still kicking stage 4 b endometrial cancer

2

Comments

  • daisy366
    daisy366 Member Posts: 1,458 Member
    #22
    upsofloating said:

    So glad you are still
    So glad you are still 'kicking' it!!! I am also a Stage 4B UPSC survivor - diagnosis Dec 07//surgery/staging Jan 08, so hearing good news from a sister is soooo hopeful! Enjoy every day. Annie

    wannaknow and others
    congrats on the good news Annie and Cathy - I plan to join you soon (being NED).

    Re: staging and cancer you have. I think you doc is the person to answer that one.

    Mary Ann
  • num1gntfan
    num1gntfan Member Posts: 2
    #23
    Stage 4b
    Cathy,

    In Jan. 2010 I was diagnosed with uterine cancer stage 4b.
    My CA-125 was 130. and my oncologist ordered the surgery in late Feb.
    I had my uterus, ovaries, and omentum removed. It had spread that far.
    Cervix were clear.
    Thus far I had 3 chemo treatments of carbo/ taxol and handled them well.
    My last CA-125 reading was 16.
    I will be going through 28 treatments of radiation (starting this Monday)
    then 3 more chemo sessions.
    I have every intention of going into a LONG LONG remission. (Much longer than 5 years)
    My situation is kind of strange because I am only 39 years old.
    I have the oncologist and hemotologists baffeled.
    I will keep in touch and let you know how things are going.
    We will BOTH be long term survivors of this.....Just watch how we change those stupid stats!!!
    Feel free to e-mail me any time. Num1GNTfan@aol.com
    RoseAnn
  • Jniccoli21
    Jniccoli21 Member Posts: 3
    #24
    Stage 4 endometrial carcinoma
    Hello,
    Congrats on fighting on this horrible cancer. My mother is suffering badly. Her cancer has spread to her L5 and sarcrum. She is in a lot of pain. She has gone through radiation, hormonal therapy and chemo. Seemed nothing worked and she is going down hill. I wish I could change her pain. The doctor are giving up on her and say she has months left. Her legs are swollen, can hardly walk and is on heavy pain pills. I would like to know who and where you are treated? I would like to know what you are doing to fight this cancer? Please let me know. Jniccoli21@yahoo.com

    Thank you

    Jen
  • EABurns
    EABurns Member Posts: 1
    #25
    It's good to know someone else has heard of this rare cancer
    Diagnosed Nov 2009 with what my doctors tell me is a rare type of Endometrial Cancer called Serous Papillary Carcinoma. Had total abdominal hysterectomy with removal of ovaries, uterus, omentum, and part of colon. January 2010 had first round of Carbo and Taxol up through April and then told is wasn't affective becauste tumor showed no signs of shrinking so switched to Doxil in April and had 3 treatments of it through June and switched to Avastin which they now say is no working either and there is evidence of spots on my liver. I have had bouts of the usual nausea, vomitting, diahrea, pain, etc..... including, fluid buildup due to bowel obstruction caused by the tumor.
    The doctors seem to have given up and have pretty much told me that the only thing left to try is Gemzar so I'm scheduled for my first treatment 09/14/10 and pray that helps.

    I am very very scared and feel hopeless because the doctors seem to have given up.
    I'm looking for some suggestions for other cancer centers or procedures or chemo tha may be helpful that haven't been offered to me.

    Helplessly waiting a reply
    Ann
  • tears2overcome
    tears2overcome Member Posts: 98
    #26
    EABurns said:

    It's good to know someone else has heard of this rare cancer
    Diagnosed Nov 2009 with what my doctors tell me is a rare type of Endometrial Cancer called Serous Papillary Carcinoma. Had total abdominal hysterectomy with removal of ovaries, uterus, omentum, and part of colon. January 2010 had first round of Carbo and Taxol up through April and then told is wasn't affective becauste tumor showed no signs of shrinking so switched to Doxil in April and had 3 treatments of it through June and switched to Avastin which they now say is no working either and there is evidence of spots on my liver. I have had bouts of the usual nausea, vomitting, diahrea, pain, etc..... including, fluid buildup due to bowel obstruction caused by the tumor.
    The doctors seem to have given up and have pretty much told me that the only thing left to try is Gemzar so I'm scheduled for my first treatment 09/14/10 and pray that helps.

