SO I'M NOT CRAZY

[IAMSUEBW]

THANKS TO ALL OF YOU FOR CONFIRMING THAT A PART OF IMBRUTINIB TREATMENT DOES RESULT IN WEIGHT GAIN REGARDLESS OF WHAT THE DOCTORS, DRUG REPS AND PHARMACISTS SAY. I HAVE BEEN TELLING MY DOCTOR THIS FOR SOME TIME AND NOW YOU HAVE CONFIRMED MY SUSPICIONS. SINCE THE DRUG SEEMS TO BE WORKING, GUESS I WILL HAVE TO PUT UP WITH THESE SIDE EFFECTS.

I DO HAVE ANOTHER QUESTION. HAVE ANY OF YOU WHO MIGHT BE ON IMBRUVICA HAD TO REDUCE YOUR DOSAGE FROM 420 (3 PILLS) TO A LESSER DOSAGE? IF SO, WHAT EFFECT HAS THIS HAD ON YOUR CONDITION.

[Bubnojay]

Hi Sue you may get more replies if you restrict your post to our community.

All capital letters in your post imply you are shouting.

Sorry I can't respond appropriately stil w&w.

Best wishes

Bubnjay1

[SycamoreN]

I've had my dosage of Ibrutinib reduced from 420 mg (3 pills) to 280 mg (2 pills) recently. After being on the drug for almost 3 years, and doing very well on it, I started having palpitations last November. My haematologist took me off Ibrutinib altogether temporarily pending an investigation by a cardiologist. I became very ill within 4 days with a very high fever, shivering and shaking, which was brought under control after 3 days in hospital on IV antibiotics. I resumed taking Ibrutinib last December on a reduced dose and since then the palpitations have lessened andI seem to be doing well so far.

[Que-sera-sera in reply to SycamoreN]

I'm trying to understand your post; you said you were taken off of ibrutinib and within 4 days you became ill....so, was that due to stopping your ibrutinib or alltogether separate?? And if I may ask, what were you treated for with antibiotics?

I'm intrigued because I've had like a "chest cold" type thing for quite a while now and it wont go away...so was wondering if i might have a similar albeit lighter version of what you had because some days I feel like it could turn into pneumonia or something!

[SycamoreN in reply to Que-sera-sera]

Hi Que sera, yes I became ill due to stopping Ibrutinib. My neutrophils count was low at the time so I must have caught an infection and the antibiotics were to fight the infection and boost my neutrophils.

[Que-sera-sera in reply to SycamoreN]

So by "an infection" do you mean like an upper respiratory type of infection?

Pardon my "prying" I'm just kind of fascinated at how quick you were diagnosed with an infection and promptly given antibiotics. Here in the States or maybe it's just where I live and the type of insurance I have. My CLL person will not treat me for anything other than CLL. When I was in his office last, I've felt I had some kind of infection in my throat but yet I have to go back to my primary Doctor whom in turn might refer me to an ENT and meanwhile they literally go out of their way to NOT give you any antibiotics. I suppose had I been running a very high fever, might've been a different story.

So as of yet I still never rcvd antibiotics because even when I had some signs, the ENT said it could also be "viral".... In which case antibiotics will do no good. Do you see where I'm coming from??

Furthermore, my primary Doctor also says: if it's an infection we have to know which kind so that we give you " the right" antibiotics,,,so is quite frustrating...hence my amazement with your situation

[SycamoreN in reply to Que-sera-sera]

My temperature had been 39.4 for 2 days and I couldn't get it down with off-the -shelf medication so I called the NHS urgent care service for advice (I'm in the UK, by the way). It was the weekend and I couldn't contact my own GP. So it was the emergency service that sent an ambulance to take me to A&E because they were afraid of the risk of sepsis with the high temperature and a history of CLL. I didn't have an obvious infection, just the fever, shivering and a sore throat.

It's also the case in England that my haematology team only treats me for CLL and my GP for all other medical problems, but the two talk to each other. I'm sorry you've had problems getting treatment for your infection. I'm surprised though that your CLL team will not take your chest infection seriously, if you're immune compromised.

[Que-sera-sera in reply to SycamoreN]

Thank you very much for explaining and yes, I figured most likely you had a temperature and so they had to get right on it, versus me with my symptoms that were probably more "iffy" and didn't even have a temperature but still felt like heck.

The part about GP and CLL specialist communicating also happens here but rather than being a plus seems more of a minus because if I go to GP with symptoms, often the default is that it must be my CLL and or the imbruvica and asks if I have I checked with Specialist. You know what I mean? Is like neither wants to treat, so I guess we have to try to be more assertive and advocate for ourselves.

Take care and Thanks again.

