Hi Jogj, I am sorry that you are facing the terror of loosing your mother.
As a myeloma patient, I hope that my final days and weeks are like your mother’s, with pain under control and still being very much myself. It must feel unbelievable that someone can go from outwardly looking reasonably well to being untreatably ill in the blink of an eye. How does your mother feel about it? Some people with MM are at peace with their impending death and are able to create new memories with their families and say whatever they want to say in a way that people whose death is sudden are not able to. This is what I’d like for myself. Please seek help from your mother’s myeloma nurse and/ or Myeloma UK as Lili suggested.
I’m sorry that your husband’s SCT hasn’t had the result you had hoped. However as with so many aspects of myeloma, statistically poorer indicators do not necessarily reflect poorer outcomes. A member of our local support group had a first SCT 10 years ago and was left with evident paraproteins, which remained at a constant level between 5 & 6 until this summer when they started to rise and myeloma became active again. This MM patient didn’t have access to lenalidomide maintenance either, which statistically would have nearly doubled the period of inactive disease.
I believe some MM patients go into an MGUS like state, and like my friend appears to have had, and despite evident pps had no problems until the myeloma became active again. Also it can take a year or so for the full effects of SCT to become apparent. Another member of the group had pps which continued to fall over the first year after SCT so there must be the possibility of your husband’s pps continuing to fall. I’m sure that the next few blood tests will be an anxious time for you both, but I hope they show a downward movement, or at least no movement at all.
Even those of us fortunate enough to have no evident pps after SCT are very likely to have some level of minimal residual disease, but outside trials this is not measured in the UK. Lenalidomide maintenance really does help keep that residual disease at bay, and I’m so pleased that people like your husband can have it after SCT.
I hope it goes well Dave and that your hurdles are easily overcome. Keep in mind that many MM patients agree to have a second SCT despite experiencing the first, and that although we are warned of many unpleasant side effects, most of us only have one or two of them, and one member of our support group had none! I hope you have an ” easy” time.
I’m on lenalidomide as maintenance after first SCT. Having read the UK myeloma XI trial results I was very keen to have maintenance, but could only tolerate a 5mg dose, (due to low WBC counts) which may have had the consequence of lessening the potential for side effects such as fatigue?
It must be very disappointing to have not responded to a stem cell transplant. DVD is the comparatively new standard second line treatment for myeloma. It is a massive improvement on the old options and many UK myeloma patients are currently benefiting from it. Some patients with myelomas that have had little response to earlier treatments now have inactive or stable disease. Daratumumab, the first D in DVD, targets the cancer cells in a different way, and although patients can have side effects after the first dose, its reputation as an ongoing treatment looks good. It has certainly helped some people who were very despondant, either because they had not responded to earlier myeloma treatment or who had had extreme side effects. I hope it works well for you, please let us know how you get on.
Lilib I hope that your husband had little or no negative reaction to Zometa. The immediate effect of zometa is yet another curious myeloma phenomenon (there are plenty) where one typical myeloma patient experiences no side effects whereas another typical myeloma patient feels quite poorly afterwards. The zometa infusions usually go on monthly for 2 years. I agree with Rosary’s advice.
I felt very faint and lightheaded during induction treatment and was tired much of the time. I had a widespread rash for a while and had a bit of neuropathy in my feet.
Once induction treatment and stem cell transplant were over, I quickly felt much better. I felt pretty much back to my old self 60 days after SCT.
I’m now 2 1/2 years after SCT, & feel fine. Today I worked for hours harvesting hay by hand, not quite with the stamina I had 10 years ago, but I was able to do it. I’d say that I still can do anything, but not everything at the same time. I still have anaemia and I still have some fatigue. But it doesn’t get in the way of a good quality of life.
Welcome Vincent
Welcome Samella. There is a real fellowship between myeloma patients which honestly makes it a less lonely experience. None of us wanted or expected myeloma in our lives, but it is possible to come to terms with it, to forget about it at times and for life with myeloma to be good and to be enjoyable.
Welcome jiffie to this exclusive club no one wants to belong to.
It’s always totally and profoundly shocking to get diagnosed with a blood cancer few of us have ever heard of, and the “incurable” term is totally preoccupying for a while. But the reality is that myeloma is more of a chronic disease for increasing numbers of us, as new treatments are being approved regularly. Your 4 drug induction treatment is a good example- a very new combination, one that bodes very well to give you a longer period of ‘remission’ or inactive disease than we existing patients are experiencing. I have been to a local myeloma support group today- we have one very active member who has had myeloma for 18 years so far, another for 11 years, another for 9 years. Statistically more of us diagnosed in more recent years will have these long lives ahead of us. Even if you have some side effects during your treatment, once treatment is over, you are likely to feel much, much better than you have for some time. To use an Olympic analogy, myeloma is not a sprint, nor even 1500 metres, but more like a steeplechase, with periodic difficulties to overcome, but in between times life can be good, or even very good.
My light chains were measured in mg/l. The normal ranges are quoted as follows:
Lambda 5.71-26.3, kappa 3.3 – 19.4, kappa/lambda ratio 0.26-1.64
There is a useful myeloma Uk leaflet ‘tests and investigations in myeloma’.
