Hi Macklebae,
Thanks for your question.
It would be wonderful if a chemo drug could boost platelets!
No, nothing like that. I have Dara as part of my maintenance to make it more effective. One extra reason for that is that I am a high risk case, due to chromosomal abnormalities.
I like to be well informed on MM and treatments for it, so here is a research paper justifying Dara being part of a maintenance regime (not solely for high risk cases):
https://ashpublications.org/ashclinicalnews/news/7756/Daratumumab-Effective-as-Adjunctive-Maintenance
Regards
Rabbit
Hi Brewy,
I am also in remission and have platelet levels at around 50. I can’t answer your question, but I think that my situation is relevant.
Having gone back through my NHS medical records, my platelets may have always been low (they were below the normal range way back in 2007 at least). When I was going through the first line of treatment (roughly speaking, the first half of 2023), they went down to as low as 23, which did mean that I couldn’t get all the chemo that I would otherwise have had.
However, I have been in remission for a year now, and despite my low platelets that has meant lenalidomide daily for the first 3 weeks of each 4 week cycle, plus an injection Dara at the start of each cycle.
I am aware that consultants can disagree, and that there could be some other factor for all I know, but I am an example that it is possible to have lenalidomide whilst having low platelets. Happy for you to share my story with your consultant, or for me to talk directly with your consultant. Much as I respect them, they are not gods.
By the way, if anyone is wondering why an infusion of blood platelets wouldn’t deal with the issue: it can only work in the very short term (a few hours), before the platelets get broken down again in the body. I have had this done but only as a quick and very temporary fix before a bone biopsy or cataract surgery, not as any kind of solution.
Regards
Rabbit
Hi Anne,
You ask about chemo side effects. These can vary enormously from one person to the next. The single most common side effect is fatigue: don’t be surprised if she sleeps for a while during the day.
The dexamethasone can cause sleeplessness at night. When my kidneys failed, I was going to the toilet every hour or so at night, which further disrupted my sleep.
You mention swollen ankles: i had that too. My feet also swelled to one size bigger than normal (and I happen to have huge feet to start with!). The consultant can prescribe something for water retention.
There can also a bit of mental confusion in the early days: that eased off as my body acclimatised to the chemo.
I would not understate the mental health aspect. A diagnosis like this is so tough to take. Family support (and if applicable, religious support) can help so much.
Regards
Rabbit
Hi Silver,
Welcome to the forum.
To start with a bit of info, the four classic symptoms are:
– hyperCalcaemia (high levels of calcium in the blood).
– Renal failure (kidneys stop working).
– Anaemia
– Bone pain.
They are known as CRAB for short.
In your mum’s case, the cancer cells have taken calcium from the bones, which has leached into the blood (hypercalcaemia), which ovrrloads the kidneys (renal failure).
The chemo that your mum is on (which is more or less standard) should kill off a lot of cancer cells relatively quickly, which would deal with the hypercalcaemia and let her kidneys recover.
Although I am only a layperson, I went through this around the time of diagnosis.
You don’t mention bone issues (pain or fractures) and you say that she was doing regular exercise. In those circumstances, I would suggest encouraging her to exercise as best she can, when she can, rather than conserving her energy. It is really tough doing this, but the rewards in terms of both physical and mental health can be enormous.
She can get through this and so can you.
Having myeloma, and caring for someone with myeloma, can be hellish, but most of us on this forum know what it is like and can give lots of support and advice.
Regards
Rabbit
Hi Keith and welcome to the forum.
Getting the diagnosis of myeloma has been pretty traumatic for many of us (me included). Yet it is possible to develop some kind of new normal.
I am reminded of Churchill’s speech “I have nothing to offer but blood, toil, tears and sweat” (although I don’t think that the ‘toil’ part is applicable and the ‘blood’ part has a completely different meaning in our context).
Chemotherapy is tough, but patients get through it and routinely enjoy long periods of remission (my current status – I am off on holiday in a couple of days).
Sorry about your mum. My parents passed away some years ago, but I still had an instinct to run to them for comfort when I was diagnosed.
If you want to give your email address (warning: this forum attracts spammers), I would be happy to contact you one to one.
Regards
Rabbit
Hi Grandmat,
Thank you for explaining.
Lenalidomide is pretty standard maintenance chemotherapy now, and I think I am right in saying that it is the best in that role currently (or as researchers would put it, it is the ‘standard of care’), unless there is a specific reason otherwise for that patient. I am on it myself.
In terms of the trial, whether or not your husband is getting Ixazomib, my best guess is that he will be kept on the current maintenance until/unless either the side effects get too serious to continue with, or remission ends.
