Tampa area BCO sisters II
Comments
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Any one recommend an Onc in the Clearwater area? Will also ask Dr Cogburn with FCS from Tampa FCS who of course will also make her own suggestion. Always good to get recommendations from Patients too!
Thanks!
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When I was doing chemo first time, I had Patel by Morton Plant. Still would, Humana kicked FCS out of network. So that was that. I did like him.
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Thanks, Spookiesmom!
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Hi Lady of the Lake,
I live in the Villages so not too far from Lutz. I'm 3 years out from my bilateral mastectomy and I can tell you that as time goes on, you will have more and more days when you don't think about it. I'm not sure if the fear ever goes away. I, too, worry about every little thing but most days, I can downgrade that big C word in my brain to a small c. You'll get there.
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aviva - where is your recurrence? If it is in the breast/axilla/chest area it would seem like a loco-regional recurrence.
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Yes, left side top of breast. They think after I went off Arimidex hidden/not taken cells migrated from right to left in lymph system, and grew sometime in last 18 months Ive been off Arimidex. Got my first Faslodex shots today, Ibrance comes tomorrow. Will be taking those 2 and see how it works.
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aviva - I am hopeful that combo does it work for you. I have another friend on Faslodex and it has been excellent for her. I hope both areeasy on you as well. Hang in there, I will be thinking of you.
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Thanks. Ibrance came today and Ill start tonite. What is weird to me is that they say I might be on both things forever. Forever? Thats a long time. And the Ibrance, chemo, how can you take that forever.
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I’ve been on ibrance over a year, some on the stage 4 threads almost 3-4 years. I will be on this till I show progression or die. If I progress, and that can/does happen, there are other drugs to use. So “forever” is not unrealistic
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Hi, recently diagnosed. Aug 21. Left breast, invasive ductal carcinoma. 5 cm E +
her -. FNA one node positive, likely more. Scans for Mets all clear so far. PET tomorrow
Meet with Med. Onc Wed. Already met with Surgeon. Moffitt
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linda - welcome, but sorry you are joining this club! This is a great group of Tampa area people - can any of us who are local provide you with any info, or do you have any questions?
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Galsal,
I see the absolute BEST oncologist at St. Joseph’s in Lutz. Her name is Dr. Jennifer Giglia (pronounced Jill-ea). She is my 3rd MO since I moved to the Tampa area last April. I cannot say enough good things about her. Her greatest skill is listening, and that’s rare. Best of luck.
Lauri
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Hello!
I'm new. I grew up in Clearwater, work in Tampa and live in Pasco. Glad to find this group!
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panout - welcome, but sorry you are in this club! This thread has not been too active because of the limitations of the last year, but if we can help you in any way please let us know. You are just out of surgery, how are you feeling?
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Special K - thanks for your reply. Even if we all never get together in person, we share the same pool of docs, surgeons, radiologist, and other resources. I'm looking forward to hearing everyone's experiences. So far things are going good...just waiting on those oncotype results!
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I have a set of hand and foot icing anti-neuropothy hings with the ice packs to donate or give to someone. I have one more treatment but think I will skip icing or hold on to some other icy things that time. I'm in Citrus county if anyone is interested or knows where I can donate locally.
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aviva - that is so nice of you! Did you also list on the BCO free-cycle thread? Even if they aren't local they might be willing to pay shipping.
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No, anyway you could put a link? I looked but didnt see that.
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Of course! Here is the topic, you just start a new topic with your specific item. You can bump it periodically to keep it in the active topics until someone comes along who can use it!
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Thanks! I ended up giving them to a woman having her first chemo, on my final day. Told her to pay it forward. Now 3 weeks later Im starting my 16 cycles of radiation. It went well today, just an annoying hour and a quarter ride each way. With a little 4 day hospital stay before the last chemo, for a blood clot, had to have port removed in hospital. All well now!
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aviva - that is great - so happy someone is receiving the benefit of your generosity! Sorry to hear about the blood clot, doesn't sound like fun - but also glad rads is going ok - and it is a shorter course so less driving than a long course - eeeks!
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hello,
I’m looking for a fantastic micro surgeon in the Tampa area for my breast reconstruction. I’ve had an implant fail on my radiated side and have been told I will have to do something other than diep as not enough fat there. Any suggestions would be wonderful
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flnana - have you been seen at Orlando Health? I know there are some micro surgeons here in Tampa, but my surgeon generally refers autologous patients to Orlando. Another option is NOLA at the Center for Restorative Breast Surgery - they have pioneered many of the non-DIEP autologous procedures
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Hi,
yes, I've seen the Dr.'s at Orlando Health but I was wanting a second opinion. I was looking for a micro surgeon that would do the love handle area and they don't do that at Orlando Health.
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flnana - sorry - I’ve been out of town and not on BCO, just got back tonight. This is a link for a micro vascular PS at Moffitt here in Tampa. I saw him for lymphedema, the current protocol at Moffitt is that everyone treated for LE there sees this doc to determine if they are a candidate for micro vascular surgery to repair the vascular channels. I had the workup, saw Dr P several times, and I am a candidate for the surgery. I decided to wait as my LE is well controlled and not fibrotic. I’ve had a lot of surgery and just wasn’t ready to try this without a pressing need. I can’t endorse Dr P beyond my own experience which is limited to L, but I know he does many types of micro vascular surgery, and Moffitt is an NCI center. Might be worth a phone call.
https://moffitt.org/providers/nicholas-panetta/
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Thanks SpecialK...I called Moffitt and Dr. Panetta isn't taking any new patients and they didn't know when they would...just taking patients that come in through the Moffitt Breast surgery center. I've decided, after finding this out, that I'm looking into going to New Orleans to the center there since my newly received Medicare and my supplement will cover the procedure and I will have to have some sort of stacked flap in order create the breast so really want a very experienced microsurgeon.
Thanks!
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flnana - if in your shoes - that is where I would go as well, the surgeons at NOLA are the OGs of flap surgery. Sounds like you and I may be the same age - my Medicare just began on 10/1. I have heard that the folks there are very used to dealing with patients who travel to see them and they have the process down pat. Good luck - I very much hope that all of this turns out the way you want - I totally get how the recon road can be a complex one!
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SpecialK...We're twins!! My Bday is 10/01 and that's when I started medicare too!
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Yay for Florida girls who just started Medicare, lol! Happy Birthday to you - please let us know how things go with NOLA, I am curious to hear. If you don't want to post it here - you can always PM me. Things recon-wise are stable for me right now, but based on my history - that could change pretty much any time, so I like to have the info in my pocket!
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Hey Tampa Bay peeps - be careful and stay safe wherever you are, sheltering in place or evacuated. Thinking of you all!
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