Does anyone know why it is never listed (as far as I can tell) in the list of good doctors?
Hubby was given to Dr. Julio Chavez. I feel because he is the new kid on the block. We are new to CLL just 4 months and no need for treatment yet, it would be nice to ease my mind. Thanks if you know any reasons!!
Spacee (Linda)
Moffitt has had a very strong CLL programme for 10 years or more, under the leadership of Javier Pinilla-Ibarz, MD, PhD
patientpower.info/bio/javie...
They do research and run a number of clinical trials...
Dr. Chavez is part of this team and currently is running some Imbruvica (ibrutinib) combination trials.
Moffitt produced a series of papers on various aspects of CLL a few years ago, that were extremely well done. Note that things have move on a bit, but the quality of the work is excellent.
Here is an example...
moffitt.org/File%20Library/...
~chris
Thanks Chris, I am guessing the "team" approach means that if a doc has a tricky case, it will be discussed at a team meet and an approach will be decided on collectively. Kinda like my experience with OB/GYN's.
At first I thought I would be able to understand all the abbreviations until I read BMT. I asked Twin (former medical technologist )if she knew what it meant. She started running lab tests through her brain. Finally I said Bone Marrow Transplant, duh. I told her that I needed to keep a list of abbreviations and she agreed. Sorry, sidetracked a bit there.
But Thanks, Chris,
Linda
Here are some abbreviations,
cllsociety.org/toolbox/abbr...
I also have an extensive list here...
~chris
Hi Spacee & Chris......
This is a good question that I was wondering as well. I am moving to Sun City Center, FL so ultimately I will need a new doctor at Moffitt. I know of Dr. Javier Pinilla-Ibarz but was wondering why he isn't listed on Dr. Sharman's List of doctors. Since I have annual April visits to Dr. Byrd at OSU and annual September visits to NIH, I figure I have time (I hope). So I will be checking out the bi-monthly meeting of the Central Florida CLL Support Group. Since I won't be there till end of October. It will have to be the November meeting.
cllsociety.org/event/centra...
I did not know there was a Central Florida Support Group. Thanks for that info. Hope the lecture is posted here. My husband has not yet acknowledged that he has CLL. Still working full time and playing golf! But the time may come! I do remember speaking of something medical years ago and him putting his hands on his brain and asking me to speak of something in regular words! Ha
CLLsociety.org posts a pretty complete list of support group offerings around the US, and I think, at least one in Canada, as well as conferences. You will find the link at the top of the home page. If there isn't one in your area, you can also indicate an interest in having one started.
Thanks!! That is kind of you to give the info and suggest a start of a support group. Right now, only one other person in town knows Hubby has it, the managing parter where he still works full time. Can't let the clients know cause they will be looking of another CPA. Will say to you, when he was first diagnosed, we took it very well. The more I read here the sadder I get. He is almost 70, going to retire June 1 and I need him to drive to see our son's and their families cause of my own condition, I don't drive more than 45 mins. They live out of state. I don't think uber goes that far!
Linda
From the CLL Society web site. The topic for this meeting is way ahead of where your husband is now and something he may never need, but it might be worth it to contact the organizer to find out more about the group. I don't know how far you are from Moffit, but I suspect this is not the kind of meeting where he would run into clients. You could always say that you are there to learn more for a friend (you have lots of new friends here!) should you run into anyone he knows. The best thing I did for myself when I was new was to cart myself off to a talk (which was way over my head, but I knew that everyone in the room was dealing with the same thing, and an LRF conference. Just meeting and talking to others will CLL in person helped me a lot.
Another option is the LLS.org one to one connect program. They will connect you with a patient or caregiver near you who has dealt with a similar situation who you can talk to.
Central Florida CLL Support Group
September 30 @ 10:30 am - 12:00 pm
Moffitt Cancer Center
12902 USF Magnolia Drive
Tampa, FL 33612
Dr. Fred Locke, the Principal Investigator on the CAR-T clinical trials at Moffitt, to speak on this new therapy.
We will meet this month in the David Murphey Conference room, Stabile Research Center, Moffitt Cancer Center Main Conference. For easiest access to the conference room, please park at the GOLD Valet.
Conference Room is located on the 1st floor of the building across from the Moffitt Clinic Building.
RSVP to Archie Banfield at archiebanfield25@gmail.com
Refreshments will be available.
For more information and to access the flyer, click here.
That is really a wise idea! Kinda reminds me of when I was friends with a woman who had MS. She and her husband liked to eat lunch out and would invite me long. After I was in the car, I would be asked if I minded stopping by an open AA meeting. Nope, I was fine with it. And there sat the owner of our Country Club. We had never met personally but we definitely recognized each other! Haha. But it was only when I was told "We want to hear your testimony at the next meeting" that I felt I needed to not go.
