Week 3 of Ibrutinib. Ear problems: I’m m on week... - CLL Support

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Week 3 of Ibrutinib. Ear problems

Mjklover profile image
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I’m m on week three of Ibrutinib and the glands in my neck hurt as well as my ears. Is this normal?

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Mjklover
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annmcgowan profile image
annmcgowan

Hi I am on Ibruitnib, 29 months in. I did not experience these symptoms at the start of treatment, but we are all different and present with different responses to the same drugs.

I always check with my haematologist or his nurse when I am unsure. Have you tried them?

Ann

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Mjklover in reply to annmcgowan

Yes they say they are well documented side effects and to take Aleve or Tylenol which I do but it doesn’t help much. I had a 90 minute massage last night which helped. I wonder how long it will take before I start feeling better.

annmcgowan profile image
annmcgowan

I hope you feel better soon.

An

Hi Mjklover ... we are on the same pace. I'm entering my 3rd week of imbruvica (same drug). I do notice an uncomfortableness in my neck and at times I have trouble speaking. When I had my CT scan done to confirm the return of the cancer the nurses asked me if I had trouble speaking. The cancer is not normal to our anatomy so it makes sense that it would put pressure on our body.

Last weekend I had alot of body pain and I could barely move my neck from side to side. I am pretty sure this was due to an abundance of toxins in my system from the dead cancer cells, medication, etc. So I did a 24 hour green juice cleanse supplemented with protein shakes as I am anemic and also hypoglycemic. By miday I was feeling much better. I woke up in the night with a good deal of pain in the upper chest area but by morning it had disappeared. I could move my neck freely. What fasting does is clean out the toxins and "garbage" in the body. Eating as "clean" meaning whole foods no junk food will also help.

Because I still had residual pain in my hands and elbows I wanted to go for another 24 hours but did not want to get too weak. Will probably do a night cleanse to clear that up. I have attached a 3D model of the lymph system. It covers our body quite extensively. Hope you feel better soon.

lls.org/3d-model-library/ly...

Mjklover profile image
Mjklover in reply to

Well I do have some good news, I’m on week 6 now and the pain has really subsided. I feel like I have more energy and somewhat normal. Numbers are down so it’s working.

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