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CLL Support Association
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Doc said time to start Ibrutinib

On my way back from Mayo visit hemoglobin dropped to 10 and platelets dropped to 116. Doc said time to start, I'm sick of the fight! I've spent over $20,000 on natural docs and supplements and sick of all the diets they've put me on. Nothing has worked for me. I want a normal life again with some energy!!! Hope I'm making the right decision😪

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Good Luck to you! Ibrutinib has worked for many of us. My numbers were worse than yours, and ibrutinib turned them around pretty quickly. Hoping the same for you.

kim

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I would expect Ibrutinib to work for you, as it does for the vast majority of people. I’m sure you’ve made the right decision.

Good luck with it and don’t be put off by the side effects. Most diminish and reduce over time so hang in there and give it time to work it’s magic for you.

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One concern I have is does it cause weight gain, I've been slender all my life. Don't want to deal with gaining weight!

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I gained weight, very rapidly but I was overweight beforehand. If you’re slim hopefully this won’t happen to you.

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Hi Aremmick,

Ibrutinib is very unpredictable re side effects. I got a lot of nausea so I actually LOST weight. The nausea has mostly gone now, as have most of the other side effects I had in the early months.

What is more predictable about Ibrutinib, is that it WORKS VERY WELL to knock back CLL.

Wishing you all the best, as you start your treatment.

Paula

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I hope the Ibrutinib goes well for you. There has been much positive feedback about it. In a similar vein to what Jm954 said, if you get side effects many will dissipate over time. I think I was hit by three or four I was aware of but all but one were transitory (lasted a few days). I got a couple of brittle nails that I think were down to Ibrutinib - they lasted a few months, but easy to handle.

best to you, rob

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Ibrutinib has been working beautifully for me after 4 months. Yes, it has a host of side effects but they're relatively mild compared to the symptoms I was suffering with prior to treatment. I don't mind having to take a pill for the rest of my life because I was doing that anyway with blood pressure pills and lots of vitamins and supplements, etc. What worried me was the cost but my Blue Shield PPO did approve it, and then I got into a clinical trial where all costs are covered. You might want to ask your specialist about clinical trials as well.

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Interesting to read your disappointing results from your efforts to control your CLL via diet and supplements, particularly given I recently posted about the low likelihood of diet having much of an effect here: healthunlocked.com/cllsuppo...

As others have shared, you should soon be feeling much better on Ibrutinib.

Thank you for honestly sharing what didn't work for you, as we can all learn from that too. I've been collating a list of unproven treatments here: healthunlocked.com/cllsuppo... If you'd care to share your experiences of what didn't work, (perhaps in reply to my diet post), that will help others to make more informed decisions. We can understandably complain about the cost of effective drugs like Ibrutinib, but if we consider how much can be spent on ineffective treatments, then on the basis of results, Ibrutinib easily wins out.

Neil

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AussieNeil, just felt I had to try natural things before I started to take a drug for the rest of my life. Hope all goes well!

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That's quite understandable and you have plenty of company, which is why I'm sure others would be interested in your experiences.

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Diet helps avoid treatments and some individuals will never need treatment. Diet is part of the equation, exercise and avoiding stress , meditation also play into the equation. You have to be strong mentally and physically. Happy that you are getting treatment I hope all goes well with the ibrrnib

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Please try not to worry, the medical treatment you'll receive will be extremely effective I'm sure.

I've had CLL from 2007 and felt much like you but with such advances in treatment, doctors can work miracles.

Keep laughing and smiling my friend.

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Don't beat yourself up about the money you spent trying to do it differently. You were doing the best that you could for yourself and accepting that it didn't work and that you now need a different approach is also doing the best that you can. You'll get great support, hope and motivation from the people on this site who are further down the road than you or I and who have seen great results from medication. I wish you the very best.

Beattie

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Thanks for the encouragement, I did put up a fight!! Now I think I need the help of Ibrutinib. Thankful I don't need to do chemo!

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Aremick don't worry about any weight gain you may or may not get. I would much rather be plump and above ground than slim and below. I hope your experience with ibrutinib goes well, I have already been told that will be my treatment of choice when my time comes. I have been doing the diet watching and exercise thing to hopefully keep the progression slow but I am resigned to the fact that I finally have to take a pill for the rest of my life. My Dad died from the disease in the days before Ibrutinib when the Chemo had no effect on his progression. We are lucky enough to have choices today. Be well.

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Thanks, I wish u well also.

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Sorry to hear you spent all that $ on self treatment. Many CLL patients try this, always to no avail. Ibrutinib is a wonder drug and can turn blood counts around in a week! That said, it also depends on how your body reacts to the drug and if you have any other health issues. Sure works well for me and I sincerely hope it will for you.

By the way, be sure to talk to your medical people about getting support for the cost of the drug.

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Waiting for the pharmacist at Mayo to call, my Doc said they check all avenues and usually very little cost. I hope so! My health otherwise is good, non smoker, and slender. So hoping all is in my favor for good results! Thanks!

