Hello Community. I am pleased to find you. I am new to this support site and very new to CLL. I've been diagnosed in the last two weeks. I am waiting to hear the results of the lab test they do to determine how aggressive the CLL might be. Depression sneaks up on me frequently. I am 60 years old, female with husband, three daughters and 5 grandkids. I sure wasn't expecting to be looking at the last part of my life this way.
My family physician sent me to "the first available" oncologist. I want to also consult either with Mayo, Cleveland Clinic or The James Cancer Center in Columbus. I live near Columbus. Has anyone had any experience with The James Cancer Center? Also, when managing a disease like this is it protocol to have a local oncologist and one you follow up with at a special cancer center? Is it expected that they will work together? I'm interested in anyone's experience with this.
I am apparently Stage 0 or maybe between 0-1 because I do have some enlarged lymph nodes she is watching.
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sophia60
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Dr. Byrd at James is one of the top CLL specialist in the world... he has a cohort of highly engaged colleagues in CLL research and clinical trials...
Your local oncologist, but preferably a hemetologist, can track you and work with the CLL specialist you choose. You could have 15-20 before treatments and in that time everything will change... hopefully CLL will be cured.
Thank you so much Cllcanada! I do see an hemetologist not oncologist. I assumed they were the same. Thanks for the reference to Dr. Byrd. It is nice to know he is within a 100 miles!
James is a center of excellence in CLL and strongly involved in research and clinical trials... people come from around the world to have a consultation there...
Oncologist tend to be solid tumour doctors, hemetologist specialize in blood cancers, strokes etc... onc/hemes, in my view are wearing too many hats and often fail to be able to keep up with the very rapid developments in CLL... which is rare and a tiny part of their practices.
Sophia, there is no absolute answer to your question. Ideally I like the idea of having a local oncologist in addition to the Cll specialist you would see. Its great if they get on the same page and consult. I had it set up like that for a while. I saw my local guy every three months and my specialist once a year. They had no ego issues and were both fine with consulting. My local guy left town and now I am just managed by my specialist. I see a local internist for colds, flus and infections who knows my cll history. I have not felt the need to reestablish a local hematologist.
Cll specialists can be an oncologist or a hematologist. A general oncologist treats all cancers. A general hematologist treats all blood disorders. Some general hematologists specialize in blood cancers. Some specialize in only cll blood cancers. Some oncologists treat only blood cancers.
I think as a general rule the best cll specialists confine their practice to cll, but some very good ones see other blood cancers as well. Cll treatment strategies are evolving so fast, indeed treatments for all cancers are evolving rapidly. These days you almost have to be a specialist to have cutting edge knowledge. It would be unreasonable to expect someone to know all things about all cancers.
I like your plan to have a local doc and a specialist. Just be flexible as you look into it, its not a one size fits all deal.
I, too, was diagnosed this year at 60. My local hematological-oncologist in Los Angeles thought I was Stage 0, mutated (good), and could go on watch & wait. But then he referred me to Dr. Byrd at the James in Columbus and I was found to be Stage II, unmutated (bad), and was encouraged to start immediate treatment. I then got into a clinical trial at UCSD where I'm doing great. I encourage everyone who's newly diagnosed to get a second opinion from a CLL specialist as soon as possible. And yes, your hem-onc should provide referrals and ongoing coordination with a specialist. If they don't, you need to find a new hem-onc who will.
My local hem-onc was about to start me on BR chemo but Dr. Byrd recommended treatment with chemo-alternative ibrutinib & Gazyva and he coordinated with my hem-onc to refer me to the clinical trial at UCSD. The bottom line is seeing a top CLL specialist changed everything from my diagnosis to my treatment and I am grateful to my hem-onc for recognizing the need for a specialist and his enthusiasm for building a team for me.
I just made my initial appointment with Dr. Byrd. I can’t get in until July. I am hoping nothing happens between now and then that my local hematologist feels the need to start me on a treatment. I really don’t want to start any treatment until I see him. Fortunately at least her diagnosis calls for Wait and watch at this time. Thank you for your reply and my best wishes for you on your journey
I see Dr. Byrd. He and his staff are wonderful! I have a local Hematologist that I see every 6 months and I see Dr. Byrd once per year. I cannot say enough nice things about Dr. Byrd and the James Facility; I was impressed when we walked through the front doors and it only got better from there. Good luck to you
Interesting. I just saw Dr. Byrd this morning. I agree with above comments that he and his team are exceptional. I drive 7 hours one-way to participate in the acalabrutinib plus obinutuzumab clinical trial and am doing great after 44 months in the trial. I have been extremely pleased with my treatment.
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