Hi Gizmo
Not being a doctor, and going on my blood test results around diagnosis, it seems to me that all the results you mentioned are relevant. I have a diagnosis of IgG lambda too.
If it helps I can give you my ‘ out of normal range ‘ results before/around diagnosis.
The clinical features are an important dimension to diagnosis, high calcium levels, renal damage, anaemia and/or bone damage, (so called CRAB features) but also the percentage of myeloma cells in bone marrow which can only be found by a bone marrow biopsy, the level of paraproteins and light chains (for 99% of us). However haematologists are the ones to know which combination of results are the most significant, and tip the balance between MGUS, MGRS (monoclonal gammopathy of renal significance), Smoldering MM & Myeloma itself.
As you will see from my results I had anaemia and renal issues, but the critical thing for the haematologist wasn’t these, nor my level of paraproteins or light chains, but that I had 60% myeloma cells in the bone marrow biopsy. Even then I didn’t actually start induction therapy for 3 months (partly my responsibility as I transferred to a bigger hospital & to a myeloma specialist).
My out of range results were:
Serum total protein 91g/l later 98g/l (normal range 60-80 )
Albumin at lowest level 35g/l (went lower before treatment started)
Erythrocyte sedimentation rate 80mm/h (normal range 0-30)
Haemoglobin concentration 102g/l (115-165 normal range)
Red blood count at lowest normal level 3.8 10*12/l
Haematocrit 0.314 (0.37-0.47)
Mean cell Haemoglobin level 26.8 Pg (27-34)
Red blood cell distribution width 15.3% (10-15)
Creatinine 97 umol/l (range 45-84)
eGRF 55ml/min (chronic kidney disease stage 3a)
IGA 0.22 g/l (0.8-4.0)
IGM 0.35 g/l (0.5-2.0)
IGG 39 g/l (6.0-16)
Lambda light chains 254mg/l (normal range 5.71-26.3)
Kappa/lambda ratio 0.04 (0.26-1.64)
Paraprotein 42g/l (normal 0)
Beta 2 microglobulin 2.86 mg/l very quickly rose to 3.48 (1.0-2.40)
I hope this isn’t just totally confusing.
Hi Panda, it’s normal to think the worst and to go through all the ‘what ifs’. There are many common presentations for myeloma, and many unusual ones- one of many reasons why “multiple” myeloma is an appropriate name. It’s good that your odd symptoms are being investigated. Mine weren’t, and added to the stress of the myeloma diagnosis. I had an odd feeling in my throat, which was ignored and then viewed as psychosomatic (even though I’d mentioned it right at the start), which turned out to be Hashimotos thryoidosis, an autoimmune problem, and thyroid nodules which needed surgery. I had to make such a fuss to get investigated and followed up, then all of a sudden the hospital wanted to do surgery ASAP, just as I was having a stem cell transplant.
I suspect the 2 diagnoses were linked in that the inflammatory processes going on in my body may have driven both.
Now, 27 months after surgery, I tell my consultant that I feel like a fraudulent myeloma patient. I guess I am slightly fatigued, but that really is my only symptom. My blood tests still show some damage to my bone marrow, but that doesn’t impact on my absolutely fine quality of life. I really hadn’t imagined this would be possible at diagnosis, I had imagined things as more of a slippery slope & permanent ill health.
I hope that you are able to find some distractions over this Bank Holiday. One day you will realise that you hadn’t thought about myeloma for a while, and doing activities helps with this.
Myeloma outside the bone is called plasmacytoma. It’s good that your team are checking everything.
It’s rare to have myeloma and lymphoma but there is someone who comes into this forum who has this dual diagnosis.
If you haven’t found it already, I recommend Myeloma Crowd’s healthtree university for very comprehensive myeloma information, and the healthtree itself as a database where you can potentially liase with other people with myeloma who share your presentations, and see which treatments worked for them.
Glad that you got to spend some time with your GD.
Hi Gizmo
Please do not hesitate to push for further testing. Myeloma is notoriously difficult for GPs to diagnose, or to get the right balance. Mine went the other way from yours and told me that I could be dead in 3 months! (3 1/2 years later I am feeling absolutely fine)
If you have not had an electrophoresis test, you could ask the GP to sanction this. This blood test looks for a monoclonal plasma cell spike (rather than normal polyclonal plasma cells).
Depending on where you are you could seek a consultation at a private clinic from a haemo oncologist who also works for NHS (so if diagnosed then ask to be seen by same Dr on NHS) but as you have bone pain probably the cheapest & quickest solution is as Paula suggested, to get a private MRI scan done (wherever you can get it done). You will need an MRI or PET scan anyway as part of the diagnostic tests.
This period, after Myeloma (the disease most of us have never heard of), has been raised as a possibility, and before treatment starts,(if it is necessary) is always shocking and frightening. However many of us (& almost all ‘younger’ ones like yourself) respond really well to treatment and later feel much, much better.
With any chronic disease, we have to become good self advocates and be prepared to be persistent when it comes to getting answers, and often treatment is a dialogue between Dr and patient as there are quality of life and practical issues that ultimately determine which treatment to pursue. It is stressful when you are having to push and argue for tests from the very start,& far too common for Myeloma patients, but ultimately not necessarily a bad thing psychologically.
