[jamescollingseParticipant]

Lenalidomide is a prescription drug that’s often part of treating some blood issues. If you or someone close to you is starting this, stick to the doctor’s instructions. Regular checkups let them see how it’s going and change the dose if they need to. Talk openly about any pain or weird stuff you notice, and don’t mess with the dose yourself. Having support from friends or family can make going through treatment way easier.

[ritzygirlParticipant]

Hi everyone, just a few questions I’m 57 female and I was diagnosed with Myeloma & started January 2025 four months of chemo DVdt and a stem cell in July . At the end of last year had some back pain however I knew I had MGUS about five years ago , so Drs were on it quickly . I had radiotherapy on my T8 just one blast. I am due to take Lenalidomide in January and Apixaban twice a day. I just wanted to know who is on it & thosenot taking any maintenance drugs because I’ve heard of some living way beyond 5 & some of 10 years without ; it’s so difficult to decide what to do . My concern is I feel really well. My back is fine. I get the old niggle now and again but I’m concerned about any side-effects with the maintenance drugs, as all my organs , bloods are good at present. Just wondering whether I should hold out and when it kicks off then there may be another option , another drug available etc
Just to reassure others going through this process yes it’s a marathon but keep your glass half full the QE in Birmingham were right by my side I only spent 10 days in hospital having my stem cell , touch wood no infections. I have absolutely bags of energy and having yet slept once in the day but hang to o & crash about 10.30pm & luckily sleep recharge my battery pack. I get do get a bit of dry eye / dry mouth.I think my best medication has been walking up to approx 10-14 miles a week. so I highly recommend even if it’s just a few miles a week; luckily my boys play golf so I walked with them lots especially over the summer. I did go out a few weeks after sct for breakfast or a coffee obviously being very careful & went for the quieter periods explained to them about making sure things cooked properly etc because of my immunity. I now lead a normal life , well perhaps not nightclubing ! I miss a runny egg though .I’m planing on going abroad in spring. I’m not yet back at the gym. I’m going to wait until next spring until I have all my childhood vaccinations in January. I just have to stay up off the naughty step now & not get the flu or Covid.
Thank you for reading my story sending smiles & best wishes to you go . Keep strong you warriors

[rabbitParticipant]

Hi ritzygirl.

You are doing really well, especially in terms of energy and exercise – 10 to 14 miles of walking is a lot!

You asked about the benefits and side effects of Lenalidomide.

You are right that people can live for some years without lenalidomide – in fact staying in remission for some years, followed by other treatments.

However, lenalidomide would change the probabilities in your favour. After all, that’s why it’s being offered to you! You could ask your consultant for the median times in remission for patients with and without lenalidomide, to quantify it.

Now on the side effects. These vary a lot. You have had thalidomide, and lenalidomide is similar. All that I can say is that you can try it. If you do get side effects that are too unpleasant to continue with, reducing the dose or stopping it are always options. Then you are no worse off.

My own experience was that I went on lenalidomide on going into remission. Meanwhile (as you emphasise exercise), I got back in the gym and rebuilt my strength and cardio fitness. My immunity wasn’t so bad because I haven’t had an SCT. I stayed on Lenalidomide for about 18 months, but I was developing diarrhoea and fatigue (for some people the side effects gets worse over time), and my platelet count went too low. The lenalidomide dose was therefore reduced for a few months. I felt much better but my platelets weren’t responding well, so it was stopped altogether. Still going strong without (still in remission, still weight training, cycling like a lunatic in the gym, and walking a lot)

Just my views and experiences, but I
hope that this helps.

Regards
Rabbit

[rebeccaRParticipant]

Hi ritzygirl

This Xmas I will be 12 years post Sct with no maintenance and 13 years since diagnosis. I was a fit 51 yr old diagnosed at crisis point (48 hrs frm dying) with MM and severe kidney damage. I learned later that no-one expected me to leave the hospital but guess being younger is a great advantage. I have high risk genetics but due to kidney damage was only on velcade (kidney friendly) and dex for a while. Due to genetics I had SCT – which appeared very risky in case the process wiped out my kidneys. Maintenance was then available only on trials and my kidney function did not meet the criteria. It took 5 years for my kidneys to slowly improve to ave 40 gfr ( was told they cannot improve btw but other MMrs told me otherwise). Myeloma is very individual so the stats re maintenance or anything else may not be the stats you personally follow. If I had maintenance this post would be saying I had maintenance and am still drug free 12 years later …but I didn’t! I was younger, I am sporty and play lots of tennis, walk a lot, gym etc have a positive mindset and I personally think the exercise has helped me and my MM – obviously I don’t know as there are no stats for it. I have a low immune system (tho don’t suffer frm it generally) so maintenance drugs would have dragged down my immunity and more importantly my kidney function so, for me, maintenance would have been detrimental to QOL. I was advised, back in the day, SCT was too risky for me and had to go to another hospital who agreed to do it because of my high risk genetics. I was advised it would hopefully give me 18 months on average and if very lucky maybe 7 years. The consultant said he sat there like a “gambling” man – some they thought would do well and didn’t and vice versa such is the individuality of myeloma. My gut feeling led me to have the SCT and my “gut” instinct will determine, in the future, my next treatment steps.My myeloma is not yours and yours is not the “average”. Trust your instincts in all consults is my take on things now.
Rebecca

[blobgobParticipant]

Rityzgirl,

There are already many other maintenance treatments other than Lenalidomide, but I believe it currently remains one of the main 1st line of treatments in the NHS.

I’ve been on it for almost 4 years now, with no major side effects. My Myeloma Consultant says he plans to move me off it when I hit 70 in 13 months time. For now, I have no reason NOT to go along with his judgement. I do read as much research as I can online, and there is definitely other ways to treat this disease, but in the UK the list is not as large as in the US.

[Author]

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