Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatm

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  • Jen457
    Jen457 Member Posts: 2
    Serous EIC
    Hi Ladies,
    Just found this site, have been reading and posting to an ovarian cancer site as I was told that this type of cancer acts more like ovarian cancer than uterine. The EIC stands for Endometrial Intraepithelial carcinoma. On the lab report it states with peritoneal carcinomatosis so I am stage 4. Had 11 of 20 test positive. I had breast cancer in '94 and this could be the result of the tamoxiphen I took to prevent reoccurrence of breast cancer. I had a hysty in 2007, did six rounds of carbo and had a reoccurrence in Aug 2008. Tried chemo again but blood counts were terrible for so long that they tested the tumor and went on Megace for 3 months. Loved it. A pill in the morning and one in the evening but the Megace did not work. Had a terrible cat scan in January 2009. Changed to Avastin, Cisplatin and Gemzar in January and had a reaction to the Cisplatin--not fun. Genentech is picking up the tab for the Avastin since I meet income guidelines. Had a great cat scan in April but tumor markers started going up in late May. Had another cat scan and they found one tumor so was switched to Avastin and Taxol. Am getting neuropathy in my hands and feet. My doctor has told me that the chemos insurance will pay for are limited as this type of cancer has not been studied much and the chemo has to be on one of three lists. Overall, I am doing fine right now. I am going on a bus trip to New Orleans so am looking forward to that. I hope all of you have something fun planned on your calendars.
  • hellokittymary
    hellokittymary Member Posts: 2

    Welcome, Desertflower! Try not to worry.
    If there's one thing I've learned by this cancer experience, it's that 'borrowing trouble' by trying to anticipate every possible contingency will only exhaust and distress you. So please try not to let your imagination go wild, peeking around every corner ahead of time. Your symptoms and test results so far don't sound like cancer to me, at least not the scary aggressive UPSC kind that I have, which is a cancer with NO symptoms and NO pain. And bleeding and swelling would be the symptoms I would expect for the more common type of highly-curable uterine cancer. So, deep breath! (When you see all of my cancer research on this Board, you will be tempted to shoot back that I should 'practice what I preach', but I have always been insatiably curious and research-oriented about every interesting thing that captures my imagination, and now "cancer" is on that list! I've always been that way, and perhaps we are kindred spirits in that regard. You wouldn't believe all the useless information in my head on a million different topics!)

    And if it turns out that it is cancer, we're here for you. If you get the cancer diagnosis, THEN you'll want to be very pro-active, informed and prepared for each step of the journey. But for now, pre-diagnosis, 'ignorance is bliss', so try not to make yourself crazy just yet. BIG HUGS! We all know how scary this is!

    Cancer :)
    Hi. My name is Mary and i'm new to this site...I was dianosed after having a sonogram for a side pain in my right ribs about a month ago...After numerous tests and biopsies, they still aren't sure of the pimary so they are senidng me to City of Hope in L.A. county. They are pointing to the Uterus as the cause though, and said it has metastisized to the liver and bile duct of my pancreaus also two possible spots in my lungs...I'm 41 and very scared. I get my port in after his weekend to start chemo as this is supposed to be very aggressive cancer, so they said enough testing...They are putting me on Gemcitabine and Platinol...Has anyone ever heard of this? Thank you and God Bless you all.-Mary
  • wuzzle
    wuzzle Member Posts: 8
    New to Cancer Survivors Network
    My name is Janis and I live in southeast Michigan. My husband calls me wuzzle.
    I had a hysterectomy in 2007 and we found uterine cancer II-b. I opted for brachytherapy - yuck!. I had a recurrence in 2008 and did 6 chemos of Taxol/carbo. I had another recurrence in 2009 and did 25 abdominal radiation treatments and started Doxol chemo. Last Friday, the doctors stopped the Doxol treatments because my CA125 kept doubling, now at 107. I have a Cat scan on Thursday and talk to the doctors on the following Tuesday. I am scared and tired and I guess that has made me reach out to you and sign up on this website.

