[jbalParticipant]

Husband is 8 months post SCT. Tried the 10mg Lenalidamide maintenance at 100 days and only managed 10 days as had what appeared to be an allergic skin reaction which settled quickly once he came off the meds.

We gingerly re-introduced it 2 and a half weeks ago alongside an antihistamine (Certerizine Hydrochloride). First week he took the Lenalidamide every other day, 2nd week he started taking 10mg everyday. First week he was absolutely fine, skin on his face was dry, but moisturising daily with an Aveeno gel. This is the 3rd week and he is really struggling. Face still really dry but manageable as moisturising several times a day to stop the skin peeling and getting sore, no rash or itch but just generally feels rubbish in himself. He’s tired and lethargic which is such a shame because the last few weeks he’s looked amazing and felt really good and had been really active everyday.

It’s telly disheartening to see him not looking himself and reminiscent of the early days on Induction chemo!!

Can’t wait until Sunday as next week is a week off and hoping to see an improvement.

Anybody else struggled with the maintenance dose? would love to hear if any early side effects resolved in time or if people have had success with different doses?

Thank you
Jane

[mulberryParticipant]

Hi Jane, the purpose of maintenance is to extend the period of feeling good, as healthy as possible, and able to enjoy life. If your husband isn’t, the maintenance isn’t achieving its purpose, and as a patient I would have a conversation with the doctor about whether it is better to do without maintenance (as virtually all patients who had SCT before early 2021 do) or whether it’s worth persevering for a while to see if his body learns to tolerate it.
I was one of the patients who was desperate to try lenalidomide maintenance, which wasn’t available on NHS when I needed it, & I have argued that everyone should have access to it after SCT. I went to what seemed significant lengths to import it for myself. But it isn’t side effect free, and I wouldn’t totally compromise my feeling of well being to take it.
I think it’s become clear that lenalidomide maintenance is not for everyone.
In USA myeloma patients have different maintenance options to choose from, this is the direction we need NICE & NHS protocols to take.
Quality of life really is important & even without lenalidomide maintenance the future is looking more optimistic for us with Daratumumab approved, and other drugs likely to join the arsenal soon.
I hope your husband does come to tolerate lenalidomide – it might need lowering the dose to 5mg or even 2.5 mg daily -but try not to get demoralised if lenalidomide just isn’t the drug for him.
Jane

[jbalParticipant]

Thank you Jane
Yes I agree completely. I think there is a discussion to be had about dosage when he is next reviewed.
Did you experience any side effects? And if so did they resolve over time or not?

Jane

[tony642Moderator]

Hi Jbal,

I am one of the forum volunteers. Have you asked why your husband needs to be on a maintenance dose? I had a stem cell transplant over 2 years ago and am not on any from of mainteneance. I know each patient is different, but if it is affecting his life, why not ask about the reason for it, or is there an alternative drug they can use. Don`t just accept what they give him without questioning it if you are concerned. They can only act in what they think is his best interest, if it is not working out for him then you need to let them know so they can at least look at trying something else.

Regards, Tony

[mulberryParticipant]

Hi Jane, you asked about my side effects from lenalidomide. The most significant one was neutropenia, which took me by surprise as I had tolerated a much higher dose during induction.
My maintenance dose was reduced to 5mg daily 21 days on, 7 off. I get constipation on this dosage and some cramping, but nothing that is difficult to tolerate.
I hope your husband can have a frank discussion with his doctor.
Best wishes, Jane.

[kh0305Moderator]

Hi Jane,
My dad was on lenalidomide maintenance following his SCT as part of a trial and luckily had no significant side effects. However, he didn’t get on so well with daratamumab which others tolerate better and after a couple of months and discussions he came off it and is much better in himself as a result, so it really is very individual. I’d definitely echo what others have said about speaking with the consultant as quality of life is so important.
Good luck! xx

[jbalParticipant]

Thank you for your responses. Blood tests tomorrow and review next week !!

[shropshiremumParticipant]

Hi Jane

I’m on lenalidamide, 7.5mg daily, and I take antihistamines daily, as I experienced hot, itchy skin when I first started to take it.

However, my main problem is the neutropenia. I’ve now got my third bad cold since my son returned to nursery in January. I kept him at home for over a year whilst I was having treatment, but as he starts school in September, it was really important for him to have some time with children his own age, so he went back at the start of the year.

The first two colds lasted about six weeks each, and were accompanied by ear infections. I had a couple of weeks respite in between, but the second one put me in hospital for three days over the Easter holiday. It’s miserable, because I’m now panicking that I’ll get a temperature, and end up in hospital again.

My partner’s in the Navy, and sorting emergency childcare is not straightforward at all. I’m really hoping that I start to build up some immunity, as I don’t want to be battling bugs all the time!

I hope your husband finds a way to manage the side effects. Maybe he could try a different antihistamine? I take loratadine, and it definitely helps.

Best wishes

Susan

[jbalParticipant]

Hi Susan
Gosh, I’m amazed at how different peoples experiences with Lenalidamide are. Thankfully Hubbys skin appears to have calmed down a bit and we may try next cycle without the antihistamines.

Low white blood counts seems to be common problem so we’ll see what todays bloods show when they are reviewed next week!!

Thank you for responding and take care
Jane

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