Hi everyone. I was diagnosed a year ago with stage 0 CLL with 13 q deletion. I am worried because of a five-year survival rate that I read about.
Diagnosed with CLL: Hi everyone. I was diagnosed... - CLL Support
Diagnosed with CLL
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Rosebud16
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Welcome to the forum. I am not sure what article you read, but chances are if it’s a survival table for Cll it’s outdated. On top of that, 13q Cll can carry the most favorable prognosis for all types of Cll which Carrie’s an excellent chance to live a normal lifespan.
Here is an article I wrote for newly diagnosed people with Cll which might be helpful for you. Good luck to you.
Welcome Rosebud! Great choice to join this forum . It has a wealth of smart folks and a treasure chest of great advice and information about what we unfortunately share in common, CLL.
I’m a 13q deletion, 0 stager (like you), dx about 18 months ago and I admit after my dx I checked with Dr Google on life expectancy. Then at my next doc appt, I asked my doc that question on how long he thought I’d have to live?… after all I’m told I have the “big C” n that can be a death sentence, right? Dr Google says it might… but like cajunjeff replied, how wrong it is!
You know what my doc said?… “How long do you hope to live to?” Surprised by that answer, I said hopefully a normal life expectancy age (mid 80’s). He smiled and said, “your guess may be right, and furthermore you’ll probably die with CLL and not because of it.”
So you’ll be ok. Took me a few months after finding this forum and learning much about this quirky cancer that I came to an understanding that I’ll be ok. So focus on living your life at the fullest … n hopefully you have an excellent CLL doc to be your pilot/guide thru-out your CLL journey.
You’ll get many recommended CLL articles to read from wise n supportive people (like Cajunjeff’s priceless gems) n you’ll grow quickly to appreciate the Admins n Volunteers n all they do and say on this forum.
Last bit of advice, know there is no such thing as a dumb question to post… Post questions often!
May your CLL journey be a very good one Rosebud.
My doctor said the same. I don’t understand💔💔 why? How did I get this? I am very very sad because I have a husband who is older than I am, and I need to be here to take care of him.
You will be there for him Rosebud! … I too have same situation with my spouse n have realized I’ll be there for her. Your doc has given you same hope that you’ll be ok n likely live a long time.
As for the how did I get CLL? Many of us have pondered that same question. Many theories out there, n genetically as far as I know I’m first in my family to get it … but I did work during environmental cleanup/dismantling of a plutonium trigger bomb making facility n we lived near it for 30 years … that’s my theory how I might have gotten CLL. Who knows but now it’s time to move on and live a full life!
My other dumb question is that I sweat so much. It is just terrible during the day, and the night is awful. Does anyone else experience this?
Remember no such thing as a dumb question here n btw all your questions are great ones! In fact the sweats thing was my first post on this forum.And “how long will I live?” was my second post … n many people have asked those very questions in early CLL.
As for the nite sweats, mine went away a few months after posting my question on it. Make sure you tell your doc about your sweats.
Mine may been due to the initial stress/news of CLL? My doc wasn’t to concerned when I told him I had em since they were not drenching types. Hopefully, yours go away soon too.
Take care Rosebud and keep asking questions!!!
Hi. Welcome to the family. A wonderful forum for advice, support and friendship.
I was diagnosed at Stage IV 10 years ago when I was 57. I had 5–8 years. I am still here after10 and I have at least a runway of 10 more I think. With the advent of new treatments, none of the old tables and articles like this are worth the paper they were written on. I am thinking that I am gonna live longer because I got CLL than I would have had I not gotten it!!!
Hello Rosebud16,
I was diagnosed 16/4/2014.......l had my CLL bloods done yesterday.... they're ok... and I'm still here.....
I have the 13q deletion too. I don't know where you found the 5 year figure, but forget it. On that basis I should have expired 11 years ago. I'm treated and look forward to a normal life span.
It’s best to look forward, not back. By definition, the five year survival rate is out-of-date. Many new treatments that are much easier to take and you may not ever need treatment.
The best advice my blood cancer doctor gave me was not to worry until he was worried.
What's more, with first treatments roughly averaging starting about 5 years after diagnosis and the newer, non chemo treatments only becoming readily available about 5 years ago, (or less than that in countries other than the USA), we haven't yet had time yet to see the impact of better treatments on survival times.
The best survival statistics are probably the US SEER statistics for CLL/SLL and they've been improving over time, with over 87% of us surviving 5 years after diagnosis: healthunlocked.com/cllsuppo...
Rosebud, more importantly, you'll learn plenty of tips here on how to live long and well with CLL. Here's a collection of our best tips: healthunlocked.com/cllsuppo......
Neil
Those tips are a great resource.
My husband was diagnosed with CLL 5 year's ago and he's been taking ibruvinib, and been in remission for 4 years, and now he's got advanced prostate cancer, and on hormone treatment,but he beat it before lots of new treatments out there. Good luck on your journey.x
Thank you. I pray all goes well for you and your husband.
