Hi! I’m 79, living in UK and 18 months into being diagnosed with Chronic lymphocytic leukaemia (CLL) and suspected Chronic myelomonocytic leukaemia (CMML), I have been still at early stage and not needing treatment. However, yesterday I received a copy of my consultant’s latest report with new blood results showing that I have 17p depletion and ATM loss. Didn’t really know what that meant but, based on a quick look on the internet, these results look very very depressing. It’s another month or so before I can talk to my consultant. Can anyone advise and cheer me up?! Many thanks in advance.
p17 deletion. Can anyone advise or cheer me up?! - CLL Support
p17 deletion. Can anyone advise or cheer me up?!
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Fogey
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Out of 421 people on CLL14 trial just one has del(17p) and delATM. They also have TP53del/mut, POT1 and are IgHVunmutated. Even if you match the IgHV status that isn't you and the published results don't reveal how they did but they were on V+O and not C-O.
24 of the 31 people with del(17p) also have TP53del/mut. 19 IgHVmut, 11 del(13q), 8 NOTCH1, 4 SF3B1 and there are 8 other markers with smaller numbers.
The lack of a string of other markers is good as you are not "complex karyotype", which is a really very broad brush.
You may be a unicorn with a set of markers all of your own and that makes prognosis from markers very difficult when they tar everyone with the same brush.
Wow! Many thanks, Skyshack. Your reply is at a level of medical detail and experience which makes it difficult for me to understand. I have read that 17p deletion leads to a median life expectancy of about 2 years from date of starting treatment. Is this still the case? Am I doomed?! What happens medically to folk with 17p who refuse treatment? What is the best treatment? What are the side effects? Are the best treatments infusions or tablets or a combination?What other questions should I ask my consultant?
Incidentally, I have no noticeable symptoms yet apart from fatigue.
Thanks for your answer anyway and apologies for not being up to speed on the marker terminologies! Best wishes.
As Neil says stop and look at the date on any report. If it's before 2017 discard it. Then check its for targeted therapies like Venetoclax or BTKi drugs.
I don't know so much, I've only "had" CLL since Nov 2022.
The first blood test I had said FLCr 0.09. So I went looking for free light chains. Found a 2014 report that said FLCr < 0.1 was a strong prognostic indicator, median 18 months. Then I found a NHS haematology site that said if FLCr < 0.01 it was to be referred urgently but anything else was "consider referral". I knew something had changed.
AussieNeilAdministrator
How old was the information you were reading from your internet searches? These markers were relevant when we were reliant on having the DNA undamaged, so that the CLL cells would self destruct after cell division during treatment with the older chemo protocols BR and FCR, etc. Targeted therapies trigger apoptosis by inhibition.
Neil
Thanks Neil and hi from Scotland! It was a 2019 article jitc.biomedcentral.com/arti...
Are you saying that targeted therapies have improved outcomes and, if so, any references?
Best wishes, Murdoch, the auld fogey
Your study was about the influence of rituximab in combination with fludarabine + cyclophosphamide and Bendamustine. No mention of the newer targeted BTKi (the brutinibs) or BCL-2 (venetoclax) therapies 
Keep reading posts on study reports of the newer treatments; records are being constantly broken.
Neil
For the UK NHS FC-R is rattling in the trash can of history. It only worked well for half of the people that were IgHV mutated and TP53 wildtype, which is about 30% of everyone with CLL. Overall just 15% responded very well with long remission. That "very well" was good enough for it to be talked about as a "cure" for those lucky few (not you with del(17p)).
Acalabrutinib and BTKi drug has a 76% PFS for del(17p)/TP53mut at 48 months. It maybe the only CLL drug you take but it's taken continuously.
nature.com/articles/s41375-...
Short duration therapies have shorter medians of drug free remission and have an intense 5 week ramp up of Venetoclax. Then a BTKi like Acalabrutinib can follow on but effectiveness as 2nd line is reduced. So you have to feel you will get lucky and bet that the two shorter durations will exceed the single long duration of continuous BTKi tablets.
Venetoclax + Obinutuzumab, 12 cycles, 48 weeks, 9 IVs, 7 years of data.
nature.com/articles/s41467-...
Venetoclax + Ibrutinib, 15 cycles, tablet only, only has 3 years of data. This report is utter garbage, see reply to Fogey's reply.
aacrjournals.org/clincancer...
It's been said before but it needs repeating, CLL is something you die with and not from.
That’s great up-to-date information for me, Skyshack. I really appreciate it. Much more promising than I thought. I live more than 3 hours travel from the relevant medical centre so I need a treatment which is as simple, independent and travel-free as possible.
