Today is my cancerversary. I found out I had CLL 8 years ago. But, the reason I celebrate today is because when I got the news and stayed up all night researching the disease I read that the average life span with my markers was 8 years. 8 years!!! When I mentioned this to the hematologist I was seeing she just looked at me sadly and shook her head, yes. Well, here I am 8 years later. Take that!
And I just happened to get my follow up ctscan results and all is clear! The nodes I had in my neck seem to have reduced (maybe from ivig?). Anyway, hang in there everyone and thank your lucky stars that the landscape has changed so drastically than that dreadful day 8 years ago!
❤️
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CoCoLuna11
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I'm happy you're here... so that l can say... I'm happy you're here.... and I'm happy I'm here (dx'd 5 and a half year's ago) so that l can say.... I'm happy we're here❤️
Such wonderful news, and thank you for sharing this uplifting post with all of us too.
You words reminded me of the hema./oncol. I was seeing when I was first diagnosed, because I had a very similar experience as well. But as you say so perfectly...take that! 🙂
Sushi! I have been reading your posts and your sentiments are all too familiar. I think you often say what a lot of us feel (or have felt) from time to time. Know this will get easier for you. That’s not to say having CLL is a delight. I’d still rather not 😉 and it certainly comes with some ups and downs but I no longer believe CLL alone is going to get me (or you) 😊
Louie replied to Sushibruno within your thread. If you look next to the name of the person replying it will show who the reply is directed to. There are often responses to multiple individuals within a thread of replies.
Everything I found when diagnosed said I had 5 years at most. That was 17 years ago and I'm still here! Both Dr. Google and my first oncologist (an idiot) knew nothing about CLL!
I guess the issue with Louie was more complicated. I’m glad that you are back to one person!
I got a little sentimental when I read this. Thank you so much for this, when I read responses like this it makes me stronger to go on and live life. Thank you, Misty 🙂.
Thanks for your inspiring post CoCo...I am coming up on 7 years in November. At that time, my prognosis was 6 years based on my markers. I too found a CLL specialist and I am feeling well with normal lab results thanks to Acalabrutinib. So much hope for all of us. Wishing you continued excellent health and many more cancerversary celebrations
Nan
Thank you Nan (and everyone)! Here’s to outdated statistics and poorly informed doctors 🥂
With respect to survival times, it takes quite a few more than 10 years to determine the 10 year survival statistics for new treatments. If you are on a trial, it can take a few years for sufficient enrollments to build to statistically significant numbers, then those enrolled need to complete the treatment (if it is time limited). Non-chemo time limited protocols are still new and take from over a year to 2 years+. Then there's the 10+ year wait before someone finally collates the statistics, writes and publishes a report, which in a peer reviewed publication can take up to 18 months in some fields. Thankfully the delay for medical journals is much less - around 3 months or so, but it all adds up, so it can easily be 15 years before we learn about improved survival statistics!
Of course, Google never forgets, so we are still reading survival statistics from last century!
No, I was using my phone for all my posts on this thread. I didn’t even know I had another membership.
Right, I don’t really blame anyone for those survival rates as I believe they were likely based on the available data at the time. It wasn’t until I dug deeper that I found out things were already looking more hopeful. I still look forward to hearing longer term results from my Bendamustine/Gazyva trial in 2015 (even if it is the dreaded chemo). And waiting is the price we all need to pay for peer reviewed, valid results.
With respect to your 'split personality ' are you sometimes replying from an email notification and other times from an open browser tab, or perhaps using a browser and the iPhone/iPad app or perhaps two different browsers on your phone? That could explain your dual account replies.
Given you haven't used the Louie username much, perhaps you can sign off from that account? You'll need to go to that account healthunlocked.com/user/lou..., select 'Settings' from the menu when you select your avatar on the top right and then go to the bottom of the Settings page and select 'I want to close my account'.
Contact support@healthunlocked.com if you need assistance.
I must admit, it's a clever way of doubling your survival time!!
I was diagnosed 5 years ago and Google told me I had about 5 years to live. That first year was pure hell for me. Today I am doing well, alive and kicking.
My Dr. told me that I was lucky to have CLL and then I read Google , then I read the studies limitations that said they stop survivor monitoring after 5 years and thankfully I found this forum.