    Thanks for listening,
    Janis
  • bonniesue
    bonniesue Member Posts: 124
    wuzzle said:

    New to Cancer Survivors Network
    My name is Janis and I live in southeast Michigan. My husband calls me wuzzle.
    I had a hysterectomy in 2007 and we found uterine cancer II-b. I opted for brachytherapy - yuck!. I had a recurrence in 2008 and did 6 chemos of Taxol/carbo. I had another recurrence in 2009 and did 25 abdominal radiation treatments and started Doxol chemo. Last Friday, the doctors stopped the Doxol treatments because my CA125 kept doubling, now at 107. I have a Cat scan on Thursday and talk to the doctors on the following Tuesday. I am scared and tired and I guess that has made me reach out to you and sign up on this website.

    Thanks for listening,
    Janis

    wuzzle--PET CT fusion
    so sorry to hear of the reoccurrences. I am not sure of what grade you are or where are your reoccurrence but maybe a PET/CT fusion overlay (NOPR) study to see better reoccurence. How many lymph nodes did you have sampled originally and do you know the depth of invasion or grade. Could you get your parafilm block of path and see what chemoreceptors would work by having it tested? It is very upsetting and these are just questions I would have. I am glad you have a supportive hubby as this is a plus. You and he are in my prayers.
  • wuzzle
    wuzzle Member Posts: 8
    bonniesue said:

    wuzzle--PET CT fusion
    so sorry to hear of the reoccurrences. I am not sure of what grade you are or where are your reoccurrence but maybe a PET/CT fusion overlay (NOPR) study to see better reoccurence. How many lymph nodes did you have sampled originally and do you know the depth of invasion or grade. Could you get your parafilm block of path and see what chemoreceptors would work by having it tested? It is very upsetting and these are just questions I would have. I am glad you have a supportive hubby as this is a plus. You and he are in my prayers.

    BonnieSue - I will be seeing the doctors next Tuesday and I will ask about the parafilm block of path you mentioned and about the chemoreceptors. I know that my cancer is estrogen positive and that the original staging was 2-b. I had 20 lymph nodes removed during the original hystorectomy that were clear of cancer. I currently have 4 lymph nodes that have 2-3 cm cancer growths in them in my abdomen area.

    Thanks for writing back and for the suggestions. It's nice to make contact! Thanks for the prayers. I am sending good wishes to you and yours. Janis
  • bonniesue
    bonniesue Member Posts: 124
    wuzzle said:

    BonnieSue - I will be seeing the doctors next Tuesday and I will ask about the parafilm block of path you mentioned and about the chemoreceptors. I know that my cancer is estrogen positive and that the original staging was 2-b. I had 20 lymph nodes removed during the original hystorectomy that were clear of cancer. I currently have 4 lymph nodes that have 2-3 cm cancer growths in them in my abdomen area.

    Thanks for writing back and for the suggestions. It's nice to make contact! Thanks for the prayers. I am sending good wishes to you and yours. Janis

    janis wuzzle
    Good, hope you get some answers. maybe also get a copy of your path report. What grade are you or UPSC or well differentiated? It is difficult to sometimes get info as you want what works the best for you. Blessings. bonnie
  • This comment has been removed by the Moderator
  • california_artist
    california_artist Member Posts: 816 Member
    bonniesue said:

    janis wuzzle
    Good, hope you get some answers. maybe also get a copy of your path report. What grade are you or UPSC or well differentiated? It is difficult to sometimes get info as you want what works the best for you. Blessings. bonnie

    Bringing this to the top again for new members or any others tha
    might like to add to their original posts.
  • unknown said:

    This comment has been removed by the Moderator

    This comment has been removed by the Moderator
  • lociee
    lociee Member Posts: 102
    wuzzle said:

    New to Cancer Survivors Network
    My name is Janis and I live in southeast Michigan. My husband calls me wuzzle.
    I had a hysterectomy in 2007 and we found uterine cancer II-b. I opted for brachytherapy - yuck!. I had a recurrence in 2008 and did 6 chemos of Taxol/carbo. I had another recurrence in 2009 and did 25 abdominal radiation treatments and started Doxol chemo. Last Friday, the doctors stopped the Doxol treatments because my CA125 kept doubling, now at 107. I have a Cat scan on Thursday and talk to the doctors on the following Tuesday. I am scared and tired and I guess that has made me reach out to you and sign up on this website.

