Hi Loubella,
Thank you for sharing your and your husband’s experiences.
You said that “We also felt there was little information about the prognosis without the transplant but I am guessing that is because in the UK, there is not much research data available as most patients have the treatment.”
There have been lots of clinical trials testing the effectiveness of different treatments. Although some of these trials do involve UK patients, they are done all over the world and the results shared globally. There is therefore plenty of data (it’s a bit of a mishmash of inconsistent trials but that’s a different matter).
I think that the reason why UK myeloma patients get nudged towards DVTd plus stem cell transplant as the first line of treatment is that it is the NHS standard. Although the NHS occasionally gets called “the UK national religion”, it can be somewhat dogmatic in its approach.
Regards
Rabbit
Hi psg32 and welcome to the forum.
I went through treatment in the first half of 2023. However, I didn’t have a stem cell transplant.
The short reason why was that, although young enough and superficially fit enough to have one, I have a dodgy heart and a transplant would have put an extra strain on my heart.
However, I did my reading up and discussed it with the consultant. I could have pushed for a transplant but didn’t. Stem cell transplants were originally done when other treatments were relatively ineffective: we are now in an era where patients and doctors are almost spoilt for choice: bispecific antibodies (such as elranatamab, teclistamab and talquetamab), belantamab, celmods, CAR-T (though the last two are not approved yet in the UK)…
The DETERMINATION clinical trial showed that the advantage of a transplant is not so much.
[Now quoting Chat-GPT]
‘There is evidence that some U.S. myeloma patients are delaying or avoiding upfront autologous stem cell transplant (ASCT) more often than in the past, though transplant is still considered a standard option for eligible patients.
Several trends are driving this:
– Highly effective induction regimens (especially daratumumab- and RVd-based combinations)
– Greater use of MRD-guided strategies
The [DETERMINATION] results showing no overall-survival advantage for early transplant versus delayed transplant
– Expanding use of CAR-T and bispecific antibodies in relapsed disease
– Older average age at diagnosis.’
However, in both the US and the UK, transplants are still part of the official first line standard treatment.
Personally, my priority too was quality of life. My response to treatment was ‘very excellent’, and within weeks of going into remission I was off on holiday (though with fatigue and a weakish immune system). I am still in remission.
I am not trying to sell anything to you: simply giving my experience, together with information.
By the way, my stem cells were harvested: I could always have a transplant in some time to come.
Regards
Rabbit
Hi najmah,
I have been trying to keep quiet, as I might have been taking over this forum 😀.
However, you asked me a couple of questions, so here goes…
So I just wanted to ask Rabbit how he felt getting back into exercise and was 6 months the kind of benchmark time that you felt it was right? Did you build it up gradually?
It felt good being back in the gym, psychologically. Up until then, I had been a regular since 2004 (so 19 years up to 2023), give or take a couple of Covid lockdowns. I even went in on the first day lockdowns ended: 12th April 2021!
Although I hadn’t been in there for nearly 6 months, having stopped a couple of weeks into treatment due to fatigue, I hadn’t suspended my membership. It was a matter of principle for me to be able to walk in whenever I wanted.
However, I had gone from being very strong for my age to pretty weak. I had little stamina, cardio fitness or muscle! Physically, it was hell. I started with very light weights and a low cycling gear, but I was still in and out in a matter of minutes. My legs looked so spindly when I restarted squats that they looked like matchsticks. Likewise, my arms were (my wife’s description) ropey.
It took one hell of a lot of effort and willpower to keep doing the extra reps and increase the weights, as well as to keep increasing the gears and time cycling.
Therefore it was necessarily gradual. As for the 6 months, that was simply how long it took. True, I was enjoying remission during that time by going on holidays, so maybe it could have been done in 5 months without trips. However, after spending the first half of 2023 either getting treatment or at home, I was pretty desperate to get on with life 😀
So apart from walking and cycling have you any advice on what I should start with on going back to the gym?
There is a saying that the exercise that is best for you is the exercise that you actually do! Prioritise what you like and are used to. The memory and muscle memory will help enormously.
I must give caveats: these are only my experiences, it may go differently for you. Also, I suggest getting approval from your consultant and/or a physiotherapist before doing anything that could put a strain on your bones.
Regards
Rabbit
Hi Beaming,
I am cheating by copying and posting from another post that I did a few minutes ago 😀
You asked about why I didn’t have a transplant. It wasn’t my age: I am still in my fifties, which is plenty young enough. A couple of years before, I was diagnosed with a dodgy heart. It’s genetic, I have had a healthy lifestyle for decades. My cardiologist and my haemotologist discussed me and agreed that the transplant would put strain on my heart.
In addition, as chemotherapy has been improving, the advantage of a stem cell transplant are less than it used to be. However, it is still the standard UK approach.
