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
Hi Anne,
The combination of drugs given within a line of treatment have been shown to be effective in a clinical trial (unless the patient is actually in a clinical trial).
“Heard first line are most effective with fewer side effects but not sure this is the case.”
That’s broadly right. The effectiveness and side effects can vary unpredictably from one person to another, though.
Also, when a drug is first approved, it may be approved only for the later lines of treatment. Then if more data is accumulated on efficacy and side effects that is favourable, it may be approved for earlier lines of treatment.
Regards
Rabbit
Hi Anne,
When someone is diagnosed with myeloma, they are put on treatment. That is the ‘first line’ (typically chemo + stem cell transplant). Assuming that this puts the patient into remission, the remission may well end at some point, and a new, different* treatment is needed. This is the ‘second line’. And so on.
* The nature of myeloma cancer cells is that they can ‘evolve’ and ‘develop resistance’ to medicines, a bit like bacteria developing resistance to an antibiotic. Therefore a new line of treatment is generally different from the previous ones.
Regards
Rabbit
Hi kmc1,
You asked about tests for hypercalcaemia. My blood gets tested for calcium levels. The normal range is 2.10 – 2.25mmol/L. At diagnosis, my calcium level was far higher, but are now consistently in the range.
Remembering my A level chemistry from many years ago, mmol/L is millimoles per litre.
There are actually 2 mwasures taken for calcium, as is and ‘corrected’ but my calcium kevels are always about the same on both measures and the normal ranges are the same.
Hope that makes sense.
Regards
Rabbit
Hi,
I know that this response does not answer your request, but it still seems relevant. I am geeky – although I also want to ‘know my enemy’. Anyway, the link below compares the effectiveness of KRd compared to DVd (albeit in newly diagnosed cases):
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10368661/
In summary, with KRd, the myeloma did not return for a significantly longer time than with DVd (‘significant’ in both the day to day and the statistical meanings).
You may or may not want to mention it to your doctor.
By the way, you phrased your options as DVd or KRd or transplant as though only one of these were possible. Couldn’t you have DVd or KRd as induction therapy before a transplant?
Regards
Rabbit
Hi kmc1,
There are 4 classic symptoms of myeloma.
– hyperCalcaemia, which high levels of calcium in the blood. If you believe that you have myeloma, this would be an obvious bkood test.
– Renal (=kidney) failure. Although constant thirst can be an indicator, your kidneys have been found to be normal, so that seems unlikely.
– Anaemia. Again,if you believe that you have myeloma, this would be an obvious bkood test.
– Bone pain. You have that, but there is an alternative explanation.
I am a layperson (with myeloma), but my best guess as someone with myeloma myself, is that if you don’t have hypercalcaemia nor anaemia, then myeloma seems unlikely.
Regards
Rabbit
PS This is very speculative from me, but you mention that your liver function tests are high. In reading up on constant thirst as a symptom, liver conditions cropped up again as a potential cause (and swollen ankles got mentioned too in that context). Reminder: I am a layperson, so please don’t rely on me!
Hi Annieslp,
So sorry to hear about your dad. I hope that you and he are bearing up well, and that at least he is not in serious pain.
Please bear in mind that most of the people of this forum are myeloma patients and family/friends of those with myeloma. Although we generally have experience of and knowledge about myeloma, we are not (generally) medical professionals. You are asking for a prognosis, which is something that even doctors would hesitate to give.
Having said all that, how is your Dad now? Can you give us info please (so we have something to go on), such as myeloma stage and some blood test results. How is he responding to steroids?
Regards
Rabbit
Hi Ree2112,
Being a myeloma patient is tough, physically and mentally, including during remission.
One of the first things that I asked my doctor when I started treatment was: how many patients work full time? He said that very few do so. Some had already retired, but among those who were working, most go part time or stop working altogether.
I went on sick leave for the first few months, then gradually built up my hours again, but I couldn’t work full days due to fatigue. My employer kept paying me (although the rate reduced for the hours when I couldn’t work).
Although I am in remission, I have had side effects from eye problems (fixed a few months later with cataract surgery) and I sense that my brain fog is slowly increasing. As I need to really be at my mental best to my work, ‘full time’ became more and more difficult, and a misnomer due to the fatigue. I therefore came to a deal with HR to go part time and focus on less mentally demanding areas.
I don’t feel one twinge of guilt – and neither should you. I was open and honest from the start, and followed my employee handbook to the letter.
Do what is right for you, and look after yourself.
Regards
Rabbit
