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[LinnyPooh]

Hello.I was diagnosed with CLL in 2017. No treatment needed until labs and scans suddenly went haywire in April 2019. Was started on Imbruvica at that time. It has really done it's job. My most recent tests showed mostly normal. However, doctor said latest research indicated that if you tolerated the medicine well, advise to stay on it at least 2 years. My side effects are relatively minor-cramps in my thighs (never had cramps there before!), cramps in one of my thumbs (pulls thumb inward and locks there for a minute or two), and my hair is falling out slightly but is really frizzy!. But if that's all I have to complain about, I feel very fortunate. Does anyone else have these symptoms?

[Kokobean]

My husband has had weird cramps like that, but less as time goes on. He doesn’t have hair so we don’t know about that. Otherwise he is tolerating it well.

[LinnyPooh in reply to Kokobean]

Thank you. The thumb cramp is the strangest!

[seelel]

The thumb cramp may be co-incidental. There is a condition called 'Trigger finger' that can manifest on fingers or thumb. There is a tendon that runs down the length of the thumb and passes through a small sheath at the base of the thumb. This sheath can become inflamed and interfere with the normal movement of the tendon. I had it a year ago and I'm not on any treatment. The inflammation can be caused by repetitive movement or unusual pressure or the like.

The medical treatment is a shot of corticosteroid at the site of the inflammation. The home remedy is a turmeric poultice around the area. The injection is instant. The poultice takes about 3 days of application. After that it takes about 6 weeks for the last remnants to disappear.

Whether or not the Ibrutinib has caused the condition, I have no idea. But I've never heard it mentioned by anyone before now.

[Accordion in reply to seelel]

Agree! Certainly sounds like trigger thumb. I worked for 35 years in a handsurgery department, it is very common. I would go for an injection (after consulting a hand specialist) Good luck!

[Accordion in reply to Accordion]

Adding: of course I would go for the tumeric as suggested by seelel while waiting for seeing a hand specialist! Never tried it, but any antiinflammatory seems reasonable.....

[AdrianUK]

Welcome to the group! Sounds like your doctor is giving you good advice about carrying on the drug. Since it rarely gets people to the level where there is no detectable disease left, most people stay on this drug for as long as they can tolerate it or until it stops working. It’s very possible however that sometime in the next couple of years or so that advice might change to instead after someone has been on ibrutinib for quite a while (maybe years?) switching to or adding Venetoclax in order to finish the job off, get to the point of being able to stop Both drugs and hopefully in some cases having such a long remission that it should perhaps be called a cure.

The evidence is not yet clear cut however about if that really is the right thing to do so think of Ibrutinib as putting your illness into suspended animiation whilst doctors are still figuring out what is the best way to attempt to eradicate it. Things are moving fast in the treatment of CLL. You are in the right place to learn all the exciting developments as they happen and to hear wisdom and experiences of others.

Hope you continue to feel better and better.

[peggyp14 in reply to AdrianUK]

I love being on this forum. The advice and experiences everyone shares is wonderful.

[cajunjeff]

I am on ibrutinib two years now and am not having any symptoms you describe. It sounds like you are doing great.

I wonder if you misheard your doctor about his research advising we should stop ibrutinib after two years if our labs are normal. I have never heard of any such study. People rarely get mrd negative on ibrutinib alone. So far as I understand it, the current thinking is to stay on ibrutinib until it stops working.

Now I have heard of people adding venetoclax and then stopping if they are mrd negative in blood and marrow. I would sure be interested in any study saying we can consider stopping ibrutinib after a couple years.

[AussieNeil Partner Administrator in reply to cajunjeff]

Agree. In an early trial, only about 10% on Ibrutinib got to MRD negative after FOUR years.

[cajunjeff in reply to AussieNeil]

Right, and even for those chosen few who get mrd negative on ibrutinib, I am unaware of any consensus opinion they should stop taking it. I think doctors are deciding that on a case by case basis. My guess would be those who are mrd negative and quit would enjoy some period of remission. But in the long run would they be better off having stayed the course? That’s what I think they are trying to figure out.

Now I have heard of people going off ibrutinib due to side effects and having some period of remission where their Cll doesn’t come roaring. back. I have not heard of anyone stopping after two years when they were tolerating Ibrutinib and doing well on it.