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I understand how you feel. I was so afraid to start Ibrutinib. We all react differently. I had a couple of minor blips but overall I’m so glad I finally started. My energy has returned. I’m feeling like my old self. Hang in there. We are all here for you.

Pam

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Thank u, I'm hoping this is the key to energy!!!

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Am curious. What were the primary supplements you were taking and how high was your blood counts? Am in a similar boat but not yet ready for chemo. Not sure if the costs of supplements I am taking are worth the expense. I spend about $6k per year on supplements. My blood counts are still rising but very slowly at the moment.

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My WBC is at 129. Doc concerned about hemoglobin and platelets. Took turmeric, ginger, all kinds of mushrooms, adrenal help, and many others. Also did Rife machine and tons of tinctures and no help. Many diets from mainly fruits and veggies to keto diet. Gave up sugar from day one of diagnosis. Decided will just eat s healthy diet and see what happens. I had such hope in healing naturally but after 2 1/2 years of resisting, I guess I'm ready🙃

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Thanks. I have been taking ~ 2.4 grams of Curcumin, ~ 4 grams of Green Tea extract per day and ~ 2.7 grams of Milk Thistle per day as my primary supplements. Have done a lot of research into supplements on PubMed.com but I am a realist and not expecting miracles. I use to watch what I would eat more closely but not so much anymore; am trying to enjoy life to the fullest. Though I limit my beer intake to about 1 bottle per day, and wine to 1 glass per day.

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Enjoying life especially if you feel well is more important than supplements. A normal well balanced diet and normal exercise. The most important thing is to forget cll as much as possible and avoid stress. Iv had cll for 17 years and had chemo over 7 yrs ago. It will need treatment when my hemoglobin drops again. I have terrible fatigue and hope Ibrutinib will help. Im nervous of treatment. Iv had the chance to go on holiday and see some of the places on my bucket list whilst I was well enough. I hope you are well and dont mind me saying that its best to spend your money on things that make you happy despite the obvious worry at the back of our minds. Anne

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I agree! I'm just hoping my insurance will pay. Will this year because deductible is met. Just don't about years to come. I tell myself take one day at a time, but it's hard when fatigued. Good luck to her too!!!

Thanks

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Don’t worry about the weight gain. I have been pleasingly plump all my life, but lost a lot of weight before treatment. With Ibrutinib and Venetoclax I have not gained any back. Everyone is different with side effects, including whether or not you lose or gain weight. Having been less than slender all my life, I can imagine what it would feel like to be slim and then worrying about gaining weight. I was very scared that I would gain the weight back when I started the Ibrutinib. After many years of dieting, losing weight and gaining it back, I have finally come to the conclusion that we are more than a number on the bathroom scale. Being healthy is much more important. If the Ibrutinib works, don’t sweat the few pounds it might give you!

BeckyL USA

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Good luck with Ibrutinib. I've been on it nearly 3 years. No weight gain to note and can lose weight when I want. I feel well and am enjoying life. Hope you get well soon

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Thanks for the encouragement! I want so much to be myself again!!

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Ibrutinid is working for me. Diagnosed June 2012; Chemo Jan 2013, looking for Chemo again in early 2014 - Saved!! . Ibrutinid FDA approved in March 2014 and have been on it ever since. I have to stop running into walls - kidding - as i bruise quite easily and other than that I am fine at 76 and busy as much as before 2012.

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Thank u, I love to here all those positive messages!!

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I’ve been taking Imbruvica since June ‘18. Not experiencing the scary side effects that are listed. Never did. In the beginning maybe some increased fatigue and muscle cramps but nothing scary. The fatigue has subsided, my wife thinks my energy has improved and so do I. My muscle cramps are history thanks to a spoonful of mustard I take every day. I could contribute the improvement to MM (medical marijuana) but I started taking the mustard before starting MM. Just know that whatever you MIGHT experience diminishes over time. Every single drug we take including OTC drugs have side effects. Most people don’t experience any of those side effects. And trust me..... I was just like you thinking my world was coming to an end because I needed to start treatment with imbruvica. Thank God for these new drugs. And I’m praying I’ll soon be responding to treatment. So far..... not.

And even so.... I remain encouraged and feeling pretty darn good! Good luck!

Joel.

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Thanks Joel, hope u see improvement soon. Guess it's still a waiting game. Good luck!

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Husband started taking Imbrutinib In April. He has not gained any weight. He is slender like you as well. As of now and of August, his bloodwork is tending normal including those pesky neutrophils that always have been low. Few minor side effects, but his energy has returned and he starting to feel normal. He tried supplements as well, during a very short wait and watch. He is 11 Q deleted, and it didn’t help at all.

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Thanks so much, looks like I'll be starting next week. I soooo need my energy back. Take care!!!

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Best of luck to you.....prayers for you and others starting this journey...

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