[Jm954 Administrator]

Hi Sue,

I put on 10kg (about 22lb) in the first few months of Ibrutinib and despite my best efforts, it has proved almost impossible to lose again. Rapid weight gain is listed as a side effect but, like the arthralgia and systolic hypertension, doctors seem reluctant to attribute them to the Ibrutinib. Good luck.

[Que-sera-sera]

I know this wont be received well, but I would love to gain some weight!!

Allow me to explain: I'm 5'10 and all of my adult life have been right around 150 lbs. Well, just prior to starting my first treatment (ibrutinib) I was having digestive problems and everything I ate was causing me pain, and so my weight dropped from 150 to 135 !! I'm going on 4 mos now on ibrutinib and with difficulty, I'm barely managing to stay over 140. And i say with difficulty because I feel all my meals need to be high calorie or I immediately loose again and so I have to eat things I probably should not be eating just to try and keep my weight up, so this posting came as a surprise and hopefully if it will help with that, maybe I can recover the rest of my weight and maybe even gain additional.

Anyway I know it might be hard for some to relate, but plenty of people in general and cancer patients in particular struggle to keep weight up and so it can be just as difficult to gain.

Regards.

[IAMSUEBW in reply to Que-sera-sera]

I am sorry you are having such a rough time both before ibrutinib and during this treatment. I did not have digestive issues. My lymph nodes enlarged somewhat 3 years after chemo and my doctor suggested Imbruvica (ibrutinib ). I was skeptical at first but decided to try it. It has done wonders for my nodes thus far. My last ct scan showed marked regression of my nodes. My only side effects from the ibrutinib were red spots like a rash upon occasion, muscle spasms and weight gain. I will continue to see how this plays out. Best wishes with all of this for you.

[Que-sera-sera in reply to IAMSUEBW]

Thank you for your reply. So how long have you been on ibrutinib? And do you still or any chills or night sweats? Or feeling like you need to cleat your throat constantly? What about energy level?

The rash or red spots I do keep hearing about except mine are in a bad spot, (under my tongue!!) And really scared me to the point I even thought they could malignant, but Thank God I do see them kind of getting better on and off and I assume if malignant they would only get worse. Knock on wood!

[IAMSUEBW in reply to Que-sera-sera]

I have been on ibrutinib since May 1, 2016. I then had to stop it for 10 days while I had a dental procedure to fix a broken tooth (5 days before and 5 days after procedure). In July I got a sinus infection and was taken off drug again for 7days to take antibiotic but I continued with a bad cough for about 6 weeks. I took Delsym and Muscinex DM per my doctor. Since July 22 I have been on Imbruvica continuously.

My energy level is pretty good, but do stop for a few minutes between tasks. No chills and night sweats once or twice a month. Have noticed occasional times needing to clear throat which is not always easy. This is not a constant.

The red spots seem to come from nowhere. Sometimes I remember scratching an area on my leg, arm or foot after the red marks appear. They never hurt or itch and are not big patches. It usually takes a week or so to clear completely.

I continue to be cautious around sick people and wash my hands all the time. I definitely understand your concerns when something out of the ordinary occurs and you don't know if it's a side effect. Hope my experiences help.

Stay well.

[Que-sera-sera in reply to IAMSUEBW]

Yes..Thank you, that was definitely very helpful! I particularly find it interesting that they stoped your ibrutinib momentarily while on antibiotics. I am adding that to the list of questions I have for my Cll specialist.

But yes, it is hard to get used to our "new normal", especially when one has been so healthy in the past. I am not used to being sick, the most I would get was a cold, and even those would come n go in no time and here I am with one for almost a month!

Anyway, hopefully with a little more time, me and Ibrutinib can get into a " little groove" and keep it going for a good amount of time.

And same goes for all of us with this "thing".

Take care!

[scarletnoir]

Dear IAMSUEBW,

Sorry you have had to join the club.

I'm not here with advice, but with a request - do you think you could switch off the CAPS LOCK on your laptop (or whatever)? Online, using CAPS for everything is generally felt by readers to be equivalent to SHOUTING and comes across (quite unintentionally, I'm sure) as A TAD AGGRESSIVE.

I would appreciate your consideration in this matter - thanks.

[IAMSUEBW in reply to scarletnoir]

I have already been scolded about the caps which I was completely unaware of. Sorry as I do not intend to be "aggressive or shouting". Guess I don't know enough about internet and blogs. This will not happen again.

[scarletnoir in reply to IAMSUEBW]

Thanks! I guessed it was a lack of awareness, rather than anything else - it happens quite often when people first use forums. I'd also like to thank you for bringing the weight gain issue to my attention - not something I was aware of. I have not had Ibrutinib treatment, but it may be offered when I relapse - and I already carry a bit too much around the middle, so that might be a problem!

Best of luck with your treatment!

[IAMSUEBW in reply to scarletnoir]

Thanks for your kind words.