Good afternoon. I have now had CLL for one month and had a question for more knowledgable individuals. In this forum and my in-person CLL group, I keep hearing people say that people will die with CLL instead of from it. I have seen the chart that shows that death rates for people with CLL are similar to general population. These numbers make sense to me for people who are 70 or older at diagnosis. Wait and watch for 5 years and then do one or two treatments. Your disease is managed for 10-15 years. These numbers don’t make sense for people like me who are in their early 50s. Based on my Trisomy 12 unmutated, I will probably need treatment in 3 years. And then I will have V + 0 which will treat me for 3-4 years. And then a BTK inhibitor for 5 years. By my early 60s, I will have used the two best treatments. Living with CLL will only be a possibility if there is another major drug breakthrough. Am I correct in my assumption that the current survival tables don’t include the thousands of younger, healthy CLL patients who will face dying from CLL in the next ten years when the current treatments stop working?
Survival Rates: Good afternoon. I have now had... - CLL Support
Survival Rates
CLL researchers do recognise and are working on the issue of what the next treatment should be after resistance to BTKi and BCl-2 targeted therapies occurs. BTK drugs either bond covalently or non-covalently and when resistance develops in one type, generally the other type will work. There are also quite a few new BCL-2 therapies in clinical trials and it looks like at least one of these will work after resistance develops to venetoclax. There are many other clinical trials underway to fill this unmet need, including CAR-T and CAR-NK therapy.
healthunlocked.com/cllsuppo...
11q del, 17p del/TP53 mutated are tougher draws than Trisomy 12 unmutated.
A good example of the treatment revolution that has occurred in the last 10 years has been documented by DebinOz healthunlocked.com/user/deb... who was diagnosed with aggressive CLL at the age of 38. abtandme.com/
Keep in mind that one significant advantage of being diagnosed when young, is that you have a much better chance of a cure via a stem cell transplant. That procedure gets riskier with age and its use has correspondingly reduced as the newer therapies prove to be lower risk while providing longer remissions than older therapies. What's most important in cases such as yours, is seeing a CLL specialist. That's simply because they have the requisite knowledge to evaluate your prognostic markers and recommend whether to go for a stem cell transplant, or take the path of repeating and switching therapies for the rest of your life or until a cure eventuates.
Neil
Thanks Neil. I have two good CLL specialists. God I hope I don’t need a stem cell transplant. I saw a good friend of mine go through that for ALL. Very tough journey.
would you mind sharing via dm who your cll specialist is? I have kaiser (Oakland) and they don’t seem to have a specialist per se just an oncologist. I feel like I’m being “ignored “. He basically told me to “not worry about it “
I’ve had more education on this platform than anything from my medical team
Hello Eastbaydad. I remember going through the same analysis when I was diagnosed 7 yrs ago. I figured I had 7 to 10 years to live maybe. What I found out for me is that there are so many dozens and dozens of variables involved in trying to figure out me life expectancy, it was a waste of my time.
I am not sure I agree with your math that all you will get out of V and O and a btk drug is 10 years or so. Some remissions for unmutated cll with. V + O therapy may turn out to be very durable. And it’s possible some who do relapse can jump right back on V +O before going to a btk drug.
Add to that, I think the chances that in 10 yrs we do not have several new and better drugs to take are about nil based upon all the trials currently going on and based upon how much progress has been made in the last ten years.
Aside from the considerable improvement we should see with Car T and NK therapies, we already have several non covalent btk drugs showing promise.
I have been way down the how long am I going to live with Cll rabbit hole, and again, for me, it was a useless, if not harmful exercise.
I am not so naive as to think that my cll has not in some form or fashion “statistically” shortened my life expectancy somewhat. But I don’t know that. I also think that people on here are more likely than others to be on the good side of survival curves because people on forums like this tend to be more proactive than others and more resourceful than those who dont get educated and lead healthier lifestyles.
Good luck. I think your chances of living a long time with cll are excellent, not even factoring in the inevitable new discoveries in treating cll that will be made.
Neil and Jeff, your responses made me feel better after reading this post. I’ve been doing better mentally but the little 👿 still hovers over my shoulder. It’s so hard to live with this or any other life threatening disease.
EastBayDad -
You seem to be doing your homework well.
