Getting 2nd opinion for CLL

[BamaLady]

Just wondering if anyone has seen a CLL specialists at Mayo in Jacksonville, FL. I have

been seeing a hematology oncologist for last year and he has me on W&W and I think I need to just see what a specialist has to say or maybe even get in a trial.

[Cllcanada Top Poster CURE Hero]

Good idea, you are a complex patient. 😀

Here is a renowned CLL specialist

mayoclinic.org/biographies/...

~chris 🇨🇦

[SouthFloridaLady]

I live in southeast Florida and drove five hours, twice, to Jacksonville to see Dr. Asher (Asher) A. Chanan-Khan. He is amazing. However, I settled on Dr. Jennifer Brown at the Dana Farber in Boston along with my local hematologist.

[GMa27]

I heard it is good there.

I went to Moffitt in Tampa for my second opinion. It was closer to me. Also very good. You see Dr. Pinilla first visit then 4 weeks later you see one of his team members for final opinion.

[ladyprescott]

Hi Bama...absolutely. You need a specialist for this disease. I see an oncologist here in my city for blood draws, but I have a specialist in another state that I see every six months. They are working in conjunction with one another. I've been through watch & wait and I'm now on Imbruvica for the last year. Doing well on it. Have had some of the side effects, but that goes along with being on a med that's saving my life. A specialist will do more in depth testing than an oncologist. Find one even if you have to travel. Hope someone here can answer your question. I'm in Arizona and we have Mayo here, but they don't take Medi-Care. My best to you. Hoping you never have to have treatment. Carole

[New1948]

I'm seeing Dr. Chanan-Khan beginning last May. Started on Gazyva and after a serious reaction to test dose, subsequent doses resulted in my CBC trend to normal. Enrolled in MERIT trial with mono ibrutinib. MRD test at end of cycle 3 was positive, the main purpose of the trial. At my next visit (end of cycle 4 one week ago) my ANC plummeted to 0.05 from 3.28 a month ago. Also had UTI and upper respiratory infection treated with antibiotics.

A new CBC 4 days later showed some improvement with ANC at 0.29. UTI has resolved, but URI still present. Dr. gave the ok to return home (Wilmington, NC), but decided to stay in Florida for next CBC, which is scheduled for tomorrow. Not sure what caused the ANC to drop so low, but am off the ibrutinib until ANC is above 1.0.

Wilmington is about 475 miles from the Florida Mayo Clinic, a trip my wife and have driven or I have flown separately some 15 times since the end of last May. Not certain what the future looks like in terms of treatment and disease progression, but hope clarity will emerge from tomorrow's visit.

[SouthFloridaLady in reply to New1948]

Dr. Chanan-Khan Is an excellent doctor. I saw him twice before I settled on a doctor at the Dana Farber.