[blobgobParticipant]

Hi Lynn,

Welcome to the forums!

I would be saying the “dreaded lenalidomide” rather than the steroids, as I coped much better when on the steroids as part of my initial treatment.

I’m on lenalidomide post stem cell transplant (2022) now, as my long term maintenance therapy. It was not available on the NHS before I had my ASCT. Most days of the 28 day cycle I’m fine, but there are a few days each month where I feel tired, and don’t like to wander to far from the loo! Known symptoms of Lenalidomide, but perhaps you will be luckier and it won’t bother you.

You don’t actually say what form of Myeloma you live with?

Best wishes,
Derek

[blobgobParticipant]

This was certainly the case when I was having my revaccination doses post ASCT in 2022.

I checked my NHS app vaccination records to be sure and I can see no mention of being given the MMR vaccine. I also recall I was told I was not able to have the chickenpox/singles vaccine for the same reasons ie. it’s a live virus.

[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.

[blobgobParticipant]

I live with MM and itchy feet aka peripheral neuropathy! The itchy feet are a side effect of the treatment I was on. I don’t take anything to alleviate the systems as I don’t find it too uncomfortable.

Are you on any myeloma treatments?

[blobgobParticipant]

A bit late to reply to Eltry now, but I’ve only just seen this thread!

Re driving while on my initial chemo, the simple answer is I didn’t. My wife had to drive me to the hospital and back as I was too weak to drive. It was a few more months before I was back behind the wheel.

Eltry, did you go ahead with your treatment? I would say that you really should go ahead with the initial chemo, MM will get you in the end if you don’t. There are however treatment choices you can make further down the line.

[blobgobParticipant]

Hi Les,

I suffer from this as well, although I suspect not as badly as you do.

I keep my hair short, which seems to help, but I’ve not been brave enough to try shaving my head!!! 😉

I also use a tea shampoo a few times a week, which also seems to help, but doesn’t completely remove the itch.

• This reply was modified 3 months, 4 weeks ago by  blobgob.

[blobgobParticipant]

As your husband has been diagnosed with MM, I would have thought he would get a Covid jab free on the NHS?

I hope the rest of this chemo goes well.

[blobgobParticipant]

Thanks for sharing this Stanley.

[blobgobParticipant]

I had an ASCT in 2021 during Covid. So no problem with visitors as no one was allowed any!

I was in hospital for about 2 weeks. The first of which was pretty horrible due to the initial treatment. The second week was waiting until my platelet and neutrophil counts got up above a certain level. They infused a couple of bags of platelets to help me along!

I could not have managed at home for the next month without the full time help of my wife, who took time off work to care for me. I bought a mobility chair which I slept in for the first few weeks, as it made it much easier to get up and down. I needed to use support rails to get up when in bed.

But in the end it was all worth it. I was back to mostly normal in around 3 months.

[blobgobParticipant]

Replying to Lynn,

I too had a skin reaction after a period on Lenalidomide and came off it for a few weeks.

I restarted on the same dose, 10mg daily for 3 weeks with a week off, and have had no similar reaction since. Click on my profile name for more details.

Derek

[blobgobParticipant]

Hi Dennis,

The doctors have the advantage of seeing the charts of your long term Hb and WBC results, and if they are falling then this indeed a cause for concern.

I too recently had another bone marrow biopsy as my neutrophils are down a bit. As it is a pretty painless outpatient process taking under and hour, why don’t you just go ahead with this and then you can discuss future options with your consultant?

Regards,
Derek

[blobgobParticipant]

Sainsbury’s sell Lindt Excellence Supreme Dark which has a big label on the front saying 90% Cocoa.

I’ve got a bar but not tried it yet, am starting off with the Mint Intense bar!

[blobgobParticipant]

Do you know how long the effect lasts for?

[blobgobParticipant]

@lablady

I went off coffee for 9 months during my initial treatment and then Stem Cell Transplant. Both coffee and beer were just not of interest to me! And I was a regular coffee drinker before that.

But gradually the coffee taste came back to me and I now drink it regularly, with the occasional tea!

[blobgobParticipant]

Hi Rabbit,

I’ll be reading, so please post your output on Healthy eating!

Regards,
Derek

[Author]

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