I was 55 when first diagnosed with CLL in 2011, Trisomy 12. IGHV testing was new, and I finally got it in 2013, and it showed mutated. My ALC was much lower than yours, even then. I stayed watch and wait till 2022. A repeat IGHV found I was unmutated, which they explained as either the first test being wrong, or that I had 2 different clones - a rarity. I think my low numbers over the years favor the latter theory. Try not to obsess over ALC. It's not usually what signals treatment.
I like trials. I like human data points. I'm an amateur science nerd. So, I started treatment on a fixed duration trial of Pirtobrutinib, Obinutuzumab, and Venetoclax in 2023, and just finished last week, complete remission. I expect I will again be U-MRD6 (<1 CLL cell in 1 million WBCs) on ClonoSEQ when the test comes back in a few days. I'm hoping to get several years or more remission. Since it was fixed duration, I can still do any or all of the drugs again, since resistance usually takes a couple of years or more of treatment to develop. The combo also helps fight resistance, because whatever resistant clone has a good chance of getting killed by one of the other drugs.
I would not look at averages for planning and decision making. It's like driving while looking in the rear view mirror. The road may curve pleasantly, or otherwise. I think you're being prudent, but I think you need to add in the research factor, and give it significant weight. Use historic average stats as a baseline, maybe, that set a worst case.
As the others noted, there's quite a few variables that determine your path. There are more drugs now, and more to come. Many people on BTKi's have yet to reach relapse or intolerance, so the stats get better every year. It's 10 years in this year's reports, but some will go 11 years. It's not a cliff. Some will die of old age. Some will forge on.
=seymour=
isn’t the average person on a btk 5 years before relapse? 10 + years is awesome.
Sushi -
You're right. It's been 10 years since Ibrutinib was FDA approved, and maybe 12 since early trials.
I think the average depends on markers, and soon, on which BTKi. Some quit due to side effects, some die of things like COVID or comorbidities.
=seymour=
Sorry Seymour, I knew about the 10 years plus of people on ibrutinib, somehow I was thinking specifically acalabrutinib.
Acalabrutinib was only FDA approved for CLL in 2019. So there's just not much more than 5 years of data possible.
Fewer people discontinue it due to adverse effects. So it will probably have a longer average as time goes on. Zanubrutinib as well.
=seymour=
Thanks for clarifying Seymour.
my brain is fried lol
My wife was diagnoses in 2015 with the dreaded 17p and TP53 and told statistically she had 2 years to live. Later we found out some stay in watch and wait for 17 or even 20 years with 17p and Tp53. There are so many variables.
However my wife was only in watch and worry for a year and began Imbruvica to slow things down. It knocked her swollen lymph nodes out of sight and else where in her body in two weeks. She could not handle the toxic side effects so a month or two later with the recent approval of Venetoclax she started on it. Statistically Venetoclax was working on 17p and Tp53, but for how long would the effects last.
Venetoclax put my wife into remission in 4 weeks and after about a year she went off to see what might happen. She remained on nothing for the next 3 years and 7 months. However, for about 16 percent it did not help the 17p group much at all. Every body is different,
Presently my wife had a choice of going back on Venetoclax or try Calquence. She chose Calquence for its gentler side effects. After a year and a half with blood work normal she has taken another break or vacation from treatment for the last 5 months and is doing well. Yes we have been worrying on and off for 9 years and now we just find ourselves more relaxed knowing we have at least three maybe four good choices before us when the numbers get nasty.
Hi EastBayDad,
I was diagnosed in late 2011 when I was 56, and thought at the time that I'd not live past 70, if that. At the time treatments were much more limited, so the first oncologist started me on Bendamustine + one round of Rituxan. Next in line was the newly approved "gold star" as the former oncologist put it, Imbruvica, and most recently Venetoclax. When I think how much the past 10 years has advanced with treatments, I believe that the next 10 years will be that much more advanced. It's scary to hear that we have CLL, but you are fortunate in that whatever you end up starting with for a treatment will give you quality of life. Now in my 13th year, after this remission, I believe my next treatment will be V+O. I know you will have many more years ahead of you, and they will be quality years.
Schubert
Thanks for the advice and encouragement. So glad I found you guys. My oncologist (lovely guy) answers all of my questions the same way. “You don’t have 53. That is most important thing.” Glad you can offer me more nuanced answers.