    I am very very scared and feel hopeless because the doctors seem to have given up.
    I'm looking for some suggestions for other cancer centers or procedures or chemo tha may be helpful that haven't been offered to me.

    Helplessly waiting a reply
    Ann

    I was diagnosed with uterine cancer
    Just before christmas 2009 i was given news I had uterine cancer, and never heard anything else, and didn't want to know.I had surgery January 4th, 2010, removed baby oven, ovaries etc, lymph nodes were fine, but was diagnosed with clear cell carcinoma stage4 even today not sure of grade, but sure it was bad. Was told this was aggressive cancer, and need to get surgery completed right away. Upon taking out my parts cancer was found in my appendix,and that was removed. I was told there was light dusting of cells left behind around stomach area, needed chemo. Feb I started chemo, 6 sessions every 3 weeks, carpo/toxil. My blood tests are not registering any CA markings at that time, blood has never shown any abnormalities throughout it all, so onc told me we have to rely on ct and petscans. After 4th session i had ct scan. Onc said looked good but wanted to finish my last 2 treatments. Pet scan showed a hot spot in my colon but everything else was looking good. Went for a colonoscopy and found 2 polopys one was inch that was verge of becoming colon cancer, as they tell me got it out should not worry. I ended up getting burnt from chemo on second treatment, allergic to nuelasta, and nueropathy. I had to build my white blood cells on my own, and the neuropathy is bad in one foot, left one. They say take time for me to get over. I am now going for my 3 month check up with onc at end of this month. I also have scar tissue in my colon that is painful and have been told it's from surgery, chemo and everything else. I will be talking to my onc about this at my visit end of september it's so painful at times.
    I have no family near me, and friends seem to have walked away on me......my soon to be ex husband hung in there and took me to appts and helped where needed. I thank god I am here, that i had the strength inside to fight this, I didnt' think I could, reality hit either I remain strong and fight or lay down and let it get to me.
    I never understood much about cancer until i got mine and I am still learning, but what I do remember is them telling me this is aggressive and need aggressive treatment to kill cells before it gets me.
    I am thankful for this site, and others who share thier strength....and tears as I have had many and still do at times. Bless you all for your posts and strength in making me a strong lady.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #27
    EABurns said:

    It's good to know someone else has heard of this rare cancer
    Diagnosed Nov 2009 with what my doctors tell me is a rare type of Endometrial Cancer called Serous Papillary Carcinoma. Had total abdominal hysterectomy with removal of ovaries, uterus, omentum, and part of colon. January 2010 had first round of Carbo and Taxol up through April and then told is wasn't affective becauste tumor showed no signs of shrinking so switched to Doxil in April and had 3 treatments of it through June and switched to Avastin which they now say is no working either and there is evidence of spots on my liver. I have had bouts of the usual nausea, vomitting, diahrea, pain, etc..... including, fluid buildup due to bowel obstruction caused by the tumor.
    The doctors seem to have given up and have pretty much told me that the only thing left to try is Gemzar so I'm scheduled for my first treatment 09/14/10 and pray that helps.

    I am very very scared and feel hopeless because the doctors seem to have given up.
    I'm looking for some suggestions for other cancer centers or procedures or chemo tha may be helpful that haven't been offered to me.

    Helplessly waiting a reply
    Ann

    Ann welcome to the site
    Sorry to hear of your diagnosis. Sorry that you are feeling helpless, also. You have been through so much already. Sorry that the drugs are not working for you. Since you just joined the site, you may not have read the posts from Connie and Diane about their treatments. Look under posts "Going for Gold" and the "I am scheduled for HIPEC" thread that Diane started. Do not know if these are possible treatments for you. Do not know what area you are currently getting your treatment. There are many sisters here all over the country on this site. You probably do want to get another opinion, and see what another doctor can offer you. Hope the Gemzar does work for you. In peace and caring.
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #28
    EABurns said:

