really confusing. Does your consultant call you Asymp MM/smouldering or MGUS?
Bella
Hi Bella,
lovely to hear from you. I think I should have started a new discussion trail rather than adding on the bottom of this one started by GeeBee but I didn’t realise that until after I posted it, of well hey ho. At least you have responded anyway.
odd your consultant is referring to you as MGUS. No I’m referred to as having myeloma. Some of my other blood test results have been up and down a bit at times, the ratio between Kappa and Lamba being higher a bit as well as calcium level, though pp has never been higher than 10. So with plasma cells being 22 I wonder if that is why I have so many symptoms.
It is though tough at times dealing with it emotionally isn’t it. I hope I ‘smoulder’ for years and that you continue to do so. I have appointment later this month, always a worry. Living with symptoms though whilst being told I shouldn’t have any can be difficult
Heather
Hi Heather.
I have always felt that my immune system and reactions were unpredictable and sometimes absent or over reactive. I gave up having winter flu jabs after I had a particularly bad reaction some years ago and it was undoubtedly down to the the vaccine. More recently, since Haematology have become more excited about my results (which I have recorded elsewhere in the forum), I have suffered an incredible reaction to an ant bite. In the end I didn’t even go to my GP though I was tempted to show her, out of curiosity but, I was concerned that I might be despatched to hospital. Knowing that I react badly to insect bites I was dressed as if entering Chernobyl but somehow it evaded my precautions.
The past week I have been enduring a terrible cold and, at my worst, I can just go through a never-ending cycle of colds. Since this is an illness that affects plasma cells which form part of our immune system it seems inevitable that it will have an affect on our ability to handle illnesses/insect bites and, though I was not that excited by my latest results, my body appears to be telling me a different story.
The thing is that Haematology appear to me to base their actions almost exclusively on blood test results unless there is an extreme symptom of one sort or another. My next appointment is a month away so I won’t burden anyone with my symptoms unless they become considerably worse, though I will mention it at the appointment.
By the by the doctor did ask me if I was HIV positive at my last appointment, which did catch me unawares but I wasn’t offended. I’m more likely to have Martian DNA than HIV, but it does suggest that were seeing or looking for some immune system defect.
My concern is receiving treatment that will make me feel ill, when I am already feeling unwell.
Hi Graham,
Thank you for responding. I think it highlights that this is such an unpredictable condition and your right because it effects our plasma cells and immune system we can experience many differing symptoms.
Best wishes Heather
Just to continue the confusing status of MGUS I’ll just mention that I was asked to call in at the hospital over my results and obviously they were significantly changed. At that time I felt no better or worse than usual. However since then I have endured a horrific cold virus over the past ten days. It’s like being in a tumble dryer with symptoms regularly coming and going and repeating – sweats, sore throat, sinus pains, congested lungs – not very pleasant. The question is whether this is a result of my test results or the cause of them. It did puzzle me that the doctor asked me if I was HIV positive, which is highly unlikely, and it suggests that there were other abnormalities in my results.
The results that were originally abnormal were too far in advance of my appointment to represent a forewarning of the impending virus.
As if Myeloma and amyloidosis aren’t enough to be concerned about, I have read that paraproteins can also be a ‘marker’ for lymphoma, which is more connected with immune deficiencies. The doctor didn’t mention anything, apart from the HIV question, and that’s understandable from just one set of results.
My GP can’t do much about a virus but if it creates infection in my lungs or sinuses then I’ll see what she can do. Hopefully it will have cleared up before my next blood test.
Hello Smoulderers
I was on here a year ago. Usually very cheerful but nowf feeling a bit down. Two years ago my paraproteinss were 25, last year 33 and this year 43. What I have is Asymptomatiic Myloma, asymptomatic because my other blood results are OK. HB 117 but not falling.
I get very tired and have back pain and some dizziness. My GP is very good and that is being investigated.
I think at diagnoses the doctors should be more honest and say that you may have symptoms.
I’m told I don’t need treatment while my main blood results are OK.
Do other people experience this.
Thanks
Marian 74
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