Hello Emma
Thank you for sharing your family’s terrible experience with your dear mum’s myeloma, your loss and the failings of her hospital treatment.
They strike a chord with me as there were a catalogue of errors in my late mother’s care, a world away from the care that I have received as a myeloma patient at my current hospital.
I am still processing my mother’s death 18 months later, but would suggest that you try to remember your mother as she would want to be remembered, not for her final few weeks. It may be helpful to contact PALs at the hospital to record your concerns over your mother’s treatment if you feel this will help you, and to seek counselling as Rich has suggested. The suddeness of your mother’s death is bound to make you worry about your own health and the health of others you love, it will take time to be able to take health for granted again.
With condolences for your loss & thanks for your posting, Jane.
Hi deec
Have you been told what visiting arrangements/restrictions there will be?
When I had my SCT 3 years ago I was told to have complete changes of day and night clothes every day, I would not have managed that without visitors!
It is almost inevitable that you will have diarrhoea, and be attached to a drip stand which will make getting to the toilet a challenge, so plenty of spare underwear and incontinence pads are useful. Also soft toilet paper!
I found squash & snacks helpful to keep nausea at bay, and visitors bringing in the unusual things you find yourself fancying to eat.
I took films, puzzle books and some craft type activities in, but didn’t take most things out of the case. I took books and an iPad and listened to audio books though. I tried to keep physically active, walking outside my room a few times a day,but found the two hourly monitoring of temperature and blood pressure etc 24 hours a day, made me doze quite a bit during the day, so although I only felt ill for 3 days (& that was mostly extreme fatigue) I also didn’t do that much. (But I was allowed daily visitors who distracted me)
I had had cyclophosphamide before my SCT so had already lost my hair. I think the nurses are very used to shaving heads if you want to leave your hair as it is before you go in, I’d take some hats with you, baldness feels quite cold.
Phone & charger are lifelines and the iPad was invaluable- but make sure there is WiFi (although surely this must be available?)
Good luck with the SCT- remember that you’ve been warned about everything that can go wrong, but not everything will go wrong. Most of us experience some undesired side effects, one person I know had no problems at all, and very few people have serious side effects.
Best wishes- oh, and don’t forget to arrange to have ice or ice lollies before, during and for about half an hour after your melphalan infusion. It can prevent the stem cells in your mouth & throat being killed off by the melphalan, which avoids some of the nastiest side effects of SCT. You may never be able to face that type of ice lolly again – so don’t choose your favourite!
I agree with Bear, you will have many options after eventual relapse.
Specialists cannot even agree how many subtypes of myeloma there are- or even if it really is just one disease. Prognosis is therefore hit and miss on an individual basis, with some patients either doing a lot better or worse than their chromosomal features and staging at diagnosis would suggest. You have had a better response than most and I’ve heard it said that the longer you live with myeloma, the longer still you are likely to survive. That’s certainly true in the early days after diagnosis as some people are so poorly by the time that they are diagnosed that they scarcely start treatment, but also true of some of the very long lived patients.
Some patients seem to have myeloma mutations which are particularly slow and indolent. Some of these patients have lived for over 20 years, even without the benefits of the induction treatments most of us, including you, have experienced. More of us should survive for 10 &
20 years with the newer treatments available, and with newer still treatments being approved and new treatment targets being identified, the hope has got to be that some of us will experience myeloma as a chronic disease (like say diabetes) rather than a killer, and a few of us may well be functionally cured by CAR-T cell therapy, or bi specific antibodies or perhaps other treatments aimed at improving our immune systems.
Myeloma does invariably relapse at the moment, but there are better treatments available than ever before, and if you are able to take part in clinic trials other options are opened up. Some UK patients end up having 6, 8 or more different lines of treatment, if you respond to them as well as you have your first line, you could well end up dying of something other than myeloma, which is what I guess our haematologists want for us all.
If you harvested enough stem cells, another stem cell transplant might be very effective for you- a number of people in our local support group have had ‘remissions’ of more than 5 years from second SCTs.
Try not to worry about the future, you are more likely to relapse slowly and with warning, than for it to be sudden, requiring immediate treatment.
I hope you continue in your current remission for a long time to come, it does more recently diagnosed patients like me good to hear of long remissions after SCT.
