Hi ds, don’t apologize for worrying, the forum is here for anyone who is worried about any aspect of myeloma, and all those who have the disease know the stress and uncertainty of the testing process that you are going through. I suspect it’s one of the worst times in all our lives.
Knee pain certainly isn’t a common symptom at diagnosis, I guess that you are aware that the defining features are high calcium levels, kidney damage, anaemia and/or bone (usually in the torso) lesions or fractures.
Myeloma is also more common in men & people in their 60s, 70s & 80s. Whilst none of this absolutely precludes you having myeloma as a young woman, it does make the chances thankfully slim. If blood tests you’ve had relatively recently haven’t shown anything untoward that should be a bit of reassurance. Most, if not all, myeloma patients have had a precursor, benign condition called MGUS, monoclonal gammopathy of unknown significance, which could have flagged some anomalies in blood, had it been tested.
However scary, it is always better to be tested for myeloma, and hopefully get a negative result, than to be one of the people who doesn’t get tested, who turns out to have had the disease for a long time, which unfortunately does happen. I am now very grateful that my myeloma was picked up incidentally in a general range of tests, as it enabled me to start treatment so much quicker than many patients and to now be in a good place.
Of course you will be worried until you get results back, and clearly you need to know what is causing your knee pain. I hope that you get all the test results back soon.
Hi Paul, your life sounds extremely stressful and I’m sorry for your loss of your mother.
It is a known issue that myeloma can be missed in elderly people with other serious health conditions. So your experience of your mother dying shortly after diagnosis sadly is not uncommon. Myeloma UK have been trying to educate GPs about myeloma so that this possibility is considered earlier when myeloma treatment would control the disease.
There is some evidence that myeloma treatments (such as CAR-t cell treatment) can cause neurocognitive problems as occur in Parkinson’s disease and Lewy Body disease but I haven’t seen anything that suggests myeloma is directly related. (Although they both may be related to chromosomal changes caused by toxins in some cases?) I had looked for research as my mother had Lewy Body dementia with Parkinson’s features and I have myeloma. If you find anything, I’d be interested to read it. With best wishes to you and your father.
Hi Jeanrose, I’m sorry that you have found yourself in this exclusive club, but welcome to it anyway. The numbness your husband has sounds like peripheral neuropathy, which is a pretty common side effect both of myeloma and of some of the treatments we have. There are a wide variety of common symptoms at diagnosis, including neuropathy. These symptoms do usually get much better once treatment is underway and the level of myeloma is reducing. If your husband already has some peripheral neuropathy his doctors will be careful monitoring this and balancing drug dosages to be effective at reducing the myeloma without risking more neuropathy (if that is what causes your husband’s current problem). Best wishes, Jane.
Dear Caroline, it’s good to hear that your husband is responding to DTPace, hopefully he’ll be able to have the SCT soon. I hope that you both have many better Christmases and New Years in the future. With very best wishes, Jane.
Hi Caroline123, I hope the hospital came up with a treatment plan and that your husband is doing well. Best wishes, Jane.
Thank you docmike. It was a relief to get an email confirming that we/I am eligible for treatment should we get infected, but you’ve given more information about what that treatment will potentially be.
Hi Peter
How are you getting on and how are you sleeping? I often couldn’t sleep, or frequently woke during the night, while I was on induction treatment, but since then I’ve generally slept very well.
Jane
I’m sorry that your father’s paraprotein level has immediately risen once treatment has stopped. Someone else has posted about this very recently (Caroline) in another thread, and a member of my local support group has also experienced this in the last few weeks. His consultant has started him on another drug regime to get the paraproteins right down before heading back into SCT. It’s a worrying thing to happen, but seemingly not that uncommon unfortunately.
Welcome to the forum.
When I was diagnosed my test results suggested that I may be coeliac too, along with a few other things. I didn’t get the definitive test but a few months later, on reading that more myeloma patients are coeliac than chance would suggest, started a gluten free diet which I’ve now been on for more than 3 years, and I do definitely feel better for it, even though I miss proper bread!