As I ramble on, I do have circadian rhythm problem which means my days and nights are somewhat mixed up and I sleep until noon. So, the one on one sounds interesting. (The way we make it to appts for him, is that we have made the 3rd seat into a loveseat like of bed for me to sleep on til we get there). Also, I would like to say, if it ever came to not seening the sons, one is in Florida. Near Mayo and the other is in Durham near Duke and the 3rd is in B'ham near UAB so we do have options. Thankfully. I will look into LLS.org. Thank YOU!!
Linda
Any ideas about circadian rhythm problems and dealing with them would be appreciated - maybe in a locked post or a PM.
Your sons are well placed, CLL wise. If one doctor just isn't right move on. My first specialist, I found out later, is infamous for his complete lack of bedside manner Two appointments and I knew there was no way I could deal with him. I believe he is a brilliant clinician, and was glad he was on the consulting team, but if I never saw him again it would have been too soon!
Let us know what works for you!
Dr. Sharman's list is of doctors he knew personally when he put it up, with the exception of a couple of major players who he included. It is a good resource, but is dated - some of the doctors listed are in new locations - and there are new, young, up and coming doctors trained by the best and either continuing to work as part of that doctor's team or now at another location. Http://CLLsociety.org has a list of doctors and at the top of it, a link to the ACOR list. These two lists are patient recommended, but are a good place to start.
You summed up the available lists well. And for myself wanting a CLL specialist, I've always found the lists wanting. Coincidentally I'm in Central Florida and for the 6 years since Dx I've periodically visited ACOR's list, Dr. Sharman's list, & more recently the one at CLLSociety.org and realize that Dr. Sharman's is limited to colleagues, while the others are limited to those patients visited and reported on. These 2 lists I've found are often misleading since it includes doctors patients liked whether or not they are CLL specialists.
This leads me to another limitation I find frustrating and that we are trying to verify which doctors are specialists when the field itself doesn't have any verification system. We're told how important it is to get an expert in CLL, but there's no doctor certification - not even an established definition of who qualifies as a CLL specialist.
I think we are all after those doctors who see CLL patients regularly while also focused on cutting edge information and research. We want them to either be conducting CLL clinical trials or heavily involved as leaders in ASH &/or ASCO conferences. I kind of have my own list made up of doctors that have been interviewed by medical journals or by medical 'journalists' from websites such as CLLSociety or Patient Power plus doctors who I've seen making video talks or who've taken part on video panels.
But taking all 3 lists together for Florida I've only found Dr Chanan-Khan @ Mayo in Jacksonville on all of them (although I am sure Dr. Pinilla-Ibarz @ Moffitt also qualifies despite being on only 2 of the 3). Meanwhile there are probably a thousand or so hematologist/oncologists seeing CLL patients in the state (which from Irma we learned is really big because Irma was really big covering a 400 mile diameter). So what I really want, after 6 years of looking, is to KNOW which doctors qualify as specialists and then to be able to KNOW which are closest. Cause from what we now KNOW everyone with CLL who lives in Florida & wants a specialist will be making Dr. Chanan-Khan really really busy.
While talking about unnoticed docs. There is a pretty good one a UAB (University of Alabama). I think I read that he did some research with someone else that discovered something. Ok, I understand that just because you are a good researcher (maybe) does not mean you are a good doc to patients. We have familly in B'ham and I kinda long to go back. Ok, thinking now about husband's sister with Stage 4 cancer, used the UAB but is now at MDA. I suppose it is a real gift to be able to take of the sickest patients.
I am a WW patient at Moffit. Dr javier Pinilla-Ibarz is my supervising doctor since I see the nurse practicioner now. Both the hospital and Dr Pinilla are on the list of better doctors for CLL. I have no complaints.
pkhors,
Do you recall who his nurse practitioner is? I thought she was great, but when I just tried to look up her name I couldn't find it. I saw Dr. Pinilla for a consultation and spent only about 10 minutes with him, while spending the rest of my hour with her.
Afterward I felt I'd probably look elsewhere for a specialist (he didn't seem as open to different Tx options as I'd hoped) but I did have pause which I'd attribute all to liking nurse's manner as well as understanding and knowledge of the disease (was kind of shocked that she knew so much as much as I'm usually shocked how little other nurses know which I'd estimate as a lot less than the average person on this site knows).
- gene
I've seen Dr. Javier Pinilla-Ibarz for a 2nd opinion. I wasn't in sync with him & his guidance so will likely check on Dr. Chanan Khan of the Mayo Clinic, Jacksonville when it comes time for treatment decisions (only reason I still might wind up at Moffitt was his nurse practitioner who was warm, caring, & extremely knowledgeable). But Moffitt stands out as a top cancer hospital in the U.S. This is from their website:
"... recognized by U.S. News & World Report as one of the best hospitals for the treatment of cancer in the country, as well as being the best in the state of Florida.