The enrolled cohort for CAPTIVATE FD was 159. The report I linked to was for 195 [1] as they included 43 subjects that had been on CAPTIVATE MRD arm and having achieved uMRD were then given a placebo. They effectively had a fixed-duration treatment. This addition of non random, selected subjects, that achieved the desirable uMRD will have skewed the results, making them utter garbage. The additional subjects were split with a bias to IgHVmutuated and very disproportionately by del(17p)/TP53mut with just 2 in having del(17p)/TP53mut and the rest being without these markers.
These are the latest results for the actual FD cohort.
pharmacyclicsmedinfo.com/do...
[1] not a fat digit on keyboard transposition error!
My wife was diagnosed in 2015 with 17P, TP53 and complex karyotype. At the time she was told 2 year life expectancy. A year later Venetoclax, a new pill given at home was a big game changer. She went into clinical remission after about 11 months and than pill free for over 3 years. She is now taking calquence and her blood numbers are normal. Lots of other pill options out there as well. CLL is becoming something like diabetes. They can't cure it, but they can treat it until you probably die of something else.
That is brilliant info for me, Shepherd777. You’ve cheered me up no end. As I said above, I live 3 hours from the haematology hospital so a simple and effective solution is great news for me. Well done to you and your wife. Best wishes to both.
I was diagnosed at age 67 with 17p deletion and TP53 and given 1-2 years to live by an insensitive big city hematologist. That was in 2014. I did not need treatment for the next 6+ years. I’ve been on Acalabrutinib for the last 2.5 years, with my numbers near normal and according to my thoughtful and kind cll specialist, I could be on these meds for another decade or more.
So, take a deep breath and (as hard it is to do) try and relax
Oh many thanks, Vizilo. You and the other responders on this forum have today lifted me from a deep self-indulgent morass of ignorance, fear and depression to a high of hope and joie de vivre. I have taken that deep breath and am happily relaxed. Might even pour a dram of malt whisky soon and raise a glass to you!
This is a great forum and its excellent contributors lift flagging spirits no end! Well done for finding us - you're not alone. Enjoy that dram of malt whisky. 🙂Linda
I did! And another! Hic!
With no known consultant at this unusual moment of medical transition, no specialist nurse and a local GP who says that the genetic details of blood cancer are beyond him, I’ve had to rely on this forum for what seemed to me to be life or death information. And, as you say, it’s been brilliant. Best wishes, Linda.
Murdoch
Thanks. I hope your faith in the health service is justified.
If it looked like it was urgent, they would see you faster. In my case, I had had tooth infections over one summer, and my doc knew in October my WBC was around 10K. When he saw the 50K result at the end of December, I had a hematologist appointment within days. A neighbor of mine with CLL diagnosis was feeling off/had symptoms, got bloodwork and called back within hours, they told him to go to the emergency room. If you had anything that seems "bad" you aren't given an appointment weeks out to talk about results.
When I was diagnosed in 2011, I was told I had something like a 50% change of dying within 5 years if I didn't get a stem cell transplant, because the few treatments available then didn't work well on patients with del17p. I also had numerous mutations, to where I was considered "complex karyotype" and that also was "bad."
But new treatments arrived (I did not do the transplant) and I am still here 12 years later. I've had a number of treatments, and one really nice long almost 5 year remission. My variant is considered pretty aggressive, I had so many symptoms and my bloodwork changed so rapidly initially, they thought I had an acute leukemia.
Try to remember when you read about "what these mean" that it is historical data. Many of us are beating the odds/making new statistics.
I don’t have the same markers you have, but at the time of my diagnosis I was given a 50/50 chance of getting to 5 years of life expectancy by my internal medicine doctor. One I saw a top notch CLL specialist in my area, he was much more optimistic than that, after getting a flow cytometry a few months later he advised me to relax that I will probably wouldn’t need treatment for a while. At that time I was 52, I already made it to 71 without intervention. You do the math… In summary, CLL treatment came a long in the last 10-15 years and most of us will probably make to the “next” life form with CLL and not because of it… So relax, find a good CLL specialist and enjoy the rest of your life. 🙏
Thanks, Edalv. I’m going to talk to a top CLL consultant in a few weeks. I take great hope and cheerfulness into that consultation thanks to you and the others here. 24 hours ago I was really down. Now, buoyed by the facts and advice from this forum, I am relaxed and optimistic. Many thanks.
In layman’s terms, my new understanding is that 17p deletion indicates the most aggressive mutation of CLL but that, as of the last couple of years, new targeted treatments can deal well with this and life expectancy and quality are pretty good. Is this correct? As I said before, I’m still at early stage with no major symptoms. Should treatment be started soon or only when symptoms develop?
Hello Fogey
When and if your treatment starts, may depend on either your symptoms, but trends in your blood number typically tell us when to start treatment. I have very aggressive CLL and have had two treatments due to symptoms in one case and blood numbers in another. Blessings.
There are 2 major things in CLL that cause the various problems IMO.
