[myeloma2016Participant]

hi every one
I’m now 9 months post (SCT). I have been on lenalidomide 10 mg. So far everything seems ok.
I was told that ill be on lenalidomide as maintenance therapy for only one year, and second year they will change it to thalidomide. I have not ask further clarification yet as I have three more months to go with lenalidomide.
Any one has been on thalidomide after SCT? and how has been the experience of taking the medication?

[mulberryParticipant]

Hi, I’ve asked a few people about this but I haven’t heard of anyone else who has been told this. Lenalidomide is a comparatively easy drug to tolerate, and is 8% more effective than thalidomide. Personally I would not want to change. (I am 2years into lenalidomide maintenance,)

[ukejParticipant]

I had my SCT in March and will be starting on 10mg Lenalidomide next week. I have recovered well post transplant so have been feeling a bit apprehensive about starting on the Lenalidomide. My consultant told me that it would be an ongoing treatment .There was no mention of it ever being changed. It is reassuring to know that the drug is well tolerated. Thank you. I am interested to know the experiences of others who are on Lenalidomide.

[ptlelecParticipant]

The Lanalidomide debate goes on!
I too had my SCT in March and am now in remission, all blood counts are fine and the paraprotein levels are barely detectable.
At the end of June my consultant advised me to go onto Revlimid/Lanalidomide which I did. Since then I became more fatigued, so last week we decided to come off of the drug for a month to see how or if I improve. I see that Mulberry has been on this for two years, is that after the first or second SCT?
This period has also coincided with me returning to work in a phased manor, which is great, but the fatigue appears to still be effecting me and is ever so frustrating.
Has anyone else had this issue and does it get any better?
I still have minor issues with neuropathy but the fatigue issue is the one that is causing me most concern and playing on my mind and beginning to affect my confidence and possible well being!
It does not help when I am affected by the irritating cold bug that has been doing the rounds, but so far so good no COVID.
Wishing everyone the best!

[mulberryParticipant]

I’m on lenalidomide as maintenance after first SCT. Having read the UK myeloma XI trial results I was very keen to have maintenance, but could only tolerate a 5mg dose, (due to low WBC counts) which may have had the consequence of lessening the potential for side effects such as fatigue?

[ukejParticipant]

I recovered well from my sct in March but in July I developed Shingles which was most unpleasant and knocked my energy levels right back. Apparently it is advisable to stay on Aciclovir in order to prevent viruses such as shingles getting a hold.
I started on 10mg lenalidomide in September and was fine for the first month, but then my appetite started to wane. I am 2 weeks into my 3rd cycle and have had to stop taking it as I have no appetite at all, my heartrate has increased and I am breathless at the slightest effort. Before lenalidomide, I was enjoying long walks and had started swimming again. I am waiting for a call from my consultant to see if he has any suggestions but,for me, quality of life is a priority.
Has anyone else experienced these problems and are there any alternatives to lenalidomide?

[arobParticipant]

Ukej, hi – one comment from you was that you went for long walks. I can barely walk at the moment as I have compression fractures in my spine. Do your bones get stronger after stem cell treatment as I cannot imagine walking anywhere without an aid. Before I was diagnosed with multiple myeloma I used to enjoy walking many miles with my daughter and her two springer spaniels. Will I be ever able to go for walks again?

[lilibParticipant]

Hi arob – I’m wondering what stage you are at with your Myeloma treatment? My husband was diagnosed in July, and at that point he was unable to walk or drive because of deterioration of the spine. Since then, his Consultant arranged a consultation with an Orthopaedic surgeon because there is a treatment which can be suitable, which involves inserting some kind of ‘concrete’ into the spine, and he has that option in reserve. However, he has also started monthly infusions of Zometa, which also builds up the bone, and after 2 infusions (the third will be today), he is back to short walks (a mile is the longest achieved so far) and driving the car. He is still on induction treatment, so not likely to have SCT until next year.

In summary, I think perhaps you need to ask some questions of your team about ways to improve your mobility. You may possibly not have been given enough information about what is available.

I wish you all the best.

• This reply was modified 3 years ago by  lilib.

[lilibParticipant]

I meant ‘cement’, rather than concrete!

[mulberryParticipant]

Aron, take heart from the leader of my local support group who was wheelchair bound for the first 6 months after diagnosis. But since then, for the past 17 years!, she has been very active. She belongs to a walking group, digs her own allotment, goes on active holidays multiple times a year…. These things are clearly possible. I haven’t had spinal lesions so far so can’t talk from personal experience, but other members of our local support group definitely find mobility gets easier, even if they loose a few inches.

[ottoParticipant]

Hi,

I am 49, diagnosed in 2018, SCT with complications of phnamonia, colitis and sepsis, twice Oct 2018. It has taken two years to feel strong, and finally this year after the pandemic, i felt safe enough to go to the gym for my swimming. I found swimming in 2020 and 2021 in an outside pool did wonders to my recoding, strength in myself.

I was lucky when diagnosed it had not gotten to my bones.

In 2019 I started Thalidomide as a maintenance, and three years on I’m still tolerating it well, and remission. When it comes to tiredness, the early days, it was tiering. But with fitness, walks etc it has really helped with all of that. I am not considering coming off the maintenance and have been asking around for advise about this. My insurance is going up to £700 a month and I can quite afford anymore..

Originally my specialist said to be on for at least 2 years. But now I’m 3 years in he says, if I came off and relapse, we will have to start from scratch again with phase one. Its a big decision.

@myeloma2016 – are you on Thalidomide now and how are you tolerating it?

My specialist did say, if I found out I had myeloma now, he would put me on a different regime and then lenalidomide as a maintenance instead…

Best
Kim

[mulberryParticipant]

Hi Kim, I’ve responded to your question about maintenance on the thread you started.

[Author]

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