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Thank you Mulberry. It was an awful and sad year. My sister suffered so much, she lost the ability to talk and use her fingers, very tough to watch. She is at peace now.
We had our Christmas with youngest son, daughter in law and two grandsons, first time for a few years so that was enjoyable.
We are off to France next week to see my daughter in law and granddaughter so really looking forward to that. Our first holiday for years, bit nervous but it has to be done. Eldest son split up wth my French daughter in law, so she has returned home to South of France. 2023 was a very stressful year.
I do hope you are keeping well.
Hope 2024 is a good year for you too with many more to come too.
Xxxx
Good morning,
My mother has just been told by her GP over the phone that she has Myeloma, we have not been to see a consultant yet, I’m looking for advice on what to expect or to ask, I’m not completely clueless on this as my father passed away seven years old of Acute Myeloid Leukaemia so trying to wrap my head round going back to a haematology unit. Any advice or suggestions would be greatly appreciated.
Thanks
Hi Kookie47
You may get more responses to your post if you start a new thread with this message.
Although GPs are often the first to mention the myeloma diagnosis, they are not necessarily well informed. The senior GP in my practice told me that I could be dead within 3 months, that was 6 years ago. Terrifying at the time!
Your mother is likely to get a quick appointment to see a haematologist (& may already now have that appt) but there will be a series of confirmatory tests before a certain diagnosis is given & treatment planned.
The one that takes some time to process is a bone marrow biopsy, not one we patients relish, but is made more bearable if time is given for the anaesthetic to work, or if gas and air is given. It usually takes about 4-5 weeks for these results to be available.
Patients will also be given scans to check for bone lesions, more blood tests to check how quickly myeloma is progressing. (This can vary from extremely slowly, even taking years, to quickly taking weeks)
If the patient has any serious end organ damage (very high calcium levels, serious kidney damage, serious anaemia or sizable bone lesions) treatment will start before all the test results are back, otherwise it’s a safe cancer to wait for a few weeks.
In terms of treatment, it’s likely to depend on your mother’s age and frailty.
If she is under 70 or extremely fit for her age, it could be recommended that she has a stem cell transplant after 4 (or so) cycles of induction therapy of Daratumumab, Velcade, Thalidomide and dexamethasone.
If your mother is significantly older,or younger but with other serious health issues, it may be determined that she’d do better with a less intensive treatment regime, of which there are several.
The aim of all of these, intensive or not, are to reduce the Myeloma level to as low as possible, either until it is imperceptible on blood tests (called ‘remission’) or until it is at a low, stable level. Although statistically uk patients still have longer remissions after stem cell transplants, the process does have the potential for bad side effects (bone marrow damage, potential for secondary cancers later, doesn’t always work), and the approval/availability of recent new treatments are making SCT a more questionable treatment. More lines of treatment are now likely to be available to all of us, and with maintenance now the norm, continual treatment will be usual for both those who have stem cell transplants and those who don’t.
It is heartening that people are living longer with myeloma than ever before, although it’s still exceptional, one of my friends who was not expected to come out of hospital at diagnosis, is about to celebrate living with the disease for 20 years and our local support group has quite a few months members who’ve lived with the disease for over 12 years now.
Hello
Can anyone on the forum tell me if having one genetic mutation, automatically means I am high risk and therefore Stage 3? Or does assessing risk and stage depend on other factors eg K/L ratio? My consultant says they don’t Stage patients any more but I see some people on the forum have this information about themselves. Maybe different health boards do things differently but can’t help thinking if less than good news is avoided. I’d appreciate any thoughts or advice.
Newly diagnosed and still getting my head around it all!
Thanks
Anne.
Hi Anne,
Welcome to this forum. Although the diagnosis of myeloma, and what it means, is pretty traumatic, many of us have been there (and most of the rest of us are the family and friends of those with myeloma).
The short answer to your question is: using the Revised International Staging System, you would be in Stage 2 or Stage 3.
From cancer.net (https://www.cancer.net/cancer-types/multiple-myeloma/stages
Revised International Staging System)
“The Revised International Staging System (R-ISS) is now used more commonly to classify multiple myeloma. The R-ISS is based on data collected from people with multiple myeloma from around the world. The system has 3 stages based on the measurement of serum albumin, lactase dehydrogenase (LDH), and serum beta-2 microglobulin (β2-M) and whether high-risk chromosomes are found using the fluorescence in situ hybridization (FISH) test (see Diagnosis).
