CLL Support Association

WEIGHT GAIN?

HAVE BEEN DIAGNOSED WITH CLL IN 2012. HAD ROUND OF CHEMO FOR 6 MOS. AND THINGS STAYED GOOD FOR ABOUT 3 YEARS. THEN MY LYMPH NODES STARTED GETTING SLIGHTLY ENLARGED AGAIN. DOCTOR SUGGESTED TRYING "NEW" DRUG IMBRUVICA. COULDN'T AFFORD THIS, BUT THANK GOD FOR PAN SINCE BETWEEN THEM AND MY PART D INSURANCE, IT IS PAID FOR. ANYWAY I STARTED IMBRUVICA IN MAY, 2016 AND HAD LITTLE OF THE SIDE EFFECTS NORMAL TO MOST PEOPLE. HOWEVER, I DO HAVE TWO THAT DRIVE ME CRAZY - FIRST ARE THE MUSCLE SPASMS THAT SEEM TO BE INCREASING IN TIME (BY THE WAY I TAKE MAGNESIUM AND ALSO HAVE CYCLOBENZARINE FOR THE SPASMS) AND SECOND I HAVE GAINED WEIGHT. I CAN'T CONTRIBUTE IT TO TOO MUCH OF A CHANGE IN MY ROUTINE. SEEMS ALL I HAVE TO DO IS THINK OF FOOD AND THERE'S ANOTHER POUND. I HAVE GAINED 10 LBS. SINCE I STARTED THE IMBRUVICA. HAS ANYONE ELSE EXPERIENCED THIS SIDE EFFECT? WOULD LOVE TO HEAR FROM YOU.

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Although not taking this drug, I do believe weight gain is one of the side effects listed for this drug. Am sure it must be difficult to deal with. Wonder if you could have a discussion about this with a nutritionist that cares for cancer patients - they may be able to help with suggestions so that you are not feeling hungry all the time. Or if that is not financially possible, I find the Mayo Clinic free nutrition newsletter a good resource that you may wish to try.

I hope the drug is very effective for your treatment and that the side effects you are experiencing lesson over time.

Sandy Beaches

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Hi there I have been on Imbruvica/Ibrutinib for about two years.I have suffered badly with muscle spasms/pain throughout my body also chronic fatigue. I have never felt well since diagnosis in 2013 although some of my symptoms could be from something else like nerve damage/ fibrmyalgia I do not really know and neither do my doctors. But I have never had any problems with my eating or gaining weight all seems OK there. I eat what I want when I want, no diet or anything. Another serious symptoms is heart and chest palpitations these come and go but are quite scary when they are happening.

Hope this helps in some way and good luck

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John133

You need to bring up the heart issues to your doctor, Imbruvica (ibrutinib) is known to cause heart problems like A.fib and flutter.

Untreated it could lead to stroke...

~chris

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Hi There, My palpitations come and go but quite severe when I have them also they are combined with a heaviness in the chest.

I have had various tests for this like cardiograms, 24/7 day heart monitor and others along the way but the doctors say although there some abnormal rythems etc if I can tolerate them let it be as they don't want to go poking around unnecessarily inside me. Well I agree with that but never the less the palpitations etc do worry me as they slow me right down.

It frightens me about the possibility of a stroke.

John

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A stroke has always been a concern of mine too. I pray this resolves itself soon and your mind will be at ease.

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Yes, my oncologist warned me about weight gain. I've also gained about 10 pounds. I guess will be plump and alive...

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Plump and alive sounds great to me!!

Lol

Farrpottery

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Yes. And I eat like a bird. I feel I can literally look at food and gain weight.

I eat about 1000 calories a day and don't loose anything.

I never had that problem prior to ibrutinib

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Yes , I think it is a pound a day! Well - it seems like it.

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Yes I have gained fifteen lbs in the past year that I've been taking it. Going to make a serious effort to lose some of it as the joint pain is made worse carrying around the extra weight. I don't exercise much so I will start there.

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Nurses told my husband do NOT go on a diet during treatment. They've had patients hospitalized that lost 50 lbs in a week.

During treatments no dieting.

These same nurses stated that some of their patients discovered that when taking Claritin d, joint pain lessened Now hubby takes it daily with Ibrutinib . It has helped. He also quit using artificial sweeteners Aspartame. His deep leg pains have stopped so no more diet sodas here

Personally for me if I leave off all sugars, white bread, white potatoes and white rice...my joint pain decreases immensely.

