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What is the prognosis of living with CLL beyond 20 years?
Blood Cancers & Disorders | Last Active: Jun 5 3:41pm | Replies (7)Comment receiving replies
Welcome to Connect @traillens47. You’re looking for information of the prognosis of living with CLL beyond 20 years. From my perspective of having had a very aggressive form of leukemia, anyone living healthfully for 20+years with a chronic form of leukemia is enjoying a pretty normal life span.
Without treatment CLL and SLL both tend to develop slowly over years. They are essentially the same disease it just depends on where most of the cancer cells are concentrated. CLL is found in the blood and marrow of a patients, while with SLL the disease is in the lymph nodes. From my understanding, the distinction between CLL and SLL does not influence the outlook of the disease and they’re both treated the same as the cells are indistinguishable under a microscope.
Here’s a little informational article comparing CLL to SLL:
https://www.healthline.com/health/leukemia/cll-vs-sll
While searching for statistics on patient survival beyond 20 years, the reports I did find seemed outdated because of the changes in treatments over the past 20 years. CLL/SLL are still not ‘curable’ but with new treatments that are now available, the disease is often caught earlier and people are monitored more closely. When treatment is warranted, the newer, targeted drugs can make a huge different in slowing the progression of disease giving patients a pretty normal life span.
I wasn’t familiar with Pyoderma gangrenosum, but what I found is that it’s an inflammatory skin disease and people with underlying conditions, such as blood disorders are more prone to developing this condition. This would be a good question to ask your doctor about the relationship between your SLL/CLL and pyoderma gangrenosum. I’m not a medical professional but had AML. After treatment, I did develop a couple of skin issues that are now gone. But they were felt to be a relationship with my compromised immune system and nothing to do with the cancer itself.
https://www.merckmanuals.com/home/skin-disorders/hypersensitivity-and-reactive-skin-disorders/pyoderma-gangrenosumHave you been in treatment for your CLL for the past 15 years? What does your oncologist suggest now that you’ve also been diagnosed with SLL?
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Thank you Lori.
I have been receiving IVIG, or Privigen infusions every 4-6 weeks since 2010.
This is my second visit with Pyoderma Gangrenosum. It happened in 2016 and appeared on my leg. My dermatologist tried to diagnose it and when I showed it to the PA in my oncologist office she said it was "just a bug bite.". Ha ha. The dermatologist finally did a biopsy which confirmed PG. I underwent chemo and multiple experimental treatments and skin grafts to finally heal the PG but I was left with a large, deep scar on my thigh. Since then I have been seeing several new PA's and getting IVIG routinely. Six weeks ago I had blood work and the PA happily said everything looks fine but if you want the IVIG infusion we can do it. I began to compare test results and they didn't look right to me so I talked to my internist and he is the one that contacted the oncologist to do more thorough blood work which showed the SLL. Last week I noticed a slight itch on my face with a little sore which became quite large and inflamed. God bless my dermatologist who saw me the same day and confirmed it was PG on my face and immediately injected it with steroids. Had more blood work today and the numbers look even worse than 2 weeks ago. I'll see the oncologist Friday.
I lead an extremely active life and have managed to ignore the CLL except for keeping my appointments. This rapid change has really knocked the wind out of my sails and as I am approaching the 20 year mark Im quite concerned about what to expect . I don't know if you've seen pics of PG but it is very ugly and to have that on my face along with CLL/SLL is a frightening prospect. It really has become overwhelming and that kind of stress makes things much worse. I do wish there was more information about the prognosis at 20 years.
Thank you for your thoughts Lori. I can tell you I won't deal with a PA ever again!