CLL Support Association
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wondering about ibrutinib

I am back. My husband's full remission after his initial 6-month chemotherapy lasted a mere 14 months, and his blood counts are rapidly rising. They are talking about beginning the next step- ibrutinib.

I am interested in hearing your experiences with this treatment. What are the side effects? how will it effect our daily lives? - Are there amy lifestyle tips and recommendations for us?

Thank you

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For me (first line) hardly any and nothing major - so far. Haveing heard what happens to other people on chemo. I am so glad I picked this route rather than FCR.

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Hi I have had very few minor and time limited side effect on Ibrutinib and rituximab. My lifestyle is the same apart from drinking litres of water a day.

Good luck

Ann

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Firstly I must say I have no experience of ibrutinib!

However, I did chlorambucil in 2005 and FCR in 2015.

Like all treatments the medications have some side effects but not all patients suffer from them.

Reading up on ibrutinib side effects is a must as well as discussing them fully with your husbands medics.

Risks of bleeding and atrial fibrillation appear to be just two of the possible side effects and before prescribing your medics should look seriously into any comorbitities your husband suffers from.

I believe that there is a guide line in respect of prescription which directs medics to who may be at risk from comorbitities and I am sure some more knowledgeable person can point you to it?

AussieNeil may be able to help?

In short do your research before hand so you can discuss this fully with your medics after which your mind should be put at rest and you can be assured your husband receives the best possible treatment.

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I suggest some of our volunteers and other members might like to share their experiences. Plus we already have many who have shared their experiences in previous posts, which can be found by searching for Ibrutinib.

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Hi

I was virtually exactly the same time frames. I began Imbrutanib 3 weeks ago and apart from one minor nosebleed and a few headaches at the beginning I have had nothing else since. I feel a lot better in myself and have had major reductions in the size of my enlarged lymph nodes.

Make sure your husband drinks plenty of water as bad cells breakdown rapidly and need flushing out , 3 litres a day recommended, good luck and I hope you have the results as me.

Dell

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Thank you

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I've been on Ibrutinib for 21 months with only minor side effects. It has saved my life.

Virginia

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I have been on Ibrutinib for six months now, and it has worked very well and swiftly for me with basically no side effects. I may have had a little bit of diarrhea and heartburn in the first few weeks. I hardly remember now. But basically, I wouldn't even know I am taking drugs, that's how invisible it is for me. My lymph nodes, spleen and liver shrank very quickly. My platelets were back to normal in one month. my Extreme anemia was back to normal in 2.5 months. My neutrophils, which were 0.3 when I started, rose to 1.2 in the first month, but they won't rise higher. Presumably the Ibrutinib itself is suppressing them now. Every now and then if my heart starts pounding, I worry about AFib. But so far nothing. So for me, Ibrutinib has fixed everything and been a very easy ride. But everyone is different on this drug. I hope your husband has the same easy ride I have.

kim

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You are still severely neutropenic.PlanetaryKim...why is Ibrutinib suppressing the neutrophils??I ask because my husband's neutrophils are at .8 after 2 weeks on Ibrutinib. He is restricted in so many was because of the neutrophenia. WE are praying this changes. He has been neutropenic for 4 months now, after BR chemo treatment of only 4 out 6 infusions.

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My understanding is that my neutrophils may be at 1.2 for as long as I am on Ibrutinib. That is just a consequence of Ibrutinib on some (many?) people. It hasn't been a problem for me, but I am careful about handwashing, and not eating fingerfood when I am away from home.

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Also 1.2 is not considered severely neutropenic. But it is neutropenic. I am thrilled with my success on Ibrutinib. It has literally given me my life and health back, and with no noticeable side effects on a day to day basis. I literally would not know I am taking a drug. Sorry to hear your husband finds it so restrictive. Good luck.

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Thanks for your insight.....looking forward to having our life back....with all the flu and colds around, he has been very restricted....but hoping to find this therapy works as chemo failed. Glad to hear it is working for you....gives us hope!!

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Hope all goes very well for your husband. Keeping you both in my prayers!

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Hi Amb23,

I’m sorry your husband’s remission wasn’t more longlasting, and can understand your interest in people’s experiences with Ibrutinib.

When I started Ibrutinib, I was told that about 70% of patients have no problems at all. And amongst the other 30%, some get side effects that wear off in time, some get side effects that they learn to live with, and about 5% get problems that mean they stop the drug. Not sure where he got those figures from, but I found it somewhat encouraging.

Below are links to the posts about my experiences with Ibrutinib – which I started 6 months ago. Please remember that these things are VERY variable and your hubby may well get none of these problems. .

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Re lifestyle tips and recommendations – now you’ve got me thinking…

1) I guess I’d say “Don’t assume anything, Hope for the best but don’t be too dismayed if hubby has some problems, especially in the first few months. Most problems pass in time.

2) For me the crippling joint pains were the worst thing. They came quite soon after starting the Ibrutinib and I wasn’t expecting them as I’ve never had joint problems before. My hands and feet also became swollen and puffy. I put on a lot of weight due to fluid retention and had to take my wedding ring off. There was no way I could drive the car, and even typing was difficult.

But after 5 or 6 weeks the extra fluid suddenly drained away! I put the wedding ring back on and went back to my previous weight. The joint pains also faded away (until recently, but that’s a different story).

So, if hubby gets joint pains, hang on in there – they usually go away in time.