I was 52 at diagnosis in 2011. I'm looking at treatment #6 or 7. The targeted agents were brand new, and I did 2 clinical trials for drugs not currently commercially available (I believe one is still on clinical trials).
There is some growing thought that time limited treatments may simply be repeated if one enjoys a remission longer than several years. So it's not necessarily that "one will run out of options if diagnosed younger." If V&O treatment is fairly uneventful, and you get 3-4 years or more, you probably can just repeat it, you know.
The reason our standard chemotherapeutic or early MAB treatments from 10 years ago aren't being recommended for a repeat, is they are more bone marrow damaging, they aren't targeted. Docs do not want to repeat a highly immune suppressing treatment unless they must. So up until recently, it *was* possible to run out of options, but the targeted treatments have changed everything. You can't read the older data and try to extrapolate, these newer agents are changing the way CLL is done.
So even if newer drugs weren't approved, we can probably repeat a successful treatment if remission lasts long enough. There is at least one study attempting to determine how deep one must be in remission, how much treatment, to get a remission that would warrant simply repeating that treatment some years later.
If you can be in a study without severely impacting your life, please consider one of this type if you need treatment. They use already proven agents, just, trying to determine if one combo is better than another, or if they are actually similar in terms of how long people stay in remission. Right now it's a guesstimate.
And other drugs with newer mechanisms are being looked at, in addition to newer better versions of what we currently have. You actually got a diagnosis at a pretty OK time in CLL history, you have a lot more options right now than I did 13 years ago. Who knows what will be available, IF you end up needing treatment. Remember, CLL is not "uncontrolled growth" like other cancers, it's more "impaired death". You have the diagnosis so you are immune impaired, but only time will tell if your particular variant dies off faster than it grows. This is why aboout 1/3 of us never need treatment; the CLL dies off, and the new CLL cells are not growing so fast that they affect other things & something must be done.
Thank you for your very helpful response. My trisomy 12 CLL lymphocyte numbers shot up from 4 to 74 in 18 months. My oncologist thinks I could be on treatment later this year or in 5 years. Luckily, my doctor is at UCSF. Good chance I will be in a trial there. Feeling great and knowing there is a cancer exploding in your body is a very tough feeling to get used to. Right?
I know, and I have both a TP53 mutation plus a 17p deletion, plus others. I was told back then those markers were resistant to currently available treatments, and without a stem cell transplant I would likely die. I think I was told 50% chance within a few years.
I presented with symptoms that initially they thought was an acute process. My WBC went from around 10 in the summer with a series of tooth infections, to over 50,000 that December. I was acutely ill; started making mistakes at work, felt awful, couldn't sleep well, couldn't concentrate, all within about 3 weeks. I thought I had another tooth infection. After the 50K blood test run by my GP on Monday I was in a hem-onc's office that week.
The shock of the "cancer/leukemia" words really affected me. You've just been diagnosed, so you probably are still in shock. The doubling time of your lymphocytes is currently something to watch, but if you otherwise feel good & other cell lines aren't suddenly changing, you may reach your need for treatment feeling somewhat physically OK. That's a plus, I think.
Hi. I was diagnosed in November last year. Unmitated. trisomy 12. Cll surfaced with really bad viral infection - my lymph nodes swelled over night. I just turned 50 a moth before that. My lymphocytes went from 20-78 thousands within 3monhs. Then the growth started to slow down. We were in panick. I am still dreading the next hospital check up -Iamnot going to lie. I also did the same math- I relate a lot to what you are saying. I have a friend who lives with Cll very well for 14years. He had all the “wrong” prognostic markers at discovery - including enlarged spleen, low platelets and low RBC. He is a stubborn fella - and still figting doctors on treatments. I am not reccomending his aproach by any means. I am not planning to to follow him either. It is too risky for taste. I am learning to live with it. Not easy. But I already see a progress. You are not alone in this.
Hello Sofia, it’s so easy to understand what you write. Thank you. I hope you’re doing well.
HiI was diagnosed stage 4 at the age of 56... O and I immediately, now on Acalabeutinib. I have just turned 60, I plan to be at my daughters graduation in 2044, she is currently 4 a dher brother is 6. PMA, plus Pharma will continue to produce more drugs as the market is valuable they need us to live a long time.
