CLL at 78 and on Imbruvica

[Kenbikelaw]

Ken, 78, diagnosed with CLL 2012. Watch and wait ‘til Aug, 2017, then Imbruvica. Exerciser and cautious eater. Minimal side effects. Fingers crossed.

Restricted to the community to protect identity

[Cllcanada Top Poster CURE Hero]

Welcome Ken to our CLL community from 🇨🇦

~chris

[Kenbikelaw in reply to Cllcanada]

Thanks. it is good to have a place to discuss CLL issues.

[Newdawn Administrator]

Welcome Ken.

As you’ve posted a personal photograph, I’ve taken the liberty of restricting your post to the community to protect your privacy.

Regards,

Newdawn

[Kenbikelaw in reply to Newdawn]

I change the image. Can you lift the community restriction?

[Newdawn Administrator in reply to Kenbikelaw]

There was absolutely no need to change your image Ken. When you post, just ensure you tick the box that asks whether ‘everyone’ or only ‘follwers of the community’ can view your post. By changing it to ‘only followers of this community’ the little padlock will then appear next to your post and prevent your posts (and the responses) possibly being accessed on the internet.

Finally, you can always edit your post retrospectively to change it from the default of 'Everyone' to 'Only followers in my community (Hidden post)'. Just select the 'v' to the bottom right under your post and then select 'Edit', make your changes and re-post.

Regards,

Newdawn

[Kenbikelaw in reply to Newdawn]

Got it. Thanks.

[CLLCalifornia-USA]

Welcome to the Ibrutinib/Ibruvica family. I’m 65 and have been on it for nearly a year. I am enjoying my life again and am very active. Best wishes, Sally

[Kenbikelaw in reply to CLLCalifornia-USA]

Sally, Thanks.

[ladyprescott in reply to CLLCalifornia-USA]

Hi Sally...I am almost ready to go on Ibrutinib and I have read several posts that were somewhat alarming to me as they said they were sick, tired, some had to go off of it. I'm trying to stay positive that I will be one that will be lucky and sail on through. Did you have any reactions in the beginning? Please let me know and thanks in advance. Carole

[CLLCalifornia-USA in reply to ladyprescott]

Hi Carole. I have been fortunate not to have had anything so far. My hair color has changed. It has gone from white ( bottle blonde) to salt and pepper in the back. Maybe a little more wavy also. Sounds crazy but that is the extent of anything that’s changed. Before ibrutinib I had huge nodes, swollen spleen, fatigue, etc. if you met me today, you wouldn’t know I have CLL/SLL. As of yet, I haven’t even had the sniffles in a year. PM if I can answer any questions. Good luck. Sally

[ladyprescott in reply to CLLCalifornia-USA]

Sally...I've forgotten how to PM. Guide me, if you will.

[AussieNeil Partner Administrator in reply to ladyprescott]

support.healthunlocked.com/...

[ladyprescott in reply to AussieNeil]

Thanks, Neil.

[ladyprescott in reply to ladyprescott]

Got it. Sent you a reply.

[hmo1]

Hi Ken, Are you only taking Imbruvica and nothing else. How do you take this drug?

Thank you

[Kenbikelaw in reply to hmo1]

Yes, only Imbruvica. I also continue to take an adult multi vitamin, condroitin/glucosamine and an occasional Vit. C. My dosage is 3 - 140mg capsules daily at night before bed with full glass of water.

[ladyprescott in reply to Kenbikelaw]

Thanks, Ken. I was wondering about dosage and how many per day. Carole

[Leukemia-me in reply to hmo1]

My doctor recommended that I take vitamin D3. He said cancer patients do better if they have enough and mine was low.

[Kmc383]

53, W&W til Aug 2017, ibrutinib and do 2 rounds Fludarabine, doing well. best of everything for you on your journey

[Kenbikelaw in reply to Kmc383]

Thanks.