3) I got lots of little cracks and sores on my fingers - around my cuticles and under the back of my fingernails. They were painful, they bled, and took a LONG time to heal. Sometimes I had little plasters round about 5 of my 10 fingers! But since using “O’Keefe’s Working Hands” hand cream, they’ve been much better. (I’m sure there are other creams that would work as well). I rub it into my hands and feet, especially concentrating on the ends of my fingers.

So, I’d advise your husband to get some good moisturising cream. He might like to start using it before any problems arise.

4) I started taking Biotin capules when I got the skin problems, as others had recommended it on this site. So, that may have been a factor in the healing of my hands. Your husband could talk to his doctor about this option.

5) As well as cracks in my fingers not healing well, I found that a tiny cut on my chin, that I’d expect to heal in days, kept re-opening and bleeding again. It took weeks to finally heal.

Ibrutinib can delay healing and cause problems with bleeding as it “thins the blood”. So, tell hubby to take care when shaving – try not to get any cuts or scratches.

6) I started getting blood stains on my hanky whenever I blew my nose. Sometimes I got minor nose bleeds. Most of the time my nostrils had crusty bloody-stained gunge in them, which felt very uncomfortable and made me want to pick at them (Yes I know – gross!). Stuffing Vaseline petroleum jelly up my nose helped, but didn’t totally solve the problem.

However, after mentioning the problem to several doctors who just shrugged it off and told me not to pick my nose (!), I found the answer! A different doctor took me more seriously and prescribed “Naseptin Nasal cream”. A few days after using that cream – no more nose bleeding! Back to a nice moist, comfortable nose! I'd almost forgotten what that was like!

7). I was getting nasty foot cramps earlier in my CLL journey but they stopped dramatically after my spleen ruptured and was removed. However, with Ibrutinib, they came back.. Sadly they are still a problem

Cramps are more likely if we get dehydrated and lose the right balance of salts in our blood. So, drink plenty of fluids. Magnesium tablets help some people (though they never helped me). I find that sudden changes of temperature can bring on the cramps. So I wear bedsocks, and don’t put my feet directly onto a hot water bottle or beanbag.

8) I’m sure you’ve been warned about atrial fibrillation. I had one episode of that in my early days of ibrutinib but the medics reckon it was prompted by my anaemia and me overdoing things. So, maybe hubby should take it easy in the early weeks of Ibrutinib – not the time to start training for a marathon!

9) Mouth ulcers come and go. They were worse in the early weeks, but are much better now. I was given special mouthwashes for them, but I found homemade salt solutions helped just as well.

10) A couple of months ago, I started to get a rash on my face. First it was blotches on both my cheeks, then the blotches expanded and multiplied. They became red/brown in colour and feel rough to touch. Sometimes I glance at myself in a mirror and wonder what people think when they see me looking like I’ve got the plague! My friends say they don’t notice it much, but I think they're just being polite...

A doctor prescribed E45 wash, but it hasn’t helped. The rash continues to spread and is getting near my right eye. I’m now using another skin cream now (Zerobase Emollient cream), and it seems to be helping. Again, I believe it’s important to keep the skin well moisturised.

11) Then two weeks ago I pulled a muscle. (Not the fault of Ibrutinib - I was trying to stand on a chair to reach something from a high cupboard and suddenly something “went” in my leg/back). The pain gradually got worse, spreading from the leg to all round my back. My GP diagnosed a torn muscle and prescribed strong painkillers. Even with the painkillers, I can still only hobble around awkwardly and my lifestyle is severely limited. No more walks in the Peak District, no more scrambles up Burbage rocks.

My specialist nurse reminded me that torn muscles can cause internal bleeding which takes longer to clear up when someone’s on Ibrutinib. :-(

I know that Ibrutinib is stopped before and after any surgical procedures, because of problems with bleeding. Just hadn’t thought of it happening with a small internal injury like a pulled muscle. Nothing I can do about it except keep on with gentle activities, and wait.

So, try and avoid all injuries, especially pulled muscles when climbing on chairs!

I’m going to the hospital this Friday and will ask about reducing my dose of Ibrutinib, even if it’s only for a short time, to let the rash calm down and the pulled muscle heal.

12) I’m sure your husband has been told about avoiding certain foods with Ibrutinib. No grapefruit, grapefruit juice, Seville oranges and anything (eg marmalade) that contains them. Some people find it better to avoid all citrus fruits. Sometimes we forget that there may be grapefruit juice hidden in other things such as mixed juices, fruit salads, even Christmas pudding! i had a lot of Christmas pudding last Christmas then noticed marmalade in the recipe!

As time passes I’m hearing of other things that might be better avoided with Ibrutinib, such as pomegranates, Kiwi fruits, certain medications and certain supplements (eg St Johns Wort). So, keep your eyes open for any new developments.

13) Stomach problems. I've been on medications against stomach acid for many years, but it was well controlled with Ranitidine. However, a couple of months after starting Ibrutinib, I was getting discomfort/pain a couple of hours after meals. It didn't feel quite like the old stomach acid problem, and a gastroscopy showed I had biliary gastritis, caused by reflux of bile into my stomach. It's probably partly due to having my gall bladder removed last spring, and has probably been aggravated by the Ibrutinib. No easy answers - I just have to be more careful what I eat . I've increased my dose of Ranitidine and also take Gaviscon more often.

I hope this doesn't sound too offputting. Most people don't have any problems at all. :-) But you asked for tips for dealing with possible side effects, so I've spilled it all out..

Best wishes,

Paula

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Great advice Paula!

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thanks Paula, for all the good ideas......you are a real warrior!

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Thank you for taking the time to go into the details for me. It is helpful to know of other people's experiences- the hardships as well as the easy ones.

I hope all goes well for you.

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