still looking for same type cancer with success story, none to be found :(

cathyK
cathyK Member Posts: 93
edited March 2014 in Uterine/Endometrial Cancer #1
I have been diagnosed with metastatic endometrioid adenocarcinoma stage 4 b grade g3 have looked through many many web sights lots of stories about breast cancer survivors, stage 1 and 2 uterine cancers stage 1 endometrial cancer but none with stage 4 b , am I just hoping too much.
I did have problems talking to my doctor, and we had it out 3 days ago, he won one round I won the next and we came to an understanding , and he is still not hopeful at best but better at talking at least.
my port flipped 1 week before my second chemo, thought I was imagining things when I felt flat surface instead of the bump from the rubber port entry, phoned the doc who put it in , said don't worry, if it is not infected don't worry, went to chemo and they stuck me 3 times before saying hey, the port flipped, went to x ray then on the table again, the new doc said I could try to flip it with my fingers, with a general it HURT so she opted to open me up AGAIN and flipped it, and left a needle in to make sure it stayed in place, it stays in for 4 days , out tomorrow. anoying, remind the doc doing your port to stitch all 4 sides to make sure it stays put!!! my doc said 5 ports flipped in the past 2 years, not fun!
any how anyone got places I can look? getting a little discouraged, just a little
cathy
«1

Comments

  • california_artist
    california_artist Member Posts: 816 Member
    #2
    Found a place on line
    Go to this thread on this discussion board and look for pj

    "Got my 'post-treatment' TESTS schedule; my 'no doctoring' break is about over."

    Also, I found this url on line--typed in : surviving uterine papillary serous carcinoma.

    http://www.eyesontheprize.org/stories/carolh.html

    This woman had lived for six years when she last posted. I know there are people who are alive and well, only they usually quit comng on here once they're well again. The girls will be back online tomorrow and I know they'll give you hope. They are more familiar with each others stories.

    There is of course lots to be hopeful about.

    claudia

    947-517-9417 if you feel really lost.
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • cathyK
    cathyK Member Posts: 93
    #4
    unknown said:

    This comment has been removed by the Moderator

    was just thinking about you
    hello Patricia,
    thanks for the upbeat note and thanks to claudia too, yes I am as upbeat as I can be. bored , wanting to work and had been told NO WAY to travel, or 13 hr work or hot dusty dirty climate, I am a vendor at Christian music festivals, and did get 3 in 1 inbetween the biopsy, 1 between the historectomy, and 1 just before my first chemo, this is the only money coming in, so had to do them as the doc said it was not good to do, I had so many friends helping me they wouldnt let me do much at my booth! I sell 1 inch buttons. the kids love them, and my second business starts in november, clipping race horses down south, and doc says I cant do that. he did say since I did well with chemo last time and IF I take it easy I can do a 1 day events but there are none that are close to me in between the 21 day chemo, the blood tests and white blood cell crash.
    on to your question..........

    I said ......."I did have problems talking to my doctor, and we had it out 3 days ago, he won one round I won the next and we came to an understanding , and he is still not hopeful at best but better at talking at least."

    Patricia asked..........When you say he is not hopeful. Is that about his attitude about your survivning this ?

    he is not hopefull at more than 2 years , says he will have no knowledge as to if the chemo is working till the series is over.
    the homeboy thing is non existant at this point, dont want a homeboy just a doctor that is going to be caring conciderite and concerned is that too much to ask ? seems so with him, (I am a poor speller but fingers are now really not hitting right keys sorry)
    any how he did start by standing at the door asking me if I still want him as a doctor, I said if I see a caring team , conciderate and concern from him and his nurse, he rolled his eyes and off we went, after a few questions he sat down in front of me and actually talked to me which was much better and talked for around 15 min, as the last 2 times in person and 2 times on the phone totaled 10 min for all of them together.
    so off to get the port needle out of the port today whoo hoo, it is anoying at best now I have 2 weeks of healing of the incision they made to flip it!
    I will post when I can,
    and that horse is my buddy, he is not mine but at a good retirement home, his name is chester, he was my horse drawn carriage horse in memphis for 15 years, my exclusive horse no one else could handle him, we had an understanding , Id let him play if he would work for me too. he was push button and verbal command, we gave rides to st jude kids and their families and I would let the kids take the reigns, knowing Chester would never do anything wrong, I would give verbal commands and then say hey pull this reigh or pull both, they LOVED IT, kept their minds off their cancer! I took pics of them and one father came up to me thanking me for driving his son, he had the picture in front of him all the time and said when he got better he would drive chester again but he died. very sad but glad he had a great last few months.
    chester was spirited, and they finaly gave up and retired him when he took new drivers for a ride from hell like running towards trollies, jacknifing the carriage and running back home, and alike , they didnt have any good experienced drivers as they all quit and hired on with other companies (change of ownership) chester's last driver had him for 12 years and was given him free to take home, he has never had vacation in what we think is 30 years of work, we guess he is between 30 and 40. looks and acts like a 5 year old , the second he gets let loose he plays bowling for horses and runs all the horses around kicking at them EVERY DAY, if horses are not out, he goes for the canadian geese or what every is in HIS field. love him dearly and glad he got to retire!
    more posts later, if I can remember :)

