Mamajama

[mamajama]

Hello, diagnosed in Oct. Of 2015. my prognosis is in the 33% that may never be treated. even so I do have a small swelling of a node at the back of the stomach.....anyone else in the situation...anyone else in simular situation? Thanks so much and wish everyone success in living with this desease....I'm hoping for the best.

[devonrr]

I was first told that my CLL was indolent and may never need to be treated and put on watch and wait. However, even though I had no other symptoms my high lymphocyte count of 265 caused my Hb over 14 months to start to fall below 10/100 and I started FCR treatment this spring. Everyone is different. Neither your consultant or this community can give you a definitive answer; that is the nature of the disease. What this community can do is give you hope. Many will be in the same situation as you and there will be success stories and tales of worry. You have to trust your CLL consultant and read about your disease because then you can ask questions either at your check ups or on this site.

CLL becomes a way of life, the last word being important. Stop worrying and get on with life and enjoy. People do not recognize that people with CLL have Cancer because life can be totally normal. We are special because we know we have the disease and are lucky to be monitored/treated.

[teb0513 in reply to devonrr]

Devonrr, you are spot on. I was also told my CLL was indolent and we are all unique. I am often told how "wonderful" I look, but each time I pick up a "bug", it takes away from my already fragile immune system making it more time consuming to bounce back to feeling "my normal". Do not let CLL get you down 😊. Enjoy life.

Teb0513

[fayeander in reply to teb0513]

Hi Teb,

Wonderful words of encouragement!

As I always stress to everyone, no matter what the situation, KEEP THE POSITIVE ATTITUDE!

fayeander

[annabelle63 in reply to devonrr]

Good answer Devonrr !!! I'm with you on that.

[Newdawn Administrator]

We are hoping for the best for you too mamajama. Glad your prognosis sounds so positive although as devonr says, we live in uncertainty with CLL.

Important thing though, is this enlarged node being monitored? Presumably it isn't causing any problems but I hope you're having periodic ultrasounds to make sure it's not impeding any other bodily functions.

Long may you stay 'indolent'. It's the best word in the CLL dictionary!

Newdawn

[sallylou]

I've been w&w for 3 years now. My next blood work will be in 6 months. I just live my life and really I don't think about it everyday. Wishing you lots of good luck.

[fayeander]

Hi Mamjama,

"Hoping for the best" are some of the most powerful words written! That helps you to keep a positive attitude.

I wrote to the support community a few days ago about the pain I am having in my stomach, the pain also radiates around to my back. I was concerned that it may be my spleen. I will need to make an appointment with my oncologist again to have this checked out. I think I handled my chemo treatments much better, and with more bravery than I do the text, scans, x-rays, etc., that we need along the way.

Good luck with you journey with CLL. It's just another road of life and how we handle and deal with it makes all the difference. Some days are better than others, but look up and thank God that we have another day to look forward to.

fayeander