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

winnipeg
winnipeg Member Posts: 23
edited March 2014 in Anal Cancer #1
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
«1

Comments

  • z
    z Member Posts: 1,414 Member
    #2
    State
    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
  • winnipeg
    winnipeg Member Posts: 23
    #3
    z said:

    State
    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

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

    :)
  • winnipeg
    winnipeg Member Posts: 23
    #4
    z said:

    State
    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

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

    :)
  • JDuke
    JDuke Member Posts: 438
    #5
    z said:

    State
    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

    Winnie
    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.
  • JDuke
    JDuke Member Posts: 438
    #6
    winnipeg said:

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

    :)

    Lori
    I did not realize that we are practically neighbors!
  • JDuke
    JDuke Member Posts: 438
    #7
    winnipeg said:

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

    :)

    Lori
    I did not realize that we are practically neighbors!
  • z
    z Member Posts: 1,414 Member
    #8
    winnipeg said:

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

    :)

    Z or vv5dv0
    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
    z Member Posts: 1,414 Member
    #9
    z said:

    Z or vv5dv0
    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.

    Neighbors
    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
    winnipeg Member Posts: 23
    #10
    z said:

    Neighbors
    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

    Lori, I know you are Lori,
    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
    mp327 Member Posts: 4,440 Member
    #11
    winnipeg said:

    Lori, I know you are Lori,
    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

    Togetherness
    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
    z Member Posts: 1,414 Member
    #12
    winnipeg said:

    Lori, I know you are Lori,
    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

    Winnipeg
    Winnie, My username on RCA is VV5DV0. Thanks for the info about the web site. Lori
  • duckyann
    duckyann Member Posts: 159
    #13
    z said:

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

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

    Nancy
  • tpmack37
    tpmack37 Member Posts: 14
    #14
    Location
    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
    mp327 Member Posts: 4,440 Member
    #15
    tpmack37 said:

    Location
    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.

    Hi Tim
    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
    tpmack37 Member Posts: 14
    #16
    mp327 said:

    Hi Tim
    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.

    Good to have these connections
    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
    mp327 Member Posts: 4,440 Member
    #17
    tpmack37 said:

    Good to have these connections
    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.

    Introduction
    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
    tpmack37 Member Posts: 14
    #18
    mp327 said:

    Introduction
    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.

    Intro location
    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
    mp327 Member Posts: 4,440 Member
    #19
    tpmack37 said:

    Intro location
    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"

    Finally found it, Tim!
    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
    z Member Posts: 1,414 Member
    #20
    Horsepad this is Winnie
    Horsepad This is Winnie on CSN Winnipeg, and she is still ned Lori
  • eihtak
    eihtak Member Posts: 1,473 Member
    #21
    Hi
    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.

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