Newly CLL diagnosed with 17p: I feel ok, stage... - CLL Support

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Newly CLL diagnosed with 17p

Mdudar profile image

I feel ok, stage zero, yet not sure they can treat this, this is by far the worst of them all. Anyone with 17p that can tell me something positive ?

27 Replies
AussieNeil profile image
AussieNeilAdministrator

We have quite a few members doing quite well on the newer, non-chemo treatments despite being 17p deleted, probably most famously Dr Brian Koffman, who is doing well on Ibrutinib: bkoffman.blogspot.com.au/20... The important news is that you are stage 0 and it could be quite a while until you need treatment, by which time there will be even better treatments available.

If we need treatment and only have access to chemo treatments, (and that's most of us outside of the USA), many of us get to 17p deletion status eventually. That's because chemo selects out the clones that don't respond to treatment - the 7p deletion cells lack the genes to trigger apoptosis - cell death, when the cell DNA is damaged by the chemo treatment. Non chemo treatments use other mechanisms to control CLL, which is why they are approved for 17p deletion patients or as second line treatments.

Neil

Mdudar profile image
Mdudar in reply to AussieNeil

Dr. Koffman is one great man, he is all over the place to empower us all. He lifted me up last night as well with his wisdom and knowledge on this matter. Like the rest of us, concerned yet I take what god gives me. Thank you

Hubby, age 70, still works full time at a very busy CPA firm and plays golf 2 times a week. Labs off since 12/1914 but not officially diagnosed until this year. 17p and that other bad mutation. Feeling optimistic about how this will turn out.

Spacee (Linda)

Not a patient, just a carer, but quite an adept researcher... : ) You'll find that many, if not most, of the combination treatments being evaluated in clinical trials right now are as effective for people with the 17p deletion as they are for those without.

cllady01 profile image
cllady01Volunteer in reply to BettinaB

Bettina, there is no such thing as "just" a carer. You who care and stand with are people who feel the stress, keep up the vigilant search for knowledge and aid in the process.

Thank you for being.

BettinaB profile image
BettinaB in reply to cllady01

That's really kind. Thank you.

Hi Mdudar,

I'm 17p on first treatment with Ibrutinib for one year and almost 3 months now, doing well with it, not really experiencing the negative side effects that others have reported. Some have been on Ibrutinib for 5-plus years and very much hoping it will be same case with me, cause I think it's a HUGE blessing to take my 3 little capsules and be able to go on with the rest of my day...like "nothing's going on".

So, in your case I'd say no worries, there's a lot being researched that will result in availability of even better treatments.

Best Regards.

Hi Mdudar, The only thing I would add to what you’ve already been told is to find a specialist in CLL. Don’t rely on an oncologist or hematologist - although many are fine, they just don’t see enough CLL patients to have much experience with it. Best of luck to you.

Mdudar profile image
Mdudar in reply to pkpayne

Thank you

Mdudar -

Feeling okay is a good sign and as others have said, treatments even for a 17p profile have come a long way in recent years.

A bit about my situation. When my FISH showed 17p with TP53 problems, I felt like I was in a sinking ship. But it isn't necessarily so. It is rare but not impossible that a few of us with 17p can go for years without treatment. I am entering my 12th year and my counts are barely out of range. I feel very fortunate and I'm grateful to pass on this positive note to you.

In addition, it is important to do something proactive while we watch and wait. That helps address the feeling of helplessness. Diet and exercise that are appropriate for us and a lifestyle that nurtures mental health are also positives we can focus on.

As someone here has said, this is a community where oars are handed out to those who want to row.

Marcyh

Mdudar profile image
Mdudar in reply to marcyh

Thank you for taking the time, god bless you in every way.

Farrpottery profile image
Farrpottery in reply to Mdudar

My husband is also p53 and 17 deleted. Here in the states, with our Oncologist/Hematologist CLL specialist ... he first had a 6 month round of chemos that kept him in pretty good health until Spring of 17, he then was put on fcr but couldn’t handle it. September of 2017 he began Ibrutinib.

It has been a miracle drug for him so far going on 15 months now.

Initially his prognosis was to live maybe 2 and 1/2 years. We feel very blessed every day and we’re going on 6 years now.

My husband’s older sister died in 2007 of ALL. (She had religious restrictions against some treatments that may have helped her. )

There is no expiration date on the bottom of your foot!!

There are so many new medications for your specific deletion that you could very well die of old age or a heart attack instead of Leukemia.

Wishing you many blessings with your medical team and treatments.