Forget about this junk. It's different for everyone
I had V&O for six months, and it shut the cancer down
You won't know until you're in the therapy.
Hi EastBayDad, I too was 55 when diagnosed and now 75. There has been lots of ups and downs on the way including pre-existing conditions which have been more troubling than the CLL for me personally.
You will adapt to your diagnosis in time and gain a better understanding of CLL with all the help and advice from this wonderful forum.
My best wishes
Aerobobcat
Its really more of a lottery. I’m 13qdel Tr12. First I heard of CLL was in 2007, at the age of 47. Best guess at the time was a few years of watch and wait prior to receiving FCR.
I’ve been on watch and wait until now and actually have an appointment today to sign paperwork prior to my first treatment (O/V).
All I can say is look after your weight, try to get regular exercise, and limit junk food and alcohol.
Hi at the risk of going back to basics, one of the increasing issues as CLL treatments get more effective is that CLL patients die instead prematurely of infections. So now is the time to get vaccinations. There are lots of posts on this site about vaccinations for us. Basically it should be your new hobby getting vaccinated! It's a quick win for increasing your life expectancy. What you do now will affect your immunity in the future.
Wow, you are absorbing information very fast! Lots of us were diagnosed at a similar age, in my case 11 years ago. In UK, were don't get mutation status (until treatment needed - I can see logic, as mutations can change)., but I intend to be around for many more decades.
CLL is very heterogeneous - we all have our own journey. So looking at survival rates is interesting, but how they apply to you as an individual is less certain. (they are averages and also might look at a single treatment across CLL types)
The thing about survival rates is, by definition, they are way out of date. Researchers are measuring effectiveness of treatments 10, 15 years ago. The advances in treatment, and particularly in the different treatment paths for different CLL types, has been massive in the last 10 years. We won't know todays treatment survival rates for another, hopefully, 25+ years!
I think you are selling V+O short. I think V+O is repeatable (in US), otherwise there is 2 year VenR. Duration of remission as second line is likely to be shorter than first. You can keep going with short duration Venetoclax based treatments until remission is less than 2 years. Tris 12+ doesn't have a hazard ratio for V+O or as far as I know any other novel drug, it's an old bogey that existed for chemo (like my ATM and SF3B1). The median from CLL14 for mCLL is 5½ years, they were older and sicker being unfit for FCR/BR. Three rounds could get close to 14 years.
AVO and BOVen are on the horizon, for approval these will have to offer a longer remission than V+O or V+I. Should be repeatable (in US), that 14 years gets pushed to 17-18.
Then there is BTKi, as 2nd line maybe 4-5 years.
If you develop resistance to covalent BTKi there's non covalent BTKi. Preferred as a triple combo PVR, though as V+O has proven much better than VenR it should be POVen.
For a 54 year old with bad markers in the world of chemo treatments 19 years ago getting to 73 wasn't going to be easy. There's never been a better time to have CLL than today, the path has been smoothed for us. It's down to us to take part in trials to smooth the path for those that come after us.
cancerhealth.com/article/ch...
PS you haven't had CLL for a month, that's time from Dx, you have already had it years.
I have CLL/SLL, Trisomy 12 unmutated also. I was diagnosed at 52. I am extremely active and enjoy life each and every day. I remember the shock of finding out I have leukemia. I had always been healthy, but that’s life. I firmly believe a cure is coming. It was a wake up call to never let a day pass without enjoying it. Best of luck on your journey. Sally 🙏
🤗
I'm 42, was diagnosed around 26ish. Just finished a year of treatment for the first time. Unmutated, for reference.
I'm 55 diagnosed 8 years ago with 17p deletion, unmutated, complex karyotype. On my 4th treatment. There is a lot work being done to develop the next generation of drugs and by the time you are in 8 years like I am, there will be more options. I will be getting a stem cell transplant consult in 6 weeks. While I'm hoping what I'm will work for awhile, that is likely my next step. I'm not thrilled about running out of easy options, but the benefit of being young is that it is an option. In the meantime, I focus on feeling pretty great and looking better than I have in years which was not the case two weeks ago prior to my new treatment.
I was diagnosed at age 40, a few years in my family Dr, knowing I was worried, said he felt quite sure they could keep me going for 20 years, his prediction passed about 7 years ago. I'll be 72 shortly and still busy with life. Jerry
Have you had any treatment?
