Ibrutinib

[Deta1961]

Hello .... here I'm again! Still on Ibrutinib, for about 17 months! Had good months, very good ones, without pain or any symptoms of CLL, went to China on a trip..... everything was going very well. About 3 weeks ago pain came again, my both knees give me terrible nights ( get worse in the night, in bed), besides I got an bruise in my ankle. I went to the doctor and I'm taking 10 mgs of Prednisolona every day but not feeling well. My leukocyte went up from 11.1 To 16.5 and the erythrocytes went up from 4.97 to 5.38. My plaquets were 89 and went up to 120..... help! Don't know what's going on, is it normal? My hemo just says to keep on with prednisolona and wait! Nights are horrible with pain.... anyone else like me? After 17 months?

Thanks ....

[Ironj]

I know Ibrutinib is the Drug of choice. That being said I’m starting to question how good it really is. I’ve been reading a lot of people on this forum that are on it or were taken off it for different reasons. I’m on watch and monitor but have said if I ever needed treatment I for sure would go with Ibrutinib over FCR. I’m really questioning if I had to make a choice today what I would go with. I understand some people can’t go on FCR. I’m just confused if the opinion was given to me today I would be very undecided. I wish you the best and hope things get better for you while on this Drug.

Best wishes. John

[Hidden in reply to Ironj]

since you have good markers you have more choices.

[johnl in reply to Ironj]

John, Remember the people that post on this forum are the ones that are having problems the ones that aren't having problems are less likely to post because they have nothing to say so it seems like more people are having problems than actually are. John

[Ironj in reply to johnl]

Good morning John , since you put like that I agree and it makes sense. I would like to hear from people that have been on it for a while with positive results.

Thanks John

[mrsjsmith in reply to Ironj]

Hello I have been on Ibrutinib for 15 months now and only minimal side effects 🤞

Colette

[Doremefasol in reply to mrsjsmith]

did you get a full remission ,or partial?

[Deta1961 in reply to mrsjsmith]

Lucky you my friend i still have my feet swollen and a lot of joint pains especially during the night... don’t know what to do! Looks like everyone says those are ibrutinib effects! Getting confused about ibrutinib taking ou not talking?? I have a hemo appointment on the 6th june and i’m going to talk about it with the doc

[mrsjsmith in reply to Deta1961]

Ladies,

Nowhere near remission, but getting along nicely.

Wishing you the same.

[Big_Dee in reply to Ironj]

Hello Ironj

I had the same questions as you that is why I chose B+R. I was also very aware as john1 that the majority of the people posting here, do so because they are have Ibrutinib issues. Keep in mind that your blood test results and general overall health will have a lot of weight as to which treatment you do. This is the reason I feel best course of action is to get moderate exercise and eat healthy to prepare for treatment. You probably will not get a lot of responds from people doing very well on Ibrutinib because they have moved on. Don't worry this to death, you have plenty of time and a lot of new treatments are in the pipeline. Blessings.

[Ironj in reply to Big_Dee]

Thank you for your reply, I hope the BR give you a very long remission

[AuntHelen in reply to Ironj]

What does FCR stand for?

[Newdawn Administrator in reply to AuntHelen]

FCR explained;

macmillan.org.uk/informatio...

Newdawn

[Deta1961 in reply to Newdawn]

I had cyclophosphamide a few years ago , suppose to take Rituximab instead of Ibrutinib but due the mutation TP53 the hemo changed to Ibrutinib... said that rituximab would not sort any effect on my situation!

[BSMI in reply to Ironj]

John, for my part I’ve been on Ibrutinib for 18 months with great results & no side effects. I was originally very sick & my white blood & lymp counts were 5 times acceptable limits, but returned to normal within 3 months on Ibrutinib & have stayed there ever since.

Having said that I have had other infection problems leading to pneumonia & empyema which needed a major thoracentesis operation to remove fluid from the lungs, followed by an uncomfortable month in hospital. I feel that this was unrelated to CLL & if it doesn’t sound too weird to say - I now feel great except for the ongoing pain, which my doctors are confident is caused by the broken ribs necessary during surgery.

I recently read a post on this site by “Splashes” that says there are more & better follow-ups to Ibrutinib on the way.

So in summary I think in the long run respiratory infections are going to more likely kill me than CLL.

