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).
Just reread your query
“polyclonal” is normal, good, produced by normal healthy immunoglobulins.
It’s monoclonal that are the worrying ones!
Light chains are usually found in higher than normal levels in myeloma when it’s diagnosed.
I’m not a doctor, your doctor or myeloma nurse will be able (& willing) to explain how this relates to you.
When I was diagnosed (I have IgG lambda myeloma) my lambda light chains alarmed me because they were 254. (The normal range for lambda light chains 5.7- 26.3 & kappa 3.3 – 19.4) However it’s the ratio of kappa to lambda light chains that is important in myeloma, it should be 0.26-1.65. Myeloma patients can have light chains in the 10s of 1000s.
Since diagnosis I’ve not had an issue with light chains, they went back down into normal ratio after my first cycle of treatment- ie within a month.
Hope this helps.
Hi Sandy-4, sorry you find yourself here with us, the exclusive club no one wanted to belong to…
Pps, paraproteins, shouldn’t exist at all, they are clone proteins which replicate themselves but don’t die. Any level of pp shows there is a problem, but not necessarily a problem that needs, or that the patient would benefit from, being treated.
Just to complicate matters the pp level that calls for treatment will vary from patient to patient, but a good percentage of the population have, unbeknownst to them, a constant low level of paraproteins. This is called MGUS, monoclonal gammopathy of unknown significance. If you have a diagnosis of MGUS you will be very unlucky if it does develop into full blown myeloma.
Everyone has a certain level of light chains. These are broken off pieces of antibody. Antibodies are made up of 2 heavy chains (Immunoglobulin G, A, M, D or E- or IgG, IgA, IgM, IgD, IgE) and 2 light chains kappa and lambda.
Myeloma can come in a variety of subtypes depending on what your abnormal plasma cells do. Most of us have IgG kappa myeloma or IgG lambda myeloma, some have IgA kappa myeloma or IgA lambda myeloma, fewer have IgD kappa myeloma or IgD lambda myeloma. (IgM disease is known as a separate disease) Some of us don’t make paraproteins at all but still have abnormal plasma cells making damaging numbers of light chains, these are known as Kappa light chain myeloma and lambda light chain myeloma. Just to complicate things a little further a small number of us have Non secretory myeloma where the abnormal plasma cells don’t make either paraproteins nor light chains, but still proliferate and damage the bone marrow and organs in the same way as other forms of myeloma. (This type of myeloma can only be measured by bone marrow biopsy). I hope I haven’t made it seem even more complicated!
Myeloma UK has various online leaflets that are very helpful in explaining myeloma and treatment. It is a steep learning curve initially, but there are now good treatments available which enable most of us to get back to a good quality of life once the myeloma is under control (which does usually take about 9 months)
