Hi Koalacub
It’s always very shocking to the patient and family when given the diagnosis of myeloma & frightening even when there isn’t a pandemic. The best place for information about myeloma is Myeloma UK, either the information sheets or direct contact with the nurse or other staff, who are lovely.
There are at least a dozen subtypes of myeloma, and it’s thought myeloma is the cancer with the highest number of prognostic parameters.This means that myeloma tends to be a pretty individual disease, with different patients experiencing different symptoms, or degrees of symptoms at diagnosis and during the course of the disease.
However having said that, for most patients it is very treatable, and in USA now 14% of patients live for over 20 years.
When I was diagnosed, almost 3 years ago, I assumed that I was on a slippery slope, that I’d never feel significantly better. However that has not been true for me, and I am now perfectly well for the time being. There are a heartening number of treatments now for myeloma and your father is likely to start on a combination of treatments shortly, depending on any other medical problems he may have. It usually takes around 5 or 6 months (again this is variable) to get myeloma initially under control. About 50% of us then have a stem cell transplant to stabilise the myeloma, often giving a few years (sometimes more) without active disease. The problem is as yet that myeloma does always return, genetically mutated so that the drugs previously used are ineffective. There are a number of new drug types in trials now which may offer those of us in the early stages of myeloma, significantly longer lives.
Myeloma drugs are often called “chemotherapy” by us patients, but they are really much more targeted drugs. They do have side effects, usually, but not things like hair loss, and some of us get through with minimal problems except that the treatment process takes over life for a time.
Your father should have access to a named myeloma nurse who will be able to point your parents in the right direction, depending on you
How old is your father? The average age at diagnosis is around 70, but it’s a disease that can hit at any age, (although it’s exceedingly rare in under 30s.)
One of my friends was diagnosed in similar circumstances to your father and was wheelchair bound for around 6 months. Now 17 years later she leads a physically active lifestyle, long walks daily and looking after an allotment single handedly, no obvious evidence of the damage myeloma did to her spine.
It must be so difficult for you separated from your parents because of the pandemic, but I hope that your dad responds well to treatment (that may include more non drug treatment to his spine) Best wishes.
We have to be told of all the potential problems with SCT, it would be unethical not to warn people. However the majority of us have only have a few side effects, only a minority have many, a tiny minority have serious ones and a tiny minority have none. (Including this year, someone from my local support group….no nausea, sickness, diarrhoea, nothing- I’ve never heard of anyone being warned that could happen!). Certainly whilst the SCT experience puts a few people off repeating it, most of us are willing to go through it again if we get the chance, a bit like child birth?
My SCT experience wasn’t nearly as dramatic as I’d supposed. I was sick 3 times in the course of 14 days, only felt nausea at these times, had an odd appetite but could always eat something. I had complete fatigue days 9-11 so just slept which was alarming for family, but I wasn’t in pain. The biggest nusiance was diarrhea, but on day 12 I could literally feel myself getting better hour by hour, I have never felt so elated. I was discharged day 14, readmitted 2 days later with a virus (HPI) I’d picked up (& ironically sickness) but I didn’t feel ill ill, and in effect I convalesced in hospital for 5 days.
My neutrophil and white blood counts, which were within normal limits prior to the SCT have never fully recovered. I wasn’t expecting permanent damage to the bone marrow, which I seem to have sustained, presumably the melphalan. However I’ve had no infections since the HPI virus, which I recovered from as quickly as someone without a depleted immune system.
Luckily I’ve not had to face these issues with my myeloma to date, but did with my mother’s parkinsonism. We found our local authority occupational therapist, contacted through the GP very helpful. She did assessments whenever we asked, and arranged supplies of walking aids, a wheelchair, toileting aids, and eventually a hospital bed. We did have to hire a specialist wheelchair for a few months whilst waiting for one to be ordered for mum, but she was extremely physically disabled by then. The OT also advised on placement of grab rails etc. Not sure how this all works during the pandemic, but I’m sure there will be a system in place.
Your mum may also be entitled to a blue badge for car parking, and maybe for some financial benefits. The myeloma nurse should be able to point you in the right direction. It’s worth your dad writing down all the problems they are having so some don’t get missed tomorrow. Glad they are not having to wait for long.
I do a yoga for cancer patients class that is currently online. It has quite a meditative slant, & I find both helpful.
I found this class through a Maggie’s Centre.
Hi & welcome ptlelec. The RUDY study is most definitely genuine, Myeloma UK is one of the affiliated organisations. Taking part will not help you personally, but provides a one stop shop access for researchers to a group of patients willing to complete study questionnaires concerning health, quality of life etc. In time this should positively affect research, treatments and policy for all Uk patients with rare diseases (& hopefully myeloma specifically). I’ve been doing this for some time. It is little effort and feels like it’s an easy thing to do.
