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  #1  
Old Tue Jan 29, 2013, 01:47 AM
anangel8 anangel8 is offline
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Which docs at Moffitt Center in Tampa, FL?

My mother just got diagnosed and we are scheduling an appt at the Moffitt Cancer Center for BMT. Anybody out there have luck with a particular doc?? I heard Dr. List, but not sure how accessible he is. Anyone know or see somebody they like and trust??
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  #2  
Old Tue Jan 29, 2013, 03:25 PM
Al's Wife Al's Wife is offline
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My husband was at Moffitt and we saw Dr. Rami Komrokji, but I think all their doctors are good and they confer with one another. Dr. Komrokji is very caring and was very accessible. One weekend I emailed him, expecting not to hear anything back until Monday, and he responded right back. I was shocked. My husband was there for a clinical trial of Promacta, which unfortunately didn't work for him. He is not eligible for a BMT. I'm assuming the transplant team is different but Dr. Komrokji might could recommend one of them.
We are back here at home in Georgia at our local oncologist taking Dacogen (we start 6th cycle next Monday). He hasn't shown much improvement on the Dacogen, he's stable, for the most part, I'd say, but does need transfusions during treatment. Of course they only gave him a 2% chance that the Dacogen would work. But we figured 2% was better than 0%; right?
One of our other doctors told us in August he had "weeks not months," so we are grateful for each and every day. Since August we have traveled and spent some great quality time together and he has been able to go to antique car shows, which is his passion.
We are still hoping and praying for our miracle.
Good luck with whoever your Mother sees and God bless you both. It's a rollercoaster ride but better than the alternative.
This forum is a wonderful place to get knowledge, love and support.
If you happen to see Dr. Komrokji, please tell him Al and Linda send their regards.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #3  
Old Tue Jan 29, 2013, 05:09 PM
mike b. mike b. is offline
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Dr's at Moffitt

I have been going to Moffitt for the past 7 years and have Dr Jefferey Lancet who is very good . Also his Nurse Practitioner is exceptional and her name is Sara Tinsley. I have low risk MDS and they have treated me well and I highly recommend them .
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  #4  
Old Wed Jan 30, 2013, 11:32 PM
akrutchick akrutchick is offline
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would like to move to florida. Very pleased to hear that Moffitt is such a top notch cancer center .My son was treated at NY Presbyterian-Weill Cornell.
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  #5  
Old Wed Feb 27, 2013, 01:39 AM
kris kris is offline
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Moffitt

The oncology/hematology department and BMT are two different departments but work very closely with each other.
Dr List, Lancet and Komrajki work with malignant hematalgic disorders. They readily refer to BMT . Dr Anesetti, Dr Hernandez, Fr Field and the list goes on all work closely together with the BMT/SCT population. The clinic is wonderful beyond words.
We have been working with Moffitt since May 2011 with both departments. Feel free to contact me if you want more specifics. Our experience has been very positive.
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Kris, wife of Rick. DX; MDS/ Ringed Siderblast 5/2006. Supportive care, then Vidaza x 25 mo. HSCT 11//1/11 doing GREAT!
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  #6  
Old Mon Feb 10, 2014, 04:42 PM
Sunnsurf@bellsouth.net Sunnsurf@bellsouth.net is offline
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Location: Vero beach, fl. 32964 USA
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Quote:
Originally Posted by Al's Wife View Post
My husband was at Moffitt and we saw Dr. Rami Komrokji, but I think all their doctors are good and they confer with one another. Dr. Komrokji is very caring and was very accessible. One weekend I emailed him, expecting not to hear anything back until Monday, and he responded right back. I was shocked. My husband was there for a clinical trial of Promacta, which unfortunately didn't work for him. He is not eligible for a BMT. I'm assuming the transplant team is different but Dr. Komrokji might could recommend one of them.
We are back here at home in Georgia at our local oncologist taking Dacogen (we start 6th cycle next Monday). He hasn't shown much improvement on the Dacogen, he's stable, for the most part, I'd say, but does need transfusions during treatment. Of course they only gave him a 2% chance that the Dacogen would work. But we figured 2% was better than 0%; right?
One of our other doctors told us in August he had "weeks not months," so we are grateful for each and every day. Since August we have traveled and spent some great quality time together and he has been able to go to antique car shows, which is his passion.
We are still hoping and praying for our miracle.
Good luck with whoever your Mother sees and God bless you both. It's a rollercoaster ride but better than the alternative.
This forum is a wonderful place to get knowledge, love and support.
If you happen to see Dr. Komrokji, please tell him Al and Linda send their regards.
I have cmml since October 2012. Have had 2 rounds Vidaza and platelets too low this month to start third round. I have an appt with Dr Komrokji next week. I have heard a lot if good things about him. I too am not eligible for transplant so praying for a miracle. Fortunately, I am still able to walk two miles a day but find I am getting fatigued. I have needed two platelet transfusions. Does your husband need blood transfusions? I was transfusion dependent until I started taking a food supplement (micro algae) and since three weeks after taking it I haven't needed a blood transfusion for 16 months for which I am grateful. Praying for u and your husband and Pls do the same for me. Diane in Florida
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  #7  
Old Mon Feb 10, 2014, 07:56 PM
DebS DebS is offline
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Join Date: Mar 2013
Location: IL, WI
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My husband had his initial treatment in Florida in Venice. His oncologist was in consult with Dr. List constantly.

We then went to Moffitt for an initial consult. We met with Dr. Field.

As everyone has stated, they all work very closely together. It is a wonderful facility.

My husband ended up getting his transplant in Chicago at Loyola. We have found that facility wonderful as well.

No matter what doctor that you end up with, know that Dr. List will be in on the discussions.

Best of luck to you!

Deb
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  #8  
Old Mon Feb 10, 2014, 10:32 PM
Kathy S Kathy S is offline
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Join Date: Nov 2013
Location: Leesburg, Fl
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My husband is being followed by Dr.Komrojki at Moffit. He takes his time to explain things and is right up front with everything. We have met with the transplant team there and again take all the time you need to ask questions. Good luck and I would agree with Linda all of the doctors there would be excellent.
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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