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Hello
My husband has had elevated paraprotein levels for about 8 years and for the last 6 years has had annual blood tests.
This year the consultant decided to arrange a bone marrow biopsy.
On the 10th of June the consultant said that he has Myeloma but wanted to arrange an urgent full body MRI scan of his bones to see if this has affected his bones. He had this on 16th June.
The letter from the 10th June states – “His aspirate was rather haemodilute with immunotyping with a population of malignant plasma cells consistent with a plasma cell neoplasm. The trephine then showed a normocellular bone marrow with plasma cells accounting for 20-30% of nucleated cells consistent with a diagnosis of myeloma.”
The doctor explained that myeloma is a malignant or cancerous condition that can cause damage to other organs.
We received a free parking ticket and contact details of the nurses and sent on our way.
Since then the MRI shows that he has asympotomatic Myeloma and that he will be seen in clinic at some point.
We have not been seen since first the appointment where he was told he has cancer.
We have not had a follow up appointment and apparently this will be towards the end of the year.
The question is. Does he still have cancer or not as from what I have read, asymptomatic Myeloma is not cancer yet?
He now also has got an exemption certificate for free prescriptions.
Today he has leg pains and I am unsure if this is related to the Myeloma or not.
I am so confused…as his wife..on how to deal with this.
thank you in advance.
Hello Bumblelion,
I’m sorry that you’ve been left in this limbo state, it is very stressful to be left in that way. If you haven’t seen it already, Myeloma UK have some downloadable information about so called Smoldering Myeloma, this intermediary stage that your husband seems to be in.
My understanding is that Smoldering Myeloma is myeloma, is cancer of the plasma cells in the bone marrow, but that it is at a comparatively low level so that your husband wouldn’t currently benefit from treatment. If there are no other symptoms, treatment is recommended when infiltration is 60% or more of the cells in the bone marrow. 30% or 60% sounds horrifically high, but some of us have over 90% at diagnosis.
Myeloma cells are non functional immune cells that have become immortal, they reproduce but do not die, so the problem is that they can crowd out healthy blood cells in the bone marrow. They can also cause damage to kidneys and affect various processes in the body, most significantly weakening bones through the development of lesions.
Therefore it’s important that your husband’s level of myeloma is monitored more regularly than he has needed previously, to ensure no physical damage is done. There are patients who live with smoldering myeloma for many years (I’ve heard of one who has ‘smoldered’ for 18 years so far) but many need treatment within a few years and a few within months.
At the moment, because myeloma treatment doesn’t cure the disease, treatment isn’t given unless myeloma is symptomatic. There are new and more effective treatments in the pipeline so this may change in the future.
The problems that your husband needs to watch out for (as you probably know) are so called CRAB features, high calcium levels, renal (kidney) problems, anaemia/fatigue & bone pain .Myeloma patients are particularly at risk of spinal lesions & fractures & rib lesions & fractures, so if your husband has pain, it should be checked out. Some patients have had better experiences in this regard than others, some of us have had to learn to be persistent.
The whole point of diagnosing patients with this early cancer (smoldering myeloma) is to be able to treat them at the precise time that they will benefit most, and I hope that’s what happens for your husband.
hello bumblelion
i was diagnosed at the age of 61 in 2015 my paraproteins have been consistant around 32. i had a bone marrow biopsy to confirm diagnosys. i do not receive any treatment because i am asymptomatic. i have 3 monthly bloods at my doctors and 3 monthly hospital appointments over the phone of which every other one is with my nurse. this works really well,i must also had i have contact with the hospital if required. i occasionally have had a pet scan to check for legions. the hospital check other things in your blood before they consider treatment, but i do think annual appointments are unacceptable ask your nurse or cosultant why.the watch and wait process is very stressful, but they won’t treat you for something you haven’t got. take care be mindful that every ache and pain isn’t myeloma. try to stay active
steve.
Thank you Mulberry and Steve for your replies. They were very helpful.
Take Care
Hi Bumblelion,
Sorry to hear you’ve been left in this confusing way. The annual tests do seem a little infrequent so as Steve says I’d definitely be asking why they are so infrequent. In terms of the leg pain, it is worth getting this checked out. One of dad’s first symptoms was pain in his ribs and we knew the myeloma was returning when he developed hip/lower back pain 7 years after his SCT which was then confirmed by tests and his consultant so worth being vigilant of the associated issues as described by Mulberry. I hope your husband remains in smouldering stage for a long while to come but in the meantime definitely get any concerns checked out for peace of mind xx
At diagnosis in January 2021, my myeloma cells from bone marrow extract were estimated at 23%. Same time, I was classified as having type IgA paraprotein at a level of 28 g/L.
With no other myeloma ‘features’ other than the feeling of fatigue with low haemoglobin (Hb = 12), and all my blood parameters being normal or just under borderline values, no treatment was contemplated.