In terms of headaches and eyesight problems I believe dexamethazone is the acknowledged culprit. Quite a few patients develop cataracts whilst on treatment, which are later successfully removed and vision restored. Many of us find that vision deteriorates faster than it was doing before treatment. Without COVID the advice was to have regular opthamalogical check ups. I know my sight went on deteriorating after dex (I’m 2 years post dex, post SCT and on lenalidomide maintenance) & I intended having another sight test nearly a year ago, delayed due to COVID and personally I haven’t come out of lockdown since, so I am still waiting for it to feel safe to get a better prescription. Good thing is I don’t think my sight has gone on deteriorating further.
As you say it’s easy to feel fraudulent with this disease, for a start some of the symptoms we experience are vague and creep up, so become assimilated into our lifestyles. My consultant says “fraudulent” and “boring results” are the best signs!
I had a SCT, which I know isn’t the route for everyone, but afterwards, settled into a routine with maintenance, I do feel psychologically much better, that I’ve assimilated myeloma into my life. Health appointments no longer play a central role & I’d really be getting on with things if it wasn’t for the pandemic. But the pandemic is our generation’s equivalent of a world war, and one day like all things, it will end.
Your mother should have a myeloma nurse as part of her clinical team. In pre COVID days your parents would probably have known her (or him) and thought to have got in touch. I suggest getting in contact with the myeloma nurse or the haematology team. Your mum should have a card with an immediate response number on it given she’s in active treatment. The team, who will have access to your mum’s records, should be in a good position to help your mum and dad. It’s not usual to loose mobility so your mums team do need to know.
PS I know people with myeloma who were wheelchair bound for a few months who have gone back to having very active, fully functional lives so don’t loose hope, this is most likely a blip.
Graham Jackson is a UK, but world renowned, professor of medicine who specialises in myeloma and had led on various Uk myeloma trials as well as managing myeloma patients in a clinical setting. (Although he is retiring from this). He works with Myeloma UK and I think is on the board of directors.
10 January 2021 he tweeted:
“The data for revlimid [lenalidomide] maintenance is overwhelming, 4 large scale phase 3 studies, a meta analysis, and several population/real world data including a great population study from Canada. Revlimid maintenance is standard of care.”
If patients are not offered maintenance after SCT they could ask their dr whether the doctor personally would want to take Revlimid (lenalidomide) maintenance. Who doesn’t want to statistically improve their overall survival, to live longer, after all that’s why we went into treatment in the first place?
My understanding is that Bence Jones urine test is one of the bench mark tests for myeloma or possibly other blood cancers, so it’s presence is very suspicious.
Personally I would ask my GP for a referral to the regional hospital with a haemo-oncologist who sees myeloma patients routinely, as a second opinion. On hospital websites you can see details of the drs and consultants which give their special interests. I have found with myeloma that you have to act as your own advocate and that it really helps to find a consultant who you can trust.
Having said that, people can have low levels of myeloma cells (as I mentioned above) which their own immune systems appear to deal with (MGUS and Smouldering Myeloma). However as you have some worrying symptoms I would push for retesting, including a bone marrow biopsy, which is the definitive test. It’s painful but will give answer.
I hope you get some answers soon.
Hi Kash
It is perfectly reasonable for you to feel highly anxious waiting for your results. I think everyone on ‘watch and wait’ who has MGUS (the precursor pre cancerous state of myeloma) or smoldering myeloma (low level disease that doesn’t benefit from immediate treatment) would be very nervous. It seems to be part and parcel of myeloma, with everyone, whether with active disease or not, needing regular testing, always heightening patient anxiety.
If you were diagnosed with MGUS (monoclonal gammopathy of unknown significance) your risk of it developing into myeloma is only 1% a year (5% for older people), so for most people it just remains as an anomaly that doesn’t do them any harm. Fingers crossed for you.
Your symptoms don’t immediately jump out as those commonly reported by myeloma patients, although bladder incontinence is reported in the literature, but it is an odd disease which can affect many organs and body processes and I would tell your haematology team about your bladder issues (& aches). As you said it’s odd for someone of your age. Myeloma tends to be quite a slow disease, a marathon for patients rather than a sprint, so 3-6 monthly testing should pick the disease up before much damage is done.
I’ve found that over time it does get easier to manage the anxiety that goes with regular testing.
Hope this is helpful
On reflection Jillspikesmum if you are refractory to lenalidomide (Revlimid) this may not be the answer for you.
If you are not being treated by a consultant at one of the major myeloma centres ( where SCTs take place) it may be useful to get an option either from Tony Blau (a haemo oncologist who has myeloma himself, who has a web based myeloma patient data and information programme (free) called All4cure) or Brian Durie of Myeloma Crowd/ Healthtree. These are both organisations set up in America, but both have international following and outlook.
