stopping ibrutinib after 5 years

[Prettywombat]

hi - just wondering if anyone else has stopped ibrutinib and how things are going for them? I stopped ibrutinib 12 months ago because of severe daily muscle and bone pain . I’m feeling fine and blood counts are still very good - I’m just curious to how long this might last - I’m wondering if the treatment I have had has pushed me back in the W&W phase of Cll

[CaptRon1976]

Interesting question. Oncologists are moving away from the term “watch and Wait” and are now calling it “Active Surveillance”. During the time you are not taking CLL treatment you would be back in that category while being monitored for signs of recurrence.

Recently, Dr. Brian Koffman referred to a new study where Ibrutinib patients are being taken off Ibrutinib after 6 years and many like you are doing well of the medicine for a year or more.

Ron

[Prettywombat in reply to CaptRon1976]

That’s really encouraging- thank you Ron

[peacefulandcalm]

hi, can I ask you what severe muscle and bone pain feels like?

is it in certain places or all over and can you tell where?

I need to get tested for cll, and have had all over body pain, what you just described for over a decade.

Been diagnosed with fibromyalgia since it is not one specific place.

I am sure someone here will have good advice and feedback to your question...

Actually, mine just feels like a nebulous poisoned feeling and tons of unbearable pain feeling like floating all over the body cavity; I don't know what others pain feels like?....I don't know, but good you are doing well and sending good wishes...xx

[Newdawn Administrator in reply to peacefulandcalm]

Hi peacefulandcalm,

I’m concerned that in your search for answers to your generalised pain that has been diagnosed as fibromyalgia, that you’ve seized on CLL as a possibility. This seems to have been an issue for you for more than a decade from your posts on other sites and frankly it would be hard to imagine that your blood tests wouldn’t have revealed blood cancer issues during this time if they were present. It’s also hard to imagine that over a period of 10 years, CLL wouldn’t have manifested in some other way requiring treatment.

Prettywombat is asking about the arthralgia and myalgia attached to taking very powerful BTK cancer meds over a period of time which is quite different to generalised pains which may have a thousand different reasons, many of which are not sinister in origin. The pain you describe certainly sounds like fibromyalgia. Extreme myalgia and arthralgia isn’t very common as a symptom of undiagnosed CLL. What makes you think you need to be tested for CLL? Is your white cell count very elevated? Are you aware of any rise in your lymphocyte count or enlarged lymph nodes?

I’m always concerned when people join from other sites and begin to identify with symptoms that can be present in so many other conditions, none of which are cancerous. Anxiety can take us along avenues that we should never venture down I’m afraid.

CLL is diagnosed by a flow cytometry test which is a simple blood test but a GP is unlikely to refer for one (through a haematology dept) without some compelling clinical reason.

I have severe systemic pain from spinal stenosis and arthritis but it’s separate from my CLL. The two don’t have an automatic connection apart from as a treatment symptom.

Best wishes,

Newdawn

[peacefulandcalm in reply to Newdawn]

thank you....

[LeoPa in reply to peacefulandcalm]

What's your weight and blood pressure? Any problems on those fronts?

[Prettywombat in reply to LeoPa]

I had put weight on which I blamed on the drugs (I would though 😀) but now I have actively lost some weight - exercise and diet. My blood pressure has increased and was borderline in the last few years of treatment but has now spiked requiring drug treatment which is disappointing.

[LeoPa in reply to Prettywombat]

🙂 you got a notification of my comment because it is your post, but my question was directed at @peacefulandcalm.

[peacefulandcalm in reply to LeoPa]

gained 40 lbs, need to see pcp and get everything checked again...do blood work again

[Zia2]

I took 3 different Brutinibs for 1.5 years and stopped for the same reason (and more). December will be two years without tx. I have labs every 3 months and they’re progressing in wrong direction but hoping to make it far into 2024. CLL doc thought two years was possible for me. Hoping to do V+O next

[Prettywombat in reply to Zia2]

Thanks for sharing - so far mine are going in the right direction but that can change I know - it’s still early days for me- sorry to hear yours are being naughty - V+ O ?

[Zia2 in reply to Prettywombat]

Thanks. I didn’t take it long enough and only had one maybe two set of labs that were normal so it was expected. Progression was almost immediate but I work full time and just couldn’t take it any longer. Venetoclax and Obintuzimab, 12 month tx only hopefully 🙏

[pbaddi in reply to Zia2]

Hi, can i know what are 3 different Brutinibs you took?

[Prettywombat in reply to pbaddi]

I only took one - ibrutinib

[Skyshark in reply to pbaddi]

There are three 'brutinibs. First generation Ibrutinib (Imbruvica). Second generation Acalabrutinib (Calquence) and Zanubrutinib (Brukinsa).