Jumping ahead to living in Thailand one year later (April 2022), my bone marrow myeloma cells had increased from 23% to 29%, and again with no other myeloma ‘features’ other than the feeling of fatigue my haemoglobin had dropped from Hb = 12, to Hb 10.7 (should be 13 or above).
Your husband’s condition has similarities with mine – with his 20% to 30% myeloma cells and no real physical symptoms. Not sure why they gave you such abroad range of 20% to 30%, though I read that these values vary depending on which ‘blob’ they count. You do not mention the fatigue or breathlessness that I have noted – not severe fatigue but to a small noticeable extent. You mention leg pain. I also have leg pain, mostly knee pain but I have put this done to my age as possibly arthritis, and not myeloma. I have no problem walking, comes (sometimes only) when sitting or lying down – not sure why this is.
One other point, I have had two bone marrow procedures, in different countries. They threw up so much additional information (parameters) – not sure why you are not privileged to that – I guess that is NHS practise.
My Thai doctor’s report classified me as having Smouldering Myeloma, and then Class 1 according to ISS staging. He recommended early VRD treatment that is the Velcade, Lenalidomide and Dexamethasone. This seems to be the most common first line treatment and consist of several cycles of 28 days. Velcade infusion once every 28 days, Lenalidomide tablets for 21 days, and Dexamethasone (steroid) for one day only.
I have just undergone 3 cycles with some side effects – mild fatigue and some constipation – but I try to ignore it. My main issue has been cost of the Lenalidomide tablets that I now buy from India at a much cheaper price.
My doctor plans on doing more detailed blood tests after 4 cycles, so I am unable to clearly state the degree of success. However, my Hb has increased from 10.7 to 11.1, and my Globulin has dropped from 4.5 to 2.7 (now low within normal range, and related to how much myeloma paraprotein is in the blood). All other standard blood test results are normal or near normal.
My doctor is very pleased with these interim results and is contemplating further cycles and a maintenance regime. There is a language barrier and I’m not sure what he plans next, or if I even agree to it.
There is a school of thought that recommends early treatment – such as mine. I have seen one doctor in Singapore, and three doctors (different hospitals) in Thailand – all pushed for early treatment. Of course, they have a financial incentive wanting to put you on expensive drug treatments with associated expensive testing regimes.
There is quite a bit of literature on the internet advocating early treatment, maybe not so much in the UK.
I think the intent of all treatment is to become ‘disease free for longer’, to what extent it extends life depends on your age, health, genetics and comorbidities. However, myeloma is a complex disease and I’m not qualified to make broad concluding statements. There are some quite optimistic outcomes on this Forum – that is good news, however that could well be down to good genetics and good health? My own experience has led me to think that genetics are an important consideration and I would be pushing your doctor for an assessment on that point. Your husband has the possibility of low risk, standard or high risk genetics. I am high risk with 1q gain genetics. Very re-assuring if low risk, but bit worrying if high risk.
BTW, I am 76 years old and my doctor said a few days ago that he would follow with SCT (Stem Cell Transplant) but cannot do as an age limit of 65 years exists in Thailand. So, I will have to give thought to what are my next steps are on completion of my several VRD cycles.
I recommend Googling VRD and SCT as these options may pop up, sooner or later, as your husband makes his journey with myeloma.
; my case seems to be moving ‘faster’- probably my high risk genetics.
Could be that your husband’s doctor considers his case relatively stable and has not deemed further information necessary. This is maybe where your husband’s case and mine differ?
In the USA, the SCT solution seems to declining with so many new ‘powerful’ (but expensive) drugs in the market. I will probably monitor my condition every few months via testing of blood, and ultimately switch to an alternative drug regime, hopefully one that exists generically in India in tablet form at an affordable cost.
I have jumped about quite a bit in the above post such that one clarification is necessary.
This intervention with early treatment of my Smouldering Myeloma has been prompted by my situation being considered “high risk”, based on my “high risk genetics”.
My mild anaemia (low HB at 10.7, but still above the lower limit of 10.0 for active myeloma) was also getting progressively lower with time.
I have noticed the loss of energy – mild fatigue and mildly short of breathe.
These two points combination above, indicated that I could be expected to advance to Active Myeloma – within a very few years, or even less.
To summarise, my understanding is that early treatment intervention for those with smouldering myeloma is for those considered as high risk cases only.
I note you asked the following question:
“Does he still have cancer or not as from what I have read, asymptomatic Myeloma is not cancer yet?”
I thought about how to answer this – I googled it – the best answer is actually on the Myeloma UK website:
Smouldering myeloma – Myeloma UK
This reminds me of something similar, not having lived in the UK for many, many years, I find the best first summary of various medical conditions are to be found on the medical advisory leaflets as put out by the NHS.
As for your husband, I assume no lesions were found from the MRI (BTW as in my case).
I would still push your doctor or his staff, to confirm that a FISH test was performed after bone marrow biopsy and only low risk genetics were found.
I believe that would be good news and give a good prognosis for your husband – IMHO…
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