Chronic Lymphocytic Leukemia (CLL) Support Group
Chronic lymphocytic leukemia (or "chronic lymphoid leukemia") CLL, is a cancer in which too many lymphocytes (a type of white blood cells) are produced. CLL is the most-diagnosed form of leukemia in adults. Men are twice as likely to develop CLL as women, however the key risk factor is age: over 75% of new cases are diagnosed in patients over age 50.
My mom (my best friend) was diagnosed with CLL a year ago today. I have spent the last year living in a fog of horror, shock, fear. She has decided not to tell anyone about it with a few exceptions. I really just want to talk to other people who are going through this so that I can be as informed as possible for the years ahead.
Hers isn't watch and wait unfortunately and it progressed pretty quickly. Plus we just found out she has a 17p deletion (she found out through a bone marrow biopsy). She was put on Ibrutinib and so far it seems like it might be working!!!
Does anyone have a 17p deletion? I'm interested to know what kind of treatments you are being prescribed. The doctors seem really excited about Ibrutinib as a new treatment. It's just been FDA approved and is only approved as a second line treatment unless you have a 17p deletion in which case normal chemo doesn't work. Seems to have way less side effects than the more common FCR?
My mom is a super healthy works-out-twice-a-day never smokes, never drinks person so this was one of those shocks that can't really be described. Things are starting to go well, I hope, after all the worst news. We are all starting to be able to breathe a little bit. Tell me your story, ask me questions if you are newly diagnosed (I have a LOT of information since I am the main caregiver), let me know if you have any similar experience. Talk to me!
Good thoughts to everyone
Brianna
Hers isn't watch and wait unfortunately and it progressed pretty quickly. Plus we just found out she has a 17p deletion (she found out through a bone marrow biopsy). She was put on Ibrutinib and so far it seems like it might be working!!!
Does anyone have a 17p deletion? I'm interested to know what kind of treatments you are being prescribed. The doctors seem really excited about Ibrutinib as a new treatment. It's just been FDA approved and is only approved as a second line treatment unless you have a 17p deletion in which case normal chemo doesn't work. Seems to have way less side effects than the more common FCR?
My mom is a super healthy works-out-twice-a-day never smokes, never drinks person so this was one of those shocks that can't really be described. Things are starting to go well, I hope, after all the worst news. We are all starting to be able to breathe a little bit. Tell me your story, ask me questions if you are newly diagnosed (I have a LOT of information since I am the main caregiver), let me know if you have any similar experience. Talk to me!
Good thoughts to everyone
Brianna
I'm so sorry about your mom but I think she will be ok. She sounds like she is in good health other than the CLL. I was diagnosed over 3 years ago after having an elevated white count on a routine lab test. I have been very lucky because I am still at stage zero and have not had to have any treatment. My oncologist always says, "watch and wait". There is no cure but there are treatments. I understand completely how it feels to be shocked with such bad news. It does get better with time and I have faith that your mom will be ok. I have a 32 year old daughter that lives with me and she knows how you feel. I found it made things worse for me to be constantly reading articles on the intranet. Sometimes it just scares me to read that stuff. I'm not a doctor and don't understand half of what they say anyway. I just go by what my doc says. Take care and give your mom a hug for me.
It can be a bad idea to go to deep into the internet. It's easier to see the bad stuff than the good stuff. I've taken over the research portion so that she doesn't have to because it was really hurting her.
Do you mind if I ask about how you are coping day to day? I want to make sure I am doing the right things because my mom isn't the kind of person to ask for help. Good thoughts to you and hugs all around :)
I'm 56, close in age to your mom and I am sure, she like many of us, feels differently about what she needs almost daily! sometimes you just want things to feel normal and not to have those you love worry about you and other times it feels validating for people to let you know they recognize this is a big deal. You are absolutely right when you say it can feel like a relief on many levels to start treatment because at least you are active in your fight. If you have taken over the research portion, that's a lovely gift for your mom, but YOU STILL need to not overwhelm yourself and limit your searching. I am lucky enough to live near several teaching hospitals that hold conferences on CLL and I go whenever I can. I've met several people who were in the clinical trials of ibrutinib, been taking the medication for a few years and are living full and active lives- they are doing great and i am sure your mom will do just as well. If you are a student I assume you are in college- every college has a counseling center- go connect with a therapist and let them know you may need to see them periodically to have an objective, listening ear to support you. The best way to help your mom to for you yourself to remain a smart, compassionate, thriving young woman- I can tell from your posts you already demonstrate the first two qualities! You need to be proactive in your own self-care-keep reaching out!
I am also 58 years old and my daughter is 32. I'm sorry you live so far from your mom. That must be hard. I'm sure you are right that she would not want you to leave school to take care of her. For me, since it has been over 3 years since my diagnosis, I just live my life as usual. I work full time and that keeps my mind busy. I feel fine so there are some days that I don't even think about the leukemia. I would say there are more days that I don't think about it than I do think about it. I'm sure that if I start having symptoms or treatments things will be different. I just keep hoping that as time goes on there will be more discoveries. In fact, I work in a hospital and our former Chief of Staff is an oncologist. I told him about my CLL last summer and he said that things looked really bright for us. There is a new drug that is having great results. I can't remember which. I think you are doing exactly what you should for your mom. She knows you are there for her if she needs you. Let me know if you have any more questions.