Patients in the Cambridge support group have been told that we should be offered vaccination by mid February…
Don’t hold your breath. (And it doesn’t apply to our nearest and dearest)
Thank you for posting Rose, I hope your father is recovering well. It takes some time, but oh so worth it for most of us!
Congratulations on getting such a positive result from your SCT. As you may have seen the Myeloma XI trial, conducted with 1972 UK patients over many UK hospitals categorically has demonstrated that UK patients who have SCT benefit from lenalidomide maintenance. Professor Graham Jackson and many other leading myeloma specialists have confirmed this. This is now standard of care in many other countries. Sadly for UK patients, against expert advice, the NHS/NICE in England and Wales refused to approve post SCT lenalidomide maintenance (Oct 2020). Without it a standard risk myeloma patient has an average of 30 months before their myeloma is active again. With lenalidomide maintenance the average is around 60 months- still rising since the study was published as some of the trial participants are still in remission 9 years on…..I haven’t got the statistics for higher risk patients to hand, but the benefit is still statistically significant.
It is not true that maintenance is unnecessary. It is expensive and NICE has decided not to fund it. However it is available in Scotland on NHS and all patients with private health cover are offered it. It is possible to copay for one drug but still to be treated within NHS, however the cost to a patient for lenalidomide is around £4000 a cycle which is prohibitive for virtually all of us. I have been legally importing lenalidomide from India for the past 20 months, after SCT in Feb 2019. My consultant and GP are aware of this and I receive standard treatment as if the drug was prescribed. Currently I remain in Complete Response.
I use an intermediary to obtain a prescription from an Indian hospital and to collect and send on the lenalidomide. I have had two samples analysed by mass spectrometry, both were found to be biosimilars containing the right proportions of lenalidomide.
There is a risk taking drugs manufactured in facilities which are not regulated by UK drugs agencies, and there was a scandal when an Indian pharmaceutical company was caught falsifying some records. That company was Sun Pharmaceuticals. Despite this most of the aciclovir I have been given by NHS has been manufactured by one of their subsidiaries, Ranbaxy. The NHS prescribe many generic drugs, and many of these are supplied by Indian pharmaceutical companies ….just look at your packets!
There are a number of UK patients that I’ve had contact with who are importing lenalidomide from india. Some are importing straight from Indian pharmacies or through acquaintances, others using the intermediary I use.
It is legal to import 3 months supply for your own use or for a close family member. The cost including shipping is about £120 per cycle. If you want to discuss this further, feel free to PM me. I hope this is helpful.
Mg/l is milligrammes per litre.
I’m sorry you’ve had such difficulties getting information, I’m sure that this is because of the pandemic pressure on NHS. It may be helpful to talk to lovely Ellen or one of the other myeloma UK staff.
The good thing is that your diagnosis is MGUS, which is very much a precancerous state. The chance of it developing into full blown myeloma is 1% a year, rising to 5% a year for older people (I think over 80s). MGUS itself (by definition) doesn’t cause you any harm, but multiple myeloma (hence the multiple) can have a variety of damaging effects, most commonly on normal bone processes causing lesions & fractures, kidney problems, anaemia, problems with calcium levels and the immune system.
To avoid these ‘end organ damage’s you will have regular blood tests to make sure that the MGUS is staying stable or only marginally rising, that way any damage to your bones, kidneys etc can be avoided. (By having treatment if necessary).
I too have found that my GP knows little about this condition (he was totally out of date about life expectancy when I was diagnosed), but myeloma is classified as a rare disease, so perhaps not so surprising. Myeloma UK really is a most helpful organisation, so do use them.
I hope you continue in MGUS. (There is a long term study being done in Iceland to find out the true proportion of people with MGUS in an entire population, and this may show that even fewer than we now think, develop myeloma.
Last night Blood Cancer UK held an online information session on Covid vaccination. Their view is that either vaccine will provide some protection for all of us,except during first 12 weeks post autologous SCT or first 6 months post allogeneic transplant. As this is a new virus, (unlike flu), none of us have any immunity to Covid so “some protection is better than none” . The vaccine has now been used by millions worldwide and virtually no vaccinated patients have needed hospital treatment- this Inc blood cancer patients- although some have been unwell with Covid.
The panel think it is achievable that we with MM will be offered a vaccine by mid Feb. The passive immunity on trial is likely only to be offered to very few, in very limited circumstances. Most of us will be given helpful level of protection from the AZ or Pfizer vaccines.
A European myeloma study has shown no MM drugs put us at increased risk, the risk for MM patients are older age, and uncontrolled cancer (ie not diagnosed & newly diagnosed most at risk).
