Shit, I'm sorry. I don't have personal experience, but I did a lot of volunteer work with the Leukemia and Lymphoma Society, and I know from talking to patients that LLS has a ton of patient and family services. Part of their goal is to help educate at the early/diagnosis stages when everything can seem so overwhelming. They even have a live chat on their website. They may be a good resource for you, your sister, and the family.
My aunt has CLL/SLL and was diagnosed over 25 years ago. She has needed infrequent chemo treatments; I am only aware of 3 in the time since her diagnosis. Treatment is certainly not fun, but she lives normally between times.
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.
Much love to you. I hope you get some answers soon and a treatment plan. Like many others have said both CLL and SLL often take the "watch and wait" treatment plan. They are two different diagnoses. CLL is abnormal B-cells in the blood and SLL is abnormal B-cells in the lymph nodes. I'm sorry your family is going through this.
I don't know anything about this specific diagnosis, but I am so sorry. If you need some advice on how to even figure out what help to ask for, feel free to PM now. I know your head is reeling right now. But people will want to help and figuring out what to ask for can be challenging. Hugs to you and your family.
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.
Much love to you. I hope you get some answers soon and a treatment plan. Like many others have said both CLL and SLL often take the "watch and wait" treatment plan. They are two different diagnoses. CLL is abnormal B-cells in the blood and SLL is abnormal B-cells in the lymph nodes. I'm sorry your family is going through this.
Okay, I was looking at this, which indicates that they used to be diagnosed as separate diseases but now are used interchangeably and together.
Can you explain it so I can understand a little better? She doesn't meet with the oncologist until next Wednesday. Since her lymph nodes were so large, her surgeon indicated he thought treatment would begin soon and they wouldn't be doing the watch and wait approach. He didn't say CLL / SLL specifically, but rather the two longer names and when I googled them together this is what popped up. The link above says that because they are so similar they now just use the terms in conjunction with each other a lot of the time. Thank you. I'm a lot calmer. Now, but it's so much to take in that any clarification you can offer is appreciated. ❤
I am so sorry about her diagnosis. I hope she is able to get some good information and a treatment plan that she is comfortable with. She is in my prayers.
"Why would you ruin perfectly good peanuts by adding candy corn? That's like saying hey, I have these awesome nachos, guess I better add some dryer lint." - Nonny
I'm not too active on this board, but I wanted to reply. My dad is going on 7 years of being in remission from Diffused Large B-Cell Lymphoma. He was treated in our hometown of Houston at MD Anderson. He went through multiple rounds of chemo and received a stem cell transplant (he was his own donor) and thankfully been in remission ever since.
My best advice to you is to take things day by day. Your sister's main focused is on her health, so a great way for you to be involved is to go to appointments with her and take notes (if she will let you), buy groceries, maybe learn to make healthier meals. With my dad I immersed myself in finding ways to be a part of his treatment, it gave me a sense of purpose as a caregiver and allowed my dad to focus on getting healthy. Once you know her exact diagnosis, search Facebook to see if you can find any groups. I found one geared towards Lymphoma/Stem Cell patients/caregivers/survivors and got a lot of amazing tips and support.
Lots of prayers being sent to your sister and family <3