I read similar survival rates when I was diagnosed three years ago. When I looked into the data actually it was quite old. Obviously no one can accurately predict the future progression but since that data was collected there have been major progress with treatments. I think you can be reassured that if the latest survival data had been used the figures would be quite different.
Hi, i found its all about note using Mr Google and keeping a positive attitude. I was diagnosed at stage 4 poor risk immunophenotyping ATM Del (Monoallelic 11q Unmuted IGHV...16 months ago , straight to treatment. I am 58 and plan to attend my youngest university graduation and see her married..... she is currently 2 and half.... keep positive, the drugs are great. By the way I also now live a pre covid , pre cll lifestyle.
Steve Smith 1964, pre-Covid life. I will try. Thank you.
If all you have is stage zero and 13 q then quit worrying because worrying will kill you sooner than the CLL🙂. Instead please fill up your profile with some information about your diagnosis and latest blood numbers. That would help with understanding your specific situation in case you have questions later.
Hi- diagnosed in 2003 and very much still here! Chrisx
Hi Rosebud, I was diagnosed nearly five years ago and found the same prognosis on Dr Google - I took on board then that it was out of date. (I’m w&w and my lymphocytes have just gone over the magic 30 in five years). The good thing is that when the “experts” calculate your life expectancy for your pension they use out of date data - I aim to prove them wrong - they’re going to make a loss on me! No guarantees and I (or you) might get run over by a bus tomorrow, but, on the whole, we’re in this for the long run. Best wishes to you (and may you avoid that homicidal bus).
Very true. I sure am happy for you. I wish and will look forward.
Hello Rosebud16
When I was diagnosed with very aggressive CLL, I had 14 months before treatment, unlike the average 5 years that AussieNeil was talking about. Five years later I am still here. My doctor told me when diagnosed that 90% of dealing with CLL is positive attitude. I have met one man who was diagnosed in 1985 and still has not required treatment. I also met two ladies at LL&S seminar who were 23 and 27 years after diagnose going strong. Coming to this forum will give you a wealth of CLL information and hope. Blessings.
Rosebud,
I have the 13q deletion and was diagnosed with CLL in 1997 at the age of 37 but had been having issues since 1993. I was in Watch & Wait for almost 22 years before starting treatment in August 2018. This year marks 25 years since my diagnosis, and my oncologist actually told me in 1997 that I probably only had 5 years to live...especially since I was so young to have CLL. Today I feel great and am doing well...have definitely proved the doctor wrong and plan on proving him wrong for many years to come! 
Praying the same for you!
My CLL is back in the normal range. However it has given me ITP which reduces my platelets and I need to take the drug Promacta 25 for and am doing ok.
In early 2011, I was told I had a 50% chance of dying within 3 years if I didn't have a bone marrow transplant. I had a complex karyotype variant, including the dreaded del 17p as well as TP53 mutations, plus other deletions. These generally didn't respond to standard chemotherapeutic agents, which were the only therapeutic option then. And I had one "transplant specialist" tell me I needed to fail chemotherapy before considering doing a bone marrow transplant.
I didn't do chemo and went with clinical trials of then-new monoclonal antibodies. I am still around, can do my ADL's unassisted, and have only been hospitalized as a precaution for Venclexta induction. Google has older data, which is correct for *previous* generations, but not now. There is a lot of interest in CLL even though it is rare, and quite a few new drugs have been developed, and more are under investigation.
Google out of date u it s a sad thing since we look for information. Thank you very much SophiaDeo.
It's not so much that Google is out of date, but that medical research facilities and publications aren't writing sensational articles and paying to be at the top of search engines. The for-profit sites write things they want to get a lot of clicks on, so they get advertiser money. They pay to be at the top of searches, so unless/until you have learned about reputable medical websites, it's easy to get confusing information. Sometimes sentences and studies are quoted out of context, incorrectly. So that's why a lot of us say "stay off Google". Once you learn about the various valid places, it's fine to read and watch stuff from those sites IMO. But until then, it's easy to get confused.
Hey Rosebud
Welcome to the club. I skimmed through a number of replies, so it isn't necessary to tell you that the five year number is totally absurd. Honestly speaking and even before we had the pill instead of chemo, I can't imagine where that five year number originated. So I'll instead just give you some personal information.
I'm four years into Watch and Wait, my WBC is around 60, 000, and I'm clearly no where near treatment. My Father also had CLL and died at age 71 after about ten years in treatment; however, he easily should have continued life. Unfortunately he had a Medicare HMO, against my advice, and oh well he didnt survive something easily resolvable. My Father's Mother also had CLL and lived to age 93. Finally her Father (my Great Grandfather) also had CLL and lived to a good old age. I was too young to remember how old he made it to with CLL, but I just remember he looked real old.
The reason most of us live to a ripe old age with CLL, is unlike regular Leukemia CLL usually doesn't spread. Regular Leukemia spreads everywhere, so they usually don't live too long. CLL doesn't usually cause our death; instead, the most prevalent cause of death for CLL patients is pneumonia. This is because one of the gravest problems that can't be helped much, is our immune systems are damaged by CLL so we can't fight infections as well as normal people. Treatment in general won't help this problem, but it does push back the number of bad White Cells to a point where they don't cause other problems for us. If CLL does spread however, it usually spreads to the Skin. Because of this issue, it is wise to see a Dermatologist for a full body scan every six months. I've been doing that since diagnosis, and I've only had a couple of easily treated Basal Cell issues.