    It's good to know someone else has heard of this rare cancer
    Diagnosed Nov 2009 with what my doctors tell me is a rare type of Endometrial Cancer called Serous Papillary Carcinoma. Had total abdominal hysterectomy with removal of ovaries, uterus, omentum, and part of colon. January 2010 had first round of Carbo and Taxol up through April and then told is wasn't affective becauste tumor showed no signs of shrinking so switched to Doxil in April and had 3 treatments of it through June and switched to Avastin which they now say is no working either and there is evidence of spots on my liver. I have had bouts of the usual nausea, vomitting, diahrea, pain, etc..... including, fluid buildup due to bowel obstruction caused by the tumor.
    The doctors seem to have given up and have pretty much told me that the only thing left to try is Gemzar so I'm scheduled for my first treatment 09/14/10 and pray that helps.

    I am very very scared and feel hopeless because the doctors seem to have given up.
    I'm looking for some suggestions for other cancer centers or procedures or chemo tha may be helpful that haven't been offered to me.

    Helplessly waiting a reply
    Ann

    ann

    i'm sorry to hear what you've been going through. i, too, have upsc, as do a number of women on this site. linda, who has upsc, is going to philadelphia to be in a trial of a new drug, and there are trials all over the country. where are you? i haven't looked yet myself, but i think you can google clinical trials plus whatever universities, cancer research centers hospitals that are in your area. hopefully, however, gemzar will work. i would probably look for another doctor, if you really feel s/he has given up on you. i hope that's possible. just don't give up on yourself, ann. ( you might also ask your doctors if they have knowledge of any clinical trials in your area.)

    thinking of you, and hoping for the best possible results for you. keep us posted.

    sisterhood,
    maggie
  • CW1162
    CW1162 Member Posts: 1
    #29
    4B and still kickin after 1 year
    Cathy,
    I was diagnosed with 4B stage 2 Endometrial cancer in September 2009, Cancer has spread to the lungs and the lymph nodes. Had a complete hysterctomy in November and everything removed cancer was also in the ovaries and attached to the bladder. As of today I am on my 12th Carbo/Taxol treatment and cancer while not going away is staying stable. Have had highs and lows and was considering quitting treatments because I don't want stable I want a cure, told it is not curable because it is in the lungs. I have a daughter that doesn't graduate from High School until 2013 and I plan on being there.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #30
    CW1162 said:

    4B and still kickin after 1 year
    Cathy,
    I was diagnosed with 4B stage 2 Endometrial cancer in September 2009, Cancer has spread to the lungs and the lymph nodes. Had a complete hysterctomy in November and everything removed cancer was also in the ovaries and attached to the bladder. As of today I am on my 12th Carbo/Taxol treatment and cancer while not going away is staying stable. Have had highs and lows and was considering quitting treatments because I don't want stable I want a cure, told it is not curable because it is in the lungs. I have a daughter that doesn't graduate from High School until 2013 and I plan on being there.

    Ann
    I agree with Maggie's comments totally. I am a UPSC sister fighting recurrence too. You named all the chemos my doc mentioned. I hope the Gemzar is the golden ring for you. You are in my prayers.

    Mary Ann
  • sitchy57
    sitchy57 Member Posts: 27
    #31
    cathyK said:

    still kicking stage 4 b endometrial cancer
    ok update, just had a CT and visit with gyn/onc, results for Ct
    NO evidence of metastatic disease detected
    3 cm cystic collection decreased from the previous exam
    negative CT of the chest
    this is 6 months 20 days after last chemo. this is how my Doc is timing it.
    I am jumping up and down and booking fests as we speak.
    hope this helps others with stage 4 b grade 3 endometrial adenocarcinoma/papillary
    off to thinking about next visit in 3 months and more good news!
    Cathy