Ranked No. 9 on U.S. News & World Report’s Best Hospitals for Cancer rankings in 2017, making Moffitt the top-ranked cancer hospital in the Southeast and in the state of Florida.
Dr. Alan List, president and CEO of Moffitt Cancer Center, has been elected to the Society of Hematologic Oncology Board of Directors. He will serve as President-Elect and a member of the board for 2017-18, as President and Chairman of the board for the 2018-19 term...
Moffitt moved up two spots to be the No. 4 ranked health care facility on DiversityInc’s 2017 Top Hospitals & Health Systems list. Moffitt is the only cancer center and the only Florida health institution on the specialty list.
Ranked No. 6 on the 2016 Top 10 Hospitals and Healthcare Systems list.
Magnet® designation in recognition of our nursing excellence. Magnet recognition is granted by the American Nurses Credentialing Center (ANCC), the credentialing body of the American Nurses Association, to honor outstanding health care organizations for nursing professionalism, teamwork, quality patient care and innovations in nursing practices."
- Gene
Thanks so much Gene. I was impressed with Dr. Chavez' s nurse practitioner, if it gets to where I cannot understand him (I do like him so far), we will go with his NP.
Linda
I don't go too much by hospital ratings. The same magazines who rank them have also written about what some hospitals are doing to up their ranking, and it isn't always about better medical practice. Hospitals are in the business of attracting customers. I usually call LLS if I'm trying to help someone find a doctor familiar with a specific diagnosis within the field of hematology. They use those specialists for breakout sessions when they have local conferences, so they are usually pretty on top of who's who.
I think Pinilla-Ibarz certainly qualified as a top CLL specialist. I like to look at their recent publications..usually on tbe biography section of the hospital listing..to see if CLL has been heavily on the list. Also if they are running CLL trials. Moffitt is a top cancer place. I met with him twice...very pleasant. All these top docs are very busy. As treatment options, trials are varied you will get differences among recommendations of even the top docs. Then it is up to us to decide the path to take. Not easy when the best disagree and we dont have their training. I think it comes down to philosophy, our stage of work, age and family situation. Our desire to help make progress..ie trials. Our general health. Our insurance situations. Our risk taking proclivities, etc. Do we want to hit the disease with the strongest yet unproven over long time medicine or go with longer standing treatments? Also do our individual genetics...fish, mutations, lead us in one direction or another. Finally, our gut feeling/confidence about the provider and institution and convenience/expense of travel if needed.
That was what I was kinda thinking but didn't know how to say it!!
Thanks!!
I agree with you and appreciate your ability to lay it out all the considerations so well and so thoroughly. With all the variables I certainly understand those who find a knowledgeable experienced specialist they can put their trust in and then go with what they consider best. I'm more of a give me all the information and options and let me use my left brain analysis and right brain gut feeling to come up with what I think is right.
I am definitely a gut person too, gemit2000
I live in Florida and the Moffitt center is very good highly rated.....I have chosen Florida Cancer Specialists and have total confidence in them. You go where you have the most confidence! I learned that many years ago when I was with my sister whose husband had some very special heart issues. He saw the best cardiologist-surgeon in Grand Rapids that surgeon gave him 5 bypasses all went well for seven years at which time he need more surgery, no one in Grand Rapids would touch him and no one in Detroit either, Detroit sent him to St. Mary’s In Milwaukee where the did surgery on repeaters...that surgeon did 7 bypasses and he was told that was all that could be done and home he went to Marquette in the Upper part of MI in God’s country and all went well for seven years when he was once again in trouble. During a cardiac balloon test the cardiologist got the balloon caught on one of the four stents he had had years ago before the surgeries were done and the team worked for HOURS to free the balloon when it was decided they had to risk going in for the third time to release the balloon or he wouldn’t make it. So they brought in a second team that was fresh and in they went.
This was the secondary team with not as much experience as the main cardiac team but it was all they had and it was now a life and death thing. The head surgeon on this second team had the personality of a blank wall....when talking to us he talked so fast and wouldn’t even make eye contact with us. He did tell us there was little chance he would survive and he simply walked away.... was a very bleak situation. Here was a middle aged man with 4 stents and 12 bypasses with a ballon caught on an old stent. The surgery took hours...
So many hours the original team was called back in for standby when the head doctor came out and told us he had done what he could and he had found enough veins in the back side heart cavity to give him 2 more bypasses which was unreal!! The problem now was the total amount of blood lose...the total a punt of blood that could be given to one person at a single issue was 30 units and if they couldn’t get the bleeding stopped at the end of the 30 units they couldn’t give any more due to risking shock. So they hooked up unit 28,29 and then 30 and then half way thru unit 30 the bleeding was stopped....Oh, happy day we had a major miracle!!! All done by the second team lead by a no name doctor new to the hospital. I learned that day. The title of the doctor or the institution matters not.....you are in God’s hands! My brother in law remains alive and doing great and that dreaded day was 22 years ago.
🙏😍💕
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