still kicking stage 4 b endometrial cancer

cathyK
cathyK Member Posts: 93
edited March 2014 in Uterine/Endometrial Cancer #1
well I have been peeking around reading posts but not posting much at all, heres an update,
for those looking for survivors of stage 4 b endometrial cancer , as I could not find many at all when i started out looking
I dont concider myself a survivor yet, till i get to 5 years, then I think I can breath again
I am now at 5 month after last treatment and doc visit came up with
clear ultrasound, other than the cyst , which they now think is just liquid and not cancer. doc said I am in remission. with the knowledge that no one that has been treated with stage 4 b endometrial cancer at U of M has lived past 5 years, YET, guess I have to be the first one to do that :)
She is not sure the Ca125 is a good marker as my last doc did not take a ca 125 before operation, he thought ca 125 is not useful in any cancer markers, so now not sure, ca 125 was as high as 44 (taken by accident by his nurse) and low now as 9.5 so wish there were other innexpensive non evasive tests that are good cancer markers .
hopes are high at times and very low at others but mostly even .

so if there is anyone out there I have stage 4 b grade 3 endometrial carcinoma. and still kickin,
got lots to deal with , weight, finances, energy, neuropothy and the abdomen pain, (which has been linked to muscle pain)
working it out day by day. got a great doc at U of M who is encouraging. and figured out the stinkin medicade rules and regs.
Instead of getting tests at hospitals near me and hoping they do exactly what my doc wants , I just get all my tests done at U of M when I have my doc visit , makes for a VERY long day but get the tests done and read by my doc and not by some stranger at which ever hospital the hmo wants me to go to.
it has been a hell ride with Molina and medicade but thank God I have that on my side or I would never have been able to pay for any of the care i am getting ,
really wish the gov would get it together and pas a WORKABLE bill on health care, Obama had the right idea AT FIRST when he said he wanted to mirror Canada's heath care, then all hell broke loose in the parliment , then the bill got worse and worse and worse,
heres hoping .
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Comments

  • california_artist
    california_artist Member Posts: 816 Member
    #2
    Cathy
    Just popped in for a minute and was thrilled to see you are hanging in there. So pleased to hear that the doctors at the UM took the time to figure out how you could best get your care.

    I had been just moping around, as my truck wouldn't allow me to go faster than 25mph without threats of things falling off. My son is here from Germany, and fixed my sporting twenty-rive year old Mazda RX-7 in less than twenty minutes. Now, for the first time in two years, I can go farther than two or three miles and plan on taking some road trips with my granddaugher.

    She has traveled with my more than once back and forth across the coutry. The very first thing she said to me when she saw the car was running was "ROAD TRIP, YIPPIE"

    One of my favorite things to do is just to get in the car with a few things and start driving, looking at all that's outside of my little apartment. I hope the joy will creep back in again.

    Again, thinking of you and the other here who make my heart glad I've gotten to know them.

    Love and great big hugs and kisses to you all,

    Claudia
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #3
    Cathy
    So glad to see you are making progress dealing with the system...so happy to hear you are in remission!!


    Claudia, nice to see you doing so well as well!!



    Laurie
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #4
    TiggersDoBounce said:

    Cathy
    So glad to see you are making progress dealing with the system...so happy to hear you are in remission!!


    Claudia, nice to see you doing so well as well!!



    Laurie

    Cathy and Claudia
    Cathy,

    I'm SO HAPPY FOR YOU. I remember all the angst and bad treatment you endured. It is wonderful that you have a great doc and have been able to maneuver the Medicaid system - not a small accomplishment.

    You seem in great spirits and YES you will not be a statistic like you have already proven. I will continue to pray for you on this journey. The course that you are on seems to be working for you.

    And Dear Claudia, It's so nice to hear from you again. Glad you are getting wheels again - put Florida on your list of places to cruise to!!!! I see my doc on Friday the 2nd - keep your fingers crossed. Are you still tuning in at 8pm???