These are just simple things we have learned since his 2013 diagnosis

Hope they help.

Farrpottery

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Thanks for the information. Doctor doesn't seem concerned about weight gain, but it is uncomfortable for me. Taking the ibrutinib seems to make me hungry more often and I can't seem to not eat something, usually something not real good for me. I will have to try sticking to water instead of diet soda.

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I too have gained weight. I am a 67 year old female and started Imbruvica in February 2015. Previously, I had 2 rounds of FCR, but had to stop because of infections that had me hospitalized for over 2 weeks each time.

My diet has not changed, except for the better. However I am now 60 pounds heavier than when I started. Everyone says how good I look, but my BMI indicates that I am OBESE!

I know that my joints wouldn't ache so much if I were back to a normal weight. I have been unable to exercise since September because of shortness of breath caused by 2 bouts of pneumonia and some other condition that we are still trying to figure out.

Excuse the long reply ---just wanted you to know that you are not alone. Don't give up, I haven't. I WILL get healthier, I know that.

😊

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I have gained over 30 lbs since starting treatment with acalabrutinib 5 mos ago. Good diet and activity level have not changed. First 10 lbs the team attributed to recovery from "waisting". But enough!!! Fatigue, bone and joint pain make it hard to exercise. I'm starting physical therapy to help build strength back. Also working with my endocrinologist to uncover possible thyroid/metabolism issues.

Still on the bright side, the drug is working!!!

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Is your basal body temp 78.6 instead of 98.6? That's indication of thyroid issues. I've had that problem for 49 years now.

Farrpottery

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I have no idea. How do you check basal body temp? My doctor did a thyroid test two months ago and my T4 was a little high, but my primary doc doesn't want to do anything at this point. He indicated it was not off enough.

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First thing in the morning take your temperature before eating or drinking.

Use that temp.

After my husband had his first 6 months of chemo for CLL in 2013, his temperature is always a degree lower than normal and he gained weight.

I knew about the temp being a red flag Your doc should check your thyroid again and if it stays elevated look into it. That could be your cause of weight gain.

I can only imagine that chemo could interfere with lots of body systems.

I hope your treatments are very successful.

Sincerely

Farrpottery

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Thanks for the info. I will continue to keep on the thyroid possible issue. I will do what you said about the temp and see how that goes. There are so many things that chemo can effect and you don't even realize it. I had chemo in 2012 for 6 mos. Have been on Imbruvica for 16 mos. My counts are normal but I suffer with 3 basic side effects - weight gain - serious muscle spasms/cramps at times and occasional brusing - not real bad thank God. The weight and spasms are my biggest complaints and I take magnesium and cyclobenzaprine for the cramps/spasms. I definitely want to continue with the Imbruvica since my lymph nodes are not swollen and my blood work is good with very few exceptions that are stable.

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So glad Ibrutinib is working for you in spite of side effects.

My husband has only been on it 4 weeks. We are excited his stomach went down, and his appetite returned. He thinks maybe his spleen is shrinking. We know that's good. Obviously that would free up more room for an empty stomach to be hungry.

God bless, keep us posted on your progress.

Oh and hair loss is a red flag for thyroid also.

Farrpottery

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You are just a wealth of information. Thank you. I never had much problem with my spleen since my first diagnosis 5 years ago. It was a little enlarged and after chemo it got back to normal. 16 months ago my lymph nodes in my neck in particular started a slight enlargement at which time my doctor recommended Imbruvica. I was hesitant at first for several reasons. I was the first patient my doctor was prescribing Imbrubiva for - the handouts explaining most things was a bit scary and I could definitely not afford the cost of this med. Fortunately I was accepted into Pan Foundation and got it for one year free to me. They picked up my copay. I could not get it again from Pan and my doctor's office helped me to get it once more until April of 2018. My hair is thinner on top for several reasons - like cancer 30 years ago with no hormone replacement all this time. Chemo in 2012 thinned it more. Not certain yet about the thyroid - but will check into this.

Thanks again for this info. Hope your husband starts feeling better. Guess we all have our trials to bear.

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My resting tends to hover around 96.8. Peaked at gaining 40 lbs. Am now taking thyroid hormone and easily have dropped 15 lbs. The cytomel is also helping my fatigue and depression. I'd say more than just coincidence.

