Hi Chrisska
Sadly your scenario isn’t that uncommon, ie as soon as induction treatment ends, myeloma returns, sometimes slowly, but sometimes dramatically like yours.
Its helpful that your Dr is seeking advice from the experts at the Christie who will have had plenty of experience of this.
Don’t worry unduly about needing a second line of treatment if you do, before SCT. If you need it, you do. By the time you need 4th line treatments new ones may well be available, research is moving on so quickly.
A close myeloma friend of mine ended up having 3 lines of treatment before having a SCT. But the SCT then worked (despite drs not being certain it would) and my friend was put on the same 3rd line drug as maintenance. My friend has been in remission having a good quality of life (lots of foreign travel included) for a couple of years so far.
I know of several other patients who’ve been given 2nd line treatments after an experience like yours, who’ve then moved quickly onto SCT without the delay of several months that many of us have, and this has worked for them.
I suspect that one day it will be possible to distinguish at diagnosis those of us who are likely to have this issue. At the moment only a very limited number of 5 or 6 higher risk markers are looked for, but it’s known that there are 63 driver genes that can be associated with myeloma. Myeloma is not really one disease, but a collection of very rare plasma cell cancers, and we are living with it at a time when medical science is still trying to differentiate between them. The good thing is that real progress is being made identifying new types of treatment that work, at least buying extra time for us.
What a traumatic year for you Lottie.
I hope 2024 brings you good health and opportunities to live a quality of life that were just not possible this year.
Despite missing your sister & brother in law, you will benefit from not having to live with enormous levels of stress.
I hosted Christmas this year with 3 families, I was the only surviving mother- the other two mothers, both in their 60s like me, were diagnosed with serious health issues after me, and died 2 & 3 years ago. It really made me appreciate that there are worse diagnoses for many of us with Myeloma.
Happy New Year, and many more to come.
As a patient I would think so. 0.01g/l is a very, very low level. Although there are exceptions, myeloma does not usually do organ damage until over 30g/l.
When I looked back at some hospital tests run about 9 years before my diagnosis, when I had a completely unrelated problem, there were some marginally anomalous haematological results which makes me wonder if I’d had MGUS at that stage, although neither I nor the hospital picked up on them at the time. Actually I got diagnosed fortuously just as my myeloma became active, so I wouldn’t have been treated any earlier than I was.
MGUS usually does not progress to Myeloma and evidence from IStopMM a study of the prevalence of MGUS, Smoldering & MM in Iceland suggests MGUS is more common than previously thought.
Welcome to the forum capt mh.
Diagnosis of myeloma is always traumatic, & life changing, but not to the extent of your experience!
With your test results I suspect that the NHS will quickly take you under it’s wing and get you medical advice & treatment.
If you can, choose to be treated at a regional hospital. Myeloma is a rare disease, a regional hospital will have drs who regularly treat myeloma and therefore are keeping up to date with myeloma research- a fast moving field.
Myeloma tends to progress quite slowly, so hopefully your long term health is not being compromised by your need to get “home” to Scotland before treatment starts, if indeed it needs to start straightaway.
You should have a clinical nurse specialist amongst your team who will be able to point you in the right direction to get advice re benefits or other help you may be entitled to.
With best wishes
I hope you feel it is positive getting these tests done and back for analysis.
Whatever will be, will be, but best to know, even if it doesn’t always feel like that.
Hi JB2514
The Committee is producing a report currently which I will share with you when it is finished.
It is heartening to have other patients interested in being involved in the project.
Jane.
Hi Emily
Please bear in mind I’m a patient rather than a doctor, and my experience of reading results is limited to my own.
Myeloma is multifaceted and tends to present differently in patients so you need a Dr to make an overall assessment of your blood test results.
The things I’ve noticed about your results are:
Your total protein level is in normal limits, I would expect it to be high in myeloma.
Your neutrophils are in good normal limits, often they are low in myeloma.
Your albumin level is fine, often this is low in myeloma.
Your haemoglobin level is good, suggesting you are not anaemic.
Your creatinine level is high, possibly in line with some sort of renal issue?
As you say, your burns will have affected blood counts.
In a nutshell, as a myeloma patient, these results do not raise obvious alarm bells.