    With warm regards and many blessings, Mary Ann
  • kathybd
    kathybd Member Posts: 126
    #5
    Great attitude and positive thinking go a very long way!
    Cathy
    You certainly inspire me with your fortitude. Are you at U of Michigan in Ann Arbor or U of Minnesota in Mpls? Sounds like you have a great Doc...a keeper for sure.
    Prayers and best wishes for a long, healthy, happy life!
    Kathy
  • wannaknow
    wannaknow Member Posts: 12
    #6
    kathybd said:

    Great attitude and positive thinking go a very long way!
    Cathy
    You certainly inspire me with your fortitude. Are you at U of Michigan in Ann Arbor or U of Minnesota in Mpls? Sounds like you have a great Doc...a keeper for sure.
    Prayers and best wishes for a long, healthy, happy life!
    Kathy

    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
  • cathyK
    cathyK Member Posts: 93
    #7
    kathybd said:

    Great attitude and positive thinking go a very long way!
    Cathy
    You certainly inspire me with your fortitude. Are you at U of Michigan in Ann Arbor or U of Minnesota in Mpls? Sounds like you have a great Doc...a keeper for sure.
    Prayers and best wishes for a long, healthy, happy life!
    Kathy

    Great attitude and positive thinking go a very long way!
    it is u of michigan as I live 3 1/2 hr north of there
    thanks for the well wishes, prayin
  • snowy1158
    snowy1158 Member Posts: 4
    #8
    Cathyk
    Hi Cathyk! First of all Congrats on your good news!!! I am so glad to find someone who has stage 4 cancer and is surviving!! That gives me some HOPE. I was diagnosed 4/5/06 after my complete hysterectomy with stage 3B endometrial cancer. My surgeon she got all she could find but suggested I have chemo as a precautionary measure. I found a gynocologist/oncologist and started chemo in 6/2006. I had 6 treatments of carbo/taxol. I had my treatments once every 3 weeks. The side effects were a little rough...but I made it through and by the time I was finished in October my markers were down to like 18. I was thrilled but my doctor didnt seem to be as glad as i was. He said I still had to be checked every 3 months. The next year..10 months to be exact...my cancer had metastasized to my lungs. Time for more chemo...my markers werent real high...like 50. I just had 3 rounds of cisplatin alone, but had an allergic reaction on my very last trreatment. No more platinum drugs for me the doc said. He did tell me the nodules on my lungs were very very small and growing so slowly, another thing that made me feel good. In 2009 on a checkup with him, he told me the strangest thing that really shocked me. He said he couldnt understand why this cancer hadnt killed me yet...he said I should have died a year and a half ago. I told him maybe it was my FAITH in GOD, and yes, even my faith in him (my doctor. I am now in stage 4, and it scares me. I am not ready to die Cathy. I just did my 2nd treatment yesterday of doxirubicin (hope I spelled that right). I was told several years ago that most stage 4 dont make it...I dont want to be that statistic. YOU GIVE ME TO THE HOPE AND STRENGTH TO GO ON!!! GOD BLESS YOU AND THANK YOU SO MUCH!!! I wish all the best for you and everyone else who is fighting cancer.
  • clscurnutt
    clscurnutt Member Posts: 26
    #9
    snowy1158 said:

    Cathyk
    Hi Cathyk! First of all Congrats on your good news!!! I am so glad to find someone who has stage 4 cancer and is surviving!! That gives me some HOPE. I was diagnosed 4/5/06 after my complete hysterectomy with stage 3B endometrial cancer. My surgeon she got all she could find but suggested I have chemo as a precautionary measure. I found a gynocologist/oncologist and started chemo in 6/2006. I had 6 treatments of carbo/taxol. I had my treatments once every 3 weeks. The side effects were a little rough...but I made it through and by the time I was finished in October my markers were down to like 18. I was thrilled but my doctor didnt seem to be as glad as i was. He said I still had to be checked every 3 months. The next year..10 months to be exact...my cancer had metastasized to my lungs. Time for more chemo...my markers werent real high...like 50. I just had 3 rounds of cisplatin alone, but had an allergic reaction on my very last trreatment. No more platinum drugs for me the doc said. He did tell me the nodules on my lungs were very very small and growing so slowly, another thing that made me feel good. In 2009 on a checkup with him, he told me the strangest thing that really shocked me. He said he couldnt understand why this cancer hadnt killed me yet...he said I should have died a year and a half ago. I told him maybe it was my FAITH in GOD, and yes, even my faith in him (my doctor. I am now in stage 4, and it scares me. I am not ready to die Cathy. I just did my 2nd treatment yesterday of doxirubicin (hope I spelled that right). I was told several years ago that most stage 4 dont make it...I dont want to be that statistic. YOU GIVE ME TO THE HOPE AND STRENGTH TO GO ON!!! GOD BLESS YOU AND THANK YOU SO MUCH!!! I wish all the best for you and everyone else who is fighting cancer.