[81ue]

I was on Imbruvica about 17 months with fantastic results and my best numbers ever in that 17th month. Then it failed. At the beginning of this month I had uncontollable fevers from 99-103 and nothing helped, I felt very sick and nauseated and fatigued, I ended up in the hospital 5 days and taken off imbruvica. I was put on steroids and other medication for my stomach since I had ulcers forming (was told imbruvica caused it). I'm now on venetoclax still in the ramp up stages, and also getting rituxan. I'm waiting for results of my bone marrow pathology exam which was sampled last week - I feel good now, so hopefully no transformation. I really had hoped I'd be on the imbruvica for years like I read others were doing, but it didn't last for me.

[Hidden in reply to 81ue]

b-pll ers like us have lousy markers. I have no idea how long it will work on me either. however we have no choice since we can't use chemo. it's either specialty drugs or stem cell transplant

[Deta1961 in reply to 81ue]

Hope you feel better now... I can’t use chemo, TP53 mutation!!! No other choice besides Ibrutinib according to the hemo.

[Splashes in reply to Deta1961]

I'm Tp 53 as well and on ibutrinib for 27 months feeling fantastic. My oncologist assures me when and if ibutrinib stops working there is another pill that has been approved for treatment and when and if that stops working there is another pill. He told me to expect at least five years of good life and by then there should be more treatment (T-cell) approved for high risk CLL. Be blessed and keep well.

[Hidden]

prednisolone by itself will wreck your blood readings. did you have knee issues in the past?

[Deta1961 in reply to Hidden]

No I didn’t Ivotedfornixon ...

[Deta1961 in reply to Hidden]

That blood counter was taken before starting prednisolone .. the next one will be in june on my next

Hemo consultation

[Benny12]

That bruise looks awful. I’ve only been on Ibrutinib for 2 weeks & I certainly wouldn’t be prepared to wait.

Actually I have a bruise in that place but nothing like that, a few blood spots & also my knees are giving me problems.

I’m prepared to wait at the moment as it’s fairly minor & early stages but with all I’m reading on this site, like Ironj, I’m questioning whether it’s a good drug.

I hope it improves for you soon.

Good luck

Benny

[Smakwater]

When you say you are seeing the doctor, is the doctor a CLL specialist?

JM

[Deta1961 in reply to Smakwater]

Yes she is a very good haematologist, one of the best in this area

[Smakwater in reply to Deta1961]

Very Good,

Then we'll stay on topic with this post.

Hope you get some useful feedback,

JM

[Virgo10]

My pain was worse at night also. Wish I had stellar advise for you! all I can say is that , having gone through this, feel your pain!

[larrymarion]

I've been on ibrutinib for 5+ years. First six months were tough with virus activation--I suffered with cocksakie virus, with mouth sores. took 9 infusions of gamma globulin to get rid of the virus. then relatively smooth sailing. typical ibrutinib side effects are less aggravating than FCR or other traditional chemo. side effects include joint and muscle pain, brittle finger and toe nails, gastro intestinal tract issues, etc. all manageable. if muscle pain gets excessive try magnesium pills, for example. note that about a third of ibrutinib users develop resistance--it stops working. typically happens within 18 months of starting the therapy. if resistance happens then docs normally shift to venetoclax. good luck.

[Deta1961 in reply to larrymarion]

Hope so.... i’ve been on Ibrutinib for 17 months

[64lusso in reply to larrymarion]

I'm 67, CLL diagnosis in 2012, progressed very slowly for 4 years then went nuts and I got severely anemic. Fixed that with a month of Rituxan followed immediately by a six month course of Bendamustine/Rituxan along with starting ibrutinib. I'm 25 months on it at this point and blood numbers have been excellent since completing the B/R course in 11/17. I have the 11q deletion. I have most of the typical annoying symptoms, wimpy nails, split finger skin in the winter also bruise easily and more susceptible to sun exposure than I used to be. Oh yeah, red wine leaves a very flat taste in my mouth these days---had to switch to Gin and Tonics!

[Bsv39]

Hi there! I am exactly like you. I have been on IB for 6 months with skeleton pain and ugly bruising. I have been on steroids for 2 weeks and the stiffness has gotten better but my legs at night really give me fits. The WC rose but has been falling as my last appointment. Not feeling great but hopeful. Prayers. Brenda

[Newdawn Administrator]

Hi Deta,

I’ve been on Ibrutinib just over 2 months and the side effects have been varied, painful and plentiful including bruising like that. I’m viewing it as temporary collateral damage for the eventual goal. The concern for you is obviously the deteriorating blood levels except the platelets are improving which is good. Could very well be an infection. Did you perhaps pick something up in China?

I wouldn’t suggest this as a long term solution but when I was in hospital this past week they gave me a small amount of oramorph that really eased the severe joint pain. I wouldn’t take it regularly however but ask your doctor about pain relief.

Best wishes,

Newdawn