I am having hernia surgery tomorrow and stopped Ibrutinib 7 days now. On Friday (5 days in) I can feel lymph nodes on both sides of my neck and under my armpits
I was told that I could restart taking my pills if I wasn't bleeding.
Is it normal that my lymph nodes would return so soon aster stopping the pills?
Since everyone is different, it's hard to have a definitive answer. In the head/neck area, sometimes something as simple as brushing your teeth too hard causing gum irritation that allows bacteria from the mouth getting into the bloodstream, might temporarily affect lymph nodes. Stopping your medication does mean the cancer cells are able to multiply instead of being killed off, remember. Whether blood counts rise or the cells stick in your lymph nodes is unpredictable, unfortunately, including how quickly lymph nodes change. Ask someone to inform your CLL doc of your concern/how quickly you feel the nodes swelled tomorrow when you get to the hospital, if you can't call their office directly today & leave a message. Since you mentioned you were told it was "ok to restart the med", I am assuming you have already spoken to the CLL doc? Or was it the surgeon who said go ahead & restart if you wanted to? It's good to give our docs all the information we can regarding the course of our disease. But please try not to stress; I imagine having this happen over the weekend just before surgery is unnerving & distressing!
Thank you for your reply. It's just that I didn't think that there would be so quick a reaction to stopping the pills. I last saw my hematologist in November and he told me that since my numbers have been normal for about 5-6 months he was thinking about on my next visit in February he would give me a MRD test and perhaps he would be able to stop Ibrutinib. Based on his comments you can imagine how surprised I was to be able to feel these lymph nodes.
I bet! Just goes to show that even if our blood looks "clear", the pesky cells can hide in our lymph nodes & bone marrow. Most inconvenient 😜
You should make your haematologist aware of the risk of disease flare when you go off Ibrutinib, particularly if you haven't been on it for long: healthunlocked.com/cllsuppo...
Neil
He's the one that told me to stop Ibrutinib 7 day before surgery. I started taking them in October 2019.
I appreciate that your haematologist told you to go off Ibrutinib before surgery - that's the correct approach in order to reduce your risk of post surgical bleeding. However, from your comments about him being surprised at your nodes quickly reacting to going off Ibrutinib, given quite a few members have reported similar experiences to going off Ibrutinib, it seems your haematologist isn't familiar with what is a reasonably common occurrence. In nearly all cases, the swelling nodes resolve when Ibrutinib recommences, but per the referenced post, some people see what looks like Richter's Transformation, with some even being given unnecessary treatment for what was just a strange rebound reaction to ceasing Ibrutinib.
Also I'm somewhat concerned at his suggestion of stopping Ibrutinib after about 18 months on Ibrutinib, particularly given your response now to going off it temporarily. Early trial results found that only 10% of those on Ibrutinib reached MRD negative after 4 years on Ibrutinib. You really need a bone marrow biopsy MRD test to be sure that you've truly reached undetectable MRD (uMRD), the new term for MRD negative, not just a blood test check.
By the way, it would help members respond better to your posts if you took the time to update your profile here: healthunlocked.com/profile/... noting key information, such as when you were diagnosed, your prognostic information if known, when you started on Ibrutinib and other milestones in your CLL journey.
Thanks!
Neil
Hi Neil,Slight misunderstanding... It was I that was surprised... I haven't reached my hematologist yet......
This is not to alarm but to inform. I had similar (but more pronounced reaction) within 3 days of stopping a BTK inhibitor. To start a clinical trial I had to be off them for about a week. My nodes were big and painful. Before your surgery make sure they take your oxygen saturation levels. Because of explosive node growth mine dropped to 86%. If your oxygen saturation is lower than normal (usually mid to high 90s) make sure to discuss this with your docs and especially anesthesiologist prior to surgery.
I had to stop ibrutinib a number of times over the 6 years I was taking it and every single time my nodes enlarged quickly. They always went down just as quickly when I resumed treatment.
Everybody is so different. Maybe it depends on how long you were in remission. I just started back on Ibrut 2 days ago after 5 weeks off it, due to surgery. I was lucky as it did not change anything. But once you are back on it will most likely bring things back to normal.
That is certainly not my experience. When I started ibrutinib 10 months ago I was full of lymph nodes everywhere, but 6 weeks of ibrutibin virtually eliminated them. Since I stopped the pills for two operations, one I stopped for 7 days, and in September stopped for just over 2 weeks before a procedure. There was no return of lymph nodes in either case.
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