Hi Sachbarnes
My results seem to be doing a similar thing, but not so marked drop in haemoglobin though. I too still have no paraproteins evident but over the past 6 months or so, various parameters have been curving downwards and are now outside normal limits inc light chains, WBC, RBC and my kidney function has reduced. After I had the latest set of routine blood tests a month ago, the Dr (unfortunately not my consultant) ordered another set of “more detailed” tests to see if that would indicate what is going on. These turned out to be mostly thyroid, diabetes, iron studies etc. Those results came up on the patient portal a fortnight ago and all but ferritin are perfectly fine. I haven’t had a consultation since and I haven’t got answers, but perhaps it’s not that rare? I hope your dad gets answers soon.
Best wishes, Jane
I had COVID about 2 months ago, and although I wasn’t really unwell, I had a greater level of fatigue than usual afterwards, which I had thought might be significant, but that has improved again now.
Hi Windyloo
All the tests are quite alarming, but in the long term it is good to have had them. Hopefully these tests will confirm that you don’t need treatment at the moment, but will give baseline results should you be unfortunate enough to need treatment at some stage. It is far better to have what seems to be too many tests, than to be one of the patients where delays were caused by things not being picked up. But at the time, it is anxiety inducing, and it’s only in hindsight I can say this!
Jane
Hi Sandra
I’m sorry that you are having a tough time dealing with induction treatment. I know that many patients do feel weak, dizzy, shaky on induction treatment & although I didn’t have pain I didn’t feel myself for a year, until after I recovered from induction and stem cell transplant. But I did feel well again eventually & you are very likely to do so too.
I haven’t heard of jaw or tongue involvement. I would leave a message for your myeloma nurse to report it. I know the answerphones may say a 48 hour response (my hospital does too) but I sometimes had a response later in the day.
I hope you get help or reassurance from your team. Myeloma is a tough challenge.
Best wishes, Jane.
I didn’t have daratumumab during my induction (it wasn’t available then) but I haven’t heard of side effects coming off it. Generally myeloma patients feel increasingly physically well when they are in this period between induction treatment and stem cell transplant. Their myeloma has been knocked back to a low level, or is no longer evident, and they no longer have unwanted side effects from steroids, Thalidomide, Velcade or Daratumumab.
We all have anxiety about the impending stem cell transplant, but I remember this period as feeling particularly physically well. (I was lucky enough not to have bone lesions)
It gave me understanding of what “treatable” in myeloma means, I had a real improvement in quality of life, and although it took a while to return after SCT, it did, and for me it remains that way 4 years later.
I hope it’s a straightforward process for you Nuala, and most importantly, gives you a good, long period of disease stability.
Best wishes
Hi GC
This is quite a common occurrence. We patients are initially given a drug to stimulate stem cell production that is moderate cost and moderate effectiveness. It does work for a proportion of us. There is a much more effective drug, which costs a lot more. This will be the drug that you’ve now been given. There is an excellent chance that it’ll will work this time. I hope you produce lots of lovely stem cells.
Jane
Dear Nightowl,
What a lot going on. I really sympathise with you. When I was diagnosed with myeloma my father had dementia & complex health problems and had gone off his feet, and my mother, his carer, had cognitive problems & Parkinson’s symptoms, a different type of dementia. I had a very stressful juggling life similar to yours.
As the myeloma patient I didn’t have the other medical challenges that your mother has, but I know that myeloma treatment has REALLY helped me. The diagnosing haematologist told me she expected me to live for 3-4 years, but 5 years later I’m still in “remission” and living a life well worth living. (It’s now easier for me to have real hope to live another 5 years plus. )
It’s common for patients at diagnosis to fear that “incurable” means “terminal”, I certainly did (not helped by inaccurate info from GP).
Your mother should have a named Specialist Myeloma Nurse. I think that it would be helpful if you contact her/him to discuss all the issues that you have raised above. If you aren’t aware of who the Myeloma Nurse is, ask the Haematology team .
For yourself there are some resources that can help you to offload some of your anxiety to navigate this minefield that you find yourself in. Myeloma UK have a Peer Support scheme, if you have a Maggie’s Centre locally they can provide professional counselling, and I think Macmillan are also doing this.
In the meantime do try to look after yourself.
