My FIL has had CLL for many years, and is about 70 now. He needs to be monitored by his doctor regularly and has needed mild chemo treatments periodically, but otherwise lives a pretty normal life.
I'm so sorry. Hugs and prayers to your sister and your family.
I don't know your sister's diagnosis details, but I can tell you that I know many patients that live pretty normal lives. They get frequent monitoring and chemo/meds at different points when their numbers indicate intervention is needed.
I hope your sister's prognosis is good and her docs have a plan in place for her soon.
I'm sorry! My mom has known she's had CLL for about four years, I think (at least, that's when she told me). She didn't tell me for a bit because she didn't want to worry me, she said. My grandmother had gone through chemo for her lymphoma and she didn't want to worry me more? I don't know, but she held off telling me for a bit. So far it's not been a problem since it doesn't seem to be multiplying, but she goes in to see her oncologist every other month to get bloodwork and a check up. She's had two biopsies of lymph nodes in the past two years. We're still waiting on the results of the last one. Other than knowing she has this thing in her body that can make her very sick, she hasn't seemed to have any issues. She did stop smoking and has been more vigilant with her diet. I make sure to keep away when my kids are sick since they love to share germs and she tends to get sick more often.
It is definitely a scary diagnosis. I hope they caught it early though and that she'll be monitored closely.
Post by underwaterrhymes on Mar 16, 2017 11:42:01 GMT -5
Thanks guys.
We don't know much yet. The surgeon called her and told her and indicated her oncologist will be calling her with more details.
I'm not even positive it's CLL / SLL, because he told her it was chronic lymphocytic leukemia and small B cell lymphoma. But when I googled, CLL / SLL seemed what fit those two names and is in fact a singular diagnosis rather than a dual one S I originally thought.
I'm so sorry. Both of my parents had Lymphoma, so I'm not familiar with CLL. But I do know many types are very treatable now. I wish your sister the best and hope she has a good prognosis.
The Leukemia and Lymphoma Society is a great resource www.lls.org/
I hope you don't mind a response from a lurker, but I was diagnosed with SLL in July. I'm no expert, but I can help a little. After I had gallbladder surgery, they found Chronic Leukemia and Chronic Lymphoma, which I understand are basically the same disease. (Edited to say I mean CLL and SLL are basically the same). I was diagnosed with SLL which is more rare.
The first thing I suggest is to call the Lymphoma and Leukemia Society. They are extremely knowledgeable and kind. They helped me off the ledge at the beginning. There is also a CLL support group on facebook, but be prepared because it can be overwhelming.
It can be years before your sister will need treatment. Some people never need treatment. Hopefully, like me, your sister will be in "watch and wait". I just get blood tests every three months and see my oncologist every six months. Some call this "the good cancer" because it can be so long without having any treatment. (Believe me, no cancer is good).
The only issues I have now are fatigue, and I get over heated more easily. I also have a swollen lymph node in my neck and wear my hair down to try to cover it a bit. I have only told a select group that I have cancer.
I will be thinking of your sister, and I hope she will be in watch and wait, it's the best status you can have. If I can be of more help, please don't hesitate to ask.