Hi Emfen,
Welcome to this forum.
I first had contact with Myeloma UK before I was diagnosed, but when tests were pointing in this direction. The charity and this place are definitely the place to come.
It is always terrifying and soul wrenching when you or a loved family member gets such a diagnosis, and a fear is that the disease is a one way progression towards death. However for the large majority of us, that is far from the case. For example I was diagnosed 4 years ago, and for the past three years have had a near normal life (or would have done without the risk of COVID). After a year of treatment and recovery, I’ve had little sign of having cancer, and I’m totally confident in the monitoring I receive from my lovely hospital team. I’m in a very different place to the one I found myself in 4 years ago. The symptoms people can have at diagnosis vary widely (which is why it’s pretty difficult for GPs to suspect). Many people have quite significant problems with bones, kidneys high calcium levels and /or anaemia by the time they are diagnosed. Many have significant pain or mobility problems. However most symptoms greatly improve during and after treatment,for example one person in my local support was wheelchair bound for some months after diagnosis, but belongs to a hiking group and digs an allotment now, 18 years later! Her story may be exceptional but more of us will survive for longer now, as new & more effective treatments are being approved regularly.
I hope your mum gets a diagnosis, whatever it is, quickly, and starts treatment, the first step towards getting back to reasonable health.
I hope that you are home again & much better now Geoff. What a traumatic experience.
Best wishes, Jane.
Done
Could you give some more information and put a link to the petition please?
Hi Geoff
Sorry to hear about your anal fissure. My father had one. My father’s heart was too damaged to do surgery under general anesthesia & his hospital weren’t keen on operating but his quality of life improved greatly after it was repaired under local anesthetic. I hope yours is repaired soon, they are extremely painful.
Hopefully you will get to enjoy good health and sunshine soon.
Best wishes, Jane
I have been on lenalidomide maintenance for nearly 3 years & am seriously considering MRD testing to inform about the relative merits/risks of remaining on maintenance indefinitely.
I don’t think that MRD testing can give the degree of certainty I’d like, there is still professional uncertainty about which myeloma patients would do well without maintenance, and I know certain renown USA specialists are still recommending maintenance until relapse or side effects prohibit it, despite MRD test results. The depth of testing available is also another consideration- as this is a fast changing field . However, I still would be very interested to know what level of myeloma is detectable within me.
So far I have been told that (as Bear said) samples can be tested in Leeds, and possibly in London, and Sachbarnes has been told Oxford Churchill offers it. Is anyone aware of anywhere else?
Do you know if it’s ‘just’ flow cytometry which is offered or NextGen sequencing too?
Hi Jiffe
I’m sorry to hear that you have been so poorly,it must have been terrifying. I hope that your recovery is now well on its way and that your myeloma is now inactive and that you have a long period of ‘rwmission’.
Best wishes
Jane.
Hi David
You describe wonderfully the turmoil and chaos we all feel when given this diagnosis. Myeloma is a complex disease so it takes some time to understand the relative significance of our individual symptoms and test results, as well as dealing with the total disruption of our old lives caused by treatment and monitoring.
However most of us do go on to assimilate myeloma into our lives, our disease is not apparent to others and we can enjoy life again.
When we are diagnosed we are told that myeloma is incurable but treatable. It can take sometime to appreciate that the “treatable” bit is more significant than the ” incurable”. Myeloma research has been remarkably successful during the past 20 years, and new treatments are being approved by FDA every few months, NHS treatment is improving every year. There are an increasing proportion of us surviving for over a decade or even 20 years, and younger people such as yourself tend to do very well.
Its not a good idea to look for survival data on Google, much information is seriously out of date. Even GPs can give misleading information- mine told me I could be dead in 3 months, 4 years ago, and currently I am absolutely fine, no one would realise I have anything wrong & my life is pretty ‘normal’.
Expect to give a year over to myeloma treatment but after this there is every reason to hope for a good life again. You are not on a one way street.
Hi Henza68
Myeloma UK have recently launched a new peer to peer service for those affected by the disease, your wife can find details on the main website. A coordinator (Courtney) at the charity can arrange for your wife to have up to 6 regular phone or zoom calls with a fellow myeloma carer if she feels this may help.