    thanks again all
    cathy
  • deanna14
    deanna14 Member Posts: 732
    #5
    (((Cathy)))
    Please don't get discouraged! Keep your eye on the Lord, he will be with you through whatever comes. I think attitude is everything!
    I was reading an article just yesterday about Scott Hamilton, the Olympic Figure Skater, I knew he had prostate cancer, but didn't know it was Stage III. They did not expect him to live and now he is cancer free! He has written a book, I don't recall the name of it, but it sounds like a good one. I frequently hear stories like his about people with Stage III and IV cancers that refuse to be sick, refuse to let it get the best of them and actually end up beating the cancer!
    In my prayers,
    Deanna
  • california_artist
    california_artist Member Posts: 816 Member
    #6
    cancer success story
    Hi, Cathy,

    Uterine papillary serous carcinoma, which is what you have? is very similar in treatment modes to ovarian cancer. What follows is a quote from a page of one of the ovarian cancer survivors. She talks about radio frequency ablation, which I had heard of as very promising before and then never heard anything about again.

    What types of treatment(s) have occurred?
    Since I had tumors in my liver when diagnosed, I was put at Stage IV and had to have four chemo (taxol and carbo) treatments to shrink the cancer before the debulking surgery. Major debulking surgery done 4 months after diagnoses and the optimum effect was obtained. Now I will go on chemo (taxol and carbo) for 4-6 cycles.

    The surgeons were able to remove the three tumors from my liver with radio frequency ablation, and took the entire spleen. There was no colon involvement as we thought possible. Update: I completed 9 chemos in total and was pronounced "no evidence of disease" . I have chosen to take a 12 month consolidation dose of taxol given every 4 weeks to clean out other random cells of the Stage IV cells that might be roaming. All in all, I have had optimum results every step of the way. After 11 of the 12, the taxol was stopped and CA125 is 50. CT scan and physical are not showing anything. I was put on oral Femara an anti estrogen to see if that will help bring the CA125 down and give me a rest from chemo. After 2 months of Femara my CA125 fell from 84 to 48.

    My most heart felt wishes to you,

    claudia
  • cathyK
    cathyK Member Posts: 93
    #7
    deanna14 said:

    (((Cathy)))
    Please don't get discouraged! Keep your eye on the Lord, he will be with you through whatever comes. I think attitude is everything!
    I was reading an article just yesterday about Scott Hamilton, the Olympic Figure Skater, I knew he had prostate cancer, but didn't know it was Stage III. They did not expect him to live and now he is cancer free! He has written a book, I don't recall the name of it, but it sounds like a good one. I frequently hear stories like his about people with Stage III and IV cancers that refuse to be sick, refuse to let it get the best of them and actually end up beating the cancer!
    In my prayers,
    Deanna

