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CLL Support Association
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New to the CLL site

I am new to the site...have posted a couple of things this week but didn't introduce myself. I have been on this CLL journey since the age of 37 (diagnosed in 1997); however, I had had swollen lymph glands several years prior. During the past 21 years, I have watched my WCC slowly inch upward with no obvious symptoms; however, a couple of hospitalizations this year (one in January for the flu/pneumonia and one in July for food poisoning dehydration & symptoms that just wouldn't go away), an enlarged spleen, and my overall blood work prompted my oncologist to say it was time to start treatment. I started with Allopurinol (300 mg) on August 18th and then Imbruvica (280 mg) on August 28th. During the first 30 days of treatment, I have experienced a number of side effects, but the tummy distress has resolved and the mouth sores/gum tenderness is getting better. The one that has been the biggest challenge is migrating joint swelling and pain. Prednisone helped tremendously, but my oncologist only wanted me on it a short period of time...once the regimen was over, the swelling and pain returned. I have read on this site where a number of people who experienced this same side effect saw it diminish as treatment progressed...praying that will be the case for me as well!

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Oops...just read the post from Paula that suggested not writing in one long paragraph for easier reading. Will remember that next time I post! :-)

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Ive been on imbruvica for over a year. Most of my joint and muscle pains diminished after about six months. Any flare ups I have now are not severe.

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Soooo glad to hear that! Since I have had no history of arthritis or joint issues, this particular side effect has been distressing. My husband keeps reminding me that the med is helping me, and I do know that, but when I am limping due to a severely swollen and painful knee, it is a little harder to remember! :-(

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Hi Lisa,

Your 21 yr journey prior to treatment will give a great deal of hope and encouragement especially to our younger members.

I’ve no personal experience of Ibrutinib but it’s clear that joint problems are a notable side effect of this med but many of our members report great improvement if they ‘weather’ the side effects until they subside. Easier said than done I appreciate but I’m sure you’ll hear from people who can assure you these issues resolved significantly after a period on the drug. I hope that’s the case for you.

Best wishes,

Newdawn

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Yes, it was a long watch & wait. Had hoped it would never end...oh well. Thanks for being an administrator on this site...know it has already helped me in just the few days I have been checking it out.

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Hi Lisa,

Welcome to the group. Great to hear from someone who’s been 21 years on Watch and Wait!

Please don't worry too much about paragraphs. Yes, it’s hard to read posts written as one long paragraph, but your paragraph wasn't as long as some I've seen. And you're new here - it's good that you're writing at all :-)

I’m sorry to hear about your side effects with Ibrutinib. I started it a year ago, and seem to have had almost every possible side effect. The worst thing was, like with you, the migrating joint swellings and pain. I could hardly walk – had to use crutches to get around. Sometimes shoulder and neck pains would wake me up at night when I rolled over. My feet and fingers became very puffy, I had mouth sores, tummy upsets, cramps, itchy rashes, blurred vision, cracked bleeding finger tips. I was extremely tired and brain-fogged. There was no way I could drive the car…

My haematologist said he could give steroids for the joint problems but wanted me to try and cope without them. (Like you, I’d never had any joint problems before). He prescribed Co-Codamol for the pain, which I took at regular intervals every day – I needed it if I was going to walk at all.

Thankfully after a couple of months the joints suddenly went back to normal. The heat and redness went out of them, and they shrank back to usual size. The excess fluid drained out of me too, and the puffiness of hands and feet disappeared. I hadn’t had any special treatment – it just all got better.

I had a second bout of joint pains a few months later (which were actually worse than the first bout), but after a couple of months they calmed down again, and haven’t come back since. I still have the stomach issues though, and get pain a couple of hours after meals (in spite of a variety of remedies prescribed by my doctors).

Most people who get joint pains with Ibrutinib do get better after a while, but it can be very hard-going at the time. And people vary a lot. I’ve just noticed that ImGrammy still has joint problems after 9 months. :-(

I’m sorry I don’t have any suggestions for dealing with the joint pains, Lisa, other than painkillers and patience. I’ll be interested to know if the tart cherry juice helps you.

Wishing you well,

Paula

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Paula, my joint swelling and pain has been limited to both hands, knees, and feet...so far no where else. My left knee has had the most issues, so my oncologist is wanting me to have an MRI to see if something else is going on which is contributing to the problem. I actually think it is unnecessary since I have had zero problems with the knee prior to the Imbruvica, but she is insisting. I think part of the issue is that none of her other Imbruvica patients have had this problem, so initially she dismissed it as incidental...think she may still be trying to pinpoint a pre-existing condition.

I have also had general swelling in my left leg and foot but not the right. After 2 weeks on the med, my oncologist ordered a doppler to make sure I didn't have a blood clot...everything was fine.

I have a cane in my car just in case I need it, so I definitely understand the need for crutches! Ugh!

I am just a few days into the cherry juice, so we will see if it helps!

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Hi Lisa,

My joint pain is also in my left knee. It was quite painful for about a month and now more of a dull pain - a nuisance, really. I’m on month 7 (almost 8) an I/V trial.

I hope that your pain dissipates soon as I know how challenging it can be.

Best,

Fell

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Hi Lisa,

You say your joint pains have been “limited to hands, knees and feet”, but that’s still a LOT of places to have pain!

I understand how you think the MRI on your knee is unnecessary, seeing as you had no problems with it prior to Ibrutinib. Also the way that Ibrutinib joint pains hop from one place to another is not like standard joint issues (as far as I know). I guess your oncologist just wants to cover all possibilities. I’m surprised though, that none of her other Ibrutinib patients has had any joint problems.