I hope all of our input eases your mind a good bit. This isn't one of the regular dangerous cancers, and we can live to an age we likely would have made it to without the CLL
Carl
On your comment about skin manifestations, I am experiencing this too, particularly any kind of bug bite. It is horrible and frightening.
Carl, thank you for your very detailed answer. My skin has always been peaches and cream not so much now. Late to what you were saying thank you thank you!
Carl., thank you for your detailed response. I have heard that medical marijuana helps Delay pneumonia? What do you think?
Haven't heard that marijuana can deter pneumonia, and with the biological knowledge I do have I'd doubt that is possible.
I was a child of the sixties, so marijuana was a lifestyle back then. I researched it a good bit in those days and afterward in my thirties and forties. What I remember from those readings is that the main ingredient Tetrahydracannabinol has some marvelous medical benefits. The initial and major one was helping with the Nausea caused by Chemo. A second, and back then little known to most people, is it could open the airways that were restricted better than most medications available back then. Of course back then the smoke inhalation inhibited that use. The third was it could help Glaucoma better than any drug known to man (at that time).
I haven't researched it since those decades, so maybe some new medical uses have been discovered. It is also possible that medications have come onto the scene that are better than tetrahydracannabinol for Glaucoma and opening airways. I did visit my 94 year old Aunt in Manhattan last year, and she brought out a glass little tube. She told me it was her medical marijuana, and it helped her sleep and with the aches and pains of old age. So I guess now some of the beneficial effects have widened. Pneumonia however is a bacterial or viral infection (actually it can be fungal too), and tetrahydracannabinol is not an antibiotic, so I doubt it would help with pneumonia.
Carl
At diagnosis, I was told NOT to *smoke* marijuana. If you want medical marijuana benefits, eat it in some form, or use a vaporizer. Inhaling smoke from a pipe or cigarette can cause fungal spores to get deep into your lungs. And with us being immune compromised, the common fungal spores that generally don't cause infection can give immune compromised people very serious ones. My doc said he had dealt with some really nasty deep lung infections from marijuana smoking. People inhale it much deeper than cigarettes, so these infections aren't seen so much in cigarette or cigar smokers, just marijuana ones.
I found recent articles that talk about survival rates in CLL, and specifically mentions that these numbers are based on older data and the new treatments mean significantly improved expectations:
myleukemiateam.com/resource...
verywellhealth.com/cll-prog...
cancerresearchuk.org/about-...
My biggest change after this diagnosis, is that I am aware my immune system no longer acts like other, "normal" people my age. I am more careful of infection, especially respiratory ones. Currently the risk of pneumonia seems to be the most frequent cause of death. So exercise to keep our lungs as well as body healthy, avoiding polluted air, and watching/reporting anything that might be an infection anywhere on my body is the most important IMO. And I also notice, it takes longer for a cold to clear up, so I give myself some more leeway before jumping back into my "normal schedule" if I am ill.
CLLerinOzAdministratorVolunteer
Hello Rosebud16,
Earlier today, I posted about a very encouraging and recent article which summarises the way improved treatments for CLL over the past ten years have contributed to much better survival prospects for patients.
As others have explained, the figures you found through Google are more likely to be from the chemotherapy/pre-targeted therapy era in CLL and, even then, they are more likely to have referred to higher risk patients. The situation is much more positive these days, even for those with higher risk disease features.
healthunlocked.com/cllsuppo...
My doctor said that I will be need chemo at the next phase. He never mentioned in the end any other kind of treatment.
"Chemo" is a generic term for cancer treatment. You'd need to ask your doctor which treatment he has in in mind, but it's likely to be a better treatment if you ever get to the point of needing treatment. There are other supportive treatments that some of us may need to counter our reduced immunity.
As you've read, life expectancies with CLL have dramatically improved with the new "targeted therapy" treatments. In our community, we tend to use "chemo" to differentiate these older treatments. Those work by disrupting the DNA copying process during CLL cell division. They don't work well when our CLL already has DNA damage that has removed or corrupted the programmed death processes (apoptosis) present in healthy cells. You can still come across old information about the poorer survival times when our CLL has 17p del, mutated TP53, or ATM deletion.
Targeted therapies rely on other apoptosis mechanisms, dramatically improving survival times for those with these more challenging markers. Also, treatment with the older chemo drugs, tended to select for tougher to treat sub-clones, which could have even been produced by the DNA corruption. While we've seen significant improvements in patients treated with the older "chemo" treatments then given a targeted therapy treatment when they relapsed, survival times are even better when the first treatment is a targeted therapy.
You asked earlier about the normal platelet count range. Depending on your pathology lab, it's typically between 150 and 450, but we can get by with counts much, much lower than 150. You are welcome to share your counts in another post for community feedback. We even have spreadsheet templates for members who wish to track trends.
Neil
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