Blessings

Farrpottery

gp7591 profile image
gp7591 in reply to marcyh

Marcyh- God bless you! I'm so glad you are doing well. Have you had any treatments? I'm curious- since it sounded from your posting that you did not, but since you've gone 12 years- if you have not had any treatment (and you're 17p and TP-53) that is a great sign for all of us in the CLL boat. Please let me know=- with whatever you feelcomfortable sharing. Many thanks- and wishing you good health! -G

marcyh profile image
marcyh in reply to gp7591

Thank you, G. I do feel blessed...so not deserving...can hardly believe it myself. But I remember hearing from one of the experts on a teleconference that he had seen it happen and that it's less common with women. My own hemat, who says he has treated hundreds of CLL pts, tells me he has seen it as well. Maybe we just don't hear about these cases because they "don't make the news." Each time I hear speakers make blanket statements about 17p I feel like standing up and saying there are exceptions.

gp7591 profile image
gp7591 in reply to marcyh

Marcyh- Not sure- are you on treatment? Maybe I missed that...

marcyh profile image
marcyh in reply to gp7591

Oops, sorry. I haven't had any treatment. "Treatment naive" and happy to be!

gp7591 profile image
gp7591 in reply to marcyh

Marcyh- That is absolutely outstanding. I am so happy for you!! You are a beacon of light to many people who have CLL, especially those with the more problematical markers/deletions, as you have some of those same markers and are doing well after 12 years without ANY treatment. Amazing!! God bless you!! -G

I am 17P deleted, Unmutated on Imbruvica plus Venetoclax and doing well so far. 1 year WW , 1 year on combo now. CLL is out of my blood so far.

I have read the China Study book and watched the Documentary on Netflix " Forks over Knives" and others. As a result I am mostly Vegan with some fish to help the drugs even more.

I exercise regularly including jumping on a trampoline to keep everything moving through my nodes. I have read it is good for your nodes in general.

A lot of good things coming as well.

Be well,

Hoffy

gp7591 profile image
gp7591 in reply to Hoffy

Hoffy- God bless you, too! How long ago were you diagnosed? I have read that researchers are getting excellent results with the "combo" therapies, including Ibrutinib and Venetoclax. Are you in complete remission? MRD negative? If so, that is OUTSTANDING!! Please let me know. Wishing you good health and success in the years ahead. -G

Hoffy profile image
Hoffy in reply to gp7591

I was on WW for 1 years but my nodes got really big. The IB brought it down in 5 days. started V after 3 months. After 9 Months I am MRD Negative in the blood and CR on the MRI.

I get a BMB in March and if I am MRD negative in the bone Marrow I will stay on IB or a Plecebo of IB.

If not I will stay on IB or IB plus V.

I was 55% 17P deletec and 50 % Trisomy 12. I am unmuated as well.

There is a debate weather it is better to do a combo right away or better to use IB first then V. Time will tell but the hope on the combo is to get off everything for a while at least.

Get a good specialist and avoid FCR or BR since you are 17P Deleted.

The CLL Society web site is very helpful too,

Be well,

Hoffy

gp7591 profile image
gp7591 in reply to Hoffy

Hoffy- That is GREAT news!! I am not 17p or any of the other markers, but I am unmutated. I am so glad to hear that the "combo" therapy is working extremely well for you!! I am seeing Dr. Stephen Schuster at the Univ. of Pennsylvania- who trained the renowned Dr. Anthony Mato (now at Sloan Kettering in New York- you may have heard of him). I am very encouraged that you have some markers of concern, but are doing exceptionally well!! Let's definitely keep in touch. Wishing you good health and much success in the years ahead... -G

Hoffy profile image
Hoffy in reply to gp7591

Thanks, Penn is very good for CAR-T if ever needed as well!!

Hi there, Mdudar! Don't panic, and don't despair! I can confirm everything else said here about a diagnosis of CLL with the 17p deletion. Yes, it is surely a much trickier situation to treat. But we who have it are so lucky, in that just a few years ago we had fewer options, and more reason to be fearful. My story is that I was diagnosed with CLL, with 17p, back in June of 2013. I was "watch & wait" for almost 2 years. Then my lymph nodes suddenly became huge and painful. I began treatment with the miracle drug Imbruvica. Have been on that for about 2 years now, doing VERY well. My numbers are almost normal, and my huge lymph nodes disappeared in less than 10 days. I have had almost no side effects other than brittle nails. No, it's not a cure, but I'm looking forward to being stable for quite a while. If I need further treatment down the road, I'm confident there will be something new. Treatment options are changing all the time. My best advice: get a really good CLL SPECIALIST on your team, and keep the lines of communication open amongst everyone on your team. Be careful of infections, be smart, and live your life!

Mdudar profile image
Mdudar in reply to cook4650

So very helpful Thank you

gp7591 profile image
gp7591 in reply to cook4650

Cook4560- Great news! You are doing well on Ibrutinib. I recently started and all my nodes appear to be completely shrunk back to normal. Have you gotten any detailed comments from your CLL specialist about the outlook going forward? I know that the new "combo" therapies are proving extremely effective. Any thoughts? Wishing you the best! -G

cook4650 profile image
cook4650 in reply to gp7591

Hi gene7591:

I see my CLL specialist at the Wilmot Cancer Center in Rochester, NY. At the moment I see him once a year and in the meantime my local oncologist every 3 months or so for blood work. The two of them communicate regularly. No, I have not asked my CLL doc about "what might come next." He is an internationally renowned research specialist as well as clinical, and I am sure he will be there for me with whatever I may need next.

Thank you all this far. I ended up with 17p at 5 percent of the cells snd 13q at 8 percent. You are all super wonderful people, thank you all.

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