[LinnyPooh in reply to cajunjeff]

Now I'm questioning what I heard. Following the positive outcome of my tests, I anticipated being taken off the meds, because when I started he said if all goes well, may only need to be on it a year. Now he says that latest research states if no problems, should stay on it at least a couple of years. What I got from the conversation with the doctor was that if everything was okay I can go off of it after 2-3 years,but keep in mind that I may have to go back on it if things change., Now I'm confused. I can't imagine having to be on it forever😥

[LinnyPooh in reply to cajunjeff]

Maybe Dr. Thought I wasn't ready to hear that I'll probably be on it forever! My next appt is in 4 weeks with his nurse practitioner. What questions should I ask?

[Sierrastar in reply to LinnyPooh]

You should consult a CLL specialist.

I am also on Imbruvica .

Best wishes, Elizabeth.

[peggyp14 in reply to LinnyPooh]

Discuss it with your doctor, and make a decision with him.

You will get such great information from this forum. Pay attention to the posts. As you read them more and more, you'll recognize that no 2 people's journey with CLL are the same.

You can learn so much from all the people on this forum. Reading about everyone's experiences are great. BUT the more you read, the more you will see how unique each one of our experiences with CLL are.

Gain all the information and insights you can from this forum.

BIT when it finally comes to making your decisions make them with the help of the person who knows you the best, your doctor.

[LinnyPooh in reply to peggyp14]

Thank you peggyp14. I agree, this forum is a wealth of information it gives a better perspective on the disease.

[AdrianUK in reply to LinnyPooh]

I would ask if your doctor is involved with any clinical trials with CLL. And if not, who they would normally refer you to if at some point in the future you'd ever want to be involved in a trial.

This will help you know if he or she is actually a CLL specialist and if they are not whether they would "play nicely" with one. Or if they would get offended at the mention of that option.

For sure, you would want to get advice from a CLL specialist before making any changes to your current treatment plan. My own personal hunch is that there is not going to be affordable for any health insurance to simply keep people ion Ibrutinib forever if and when alternatives become much clearer.

Honestly I would expect as soon as data becomes clearer about the whole "add venetoclax" option this will become the default once people have been on ibrutinib for a while. In fact I suspect that in many health economies ongoing continuous Ibrutinib will become second line to venetoclax plus obinituzimab/rituximab (VO or VR) for financial reasons. (i.e. people will only be given ibrutinib if VO or VR do not work. Certainly if you have to contribute to drug costs yourself then that is an option (due to the prospect of time limited treatment followed by the hope of a LONG drug free interval) that will be attractive to you financially. Right now though we do NOT yet know which is the best option clinically.

And so for now, honestly, since the data is NOT yet clear so if you are doing well on ibrutinib it makes sense to keep going with it unless your doctors advise you differently for a reason to do with your medical situation.

I expect that soon there may be clinical trials recruiting patients in exactly your situation (i.e doing well on Ibrutinib but not with the disease abolished) to then see if it is possible and advisable to convert a good response into a complete remission with MRD-undetectable status.

There is a theoretical suggestion that preparing someone with Ibrutinib to drive all the CLL out of the lymph nodes and to hugely reduce the overall tutor burden over at least a year and possibly more might well be a great preparation to then go for such a deep remission that some people will have a cure.

Some people are already doing this strategy but it is one of those things that there is no hurry over as we don't yet know for sure it is the right thing to do. Many doctors quite believe rightly that it is often not a good idea to change something that is working.

A true CLL specialist will be able to advise you much better about your own specific situation about what is the best thing to do for you as an individual.

Many people on here see CLL specialists for key decision points and a more local doctor to manage your care in between such points. I suggest you look into the same if it turns out your doctor does not run clinical trials in CLL (NB in my view it is still good to get the advice of a CLL clinical trialist even if you don't ever want to be in a trial yourself as they have better experience of using the newest drugs when they are released having helped to run the trials beforehand.)

[LinnyPooh in reply to AdrianUK]

Thank you. You are very knowledgeable.

[cajunjeff in reply to LinnyPooh]

Linny, you might want to write down any questions you have. I would hope the issue is not that your doctor told you that you would only be on ibrutinib two years to appease you. We need accurate information from our doctors, not sugar coated.

You might ask your doctor what his/her long term treatment plan is for you. What I think the answer might be is to keep you on ibrutinib until it stops working or until ongoing clinical trials answer the question of when it’s safe to stop ibrutinib and when and what drugs might be added to ibrutinib to induce a durable remission to get off all drugs.