Thanks to all for sharing your experiences and information this is very valuable for me.
Cancerversary!! I never heard that one before. So now I can say my wife celebrated her 5th cancerversary in July. We too were led to believe (pre-Venclexa FDA approval) she probably only had 2 years to live with 17p Tp53 and complex karyotype.
Once again, God and prayers trumped Dr. Google and other out dated sights. And many thanks for this sight that gave us hope, led us to some great videos by CLL specialists and alerted us to good choices that were breaking on the horizon.
Congratulations! When I was diagnosed they gave me 5 yrs. , that was 19yrs ago. You’ve got to catch up to me! Seriously you have a wonderful day celebrating. Keep up the good work.
Back in 2007 a well known cancer website ( not Dr Google ) gave me 3-5 years ! Immediately wrote the will and the bucket list. It was a short list and going to a Test match at Lords was the last to be ticked off several years ago.
Well done! Still here! Like you I was diagnosed with CLL 9 years ago. I am 79 and active. Own business, Yoga, Tai Chi, learning French, studying Family History.
Still on Watch & Wait - no treatment. First year after diagnose I was in shock & disbelieve. Caused depression at times. Still no symptoms. So, what is going on?
Have learnt to live with it, sort of, but wish I had not been told til treatment was required.
I’m totally in agreement with that. I thought I had been given a death sentence 2 years ago. Depression and anxiety, heart palpitations, the works. Now I have accepted it and just try to get on with life. No heart palpitations now. Still get depressed from time to time, but so do 1 in 4 of us. Biggest stress is when due for my regular consultation. I would prefer not to have been told as I continue on watch and wait, but you can’t unknow something
It's been 9 years now since diagnosed and everything is going well. And again for someone just diagnosed stay away from Dr. Google, he only gave me 5 years...lol
Well I'm about six months ahead of you but I had much less stressful introduction to CLL. My GP said he'd suspected I'd had it for about a year but when he confirmed it and recommended I see an Oncologist he said it was almost always a very treatable cancer and my first Oncologist gave me the "Your might die with it but you most likely won't die from it line". All this was 8 1/2 years ago and as luck would have it my six month follow up with the Oncologist is today, just bloodwork and a talk I expect but I always get a little nervous.
I do read the posts here and I realize that some people have some big challenges with the treatments available but I think the majority of us just cruise on with our lives with a few extra concerns that others don't have.
So happy for you. I'm in my 7th year since diagnosis. Glad those statistics are no longer the norm, thanks to all the great advances that have been made.
I just turned 60 and plan on living a long life. 🦹♂️Ya...so take that cll.
Same here. I got diagnosed on March 13, 2013...lot's of 13s....they told me 5 years. I'm now cancer free MRD negative in blood and marrow, 18 months since the end of the treatment. . Thanks to the Captivate trial and the superb team of Dr Thomas Kipps at UCSD More Cancer Center.
The treatment was a 15 month fix duration. It ended 18 months ago and I'm still MRD negative in both blood and bone marrow. I still can't believe why people continue to get FCR.
Ibrutinib + Venetoclax. This has been my only treatment.
Wonderful to hear this heart warming experience. Can I ask if you have had any form of treatment. I'm reading everyone's replies but can't determine where everyone is on w&w or have had treatment.
Hi Tobago, in my case I was diagnosed in 2012 because of a relatively high WBC and slightly enlarged lymph nodes. Otherwise, felt great and fortunately that has been the case for 8 years. I did need treatment in 2015 because my count reached over 200. Not sure we would still treat based on that. I was in a trial for Bendamustine/Gazyva. Non chemo options were still limited at this time and I sought out 3 specialist opinions that concurred with BG. I had a weird immune thing in my colon removed last year that I suspect is indirectly tied to CLL to otherwise wouldn’t know I have it☺️
I’m with EllieOak! My diagnosis was confirmed on 20 September 2001 and I read a lot of research articles that seemed to indicate 8 years would be a good life span from that point. I’m still here and currently on the Venetoclax Venice II trial. Wishing you many years to come.
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An uncertain diagnosis
How is "remission" defined for CLL?
Anyone else get this?
I was diagnosed 8 years ago today
Sudden extreme change for the better. Anyone else experience this?
