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CLL Support Association
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15th day on Ibrutinib and some side effects.

Well it's been 15 days since I started IB on the clinical trial with Venetoclax . I have had several minor side effects so far that are worth mentioning. I have experienced.. Occasionall headaches.. Muscle cramps.. Bone pain..in knees.. Hands... And a rash just appeared on my back and chest. It doesn't itch though. Has anyone else experienced all of these symptoms? I'm pretty sure these are all common symptoms from IB.

Thank you

BC

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I have had alot of those in various ways. They got better. Taking at night after dinner seems to help.

Stretching seems to help with muscle tightness as well,

BTW- Mouth wash seems to help to avoid cold soures in the mouth.

Biotin is suppose to help keep nails strong.

Be well,

Hoffy

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Thanks Hoffy.. I'm taking Biotin already and it has helped me... I will try using mouth wash to avoid cold sores.

Thanks for the info. IIt's good to hear that things do get better.

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BC, look for mouthwash without alcohol. Others have also shared use of "magic mouthwash" available from pharmacies but you need a prescription. Our research nurse at Anderson said they don't prescribe unless/until ulcers develop.

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Okay will do.

Thank you

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A teaspoon of Baking soda in a glass of water at least three time a day rinse your mouth with. This tends to keep you mouth environment more alkylating which is healthy. This is to prevent mouth sores. When you have mouth sore then you would need a prescription mouth wash.(Majic Mouthwash)

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My wife also said to try that.. I will give it a try

Thank you

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I also take my IB at night - around 8:00-8:45 and I did that based on experiences from what I've read on this site. I have had a little nausea but not too much but so far no rashes. I also take Biotin as well as Tumeric.

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Even better than mouth wash is two drops of Oil of Oregano on your toothpaste when brushing. Before spitting it out, I swish it around as you would a mouthwash, and I don't rinse with water. Oil of Oregano has anti-microbial properties. It has a tang to it, so more than two drops dances on the tongue.

Personally, I prefer using a food substance that works well rather than chemicals. Since starting this practice twice a day early in my Ibrutinib era, I haven't had mouth sores in a year.

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Good advice I will try that.

Thank you

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I use tea tree oil in the same way. I have not tried Oregono.

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I'm on same trial. Broke out in a similar rash. Allopuronol (sp) was the problem. They substitited another drug.

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I'm taking Allopurinol. I see my doctor on Friday and will ask him about it.

That could be the problem.

Good luck on the trial.

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I had the rash, like you it did not itch, and made me went away after a week. Various strange bone aches and pains as well as some muscle issues come and go. Can't use any Aleve or Advil or Tylenol due to my liver; but heat seems to help some. Also, mine have not lasted long at a time. I am not starting on Allopurinol until we add the Venetoclax the end of the month. Hope things get better!

Becky

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Thanks Becky. I'm going to try the heating pad to see if that helps.

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BC

I am on IB only for 4 months

My pain was in the same places. Ice packs for 20 minutes 1 hour apart seemed to both shorten the duration and decrease the intensity of the pain. The salonpas pain patches really helped overnight. I often woke in the morning with pain but it was gone by mid morning.

The episodes gradually decreased during the second month and rarely occur now.

Woodfin

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Good to hear it doesn't last long.

Thanks for the tips.

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I had much the same experience early on with Ibrutinib. I found that the worst of my symptoms were week 2 and 3 and then they diminished to much less frequently and usually transient in a few days. I get bone/joint pain about 2-3 days a month, occasional mouth sores, rashes that last a week or so but don't itch (just unsightly) and weird cramps, mostly in hands but occasionally elsewhere.

Good Luck and hope this is just a bump in the road.

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I'm in week two so I'm hoping this is the worst of it.

Best Wishes

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Hi BC,

I have been on ibrutinib for about 7 months. I am on the UK FLAIR trial which had six months of Rituximab IV plus oral Ibrutinib for as long as it takes.

I had similar joint pains to you, typically staying for a day or two each time. I don't know whether it was Rituximab or Ibrutinib or both which caused it.

I suggest that you ensure hydration which seems to have helped for me.

Best wishes

Naboo

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Thank you. I also have a strange ichy feeling under my right foot.. It feels like the nerves in my foot are on fire.. The more I scratch it the more it iches it also becomes inflamed and then goes numb.. I'm going to mention this to my doctor tomorrow when I see him. Have you experienced this? Sometimes my finger tips feel like they are on fire.

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Peripheral Neuropathy?

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Never thought of that. I did have this happen to me before I started taking IB as well.

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Sounds like neuropathy. Don’t know of any connection with CLL 😳

Woodfin

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PN is very common in CLL as are other neurological disorders...

However, the exact relationship between neurological manifestations and CLL remains to be elucidated, and it may be difficult to establish whether they are exclusively neoplastic, paraneoplastic, inflammatory, iatrogenic or simply incidental.

It is likely that different pathogenic mechanisms take part in the genesis of neurological diseases. Here we provide evidence that PN is not such a rare complication in patients with CLL.

After ruling out PN due to concomitant diseases or iatrogenic, a percentage of CLL-associated PN still remains. Its incidence increases during follow up and occurs more commonly in subjects with unfavorable biological prognostic makers, especially in those who present a monoclonal protein.

The high percentage of CIDP in our cohort (25% of the patients with neuropathy) deserves consideration and is consistent with lymphomas.

Large study

ncbi.nlm.nih.gov/pmc/articl...

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It's not constant though. It doesn't happen often. If it were neuropathy I would probably be in pain all the time. I won't know exactly what it is until I see my doctor on Friday.

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Learning everyday 🌞

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BCTexas- I'm glad you're doing well on Ibrutinib. I started on it just over two months ago and have some very minor side effects: minor aches, some very small, minor red "blotches" on my hands and upper chest, along with some "phantom bruising" (bruising where I know I have not bumped myself). I also had a very minor, brief period (a few minutes) of lightheadedness in the first week. All of these resolved themselves usually within a very short amount of time, a few days at most. Wishing you great success on Ibrutinib and good health!! By the way, I went to graduate school at The University of Texas at Austin (1978- 1980) and loved the area. Also went back for a visit a few years ago and toured the Hill Country with my wife, who'd never been to Texas. I told we'd be visiting a foreign country- and she loved it. Best, G

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Good to hear from you Gene.

I'm glad I live in Texas. MD Anderson is not very far from my house. I'm glad to hear you are doing well on IB. I just finished my ramp up on Venetoclax. 😁

Best wishes

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