Diagnosed with chronic lymphocytic leukemia: What can I do?
diagnosed with chronic lymphocytic leukemia-don"t know my options is there a cure?
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
diagnosed with chronic lymphocytic leukemia-don"t know my options is there a cure?
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
I'm one the 1% who have CLL, which is considered chronic, incurable, go into what is considered "spontaneous regression". It's not a remission, it's simply gone without treatment. Routine blood work at age 50 followed by a bone marrow biospsy based on blood work results confirmed CLL.
Next month I will be 75. My CLL smouldered for 10 years, always advancing but slowly so I never required treatment. We all know treatment is delayed as long as possible because these treatments become less effective each time they are given. At age 60 my counts stabilized then started slowing improving and by age 65 my white count and lymphocytes were back to normal. My oncologist who was my age had never never had this happen in his practice. He refused to say I was cured, just "spontaneously regressed".
After the shock and denial stages of diagnosis, I began the acceptance stage and took advantage of every day. I began more joyful finding time for my hobbies. I obsessed on my gardening. Being outside, digging in the earth, watching new life grow from my plantings connected me to God and I would give thanks for the life I had and had left to live and praised God for our glorious world. I am not a church goer, but the wonders in nature leave no doubt in my mind this world was no accident, but a gift from God. I stop traffic with my yard full of flowers. About all I found on the internet from others with CLL was to drink green tea, which I drank copious amounts of. At age 61, when my counts had stabilized for a year, but I still had CLL, a southern neighbor swore by the benefits of taking Muscadine Grape Seed Oil tablets, which was more expensive than regular grape seed oil. Sounds ridiculous, but one has to try something. I no longer drink green tea or take these tablets and my blood counts have reverted to normal now for 10 years. My oncologist still insists I get my blood checked annually. In recent years when I have a blood draw taken a few days before my appointment I read the results on line and cancel my appointment to review the results. Why bother to go in? Like most of us living with CLL after several years we know about as much as the doctors do on how to interpret the CBC. He knows I do this and will call if my CBC has issues.
My advice is to find joy in your passions because it distracts you from the worry about the future. Peace, joy and serenity can help healing.
Lori, Volunteer and Mentor- I read your profile and your successful story is encouraging and uplifting. You're a survivor and what you've been through can give others hope. I recommend others go to Lori's profile and read it.
Aw, thank you my gardenjunkie friend. It was quite the wild ride for sure. This is why I’m here:
“One day you will tell your story of how you overcame what you went through, and it will be someone else’s survival guide.” —Brené Brown”
That’s the beauty of Connect. We’re all here to help each other find hope and comfort. So I’m very happy that I’ve been able to encourage you too! You have your own amazing story. ☺️
This was one of the best experiences I had in being able to share my survival journey: https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
I just read her survival story and want to thank her for sharing. Readers can tell themselves that if Lori can fight this hard so can they. True she had a different form of leukemia, not CLL, but reading her story gives us hope that treatments, even difficult ones, can help us if we have the will power. Lori you are a true giver taking the time to inspire and mentor others.