    Michigan here also
    Cathy I have been diagnoised with endometrial cancer and will find out the stage this next Wed. the 22nd. I have been doctoring in Grand Rapids Mi. with a gyn-onc. I just had the hyst on Sept. 8th so I am still recovering. I will try to keep you posted as to what stage my cancer is and what treatment I will be having.
  • cathyK
    cathyK Member Posts: 93
    #32
    still kicking stage 4 b endometrial cancer
    hello all , praying everyone is doing well, or better than yesterday and the day before. I have been counting the days till my oncologist visit next week, still at every 3 months, I have been cancer free since nov 1, 09 (last chemo) so almost 2 years. feeling great other than aches and pains from other things, like arthritis in foot, and torn something in shoulder, not rotator cuff but worse and waiting on a specialist to sew me back up, 3 month waiting.
    thought Id tell everyone still kicking :)) got a great oncologist in grand rapids , wish I had him at the beginning of this wild ride. how is everyone else doing with stage 4 B ? this was the one thing I looked for when I went on line, is someone , ANYONE who has been cancer free with stage 4 B endometrial cancer.
    lets get the roll call going, stage 4 b stand up and yell Im ALIVE and WELL!! cancer cant get me ! im a fighter!

    Cathy K
  • cathyK
    cathyK Member Posts: 93
    #33
    sitchy57 said:

    Michigan here also
    Cathy I have been diagnoised with endometrial cancer and will find out the stage this next Wed. the 22nd. I have been doctoring in Grand Rapids Mi. with a gyn-onc. I just had the hyst on Sept. 8th so I am still recovering. I will try to keep you posted as to what stage my cancer is and what treatment I will be having.

    michigan here also
    hey sitchy57 you say your doc is in Grand Rapids, might he be Dr Downey?? that is my new and last oncologist , been through 2 before him and he is fantastic. very caring and attentive to everything when I go for my visits.
    my e mail is showyourfaith@yahoo.com give a shout when you are around
    cathy k
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #34
    cathyK said:

    still kicking stage 4 b endometrial cancer
    hello all , praying everyone is doing well, or better than yesterday and the day before. I have been counting the days till my oncologist visit next week, still at every 3 months, I have been cancer free since nov 1, 09 (last chemo) so almost 2 years. feeling great other than aches and pains from other things, like arthritis in foot, and torn something in shoulder, not rotator cuff but worse and waiting on a specialist to sew me back up, 3 month waiting.
    thought Id tell everyone still kicking :)) got a great oncologist in grand rapids , wish I had him at the beginning of this wild ride. how is everyone else doing with stage 4 B ? this was the one thing I looked for when I went on line, is someone , ANYONE who has been cancer free with stage 4 B endometrial cancer.
    lets get the roll call going, stage 4 b stand up and yell Im ALIVE and WELL!! cancer cant get me ! im a fighter!

    Cathy K

    CATHY! Wonderful 2 year remission TO DATE!! Congrats! WOW!
    You give hope to all the Stage 4 cancer babes out here! Seems the secret to surviving a long time is to get a LONG multi-year remission like yours, so that even if you eventually recur, you can go back on 1st line chemo drugs that are apt to thrust you once agan into ANOTHER long remission!

    Unfortunately my cancer didn't take that optimal path, but I am certainly encouraged that YOURS has!!
  • Rewriter
    Rewriter Member Posts: 493 Member
    #35
    cathyK said:

    still kicking stage 4 b endometrial cancer
    hello all , praying everyone is doing well, or better than yesterday and the day before. I have been counting the days till my oncologist visit next week, still at every 3 months, I have been cancer free since nov 1, 09 (last chemo) so almost 2 years. feeling great other than aches and pains from other things, like arthritis in foot, and torn something in shoulder, not rotator cuff but worse and waiting on a specialist to sew me back up, 3 month waiting.
    thought Id tell everyone still kicking :)) got a great oncologist in grand rapids , wish I had him at the beginning of this wild ride. how is everyone else doing with stage 4 B ? this was the one thing I looked for when I went on line, is someone , ANYONE who has been cancer free with stage 4 B endometrial cancer.
    lets get the roll call going, stage 4 b stand up and yell Im ALIVE and WELL!! cancer cant get me ! im a fighter!

    Cathy K

    You're WELL, Cathy
    I'm so thrilled for you that you are cancer free. May it always be so!