As a patient I have often felt that the diagnosis is even harder on our spouses, we have no choice but to get on with the gruelling treatment, and generally experience alot of support and attention from professionals who know what they are dealing with, whereas our spouses are thrown in to the scenario without preparation, or medical knowledge and most of them do a totally amazing job of supporting us even though their own world is turned upside down as much as ours.
Hi Madison, this forum is just the right place to ask such questions, we have all been through the terror that you are currently experiencing.
We are not drs or medically trained so my information is from a patient’s perspective.
It is not ‘normal’ to have any paraproteins in the blood. Having said that, it is becoming increasingly apparent that it isn’t rare either, it seems 5% of the population, rising to 12% of over 80 year olds have a low level of paraprotein in their blood which usually remains stable over time. This condition is called Monoclonal Gammopathy of Unknown Significance, or MGUS in our jargon. A level of 3g/l is small, and would put you in that category. (Any level under 30g/l is usually called MGUS, unless the patient also has high calcium levels, anaemia, kidney problems or bone damage- ie clinical features)
Why you are being rechecked is because it is thought that everyone who develops one of several blood cancers, inc Multiple Myeloma will have had MGUS before developing the cancer. MGUS itself isn’t considered a cancer, as the cells themselves have no function. It is normally controlled by the immune system, which is able to keep the cells at a low, stable, inconsequential level.
However for a small proportion of us, our immune systems fail to keep the paraproteins (non functional immune cells) in check (usually due to chromosomal mutations we’ve acquired) and the sheer high level of these non functional cells damage organs and our bone marrow.
Myeloma isn’t usually a fast developing cancer, paraproteins tend to creep up (to begin with anyway,) so 3 monthly checks- or less often if the MGUS is stable over time- enables the small proportion (10% a year) who do develop myeloma to be caught at an early stage before organ damage.
I hope this is helpful. It is always shocking to be told that you have such a problem, and as you say, Dr Google tends to lead us down the worst case route rather than the most likely one.
I belong to a myeloma support group where one member has been living on a Mediterranean island over the past few years, flying to & from UK for 3 monthly check ups, to see family and to collect medications throughout the pandemic, without catching COVID. Another member who has lived with myeloma for a great many years (so perhaps feels on borrowed time) has holidayed every other month COVID restrictions permitting, and has flown frequently without incident. Recently they did catch COVID – after travelling within UK by train. (Had the antibodies & recovered quickly)
Having said that only one other member of the support group has felt confident to fly yet, (about now). Personally I really want to get back to seeing a bit more of the world, but I hesitate to book a flight with COVID infection rates as high as they currently are. Part of me feels the hesitation is irrational- life involves risk- but then I decide I’m being sensible & rational to wait. There is no one size fits all answer?
Hi Suzi123, my paraprotein level was 43g/l before I started treatment, so much the same level as you – I was diagnosed 4 years ago.
I found the diagnosis shocking to the core, and feared I was on a one way journey of increasingly poor health. Actually it hasn’t been like that at all. I had a combination of drugs known as induction therapy which meant that the hospital became my second home for a few long months, then a stem cell transplant which requires 3 months of taking extreme care of ourselves. In total a year was given over to myeloma treatments, but since then I have been able to lead a pretty normal, healthy life, hampered only by the risk COVID poses to people like us with compromised immune systems. I have only inconsequential side effects from the maintenance drug which has kept my myeloma totally at bay for the past 3 years, and I hope that it will continue to do so for a long time. When I was diagnosed, I was told that myeloma is incurable but treatable and it took me a long time to realise that the ‘treatable’ is much more significant for almost all of us. Myeloma research is prolific and successful. New treatments are being approved regularly, indeed you will have access to two treatments (Daratumumab & lenalidomide maintenance) that were not available to me. A cure, or more likely treatments to keep myeloma as a chronic disease rather than a life limiting one, is tantalisingly close.
We all recognise the shock you feel at the moment, and the preoccupation with myeloma & fear that we go through. Although myeloma gives us all a unique experience, most of us respond to treatment and go on to enjoy periods when our myeloma is inactive, and life is good.
I belong to a local myeloma support group where the leader has had myeloma for 19 years and four others for more than 10 years so far, and there will only be more people living with myeloma for these times & more in the future given the treatments now available.