None of us like the idea of being on ibrutinib forever. Nor do I think we will be, I think most likely a drug like venetoclax might be added to get us in a remission or possibly even cure us.

While no one wants to be on a drug forever, think about other people who have all sorts of other cancers and how many of them would rejoice at the notion of controlling their cancer with a single oral pill a day. Yes having Cll sucks. But for me if the outcome of my Cll is I get to less a relatively normal life taking a pill a day, that ain’t so bad in the grand scheme of things.

Right now you are in the lucky group of us that can take and tolerate ibrutinib. That’s really great news for you.

[LinnyPooh in reply to cajunjeff]

Thanks Cajun Jeff. I agree I am very fortunate to be able to tolerate the medicine. And I know that I'm very fortunate to have Something that works.

There are many people suffering much more than I. I will sit down and make a list of questions before I go to my next appointment. Thank you for your feedback.

[cajunjeff in reply to LinnyPooh]

Thanks Linny. I didn’t to be “that guy” who tells someone who lost one arm that they are lucky to not have lost both arms. I just wanted to convey to you being on ibrutinib long term and having it work isn’t such a bad result.

[LinnyPooh in reply to cajunjeff]

Jeff, You aren't "that guy". I've always felt I was very fortunate things are going so well.

[LinnyPooh in reply to cajunjeff]

Cajun jeff. Wanted to update you regarding stopping Imbruvica. You were right. At my next appointment following this post, i questioned my doctor. He said as long as I can tolerate it, I'll probably be on it the rest of my life.

Thanks for the info, which prompted me to ask more questions

[Panz]

I have had issues with a double trigger finger on my right hand...had surgery as they permanently locked. Then I had severe pain in both thumbs....I ended up with injections that worked on one thumb but not the other....I ended up having Basal Thumb Joint Arthroplasty on each thumb plus carpel tunnel on the right hand.

Abused my hands all my life and had to pay the price.....but my hands are pain free now and I never thought I could ever attain that!

Non of these issues had anything to do with me having CLL for now going on 31 years.

Panz🙏☘️💕💗🌞

[peggyp14]

Although I might not need to start treatment until the end of the year, thank you for this post!

Tells me I don't have too much to worry about when the time comes for me to start.

[Hidden]

Hi, I can empathise. Started Imbruvica June 2019. All results within normal ranges by January this year. The decision was taken by my Spanish medical team to keep me on Imbruvica as I am tp53 so more vulnerable to developing other cancers. Although I had cramps before starting Imbruvica they were nothing like those I am experiencing now. I have taken to wearing fingerless gloves, which seems to help with the cramps in my hands but I often wake up in the night with cramps in both legs. I accept them as a minor price to pay, and they are far outweighed by my once fine, absolutely straight hair, having become thick and wavy!

[JeannineMarie]

LinneyPooh I have trigger finger and carpal tunnel. I know the pain associated with the condition. I have had trigger finger release done surgically on 2 fingers and had the injection in the third. Recommend that you try injection first. The hand cramps were totally unrelated to CLL/SLL. I would wake up in extreme pain with my hands almost cramped into a fist and have to pry the fingers open. Finally after a 18 months I gave in and saw a Dr. .. I recommend seeing a Dr a lot sooner than I did! You don't have to live with pain in your hands!

[LinnyPooh in reply to JeannineMarie]

Thanks JeannineMarie.It doesn't happen very often, thankfully.

[bigunwill2]

My doctor gave me gabapentin for the cramping. I also have so mitts that I warm in microwave that help. Leg cramps I drank a little dill pickle juice.

[Big_Dee in reply to bigunwill2]

Hello bigunwill2

I take 1/2 of 250 mg magnesium tablets for leg cramps. I started out at 400 mg, then down to 250 mg, then 1/2 of 250 mg tablet due to diarrhea. I have not had leg cramps for over a year. The magnesium also helps with vit D absorption. I would discuss with doctor before taking anything. I was tested for vit D level before taking anything. Blessings.

[Catnap7]

Hi I am on Ibruitinib and Venetoclax

in a 2 year trial Luckily In Jan I got MRD negative

I still get cramps in my feet all the time and they come on when I am sitting. I just get up and walk around and they go away.

Movement and exercise always helps for me I also had a lot of hair falling out with my drugs but not so much anymore. Side effects can be tough but this site has lots of good advice. Take care

Catnap7