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Any Stage IV's in Florida?

Wenchie
Posts: 88
Joined: Apr 2009

Maybe we can compare facilities and drugs

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

I am in Florida. Tampa area and I go to Moffitt. I had mets to the liver, but not lungs. Currently NED. Last Xeloda treatment in November. I don't know if i can help you but feel free to pm me with any questions and i will certainly try.
Judy

AZlisabeth
Posts: 6
Joined: Jul 2012

We are in Florida too -- Bradenton/Sarasota area.... Judy, who is your oncologist at Moffitt? My dad went there but it was years ago. My mom likes the oncologist here in Sarasota and I think they are connected to Moffitt for trials, etc..... I hope you are doing alright now ?

Lisabeth

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Hi Lisabeth, Yes i am fine thank you. 12 months ned.
Dr. Almahanna and Dr. Yeatman is my surgeon.
I am in Sun City Center, about an hr from you.
small world.
let me know if you would like to get together. I will be away most of august. so if you and your mom are up for it. let me know.
Judy

AZlisabeth
Posts: 6
Joined: Jul 2012

I will let my mom know! She is so discouraged right now and I feel so helpless. It would be good for her to talk to others!

Lisa

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Lisa, if you think talking to your mom would help, i would be happy to. PM me with your phone # and a time that is good for her.
Hugs,
judy

golf_gal's picture
golf_gal
Posts: 69
Joined: Dec 2011

My surgeon is Dr. Sophie Dessureault and my Oncologist is Dr. Richard Kim. I love Moffitt....and drove 7 hours every other week for chemo for three months, then 6 week hiatus and then surgery to remove met.....wait six weeks, resumed chemo. Got back on tues this week for checkup. Original surgery was in 08....rectal cancer. They have me staged as iva. CT Sept 24. As I previously posted my CEA was .8. I just love Moffitt.
---------

I was treated first with rectal excision. Aug. 2008

When met went to lymph node April 2011
Chemo pre surgery was folfox6+avastin.
After surgery folfox w/o avastin.
Last chemo March 14, 2012
----------

In my opinion its certainly worth the drive.

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

I agree it is an awesome place. Glad I dont have a 7 hr ride.! about an hour for us.
Good luck on your scan. Mine is over for 3 months! whew!
Judy

AZlisabeth
Posts: 6
Joined: Jul 2012

This is good to know. My dad was treated at Moffitt but it was 10 years ago.

I am trying to get my mom to get a second opinion, although we really like her oncologist here in Sarasota. But it is good to have names for the future.

I am happy to hear that both of you are doing well!!

Lisa

sailor_on_a_lee...
Posts: 52
Joined: Jun 2012

Hi everyone,

My name is Rick and I'm in Fort Myers.

Officially diagnosed Stage IV colon cancer on June 13, 2012 following a hemicolectomy that cost me 37cm of my colon. Pathology report of resected tissue showed 2 of 13 nodes removed with cancer, perineural invasion, and microscopic evidence of mets to the removed omental tissue. On my PET of June 19 there was too much heeling in the area of my surgery for the pathologist to say anything definitive about my abdomen, no mets to liver, lungs, bones, or other organs, two axillary nodes with "possible" mets and one inguinal node with "probable" met. Preop CEA was 2.4 according to surgeon and post op on 6/18 was 3.4 with LDH going from 149 on June 18 to 129 on July 5.

Dr. Warren Hart of Florida Cancer Specialists is treating me here in Fort Myers. Finished second round of chemo yesterday. Dr. Hart has me on Folfox 6, Oxaliplatin, and Avastin on a two-week cycle where I'm infused for three hours on Wednesday, have a trickle dose for 46 hours and 11 days off.

Sought a second opinion from Dr. Alhamna at Moffit and he concurred with everything so I didn't see any need to add the two-hour drive to Tampa every two weeks. Dr. Alhamna concurred with that position especially after discussing my case with both my surgeon Dr. Neale and Dr. Hart.

Maybe we can all "friend" one another and stay in touch regarding resources, treatment, and support here in Florida and on the West Coast in particular since everyone seems to be from the Fort Myers to Tampa region. Anyone who wants to just go ahead and "friend away" and I'll accept.

golf_gal's picture
golf_gal
Posts: 69
Joined: Dec 2011

Yes, of course, we should talk, share and I've already friendly everyone on this thread. So you are getting 5FU ya? I call it FU5! Lots of us at the infusion center renamed it! You have to find humor when you can! Stay strong. KNOW YOU R NOT ALONE....EVER.....LET THAT REALLY SINK IN. All my prayers and love your way. Jamie. I have no prob with putting my phone out here .... People need each other. 850.362.8035

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

I see a get-to-gether in the future. How about you guys? Not til sept or after though. you are all in treatment so we could work it around that. Just a suggestion. : )
Hugs Judy

sailor_on_a_lee...
Posts: 52
Joined: Jun 2012

Not a bad idea. Maybe we can make it work. I've already "friended" everyone on this thread. If we use the CSN Email it shouldn't be hard to coordinate.

