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what state are you in? also, major cancer center?

winnipeg
Posts: 24
Joined: Apr 2010

Hi all, I am new here but an old hand on the Rare Cancer Alliance anal cancer forum.

I am interested to know what states my fellow patients live in. It seems to me like there are very serious few cases out west, where I live (SoCal).

If you are willing to chime in with your general location, I'd love to know. I am NOT a stalker :) MP327 can vouch for me..I think.

I was initially treated by an onc in private practice, who knew my parents. He chose a brilliant, effective alternative chemo after doing some EXTRA research looking for something new for liver mets from SCC, and it was the right one for my liver mets: Carbo, Taxol, and Xeloda. But his office was understaffed and it was at times very hard to even schedule a chemo!

I transferred to City of Hope in Duarte, a major, well funded center. The care was so well coordinated that it was astonishing! But they were shocked and mystified at my San Diego guy's choice. They had to acknowledge though that he fixed my liver and it's stayed fixed for almost two years now. But I could tell they'd have given me conventional treatment had I gone to them first.

Curious also as to whose been to the biggies like MDA, Sloan-Kettering, etc.

Winnie

z's picture
z
Posts: 1257
Joined: May 2009

Hi Winnie,

I know I have posted on the rca site, but I will post here for my state. Pasco County, Florida. I'm so glad your posting here too. You will help so many. Lori

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

I would like to say that I am also happy that you decided to join us. I spoke with you on the phone when the liver met was first DX'd. Still have your notes; in the event I decide to have some chemo, I will be sharing your "cocktail" recipe with my Onc! Your experiences will be so valuable to the members here.

I am in Tampa,FL and sought treatment at a local Onc center with the initial DX. Changed my course with the liver met DX and am at Moffitt Cancer Center now.

winnipeg
Posts: 24
Joined: Apr 2010

Oh Hi Lori! I didn't recognize you in your mysterious "Z" disguise.

:)

winnipeg
Posts: 24
Joined: Apr 2010

Oh Hi Lori! I didn't recognize you in your mysterious "Z" disguise. I am not sure I knew you were a Floridian.

:)

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

I did not realize that we are practically neighbors!

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

I did not realize that we are practically neighbors!

z's picture
z
Posts: 1257
Joined: May 2009

Yes, its me. I'm trying to get on rca, but for some reason I'm unable to. Do you know if the web site is down? Thanks Lori.

z's picture
z
Posts: 1257
Joined: May 2009

Joanne, Yes I have been to USF Tampa General hospital, to see Jorge Marcet Colo-Rectol professor, for my second opinion,biopsys and follow up. I just love him. Lori

winnipeg
Posts: 24
Joined: Apr 2010

Lori, I know you are Lori, but what is your username on RCA? And yes it has been down since I got up.

I got an email from the admin saying she was having some issues..yesterday? her emails to the mods were not going out. So probably maintenance or repair.

W

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

Geez girls and guys, are we a close knit group or what? Kinda reminds me of the final episode of The Mary Tyler Moore Show where they did the group hug and walk towards the door! :) There is strength in numbers--it's all good!

z's picture
z
Posts: 1257
Joined: May 2009

Winnie, My username on RCA is VV5DV0. Thanks for the info about the web site. Lori

duckyann
Posts: 162
Joined: Jun 2009

Hey girls I am on RCA too! I know you know this but I wanted to chime in....:)

Nancy

tpmack37's picture
tpmack37
Posts: 14
Joined: Apr 2010

Hello all - Tim here - roughly 20 miles NW of Philadelphia, where there are several great teaching hospitals inc. U of Penn, Thomas Jefferson, Temple, etc. None of which I'm going to, but I'm considering looking in on Penn for a 2nd opinion.

Also, in my location both NYC and Baltimore are less than 3 hours away, which opens the possibility of Sloane-Kettering (where my boss once went) and Johns-Hopkins. You never know.

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

So good to see you on here. You are in a great location for many options--much better than the middle of nowhere. There is a Dr. Stephen Goldstone in NYC who specializes in diseases of the anus/rectum. Perhaps a telephone consult between your physician and Dr. Goldstone would provide you with info on a top-notch facility for anal cancer treatment in that area. I have not personally been seen by this doctor, but have communiated with others who have and they have been quite impressed with his knowledge of this disease. Just google him and you can get some info on him if you wish.

tpmack37's picture
tpmack37
Posts: 14
Joined: Apr 2010

Good to be here! And good to make connections and learn things that could help me live longer!

I finally wrote an introduction on the Rare Cancer page. I hope I didn't spend too much time dwelling on my bowel difficulties and not enough time on the treatments of the cancer? It has been a major problem - still is.

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

Hi Tim--

I found what you wrote on your profile on RCA but did not find a post. So that others can see your introduction, you need to post it from the topic index page, either by clicking on the topic "Introduce Yourself" or by clicking on "New Topic" and starting a new thread. Also, if you type a post, you must click on "submit", not "save", in order for it to be viewable by other members. If you save it, it is only viewable to you until you submit it. I hope you will post on there so that you can get feedback from other members. It's also great to see you on here, as there is lots of good advice from ACS members.

tpmack37's picture
tpmack37
Posts: 14
Joined: Apr 2010

I followed her directions - they may be new? It may be different since you signed up. She has a welcome page and and asks you to put your intro in. She has it set up so all the intros are in one place.

