Venclexta users question.

[Gradyboy]

So question to people on Venclexta. Do you ever feel a weird sensation in your lymphnodes? I swear everytime I ramp up, I can feel it in my lymphnodes and spleen. I can't describe what it feels like not painful or anything. Does this happen to anyone else or am I cra cra?

[AussieNeil Partner Administrator]

Did you have particularly bulky nodes.spleen before starting treatment? I've not heard this mentioned before. Perhaps you've visualised your nodes and spleen shrinking and your mind has provided some 'special effects' .

Neil

[Gradyboy in reply to AussieNeil]

I did have pretty bulky nodes at the start, but now they are barely palpable. I started the 200ml today and I swear I feel like little prickly feelings in the nodes. Maybe it is in my mind. LOL It happens with every ramp up. Maybe I need a scan of my brain. LOL

[Pacificview in reply to AussieNeil]

That is pretty darn funny Neil...😁

[Poodle2]

I would say anything is possible. I didn't feel that way but I was getting fevers. Our body can react in all sorts of ways.

[Gradyboy in reply to Poodle2]

Are you on the full dose?

[Poodle2 in reply to Gradyboy]

Yes, I'm now. Did the usual 5 week ramp up. It was not easy, I seemed to be very sensitive to the drug but since I got onto the full dose, I have been doing fine. Still have some nausea and stomach cramps, diarrhoea about 1x month and it does effect my neutrophils but it is a small price to pay I think.

[Jmiah717]

I had weird symptoms of all sorts the first day or two on each ramp up that went away by the next one. Claritin helped a little a few of them. Now i’m on full dose and don’t have many side effects at all. Some occasional nausea or stomach issues.

[Poodle2 in reply to Jmiah717]

Great to know you are doing well! How far are you now. Have been thinking about you and how you are doing. ❤️

[Jmiah717 in reply to Poodle2]

Hey, treatment buddy! I've just started cycle 3. A few more Obin infusions left and just taking these four massive pills every day. All blood counts are in the normal range. Platelets have risen to nearly 200! Been fighting a bunch of viral illness for much of this thanks to daycare. Nothing terrible though. I hope you are also doing well. I had another bone marrow biopsy but I don't understand the results. So, I'll see what they say on Monday when they are back in.

You have to be on what, cycle 5 or so?

[Poodle2 in reply to Jmiah717]

Amazing! Cycle 6, no more infusions 🎉🎉🎉🤣same here, viral colds and stomach bugs, you name it - pretty much something once a month. Saw my immunologist last week, he said it's normal with three small kids at home. I get over it within a week or so ...so as long as that continues, I'm not complaining 😉 so happy it is going well🙏🏻❤️we just need to get through this winter, right 🙂

[DanBro1]

I was on 400 MG Venclexta for 12 months..... nothing unusual to report other than my WBC went south and I had to stop for a couple of weeks.

[Gradyboy in reply to DanBro1]

Are you off it now? How are you doing?

[DanBro1 in reply to Gradyboy]

I completed my 12 months regimen March 1st ('22). I have been off Venclexta for 10 months. Getting more energy each passing day!

[peghip]

Prior to reading Ausie Neil's post U was having similar thoughts. It may be that as they shrink it is causing a sensation but if that was the case I would have thought it would be continuous. The fact that it is when the dose is increased it is more likely to be something imagined. That dies not mean you're crazy but it is why they do blind trials with drugs - it's a natural thing.

[Pearlpink]

hi Gradyboy. Yes!! I got exactly that! Completely random but got prickly feeling in armpits! Not anymore though now I’m on full dose.

I also got a funny feeling in my spleen but not prickling.

Weirdly, long before I had treatment I used to get prickling in my armpits the day after I had tiny amount of alcohol. It was only when it happened after every single time that I realised what it was. I looked it up on Google and it said that some people with lymphoma get prickling in armpits after alcohol which of course freaked me out!! I thought maybe the sll side of cll was happening - but it wasn’t!

I didn’t have very bulky nodes, but did have very large spleen which has reduced a bit so far.

I did seem to have very sensitive lymph nodes though which flared up massively with covid vaccines and infections but then went small again.

In the article about prickling in lymphoma they thought it was probably that alcohol caused slight swelling and stretching of the capsule of lymph node that some people could feel. Maybe it’s the opposite - that we feel it when they shrink!

So I didn’t think it was weird when mine prickled with venetoclax lol! Must admit when I mentioned the prickling after alcohol to my first consultant years ago she looked at me as though I was mad lol 🤣🤣 so maybe we should just describe ourselves as a select group !

So thrilled to hear am not alone lol!

[jj411]

You are not cra cra. There are so many different side effects with Venclexta, I had to stop mine in month 9 (400mg) because of cardiac events. I would also get spleen and lymph node discomfort during the treatment and sharp targeted pin point bone pain also lasted for many months. Hang in there.

[WittyApricot]

I have had all kinds of side effects…i ramped up and had to ramp down due to side effects.

The prickling: I feel it as like a. Electrical current almost, but short and quick. I felt that occasionally before treatment and once I started treatment I felt it more. I feel Like we are feeling the movement/change in the lymph nodes as they move out of stagnation. If that makes sense. If we are clearing up the CLL then the nodes are shrinking but they move through the lymphatic tissue and out. Growing they were stuck so it makes sense now they are moving, some of us are sensitive and experience the subtle shift.

I’ve been on V since end of August and have had so many side effects that I think for now we are staying on 200 mg. Only feel that electrical/prickling feeling once in a while now.

Hope that makes sense.

