Ibrutinib

[jaypax]

I have just taken delivery of my first month's pack of Ibrutinib and will have my first dose later. I have to say that when I read the words "Cytotoxic Drug" on the package, it brought me down to reality and although I thought I had prepared myself for the pending treatment, it has made me worry about the possible side effects.

But that is by the by, I have a question which I hope someone can answer. I note that I should not eat grapefruit or Seville oranges whilst taking Ibrutinib. Does that include marmalade made with Seville oranges???!!! I love my marmalade but it appears I will have to switch to another fruit. Am I right?

Best wishes to all. Jeff P

[june65]

Hi. Also on Ibrutinib. Yes it does include marmalade. I also read somewhere to avoid pomegranate.

June

[TimHB in reply to june65]

I've given up grapefruit and marmalade but I do drink pomegranite juice. Asked my docs and no one has prohibited it, although I haven't gotten a firm, definitive answer. Do you have any more info on that?

[jaypax in reply to june65]

Thank you June65. That answers my question. I will miss my orange marmalade!!!!!

Best wishes Jeff

[TimHB]

NO MARMALADE!! I'm on ibrutinib - 4 weeks now and no bad side effects other than easy bruising and bleeding. On the plus side my lymph node pain with accompanying headache and light-headedness is reduced and I feel better and more energetic than I've felt in years! Miss my daily grapefruit, but that's a small price to pay.

[cllady01 Former Volunteer in reply to TimHB]

Tim, I understand missing grapefruit, I was a daily eater until I discovered that my Synthroid dosage would not stay even, and it was the grapefruit causing the interference. That was around 2002--so I am weaned, but i loved it so much.

Like you say, life or death possibility makes us more compliable, wakes us up!

[jaypax in reply to TimHB]

Hi. Thanks for your feedback. It seems that reluctantly I will have to forego my daily dose of marmalade! Perhaps lemon will be a good substitute.

Best wishes. Jeff P

[mrsjsmith]

Lemon and ginger for me ! Sadly not in the same league as Seville.

Good luck

Colette

[jaypax in reply to mrsjsmith]

Hmmm! Interesting alternative. Like you, I will miss the Sevilles. Just about to have my first marmalade-free breakfast! Feeling sad!!!

Thanks for your message. Best wishes. Jeff P

[MsLockYourPosts Passed Volunteer]

People have written about making marmalade with limes also. Never was a marmelade fan, but not being able to eat grapefruit for years (different meds) while looking at my beautiful grapefruit tree was hard. In the last few months I was taken off of the last of the meds with no grapefruit labels,

Chris, aka @CLLCanada has posted very complete lists of things to avoid while on Ibrutinib on here.

[Redlion in reply to MsLockYourPosts]

Hi, a link to this would be useful as I'm due to start Ibrutinib next week. Thks.

[MsLockYourPosts Passed Volunteer in reply to Redlion]

Chris just posted about this again. It should show up in your latest posts. I wasn't coming across the post he put up about everything to avoid, but if the latest post doesn't answer your questions let me know.

[jaypax in reply to MsLockYourPosts]

Thanks for your message. I've checked Chris's post and found it very informative. I am now 7 days into IB meds and so far so good. I have replaced my daily dose of marmalade with lemon and lime (not quite the same). But my dear wife has made fresh strawberry jam which is a great alternative and I now have an excuse to scoff as much as I want!!! Best wishes to you. Jeff

[jaypax in reply to MsLockYourPosts]

Thanks. I'll check on Chris's post. Best wishes.

[zaax]

I'm three months in and I am surprised how ill I was. My energy level is now though the roof, I now go on long walks and I mean 10 miles + something haven't done for 10+ years. Which makes me wonder how long I had CLL before I was diagnosed.

[jaypax in reply to zaax]

Thanks for that encouragement. I try to keep active but have found the last few months my energy level has dropped. Looking forward to improvement like yours.

Best wishes. Jeff

[migirlusa]

Jeff - welcome to the club. I started Ibrutinib 6 days ago and I don’t mind saying I was really scared. I don’t know what they put in this stuff but I have more energy then I know what to do with. I know it could all change but I’m liking this. Yesterday I had petechiae on my legs, neck and face. Not a good look. I take my pill at 7:00 am. By 8:00 pm I’m feeling tired. I sleep through the night then I’m ready to go. I hope it all goes well with you.

Pam

[Redlion in reply to migirlusa]

Hi Pam, Good to hear things are going well for you, now that you are 11 days in is everything still on track? I am due to start IB next week and like you were am a little nervous at the prospect. Wishing you well for the rest of your treatment.

[migirlusa in reply to Redlion]

I feel like everyday is a new adventure. I got petechiae which is a first indicator of low hemoglobin and low platelets. I had to have a blood transfusion yesterday. It wasn’t bad just long and boring. Well I did feel a little weirded out by having someone else’s blood in my body.my friend and I laughed that maybe I’d wake up speaking another language. You have to find something to smile about. I guess just relax into it. Understand the symptoms and call the chemo nurse immediately if you have any concerns. I have had lots of energy, sleep well and I drink a gallon of water a day. After a couple of days your body adjusts so you’re not running to the bathroom all the time. Keep me posted on how your doing.

[Redlion in reply to migirlusa]

I like your humor. Hope I also can get some of my long lost energy back. I had several transfusions a few years back following my RTA so I know what you mean. Did you go into this with low hemoglobin and platlets or was this a consequence of the IB?, fortunately all my blood results are within range except of course the lymphocytes. I'll be starting my treatment as an inpatient due to concerns re tumor lysis and a resurgence of my osteomyalitis condition. To be honest my biggest concern is having to live in the bathroom - could be a little embarrassing in a ward situation!!! Hope all goes well with you.

[migirlusa in reply to Redlion]

I have not had any issues with the bathroom. Just sing as loud as you can while you’re in there. 😎

[jaypax]

Hi Pam. Thanks for your message. Wow! I hope IB does the same for me. CLL creeps up on you and eventually you realise your energy levels are low, which is what has happened to me. So, bring it on! Hopefully I'll feel the same as you. It's great to have such positive feedback.

Best wishes. Jeff