    (((Cathy)))
    hey thanks for the posts all
    Deanna
    no worries so far, had some problems with port flipping, (things always happen to me ) I have kept a stiff upper lip, so far, had a couple down times thinking of not having animals around me . or my friends from the fests I only see once a year for some of them,.
    but they are calling me and e mailing , and some are even selling my buttons at their booth. which is amazing giving up precious space at their booth to help me with $
    I have from day one felt ok, just ok, everything as usual, until the biopsy, got MAJOR cramps and bleeding then second doc, doing historectomy, pain from incision, and chemo very little extreme problems, slight pain here and there, and pain to the bone feel with white blood cell shot, swelled face for a few hours, feel 95 years old for 2 or so days, sower stomach once in a while, but ok , as normal, dont feel sick, can see my hair leaving my head, and know I am sick, but cant feel it, which is great thank God for that. that is why I asked the doc if I could do festivals, he gave me rules but I can not find one that I can do around all the hospital visits :(
    but again I say I feel fine, so thinking maybe maybe it was a miss diagnosis, but reading the reports, doc took out uterise with a 5.5 tumor and another tumor in the abdomine. and said "got the impression that she had widely metastatic disease, at least microscopically through the peritoneum" took out 4 limp nodes which were positive, pelvic washing positive. got most of the paper work in my file, not all but most,
    so up and down about if they may be wrong, praying this is so, I feel ok and keep reminding me of this,
    one thing I have to work on , they are going to do another mugascan because the first one was borderline 49 and they are worried my heart may not take it, heart has been fine, no extreme heart beats, or alike,
    gotta get out and walk more, I hate walking , I like working!! any thoughts on upping my heart strength ? with out over doing it?
    thanks again, sorry for the rolling on and on and on,
    cathy
  • Unknown
    Unknown
    #8
    cathyK said:

    (((Cathy)))
    hey thanks for the posts all
    Deanna
    no worries so far, had some problems with port flipping, (things always happen to me ) I have kept a stiff upper lip, so far, had a couple down times thinking of not having animals around me . or my friends from the fests I only see once a year for some of them,.
    but they are calling me and e mailing , and some are even selling my buttons at their booth. which is amazing giving up precious space at their booth to help me with $
    I have from day one felt ok, just ok, everything as usual, until the biopsy, got MAJOR cramps and bleeding then second doc, doing historectomy, pain from incision, and chemo very little extreme problems, slight pain here and there, and pain to the bone feel with white blood cell shot, swelled face for a few hours, feel 95 years old for 2 or so days, sower stomach once in a while, but ok , as normal, dont feel sick, can see my hair leaving my head, and know I am sick, but cant feel it, which is great thank God for that. that is why I asked the doc if I could do festivals, he gave me rules but I can not find one that I can do around all the hospital visits :(
    but again I say I feel fine, so thinking maybe maybe it was a miss diagnosis, but reading the reports, doc took out uterise with a 5.5 tumor and another tumor in the abdomine. and said "got the impression that she had widely metastatic disease, at least microscopically through the peritoneum" took out 4 limp nodes which were positive, pelvic washing positive. got most of the paper work in my file, not all but most,
    so up and down about if they may be wrong, praying this is so, I feel ok and keep reminding me of this,
    one thing I have to work on , they are going to do another mugascan because the first one was borderline 49 and they are worried my heart may not take it, heart has been fine, no extreme heart beats, or alike,
    gotta get out and walk more, I hate walking , I like working!! any thoughts on upping my heart strength ? with out over doing it?
    thanks again, sorry for the rolling on and on and on,
    cathy

    This comment has been removed by the Moderator
  • cathyK
    cathyK Member Posts: 93
    #9
    unknown said:

    This comment has been removed by the Moderator

    thanks Claudia and
    thanks Claudia and Patricia.
    problem with my Doc is he is both oncologist and surgeon and specialist, he is it, along with his nurse, who I have to go through to get any answers. at our last meeting a part of his wall came down and hopeing that the rest of the wall comes down next visit.
    I worked for the guy who made the deal with St Jude Hospital, his deal was that it was a good tax write off, but to some of the carriage drivers it was just plain fun to have the kids ride with us and see their joy and seeing them forget their pain.
    the buttons , well I have a sort of web sight. it is
    http://web.mac.com/showyourfaith
    and am working on buttons for cancer patients and survivors, yes I make them at home and usually sell them at Christian music festivals and youth conferences. and now on line. have not found any fests that work around my chemo/side effect/blood test, times.
    thanks again all

    cathy K
  • lociee
    lociee Member Posts: 102
    #10
    Time
    Hi Cathy, we have the same diagnosis. Actually last winter they gave me only 9-12 months to live. Now they think I will be around longer. I'm in pain, but stay very active. Soon I will return to work. (High School teacher) and I actually am looking forward to it. I've spend the summer organizing and downsizing - which kept me busy and I actually enjoy this new streamlined life. I've done the surgery - the chemo - the radiation - uterine stage 4, grade 3 is serious. As my numbers creep up they will do another round of taxol - which will most likely calm things down again for awhile - but then, as my doc says, "there will be no more ammunition left to try." It's scary - but I've grown accustomed to it, and it's okay.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #11
    lociee said:

