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
Hi Myelomamum,
Yes, it does sound as though you have been diagnosed early.
I was also diagnosed at 55 (in 2022), although my ‘kids’ are grown up.
You can read plenty of posts here on Myeloma UK outlining what your treatment plan is likely to look like. Quick summary: a mix of 3 or 4 chemo drugs for a few months, probably a stem cell transplant, then back on the chemo for a couple of months.
It can be a traumatic diagnosis to get. Personally, it took me a couple of months to get myself together and get on with my life.
Do you have friends and family around you? If so, they can be invaluable, whether it’s the school run while you have a hospital appointment, the odd household chore (there may be times when you are fatigued and need a hand), and of course there is the support, such as a shoulder to cry on, that you may need.
On the last of these in particular, Macmillan has helplines and meeting groups that can really help. You could look at their website more generally for help that they can provide.
I can’t pretend that it will be easy, but you can do this. Many of us have had myeloma for decades. Treatments are far better than they used to be (don’t start panicking if you come across some pretty depressing old webpages – things have hugely improved) and we are getting on with our lives.
All the best and please feel free to ask us any questions.
Regards
Rabbit
Hi Silver,
Glad to hear that your mother is coping relatively well with chemo. You asked for comfort and information.
I also have high risk MM, with t(4;14) and 1q21. You say that she has extra copies of t(14;16) (which is another way of writing 14/16). How many copies does she have? 1 is relatively common, but more is possible.
I haven’t had an SCT at all (partly due to a dodgy heart which an SCT could adversely affect). Despite that, I have been in remission since June 2023 and I am still going strong following my first line of treatment.
A tandem SCT is becoming relatively unusual, as the chemo drugs have been improving so much in recent years that a tandem SCT is less necessary, even for high risk cases such as your mother’s and mine.
The SCT process is tough, and your mother will probably need your help as she goes through it, but there will be light at the end of the tunnel.
There are also many new chemo drugs that have come out, such as elranatamab and teclistamab, that are pretty effective including with high risk cases (I read research papers which say as much).
It’s great that she is keeping up the exercise. As well as the normal boost to physical and mental health, research indicates that exercise boosts the immune system (such as the T cells) that are used as part of the immunotherapy ‘chemo’ treatments such as daratumumab.
Regards
Rabbit
Hi Davina,
The last 5 years must have been so tough on you both. I have MM and I have offspring in their twenties. To watch your son go through the diagnosis, treatment and side effects would have been traumatic.
You aay that he is coming out of remission. The chemo has improved over the last 5 years. New treatments such as bispecific antibodies have been approved and refined (the side effects are better controlled now), and they are highly effective for a large majority of patients. You might want to read the discussion on the ‘Treatment’ section of this forum about Elrantamab, for example.
He has to have treatment and you have to watch and help as best you can. There is no other way, but he and you will get through it, and there will, honestly, be better days ahead.
Regards
Rabbit
Thank you very much for the info!
Thank you, Davepr. That’s very informative. I am jealous about the £2.60 breakfast!
Just to clarify, are you allowed outside for a walk? I get restless (it’s just my nature).
Regards
Rabbit.
“As I put earlier if anyone has any specific questions they would like me to answer (or that I can pose to my Doctors) please just ask in a post…..”
If Davepr or anyone else can help me, I would be grateful.
– Are you in isolation or can you move about the hospital (and beyond?)?
– Is there a plan, maybe some months ahead, to reduce the dose frequency from weekly?
Thank you.
Regards
Rabbit
Hi everyone,
I just wanted to say thank you all for posting on this forum. I am in remission for now, but when I need the next line of treatment, my consultant has said that elranatamab would currently be his preferred next treatment for me.
I read technical research papers, which talk about ‘adverse events’ during clinical trials, but my consultant has assured me that since the trials, doctors have learnt how to manage side effects, and your posts are confirming that.
Regards
Rabbit
Hi Anne,
In recent weeks, Elranatamab, a bispecific antibody treatment, has been approved as a fourth line treatment in the UK.
See https://bloodcancer.org.uk/news/new-class-of-drug-approved-for-myeloma/
Regards
Rabbit