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That's great to hear. Your doctor is on the ball. Fatigue and depression are common in low thyroid.

So glad to hear you are better.

Farrpottery

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Well, I had to fight for it. Too often docs treat the numbers, not the symptoms. It's important for each of us to know our own bodies, and persist when things just don't feel right.

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Glad to hear that your doctor put you on something for your thyroid and it is working. I will probably make an appointment with my primary and try to see if this is something that would help me as well. I don't really think he knows just what CLL and ibrutinib effect. I just know that I am uncomfortable with this weight and get tired in the afternoon. I just figured the depression was part of the weight gain I can't get rid of. Thanks for your input.

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Hello Sue B,

I've been in Ibrutinib for over a year. Like you, I had no side effects for a while. From time to time I get tendon & ligament pain and both are extremely tight most of the time. At about 8 months I started getting all over hives, only every now & then & easily taken care of with Benadryl. Anyone else have this happen?

AND I too have had a sudden 10 pound weight gain at about 11 months. It would be more weight except I have been seriously dieting. I am finding it extremely difficult to take off the weight plus I'm always so fatigued. Are you fatigued as well?

BUT my CLL has responded very well to the Ibrutinib.

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I HAVE NOT HAD HIVES, JUST RED BLOTCHES EVERY NOW AND THEN ON MY ARMS AND EVEN ON MY FACE ABOUT THE SIZE OF A NICKEL. THESE DO NOT ITCH OR ANYTHING - NO RAISED AREAS, JUST RED. I ALSO GET THE RED SPOTS HERE AND THERE LIKE I WAS TOLD (LOOKS LIKE A LITTLE RASH BUT IT'S NOT). YOU ARE SO RIGHT ABOUT THE EXTREMELY TIGHT FEELING. I DIDN'T KNOW HOW TO DESCRIBE HOW MY LEGS AND HANDS FEEL, BUT THAT'S IT - VERY TIGHT. WHEN I GET A CRAMP IN MY ANKLE, FOOT AREA, I HAVE TO STAND AND IT WILL FINALLY UNLOCK - WHICH IS JUST HOW IT FEELS. IT'S LIKE A RELEASE OF THE TENDON OR MUSCLE. FATIGUE IS JUST A LITTLE - FORTUNATELY. I AM A MORNING PERSON ANYWAY, SO DOING HOUSE WORK ETC. HAS TO BE DONE BEFORE NOON OR I AM NOT INTERESTED. I DO RELAX PUTTING MY FEET UP AND READING A BOOK. THANKS FOR YOUR RESPONSE.

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I get red dots and splotches. That started at about 4 months. They favor my nose and face. I wear makeup sometimes now.

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Are you on ibrutinib? I feel fortunate that my red spots/rash has never been large and not on my face unless I accidentally scratch myself. Makeup is wonderful, isn't it. My best to you.

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It's just wonderful that your CLL is responding to Ibrutinib 💚

Farrpottery

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Sorry to hear about the weight gain but appreciated your post. I've gained 30 lbs since starting Imbruvica in April 2016. As well, my routine didn't seem to change. My Dr tells me the meds won't cause weight gain but seems like a pretty big coincidence.

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I DON'T NEED THIS WEIGHT THING. IT HAS ALWAYS BEEN AN ISSUE AND WHEN I GET TO A GOOD PLACE, THIS HAS TO START PUTTING THE WEIGHT ON. SEEMS LIKE DOCTORS AND THE IMBRUVICA REPS AND PHARMACISTS ALL DON'T THINK THE MEDICATION CAUSES THE WEIGHT GAIN. SORRY, BUT I DO BELIEVE IT IS A DEFINITE SIDE EFFECT - WHATEVER IS CAUSING IT - IINCREASED APPETITE OR METABOLISM OR THE EFFECT ON THE BK PROTEIN. MED WORKS REALLY WELL THUS FAR AS MY LYMPH NODES HAVE DEFINITELY REDUCED IN SIZE.

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Well it was my oncologist who warned me it might happen!

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Thanks for sharing. Too many yes responses lead me to believe it's reasonable this is a side effect not listed in the information I have. My best to you. I have my every other month checkup with my doctor Thursday. Right now I have labs every month, and doctor visit every other month.

