Found this site today when looking up some health concerns. Reading with tears in my eyes as I see others dealing with the same fears I am experiencing. I am 66, at what my oncologist calls stage 0.
Since diagnosis, through tests, the doctor found a mass in my right ovary and scheduled surgery. I was expecting the worst, but am now 5 weeks post surgery. No cancer was found! Whew!
Looking forward to learning how to live my life without so much fear of the future (unknown) or, lack of a future.
Hally
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Hallyho
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Welcome to “the group no one wanted to join” Hally. I hope you find us supportive and benefit from the experience and detailed information available here. Your staging at “0” and news about the mass sound very good. Check out some of the pinned posts for newly diagnosed people, and ask lots of questions. I was quite frightened about my future when I was first diagnosed, but the support and information here has been very helpful and I feel much more optimistic that I will adjust and manage this disease. The posts by the administrators and volunteers are really good.Take care and know that you are not alone.🙂
Welcome! Please try to focus on the "CHRONIC" part of the CLL diagnosis. We're about the same age, and the word "leukemia" has generally meant something urgent and immediately life threatening to our generation, I think. With CLL it usually isn't. We have a lot of non-medical-language type posts with explanations of what the various terms your doc & labwork tests mean. Perhaps start by checking out the "Pinned Posts" sections, on how to navigate this website, this forum, and the basics of our shared disease. Or just read the various posts in what ever order strikes you, it's up to you. Comment as you please, there's no "requirement" to participate in discussions. I'll mention we have people here whose diagnosis was 20+ years ago, and that about 1/3 of people with our diagnosis don't even get to the point of needing treatment. Just an awareness that our immune system is a bit off, and may not react like it did when we were younger and didn't have this condition.
So colds may be more frequent, and take longer to clear up. Skin wounds may not heal as fast. There may be other differences, depending on what your body decides to do. You may have other disease states that might impact things (diabetes, heart disease, etc.) But one thing unlikely is that you must "do something" immediately, within days, or something awful will happen. Follow your docs recommendation, ask questions if you don't understand.
So glad further testing for sussing out your CLL details uncovered another issue before that one got worse.
you’ve joined a great forum. I was diagnosed in 2018 at 47 and felt the same as your feeling.
I was in fear I wouldn’t be around because of the word cancer. As I learned more about this condition my fears started to fade.
My Cll specialist tells me to go enjoy life and that I may never need treatment and If I did I would be treated with a pill that’s 95% effective. He told me John your not going to die from the condition you’ll die with it so he told me to relax.
You’ll be told to stay away from Google as you’ll get outdated and wrong information that will cause more unneeded anxiety. I strongly agree and I don’t Google anything about this.
Again your in a great forum, on this you’ll get solid advise by very intelligent members.
Welcome Hallyho! Great choice to check out this forum, it’s a treasure full of great advice and support from many wise-ones.
I too was dx “stage 0” 18 months ago n that’s a “good cancer stage” if there is anything good about finding out you have cancer? You’ll likely be told to Wait n Watch (W&W acronym … there’s plenty acronyms to learn and a pinned post dedicated to just that to help you understand folks shorthand here).
Quick upfront tip… you should “lock” your posts so only this community can view it and it’s replies, otherwise it could head out to the wild web world.
W&W is ok (could be worse!) .. it just means no immediate treatment needed and in fact 1/4-1/3 of CLLers dx (diagnosed) never need treatment!… n You might be one! N “if” you ever need treatment, new good ones are available … your big C is NOT terminal, it’s a chronic cancer, so you’ll be ok, help is there if needed.
So you’ll be bombed with tons of great articles to read and things to learn … but suggest take it in slowly, it’s not a race and you have lots of time to soak in what this unique cancer is all about. And… Ask questions in this forum, none are stupid questions. We r here to listen n help. Great support group this is.
3 huge advice I have learned in the short dx time I’ve been in are:
1. Be sure you find a great CLL doc, if you can .. one that specializes in seeing many if not all patients with CLL. Big key! That doc will be your wise pilot thru the CLL journey. So pick wisely! There is a reference list of great CLL docs on the LLS website.
2. This cancer is more easily susceptible to virus, infections, etc., as our immune systems are not A+… (a lower grade it is) and so we need to be aware and protect ourselves from viruses best we can (eg, Covid, flu, etc), n infections, etc. Not to scare you, but .. to let you know it’s important. Suggest discuss with your doc about getting appropriate Covid shots, flu shot, pneumonia shot, shingles shots and other vaccines … it just might keep you out of the hospital.
3. Life life! Key here is not to get grounded downwards that you have cancer. Instead… Adjust! Your gonna likely be on W&W for years, so keep on keeping on enjoying life to its fullest. Huge advice I got early on … it’s so important to take care of yourself mentally and physically n not let the Big C control you. You control it. Enjoy life, n stay positive n strong!
Well enough with the advice n or “preaching”, but thought I’d pass along the big 3 advices that many wise ones here gave me when I joined. They are priceless.
Good journey ahead Hallyho. Love your handle name choice! Sounds up-lifting/positive!
Hi,Positive attitude and living life to the full has been my approach.
I was diagnosed Stage 4, 17 months ago, asymptomatic. I had an immediate 2 unit transfusion and started on 6 cycles of Obinatuzamab with Ibrutinib.... 240 days later I was in remission, July 2021. I am 58 and a full time Dad to my 4 and 2 Yr olds. From Jan 2022 I now have returned to a full pre Covid pre CLL lifestyle and enjoying every minute. To be honest my only remind of my CLL is twice daily acalabrutinib tablet.y6.6y
Hallyho, I know the feeling. A mammogram found a mass on my left breast. I had to get a biopsy done in 2 weeks. I was devastated. When they re-scanned me, it was missing! It was only a shadow they said. All that worry for nothing, but glad it was a false positive. I'm glad your results were negative too. Live, Love, Laugh...
Welcome to the group. Wonderful and encouraging group. I am stage 2 but I have had cll from 2007 and I am still on w&w. This group has wonderful information to guide you and calm your thoughts. Kathyg
Hallyho,Welcome from a wife of husband w/Cll (63 y.o. w&w since 2020).
May you find much comfort within this group of beyond AMAZING folk.
When I was first diagnosed with CLL, my GP gave me some great advice, "90% of dealing with CLL is your positive attitude". Your concern is normal and as time and education pass, you will start to enjoy life again. Blessings.
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Newly diagnosed with CLL