Hi, Yes I had Fludarabine twice, 2000 and 03 and O&V in 22/23. I've had my share of days in oncology but overall feeling pretty lucky.
👍👍
You are a real inspiration for those like me and in this community that it can be us too. I think about this often and it gets me down. (I know cll is very heterogeneous) but knowing that the treatments for cll are so much better also puts me in a good place. We don’t know what the future holds cll or not.
I was first diagnosed with CLL in 2010 at the age of 55. It was then that I was placed on "watch and wait." It was frustrating then - I wanted them to fix this thing NOW! And here it is 14 years later I'm still there (and here!), continuing "w&w" without being treated. About the only side effect I've experienced is some fatigue and though my white cell count has risen some, every other indicator seems to be acceptable and posing no need for treatment.
All this goes to show two things: everyone is different in how the disease treats them, and everyone is different in how they treat and deal with the disease.
Keep positive, stay knowledgeable, and enjoy life to the fullest - and all the best to you.
In some ways, you're right. If you're diagnosed in your 30s/40s, the odds are you ARE more likely to die FROM CLL than someone diagnosed at the median age of 70 (and the 50% diagnosed afterwards). You have many more decades to live with the disease, and that will be a factor.
Equally, you ARE more likely to need treatment than those diagnosed in their 70s or older. Again, you just have more years to allow the disease to progress AND your body has already gotten the disease earlier, so you are more likely to have a more rapid path than an older diagnosed individual with the same markers.
So, I've always thought that advice given here should be age and marker appropriate. To say 30% of folks never need treatment is entirely misleading to a newly diagnosed 11q or 17P deleted 40 year old. The odds that will be them if they live into their 70s/80s is about nil. So, it shouldn't even be brought up to a new young cancer patient, b/c it will just lead to later individual disappointment.
All that said, since the 2010s, the advances for treating this cancer have grown by leaps and bounds, so age is also our benefit. The longer you can delay treatment both at the start and between treatments (b/c again, young folks will probably get multiple treatments through their lives), the better off you will be long term b/c medical science keeps advancing so rapidly with this disease. It's why I do tell folks to work on their diet, exercise, sleep, and stress at diagnosis. None of that will cure you, but it can slow disease progression...and slow is where young people live.
Well as a 38 year old with garbage markers (unmutated, 17, 13, 11, whatever else) I can tell you that there's some optimism with using combination treatments in fixed time durations repeatedly vs waiting to develop refractory disease. There's probably not enough data yet that says we're all out of the woods, God knows I'm crossing my fingers, but I don't spend my days counting down to my inevitable demise.
I went from about 250k lymphocytes to 4k in two months with Venetoclax and Zanubrutinib, I'll be in treatment for about another year assuming everything goes according to plan. We're even gonna test for MRD soon (I don't think I'm quite there yet, but why not?)
I wake up everyday and try. Try to be a good person, try to do the things that make me happy. Right now that's working for me, and keeping me focused in the present, and what's really important. Don't worry so much about the fuzzy math.
When I was first diagnosed at age 43 (and probably had it for at least 4 years before that) I wondered the same thing about the survival stats. I'm 54 now and still on Watch and Wait. My last blood work showed that my ALC/WBC is almost half what it was when I was diagnosed 11 years ago and everything else is in the normal range (except IGg which is just slightly below normal). What I am trying to get across is that everybody is different and it could potentially be many years or even decades before you even need to start treatment. My GP says he has a patient that has CLL with no treatment and on watch and wait for 22 years. Once you start there will be multiple treatments that can be used consecutively further extending the time you live with CLL potentially by decades. Some treatments like FCR are showing very long remissions (10+ years)in some people and that is just one of the available treatments for us younger patients. During that time new treatments are always coming out that can add on to what you have tried. I don't think it is unreasonable to think there will be a curative treatment in the next 10 years.
Hi, when I was first diagnosed I was told the average life span was 7 years. That was 10 years ago. I am now on my 2nd line treatment (Venetoclax + Rituxamib) with plenty of options to follow. Advances are being made all the time, hopefully there will be more that will allow us to live to a ripe old age!
