Who Here Has Cll? What Stage? How Long?
Hi I’m Stage 1 of cll and wondering what’s next?
There is help for you. Ask your oncology office about organizations. I got help when I was
Diagnosed at age 65 . I’m 90 now and doing well.
Best of luck.
Carolyn Kiser🤗
I am in 0-1 stage of CLL and I am doing okay. ☺️ DId your oncologist say you were in watch and wait? Do you have a lot of symptoms? A lot depends on your hematologist/oncologist and how aggressive your CLL is. My CLL is so very slow growing that I thought I did not really have it and it was a mistake, but my oncologist says, I do have CLL, but right now, it has stabilized, so all my blood work looks decent and I only have just a few symptoms, so I am very grateful! I am in watch and wait. If you are in watch and wait, find out as much as you can about the disease, ask a lot of questions, eat healthy, exercise, and stay connected to your support system. This group has so much wisdom and experience with so many things, like knowledge of medications, comments about treatment. They have good ideas and have resources too!
Stay positive even on the tough days and it will help.
I personally pray, exercise, read all I can about CLL, I stay connected with the group and try to keep a positive attitude. Check out clinical trials too and live your life, have fun, endure the hard times and reach out. We all have something to share with each other that may be helpful. 🤗Make sure you understand the blood counts from all the blood tests you will probably have, so you know what they mean and can ask your oncologist anything you don't understand. 😊 Oncologists are very busy and yet they will take time to answer your questions, at least that has been my experience. Go prepared with a list of questions, it helps. 😉 You probably already know all this, but just in case you don't...
Again good luck!!! We have all be added to an exclusive group none us wanted to join, but since we are in the group, we make the best of it! 😄
There are foundations out there that will help you pay for your meds. Ask the nurses at your cancer clinic. They are life savers. The first year the foundation started helping after I spent a few thousand dollars, and the next year they started from dollar one. DO THIS.
W & w began in 2015. Platelets went to 3 in (Phone number can only be seen by the question and answer creators) of Imbruvica started then with little side effects. Very dry skin though. I have heart disease and failure too, plus throw in sleep apnea. Installed an ICD in my chest to run my heart in 2015. Helping others helps me feel better. I get a little fatigued by the end of the day, and often can't fall asleep. But I am ok. With virtual school, I am helping to educate my 6 year-old grandson. I love this site for support.
Hopefully nothing for many years but blood work every few months and check-ups!
I went 13 years before having problems this year mostly due to my secondary condition called Autoimmune Hemolytic Anemia. My hemoglobin number got real low while they were working on lowering my white count.
Who On Here Has CLL Stage 4? How Long Have You Known That You Have CLL?
Has Anyone Else Noticed Blood Accumulating In Joints That Had To Be Removed With A Needle?
I Have Been Diagnosed With CLL.. 2 Mths Ago I Noticed A Lump Under My Chin And Now Many Swollen Nodes Which Cat Scan Showed Many.