17p people out there?

[steve_canada]

Anybody diagnosed with 17p and taking IMBRUVICA?

[mrsjsmith]

Me Steve and been on it for two problem free years now.

Colette in London

[steve_canada in reply to mrsjsmith]

I’m happy to hear it’s working well for you have you had any side effects - I imagine you are on IB?

I’ve been on IB for 1 year and the only thing I get are leg cramps at night but besides that I feel great also

[mrsjsmith in reply to steve_canada]

Very minor. I am sure I had the cramp already, so it’s just rubbish splitting nails is the main one. I seem to have been lucky.

Colette

[steve_canada in reply to mrsjsmith]

Collette I went to Princess Margaret last week to talk to Dr Lipton about potential Stem Cell Transplant . He told me that the success rate is only 50/50.

I wasn’t rally happy about that but since I’m doing well on IB, I’m gonna hope I don’t ever have to do a SCT

[mrsjsmith in reply to steve_canada]

Let’s hope we never need that 🤞

[steve_canada in reply to mrsjsmith]

Amen. The field is rapidly advancing -

[Hidden]

i'm 17p and tp53. i have b-pll

[steve_canada in reply to Hidden]

Me as well - are you taking IB?

[Hidden in reply to steve_canada]

imbruvica and venclexta

[81ue in reply to steve_canada]

I was on imbruvica alone for 17 months. I had ulcers in stomach and esophagus that I wasn't aware of, caused by imbruvica. Then got uncontrolled fevers and was hospitalized for sepsis (my guess is the ulcers were point of entry for infection). Now I'm on venetoclax and rituximab.

[Canuck901 in reply to 81ue]

How is the Venetoclax and Rituximab treatment going ? This combo therapy is gaining a. Lot traction

[81ue in reply to Canuck901]

My treatment is going well for 11 months now. I'm below normal WBC and neutrophil levels are also below normal. But those levels are steady and somewhat close to the bottom normal number. Other blood numbers are in normal range. At the end of the year I'll go off of rituximab. The first rituximab treatment was with side effects of nausea, vomiting and a severe cold shivering, but the next treatments were okay

[Canuck901 in reply to 81ue]

Interesting, I gusss the first dose effects you the most. How often do you get the Rituximab infusion? How many do you have left ?

Glad to hear your treatment is going well , fabulous news

[81ue in reply to Canuck901]

Initially , if I remember right, I had 4 weekly infusions, then I went on once every other month infusions and the doctor said this year and I'm done, so that would be 5 more.

[Jooby59]

I am and I have been on Ibrutinib for 6 months. It’s dropped my WBC from 462k to 11.6k so it’s been fantastic. Few side effects; dreadful muscle pain which was short lived & has gone totally, cracked finger nails & cuts, my lovely curly had to be cut short as it went weird BUT none of it matters as the tablets are working! Good luck to you too. x

[steve_canada]

Wow that’s great you’ve responded well. Have you changed your diet/exercise since being diagnosed ? Taking any supplements?

[morepork]

Hi from New Zealand

I'm also TP53/17p-and on Ibrutinb about 3 years now - on a break for a while due to side effects ( including inflamed joints , mild diarrhoea and some mild A/Fib), but back on it and slowly reducing those lymphocytes.

Just joining the chorus in reply - although your post says 17 hours ago, I'm hoping, since we are ahead of you due to the International Dateline this may not be too far behind.

Kia ora

Stephanie

[Shepherd777]

My wife is 17P and TP53 mutated with complex karyotype. She was on Imbruvica for about 3 months and her walnut size lymph nodes on neck and shoulder blades disappeared in about 2 to three weeks. Treatments did crack/split her finger nails somewhat and gave her excruciating joint and muscle pain. After three months she became toxic to Imbruvia and was switched to Ventoclax...a gentler ride for sure for her. Lab numbers became normal after 4 weeks on Venetoclax and after 11 months we took a vacation from Venetoclax. 15 months later and her numbers are still good. That is a total of 24 good months of response.

[Hoffy]

I am 17P deleted , Unmutated and have done very well on the Captivate trial,

See my past posts.

For me the Imbruvica plus Venetoclax has been very good.

In general Combo's have been very effective with for people with CLL. V plus I, V plus O.

Be well,

thanks,

Mark

[Hoffy]

See my past posts as well,

Hoffy

[steve_canada in reply to Hoffy]

Hi Mike, I didn’t know these meds could be taken simultaneously . My oncologists plan was to transition to Venetoclax after Ibrutinib progressed.

Thanks I will discuss this trial with him

[Canuck901 in reply to Hoffy]

How many months have you been off all drugs now ? Amazing results

[Hoffy]

They can be taken in Combo on a clinical trial so far. Other combos like Venetoclax plus Obinutuzumab ( VO) has been approved,

See:

ascopost.com/News/60057

Combos seem to be good for CLL especially with Venetoclax in my opinion.

Be well,

Hoffy

[Canuck901]

Are you mutated or unmutated? 17p del has some uncertainty with it but the Oral therapies have helped a lot.

[steve_canada in reply to Canuck901]

I’m 17p tp53 mutated

[Canuck901 in reply to steve_canada]

Being mutated is apparently a good marker

[Hoffy]

I am unmuted.