Chronic Lymphocytic Leukemia (CLL) Support Group

Dear emma: I hope that you are doing well....I FULLY agree with your daughter that you should find the BEST hematologist/Oncologist who has expertise in CLL...If you live near a major teaching hospital...that would be good....M.D. Anderson Hopspital is in Houston ,Texas---perhaps, you could research them....I am not sure what is available in your state....should you want to go to Philadelphia---there is the University of Pennsylvania Hospital.....I see Stephen Schuster,M.D. there since he is supposed to be the best in the field....I don't mind traveling there from NJ.....you could look him up online....I am sure that there are good teaching hospitals near you......take care of yourself...... Best Always:) Mia

Emma - To learn more about Cll i found a good site - go to clltopics.org.

Hi, Emma, a bit late, but thats how things have always been with me. Yes, you do need a hematologist/ onc you can communicate with. Also, an opinion with a CLL experts is almost a must. But don't worry too much. CLL is usually slow going and you probably have lots of time to find someone commpatible with your needs. I know a few web sites and one that I would really point you to is CLL Christian Friends.com and CLL Forum.com. There is a lot of information on the net and some of it is not correct or outdated. CLL Topics is a must. It will educiate you on this dragon. Also, the Leukemia and Lymphoma Sociaty is an excellent site. The more you know, the more you have control over your life.

Hi,Just wanted to drop you a line.My name is Bob and I have had cll for about a year and half.I just want to say that I think that you must feel comfortable with you Dr.My first dr. I had for about 9 months. He was very cold.I had to almost pull teeth to get some answers from him.I talked with my primary Dr. and got some names. I switched to a woman and see is SUPER.I see her every 2 months for blood work.She answers all my questions and is not cold. I am not looking for syamathy but a honest answer. I HOPE THAT YOU CAN FIND A DR. THAT YOU CAN TALK TO. Thanks Bob
Hope you all felling a little better as time goes forward.

Hi Emma, I have CLL for over 10 years, and I traval 300 miles round trip to see my doctor.
I think you should find a Dr that you are comfortable with. My doctor sits with me for about a half hour going thru everything. I may have to go for treatment in Feb, but 10 years isn't bad. I live in NC and it was hard to find someone that I trusted. I will have to find a doctor closer for treatment and that takes a lot of work. So just keep looking, The Cancer Centers of America are very good. I go to the Cancer Center of NC. I hope this helps you a little bit. Oh yes, I am 70 years young.
I wish you the best and hope you find a good doctor.
Sue

Listen to your daughter. Two similar things to share. One i am a daughter whose father is going through this and trust me when i say she is doing probablly alot of leg work on this subject and so she knows what she is talking about. Altough she may be very sad and seem like she might be overly intrested she is only worried and really trying to do her best for you. Second of all yeah your doctor stinks if that is what he did. Last year i had a doctor tell me uhh i think you have cerical cancer and we should give you a full hysterectomy soon but i cant talk about it right now cause i am getting a migraine can you come back tommorow. Turns out it was a benign ovarian cyst that another doc removed. And finally second opinions are always a good thing

Welcome Emma,

So sorry you had to join us CLLers.I would most certainly get a second opinion and if possible with a Dr. that is a CLL expert.I traveled from East Tenn. to MD Anderson in Houston,Texas.I see Dr. Keating there.We have a list of CLL Doctors and their locations on our website at www.cllcfriends.com. Also be sure you have a local Dr. you trust and communicates well with you.
Also Dr. Hamblin,CLL expert from the UK answers our CLL questions.
Let us know what you find out.We care!
God Bless,
Deb