Idelalisib & 17p deletion: Is anybody else on... - CLL Support

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Idelalisib & 17p deletion

spud2212 profile image
13 Replies

Is anybody else on my "whacky" journey with this most difficult prognosis.. It'd be good to share experiences and thoughts... Positivity all the way!

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spud2212
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13 Replies
specsx4 profile image
specsx4

My husband is 17p and 11q deleted. Neck nodes enlarging recently. Still not commenced treatment.

in reply to specsx4

17p and 11q deleted. Those are tough odds. Best of luck on his journey.

spud2212 profile image
spud2212 in reply to specsx4

do you know what treatment is being lined up for him?

spud2212 profile image
spud2212 in reply to specsx4

Do you know what treatment your consultant has in line for him?

Hoffy profile image
Hoffy in reply to specsx4

I am 53 and have 17P Del and Trisomy 12. I have been on Watch and wait for almost a year but Lymp nodes are getting bigger. Taking high does of green tea supplments. There will be a Imbruvica + Venoclax Clinical trail starting in Late Dec that I might do. It will be at 20 cites. I will probably do this. It should be a great Combo Therapy!

PE1234 profile image
PE1234

Hi spud2212

Like you I am 17 p but am on Ibrutinib .

I have been on Ibrutinib since May of last year .

My consultant is happy with how things are going .I will see him again inOctober

How do you find Idelalisib ?

The Ibrutinib is working well for me .

Can't say I never get any side effects because that wouldn't be true .I seem to lose one side effect and then go on to another for a few days .

Some days though a feel really good and think that they must have been mistaken and I don't have Cll at all .

B😉😉😎

spud2212 profile image
spud2212 in reply to PE1234

Idelalisib is working well.. my blood counts are near normal with no side effects at all.. My consultant has raised the idea of a mini stem cell transplant which I'm considering now.

Fant1924 profile image
Fant1924

Have both 17p- and tp53 mutation. Ibrutinib since Oct 15 and continuing to see gradual improvement in WBC, Hg, and platelets. Hardly any side effects. From what I read Idelalisib is not quiet as gentle. Slow but steady wins the race.

--Dennis, Auburn, AL

spud2212 profile image
spud2212 in reply to Fant1924

Fortunately for myself I have no side effects apart from the odd small rash. Glad to hear all is working well for you too!

Nanno75 profile image
Nanno75

I am in my 3rd year since diagnosis and still watch and wait. My fish test indicated that i am 17p deleated.My bloods are taken

every 3 months and my wbc was 21 in the beginning and is now 31.my alc was 18 and is now 28.

I suffer from the usual fatigue and an occasional swollen node, but the nodes seem to subside quickly. I rarely get night sweats, but do get a drenching sweat in the day several times weekly. I think i am still at stage 0, bit may have moved to stage 1. No treatment thus far. I make it a point to get at least 8 hours of sleep at night and rest during the day .

From what i have learned on this site, i am happy to put off tx as long as possible. In my recent reading i have discovered that cll folks with our deletion are called 'high risk'. So far i have grown used to having CLL and only wish more folks had an understanding of this type of leukemia...keep on keeping on and best wishes Spud.

I live in the US, not far from Mayo and the U of Minnesota, and would gladly participate in a trial if I could meet the requirements. Nano

spud2212 profile image
spud2212 in reply to Nanno75

Have you not been directed to by your consultant to what medication would benefit you?

Nanno75 profile image
Nanno75

My hematologist/oncologist states that i will not require tx at all until i reach stage 4...Nancy

spud2212 profile image
spud2212 in reply to Nanno75

That sounds fantastic :-)

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