Hi pebbles,
My layperson understanding is: no.
Paraproteins are in indication of myeloma or similar/related conditions such as MGUS.
Total serum proteins, as the name suggests, measures total proteins, which can include paraproteins but can be high for completely different reasons. See https://en.m.wikipedia.org/wiki/Serum_total_protein
Regards
Rabbit
Hi Daffodil,
For me the emotional/mental challenge at diagnosis was pretty bad. It came out of the blue: I had seen a haemototologist about bleeding, she ordered lots of tests, and then I was referred to an oncology department!
I was only 55, and learnt that I was already at stage 3 (there is no stage 4 for myeloma). I was also ‘high risk’: in plainer English my myeloma is among the (roughly) 25% that is more aggresive as my chromosomes are abnormal.
I don’t have friends, and my immediate family were all struggling themselves with my diagnosis, so I had to bottle up much of how I felt.
One day, one of my adult ‘kids’ told that I should stop feeling sorry for myself. Although a brutal message at the time, he was right to do so. I am now getting on with life, going on holidays, enjoying music, film and TV, and leading a healthy lifestyle.
I do get low from time to time, but on the whole I am now pretty cheerful and relaxed.
Regards
Rabbit
Hi Daffodil,
I agree with glenc that the effects vary so much from one person to another.
Background: I do office style work from home (and have done for years before my diagnosis).
When I was diagnosed, I went on sick leave, but it was partly a matter of mental health after getting such a life changing, traumatic shock.
By the way, I had the same treatment as glenc (which is pretty standard) except that I had lenalidomide instead of thalidomide. I didn’t have an STC.
When the GP asked me how long the sick leave certificate should be for, I picked four months out of thin air. After that, I came back gradually to work.
However, working full time again proved impossible due to fatigue, so I took a few hours off here, a day off there. It was a messy set up both for my employer and for me. They never knew when I would be well enough to work, I would push myself to work hard even when I wasn’t really up to it. After a year of that (in remission), I arranged with HR to go part time, with my work spread over the week.
I call it semi-retirement. I have more time to enjoy myself, and no guilty conscience. Meanwhile my employer – which has bent over backwards to support me – knows where it stands.
Regards
Rabbit
Hi Andy and Colin,
I take “Love Hemp” CBD oil drops.
(judging by the weird spam messages that appear on this forum, I doubt that the adminstraters would mind mention of a commercial product which is actually relevant to myeloma patients!)
Especially as it costs a few pounds, I suggest buying the smallest amount to try it out (normally £14.99).
Again, I gain nothing – except the satisfaction of trying to help other myeloma patients – from sharing my experience.
Regards
Rabbit
Hi.
I have a suggestion, although I discovered this while in remission (so the weekly dexamethason had become monthly at that stage as part of my maintenance).
CBD oil has helped me enormously with sleep. I did some reading up: Holland & Barrett sell high quality CBD oil. You squirt a few drops under the tongue from a small bottle.
I know this sounds like an advert, but I have nothing to gain from advertising. This is simply my experience.
Regards
Rabbit
Hi cjleeds,
I haven’t had BAM but I have to comment on how you seem to have been treated.
If you were diagnosed in November 2023 but treatment didn’t start until February 2024, that was around 3 months in which the myeloma was allowed to run riot.
Then you self-diagnosed BAM, but your consultant diasgreed and you went through an unnecessary side effect until now.
Consultants have the technical knowledge but they are not infallible gods. Us patients, I believe, have to build up our knowledge (by the standards of laypeople) and stand up for ourselves.
Likewise, the NHS is on its knees and we have to make sure that we get the treatments we need when we need them.
Regards
Rabbit
Hi Sue,
At diagnosis, my paraproteins were 31 at diagnosis, but they have been ‘undetectable’ for a long time now. However, paraprotein tests are not that sensitive.
A more sensitive tests relates to the type of MM. There are two types of “light chains” in everyone’s blood, called kappa and lambda. In myeloma, one of those two is – for most patients but not all – there in huge quantities.
In my case, for example, my kappa light chain was something like 4500 at diagnosis but now in remission it is around 30.That is a much more healthy level. The ratio of kappa to lambda is often used as a fairly sensitive test of myeloma levels.
Regards
Rabbit
Sorry for typos in my last message. Dexamethosone always messes me up in that respect for a while 😀.
“eatablish” should be “establish”.
“Some people or too frail…” should be “Some people are too frail…”.
Regards
Rabbit
Hi Sue,
You asked me a couple of questions.
– No, I have not had a stem cell transplant. Some people or too frail or (my situation) they have another issue which would make a transplant dangerous. In my case, I have a dodgy heart.
– I have been in remission since June 2023. Having just come home from being tested and getting a daratumumab injection today, I go into November 2024 with another cycle in remission 😀.
– By the way, you say that I am knowledgeable: I actually read myeloma research papers! I want to know my enemy. My background is in science (but not medicine), so I do what I can to understand treatments together with their effectiveness and side effects, as well as eatablish what I can do to optimise my health in the face of myeloma. Some of it does go over my head, though!
