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CLL Support Association
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Second Opinion Dr needed

Any one been to both Dr. Furman and Dr. Keating to give an honest opinion for second opinion route? Any guidance appreciated. TX or NY I know....but worth it for the right fit.

Thanks!!

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Go for it! Or Byrd in Ohio, Kipps in San Diego, Sharman in Oregon, Lamanna in NYC, Brown in Boston. I know there are names I'm not coming up with. The point is yes! It's very valuable to get opinions in different facilities. Personality fit is important, but so is talking to doctors who see things a little differently, and also are aware of and can offer different trials,if that is something you are interested in.

Several years ago I read a post by someone about treatment bias (centers which recommend a treatment or trial because they were part of developing it). I had never thought about that before, but it makes sense that a doctor might be more inclined to recommend a treatment that they had spent years researching and totally believed in as a result.

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I live in LA and my hemo-onc got me in to see Byrd in Ohio and Kipps in San Diego - the two top CLL specialists in the world. Also saw Barnes at Mass General. You can't get too many second opinions. Changed everything in my diagnosis and treatment.

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I got 5 my first year. ! I see kipps and Choi now.

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They're my docs too! I'm in the Gazyva-ibrutinib clinical trial @ Moores/UCSD. 2nd infusion tomorrow!

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Good Luck Tim🙏🏻

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Cool,

Hoffy

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Did you achieve remission and if so, how long did it last? Lastly, what are your markers? You can send me a private msg if you don't want to share with everybody. I will be starting treatment soon and don't know which of them to choose.

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Well

I have access to several local CLL specialist and found a good enough fit locally and if things got really bad my CLL oncologist works with a larger group that functions as a team and while DR Google is bad DR Youtube has all the ASH and other presentations from these Doctors and there does not seem to be any disagreement on treatment

The other issue is getting insurance to cover out of network as some of my office visits have been in the 10,000 dollar range depending on the testing

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Lauriesue4-I've been seeing Dr. Keating for the last 10 years! He's one of the foremost authories! Very good doctor. Kind and loving but semi-retired so keep that in mind.

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I agree. If you can get to M D Anderson and see Doc Keating or his protege Dr. Phil Thompson, you can't go wrong. I've seen them for years.

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Hi Lauriesue4,

Dr. Furman is my primary doctor, and I highly recommend him.

However I fear you will not be able to get an appointment with either Dr. Furman or Dr. Keating.

I believe both are not accepting new patients, but they each are mentoring the next generation of CLL experts. In NY its Dr. John Allan

weillcornell.org/jnallan

and in Texas I believe its Dr. Phillip Thompson

faculty.mdanderson.org/prof...

(along with several other well known CLL experts at MD Anderson).

MsLockYourPosts mentions several excellent alternatives. MD Anderson, Ohio State, Dana Farber- Boston, USCD San Diego and NY Presbyterian have excellent teams of CLL doctors at each location that collaborate together with their "Rock Stars" and provide a wealth of knowledge.

Len

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I think Doc Keating is having Dr. Phil Thompson filling in for him. Both were my docs for many years until I required a transplant last year when it seemed I had run out of options.

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How are things since the transplant? If you don’t mind me asking, that may be the direction my friend is heading. So many options and experiments truly. A lot to decide especially when so many diffeeent ideas/suggestions from brilliant MDs. Blessings to u

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The transplant itself went very well. I engrafted within about 6-8 weeks and all the leukemia was eliminated within about three months. But since then I've been dealing with various aspects of GVHD. I've dealt mostly with total body skin rash issues but fatigue has been a constant. I was told by other transplant survivors that it would take me 18-24 months to feel normal again. I didn't believe it, but it's proving to be accurate. I'm still taking about 30 pills and capsules daily to fight off the GVHD effects and the side effects of the immunosuppressive drugs themselves. But my docs are trying to slowly taper me off them. I can't wait to be done with them.

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I bet! Thanks for sharing your story! Best of luck to you! The power of the mind is so strong and beneficial..... believe it will come and it will! Faith gets me through all life’s struggles. Sending you strength, clarity, and healing energy!

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What state do you live in? Moffitt Center in FL is great. I went to Dr. Pinilla for my second opinion. I have been in touch with Dr. Byrd at the James in Ohio. He is very good too. I have a friend who goes to Sloan Kettering in NY. Thank goodness there are so many CLL experts out there!

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This inquiry is for my friend who lives in NJ, he has great connections to get into both of the mentioned drs and I’m assisting in gathering info to help with his direction. He is not the typical CLL patient and needs a refreshing set of eyes to offer an opinion. I greatly appreciate all of your replies. I’m forwarding them to him, he’s my person :-)

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Dr. Furman or someone who works under him would be great. He is very much on the cutting edge and I agree with his approach.

Be well,

Hoffy

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If he's in NJ and has an unusual case he might want to consider Furman NY Pres Cornell Weill and Dr. Lamanna, NY Pres. Columbia. Someone needs to explain how NYC ended up with two NYPres.s to me some day.

They are both excellent, but sometimes have a slightly different take on things, and they different trials to offer if one of the trials looks like the best way to go.

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In the past , MDA had a reputation for being more aggressive and OSU more conservative. I don't know if that is still the case.

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