Greetings of the season!

[Jcalichi]

Hello all — I wanted to share holiday wishes and a healthy new year with everyone on this group! Newly diagnosed in March, you’ve given me so much information and support.

I don’t post often— to be honest my response to Ibrutinib has been so rapid and deep that I feel a little guilty. Combined with an initial course our rituximab, my WBC was back to normal within 6 weeks and everything else stabilized within another month of so. My latest checkup in March revealed nearly perfect numbers across the board. I had very minor side effects (2 weeks of pretty bad joint pain) but aside from that and brittle nails (hardly a crisis!) the treatment has been nothing short of miraculous. I’ve been back to work since June and most days feel normal (and certainly 10x better than the several years I was undiagnosed and constantly worn down, before fainting at the doctor’s office led to the shocking diagnosis!)

I know that not everyone has such good luck; that toxicities and resistance can develop at any time; and that I still have to take extra care about infections. I’m cautious but refuse to spend more than three minutes a day worried... my specialist in SF (who is involved in multiple trials) told me that was two minutes too long, based on the tremendous pipeline of new treatments available and underway.

That’s a wonderful gift for all of us. Particularly for those diagnosed early on Watch and Wait, I hope you can take some relief from this note... new advances are coming month by month it seems, and certainly CLL is near the top of the list of cancers nearing a functional cure.

Our families and friends certainly bear a heavy burden along with us — I hope this season is one where even those of us struggling deeply have moments of peace and grace, and make happy memories that will light the darker days. I’ve said a special Christmas prayer for everyone in this community but whatever you celebrate we can all (well, Northern Hemisphere dwellers are least!) enjoy nights getting shorter and sunny days stretching longer. Likewise any given day may be tough but on the whole, things are looking up for us as a community.

Again thanks to everyone for the knowledge and support you share so generously — May it come back to you many times over! ❤️🙏🏻💪🏻

[PlanetaryKim]

Seasons Greeting to you too, Jcalichi!

[Ilovemydaisy12]

Jcalichi~ What a beautiful letter full of hope and encouragement. I am so happy for you that you are doing very well. My lymphocytes elevated in 2014. Was not diagnosed until 2017 with very good prognosis markers. On W & W.

I love this community group. I love how the administrators and other volunteers are so committed to us, and the community is so caring. Brian K. was on this site today referencing informative videos for us to know of. What a dedicated community.

God bless you all! MERRY Christmas and prayers for all of you that 2020 be a year of new breakthrough for all of us.

Ms. Daisy

[virdieblue]

Hi Jcalichi-

About 1/3 of Cll people react to Ibrutinib react the way you and I do. My bloods

were normal after a month of Ibrutinib. Yes very lucky to have minimal side effects.

In my memory there is something that says we have a specific mutation that makes us react that way.

I have been on Ibrutinib 3 + years so far - long may it last

Virginia

[Canuck901 in reply to virdieblue]

You have favourable markers for sure , glad to hear it’s working well , as it does work well for many people

[virdieblue in reply to Canuck901]

Actually - I think it's the opposite. Targeted therapies have turned everything upside down!

[Canuck901 in reply to virdieblue]

Del 17 or TP53 I think the combo seems to be the best for now

[Mystic75]

Thank you, Jcalichi, for your lovely post. I think you captured the heartfelt appreciation so many of us feel. Your post is also a tribute to the administrators and volunteers, who work so hard to make this forum as beneficial as it is, even as they deal with CLL themselves. We are very fortunate indeed!

Happy Holidays and Cheers!

D.