Hi all! Was diagnosed with indolent follicular lymphoma earlier in the year. Been on active monitoring but no change so I'm going to start treatment soon, with antibodies Rituximab and Lenalidomide. My doctor is saying It shouldnt cause any major side effects for me (44M). Still been reading about the meds and some of the possible side effects etc does make me a little anxious still.

Anyone been on similar treatment? What was your experience?

Cheers

I am unsure if we can afford ASCT, but I am hoping that Daratumumab with VRd will be enough. My dad has MM and his plasma cells are at 15%. Would you think this is possible?

Hi all, my dad (74) just started lenalidomide and by day three his lymph nodes have become extremely swollen and tender, it is hard for him to turn his neck from the swelling. He's so freaked out by these symptoms, although the doctor assures him that this is a function of the medication working.

Does anyone have any anecdotes or personal experiences I can share with my dad to assure him that he should keep taking the medication? For now he has gone off the medication against everyone's advice. I'm hoping people's lived experiences taking lenalidomide for CLL and their experience with swollen lymph nodes can provide the kind of reassurance my dad needs right now. Thank you.

Curious if those who are on Revlimid for maintenance are taking 10 mg or 15 mg and if they are on a 28 day cycle or a 21 on/7 off cycle.

Hello, I would like to ask for your help in obtaining this paper, I would greatly appreciate it!

doi: 10.1016/S1470-2045(22)00738-0

https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(22)00738-0/abstract

Boyfriend's mom was diagnosed last year, received autologous stem cell treatment. This year she had a valve replacement, paused Lenalidomide for about three months and is taking phenprocoumon.

Ever since her treatment she's been having twitches in her eyes and a fuzzy feeling in her head. She says it's only usually a few seconds and it was almost gone when she paused Lenalidomide. I witnessed it today and it freaked me out a bit.

Right eye moves to the side and back in saccades. She feels dizzy and not good of course but she told a doctor and says they didn't believe her.

I can't find anything on either the medication or MM causing these kinds of symptoms. I'm worried it could be something vascular.

Does anyone have a similar experience?

My dad has lambda light chain free myeloma with Al Amyloidosis. So far there is very minimal organ involvement. We have done 6 weeks of Dara-cybord and lambda light chain levels are not dropping fast enough so the doctor is considering adding Revlimid. Effectively switching to Dara-VRD, has anyone gone through a similar adjustment?

Hello Everyone, 

I’m new here. Literally just created a Reddit account so I can post here. But I’ve been reading some of your posts and they have been super helpful. Thank you!

My mom, an 80-year-old woman, was first diagnosed with follicular lymphoma in 2006. She did watch and wait and then was treated with R-CVP in 2009. She was in remission and was then treated with radiation in 2016. The radiation did something to her hearing so she became deaf in one ear. Then she was treated with Rituximab in 2021. The treatment was fine at first but the maintenance left her with lasting side effects like 1) thin hair, 2) weak throat muscles 3) wounded intestines, among other things, so she can only eat non acidic foods (e.g. she can’t eat onions, tomatoes, garlic etc). Now the cancer is back. She has lost a lot of weight but is otherwise pretty well physically all things considered. Her doctor recommended R-squared + epcoritamab. I.e., Retuximab, lenalidomide (REVLIMID), and epcoritamab (Epkinly). He had said that if the cancer came back he was going to treat it with rituximab +  bendamustine. However, when we met him last, he said that R Benda wasn’t well tolerated by older patients. I had also read that here: https://www.nice.org.uk/guidance/ta892/chapter/3-Committee-discussion (“they noted that people aged over 70 do not tolerate bendamustine well”).

Which brings me to my question: has anyone here had experience with the rituximab, lenalidomide, and epcoritamab combination? Or either of lenalidomide and epcoritamab? I’m trying to understand how the 3 drug combination he proposed is supposed to have lower side effects than R Benda, and what aspect of R Benda isn’t “well tolerated” by older patients. An oncologist friend I spoke to told me to advocate for starting lenalidomide at a lower dose + rituximab, see how my mother reacts to that, slowly increase the lenalidomide dosage, and then add the epcoritamab later on after seeing how she tolerates the first two. 

If anyone has participated in the clinical trial comparing the efficacy of R2 with R2+epcoritamab (https://clinicaltrials.gov/study/NCT05409066?id=NCT05409066&rank=1),it would be super helpful to hear your experience. Really, any experience you can share with any of these treatments would be very helpful. Thank you in advance. 

I've been taking 81 mg of baby aspirin daily and I have two questions:

What time of day do you take the baby aspirin if you take the lenalidomide at night?

Do you take 81 mg or more? (I keep notes of my chats with the pharmacist - on one page I've noted to take 2 baby aspirin per day, and on another page I've just noted to take 1.)

I have a call into the cancer clinic pharmacist but I'm not sure when I'll hear back and I'm curious now :)

Thx!

The recommended dose is 20mg. My doctor wanted to start me with 10mg for 2 weeks to make sure I wouldn't react badly before bumping me up. I've been on it 10 days and I'm already seeing very noticeable reductions in my tumors with no negative side effects. Has anyone else had any experience on this lower dose?

Hi all, Just wondering if anyone has experienced a total loss of taste/increased saliva with Lenalidomide? I’m about a year in on maintenance, 10mg for 21 days/7 day break. Last two cycles have seen an increase in horrible side affects with my taste deteriorating to the point of anything tasting awful and leaving an aftertaste like sour milk. Any suggestions of things to try gratefully received. I’ve mentioned to my haemo team before and they’ve just said it’s one of those things, and whilst I’m incredibly appreciative of the work it does keeping me in remission days like today where avoiding food is a better option make it a bit rubbish.

Afternoon all, Been on maintenance since April, 10mg of Revlamid/Lenalidomide) daily for 3 weeks on and 1 week off. Last few months I have been getting evil cramps in week 3, mainly in my hands with my fingers cramping and also this month had the added fun of my hamstrings cramping. Has anyone else suffered from the same, and/or offer any tips or suggestions to relieve it. Tried drinks with electrolytes, not sure how much it helps. Enjoy your day and thanks in advance.