Good that you keep a cane in your car, just in case. Don’t hesitate to use it if you need to. The crutches helped me very much – though they didn’t live in the car as there was no way I could drive, and hubby had broken his leg at that time and couldn’t drive either! Not the best of times for us..

Like you, I also had generalised swelling in feet and lower legs (the left much more than the right). My hands also became swollen and puffy and I had to take off my wedding ring. My feet felt tight and there were some shoes I couldn’t put on. But after bout 6 weeks I woke up one morning and everything was shrinking. Just a day or two later and all was back to normal! I’d put on a lot of weight in those early weeks but was soon back to my old weight as the excess fluid drained away.

I’ve just noticed that more recently you said you’re now pain free! WONDERFUL. I know how amazing that feels, after a time of continual pain. I do hope the swollen foot also goes back to normal soon.

Any joy with the cherry juice?

Best wishes,

Paula

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After I posted my comments about the migrating joint swelling and pain, it started diminishing Thursday evening. I have had only minimal pain (a little in my left big toe joint) since then, and my left knee is completely back to normal. I also have a patch about the size of a half dollar on top of my left foot that is red, warm, and puffy, but it is not impacting my ability to walk. Not sure if this is the calm before another round or if that particular side effect is subsiding, but I am thrilled either way! I have been continuing the cherry juice, and I did start it before the swelling subsided, but I have no idea if it is what helped.

I did go for the MRI yesterday, but I wound up not being able to have it. I have a tiny piece of metal in my ear from a stapedectomy in 1993, and I could not with 100% certainty tell them what kind of metal it was. The doctor over that department was hesitant to do the MRI just in case the metal was magnetic...said it could damage my ear since the MRI magnet is so strong. I was able to find my records last night and now know the type of metal in case this comes up again.

One side effect I have been having that seems to be getting worse is bruising. I have always bruised easily because of low platelets, but now it is ridiculous. I just barely bump against anything, and I get a large bruise with a knot (I am sure it is a hematoma) in the middle of it. They are so sore, and one especially large one down right hurts! I have bruises scatter over a good portion of my body, so I am wearing slacks and longer sleeved shirts to cover them up!

I see my oncologist tomorrow, so after 5 weeks on Ibrutinib, I am curious to see if there is any impact in my blood work.

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Hi Lisa, Iv already been treated with chemo fcr in 2010/2011. Its over 7 yrs ago and in the next few mths will need ibrutinib. Its interesting to read others side effects because Iv got debillitating fatigue and my Consultant is worried if he starts me on treatment because of this, I might feel worse than I do now. Did you have fatigue before treatment? Do you have it now whilst on ibrutinib? Anne

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Anne, I have never been the Energizer Bunny, but I can't say that I had any observable fatigue prior to starting the treatment...or since I have been on the Ibrutinib. Definitely praying I don't...and the same for you!

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Hi Lisa. I too recently started Imbruvica (Ibrutinib) and have been running through the whole list of side effects in a short period. This past week I started with joint pain. I have a couple of hot spots but it is otherwise migrating to different joints everyday. I am pretty active and have never had joint pain in the past so this is quite new for me.

Yesterday was an especially bad day as the joints in both of my knees and legs were sore and stiff. I had a time getting up and down my stairs!

For the last 3 days I’ve started my day soaking in a hot tub. It seems to warm up my joints and get them going. And I try to work the joints as much as I can. It’s hard to do but once I get them going it really helps.

I have a read lot about joint pain from this drug on the Internet in the last few days and the most common response is that it is short lived. I certainly hope that’s the case!

I joked with my husband that this drug is like a heat seeking missile trying to find bad cells in all the nooks and crannies - my glands have shrunk back to normal so it’s looking for new spots everyday. I’m sure that’s not the scientific reason, but it gets me through the day! And if that’s what it takes to get rid of my CLL I’ll manage :)

Hope you feel better soon.

Pam

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Pam, sorry to hear you are having the same problem. Mine hopped all around...as one spot would start waning, it would appear somewhere else. It started in my left knee, moved to the base of my right thumb, then the bottom of my right foot (thought I had developed plantar fasciatis from limping, but it only lasted 2 days), next the back of my left hand which moved to the middle finger then the base of the hand where it attaches to the wrist, next to the top of my left foot, and then my right knee.

Once I started on prednisone, it all went away except a little stiffness and swelling in my left knee. The bliss lasted for 12 days, but once the prednisone was out of my system, my left knee swelled up and was extremely painful, but interestingly enough, it didn't hop around...stayed in my left knee for 6 days before going away. I am so excited that yesterday and today have been pain free! My left foot is swollen and feels odd from the tightness, but I can live with that. Not sure if this is just a reprieve or if like others it is settling down. Praying it is the latter!

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Wow. Sounds extremely similar to what I’m experiencing. The pain is in my left elbow and left hand thumb today. But my legs and knees are better (still sore though). The day before it was in my right thumb and feet which are pretty much pain free now. I feel a twinge in my right elbow so I suppose that’s where it’ll be tomorrow. It’s like playing Whack-a-mole with the heating pad!

I will see my doctor this coming Wednesday for the next cycle of my treatment. If it isn’t better by then I’ll ask about prednisone.

I hope your pain-free days continue! It gives me hope that mine will be short lived as well.

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Hi! I am 53 years old. Diagnosed at age 48. take the full 420 mg a day since feb. 2016. Only side effect I have is hunger. .. it’s not listed as a side effect on the list of side effects but think it should. so far so good. I do get joint pains from time to time but I believe it’s the side effect of the FCR I did in 2013 or my hashimoto

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Interesting on the hunger...I have actually lost a little weight. So strange how everyone responds so differently to the medicine.

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I forgot to mention brittle nails but I remedy that with a 5 min daily soak of warm olive oil. May I ask why u are on a reduced dosage?

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