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CLL Support Association
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My first appointment at MDAnderson and then the trip home.

Just returned from MDA and My Oh MY!!! what a wonderful place.  Although I found it quite sad to see soooooo many people with cancer, the staff there CAN NOT be beat!  We never ran into one rude person in the two days we were there.  And with all that traffic compared to Western Kansas, I have no idea how they stay so positive and upbeat.  I met with Dr. Keating and his PA Jackie and they found two enlarged lymph nodes under my arms and then I had fine needle aspirations.  He then decided to begin treatment with ibrutinib.  They did run a ton of blood test ect. and some of those test will not be back for two weeks.  We are taking our whole family on vacation for our 35th anniversay the last week of April so treatment will not start until May.  We drove straight home for 12 hours and now my husband and I have about a whole new page of questions we wish we would have thought to ask.  SIGH..........  

  I have been reading what I can find on ibrutinib and some of the side effects do worry me.  I know we all react in different ways but I was wondering how common certain side effects are.  They spoke of watching for Afib.  I have a strenuous workout schedule that I would miss terribly and my heart is often racing throughout my work outs. Will this be a detriment?  How many ppl experience bone and joint pain and weight gain? I am trying to have a positive outlook on what I can benefit from this drug because I know it can do great things. Just when I thought I could begin to breath a little easier, I was surprised to find he wanted to start treatment.  I do value all the knowledge and kindness of Dr. Keating and I feel very safe in his care. Just another bump in my road.  Any thoughts and advice would be GREATLY appreciated. 

Rookie

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I am also a patient (68-male) at MDA for SLL, the CLL twin, and I am under the care of Dr. Samaniego  in the Lymphoma clinic down the hall from Dr. Keating.  I got to meet Dr. Keating at the CLL/SLL Conference at MDA last October.  What a wonderful man along with the other doctors & scientists leading the way in the treatment & cure of our disease! 

Regarding the side effects, I do have some of them & they can be a bit frustrating at times ... muscle cramps, sore muscles & tendons, wavy/frizzy hair, splitting nails (I fix with super glue), pimples (welcome back adolescence) ... but thank goodness, no A-Fib.  I began treatment in 2014 & after the first meds failed, I was switched to ibrutinib & have been on it for 2 years.  Thank you Lord for the pioneers who developed this medicine & the patients who proved it in clinical trials.

I have gained some weight but before treatment began I lost about 36 lbs.  My appetite is about normal - not ravenous like I would be on prednisone.  I take my ibrutinib in the evening after supper because that works best for my schedule.

Here's a good link regarding top questions about ibrutinib answered by Dr. John Byrd ...

cllsociety.org/newsletter/q...

Wishing you the best ... Lynn

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Hi,

I have been taking Ibrutinib for 2 yrs when I started my Dr who I love told me NO side effects. I have kept that in the back of my mind all this time. My finger nails are the only side effect I seem to have.

Happy trails-Bonnie

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Bonnie ... the frizzy, wavy hair & nail problems didn't start until I'd been on ibrutinib for about 1-1/2 years.  They say that the side effects lessen with time.  Just hoping the effectiveness of the drug doesn't lessen, too. 

I keep my nails short & trim them as needed esp. whenever I feel a rough edge ... and "Happy Trails" to you, too, .... Lynn

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Bonnie!  That is wonderful to hear.  I will approach it with that in mind!

Thank you so much for responding. 

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Thank you Lynn for the reply.  The article is very informative.  I will bookmark it......just in case.  

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hey rookie,

Dr Keating is the best of the best , I go to his second in command. Jackie Broadway will go out of way for you,,, very compassionate..I see his second in command and he is as good in my mind. All there are wonderful...

Questions you should ask them via the provided mymdanderson portal is ..who do you contact when they are at conference or away on vacation? I ran into that problem once and was frustrated because I did not have the name of someone that had access to my records....do it now! I didn't and well I should have..

I too am on I brutinib and it has worked for me.

I  agree with lynn47 ."...

Split nails ,fatigue, cramps and muscle soreness are the side effects that I had , and I am not too sure that the cramps were not caused by the fact that I could not work out because of the fatigue...it took all my energy to get thru the day, I simply did not have the strength to work out....I had to make the decision between working out and completely exhausting myself or trying to lead a normal couch potato life until the situation resolved itself.if u get to that point u will make the right decision for your body.A problem that came with the fatigue or the fact that I was trying to stay in shape was that I developed Anemia that slowed me down considerably and even caused me to have a transfusion once.

All above turned out positive as after 2 years I am in remission ...good luck...Fish 61

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Fish 61, 

Thanks so much for this information. I have been diagnosed for 1 1/2yrs. And I was wondering if you had fatigue before you started taking ibrutinib? I have not experienced fatigue at all so far. And I feel so lucky for that.  My son owns a CrossFit gym and I have been working out there for 3 years, I lost 40 lbs there in my first year.  It is a very intense workout and I go 5 days a week and take rest days and occasionally a rest weeks, on advice from my son and the other coaches there.  I am really hoping I can keep that up thru this treatment.  And, of course, I want to keep my weight stable. Dr. Keating said that sometimes we are, over the years, experiencing fatigue but it is slow so can go unnoticed as being fatigued.  He also said that some of his patients after being on ibutinib for a short while experience a resurgence of energy that they thought they had lost????