Recent efforts have been made to further classify myeloma based on patterns of gene expression in myeloma cells. This is an ongoing area of research.
Stage I: All of the following apply:
β2-M less than 3.5 mg/L
Serum albumin of 3.5 g/dL or more
Normal LDH
No high-risk chromosome changes in myeloma cells found by FISH test
Stage II: Not stage I or stage III.
Stage III: β2-M is more than 5.5 mg/L, plus one of the following:
Myeloma cells have high-risk chromosome changes found by FISH test
High LDH”
However, Anne, the treatment is the same: chemotherapy and typically (not always) a stem cell transplant.
I was diagnosed with Stage 3 myeloma (with 2 genetic mutations) in December 2022. I have been in remission for 10 months now and am enjoying life!
Happy, of course, to discuss further.
Regards
Rabbit
Hi Rabbit
Thank you for your reply. I’m glad you’re in remission and enjoying life. May I ask if you had STC or is your treatment only chemotherapy? SCT maybe an option for me but I’m also interested in other options but not sure how often chemotherapy is administered once someone is in remission.
Can I also ask if life has returned to a near normal for you? Thinking of infections, social distancing, energy levels and anything else! You sound as if you’ve a handle on myleoma and getting on with things which is great to see this is possible.
Thanks again
Anne
Hi Anne,
Taking your questions in turn:
May I ask if you had STC or is your treatment only chemotherapy?
You are welcome to ask – I am an open book on this forum! However, as any member of the public can read my posts, I prefer to stay anonymous and call myself “Rabbit”. Otherwise friends, work colleagues etc could come across some very personal information about me.
I have not had an SCT (stem cell transplant). Reasons:
– I have a comorbidity (something else wrong with me): a dodgy heart. An SCT would put a bit of a strain on my heart, so my haemotologist and cardiologist discussed me and agreed that it would be best if I didn’t have an SCT.
– I have had my stem cells taken (it’s a process like a few hours of kidney dialysis) and frozen, but they were only able to take enough for one SCT. Lenalidomide (also known as Revlimid) is a chemo drug which I take: after a few months taking it, it damages the stem cells. As far as I understand it, that one dose is all I have got (although someone in my family may be a match and be able to give me stem cells).
– The initial chemotherapy that I had went unusually well, therefore less need for an SCT in the short term.
– There is recent research indicating that an SCT is less necessary than it used to be, simply because the chemo drugs have improved so much.
All the above is based on my own experience and (on the ‘recent research’ point) info from my consultant. The most important thing is that you talk to your consultant. I would also suggest reading up (this might not suit everyone but my background is in science – but NOT medicine), thinking it through and discussing with family and/or friends.
“… not sure how often chemotherapy is administered once someone is in remission.”
Personally, I am on a 4 week cycle of maintenance treatment during remission.
Day 1: Daratumumab injection and dexamethasone.
Day 2 – 22: Lenalidomide.
Day 23 – 28: No chemo.
I also take Vitamin D, Aciclovir and Lansoprolole daily (all presecribed)
Can I also ask if life has returned to a near normal for you? Thinking of infections, social distancing, energy levels and anything else!
Overall, I would call it a new normal. I have semi-retired due to fatigue (see below), although I had been starting to think that way anyway. Focussed more on enjoying life and family. Been on a few holidays in remission.
I have had a couple of infections (gastroenteritis and a horrible cough that took weeks to clear).
Social distancing isn’t difficult for me as I have been working from home since the first Covid lockdown, but I do day to day things (shopping, eating out, going to the gym etc). I am much more cautious about big groups of people (I wear a mask).
Energy levels have generally been the biggest chemo side effect for me: I routinely had a nap during the day until remission started.
One thing that I would specifically mention is exercise: I used to be a gym fiend, but the chemo made that impossible. I still walked as much as I could, as the evidence is that exercise is great for physical and mental health. On going into remission, I restarted in the gym from a very low base (warning: this was only after talking to my consultant and a physiotherapist about what exercise I could handle without risking bone fractures).
Regards
Rabbit
Hi Rabbit
Thank you for your response. I completely get it about being anonymous!
My consultant also mentioned recent drug developments mean SCT is becoming less necessary. The fatigue seems to be a common thread, which isn’t surprising as our bodies have a lot to deal with so little wonder we need have lots of rests!