    Time
    Hi Cathy, we have the same diagnosis. Actually last winter they gave me only 9-12 months to live. Now they think I will be around longer. I'm in pain, but stay very active. Soon I will return to work. (High School teacher) and I actually am looking forward to it. I've spend the summer organizing and downsizing - which kept me busy and I actually enjoy this new streamlined life. I've done the surgery - the chemo - the radiation - uterine stage 4, grade 3 is serious. As my numbers creep up they will do another round of taxol - which will most likely calm things down again for awhile - but then, as my doc says, "there will be no more ammunition left to try." It's scary - but I've grown accustomed to it, and it's okay.

    loicee, you are my role model!
    I think you are incredibly awesome - can't really verbalize what my heart feels. I'm inspired by what appears to be peacefulness.

    God Bless you. Mary Ann
  • lociee
    lociee Member Posts: 102
    #12
    daisy366 said:

    loicee, you are my role model!
    I think you are incredibly awesome - can't really verbalize what my heart feels. I'm inspired by what appears to be peacefulness.

    God Bless you. Mary Ann

    Thank you Daisy!
    Your feedback was appreciated. Thanks. Also, I've followed your treatment and remember that you did not have radiation. Well.... I wish I hadn't. I ended up with some "long term" effects. It never occurred to me to ask about long term. I just asked about The Effects. Now all the bones in my pelvis are sore - my back is killing me - and I walk around like a 90 year old. But..... maybe radiation is why I'm still around. Believe me, I'm often overwhelmed. The AA saying, "One day at a time," is certainly appropriate for us.
  • Unknown
    Unknown
    #13
    lociee said:

    Thank you Daisy!
    Your feedback was appreciated. Thanks. Also, I've followed your treatment and remember that you did not have radiation. Well.... I wish I hadn't. I ended up with some "long term" effects. It never occurred to me to ask about long term. I just asked about The Effects. Now all the bones in my pelvis are sore - my back is killing me - and I walk around like a 90 year old. But..... maybe radiation is why I'm still around. Believe me, I'm often overwhelmed. The AA saying, "One day at a time," is certainly appropriate for us.

    This comment has been removed by the Moderator
  • california_artist
    california_artist Member Posts: 816 Member
    #14
    lociee treatment at stage lV
    In a prior response on this thread--Cancer success story-- I mentioned an article from a surviror who had had debulking surgery-- "The surgeons were able to remove the three tumors from my liver with radio frequency ablation..." have you asked your doctor about this proceedure?

    It just devastates me that they offer you no hope. Wanna go out for coffee?

    My thoughts are with you both.

    Claudia
  • cherylduvall
    cherylduvall Member Posts: 6
    #15
    lociee said:

    Time
    Hi Cathy, we have the same diagnosis. Actually last winter they gave me only 9-12 months to live. Now they think I will be around longer. I'm in pain, but stay very active. Soon I will return to work. (High School teacher) and I actually am looking forward to it. I've spend the summer organizing and downsizing - which kept me busy and I actually enjoy this new streamlined life. I've done the surgery - the chemo - the radiation - uterine stage 4, grade 3 is serious. As my numbers creep up they will do another round of taxol - which will most likely calm things down again for awhile - but then, as my doc says, "there will be no more ammunition left to try." It's scary - but I've grown accustomed to it, and it's okay.