    Thanks for listening,
    Janis

    similar road
    Hi Janis, by name is Mia. I had a hysterectomy three years ago tomorrow (Halloween). Then two years of pain - then the discovery of a tumor - uterine cancer spread - tumor along my colon and a tumor on my lung. Had carbo/taxol last fall - then radiation, 25 full pelvic/7 blasts to the pelvic tumor. Cat scan shows the tumor is starting to grow again. They want me to start hormonal treatment - then back to taxol. But..... I have so many aches and pains from radiation that I don't feel I can take anything else on. My CA125 remains low - @9 - but the tumor grows! So much for the CA125. What happened with your CAT scan? Mine is in about two weeks. I understand the scared and tired. I am, too!
  • susie1143
    susie1143 Member Posts: 105
    lociee said:

    similar road
    Hi Janis, by name is Mia. I had a hysterectomy three years ago tomorrow (Halloween). Then two years of pain - then the discovery of a tumor - uterine cancer spread - tumor along my colon and a tumor on my lung. Had carbo/taxol last fall - then radiation, 25 full pelvic/7 blasts to the pelvic tumor. Cat scan shows the tumor is starting to grow again. They want me to start hormonal treatment - then back to taxol. But..... I have so many aches and pains from radiation that I don't feel I can take anything else on. My CA125 remains low - @9 - but the tumor grows! So much for the CA125. What happened with your CAT scan? Mine is in about two weeks. I understand the scared and tired. I am, too!

    Update on Treatment
    Just an update from my previous information. I'm Stage 1C, Grade 2 endometrial cancer. Had surgery Aug 26th and will start Brachy Tuesday morning at Moffitt Center. Moffitt is located in Tampa, FL.
  • newbornbunny
    newbornbunny Member Posts: 15
    My stage
    endometrial cancer--all doctor said was Stage 1 but "iffy." iffy

    I have had complete hysterectomy and have finished 28 radiation treatments. Supposedly these will cure me.
  • Ro10
    Ro10 Member Posts: 1,561

    My stage
    endometrial cancer--all doctor said was Stage 1 but "iffy." iffy

    I have had complete hysterectomy and have finished 28 radiation treatments. Supposedly these will cure me.

    newbornbunny Welcome to this site
    I hope the radiation does cure you. That would be wonderful. Wishing you this best of luck. In peace and caring.
  • cathyK
    cathyK Member Posts: 93
    wuzzle said:

    New to Cancer Survivors Network
    My name is Janis and I live in southeast Michigan. My husband calls me wuzzle.
    I had a hysterectomy in 2007 and we found uterine cancer II-b. I opted for brachytherapy - yuck!. I had a recurrence in 2008 and did 6 chemos of Taxol/carbo. I had another recurrence in 2009 and did 25 abdominal radiation treatments and started Doxol chemo. Last Friday, the doctors stopped the Doxol treatments because my CA125 kept doubling, now at 107. I have a Cat scan on Thursday and talk to the doctors on the following Tuesday. I am scared and tired and I guess that has made me reach out to you and sign up on this website.

    Thanks for listening,
    Janis

    hello wuzzle
    I am in middle michigan, and am going to southern michigan to ann arbor to my Gyn/ Onc at the U of michigan, are you going there for treatment? who are you seeing there? hope your cat scan came out clear! e mial me if you want to , [email protected]
    cathyK
  • newbornbunny
    newbornbunny Member Posts: 15
    Ro10 said:

    newbornbunny Welcome to this site
    I hope the radiation does cure you. That would be wonderful. Wishing you this best of luck. In peace and caring.

    insufficient information
    Why do all of the people on this site know so much about your conditions--and all I know is Stage 1, "iffy," and "internal sunburn?" I definitely was not given sufficient information about my condition by any of my three doctors. I had to go to all of my appointments alone--no family, friends all work--and I was too stunned (and ignorant) to know what questions to ask. This problem concerns me a great deal. Basically, I know almost nothing about my condition.
  • newbornbunny
    newbornbunny Member Posts: 15
    Ro10 said:

    newbornbunny Welcome to this site
    I hope the radiation does cure you. That would be wonderful. Wishing you this best of luck. In peace and caring.

    insufficient information
    Why do all of the people on this site know so much about your conditions--and all I know is Stage 1, "iffy," and "internal sunburn?" I definitely was not given sufficient information about my condition by any of my three doctors. I had to go to all of my appointments alone--no family, friends all work--and I was too stunned (and ignorant) to know what questions to ask. This problem concerns me a great deal. Basically, I know almost nothing about my condition.
  • Kaleena
    Kaleena Member Posts: 2,081 Member

    insufficient information
    Why do all of the people on this site know so much about your conditions--and all I know is Stage 1, "iffy," and "internal sunburn?" I definitely was not given sufficient information about my condition by any of my three doctors. I had to go to all of my appointments alone--no family, friends all work--and I was too stunned (and ignorant) to know what questions to ask. This problem concerns me a great deal. Basically, I know almost nothing about my condition.