Mine is here:
http://www.rare-cancer.org/forum/viewtopic.php?f=143&t=3626

It doesn't fall under "anal Cancer" but it falls under "Introductions"

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

I finally found your intro on RCA in the public viewing section where people can post their stories. You certainly have been through a lot, some I can relate to, some not. Your last statement on there about should this story appear in the anal cancer section--YES! When you are on the home page of RCA, just scroll down until you see a topic listed for anal cancer, rare cancers of the rectum, etc., etc. This forum can only be viewed by members. Click on that and you will be on the forum for anal/rectal cancer only. If you can swing it, just copy and paste your story from one place to the other. Our anal cancer members needs to hear your story so they can respond and give you support. I am also going to post a message to everyone on there to look for your story on the home page. There are many people there who will want to offer your support. My thoughts and prayers are with you.

Martha

z's picture
z
Posts: 1257
Joined: May 2009

Horsepad This is Winnie on CSN Winnipeg, and she is still ned Lori

eihtak
Posts: 850
Joined: Oct 2011

I'm in Central Wisconsin, little town called Mosinee. I was treated through the Marshfield Clinic. I am about 3hrs north of Milwaukee and/or 3hrs east of Minniapolis.

torrance
Posts: 118
Joined: Jan 2012

Winnie,

Hi, I must be near you. I am in so cal and was treated at Kaiser Sunset. My best friend was treated at City of Hope! We should chat and meet up!

Joanne

Missgrace's picture
Missgrace
Posts: 37
Joined: Apr 2012

I am in jacksonville, FL and am being treated at the mayo clinic here.

lil lady
Posts: 36
Joined: May 2009

I WAS TREATED AT CITY OF HOPE..THEY WERE GREAT

torrance
Posts: 118
Joined: Jan 2012

Where in So Cal r u?

MyHopen413
Posts: 38
Joined: Mar 2012

I live in rural, northwest Oklahoma. I was treated at Dexeus Oncology in Enid. He worked at MDA and is a fabulous doctor. He still consults with MDA (he did on my case) and the pathologist here sent my slides to the Mayo Clinic, so I never felt the need to go anywhere else.

eihtak
Posts: 850
Joined: Oct 2011

I posted earlier that I was treated in Central Wisconsin. Just in case you were doing some sort of tracking thought I'd throw in that I was first treated for Stage3 Anal Cancer but recently diagnosed with a rare Breast Cancer...Secretory Carcinoma (accounts for < 1% of all BC). I had a double mastectomy and am currently taking Arimidex as my cancer was ER+. I feel always on watch for liver mets from one or both!

sandysp's picture
sandysp
Posts: 811
Joined: May 2011

I am in Yonkers, NY and am a patient of Sloan Kettering. I had chemo and radiation and everyone seems to know exactly what they are doing. I have good follow up care. One thing they say though, is that when it comes to recovery, everyone is different. But I think MSK is an amazing cancer center and can't say enough good things about it. I felt lucky to be close to it.

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

I'm in Massachusetts and was treated at the Lahey Clinic in Burlington MA. They were excellent. If anyone needs a really good oncologist in the New England area, I highly recommend Dr Keith Stuart at the Lahey Clinic - he's wonderful.

horsepad's picture
horsepad
Posts: 84
Joined: Apr 2012

I am going to Cleveland Clinic. I thought about Sloan-Kettering and the Cancer Center in Texas. I am raising 2 of my grandchildren, and didn't want to have worry about my girls while gone. Glad I chose to stay close to home because now I am also a widow. I am stage 4, mets to the liver when diagnosed last August. Today after, chemo, radiation and liver surgery I am cancer free with no major side effects. Thank you Lord!

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Good to see you here Winnie and so good to hear from you Joanne, our founder! Hope you are both well.

I live in Colorado. I was treated at MD Anderson in Houston Texas.

Liz

sephie's picture
sephie
Posts: 529
Joined: Apr 2009

hey, i am from louisiana and went to MD Anderson. still go back for check ups. will be 3 years july 20. sephie

Angela_K
Posts: 374
Joined: Jan 2011

I am from San Angelo, Texas and was treated by an outstanding team of four oncologists, led by Lucas Wong, MD, at Vasicek Cancer Treatment Center at Scott & White Medical Center, Temple, Texas.

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

From New Mexico - went (and am still going) to MD Anderson. In remission at 8 months post treatment

AZANNIE
Posts: 390
Joined: Mar 2011

I'm in Arizona. I was treated by an oncologist in private practice who recommended the radiation oncologist.

Ann

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

I am in the Atlanta Metro area. I received treatment very close to home and had the most wonderful docs.

calimac
Posts: 18
Joined: Nov 2011

I am in Manitoba Canada. being treated at Cancer Care Manitoba. Which is in Winnipeg.
Cali

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