    Stage IV Uterine Cancer
    Hi, my mom was diagnosed with stage IV pappilary serous Uterine cancer a few weeks ago. They did a debulking surgery and gave her a poor prognosis. Her CA-125 was 1470 befor surgery and 914 after. My sisters and I knew we had to do more and began to research. We are doing a regime of natural treatments that include B17, Essiac tea and Agaricus mushroom as well as taking suppliments and eating whole foods and taking Cell Food. So far, she has had positive results. She starts chemo this week but is staying very positive. Her swelling has completely gone away as well as constipation. I would love to stay in touch. She is 63 and has been very active and healthy until this.
  • cherylduvall
    cherylduvall Member Posts: 6
    #16
    cathyK said:

    thanks Claudia and
    thanks Claudia and Patricia.
    problem with my Doc is he is both oncologist and surgeon and specialist, he is it, along with his nurse, who I have to go through to get any answers. at our last meeting a part of his wall came down and hopeing that the rest of the wall comes down next visit.
    I worked for the guy who made the deal with St Jude Hospital, his deal was that it was a good tax write off, but to some of the carriage drivers it was just plain fun to have the kids ride with us and see their joy and seeing them forget their pain.
    the buttons , well I have a sort of web sight. it is
    http://web.mac.com/showyourfaith
    and am working on buttons for cancer patients and survivors, yes I make them at home and usually sell them at Christian music festivals and youth conferences. and now on line. have not found any fests that work around my chemo/side effect/blood test, times.
    thanks again all

    cathy K

    Stage IV Uterine Cancer
    Hi, my mom was diagnosed with stage IV pappilary serous Uterine cancer a few weeks ago. They did a debulking surgery and gave her a poor prognosis. Her CA-125 was 1470 befor surgery and 914 after. My sisters and I knew we had to do more and began to research. We are doing a regime of natural treatments that include B17, Essiac tea and Agaricus mushroom as well as taking suppliments and eating whole foods and taking Cell Food. So far, she has had positive results. She starts chemo this week but is staying very positive. Her swelling has completely gone away as well as constipation. I would love to stay in touch. She is 63 and has been very active and healthy until this.
  • Unknown
    Unknown
    #17
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #18
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #19
    cherylduvall said:

    Stage IV Uterine Cancer
    Hi, my mom was diagnosed with stage IV pappilary serous Uterine cancer a few weeks ago. They did a debulking surgery and gave her a poor prognosis. Her CA-125 was 1470 befor surgery and 914 after. My sisters and I knew we had to do more and began to research. We are doing a regime of natural treatments that include B17, Essiac tea and Agaricus mushroom as well as taking suppliments and eating whole foods and taking Cell Food. So far, she has had positive results. She starts chemo this week but is staying very positive. Her swelling has completely gone away as well as constipation. I would love to stay in touch. She is 63 and has been very active and healthy until this.

    This comment has been removed by the Moderator
  • cathyK
    cathyK Member Posts: 93
    #20
    california_artist said:

    lociee treatment at stage lV
    In a prior response on this thread--Cancer success story-- I mentioned an article from a surviror who had had debulking surgery-- "The surgeons were able to remove the three tumors from my liver with radio frequency ablation..." have you asked your doctor about this proceedure?

    It just devastates me that they offer you no hope. Wanna go out for coffee?

    My thoughts are with you both.

    Claudia

    lociee treatment at stage iv
    hello Claudia,
    doing much better with a much better doctor and team BIG TEAM from University of Michigan
    5 specialists and 100 students,
    no I have not discussed this, I will be going for a ct scan and mamogram on the 18th and ug a colonoscopy on the 24th so busy, but if no problems with ct , next exam is in January. so the long wait begins.
  • california_artist
    california_artist Member Posts: 816 Member
    #21
    cathyK said:

    lociee treatment at stage iv
    hello Claudia,
    doing much better with a much better doctor and team BIG TEAM from University of Michigan
    5 specialists and 100 students,
    no I have not discussed this, I will be going for a ct scan and mamogram on the 18th and ug a colonoscopy on the 24th so busy, but if no problems with ct , next exam is in January. so the long wait begins.

    Wonderfully hopeful news
    Cathy,

    Makes me smile when I hear that you have finally found some peace so you can deal with what's going on without the added stress of fighting you doctors for reasonable treatment.
    The thread I just posted, on New York Times talks very much about how a patient can get their best treatment. Although you now know that sometimes what it really takes is a caring team, which you have.

    Happy heart for you,

    Love,

    claudia

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