Regards
James
PS I was still offered a transplant if I had really wanted one. However, after a few months of reading up on medical papers (I am a science geek so used that background to learn a whole new vocabulary 😀) I agreed with the reasoning, risk/reward etc. My stem cells were collected and are on ice somewhere.
Hi Beaming,
I won’t give you false hope, but when I was diagnosed, my prognosis was not great, but I am doing far better than expected. Meanwhile, so many new treatments have been approved and are in development.
If he can maintain as healthy a lifestyle as possible, that can help. However, no pressure in terms of diet or exercise during treatment, as that can be difficult or simply impossible (voice of experience here, even without having had a transplant 😀).
Regards
Rabbit
Hi ap003,
The cycling is very good: non- weightbearing, easy to stop if you get fatigued, and it can be as intense and as long as you want and are able (I would say that after an hour going flat out in the gym earlier today!). I did hear about someone with myeloma who was cycling all around the British coast.
You asked about why I didn’t have a transplant. It wasn’t my age: I am still in my fifties, which is plenty young enough. A couple of years before, I was diagnosed with a dodgy heart. It’s genetic, I have had a healthy lifestyle for decades. My cardiologist and my haemotologist discussed me and agreed that the transplant would put strain on my heart.
In addition, as chemotherapy has been improving, the advantage of a stem cell transplant are less than it used to be. However, it is still the standard UK approach.
Regards
Rabbit
Hi Beaming and welcome to the forum.
Igd myeloma is indeed rare: around 1 to 2 percent of cases.
You may therefore not get many (any?) responses, so I thought it worth sticking my nose in!
A tandem stem cell transplant is unusual. Could you please tell me:
– How old your husband is?
– In what way he is high risk (for example, I have t(4, 14) and +1q chromosomal abnormalities which nake me high risk)?
Regards
Rabbit
Diagnosed 2022, still in remission
Hi ap003 and welcome to the forum.
I have learnt a lot of myeloma jargon since my diagnosis in 2022 but I had never heard of ‘hyperdiploid genetics’! After a quick bit of reading up, it seems to mean that you have extra chromosomes, a subcategory of chromosomal abnormalities (I have different, and more adverse, chromosomal abnormalities).
DVTd plus bone strengthening drug plus ASCT is the norm in the UK for the newly diagnosed.
The side effects of DVTd on people vary hugely. I can give you my experiences, especially as you exercise a lot and I used to (and still do), so I’ll emphasise the impact there.
Before diagnosis: cycling in the gym, heavy resistance training, running, walking. Generally doing a fair bit of exercise 7 days a week.
After treatment started: fatigue hit me hard after a couple of weeks. I stopped going to the gym (out of sheer bloodymindedness I didn’t suspend my membership!). Stopped running too. Forced myself to walk as much as possible, though it was a huge effort. Fatigue also meant that I had a daytime nap almost every day.
After 6 months of treatment (no ASCT), I got back back into the gym, as fatigue was just starting to reduce. I am a very tall man, but even so, losing 16kg – largely muscle – meant that when I restarted it was from a low point in terms of cardio fitness, muscle and stamina.
You say that you ‘exercise’ 4 times a week. I suggest that you get advice if that means resistance training, yoga and/or Pilates, to make sure that your bones can take it (I got the go ahead from a specialist physiotherapist).
It took a lot of willpower and another 6 months, but I got back to where I was on everything except running (my body doesn’t want to know – it doesn’t bother me).
Sorry if that sounds scary, but it’s only one person’s experiences. You are also younger than me and that should help you a lot.
Enjoy your holiday. I recommend the Sagrada Familia, the interior is simply incredible!
Regards
Rabbit
Hi DWT,
Thank you for calling me an inspiration!
A couple of suggestions for making a start.
– As you have an 8 year old, that sounds the perfect age for her to pester you to exercise!
– A smartwatch might help too in terms of tracking how you are getting on. In terms of cost, I haven’t bought a gadget new for years. CEX does good quality smartwatches secondhand (although the choice may be limited).
– Distraction. One advantage of cycling in a gym is that I don’t have to worry about safety. I routinely play music loud and even read as I pedal!
– By all means push yourself hard, but don’t beat yourself up about needing to rest and nap. Although I don’t generally nap these days, my wife and I visited friends of hers; I got tired, asked if I could lie down on their sofa, and slept for a while!
I hope that this helps.
Regards
Rabbit
PS When I mentioned my weight loss and gain, I didn’t mention the context. I am a 6 feet 4 tall man, but even then an 18kg weight loss was a lot.
Hi icsdam,
Although it was at first difficult to disentangle with drug caused which side effect, I came off them one at a time so I think that I can figure it out.