You’re fortunate you restarted the gym. I’ve already got bone fractures so my exercise choices are limited to probably just walking. Hobbies like Pilates and swimming probably are no longer an option for me. Can’t believe how much myleoma has affected my life. I’m still in process of how to “live with it”, which might come after I’ve learned to accept it. Thinking a local support group may help. If anyone is a member of one, I’d be keen to find out if you find it helpful.
Thanks again Rabbit. Your reply is really useful.
Anne
From having MGUS that was stable for 3.5 years I then got a fracture in my back and over the last 10 days had Scans and bone marrow biopsy which confirmed Myeloma is active with many lesions. Start 4 lots of Chemo Friday with stem cell transplant around October. I’m 52 female with lots of living still to do. It’s very overwhelming but hoping forums like this will be helpful. Hello everyone x
Hi Sheldon71,
Sorry to hear of your diagnosis. I was also 52, nearly 53 when diagnosed. It came completely out of the blue for me as I had had no previous health issues at all. It only came about through a series of tests when I went to give blood and my haemaglobin levels were low so it was a total shock to me. But being relatively young and fit meant that I coped with all of the treatment well, the chemo, the stem cell transplant and the DDVT cycles following that. It was a long 12 months but I just kept telling myself there would be an end to it and then I would hopefully be fit and well again and in remission for hopefully several years. And that’s where I am now, on maintenance treatment and feeling happy and healthy. We’re flying off to Budapest for a few days next week, my first holiday abroad since diagnosis 2 years ago. So you will still be able to do all of that living, just let the medicines etc do their job. Treatments are evolving all the time and people are living longer with this condition, so have faith that us younger ones may be around to try further new treatments in the future. And one day we have to hope that they may even find a cure!
X
Hi Lottie,
I am new to all of this to. So much to take in. I was stable with MGUS fro 3.5 years then got a fracture in back and now myeloma is everywhere. My numbers went from 13 to 28 in months. Still not really sure what that means but start chemo Friday. Good luck with everything / I’ll be routing for you and every other sufferer. it’s a journey but lots of positive outcomes x
Hi Shelden 71,
Sorry to hear you have been diagnosed. My PP’s were 30 at diagnosis. I don’t know about light chains etc. I leave everything to the consultant. I know there are different types of Myeloma only found what I was after STC. I never get a print out of bloods, my consultant tells me each month my bloods are good, I always ask what my Neutrophils are so I know if I am at risk of an infection.
I was started on Daratumumab, Velcade, Thalidomide and Dexamethasone. My PP’s came down very quick. Had my STC Jan 2023 which all went well with very little side effects. I was started on Lenalidomide April 2023 and so far very few side effects.
I have monthly bloods, Zometa infusion and telephone calls from consultant. All good so far.
Unfortunately, we managed to pick up CoVid recently. I was put on antivirals and was not unwell with it. We had gone to the Lake District, first holiday for 3 years, no idea how I managed to get it as we were in a rented cottage and walked most of the time and ate outside.
I was on a course recently in Scotland organised by Rainbow Valley, covered nutrition, stress, anxiety, sleeplessness it was very interesting and has helped me a lot.
I do try to be positive as that helps but it isn’t always easy.
Good luck with your treatment and take one day at a time. Anything you want to know about my experience, please ask.
Best wishes
Linda
@sheldan71 @lottie
Hi to both of you.
My experience has been very much the same as Linda.
The only difference was I had tandem transplants Oct 2023 and Jan 2024.
I also take Aspirin.
I am also now on lenalidomide maintenance since April 2024.
I personally do not feel as well as I did but making the most of life as best as I can.
We all try to be as positive as we can.
I do avoid crowded situations because of suppressed immunity but that is up to individuals.
I also have an understanding with Grandchildren and their parents that they do not visit with any coughs or colds.
You need to do what is right for you though.
Hope all goes well and continues to go well for you both.
You should find that your fractures heal during chemo, and as you get stronger afterwards, you can get back in the pool! This was certainly the case with me.
During Chemo I was not able to do much other than walk about the ward, and then at home, but I realised chemo was working for me as my fractures healed. I had one particularly annoying fracture in my sternum, that meant every time I coughed or sneezed I would scream out in pain| Nursing staff used to panic thinking I was having a heart attack until I explained I was ok. This fracture healed quite early on during chemo thank goodness.
After Chemo, I had an SCT, and have been on Lenalidomide, 10mg daily (21 days, then 7 off) since Jan22.
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