Hi - My situation is a little different than yours but I'll tell you about it. My CLL was found during routine blood workup for knee surgery -- wbcs elevated then found to have CLL. Stage 0 --This was in October 2014 and I had my knee surgery in December 2014. So glad I had the surgery -- it isn't easy but now I can walk and be more active which is important for quality of life. Your disease is further along than mine so I couldn't say, but I'd speak to your hematologist and surgeon about this. For me, it's a quality of life issue.
- Winnsboro, TX
- Member Since Jul 2012
Their Diagnoses (2)
- Patient: Slow Growing, Chronic Lymphocytic Leukemia
- Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 5 years ago, Female, Age: 59
- View this journey (8 Experiences)
- Patient: Chronic Lymphocytic Leukemia (CLL)
- Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: almost 6 years ago, Female, Age: 59
- View this journey (0 Experiences)
GailB started following12 months ago
GailB started followingabout 1 year ago
GailB wrote on jabroome42's wall
I just saw your question about MD Anderson I went there for a second opion since I only got a 3 month remission from my 1st round of chemo. After you see the nurse, then the intern you finally see the Dr. 2 to 3 hrs at your appointment time and he has his little 2 min. speech he gives you and then he's done and doesn't want any questions and tells you not to worry he will make you well. Since I come from a family of cancer patients we have learn to research the cancer and learn everthing about it you can, so that you can make informed decision for yourself. They were talking Stem Cell transplant and I had done my research and knew that that would be my very last option and knew that they had failed 2x to determine if I had 17p deletion. I then went to John Hopkins for a 3rd opion and was just amazed. The doctor was 3 minutes late and he told me he was sorry he got held up. He spent 1hr talking to my family and I and even allowed me to skype my mom and he went out of his way to make sure she could see and hear. He answer all of our questions and told us that even if I did not have the 17p del I did have the other markers for a more aggressive form of the disease and his recommendation for treatment was the same as my local Dr. They were able to do the test using a new process that they have and determined that I did not have the 17p del. I love John Hopkins and will never go back to MD Anderson. As a patient you need to go where you have confidence in the Dr's. My local Dr. is the one that does all my treatments and takes care of me. I go to John Hopkins for second opinions. Since I did not get a long remission after round 2 I am going to go back to John Hopkins to see what they recommend for round 3 (my Dr. is looking at 3 biologics in trials 2 should be getting FDA approval soon)and to ask at what point they would recommend a Stem Cell Transplant and at what point I would not be eligible for a Stem Cell Transplant if I continue doing other treatments, John Hopkins has a better success rate with the Stem Cell Trans. than MD Anderson. If you go to a big cancer facility they will do the genetics of your cancer to taylor your treatment. Research into the genetics of CLL/SLL is in its infancy compared to other cancers. I later found out that the purpose of scanning my patient card everywhere I went was to ensure that their patients do not have to wait. I also have a friend that her brother was turned away by MD Anderson no insurance and no money, same reason 2 other hospitals turned him away. I have never had a good feeling about Cancer Treatment Centers of America to much hype to commercialized for me. These are hard decisions. I hope this helps. Remember there are no wrong choices or decisions when it comes to dealing with cancer, you make the best choice/decision with the information you have at the time. You can drive yourself crazy with the what ifs.
GailB started followingabout 2 years ago