Regards
Rabbit
Hi Sue,
On the treatment for the first few months (which is ‘induction therapy’), the most obvious question is what chemotherapy you are going to be on. This will typically be 3 or 4 drugs.
Something like lenalidomide = Revlimid, bortezomib = Velcade, daratumumab = Darsalex and dexamethasone. There are variations on this, such as thalidomide inatead of lenalidomide.
The ones that I have put in capitals are brand names, like Disprin is really just a branded version of aspirin.
I suggest asking for your blood results, such as what type of myeloma you have (e.g. kappa light chain or lambda light chain) and what the initial amounts of both of these are. That will give a baseline, so you can track progress as the myeloma cells get killed off.
You should be able to get the detailed results from your NHS medical records (when they get into your records, which can take a little while).
Regards
Rabbit
Regarsa
Hi Sue,
You raise a number of questions and topics:
– “work through tge first part ofy treatment , my boss is very flexible and i can work from home”
That’s good. The treatment is likely to make you vulnerable to infection, so working from home means that you can’t pich up bugs from colleagues.
– On losing your hair: the initial treatment (the first 3 or 4 cycles) doesn’t normally do that. The stem cell transplant does cause hair loss, but you can tell the children that it is only temporary and that you could be around well into old age (people are living 20+ years with myeloma).
– On vaccines, by all means ask your medical team. It sounds sensible to have jabs.
There are many myeloma treatments and more are being developed and approved all the time. As my own kids would put it: you’ve got this!
Regards
Rabbit
Hi Sue,
Although I am not familiar with plasmacytome, I have myeloma (and I have done a lot of reading up), so I will restrict my comments to that.
Chemo side effects vary so much from one patient to another. Some sail through it, some find it really tough. Therefore I don’t think that it is possible to give reassurance.
This is not a pleasant message to give or receive, I know, but planning for the worst whilst hoping for the best seems the best strategy.
I suggest making contingency plans:
– You and your husband telling employers about the situation. Employers are generally understanding (you also are disabled under the Equalities Act 1990, so you have some legal protection).
– If your children don’t do many chores, it could be a good time to show them how to use a washing machine, how to make their beds etc.
– Do you have any friends or relatives who can help, whether it’s doing school runs, shopping or whatever?
– If someone could go with you for your next appointment, you may be given a lot of information and have many questions. Going with someone could really help.
– For the stem cell transplant specifically, you are likely to be in isolation in hospital for a couple of weeks. If you could time that to be when your husband is in the UK, great, but it may be more than 3 weeks and you may well feel pretty weak when you come out (and vulnerable to infections).
I hate being the bearer of bad news, but the treatment ahead may be tough. Better to be ready for it. It won’t be forever – for example, I went through chemo and have been in remission since June 2023.
Please let us know how you get on.
Regards
Rabbit
Hi Birder,
You – and your wife – are clearly going through so much. This is so tough for you and I wish that I could help.
Do you have any friends or relatives who could assist you? The only other thing that I can suggest is that you contact 0808 808 00 00
There are two obvious areas of questions.
Why is the myeloma so aggressive?
One reason could be that your chromosomes may be ‘messed up’ (or to put it more technically, you may have chromosomal abnormalities). This happens in around 20% – 25% of cases, and would make your case high risk. There are several different kinds: mine are t(4; 14) and +1q. The more abnormalities, the higher the risk.
What will the treatment be?
This is pure guesswork, and I am a patient, not a medical professional, but it would strike me as strange if you were given similar chemo to what you have had already. For example, if you have had lenalidomide and that hasn’t worked, I would be surprised if you were now given thalidomide (which is similar).
One recently approved chemo is elranatamab. It is a bispecific antibody treatment (there are alternatives: teclistamab and talquetamab). They work in a completely different way, and seem to be pretty effective in high risk cases. There is a discussion in the Treatment section here about how things have gone so far for patients on elranatamab.
As I said, all this is personal guesswork. If you could get access to your NHS medical records (maybe via their app), they should contain more info on what is going on.
Regards
Rabbit
Hi birder,
What you are going through is tough, even by the standards of us myeloma patients.
When you say that your myeloma is aggresive, does your consultant mean that it is “high risk”? This means that the chromosomes are abnormal (I have this). If so, there are treatments that are pretty effective. Happy to give more info if this is the case.
More generally, there are many myeloma treatments around these days. Do you know what your consultant is planning for you to have?
Regards
Rabbit
Hi Molly,
I have done quite a bit of reading up on myeloma and I would agree that confusion is unusual (although I am a patient not a professional).
To get some background, I looked at your past messages on this forum but found nothing since 8 years ago.
Has your mum been on treatment? Even if any chemo that she has been on has not been causing her trouble in the past, the effects can be cumulative, and some chemo can affect the brain.
Regards
Rabbit