I hope your results from your first cycle are good, and best of luck for your next cycle.
Hi Melaniet
Just to say that we were all scared witless around the time of diagnosis, we can all totally relate to the way you are feeling.
I hope that you are not diagnosed with myeloma, but just to say, if you are, things do get better, far, far better than they are around the time of diagnosis. Although I heard the term “treatable but incurable” I only really heard, or took on board, “incurable”. It took several years for the “treatable” bit to come to the forefront, and for me to really define myeloma in this way.
With best wishes Jane
Hi Caroline,
Your husband’s experience is exactly the same as one of the newer members of our local support group, who has started a new treatment rather than the stem cell transplant he was anticipating starting a few weeks ago.
You have probably heard myeloma being described as “an individual journey” I think this is an example of that. We all seem to have blips of one sort or another.
I don’t know whether it necessarily means that the myeloma is more aggressive per se (I think only his doctor could answer that), but my understanding is that the stem cell transplant is likely to be more effective if the myeloma level is as low as possible (& possibly stable). Another drug used as a second induction treatment might well get your husband’s paraprotein levels right down which produces a better result in the longer term.
I think it’s evitable that you will see this setback as very worrying, myeloma is a very stressful disease, it has this tendency to hit us with some new problem from off side, just when we think we have some control, and a plan in place. It is devastating and worrying in the extreme when plans have to change. It’s only in hindsight that we realise that we can, and have, dealt with the blip. The positive thing for your husband is that he has responded to treatment, that his paraprotein level has much reduced from the level at diagnosis where it was causing damage, and that your husband is a lot better physically than he was 10 months ago.
I hope that your husband’s team put together a new and effective plan for his treatment, and in the meantime you are both ok.
Hi Slimynose
This diagnosis is always the most profound shock, & I think the natural fear, having been diagnosed with an incurable disease, is that we are on a slippery, downhill slope. However that really isn’t the experience of many, thank goodness. I too have been fortunate enough not to have pain or much in the way of symptoms, and I’ve now had almost 3 years since SCT of almost normal life, so much better than I’d realised would be possible. Keep hope alive, & best wishes to you.
Aron, take heart from the leader of my local support group who was wheelchair bound for the first 6 months after diagnosis. But since then, for the past 17 years!, she has been very active. She belongs to a walking group, digs her own allotment, goes on active holidays multiple times a year…. These things are clearly possible. I haven’t had spinal lesions so far so can’t talk from personal experience, but other members of our local support group definitely find mobility gets easier, even if they loose a few inches.
Hi Sachbarnes, I think this decision is dependent on a lot of factors, and is usually made at an MDT so by the Dr and his colleagues collectively.
My understanding is that there is a balance between the level of paraproteins and the damage that the drugs (especially lenalidomide) does to stem cells, which need to be collected in high numbers to enable recovery after SCT.
I know someone who was booked in for SCT with paraproteins stuck at 20, and another whose paraproteins have never been below 7, before or after SCT, who had a SCT 10 years ago. (ie nearly 10 years of stable disease in an MGUS like state, without maintenance which is now available)
I would question the Dr so your father & your family understand why the recommendation is to go ahead now rather than giving an extra cycle, but it probably will make absolute sense.
Hi Johnny1961, I’m sorry that you haven’t had any replies, I think that’s because none of us are doctors and as patients we haven’t got the expertise to answer your question.
The definitive way of detecting myeloma is by bone marrow biopsy, looking for cancer cells in the bone marrow. Whatever presentation of myeloma we have had, this is the only conclusive test, so you may want to ask the doctor for this, even though it is often painful. Diagnosis isn’t easy for drs as there are many different potential presenting problems,most of which could be indicative of minor health issues (eg back pain, fatigue). The key usual myeloma presentations are high calcium levels in the blood, renal problems, anaemia and/or bone lesions, which 80% of us have at diagnosis.
I hope that it turns out that you do not have myeloma to add to your health issues, but if you do, the myeloma community and Myeloma UK will be here for you.
