Any ideas on how long someone lives with CLL / SLL?
At 66, I was recently diagnosed with CLL / SLL. Since I have few symptoms, they are "watching and waiting" for now and I realize that the prognosis varies and cannot be predicted. However, I'm trying to plan for my financial future (e.g. When should I take social security? Should I stop working?) and wondering how long I will likely live. Anyone else have any insights?
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I can’t speculate on how long you will live- but re: whether to keep working or take SS- you might ask yourself if you enjoy your work?
Is it stressful?
Can you adopt healthy habits while working, such as exercising?
Do you look forward to work days or live for the weekend?
Can you go to part time for a while to try it out?
Just another perspective.
I can only tell you I have been living with CLL since 1996 and I am now 81. Since that year I have only had oral chemo meds 3 times when my white count reached over 80. Since 2015 I have been considered stable with a white count ranging from 35-45. My oncologist tells me I will not probably die from CLL, but with it. Side note: In Dec 2022 I was diagnosed with NeuroEndrocrine cancer in my liver & I’m now having monthly injections of lanreotide. My NETS specialist still tells me I will most likely not die from it. It is a chronic cancer like CLL. My recommendation is to live your life as normally as possible! 🤗
Hi @newtothis57, I’d like to add my welcome to you along with @nana120 and @leslie2121 with their advice about your decision making while living with CLL/SLL.
While it’s more common for someone to have just one or the other of this type of non-Hodgkin lymphoma, they can happen concurrently. Both forms of the condition are considered slowly developing cancers, treatable though not curable but with positive outcomes for longevity.
SLL ~Small lymphatic leukemia generally involves the lymph glands. While CLL, Chronic lymphocytic leukemia is involved inside the bone marrow.
I’m going to toss out a few articles from dependable sources for you which will give you some helpful information.
This from medical news today.com discusses the differences between CLL and SLL
https://www.medicalnewstoday.com/articles/cll-sll
Healthline.com talks about CLL and a separate article regarding SLL. If you continue reading below there are other articles discussing affecting quality of life and managing side effects.
https://www.healthline.com/health/cll/chronic-lymphocytic-leukemia-
https://www.healthline.com/health/sll/symptoms-treatment-sll
We have a number of members with CLL or SLL or both. Try typing CLL or SLL in the search bar on top and you’ll see many discussions pop up. I know it can be frightening getting a diagnosis with the word cancer or leukemia. But you have a non-aggressive type that may not change your life very much except for the knowledge of ‘potential’. I’ve had a very aggressive forum of leukemia and in full remission now. But my main take away is live your life to the fullest. That should be a guideline whether someone has been diagnosed or not. We learn all to quickly that we’re not immortal. ☺️.
Were you thinking of retiring, before this diagnosis?
Thank you all so much for the thoughtful comments. I really enjoy my job and am currently working 3 days a week plus a two day a month weekend job at a rehab hospital. On most days I work with four year olds and they have been a ray of sunshine during a challenging time. So, I'm thinking of going down to two days a week if that works for my employer. It is so scary to hear the word cancer so this is all a learning curve! I'm really glad to be part of this online support group.
With all the new therapies available, life expectancy for those of us with CLL is basically the same as the general population.
Expect the best and practice gratitude!