CLL Support Association
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Any feel strange dull pain in lymph nodes in treatment as they clear out?

I am on both Imbruvica and full Venetoclax now. I on my 6th cycle of the clinical trial.

Over all I have been very good. My numbers have rapidly gone to normal. WBC 2.1 ALC 1.2, PLT a little low at 110. Others are good. IGA, IGG, IGM are improving as well.

I have been on full Venetoclax for 2 months with ibruvica now.

I sometimes get dull pain in various lymph node's. Neck , groin under arms. As far as I can tell my nodes are not growing. My doctor has checked at every visit.

Has anyone experienced this as they are nodes cleared out ?

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HI Hoffy

I Can't provide you with any information because I haven't started treatment yet. However I do have a question for you regarding Imbruvica. I will probably start the same trial you are on in two weeks and I was wondering what kind of common symptoms should I expect while on Imbruvica.

Best wishes on your treatment.

BC

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It Has not been too bad.

Some rash and fatigue a bit but it went away in a few weeks for the most part. Some soft stool a bit but nothing major.

I bought anti-diarrhea medication but never ended up using it. It was good I had a because my Son ended up using it.:)

I take my medication at night before bed and that seems to work well.

If I have fatigue it is while I sleep so that helps .

I nodes went down quickly within a week.

My nails are getting a bit weaker but not bad. I am taking biotin which is supposed to help with The nail strength.

Be well

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Well I hope I have good results like you. Sounds like you are handling the treatment well.. I can tell you I have some pain where my nodes are sometimes so this may be common when on treatment as well.

Thank you

BC

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I have been on ibrutinib by itself for 11 months now. For the first six months I had a lot of joint pain and muscle cramping in legs, feet, elbow and hands. No stomach issues or afib. All of it did subside but for six months I made sure I drank 2-3 liters of water a day, stuck my feet and hands in warm parrafin wax, rolled my feet on a lacrosse ball, soaked in epson salt baths to ease the pain, took D3, Calcium, Magnesium, Potassium and Biotin. Then all that passed and I started getting skin issues like red marks and blocked pores - that has also resolved. I treated skin on my face with a retinoid and vitamin C serum - the other red marks would just come and go. Now I am pretty much symptom free. I do have thin and brittle nails and have upped my biotin intake to 10,000 mcg. My numbers are going in right direction and scans look good also. Hope you have a positive response too! Just know the side effects can be managed and do resolve. Good luck!

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Hi Hoffy. I'm at about the same stage of the same trial as you. I can't say my nodes felt any pain - perhaps a tiny bit tender for a couple of days when I started Ibrutinib. They shrunk away in the first week.

All up, I haven't had any side effects of note yet. My counts are all in normal range now although my blood test a month ago mentioned I had "occasional" abnormal lymphocytes - better than almost all of them being CLL when I was at 200K!

We're all a bit different. It sounds like you're doing well, which is great!

Graham

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Did you have big nodes before treatment? Mine were very big. My WBC was about 90K but my nodes were big. That might be why I have some pains now.

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YES! I experience weird sensations/pain where my lymph nodes were.. This happened during treatment and still remains. I sometimes panic and wonder if it's coming back ... but when I have a feel ... Nothing. Don't over think it .. enjoy your remission ... x

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You describe what I feel where the large lymph node in my armpit. It went away the first month, but when I had scan after 6 months of BR there was still a slight "glowing". I then had 12 radiation treatments on it.

It is an indescribable sensation that dr says "I don't feel anything ".

Glad to know others have same experience.

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Same here.. I get groin pain and then worry its all coming back .. but like you .. Can't feel anything . I call it my nutcase moments!

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Thanks!! I am not alone!!

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I don't think it is typical, but my doc wanted to be sure. I'm treated at UT Southwestern.

I travel to be with my dad in Memphis and see a doc at UT Memphis and he wouldn't have done it. His opinion was surgery to remove the stubborn gland.

I have been in remission since August 2016. We are praying for it to be long lasting.

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Is that typical to do Radiation? I never hear about that. Where is your treatment being done?

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Sounds good!!!! I am paranoid to start...

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I have the same slight tenderness. On Ibrutinib for little over three months.. Nodes shrank quickly and have stayed down to normal size . But on one side of my neck they are just a little throbbing or tender. But are not growing. My only thought is that they were so swelled for so long that maybe the stretching and swelling keeps them tender for awhile

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Thanks!! I think you are correct.

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I guess I'm seeing ( feeling ) the opposite. Just completing 12 months on Imbruvica. Nodes shrunk back to normal in about 3 weeks and I've never looked back... no pain no tenderness and white I've still got more stuff under my chin...well at least the nodes are back to normal size

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Interesting - where is this trial if I may ask? I'm on a trial at Mayo comparing Ibrutinib and ACP 196. I'm on the Ibrutinib arm. These various combination you describe is where I think it's all headed.

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I am at UC San Diego.

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Swollen nodes in my groin is what got me into treatment. I thought I had a hernia! Nodes were very large and rock hard with significant pain. I have only been on Imbruvica 2 weeks and pain is gone and swelling is reduced by 1/3. Doc says it will all "melt away." Had the pain continued, he was going to prescribe radiation, but that is now off the table. Some side effects with mouth ulcers required me to stop for 6 days for healing, but now back on Imbruvica taking 2 rather than 3 pills a day. Doc said we will try 3 again in a few months after my body adapts to the drug.

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I take imbruvica pills before bed and that supposed to help with some of the stomach side effects. Thanks.

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What trial is this looking at?

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This trial combines Ibruvica plus Venetoclax . The goal is to get into deep remission and get off all drugs for some period of time or maybe forever.

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Hello,

As an update I just went to the doctors and my numbers are good. WBC was 1.9. ALC 0.9 .

So Node pain may just be random or maybe they are shrinking...

I just finished Cycle 6th on my Venetoclax plus Ibruvica trial.

I was Nuetropenic so they gave me a shot to boost my ANC and it worked. Came up from 0.8 to 7.8 in 2 days. That brought up my WBC to 9.6 .

My IGG, IGA, IGM are for the most part getting better.

IGA: 74 (normal)

IGG: 678 (low): normal range 700-1600

IGM: 17 (low): normal range 40-230

Over all I feel OK. I had a small outer ear infection that was helped with antibiotic drops.

Be well !

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