[difor29]

Yes! I thought it was my mind playing tricks! I’m on a clinical trial with Rituxan and Venetoclax(800mg) for Non Hodgkin’s Lymphoma. It’s a 2 year trial and I just finished my 1st year. I had EXTREMELY large nodes throughout my body. I would feel the same thing as you but only on my largest nodes. For reference, my largest node was the size of a baseball, which was right by my stomach. Every now and then I would feel a prickly sensation on that node and a few other ones also. To be honest with you I really think that feeling is the V working and shrinking our nodes. All my nodes are normal size now and I do not feel that prickly sensation anymore.

[craterlake]

Hi Gradyboy ,,,I have had that feeling also . on calquence and now on Gazyva .. i have been on gazyva for 2 1/2 months and don't feel those sensations any more . my spleen was huge and my lymphs slightly swollen . i think they are all normal now. i am having a ct scan next week to check them out before i start venclexta . hope you are doing well !!! ... blessings , james

[Gradyboy in reply to craterlake]

Venclexta so far has been a breeze for me. I cànt even tell I have taken it except the little prickly feeling the first night of ramp ups. It's like you feel it working. Then the next morning my lymph nodes would be smaller. I am on the 200's now and can't find a node. It's quite amazing. My blood work changes every week but all within normal range. Good luck to you!

[craterlake in reply to Gradyboy]

That is wonderful .. thanks 😊

[IRN83]

I had Venetoclax 2.5 years ago followed by 2 years of remission and have been on it 10 months again. I haven’t felt anything.

But we are all unique and respond differently. I had Ibrutinib about 5 years ago and had a severe reaction that. Landed me in the hospital.

Sorry this is happening to you. But, I hope it is working and destroying those cancer cells.

[Gradyboy in reply to IRN83]

This doesn't bother me at all. It's just is a funny feeling only on ramp days. I have had zero side effects from my V&O treatment. I find it quite amazing to be treated for cancer and feel so good. I keep waiting for the show to drop. Praying hard it doesn't. Best wishes and prayers you continue to do great.

[SofiaDeo]

You know, now that you mention it, I have had some oddball electrical "shocks" throughout my *entire body*. Like my entire nervous system "released" all at once. I was worried they were symptoms of cardiac electrical problems. I haven't had any recently, but definitely did a few years ago. My CLL is more highly invasive in my marrow, as opposed to nodes. Hmmm.

I am also wondering if Venclexta can affect hearing. I have some hearing loss after a year on it, in one ear. I get a hearing test every year for the various frequencies, and this year I have tested "off". I also am having an annoying buzzing/ringing 24/7. I just was tested recently, and will begin the process of seeing ENT or whoever. I do have some sinus blockage and am hoping that may be the cause of the loss as well as the ringing/whatever. It's beginning to stress me out, to not have silence when I try to sleep. I have started to sleep with a TV show on low in the background, otherwise the ring-buzz keeps me awake.

My dad had severe sinus problems, perhaps I have tissue obstructing things and that is the problem. A previous CT showed enlarged nodes/something in my sinus area, but that was pre-treatment. If it's scar or other misshapen tissue I will have to address that.

[Eliotf]

yes, there were weird sensations that would last a few days. Sometimes it was a kind of soreness or a fullness feeling

[Gradyboy in reply to Eliotf]

Yep that exactly how mine feel.

[Naka]

I noticed my nodes gone by the first week after starting V. Off topic I hurt my shoulder about 4 months into V with just a sudden motion and think it was a tendon tear. It wouldn't heal till at least two months after I finished treatment. I'm a competitive tennis player (2x a week) and hike up and down a canyon 6x a week (6-7miles)Two weeks ago I didn't tie my high top hiking boots up properly and my ankle start to hurt slightly. The next day it was my knee!! I'm wondering if another Venetoclax side effect could be weaken tendons🧐

[Amberesque]

I have this experience with my lymph nodes and spleen from acalabrutinib (Calquence).

[DoriZett]

Ha! I was on Acalabrutinib (11q unmutated - bulky nodes) and I asked my specialist how exactly does the drug "kill" the cancer cell? He said it is unknown at this time. I swore I would feel like a sharp zap in my nodes from time to time after I started treatment - and I visualized the cancer cell exploding. Not scientific at all - just my personal experience/fantasy....

[Gradyboy in reply to DoriZett]

That's exactly what it feels like. That's my theory and I'm sticking with it. 🤣

[lisakc1]

My husband is on cycle 4, has had 5 out of 6 O infusions. He has only experienced, edema in the ankles and feet, constipation, low magnesium, lethargy, and muscle weakness. This sounds like a lot, but seriously, nothing compared to the complications of CLL. His lymph nodes and spleen now down to normal size! I believe his side affects are mostly from the Venetoclax. His blood work looks great, but while his WBC is down, the morphology still shows abnormal White Blood cells, so its a work in progress. His specialist is very happy. Working hard at getting through the holidays safely, staying virus free. Telling close family that they need to get vaccinated and tested before gathering with us. We aren't too popular these days, but I can't worry about that!

I will mention that he has had some new muscle aches, but I attribute that to a combination of his body adjusting the meds, reduced exercise due to weather and cold, and possible atrophy in ligaments that were previously strangled by enlarged lymph nodes. Who knows? I'm definitely not a medical professional, but the cure for us is a healthy diet and gradual increase in exercise to a stronger fitness level over time!

Happy holidays to all and looking forward to a much healthier and happier 2023!

[Bunnie1]

I haven’t noticed anything weird. The Venclexta is way better than the imbruvica I was on before.

[Gradyboy in reply to Bunnie1]

I am very happy on the Venclexta so far. I begin full dose on Thursday.