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I lost weight while on FCR-probably from vomiting. But the wright gain really came after treatment stopped. I was so hungry I would eat and be hungry not long after. Once the weight came have not taken it off. My PCP has checked my thyroid function twice but normal. I also am listed as high BMI. But after starting ibrutinib I noticed I lost a couple pounds and my analysis report says I`m under weight! what? I weigh 197 lbs and went down 194. I also was walking, exercising when on ibrutinib first time in between all the joint pain- and instead gained weight so I `ve given up I just live my life and if I feel good I don`t worry- lots of people bigger than me anyway- don't have rolls of fat most in legs- I`m 59. I don`t believe that doc either. When I take dose I find I`m hungry right after but I just eat something take edge off. Other times not hungry at all. If one is tired possibly red cell count has dropped- I`ve found that the case for me -I usually have plenty energy but during the time the WBC rises in beginning of treatment drives RBC down - feel some fatigue but as numbers normalize I feel more energy. I just rest more- works for me.

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Hi IAMSUEBW

In response to your posting I have convinced myself that my weight increase following going on Ibrutinib,now 2 years ago, was due to two factors only.

Firstly, before treatment, my spleen had enlarged so that the pressure on my tummy left me feeling full. I never really felt like eating much. I was also concerned about CLL progression. Over 2 years prior to Ibrutinib, at 5' 9" I went down from the 15 stone, that I had lazily built up to over 10 years of good living retired, down to 12 stone, - from obese to overweight! Secondly,since my spleen has returned to it's normal size from soon after taking Ibrutinib, and I am thrilled that Ibrutinib is working effectively, I returned to unhealthy eating habits and have been going back up in weight - from "good living" - and good drinking! I went back up to nearly 14 stone.

Since the New Year my wife and I have been trying hard getting to healthy eating and no alcohol, with increased walking and are now losing weight at about 2 pounds a week. The plan is for me to be down to 10 stone by the autumn. This will place me in the middle of the healthy BMI scale. It is surprisingly difficult for us two to change our habitual eating - and drinking habits and, no doubt, we shall have some eating relapses on the way.

Scientists have persuaded me that weight increase is normally down to more calories in than calories burnt off. My experience has convinced me that they are right. I believe that my life style has caused weight increase, maybe down to psychology, not the Ibrutinib.

It is not my intention writing this to be sanctimonious, only to include scientific ideas into the discussion.

Good luck as you go forward in your treatment.

David

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Thank you for this information. I believe part of what you said is correct. My walking habit has decreased and I need to attempt to do this again. Cold weather and muscle spasms have resulted in not going out to walk. Snowy conditions don't help either. I must try harder. I wish you well.

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Hi. I started Ibrutinib in March and would say I've gained about 7lbs since. I don't know if it's all down to the medication. I did try dieting a few months ago and lost about 5lbs. So it is possible for me to lose the weight, given the will power. I haven't been eating as healthily as I should, so know some of the blame is with me unfortunately. Good Luck!

C

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Yes - weight increase of about 15 pounds in the 30 months I have been on ibrutinib. (Reduced to 2 capsules - 280 mg for last 7 months) Some of it - I think - is due to the arthralgia restricting my previous aerobic schedule. It has lessened considerably w the lower dose - I have resumed aerobics - added to my walking and yoga schedule - but the weight gain is still occurring.

Thanks for the question.

D

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When you reduced the dosage to 2 pills, did anything change with your counts or how you are feeling? Did side effects change? I know you said the weight gain still continues. Also I have been taking my pills in the morning. I he thought about changing to before bed, but drinking all that water makes me wonder how often I would be visiting the bathroom during the night.

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Counts have held - all labs are normal. Adverse events reduced - arthralgia - bruising rash - much less - Systolic BP - still unpredictable. I'm sure the weight gain contributes to this.

I take the meds in the morning - personal preference.

Keep up w the reports as the data expands. Bottom line is your quality of life - if it is improved -as it is for me - I don't rock the boat. This forum with the astute administrators sifting through the information for us - is a treasure.

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To everyone listing side effects of Ibrutinib - here's a very helpful video blog posted Sept 14th by a patient on Facebook of: Patient Power - A Patient Community

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How do I see this video blog? I don't know much about Facebook. I am very interested in this information. Thank you.

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Hi NoMoreCLL, got your message but cannot locate the video blog you mentioned. Can you tell me how to find it. Guess I am not Facebook savvy either. Would really like to see what side effects others have experienced. Thanks.

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