CLL

[tootsie2]

I am new here. Have had CLL for about 4 years. Just started Imbruvica 2 weeks ago with few side effects. The tiredness increased and I am to get my first blood infusion tomorrow. My WBC is 62.4 Lymph 94.9 RBC 2.16 Hemoglobin 7.1 PLT ct 118 I am 85 yrs. Anyone out here have any good things to say about Imbruvica for a person of this age?

[starsafta]

I started Imbruvica two years ago at age 77. External neck and armpit nodes went down pretty quickly. Internal larger nodes in my abdomen took two years to melt away, at which point I began to feel energetic and focused.

My lab numbers took about two months to settle in the normal range, though platelets remain hovering around 120. It takes awhile for new red blood cells to find room to grow. Once they do, RBC and hematocrit levels typically aim for normal range.

Most of my side effects have been manageable. A couple bites of kimchee make heartburn go away. Biotin is helping brittle nails.

Everyone is different, so my experience may not match yours or others. I just wanted you to know that progress is possible, even at our advanced age.

I wish you a good journey. May you progress well.

[Jm954 Administrator]

I would say that as the Ibrutinib works its magic your haemoglobin will rise and you will feel so much better and less fatigued.

It's very early days yet so hang on for better days to come!

Best wishes

[tootsie2 in reply to Jm954]

JM954, I do not know how to put a question on here. The first one went thru and that Is all. Can you tell this old lady how to navigate HealthUnlocked

[Jm954 Administrator in reply to tootsie2]

Hi tootsie2 , firstly - I hope you're starting to feel better on your Ibrutinib now.

Here are 2 posts from AussieNeil and PaulaS about how to post and get the best out of the forum. These two posts explain everything much better than I could. If you have any problems please come back to us.

best wishes, Jackie

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

[umpireman]

Tootsie: I am 84 years old and my blood counts are white bc 69.48, lymph 56.7, RBC 2.52, hgb 8.6, platelets 50. My counts were better when I was on Imbruvica. I had to go off due to heart issues. I had afib and cardiac arrhythmia prior to starting Imbruvica, but after 2 years, they worsened and my oncologist felt he had to take me off this drug. I also experienced some swelling in my arms, legs and feet. If you have had heart issues, be sure to point out to your oncologist about any irregular beats or flutter that you feel in the heart. I am now taking Venetoclax, so far so good. John

[17Pisme]

Ibrutinib was a 4 year miracle for me and I'm a 17P. Rashes, bumps and one Staph infection. I wish it still worked for me. I am now on Venetoclax.

[Canuck901 in reply to 17Pisme]

How has the venetclax worked out ?

[17Pisme in reply to Canuck901]

So far so good. The initial switch over was bumpy since the ramp up of Venetoclax didn't match the Ibrutinib that was still working in part, but that was only about a 6 week issue. Things seem to be going smoothly now with my energy up and blood markers all in the normal range.

[Canuck901 in reply to 17Pisme]

Great news , how old are you now may I ask ? Is this the preferred drug now for older patients vs chemo ?

[17Pisme in reply to Canuck901]

I am 67. I don't think it's a preferred anything other than for me it was a second line treatment due to Ibrutinib running out of gas. The major winner appears to be the I & V duet. This study is receiving major kudos so far.

[Canuck901 in reply to 17Pisme]

Yeah my father is on W&W he’s in his early 80s still doing well , his WBC is going up slowly. But still around 24,000. He has some fatigue , but still really good for his age. Exercise and diet seem to be helping him

[Canuck901 in reply to 17Pisme]

Thanks for sharing your experience

[17Pisme in reply to Canuck901]

Good for him! I'll bet his attitude is great too.

[brerrabbit]

HI tootsie2, My husband is considering starting on imbruvica (v. chemo). He has medicare and it will cost him $2900 once a year plus $609 a month in copays. Perhaps you have commercial insurance. But if you have medicare, did you find a cheaper way to fund it? thanks so much for any help. brer rabbit

[tryandtry]

Hi Tootsie

I'm a 15 year "veteran" of CLL (78 years old). I used Imbruvica for 15 months through late 2016-2017. It was GREAT against CLL (all #'s in right direction, lymph nodes disappeared, etc), BUT keep a close eye on the side-effects.

I eventually got Afib, which led to mitral valve problems, & valve repair. I now use Calquence, which seems to work fine, but is much slower and gentler (on standard side-effects like diarrhea, rash, & bleeding; but it has only ~ 3% Afib. versus 15+% for Imb.). I suspect that Calquence will be FDA-approved for CLL w/in a year, or so. You might want to look at it then. Meanwhile, try reducing the # of Imb. pills, if you do have diarrhea, etc, and get periodic EKG's to check for Afib.

Good luck,

Gary

[Canuck901 in reply to tryandtry]

Did you consider venetoclax?

[tryandtry in reply to Canuck901]

Hi Vanuck901

NO, we never really considered Ven... I had done so well (CLL-wise) on Imbruvica, that we quickly gravitated toward another BTK-inhibitor (Calquence). I also did not want to go through the "ramp-up" for Ven.. I had just come off quite enough hospitalization with my heart problems.

Gary

[Canuck901 in reply to tryandtry]

I see. How has the calquence worked out ? Just reading the side effects I guess they get stronger with age

[tryandtry]

tootsie2

As I stated in the report, Calquence has been great, so far (but, so was Imbruvica after only 6 months). VERY Good CLL-response (both blood #'s & side-effects).

I never really thought about side-effects being age-related. I'm 78 now, and definitely have a lot fewer side-effects with Calquence than I had with Imbruvica (at "only" 76 & 77).

Gary