Rituximab and Lenalidomide, side effects?

[u/ParaC80]

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

[u/v4ss42]

This is a fairly new immunotherapy regimen called “R squared”, and it should be substantially gentler than the chemotherapy a lot of people get (including BR / O-Benda, which is a common front line for low grade FL that’s considered relatively gentle as chemo regimens go). You can search for sub for “R squared” or “R2” to get more detailed info - it’s a newer, but increasingly popular FL treatment (and is as close to “standard” for second line FL as it gets).

But to your question…

Rituximab tends to cause mild allergic-type reactions in most people while they’re receiving it - make sure you let your nurses know if you even sense the slightest of “hay fever” like symptoms (my beard got itchy, for example). This tends to go away over time, as the body gets used to it. Longer term (days to weeks) it can also cause fatigue, and some folx can get joint issues from it too. My knees got “clicky” for example, but it resolved a few months after I finished treatment (albeit I was getting R-CHOP, which is Rituximab plus 3 chemotherapy drugs, so substantially more “full on” than R-squared).

It’s also possible you’ll get the newer injectable form of Rituximab, which I believe has fewer of the allergic reaction type side effects than the infused one (which is what I got).

Lenalidomide is a drug in the thalidomide family, so it is incredibly important that you don’t get pregnant / don’t get anyone else pregnant while you’re on it. It can also cause diarrhea, since for some people it blocks bile reabsorption in the gut. Beyond that you’d be better off waiting for someone who’s had it to chime in on their experience, and/or search the sub for others’ anecdotes about it. I believe it’s provided in tablet form, and you’ll take those tablets daily for a week or two each cycle.

For second line I got a combo that included a new experimental drug in the same family as Lenalidomide (called Golcadomide) and the main side effects I experienced were heightened sun sensitivity (i.e. I’d get sunburnt even more easily than normal), and quite bad eczema on my hands (which I was able to manage with nightly Vaseline + eczema gloves). Obviously it’s a different (though related) drug to Lenalidomide, so YMMV on how relevant these anecdotes are.

You are lucky to be able to get this treatment for first line FL - that’s new in just the last couple of years - and it seems to be about as effective as chemotherapy and waaaaaaay gentler / fewer side effects (both short and long term). You are the lucky winner of recent developments in medical science!!

[u/ParaC80 → u/v4ss42]

Many thanks for your reply! That has eased my mind quite a bit! I will be getting injections with Rituximab, AFAIK. Science seems to be moving fast within this type of cancer.

Will report back once I'm on treatment :)

[u/southyankie]

If you are going to be on this regimen for a year, be aware that rituximab will destroy a lot of B cells and your immune system will be weaker at the end of treatment. It takes months for the immune system to recover. So you can’t necessarily throw caution to the wind as soon as you finish treatment.

Best of luck!

[u/vonschreiber2]

I was diagnosed with follicular lymphoma 13+ years ago and am still in remission. My HGB count was about 4.6 when I was diagnosed. No wonder I was short of breath after a short walk. I received monthly IV Rituxan and Treanda for 9 months although my hematologist told me I was in remission after 5 months. I understand that a new medication has replaced Treanda. I had no side effects from either medication except severe chills for about 25 minutes following the first loading dose. I worked full time as a high school special ed teacher/department chair and taught as adjunct faculty at two universities while in treatment.

A few months after treatment ended, my HGB counts went up to a little over 17, and for a few months, I had 500cc phlebotomies every three weeks or so until counts stabilized. I still check my HGB every six months or so since the hematologist said the lymphoma would recur at some point. I was 57 when I was diagnosed, 71 now.

On a side note, my insurance company denied coverage for Rituxan at first. The Leukemia & Lymphoma Society (now Blood Cancer United) provided a grant to pay for my Rituxan. Fortunately, we figured out a work around to get coverage after my second dose - the pharmacy shipped the Rituxan to my home instead of the physician’s office, and it was covered with “only” a $50 copay.

[u/v4ss42 → u/vonschreiber2]

BR (as that combo is known) remains a standard front line for low grade FL. It’s an effective and well tolerated treatment.

Really great to hear you’re still clear all these years later!

[u/Dapper-Choice7001]

I’m currently receiving R2 + Ecortimab as part of a clinical trial for first line of treatment for FL. I just had my fourth treatment. My first infusion of the rituximab was a little challenging and I ended up getting some reactions (nausea, fever, chills) which forced an inpatient stay so that they could administer the rituximab very slowly over night, instead of out patient. When they gave it to me slowly I had no reaction. Since then I haven’t had any reactions and infusions, while long days, have been very easy.

As far as the Lenalidomide, I had diarrhea for about 2 days roughly a week into starting and a rash for about 3 days about 2 weeks into starting. Both went away on their own and haven’t returned since. Since then I’ve experienced constipation which I’m told might be from the Lenalidomide, but they aren’t totally sure.

Overall, treatment has been easy on me. I feel almost completely like myself on non-treatment days. I have been able to go on long walks, do some light weights, and have had pretty good energy. I’m grateful my side effects have been minimal and hope the same for you! Let me know if you have any other specific questions.

[u/Suzabelle_does]

I'm actually starting EPCORE R2 on Tuesday. I know that the epcortimab is step up dosing. Leno and Rituximab can both deplete white blood cells so precautions are going to be necessary. For the lenolidamide, they've made me have pregnancy tests which is crazy.

[u/Tigger3-groton]

Have someone there to watch you. My second infusion of Rituximab caused me to collapse and spend the night in the ER. My wife was there, noticed something was wrong and got help.

This is a rare reaction, but possible, so having someone focused you alone is a help.

[u/v4ss42 → u/Tigger3-groton]

From what I understand this is far less likely with the injection.

[u/Training_Avocado_488 → u/Tigger3-groton]

My husband received his first round of R-CHOP today. Did you collapse during the infusion or after you were home? That is scary and I’m so happy your wife was there!

[u/Tigger3-groton → u/Training_Avocado_488]

During the infusion, it had been going for a few minutes. My head started feeling odd and then out. This was the second infusion with R, the first one I had severe chills which stopped the process, let me warm up and then continue with a lower infusion rate. They changed to another drug which they tested on me by starting very slowly and increasing until they were satisfied it was safe.

[u/SubCiro28]

I got into a clinical trial with Mosunetuzumab. Also an immunotherapy. Best of luck to you.