I thank you for your input.  This site is amazing in that it is so valuable to chat with someone who has been down the road we are approaching. I know our doctors are brilliant but few of them have actually "walked a mile in our shoes."

thanks again fish61 

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Come this June I will have been on ibrutinib for 5 years, also at Anderson.  I was fairly healthy when I began and my side effects have been few, the commonly observed initial diarrhea being the only really noteworthy one.  Initially it occured about once every second day and over 4~6 months diminished to once or twice a month.  Over the counter immodium will halt it if you take it at the very first symptom.  By trial and error I also found that taking a couple of Tums antacid tablets a half hour or so after taking the pills seemed to reduce the frequency.

Other than that my only changes have been that my normally straight hair got a little curly and my fingernails a little brittle.  Nail hardner works some but superglue works better, but they look a little ugly when they finally crumble!  I do have aches and pains but at 72 it's hard to blame those of the drug.  Most pre-existed anyway.

Best of luck.  Btw, it you didn't try it this trip I highly recommend staying at the Rotary House, that hotel attached to the MDA main building by a skybridge across Holcombe Blvd.

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@ lab Rat,

We did not stay at the Rotary House but we did consider it.  Maybe next time.  I thought maybe it was reserved for the sicker patients???  Do you know when and if diarrhea strikes can we take Metamucil for it? I know it would have to be hours after taking the dose of ibrutinib so it doesn't take away the effects of that.  I am 58 but I do have aches and pains beforehand so I am taking note of them so as not to blame the medication. Thank you so much for answering!  Every bit of knowledge helps. 

Thanks, Rookie

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The Rotary House is available to all MDA patients regardless of condition for the use of only patients and their families. The hotel is actaully owned by the Univ. of Texas, of which MDA is a part, and was built with donated funds.  Marriott operates it under condtract.  .  They will ask for your Medical Record Number when you reserve and a updated copy of your appointment schedule will be given to you when you check in.

Btw, if the Rotary House is full they can refer you to the nearby Marriott who will give you a medical discount if you ask and tell them you are a patine at MDA and the Rotary house refered you.

I don't know anything about possibly using metamucil.  I was given a list of Do's & Don'ts when I started treatment but that is now 6 year old information.  There should be a newer issue available for you.

One thing to remember about ibrutinib is that it is both aborbed by the body quickly (Tmax = 1~2 hours to max concentration in the bloodstream) and also expelled quickly; the serium half life is 4~6 hours.  Don't stagger out taking the pills, you want as high a concentration as you can get for that short period of time every day in which the drug is active.  Here is more info (you have to scroll down a screen to get to the data):

rxlist.com/imbruvica-drug/c...

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So much information!!!!!  I love this forum.  I feel like a student again. Not a bad thing.......always did love school.  Lab_Rat do you take yours in the morning or evening?  The gal from Biologics said that if I take it at bedtime and have nausea I might sleep through it rather than try to carry on during the day???  I don't know. I won't start until mid early May so still have time to learn.  Thanks again for commenting.

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I've tried both mornings and evenings and currently do evenings simply because it suits my night owl nature better; I'm seldom asleep before midnight.

I've never had nausea, just diarrhea.

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PS - I'm probably one of the few people left being "double dosed."  I take the 6-pill/840 mg/day dosage as follow up to that original trial I was in.  Sort of a "canary in a coal mine" function.  If some long term nasty shows up it will probably hit me first.

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The NIH list of drugs is superior to rxList, which is poorly organized and mixes data from MCL, CLL and WM

Even here keep on the CLL data path, not off on some tangent.

It is important to note the drug interactions, since from my experience, doctors, don't seem to know much..

dailymed.nlm.nih.gov/dailym...

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Thank you much. I will take your advice.  It is so easy to get off the subject you are really wanting to research.  Man! I can waste a bunch of time surfing this site alone!  

Thanks for answering!

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We've never stayed at the Rotary House because we have stayed with relatives who live in the area.  I have an old friend from South Texas who comes periodically to MDA, and they always stay at the Rotary House.  They like the convenience & comfort of being very close.  They said the cost is about $125 plus taxes which takes it up to about $150 per night.  A little pricey for me if I'm staying more than a night or two ... not too pricey for my wife though - - she doesn't think too much of some of the "antique" hotels I've found over the years.  A friend from Abilene went through the American Cancer Society to find much cheaper lodging.  Area hotels often have a free shuttle to & from the Medical Center.

Call the American Cancer Society at least a week before your next visit to see if they can help you with lower lodging rates ... cancer.org/treatment/suppor...

Lynn

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One more side effect that no one else seems to have .... peripheral neuropathy ... tingling in my feet & hands ... oh well, the price to pay for a drug that works.

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Oh gosh that doesn't sound like any fun!  I hope that side effect skips me. We will do just about anything if we have the hope of a drug working!!  Take Care @LynnB1947

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