    Good Wishes
    Besides your faith in god, faith in your doctor is so critical. Keep on fighting and please continue to let us know your progress. I'm finding it more wonderful each day to come to this site and see how others are doing. I don't feel so alone in this struggle. I have great family to support me, but it still can get me down. Never give up! Never surrender!
  • snowy1158
    snowy1158 Member Posts: 4
    #10
    clscurnutt said:

    Good Wishes
    Besides your faith in god, faith in your doctor is so critical. Keep on fighting and please continue to let us know your progress. I'm finding it more wonderful each day to come to this site and see how others are doing. I don't feel so alone in this struggle. I have great family to support me, but it still can get me down. Never give up! Never surrender!

    never give up!
    Thank you for the encouraging words..."never Give Up and Never Surrender"! There have been a lot of times over the past 4 years that I have wondered if I should stop treatment...but I kept on going. I wont lie, it has been really depressing at times and I dont want to cry in front of others so I do that when I am alone at home. None of my family lives close to me, so that is a little hard too....there is just my boyfriend to support me. He is so wonderful at times, but other times he doesnt understand what I am going through. I live in a very small town so there are no support groups...that is why I am thankful for this website and all the wonderful and encouraging information I have read here. I wish you the best and hope you continue to do great!! I will let everyone know how I am doing as I continue this fight! God Bless!
  • cathyK
    cathyK Member Posts: 93
    #11
    snowy1158 said:

    never give up!
    Thank you for the encouraging words..."never Give Up and Never Surrender"! There have been a lot of times over the past 4 years that I have wondered if I should stop treatment...but I kept on going. I wont lie, it has been really depressing at times and I dont want to cry in front of others so I do that when I am alone at home. None of my family lives close to me, so that is a little hard too....there is just my boyfriend to support me. He is so wonderful at times, but other times he doesnt understand what I am going through. I live in a very small town so there are no support groups...that is why I am thankful for this website and all the wonderful and encouraging information I have read here. I wish you the best and hope you continue to do great!! I will let everyone know how I am doing as I continue this fight! God Bless!

    same same
    well snowy I also live in a small town , no support groups , my first doc was 2 hr away new one is 3 1/2 hr away.
    no family or friends near and ni boyfriend, I am also thankful for the newsgroup . as here I see many results to treatment, I keep hearing from my friends, "this friend died, or that friend is having serious complications with cancer , and gets me down" here I see results good and bad and this is much better .
    thanks all for posting , and hope that everyone keeps posting after treatiment , to encourage others, as I have looked and looked when i was first diagnosed with stage 4 b grade 3 endometrial cancer I could find NO one who had lived more than 2 years with this diagnosis, thanks everyone !
    cathy
  • nempark
    nempark Member Posts: 681
    #12
    Hi cathy:
    I was diagnosed with stage 1A endo cancer and had a total hysterectomy in November 2009. cancer did not spread. Had six sessions of chemo. first scan after chemo was good. chest xray was good. doc says I am in remission. what I want to know is since I have had everything out and doc says everything was good why do I have to continue going for checkup and scans every two months. You are doing great hang in there and be positive you can do it we are all going to do it. Jaa
  • kansasgal
    kansasgal Member Posts: 122 Member
    #13
    nempark said:

    Hi cathy:
    I was diagnosed with stage 1A endo cancer and had a total hysterectomy in November 2009. cancer did not spread. Had six sessions of chemo. first scan after chemo was good. chest xray was good. doc says I am in remission. what I want to know is since I have had everything out and doc says everything was good why do I have to continue going for checkup and scans every two months. You are doing great hang in there and be positive you can do it we are all going to do it. Jaa

    Why checkup and scans after chemo and clean CT
    Hi, nempark!