In order of effectiveness, Zanubrutinib, Acalabrutinib, and Ibrutinib.

In order of least off target response and best tolerated, Acalabrutinib, Zanubrutinib, and Ibrutinib.

If one doesn't suit, try another, although they all target BTK receptors they bind to the recptor in slightly different places and have differences in off target locations.

[Zia2 in reply to pbaddi]

I took Ibrutinib, Acalabrutinib and Zanubrutinib. If there’s a side effect/adverse reaction I had it. 🤷🏻‍♀️ There’s a 4th we discussed and decided no.

[Prettywombat]

thanks - I believe venetoclax is good- good luck.

[KrisBren01]

Hi Prettywombat, I was on Flair trial with ibrutinib for 6 years. I was then on watch and wait, I managed 17 months then my numbers were starting to be naughty. I managed to get to 31 months post treatment then started 2nd treatment on V&R 9 weeks ago today. So far so good, massive lymph nodes have all but gone. Good Luck in your onward journey and long may you remain on W&W Sue x

[Prettywombat in reply to KrisBren01]

That is the trial I was on but only managed 5 years- I would have stopped at the end of the trial as you did. Thank you for posting - it is good to know what might lie ahead and that should I need it there is a good treatment available.

[Graham64 in reply to KrisBren01]

Hi KrisBren. I just came to the end of Flair and stopped ibrutinib. Can I ask you how long it took for the lymph nodes to swell up again? Graham

[KrisBren01 in reply to Graham64]

Hi Graham, lymph nodes began swelling approx 24 months post stopping treatment but all average size except a tennis ball size one under arm. 7 months later started 2nd line treatment. Sue

[Graham64 in reply to KrisBren01]

Many thanks. I'm not looking forward to all the lumps coming back again

[Pageboy]

My doctor and I are watching this step people are now beginning to take - coming off BTKi’s - with interest. I am on Acalabrutinib and have also had 6x Obinutuzumab. Coming up for three years on the Acalabrutinib. I have asked about coming off for a while which my doctor is open to. But he suggests- if nothing happens in the interim - five years on the Acalabrutinib then see how it goes. I only take 2 tablets a day, have no apparent side effects and yet the idea of coming off is appealing. We’ll see. It would be good to hear from people who have come off .

[Prettywombat in reply to Pageboy]

Will let you know if and when anything changes.

[camper2]

interesting- I shall watch your progress with interest Prettywombat, as will others on the Brutinibs. keep posting!

[Prettywombat]

thanks

[Stacky66]

Hi, I’ve recently been invited on a trial to come off Ibrutinib, 50/ 50 split on who comes off and who stays on , been taking it 6 years, good luck

[Aerobobcat]

Hi Prettwombat, I don’t know if my experiences will be of much value to you. However in my previous posts I have raised the issue of side effects of my medication and specifically Ibrutinib.

Breifly, I already suffered the condition Behcets Syndrome since childhood and this clearly predated my CLL diagnosis.

I have been on Ibrutinib for 10 years. I was referred to the Ibrutinib trial at the Royal Marsden hospital on compassionate grounds due to a poor responses to previous Chemotherapy and a much enlarged spleen.

I did ask early on in my trial to stop the treatment as I felt it was making all my existing, joint and muscle pain symptoms worse.

In truth I had been so unwell in the years leading up to my referral to the Marsden that I was ready to throw in the towel, so glad I didn’t though.

At this moment I have a new haematologist and she is of the opinion that my 10 years on this drug does need re-evaluating and she knows my own feelings and wish to stop the Ibrutinib, especially now that I have cardiac issues as well.

I am due to see her again in 2 weeks so I will then have a better idea of her intentions and of course the results of all the recent scan’s and tests etc.

Lastly, I should say that in terms of my CLL the Ibrutinib has worked well for me but I also believe that my ongoing IVIG infusions have successfully put a halt to my hospital admissions, 15 in all prior to this treatment.

My regards and best wishes.

Aerobobcat

[W00dfin]

Interesting concept of returning to WW. My hematologist stopped Ibrutinib 4 years ago because I developed afib as a side effect. My counts were all in normal range except for platelets and they went normal after stopping Ibrutinib. Hematologist said he would follow me on no treatment (“active surveillance”?). I still have to get IVIG every 8 weeks but everything else is going well.

[LynnB1947]

I began taking ibrutinib (IBR) combined with rituxan (R) in April 2014. After 9 years, I stopped ibrutinib in March 2023. So, I've been off of IBR now for about 8 months. I am unmutated & 11Q & 13Q, diagnosed with SLL in October 2013. My 1st treatment was revlimid & rituxan but it was not working so switched to IBR+R after 3 months. The R was stopped in Feb 2015.