I hope this helps reduce your anxiety while you wait to speak to your GP.
Best wishes, Jane
Hi Emily
Firstly you’ve come to the right place to offload your fears. It is terrifying to contemplate cancer, whether or not you finally are diagnosed with one.
Frothy urine is a sign of kidney problems, but not necessarily myeloma, which is just one potential cause of kidney issues.
The definitive test for myeloma in 75% of cases is an electrophoresis test, which a GP can order. This will show whether you have a spike of Monoclonal proteins (paraproteins) which would indicate cancer- or a pre cancerous condition.
It is now known that a significant proportion of the population have a condition called MGUS, Monoclonal Gammopathy of Unknown Significance, or MGRS monoclonal Gammopathy of Renal Significance. These are not cancer, but pre cancerous conditions with about 1% chance per year of it developing into myeloma.
There is also a half way stage called Smoldering Myeloma that is usually not treated, unless the patient has high risk features, but is monitored, “watch & wait”. There is a higher risk of this developing into multiple myeloma, but there are people who have been Smoldering for 20 years!
I was diagnosed with unconcerning (to the doctor’s) kidney issues when I was diagnosed with myeloma with an eGFR of around 55,(with frothy urine) so a lot lower than yours (although I was older than you, and kidney function does decline with age). Just for a reference, dialysis isn’t usually given until eFGR is 15mmol/l.
For me the first signs (only signs, then or now) were anaemia and fatigue.
The classic signs of myeloma as you’ve probably read are high calcium levels in the blood, kidney issues, anaemia, bone lesions/fractures,and/ or frequent infections.
My Bence Jones urine test came back negative, but I did have myeloma nevertheless.
Have you had a blood test looking for your serum total protein level? This should be between 60 & 80 g/l. Any figure much higher than this might indicate a Monoclonal protein.
There is a type of myeloma that doesn’t produce paraprotein, light chain myeloma, which about 20% of patients have. Everyone produces some low level of light chains in their blood, but under 26g/l. This is usually detected with the Bence Jones test.
I should have said this first. Information on the internet tends to be seriously out of date in respect of myeloma. There have been many newly approved treatments over the past decade and patients are often living with the condition for many, many years. The average age of diagnosis is 70, and peak age of diagnosis is 80. People diagnosed considerably earlier tend to live much longer than prognoses given on the internet. Actually the new treatments mean even drs believe prognoses are 10 years out of date.
Use Myeloma UK, or Healthtree Myeloma or the International Myeloma Foundation for research, not general internet searches. They are terrifying, and inaccurate.
Best wishes
The engagement event was very successful and there was a general level of enthusiasm from everyone present, not least the patients. I think the level of commitment from patients was a surprise to many of the professionals, who were inspired by what we patients said about our experience of the disease, and our future hopes. It seems several more hospitals are interested in becoming involved in the database, which will take the project on to the next stage. Several pharmaceutical companies attended and could see how the data could be useful to them. I hope this eventually leads to a funding stream, albeit without strings.
There were a number of data analysts present, who normally have no patient contact, who were enthused by the project suggesting new ways of using the data.
I’m sure there will be another event, although one hasn’t been arranged as yet. When one is I’ll post details on here so that anyone who is interested can get involved. If you PM me your email address I’m happy to give you the information directly.
Jane
Jane
Your Dr would not agree to you having a totally drug free period unless s/he assessed that the risks to you are negligible. Until a few years ago no NHS patients could have maintenance, and many enjoyed years of drug free life until relapse (some indeed are still in that drug free state)
Statistically we patients do better with maintenance, but research hasn’t been done into the effects of drug breaks- it may turn out that many of us would benefit from them.
I was on lenalidomide, 5 cycles of 25mg then 6 months 10mg then nearly 4 years 5mg.
I found lenalidomide a very benign drug. The only side effects were constipation, which I learned to control (prunes are very helpful!) and leg cramps which were brought under control with magnesium glycinate.
Certainly at 5mg I had no obvious fatigue even. I only dropped to such a low level as my neutrophils & WBC dropped on the 10mg dose so left me at risk from infections.
In terms of diet look up Dr Urvi Shah, an American Haematologist who is doing research I to myeloma and diet. She has posted things on You Tube. Also I find Tim Spector’s Zoe project useful.
