17p patients—what has your journey been like?

[anongirll1927]

Hi everyone! I posted on here over the summer. My dad was unexpectedly diagnosed from a routine blood test (like many on here) in July. Unfortunately, he has bad markers, including 17p. That said, he is practically asymptomatic at this point.

He has his second oncology appointment in just a few weeks. I have a gut feeling/am trying to prepare myself for a short watch and wait given his previous blood test and prognostic markers. I honestly would not be shocked if he is recommended for treatment in a couple weeks (though of course I hope the disease hasn’t progressed that much, I’m trying to be realistic). Regardless, even if it’s not after this appointment, I know that he will probably need treatments sooner rather than later, and although the doctor gave him incredibly good odds of responding well to treatment, it still makes me very anxious.

So, to my 17p-ers out there…how long was your W&W? What did starting treatment look likes for you? How did you decide which treatment path to follow? How has it been going and how long have you been on treatment?

[Wild-camper]

Hi

I was diagnosed with CLL in 2017 and recently learnt that it is del(17p) TP53 mutated variant.I am approaching treatment in the near future but had a very Blessed 84 months without treatment after first diagnosis

[BigfootT]

Do you know if your dad is unmutated or mutated IGHV?

Unmutated tends to be more aggressive, but the new drugs are improving outcomes in that group. Mutated tends to be longer time to first treatment and a more indolent form of the disease, though we're all pretty unique. The disease really is heterogeneous and markers help with general prognosis, but are not very predictive at an individual level.

Bigfoot

[anongirll1927 in reply to BigfootT]

I believe unmutated, unfortunately. I believe the only way it would have been “worse” is if he had more mutations. It was pretty devastating and unexpected, especially because his nurse practitioner thought it may be indolent given his asymptomatic presentation and mid-range WBC.

[Fogey]

I lasted for 2 years on w&w without major symptoms but with eventual rapidly rising lymphocyte levels and swelling lymphs. Throughout that time, my consultant sent me for scans, arranged protective vaccinations (RSV, pneumococcal etc), reviewed my many comorbidities, particularly cardiac, and encouraged me to read up on the treatment options. We discussed and decided on the treatment together - Acalabrutinib - because of its effectiveness with 17p deletion, slightly better cardiac profile, and because I live remotely from a treatment hospital, making travel down for infusions involved in, for example, alternative V&O options very difficult. Also, because of my age (80), taking tablets daily for life wasn’t a major issue. Since starting treatment 5 months ago, I have experienced very challenging side effects including painful edema, leading to difficulty walking, pulsatile tinnitus, extensive bruising, mouth ulcers and fatigue. My blood data, however, are responding well and these side effects are now subsiding. It’s clear that we all have different responses so don’t be alarmed by this account. But clearly side effects are often challenging, otherwise there would be no watch and wait and treatment would start at diagnosis. I personally am feeling that the worst is over and look forward to some years of happy normality.

Every good wish to your dad.

[Skyshark in reply to Fogey]

Hoping your side effects continue to reduce and you stay the course with a long time on Acala.

[Fogey in reply to Skyshark]

Thanks Skyshark. New blood results just received this minute are very encouraging. Best to you too.

[bassoonma]

I’m 14 years W&W with 17p. Some night sweats, otherwise fine.

[Skyshark]

bkoffman is now approaching 20 years with del(17p). He had gone though a large number of treatments including a failed AlloSCT before getting on the trial for Ibrutinib. That "game changing drug" saved his life. With del(17p) the path is rougher and there are more rocks. By taking part in trials people like Dr Koffman have smashed some of those rocks to bits and smoothed the path for those that follow.

[mja511]

Feb 2015 diagnosed with del(17p) TP53 unmutated. W/W was only 5 months. Had 4 of 6 series of FCR chemo. When told that wasn't working I was told that I had 2 or 3 years left. Imbruvica was a new drug and I started taking it in Dec 2015. It works for me - still on it. How has my life been? I still work full time, I've taken about 30 cruises since then. Been to Europe 3 times. Now have 3 grand kids, bought an rv and travel the country. Life has been good. I understand right now it sounds scary - but have faith.

[anongirll1927 in reply to mja511]

My dad’s journey sounds similar so far. They think his W&W will end at about the 7 month mark (we’re at about month 4 rn) due to very few B-symptoms but rapidly doubling WBC. So hopeful he also responds to treatment well❤️