    Jill
  • cathyK
    cathyK Member Posts: 93
    #36
    lindaprocopio said:

    CATHY! Wonderful 2 year remission TO DATE!! Congrats! WOW!
    You give hope to all the Stage 4 cancer babes out here! Seems the secret to surviving a long time is to get a LONG multi-year remission like yours, so that even if you eventually recur, you can go back on 1st line chemo drugs that are apt to thrust you once agan into ANOTHER long remission!

    Unfortunately my cancer didn't take that optimal path, but I am certainly encouraged that YOURS has!!

    hey Linda sorry to hear your cancer came back, my doc has said to me many times, if and that is a big IF it recurs he has a lot of tricks up his sleeve, he has one lady that has seen him for 10 years, of that 10 years she has had recurrence 4 times operate, chemo , radiation, a few months of yuck and then a few years of YEAA so that is encouraging. when my first doc (which i fired) kept reminding me I would be dead in 1 to 2 years guaranteed, and when the cancer comes back he has nothing to stop it, hmmmmm, and he has been a specialist for 20 years, not good, my doc has heard of the other doc all bad things, he acutally has a few patients now that were patients of my first doc :0
    praying for ya, cancer free is in your future !
    cathy k
  • kkstef
    kkstef Member Posts: 688 Member
    #37
    cathyK said:

    still kicking stage 4 b endometrial cancer
    hello all , praying everyone is doing well, or better than yesterday and the day before. I have been counting the days till my oncologist visit next week, still at every 3 months, I have been cancer free since nov 1, 09 (last chemo) so almost 2 years. feeling great other than aches and pains from other things, like arthritis in foot, and torn something in shoulder, not rotator cuff but worse and waiting on a specialist to sew me back up, 3 month waiting.
    thought Id tell everyone still kicking :)) got a great oncologist in grand rapids , wish I had him at the beginning of this wild ride. how is everyone else doing with stage 4 B ? this was the one thing I looked for when I went on line, is someone , ANYONE who has been cancer free with stage 4 B endometrial cancer.
    lets get the roll call going, stage 4 b stand up and yell Im ALIVE and WELL!! cancer cant get me ! im a fighter!

    Cathy K

    Great news, Cathy!
    Cathy....what wonderful news! I am so happy to hear that you are doing so well. I well remember your earlier posts when you struggling with such a jerk of a doctor. SO great that you have found a smart, caring physician. That makes such a huge difference!

    Keep dancing NED and shouting "I'M ALIVE AND WELL!"

    Big Hugs!

    Karen
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #38
    kkstef said:

    Great news, Cathy!
    Cathy....what wonderful news! I am so happy to hear that you are doing so well. I well remember your earlier posts when you struggling with such a jerk of a doctor. SO great that you have found a smart, caring physician. That makes such a huge difference!

    Keep dancing NED and shouting "I'M ALIVE AND WELL!"

    Big Hugs!

    Karen

    Soo good
    to hear you're still doing well, Cathy. I'm so happy to hear you've found an oncologist with lots of tricks still up his sleeve. I always remember the words of my breast cancer medical oncologist. She says when people learn what she does for a living and seem sympathic, she tells them her job is joyful - she gets to actually cure people! I never viewed it from that perspective, always thought it would be such a difficult job to watch patients succumb and feel helpless. I'm sure the job satisfaction level amongst oncology docs is improving as treatment options are improving. So happy yours is one of the positive oncologists and you're doing well.

    Suzanne
  • upsofloating
    upsofloating Member Posts: 466 Member
    #39
    cathyK said:

    still kicking stage 4 b endometrial cancer
    hello all , praying everyone is doing well, or better than yesterday and the day before. I have been counting the days till my oncologist visit next week, still at every 3 months, I have been cancer free since nov 1, 09 (last chemo) so almost 2 years. feeling great other than aches and pains from other things, like arthritis in foot, and torn something in shoulder, not rotator cuff but worse and waiting on a specialist to sew me back up, 3 month waiting.
    thought Id tell everyone still kicking :)) got a great oncologist in grand rapids , wish I had him at the beginning of this wild ride. how is everyone else doing with stage 4 B ? this was the one thing I looked for when I went on line, is someone , ANYONE who has been cancer free with stage 4 B endometrial cancer.
    lets get the roll call going, stage 4 b stand up and yell Im ALIVE and WELL!! cancer cant get me ! im a fighter!