I found it helpful to take sleeping tablets rather than waking at night worrying about the family predicaments when a great deal was totally beyond my control, as your situation is beyond yours.
Hello Lou
You’ve come to the right place.
It is not “normal” to find any level of paraprotein in blood tests, BUT 4g per litre is a low level, a very low level compared to the levels people normally have when diagnosed with myeloma.
There is a pre cancerous condition called Monoclonal Gammopathy of Unknown Significance (MGUS) which is fairly common in the community, but most people with it don’t know they have it, as it doesn’t have symptoms- or necessarily cause problems. Some people just live with it forever. But in some cases it eventually develops into myeloma or chronic lymphocytic leukaemia (and all myeloma patients will have gone through this phase, but most were unaware). So people with low levels of paraprotein are monitored with blood tests to check that the level doesn’t get over 30g/l , or that they don’t develop any damage caused by the monoclonal cells, either high calcium levels (which can cause strokes), kidney damage, anaemia or bone lesions.
Some of us have physical damage at levels under 30g/l, but not at levels as low as 4g/l.
My myeloma came to light when I was diagnosed with thryoid issues too, but in my case had paraproteins of 32g/l.
Jane
Hi Paul
I’m sorry to read your family’s particularly difficult experience of myeloma. It must be so worrying for you both, not least because your child is so young.
Has your wife been told that she has any known reason to have difficult to treat myeloma, such as high risk genetic changes?
Even without known high risk changes there are myeloma patients who don’t respond well or “averagely” to every treatment, but who nevertheless respond better to some treatments. I’m sure we all hope that your wife will respond for longer to lenalidomide and Dex. Just a thought: Is your wife being seen at one of the bigger regional or London hospitals? If not, it may be worth her asking for a second opinion at a major hospital which is dealing with myeloma on a routine basis. It’s amazing what treatment options some doctors can pull out of the bag.
Hopefully later on in her myeloma treatment your wife will respond to one of the new treatments such as bispecific antibodies or CAR-T cell therapy when they become available.
Have you discussed whether your wife might be eligible for a drug trial, which might enable her to access one of the new treatments before they are generally available. I would hope that her disability would not exclude her since so many real life myeloma patients have co existing medical complications of one sort or another.
Best wishes, Jane
Hello Sandra, welcome to this club no-one wishes to join.
Many working age patients manage to continue to work during induction therapy, at least part time. Induction isn’t as debilitating as true chemotherapy as it targets very specific things rather than causing a lot of collateral damage.
Actually it’s the steroid, Dexamethasone, that causes the most problems for many patients as it can cause sleeplessness and mood swings. However it can give real highs & energy bursts, which help some of us.
I felt “odd”, a bit spaced out and dizzy, rather than unwell during induction (although when I was diagnosed 5 years ago we only had 3 drugs for induction).
You shouldn’t lose your hair at this stage, that’s caused by melphalan and cyclophosphamide which are chemotherapy drugs given around the time of stem cell transplant.
Report any odd symptoms to your myeloma nurse or at clinic appointments. Many of us are left with a degree of peripheral neuropathy in the feet, or feet and hands. To minimise the chance of this, report any tingling or odd lack of feeling in your feet as soon as possible. I did this, my Velcade was reduced (twice, eventually to half dose) and I haven’t been left with neuropathy.
Often myeloma levels start falling very quickly after treatment starts, and I hope this is true for you.
Many of us have some sort of hiccup along the way, but we get there in the end.
Once the myeloma is in remission or stable all the effort to get there is worthwhile.
Hi Squirrel,
Don’t lose hope that a good level of health and fitness will return, your old gardening habits will have stood you in good stead.
I too was a gardener. I am now a gardener. But I had to take about 2 years out of serious gardening. Although I didn’t have pain, I had dizziness which stopped me from bending down, and fatigue which put paid to any exertion initially. I had a stem cell transplant and afterwards was told to avoid contact with soil, and scratches for a year- very frustrating at the time since I felt pretty well.
However in the years that have followed (I’m now 4 years post transplant) I’ve got back to gardening, and I’ve read it’s very good for the immune system as well as joi de Vivre.
Initially I had feared that myeloma is a downward spiral into ill health, but that is far from the truth. Most of us have rough patches but between them periods when we have good quality of life, and that includes being able to enjoy gardening.