The first is, while we say it's a "leukemia" because lymphocyte numbers increase, what's usually going on is that our lymphocytes are not dying like they are supposed to. So their numbers rise. This is where all the fuss around "deleted 17p" (and the TP53 part also, which you will read about) comes in, because that is the part of the DNA that codes for the proteins telling our lymphocytes to die off. Depending on "how much" of the 17p region is affected on both DNA strands, we tend to have more problems than people who don't have mutations or deletions in this region.
The second is, defective lymphocytes can infiltrate the bone marrow and affect other cells made there. As our bone marrow gets crowded with CLL cells, the ability to make platelets, neutrophils, red blood cells is affected. Or the CLL may start growing inside lymph nodes, which then may affect other things as they crowd nerves & major blood vessels. It's also possible for CLL lymphocytes to affect other organ systems, but this is less common. A few here have had GI or prostate other problems, got a CLL diagnosis, and treating the CLL solved the other issue, there were CLL cells in their GI lining or prostate, that cleared up symptoms with treatment as new regular tissue replaced the CLL cells.
So depending on how your particular CLL variant acts, you may or may not need treatment. If the CLL cells manage to die off somewhat, and don't infiltrate your marrow extensively to where other things are affected, you may be in the roughly 1/3 of people who don't need treatment. I'll mention with a 17p del this is less likely, people who have intact 17p tend to be the folk who never get treated. But it's not the death sentence it tended to be 20 years ago. We now have drugs that are effective, and research on our disease continues.
I'll mention the other problem you have, which may mean you will need treatment sooner rather than later, is the ATM problem. ATM repairs DNA, thus helping prevent cancers. So with you already showing potential CML you may already have a secondary cancer. You may not get the CML diagnosis, but have other DNA damage not getting repaired where the closest fit is CML. Anyway, the ATM issue means you do need to watch out for secondary cancers. Skin cancers are possible, as are others. Don't take months and months waiting to see if skin or other problems go away, start a journal soon and note any symptoms daily to see if any sort of pattern comes out. I take phone photos of various skin problems, to date them as well as see if they clear up or get larger/more numerous. Many people with CLL react more strongly to insect bites, or our skin tears/cut easier, or heals slower. They may start noticing more colds, or sinus problems, whatever.
Thanks, SofiaDeo. That’s a very clear description of the situation. It doesn’t fill me with happiness but forewarned and informed is probably better than blind ignorance. Thanks for taking the trouble to explain. In particular, I had no prior knowledge of the significance of ATM loss. It’s definitely something to keep a close eye on.
Thanks again. Be kind to yourself.
Another 17p deleted person here diagnosed at 47 and now 55. It took me about a month to accept my CLL diagnosis and I month later, I got the news about 17p by reading my paperwork (the hematologist missed it). I also have a host of other negative markers. I'm on my second clinical trial on the way to my third so kind of a worst case scenario, but no one would look at me and suspect I'm sick and I am planning on sticking around. There is at least 1 person I know of who is 18 years into a diagnosis with CLL with a 17p deletion on this forum. At this point, they have multiple treatment options for you that are no more complicated than popping some pills (for most) and there are more options in the pipeline. Long story short, you can do this.
Thanks to you and the others on this forum, I’m now all geared up to do this! Great to hear your story, thompsonellen2. And well done for taking part in these clinical trials. As we say in Scotland, “Lang may yer lum reek” (long may your chimney smoke).
Hello Fogey -
You will get excellent support and advice here. Please know that a CLL/SLL diagnosis - even with higher risk markers - is no longer a death sentence. And it has not been for almost a decade, with newer targeted therapies that work well for just about all of us. When we are diagnosed with cancer - we "just want it out" of us - so wrapping our arms around "Watch & Wait" seems absurd. With new and improved treatments rolling out regularly - the longer you don't need treatment - the better treatment options you may have. That said - when you do need treatment - the targeted therapies are usually well tolerated with minor inconveniences in side effects. We are all unique and that is not the story for everyone but for most of us. I had another life as a project manager, and I approached educating myself about this disease and my treatment options like a project. I front loaded my knowledge through reputable sources like CLLSociety.org and this HealthUnlocked site - long before I needed treatment. Understanding the terminology and options for "when the time came" to treat - helped keep my anxieties in check. All the best to you on your journey- we are here for you!
Hello. I have been in watch and wait since 2010. As long as you’re feeling okay and your Doctor is keeping in touch, you should be fine. Try not to worry about it, stay positive. My recent visit response from my Doctor is you may never need treatment. I try to stay healthy and take precautions. I should say I’m 79 as well. I look forward to staying healthy and go for my regular blood work, only see the specialist once a year. Worry and stree are two thinks that can a break down in your system. Smile !