    Ask for your reports. It
    Ask for your reports. It should say on there. Also, take a list of questions to ask. I know once you get there your mind blanks out. I found out a lot of what to ask from this site. It has helped a lot.
  • NeiceyMe
    NeiceyMe Member Posts: 1
    Saying Hello
    My name is Teri and I have been lurking round the board for a couple of week. I live in a small town called Klamath Falls in beautiful southern Oregon. I am the very proud mother of three children, Jeremiah 29; Victoria 25 and Shania 5. I also have two granddaughers Josslyn and Miah who are age 2. I was diagnosed in Sept. 09 and had a radical hysterectomy, oophrectomy and lymphedectomy at Oregon Health & Science University in Portland on October 20, 2009 (two days before my 49th birthday). My tumor invaded 95% through the uterine wall and was 6.5 cm, of the 18 lymphnodes taken one peri was positive. I am Class 2 Stage IIIc when I left the hospital, but now am Class 2 Stage IIIa (not sure what caused the change). I am sitting in the chemo chair receiving my second infusion of carbo and taxol as I write this posting. I am slated for three rounds followed by 25 rounds of exteral radiation (am hoping to also work with my radiologist to get brachytherapy) and finishing up with three additional rounds of chemotherapy.

    My five year old and I are currently living with my folks and they are taking care of us bot, what an amazing blessing they have been to us. My son has been my biggest advocate and resource (he is a widower who lost his wonderful wife to melanoma just three weeks after giving birth to their first child and passed away 84 days after diagnosis).


    I am looking forward to getting to know many of you as we share this journey together. Linda P I have been following you closely and am so inspired by your positive outlook, "go for it attitude" and joyful heart.
  • deanna14
    deanna14 Member Posts: 732
    NeiceyMe said:

    Saying Hello
    My name is Teri and I have been lurking round the board for a couple of week. I live in a small town called Klamath Falls in beautiful southern Oregon. I am the very proud mother of three children, Jeremiah 29; Victoria 25 and Shania 5. I also have two granddaughers Josslyn and Miah who are age 2. I was diagnosed in Sept. 09 and had a radical hysterectomy, oophrectomy and lymphedectomy at Oregon Health & Science University in Portland on October 20, 2009 (two days before my 49th birthday). My tumor invaded 95% through the uterine wall and was 6.5 cm, of the 18 lymphnodes taken one peri was positive. I am Class 2 Stage IIIc when I left the hospital, but now am Class 2 Stage IIIa (not sure what caused the change). I am sitting in the chemo chair receiving my second infusion of carbo and taxol as I write this posting. I am slated for three rounds followed by 25 rounds of exteral radiation (am hoping to also work with my radiologist to get brachytherapy) and finishing up with three additional rounds of chemotherapy.

    My five year old and I are currently living with my folks and they are taking care of us bot, what an amazing blessing they have been to us. My son has been my biggest advocate and resource (he is a widower who lost his wonderful wife to melanoma just three weeks after giving birth to their first child and passed away 84 days after diagnosis).


    I am looking forward to getting to know many of you as we share this journey together. Linda P I have been following you closely and am so inspired by your positive outlook, "go for it attitude" and joyful heart.

    Welcome Teri!
    Sorry to hear that you are going through this, but happy that you have found the wonderful ladies on this board.
    Linda is an amazing inspiration!
    I hope you find this place to be very supportive. There is something very comforting about being able to talk with people who have "been there, done that."
    Good luck and good health to you!
  • shortmarge
    shortmarge Member Posts: 291
    deanna14 said:

    Welcome Teri!
    Sorry to hear that you are going through this, but happy that you have found the wonderful ladies on this board.
    Linda is an amazing inspiration!
    I hope you find this place to be very supportive. There is something very comforting about being able to talk with people who have "been there, done that."
    Good luck and good health to you!

    Hello Teri
    Sad to hear you have joined us but glad you found us... Lot's of wonderful women here with great support and information.

    So sorry to hear about your sons wife, so, so sad.

    Please join in with all the conversations, we are all here holding each others hands!

    Marge