    Perhaps although your endometrial cancer was found at an early stage (1A) it is a grade 2 or 3 cancer rather than a grade 1. Review your pathology report issued following your hysterectomy to see if there is information about the grade or perhaps the type (I or II). Call your oncologist's office and ask your question. Someone should return your call with the answer to your question concerning ongoing checkups.

    Following my hysterectomy in the late spring of 2009 I was diagnosed with stage 1A grade 3 serous endometrial cancer plus stage 1B grade 2 endometrial cancer. The nine lymph nodes removed and the pelvic cavity wash were all all "clean". Like you I also had six sessions of chemo (carbo/taxol). In addition I had three rounds of vaginal brachytherapy radiation. My treatment beyond the hysterectomy was due to the stage 1A grade 3 endometrial cancer. On this discussion board I identify my cancer as Stage 1A UPSC (uterine papillary serous carcinoma). My gyn/oncologist calls it "very aggressive and highly recurrent". If I had only been diagnosed with the stage 1B grade 2 endometrial cancer, my gyn/onc would have recommended no further treatment beyond the hysterectomy.

    My first checkups were at 2-month intervals. With my recent CT showing NED (no evidence of disease) I have "graduated" to checkups at 4-month intervals.

    I am a person who likes to know what is going on as much as possible. I hope your question is answered soon!

    Sally
  • kathybd
    kathybd Member Posts: 126
    #14
    cathyK said:

    Great attitude and positive thinking go a very long way!
    it is u of michigan as I live 3 1/2 hr north of there
    thanks for the well wishes, prayin

    What town are you in...is it in the UP?
    My nephew is doing research there and my brother in law used to run the med school. You are definitely in good hands. Love your positive attitude. It goes a long way.
    Take good care!
    Kathy
  • cathyK
    cathyK Member Posts: 93
    #15
    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
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #16
    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

    Cathy so glad to hear your great news
    May you continue to kick for a very long time. Celebrate your good news. I am so happy for you. In peace and caring.
  • Always Hopeful
    Always Hopeful Member Posts: 234
    #17
    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

    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
  • norma2
    norma2 Member Posts: 479
    #18
    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

    {{Cathy}}} Sooo glad for your good news!!
    I think the cancer statistics are over-rated. I know clinically they have to use statistics to gauge the effectiveness of treatments. Statistics, however, are at times skewed because they do not account for the tenacity of the human spirit.

    Also the statistics are ones that are 5 yrs old. Remember they are using a 5 yr rule as to survival. Well, 5 yrs ago they did not use some of the methods, treatments, and protocols that they use today. So we are the 5 yr people for the future. Looking back in time 25 yrs. we would have had a more dismal future. Now with the chemo, treatments, surgeries, and non-traditional approaches to cancer our future is much better. And I truly believe with the advances being made in cancer cure there will be even better and more effective ways just a little down the road.

    I am celebrating with you on your good news. Norma
  • lovingmylife
    lovingmylife Member Posts: 6
    #19
    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

    So glad to hear
    Cathy, I had surgery for stage IV uterine cancer March of 2009. I had 6 rounds of chemo which was complete in July 2009. All my tests have come back negative so far and my next appointment early July 2010 which will be one year mark. I am thrilled to hear of how you are doing and rejoice with you. I am almost a year out and have decided to keep my port until next July at least.
    I also live in a very small town with no support group and have to travel an hour to my gyn/onc. Please keep us updated as you continue your journey as I love to read and can feel the energy you have for life.
    God Bless!
  • clscurnutt
    clscurnutt Member Posts: 26
    #20
    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

    Hooray, Cathy!
    What great news! I'll jump up and down with you.
  • upsofloating
    upsofloating Member Posts: 466 Member
    #21
    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

    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

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