Hi Mojave. You are absolutely right about the huge negative problem of mental stress. That’s why I have been trying to educate myself about these new findings about my condition and that’s why your story is so encouraging. And why your cheerful advice is so pertinent. I will try to smile all day and forever! Thanks, fellow old-timer, and all best wishes!
I hope you are still staying positive and that you are well. I think a positive attitude helps as well as eating well and getting on with your life. I always remind myself that I could get hit by a bus . Life is unpredictable, so laugh as much as you can and enjoy all the positives.
Thanks, Mojave. Yes, still staying positive and getting on with enjoying life. Today we did a 4-hour flight to a holiday island. Wore a mask but now in a lovely fun hotel and going to enjoy ourselves for two weeks of luxury. Getting close to starting treatment but still on w&w and no major symptoms.
Thanks for thinking of me. I’ll raise a glass to you tonight!
The CLL treatments have come along way - My husband learned he had CLL in March 2022 (he is muted TP53 and 17p depleted) - he was accepted in a Dana-Farber study for his particular CLL with treatments of A&O&V. I call these treatments his CLL Angel warriors! He finished obinutuzumab. After 11 months his blood is MRD negative -
Hi Fogey - I think I can give you words of encouragement. My husband is 80 years old, he has had CLL for over 13 years. During that time, he has had almost every problem known to CLL - in addition he has had Richters. Most recently Colon cancer followed by removal of sigmoid colon and now MDS. He has TP53, 17p, unmutated with many other genetic mutations. My husband is doing amazingly well - we are busy making plans to enjoy our lives and we are confident that we can make this happen. The main reason for all of this is a fantastic therapeutic team who stays on top of everything and is very responsive when called upon. He has participated in three trials and has had countless treatments. I truly believe that a continued positive attitude has helped immensely. I share all of this with you in the hope that you will see that there is life ahead. Don't stop planning - keep going and make your life the important thing. Wishing you years of happiness as you go forward.
Hi Fogey,Take a deep breath and relax. I'm acouple years older than you and am also 17p deleated. I was diagnosed about 7 years ago and started treatment about4 years ago. I have had 2 bone marrow biopsies...the first showed 94 %
Cll and the most recent was 0%.
I was on Obinituzimab infusions to begin, then have been on ibrutinib 420 mg for the past 3 years. I am happy to say that i have been in remission for the past 8 months and feel great.
Of course you will have your ups and downs. But remain positive and you will coast right through this. I hope this has been a bit of encouragement .best regards, Nancy
I was diagnosed 4/23 cll in W/W period. I have complex karotype which from literature states is short-lived. But this is misleading. New drugs are available all the time with improvements. By the time I need treatment I believe they will have something that may even cure people. 10-15 years is what I read. So I'm letting God worry and assist with a cure. Bless you.
Hi from NZ, Fogey
You've already had lots of reassuring replies - and we're all different - but I was diagnosed in 1997 with the 17p-TP53 label. (That's when the thought was that our life span was short- doomed !) I'm still here, having worked full time from time of diagnosis till 2010. I went onto the BTK inhibitor drug Ibrutinib in 2016 , not because I was very ill but some numbers were changing & the drug became available. I'm currently on a minimum dose of this oral drug.
Best wishes for a long long waiting and watching time 😊
Magic, morepork. Hi from Scotland to NZ! Why are you guys so good at rugby?! Anyway, your medical history is very encouraging for me and I am learning from you and from the others that treatments are becoming really life-changing/life-extending/life-enhancing. Thanks so much for sending your positive message and good wishes half-way around the world. Lang may yer lum reek!
LOL re the Rugby World Cup at the moment - there is a sacred hush around the country when each game is being played and a sense that the mighty AB's may not be quite so mighty. The myth/legend in my rural part of the country as to why rugby is so dominant is that all the training is done by running up and down hills with a sheep under each arm. 😊😊
Haha! I like it! Always a fan of the All Blacks. Rugby as it should be played. And played by folk that look like athletes not gorillas! Might be a bit below par recently but, like with blood cancer, we have to keep believing. Just be glad you didn’t get the bum deal with the group draw that we Scots did! 🙄🤣
Hello Fogey
I was diagnosed with CLL/SLL in March, 2013. I have 17p del, TP53, unmutated & I’m still here, in remission at present! I had a relatively short W&W (1 year) but have only had 2 treatment regimes: 1. Ibrutinib x 6 years (developed resistance) 2. Obinituzimab/Venclexta, 2 year fixed treatment September 2020-2022
Thankfully, the newer targeted therapies control the “bad marker” demons within us much better than their predecessors!
This is great to know, MSUdawgMom. Your history demonstrates how great the new treatments are and this fills me with optimism. Many thanks for taking the trouble to help me and may your bad marker demons remain banished forever. Bestest.
There are a number of high(er) risk factors and the doctor should help you undertand what that means for YOU. Everyone is different. This may help you however. qxmd.com/calculate/calculat...
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