Hello EastBayDad
There are some many variables in time of survival, I agree with AussieNeil and cajunjeff. In 2018 I started treatment with B+R, then V&O in 2022. I was diagnosed in 2017. Barring any new treatments coming down the pike can go back and redo either B+R or V&O because those treatments were not discontinued due to intolerance. I have now in remission and starting on 8 years since diagnose. Blerssings.
Has anybody heard about Mike Peters? I loved this band when I was in college.
One thing to keep in mind... survival rates are, by statistical necessity, lagging indicators. If you are reading a five-year survival rate, by definition those numbers will be for people who got treatment five (or more) years ago.
Five years ago the standard of care for CLL was something like: a chemo regimen even less targeted than today's FCR, FCR (?), and bone marrow transplants.
Today the standard of care in the US is three different immunotherapy regimens, one of which has already been superseded by newer medicines, and FCR only in very limited situations. Bone marrow transplant as a last resort / multiple R&R response.
Plus there's at least two more types of immunotherapy in trial, plus successor drugs to the ones currently in standard of care, plus CAR-T which has worked miracles in some cases but is still very early/expensive.
In that environment, survival rates are at best a general indicator.
As you indicated, CLL is an extremely wide-ranging disease in terms of outcomes. Yes, when something like 1/3 of patients don't ever need treatment and another 1/3 are in W&W for many years, the general survival rate does not give you much information for your case.
But there's still a lengthy pipeline of new drugs in front of you and you don't have to beat the disease, you just have to stay in front of the treatment development curve.
Hey, I went from initial diagnosis to clinical trial in 18 months and have kids still at home, I get it. But honestly, the medicine has come light years. It's not a walk in the park, but your odds of seeing kids' weddings and grandchildren are still very good. Don't let the numbers freak you out. CLL is so variable that the numbers don't tell you much anyway.
Great advice.
CLL definitely messes with your mind! I have the moderately dreaded 11Q, and was fast to treatment - basically a year. I had pretty much assumed my life was measured in months. This forum, and finding some good studies helped me a lot. I found a study with a good sized sample of 11Q patients and discovered their OS was 14.7 years. With FC alone over 80 % of them were alive at 12 years. And of course, now there are better treatments. The vast majority of us will be around a long time!
I was diagnosed with CLL/SLL (I’ve got the SLL variant) when I was 39 in 1994. At that stage treatment options were very limited and I was told that 10 years was about the best I could hope for. My first treatment was an autologous stem cell transplant which mean I was my own donor so no nasty graft vs host complications. First step was to get me into remission which was achieved by fludarabine mono-therapy. Next was the stem cell harvest and then the brutal BEAM chemotherapy to essentially wipe out my bone marrow prior to the re-introduction of my stem cells. At the time this was seen as a possible cure but the treatment hadn’t been around long enough to prove that the remission would hold indefinitely.
That treatment bought me more than 10 years (I relapsed in 2007). My options at that time were limited to chemotherapy (fludarabine plus cyclophosphmide). There were some discussions about monoclonal antibodies but they weren’t available on the NHS (I’ve UK based) at the time. The drug mentioned was campath (altemtuzumab) which has since been withdraw and relaunched as an MS drug. It did have significant immunosuppressant effects and I quite relieved that I didn’t receive it. Around this time M D Anderson with beginning to add rituximab to FC and the FCR combination became the gold standard for treating CLL for a considerable period. In my case the less effective FC got me into remission until 2022. A 15 year remission which in many older patients (70+) could have been seen as a cure.
My options this time around were a BTK inhibitor (acalabrutinib) or the venetoclax, rituximab time limited regimen. I’ve gone with the VR and all seems to be going well.
So what have I learnt:
• a cure is always nearly with us
• there are many more treatment options available
• the treatment is getting much easier to tolerate
• there are many more treatments in the pipeline
• providing you get a reasonably long remission, by the time you need re-treatment better drugs are available
I’ve managed nearly 30 years since diagnosis I think you should anticipate at least the same because the drugs have definitely improved and a cure really does seem to be a real possibility.
Jacques
I believe the current death rates also do not include the most current treatments because longer-term studies cannot include treatments that have only come out in the last 2 to 3 years. The inference here being that you should live longer than what is currently quoted.
This combinations seems like a real possible 1st, 2nd, or 3rd line treatment. Right?
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