I see Dr. Farrukh Awan at UTSW-Dallas, and he was supportive of me getting a "drug holiday," and he predicts I'll go 3 years or more before treatment is needed. It's great to have strong nails, again, and I don't miss the usual muscle & joint problems associated with BTKs.

I also have been diagnosed with idiopathic pulmonary fibrosis (IPF) which means lung problems of unknown cause. I am taking Esbriet & after 8 months the pulmonary tests show a reversal of the decline of IPF. Some opaqueness was noted in my lungs in 2013, and it just began progressing so I changed CLL specialists in order to get additional support with IPF being my primary concern.

Anyway Prettywombat, I am hopeful that you will have a long an enjoyable "drug holiday," and that resumption of treatment is years away.

LynnB

[Prettywombat in reply to LynnB1947]

Thank you LynnB for sharing your experiences and for the encouragement

[Rookie]

I was diagnosed in 2014 and began treatment in 2016 with ibrutinib. Had some liver issues at the beginning of treatment and eventually took my ibrutinib down to 1 pill every other day and had great results in my CLL counts but liver enzymes were still high. Doctor decided it may be the shingles pill that they started me on at the same time as the ibutinib. We stopped that and my liver enzymes returned to normal quickly. yay!! I am still on 1 pill every other day and my counts have been normal for 7 years. My oncologist is talking about stopping it all together. The only side effect I have is (my nails of course) I now have to take a high blood pressure pill. Which annoys me because I try hard to watch my weight and what I eat and exercise daily. But I do feel 'safe' while on this small dose and don't know if I want to give up that feeling.

[Zoethedog in reply to Rookie]

Wow Rookie that’s so good to hear. I’m going to do the same and see how I go over 6 months….a drug holiday sounds so good for the soul!!! I be been on one tab a day for 4 years and got really good bloods. Thank you for your post

[22011]

I was on W&W for about 9 years as my lymphocyte counts meandered upwards. When I had a sudden spurt and enlarged spleen I started Ibrutinib at the 240 dose. It was horrible, mouth ulcers, rashes and bleeds all over. I was taken off for a week and then started the 120 dose.The side effects were much milder and it worked amazingly well, my numbers plummeted. After one year of nearly normal numbers and still having annoying side effects I asked to stop taking it. I've been off for 2 years now and am seeing the very slow progression I had early in the disease. No node involvement except for one in my neck that has never gone away. If I get to the point that I need treatment again I will opt for the lowest dose, 70 mg, as my hematologist says I am "exquisitely sensitive" to the drug. IMHO this drug should be started at a low dose and titrated up as needed. Someone previously mentioned that the reaction depends on your weight and smaller women such as myself can start at a lower dose. It surprises me that after all these years of experience doctors don't do this, and also keep people on the drug longer than necessary.

[jkl700]

Am I too late to engage in this discussion? After 5.5 years on Ibrutinib I have been asked to join a trial of stopping it. I first started on 420 mg then after 2 years went down to 280 and anbout a uyear or so I have been on 149 mg. All my numbers are looking good. But I feel stiff, muscle pain and depression? I can't get motivated. I had asked to take one pill every other day, but the consultant suggested that I take part in STATIC? trial where I will stop totally but be monitired. I would like to stop and see if my mood and muscles bgin to relax. I suppose if it does come back, one can easilyh go back on it? I am anxiously waiting for response as I should make up my mind within a week.

I will try to post this as a stand alone question under my post.

[Prettywombat in reply to jkl700]

Hi jk1700

I stopped my ibrutinib Approx 14 months ago - - I simply stopped so no withdrawal period. I did it because of the muscle/bone pain I was experiencing which in my opinion had become intolerable. Unfortunately I am still experiencing muscle/bone pain - it’s not arthritis - I have that in

My hand and foot do know the difference - this is much more acute - It wakes me in the night and occurs following sitting or driving the car- I simply look like a penguin when I try to walk - it gets easier when I have been walking for several minutes - not pain free at all but I don’t look like a penguin.

I really hope that you don’t experience the same thing and that you pain goes when you come off the drug. On a good note my bloods are fine so stopping ibrutinib has not resulted in a flare up as yet.

[jkl700]

Many thanks for your quick response, when you write:On a good note my bloods are fine so stopping ibrutinib has not resulted in a flare up as yet. So after 14 months nothing has come back. that is good news. So it will be worth for me to stop it and see if it helps with my muscles and depression. Thanks again. Blees you.

[Bixilon]

Hello. I thought that my muscle and joint pain would be more tolerable by reducing the dose of ibrutinib, but it did not decrease at all. I started taking a supplement "Centrum woman + 50". (That's what it is called in Argentina) and it was fantastic, but not everything is wonderful, now I am more accelerated and anxious and with a lot of energy. I'll have to opt for what I prefer. Perhaps others have the benefits without adverse effects. Greetings