Regards
Rabbit
Hi Grandmat,
I did a bit of reading up on the Fitness trial from here: https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-ixazomib-lenalidomide-and-dexamethasone-for-people-with-myeloma-fitness#undefined
It seems from your message that your husband is on the maintenance phase, but I don’t see anything about a new added tablet (unless the ixazomib that he was lreviously taking is now in a new format in the maintenance. This has left me a bit confused, but I am only an MM layperson.
Regards
James
Hi,
I was on chemotherapy similar to your mum’s. I had daratumumab instead of cyclophosphamide.
I have not had an SCT for many reasons. One of those reasons is simply that chemo has improved so much now that there is little to gain further from having an SCT. This is according to my consultant who is an authority on MM. I have also read research papers (my background is in science – but not medicine) which also indicate this.
I went into remission about a year ago, and am taking maintenance chemo.
Please do not worry about your mum not having an SCT. Whilst I obviously have no idea as to the specific reason, your mum may well have extensive remission without it.
Regards
Rabbit
Hi Grandmat, welcome to this forum.
Could you please more information about the clinical trial that your husband has been on? Many of us are interested in possible future treatments.
A lot of us MM patients, whether or not on a clinical trial, don’t have a break as even if/when in remission, we may be on maintenance chemotherapy. This may mean lower and/or less frequent doses, but it helps to delay the MM from coming back.
Regards
Rabbit
Hi,
I will give the best answer that I can on this, but must emphasise that I am a layman with MM, not a professional.
Although paraproteins are a classic indicator of MM, an unmeasureably low paraprotein level could still be consistent with a level of cancer cells that could be further reduced.
There are different kinds of MM. For example, mine is kappa light chain MM.
During chemo treatment (which started in January 2023), my paraproteins went down to immeasurable levels in early March 2023 but my kappa light chains were still continuing to go down before stabilising in late March 2023 (one cycle of 3 weeks later). Therefore it took that extra cycle for the cancer cells to go down to negligible levels (people are supposed to have kappa light chains so mine have stabilised at 25 to 30 from a level of over 3,000 when I was diagnosed).
Therefore, I suggest getting info on your husband’s MM type (if you don’t know it already), and how the blood test reading for that type compares to a normal level. Paraprotein levels are not that sensitive a test.
Regards
Rabbit
Hi Nick,
I think my experiences come in the ‘bad’ category.
The first time I had Zometa, I was fine for 2 days, then as I parked to go to the gym, I felt all energy drain from my body in an instant. I turned around and went home to bed.
Since then, I either get this loss of energy starting 2 or 3 days after Zometa and going on for around 2 days, or I get the ‘flu-like’ symptoms which my nurse warned me about (but worse than they implied).
Let’s just say that I was originally due to get Zometa every 28 days. After I pushed back on this (because the side effects were distinctly unpleasant), this changed to every 3 months (or to be pedantic, every 3 x 28 = 84 days).
At least I know to anticipate feeling horrible then, so I plan accordingly. My next Zometa is due next week, so I am not planning anything more strenuous than reading and watching TV a couple of days later, as I probably won’t feel able to do much.
Hi cb1sara,
When I started chemotherapy, the advice that I got on weight changes was to just eat according to appetite unless there was a lot of weight loss (then the high calorie milkshakes that I mention above can be prescribed).
My impression of the situation is that:
– Dexamethosone often increases appetite and therefore weight.
– Patients often don’t exercise as much as before, also increasing weight, but
– The chemo can cause nausea and a loss of appetite, and so weight loss
– An SCT can cause very little appetite for a long time, so a lot of weight loss.
In short, weight can often bounce up and down quite a bit over time. As you say that you are coming towards your SCT, putting on a few pounds at this stage sounds like good situation to be in.
My personal opinion is that weight is not important compared to everything else you and your body are going through. You’ll get through this!
Rabbit
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 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 cjleeds,
You mentioned that you have lost over a stone in weight.
I don’t know if this will provide any assurance, but in terms of weight:
– From the date of diagnosis, I lost about 15kg = 33 pounds in weight. (I had also lost weight before diagnosis, but wasn’t tracking it).
– Starting a month or two into remission, I started having what I call ‘hunger attacks’. I frequently have two breakfasts or lunches, as my body sometimes just demands that I have high calorie food. So far I have put on about 5kg = 11 pounds.
– High calorie milkshakes can be prescribed. They come in powdered form, in sachets: just add milk.
Regards
Rabbit
PS To anyone unfamiliar with the abbreviations:
SCT = stem call transplant
D = Daratumumab = Darzalex
R = Lenalidomide = Revlimid
d = dexamethasone
