Anyone have chronic lymphocytic leukemia (CLL)?

in 2010 my husband had an oncologist that said. no symptoms stage 0 we will watch and wait too, I happened to come across a team of Oncologist specializing in thyroid cancer on line, one Physician said never watch and wait, so I did more research, left Virginia and flew to Houston Texas Anderson MD Cancer Center, they could not believe I was not referred as my husband was really healthy looking and still working, but they seen us anyway, Miracle number 1, took lots of blood, we spent the night there and next day, they said bad news, good news , your husband has less than one year to live, his markers indicate he is asymptomatic and cancer chronic lymphatic leukemia is aggressive marker 17 and 53, that same day the target chemo had just been approved by the FDA, my husband was one of the first patients outside the trial to start on it, he was able to stay on it 6 years before his body rejected it, but they started a new target chemo and after 3 years he was cancer free over 3 years, then in January this year CLL showed up again, he just started back on new treatment, his platelets really low at 69,000 , and many many enlarged lymph nodes, bottom line, never wait and see, wishing you the best, Oh and ask for a more in depth blood panel that detects any abnormal markers. Best Wishes to you.

When my oncologist diagnosed me I was 29 and he said "you will have this your whole life and it will kill you". I wish I had some of yall's doctors that were more encouraging. It's been a difficult 10 years dragging those words around with me into everything I try to do.

Welcome, @ksandusky86. I’m just blown away with the callousness of your oncologist with regards to your diagnosis of CLL. Talk about hanging a 50 pound sack of despair around your neck with a comment like that! No wonder you’re feeling weighed down with negativity.

First thing I’d suggest is finding another oncologist. We don’t have to be BFFs with our doctor but having one with a defeatist attitude is a real downer! From my understanding, CLL statistically remains one of the more treatable forms of leukemia. It’s often very slow to develop and for many patients, treatment can be delayed for years. The newer treatments available now are highly successful in helping to keep the condition under control. Telling you that you’re going to die from CLL, in my opinion, was inappropriate. Obviously life holds no guarantees and none of us can avoid ‘pushing up daisies from the underside’ at some point. But that comment just seems heavy handed. Words have consequences and this obviously impacted you for 10 years already.
So now it’s time for new words. Live your life! You’ve had 10 years of worrying about something that hasn’t happened. At 39, you could have another 50+ years ahead of you to enjoy your family, friends, hobbies and activities that bring meaning to your days. Work with the premise that “if something happens, then I’ll deal with it”. It’s so much healthier than living with worry and fear.

“Fear does not stop death. It stops life
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.”

You haven’t mentioned if you are currently in treatment? What has your oncologist discussed with you? Are you in active surveillance?

My first oncologist told me that CLL would probably not take my life and that I would have it the rest of my life, so I should live my life as though I had never heard about it! He, also, said new treatments are discovered every day! BTW, I was diagnosed in 1996 and I am now 83.

Thank you for this reply, @nana120, https://connect.mayoclinic.org/comment/1294132/

I think it’s exactly the type of positive and encouraging message that @ksandusky86 needs to hear about their CLL diagnosis. You were diagnosed almost 30 years ago, with only 3 treatments and now stable for the last 9 or so years! This will definitely help to counter-act the negativity of their oncologist. ☺️

Do you recall what the treatments were?

in 2010 my husband had an oncologist that said. no symptoms stage 0 we will watch and wait too, I happened to come across a team of Oncologist specializing in thyroid cancer on line, one Physician said never watch and wait, so I did more research, left Virginia and flew to Houston Texas Anderson MD Cancer Center, they could not believe I was not referred as my husband was really healthy looking and still working, but they seen us anyway, Miracle number 1, took lots of blood, we spent the night there and next day, they said bad news, good news , your husband has less than one year to live, his markers indicate he is asymptomatic and cancer chronic lymphatic leukemia is aggressive marker 17 and 53, that same day the target chemo had just been approved by the FDA, my husband was one of the first patients outside the trial to start on it, he was able to stay on it 6 years before his body rejected it, but they started a new target chemo and after 3 years he was cancer free over 3 years, then in January this year CLL showed up again, he just started back on new treatment, his platelets really low at 69,000 , and many many enlarged lymph nodes, bottom line, never wait and see, wishing you the best, Oh and ask for a more in depth blood panel that detects any abnormal markers. Best Wishes to you.

Yes, since 1996 with only having oral chemo 3 time when my white count became 80-100. I have been stable since 2015 with just blood work twice a year to check. It was scary at first, but I remember my first oncologist telling me to go about my life as though nothing had changed. It took a while, but eventually I did.

Welcome, @ksandusky86. I’m just blown away with the callousness of your oncologist with regards to your diagnosis of CLL. Talk about hanging a 50 pound sack of despair around your neck with a comment like that! No wonder you’re feeling weighed down with negativity.

First thing I’d suggest is finding another oncologist. We don’t have to be BFFs with our doctor but having one with a defeatist attitude is a real downer! From my understanding, CLL statistically remains one of the more treatable forms of leukemia. It’s often very slow to develop and for many patients, treatment can be delayed for years. The newer treatments available now are highly successful in helping to keep the condition under control. Telling you that you’re going to die from CLL, in my opinion, was inappropriate. Obviously life holds no guarantees and none of us can avoid ‘pushing up daisies from the underside’ at some point. But that comment just seems heavy handed. Words have consequences and this obviously impacted you for 10 years already.
So now it’s time for new words. Live your life! You’ve had 10 years of worrying about something that hasn’t happened. At 39, you could have another 50+ years ahead of you to enjoy your family, friends, hobbies and activities that bring meaning to your days. Work with the premise that “if something happens, then I’ll deal with it”. It’s so much healthier than living with worry and fear.

“Fear does not stop death. It stops life
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.”

You haven’t mentioned if you are currently in treatment? What has your oncologist discussed with you? Are you in active surveillance?