Before taking supplements discuss what you intend to take with your Haematologist, just in case there are contra indicators. I’ve found they can’t recommend things as so little has been scientifically researched.
I’ve taken quite a few supplements, curcumin has certainly helped my osteoarthritis, and my autoimmune issues, but it didn’t stop the myeloma from relapsing!
I hope you have a long trouble free ‘remission’ from the myeloma.
Jane
Welcome to this forum.
Firstly try not to panic.
It’s positive that your father has been referred to haematology, who will advise the GP even if they assess that your father doesn’t need to be seen by them at present. GPs only see one or two cases of myeloma in their careers on average, so they are not experts in the condition and associated conditions.
Paraproteins are by definition abnormal, they are cloned cells, which ‘shouldn’t be there’. However a significant percentage of the population live with a low level of paraproteins which cause no obvious ill effects. This is called MGUS, or Monoclonal Gammopathy of Unknown Significance. A diagnosis of MGUS can be any level of paraprotein under 30g/l, although there are a few myeloma patients who have had some damage at levels under 30g/l, which is why cases need to be discussed with expert haematology consultant. I suspect your father has been told that he has a level of 5g/l, so at what is actually a pretty low level that is very unlikely to be causing your father physical damage. (BTW at diagnosis Light Chains can be in the 1000s,even 10s of 1000s, so a marginally raised level isn’t worrying from a haematological point of view)
Haematology will review your father’s results, if they think there is any chance of him having active (or Smoldering , a half way stage)Myeloma they will want to see him to give him a whole range of tests. If they recognise his results as indicating MGUS then they are likely to ask his GP to retest him every few months to see whether these results are stable over time.
If they don’t ask to see your father it definitely won’t be because they have written him off. Sometimes myeloma patients are acutely ill, very close to death at diagnosis, and they are definitely not written off!
I hope this helps
Jane
Our local support group were talking about neuropathy recently. Several members said they have revitive or similar cheaper versions and have found them helpful. I’m trying to borrow one from a friend at the moment to see if it’ll help me.
The complication is that myeloma is not really one disease. Myeloma is really an umbrella term for a range of very rare plasma cell cancers and pre cancers, with somewhat different, but overlapping presentations. Not all patients with active myeloma have skeletal lesions, so not having lesions does not preclude the diagnosis.Eg I was diagnosed over 5 years ago and have not had any bone lesions despite having active myeloma. You do have some anaemia which is relevant but if it is not very significantly below the normal range, drs do not seem to worry about it.
I’m not sure why your Dr would have ruled out MGUS if you still had an ‘m’ spike showing on an electrophoresis test, since a normal result would show no ‘m’ spike or Monoclonal band, but would be polyclonal. Any monoclonal band is abberant, hence MGUS .
Try not to worry if you are (re) diagnosed with MGUS. Most patients stay in that state, for whatever reason their immune systems are able to control cancer cell numbers down to a low, stable level, avoiding any organ damage.
With your awareness of possible symptoms of myeloma (those CRAB symptoms especially) you will be alert should you develop issues in one of these areas, and you should continue to be monitored with blood tests fairly regularly (in the UK this is usually on a reducing scale if a patient remains stable over years).
The bottom line seems to me (a patient, not medically trained) that if you have monoclonal paraprotein present, but no physiological damage, & not at a high level with immediate risk of such damage, then that is diagnosed as MGUS.
I hope your father’s consultant gets him the Blenrep and that it works well for him.
Hi kh0305
I haven’t personal experience of Blenrep but have spoken to a few other patients on it.
My understanding is that it is still only available as Compassionate Use, but is comparatively easy for consultants to obtain this way. My consultant is quite dismissive of it as his patients who have used it have had corneal ulcers which have affected their quality of life. However I met someone at a Myeloma UK Patient Information Day this year who has been on Blenrep for longer than any other drug, (I recall nearly 2 years?) and has found it the most benign myeloma drug ever taken. This patient has had intermittently itchy eyes, but most days has no visual problems and still drives. An ultra high risk friend of mine was on it for about 11 months until he became refractory. He didn’t have eye problems at all.
He’d had to wait several months to get Blenrep because his hospital didn’t have a nurse trained in the eye care /assessment that is necessary.