    Cathy K

    Great news that you are
    Great news that you are still NED! Hope this continues for many years.
    Annie
  • RoseyR
    RoseyR Member Posts: 471 Member
    #40
    wannaknow said:

    can someone please answere this?
    Hi all...I just had surgery on the 22nd of March..onco/gyno said my cancer "started" in the uterus then went down to my cervix then went up to my ovaries and 2 lymph nodes..he could only remove my ovaries and tubes and the 2 lymph nodes. I have to have carbo/taxol starting this friday..(April 16th)...he said its the type of cancer that normally starts in the ovaries..papillary serous carcinoma ..of the UTERUS. soooo do i say i have uterine cancer or ovarian? also..he told my family its stage 4. but also said he doesnt put stock in staging. hmmm could that be a good thing or bad? ...anyway ..the plan is he wants the chemo to shrink the tumor in my uterus/cervix so he can remove them..said after my 3rd treatment he will do a cat scan..if it did..which he gave me a 75% chance that it will ..then after surgery 3 more chemo treatments. so my question..is it uterine or ovarian cancer??? Thanks everyone! Much love, Kim

    Advice re Carbo/Taxol

    Kim,

    Can't asnwer your question about uterine versus ovarian cancer, but if you're soon starting taxol and carboplatin, you might find some help re diet and supplements from my latest responses on our discussion board. Look under "new recipes" and "what to eat during chemo."

    Rosey
  • deekat
    deekat Member Posts: 5
    #41
    Always Hopeful said:

    I, too, had surgery on March 22nd
    Hi Kim,
    My surgery and subsequent pathology reports found that the tumor remained in my endometrial lining, all of the other gyne organs were clear of cancer, my lymph nodes were also clear. However, two "dots" were found on my colon and scraped off. The diagnosis was Uterine Papillary Serous Carcinoma. As explained to me, it is a very aggressive type that doesn't follow the rules of other uterine cancer cells but is more like ovarian cancer. The treatment, then, is like the treatment for ovarian cancer. I, too, am on the Carbo/Taxol regimin for 6 cycles, total of 18 weeks. I receive taxol EVERY week and the carbo every third week. As I explained in other postings, my medical/chemo onc gave me the option after stating that Taxol each week has been found to be more effective in treating the cancer and regarding reaction problems. So far so good. I just started my 2nd cycle on May 19th.

    I am so sorry to hear that additional surgery is still ahead of you. Thankfully, that was not my situation since the radical hysterectomy was able to be done initially. I know it's easy for me to say "Hang in There" but that's the only thing you can do now, in addition to being sure you stay as positive as possible. Hopefully, your support system is sending out much postive energy to you. It is so very important!

    There are other postings specific to Uterine Papillary Serous Carcinoma on this discussion board. Have you found and read them? They are so chock full of information that helps soothe your mind...the sharings are supportive. I highly suggest you scroll through and famiiarize yourself, as I have been doing. I'm confident that you will find so much information and insight for what you "wannaknow", Kim.

    The best thing to know is that we are not alone...sad to say.

    Peace and hope,

    JJ

    Newbir-diagnosis question-same?
    Hi Kim,

    I was diagnosed with endometrial cancer-had a complete hysterectomoy on 5/27- (Da Vinci Robot). That went fine but doc found teeny tiny spot on my colon. One piece showed no cancer the other did. He did not mention UPSC? to me. I am set to start the every 3 weeks-6 rounds of chemo the first week in July with the Carbo/Taxol. I am not sure what to expect. I guess I should be asking my doc this (I will-but you know you are in such a state that you forget to ask a lot of stuff)- do they then do an entire body scan to make sure there is no cancer left anywhere? He did not mention that to me yet.
    Anyone know the chances of recurrance?

    Bless you-good luck-thanks for listening.

    Dee

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