[rabbitParticipant]

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

[rabbitParticipant]

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

[rabbitParticipant]

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

[rabbitParticipant]

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.

[rabbitParticipant]

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

[rabbitParticipant]

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

[rabbitParticipant]

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

[rabbitParticipant]

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

[rabbitParticipant]

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

• This reply was modified 1 month ago by  rabbit.

[rabbitParticipant]

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

[rabbitParticipant]

I’m glad for you that the news is (relatively) good!

All the best.

Regards
Rabbit

[rabbitParticipant]

Hi,

Being a geek, I read and watch a lot of material on myeloma. This is a video on Belantamab which I thought might be of interest.
https://multiplemyelomahub.com/medical-information/the-patient-experience-treatment-with-bcma-directed-therapies-in-relapsed-mm

Regards
Rabbit

[rabbitParticipant]

I well understand the urge to make the most of life!

The villa plan sounds good. I can be more specific given that info:
– Infection risk from people: Covid in 2020/21 showed that infection risk during flights is low. Air filtration is a key part of that. There is risk from queuing up at check in, at the gates etc, though.
– Infection risk from food: you and your husband have probably been briefed heavily on this, but just in case: caution (at best) is recommended eating out with much raw food, such as salad and sushi. My dietitian warned me on a few other things (such as raw meat and unpasteurised dairy) but most people don’t come across those much anyway.

Regards
Rabbit

[rabbitParticipant]

Hi and thanks for the update. I am delighted that your husband is MRD negative.

An update for an update: despite being high risk, according to my blood test yesterday I am still in remission (my MRD status has never been tested – maybe it’s expensive to do). Still going on holidays and enjoying life.

I hate to sound a note of caution on holiday plans, but how strong is your husband’s immune system yet?

Two risks:
– Infection from other people. I have been told that neutrophils levels being low – especially below 1.0 – mean that the patient should keep away from crowds (though face masks can help).
– Infection from food. I have come home from holidays a couple of times with stomach bugs. Hygiene standards are critical here. My worst experience was Morocco.

All the best to you and your husband.

Regards
Rabbit

[rabbitParticipant]

Hi icsdam,

That sounds like a difficult choice.

Just trying to explore all the options: what about elranatamab, teclistamab or talquetamab? Isatuximab/Lenalidomide/Bortezomib/Dexamethazone (it’s a first line treatment now, so second line should be possible)?

Regards
Rabbit

[Author]

Posts