Rick

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

I had the same regime, I also called it FU5.Called it a lot of other things after a while.
; )

glinka65
Posts: 132
Joined: Feb 2009

hey rick!!! i too used to live in ft myeres in tampa now, i to am stave 4 ive had 2 colon resections, and am currently being treated at fl cancer as well, its been rough, we are thinking of taking a look at moffit!! hope your feeling ok lets keep in touch!!! Tommmy

sailor_on_a_lee...
Posts: 52
Joined: Jun 2012

Well now isn't that something. I was born and raised in Tampa and settled in Fort Myers after a 30-year career in the Coast Guard. Seems like we switched places :-).

Actually, I'm feeling good but I'm only 45 days post diagnosis. I walk over two miles six days a week and just added some light weight lifting to my exercise regimen. I've bascially cut red meat from my diet, saving it for an occasional treat, make sure to eat an apple a day (seems some researchers at the Mayo clinic have found something "special" in apples that directly inhibit colon cancer), and of course lots of fiber because of the colon resection.

In addition, I didn't have any mets to my lungs or liver, appaarently the prime spots for metastasis. My pathology did, however, show some metastasis into the omentum that was removed. Moreover, my initial PET scan didn't tell them much about what's going on in my abdomen because of the heeling going on, but it did show one lymph node in my lower abdomen they labeled as "likely metastatic" and two axilary nodes that they said were "indeterminate."

I hear good and bad about Moffitt, but it is one of the National Cancer Centers. What do you think about FCS? Are you looking at Moffitt because of dissatisfaction with FCS or just because it's closer to you now?

Be happy to keep in touch and will look forward to it. Now, tell me how to use the email system that's part of this website and we can mail back and forth without having to wait for these message boards :-).

Get back to me Tommy I'm looking forward to it.

Rick

sailor_on_a_lee...
Posts: 52
Joined: Jun 2012

Check your CSN Email. I figured out how to use it lol :-)

Rick

glinka65
Posts: 132
Joined: Feb 2009

hey rick!!! i too used to live in ft myeres in tampa now, i to am stave 4 ive had 2 colon resections, and am currently being treated at fl cancer as well, its been rough, we are thinking of taking a look at moffit!! hope your feeling ok lets keep in touch!!! Tommmy

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

I read the subject line for this blog string:

Any Stage IV's in Florida?

Wouldn't it be awesome if the answer was NO!

Wouldn't it be great if there was just one state or union in the world that has NO Stage IV'ers!??

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Yes it would. Not looking real good at this point : (

robmx's picture
robmx
Posts: 3
Joined: Sep 2009

Another Stage IV living on Hollywood Beach transplanted from NYC. Colon Cancer diagnosed 11/2006, Stage IV diagnosed 4/2009. Hylar region and right lung.

Feel fine, swim and bike. Had 25 weeks of Folfiri and Avastin last year, stopped end of Sept. That is only standard treatment I have had. Have been self medicating otherwise, successfully I might add. Probably can't post what I have done here without being deleted.

glinka65
Posts: 132
Joined: Feb 2009

im all ears on the self meds dude!!!!

sailor_on_a_lee...
Posts: 52
Joined: Jun 2012

I think you can post anything you're doing to help youself as long as the substances are legal (and that I would keep private only to ensure a degree of security). I don't believe it would bode well if the ACS started censoring the membership. Oh that might offer their opinion about something you are or aren't doing, and that's anyone's right, but to censor you, I don't think that would enhance their cause.

So I say post away.

Rick

Wenchie
Posts: 88
Joined: Apr 2009

OK, now does anyone have mets to the lungs? How about the lymph nodes? I've been playing this game for 6 years now and it seems as though no one wants to touch me with either surgery, RFA or Cyberknife and now my breathing is a little more difficult due to lymph node involvement pressing on windpipe. Anyone have this type of issue?

Jluko
Posts: 3
Joined: Jul 2020

My Dad was just diagnosed with stage 4 colorectal cancer a week ago and had part of his colon removed. He's moving onto the chemo stage but the oncologist he was referred to by the medical group that did the surgery doesn't seem to be proposing more than a basic regimen.

I know there are many advanced treatment options and I'd love it if anyone here could refer me to an oncologist in the Sarasota/Bradenton FL area that can give him the best care available. Deepest thanks!

 

Jim

Trubrit's picture
Trubrit
Posts: 5177
Joined: Jan 2013

I am sorry about your dad, and hope that you get the answers you are looking for.

Because this is a very old thread, may I suggest you start your very own thread here https://csn.cancer.org/forum/128 on the forum home page.  I am sure we have members here, who live in the Florida area. 

Tru

Jluko
Posts: 3
Joined: Jul 2020

will do that, thanks!

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