Daratumumab: I am still getting this every 4 weeks (my sole chemo these days). It is a thick liquid which a nurse injects over a few minutes. It caused me semi-diarrhoea for 2 days, but the impact has spread out these days.
Revlimid = Lenalidomide: for a long time, these capsules had no side effects that impacted me day to day except a little fatigue. It did, however, reduce my platelet count which had always been low in the first place. After 2 years from the start of treatment (18 months into remission), my fatigue was getting worse (not unusual with Lenalidomide) and my platelet count was too low, so the dose was reduced for a few months then stopped.
Velcade = Bortezomib. Watch out in terms of what you eat! I wasn’t warned on this, but green tea and vitamin C in particular can stop it from working. If you take them well away from when you are injected, I am told that it avoids that issue. For me Velcade was the one that really caused me fatigue most. I was glad to get off it as soon as remission started.
Dexamethazone. You have probably had it before, but sleeplessness was the biggest issue. Also occasionally an increased appetite. In my case, although this is unusual, it damaged my eyesight. I had cataract surgery which also fixed my shortsightedness – my eyesight is the best that it has been since I was 6!
Not trying to scare you – you’ll get through it!
Regards
Rabbit
Hi Icsdam,
Thanks for the update.
I would also point out that Belantamab is a pretty new treatment, whereas Dara-RVd is well established and many people have had it as a frontline treatment. The advantages there are that healthcare teams are generally well experienced with it and many of us (me included) can tell you our experiences, how side effects were managed etc.
Regards
Rabbit
Hi DWT,
A bit of background first. I had been exercising most days – some might say obsessively – for many years, both cardio and weight training.
When I was having chemo for active myeloma, that stopped as I had no energy, but as soon as I went into remission I was back in the gym.
How long did it take for your fatigue to improve?
Short answer: about 6 months. I had lost about 16kg (I had been far from obese) despite not having a stem cell transplant. As I had been resistance training before, I had been muscly but that had gone and my spindly arms and legs took about the same 6 months to get back to the state and strength that they were before. All that I had was willpower, muscle memory and ‘normal’ memory (I knew what to do). I have since put back on about 11kg, again mostly muscle.
I do walking (for gentle cardio), cycling in the gym (for intense cardio) and resistance training (for strength – although please get advice on this first if you do it to prevent further pain or fractures!). I used to run: my body has been refusing since diagnosis, but I am hoping to persuade it!
Do you still feel it or does it creep up despite your exercising?
I get some fatigue, even though my Lenalidomide was stopped some months ago. However, I do go hard on the exercise (today was an hour with heart rate at around 140bpm plus 8km of walking). I could go easier – and I would if I still had young children (mine have grown up) and use the difference on ‘playing with kids’ exercise!
Regards
Rabbit
Hi DWT,
It was my guess that your fatigue was getting worse and that you were on Lenalidomide.
That was my experience: the side effects of it sometimes get worse over time.
I was going to suggest discussing a reduction in the dose, but you have done that, and 5mg is generally the lowest dose.
Also, as you went off Lenalidomide altogether for 6 months, it doesn’t sound as though that helped.
The other suggestion is lifestyle oriented: exefcise. I know that exercise while already fatigued is damned hard – I have done it myself, and it took all my willpower.
This is really where ‘pushing through it’ counts. This factsheet may help https://www.myeloma.org.uk/library/exercises-for-myeloma-patients-infosheet/
Despite what it says, I suggest that you go hard on cardio (except when there is pain).
There is a lot of evidence that exercise reduces fatigue, as well as improving the prognosis.
Regards
Rabbit
Hi DWT,
Sorry, I only just say your post.
Pain: you are entitled to get a referral to another consultant. A haematologist/oncologist who listens and acts is invaluable. It sounds as though that is not your situation, so maybe change consultant altogether. In short, kick up a fuss!
Fatigue: what maintenance are you on? Is the fatigue getting worse? I have a couple of thoughts based on experience, but first I want to check whether they are relevant.
Regards
Rabbit
rabbit.
Hi.
An itchy skin – including/especially an itchy scalp – is sometimes a Lenalidomide side effect.
It is not something that I experienced, but if you go to the Home page of this forum and search for “Itch”, it has been mentioned a few times.
In terms of what seems to have been effective for any itchy scalp, I have had a look to save time and effort:
– Pam said “Now taking antihistamines which have helped.”
– Shropshiremum said “I take loratadine [an antihisamine], and it definitely helps”
– Lilib said “I think the hospital pharmacy gave him some creams and shampoo (sorry, I cannot remember the names)”. You could ask you doctor or nurse?
. Maidmarion said “I also bought him some Aveeno sensitive shampoo, which doesn’t contain parabens”.
I hope that this is some help.
Regards
Rabbit