My husband and I made our garden a bit easier to manage by creating more of a wildlife & wildflower area, and my garden certainly isn’t pristine, but I am back to loving it.
In answer to your question about my friend diagnosed 19 years ago, the myeloma treatment protocols have changed so much since she was diagnosed, you would be best to ask your doctor’s opinion about whether you would benefit from radiotherapy.
I hope that you can enjoy being out in your garden during this spring and summer, even if it’s seated with a coffee, rather than with the fork or secateurs.
Hi Squirrel and Pest84
Over 80% of myeloma patients have bone lesions at diagnosis. Bone pain is probably the most frequent diagnosing symptom.
For most patients the bone pain starts to subside to a very significant degree once treatment has started and the cancerous myeloma cells reduce. Although the bone lesions don’t repair with normal bony growth, they do repair with scar tissue and most patients can resume a pretty close to normal life.
One of my friends was in a wheelchair for 6 months after she was diagnosed with MM, but went on to lead a walking group, dig an allotment and do all her own gardening. She’s not currently quite so fit- but is still enjoying life 19 YEARS later!!
There is a myeloma specialist in USA Dr Urvi Shah who had Hodgkin’s lymphoma during her training. As a blood cancer patient she was convinced that diet makes a difference to outcome, changed her own diet and for a few years has been doing research into diet and myeloma.
It is worth listening to her podcasts.
Basically she advises that myeloma patients eat at least 30 different plant foods a week (vegetables, fruits, herbs, pulses) that we aim not to eat processed foods, including plant based processed foods, cut meat and dairy (she says 80% of people are lactose intolerant) if not out, then down & cut out refined sugar.
Meat, dairy and sugar for special occasions only.
She also advises against the general use of supplements as they will unbalance vitamin & mineral levels (except vitamin D which most myeloma patients are low in, and B12 which many patients have low levels of).
Her approach seems similar to Dr Tim Spector’s Zoe project in UK which is researching the gut microbiome. He also advises 30 different plant based foods a week, although his work is aimed at us all, rather than myeloma patients specifically.
Hi Znab,
The curcumin used by Dienneke Ferguson, whose response was written up in the British Medical Journal (A. Zaidi 2017) was Drs Best c3 complex with bioperine (black pepper, which aids absorption). The company make 500mg and 1000mg doses. Dienneke used 8g daily, so used the 1000mg dose.
Dienneke died in about 2020, but not from myeloma despite her being told that she had run out of treatment options about 10 years earlier.
She also used hyperbaric oxygen treatment which may have had an effect on her myeloma too.
Dienneke followed a long term (18 year) Smoldering Myeloma patient who has a health blog called Margaret’s Corner that may be worth reading, either Facebook, or just search “Margaret’s Corner”.
I attended a zoom myeloma patient support group last week which had Dr Urvi Shah speaking. She is a US myeloma specialist doing research into diet. Although she advised against the use of most supplements, she said there is some evidence curcumin can help (& vitamin D & vitamin B12).
I’ve been using Dr Best curcumin, with my consultant’s knowledge, for 5 years alongside conventional induction then maintenance treatments. I started using curcumin before starting induction treatment. Looking back at my results I see that my pps had been rapidly increasing over a period of 4 months while I was being diagnosed. I had an initial dramatic drop of 30% after starting curcumin, then the pps stabilised. However I felt too concerned about potential bone damage to risk continuing to watch & wait.
Curcumin seems to be something some myeloma patients benefit from, but probably not all.
The Drs Best is very expensive in UK, but if you know anyone visiting from USA it can be bought there for half the price and can be legally brought into this country.
Hi Lillipops
Congratulations on getting over the first hurdles and having the melphalan.
Try not to worry about next week. A few of us sail through without ‘side effects’or with minimal ones.
I had convinced myself that I would be very nauseous, but managed to continue to eat throughout the process with little nausea. I felt very tired, and slept alot days 7-9 and it is the fatigue (& sciatica) that really stick in my mind, rather than all the side effects that I feared.
Day 12 felt quite magical, I woke up vaguely aware that I felt better, and increasingly felt better hour by hour. By lunchtime I was aware that I was over the worst, even though I had picked up a virus.
Roll on day 12 for you, and hoping that the days in between are easier than you fear.
Jane
