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That time again!

debrajo
debrajo Member Posts: 1,095

Since I've been back, I have been missing some faces.  Time for another "Roll Call"!  This time for everyone on all the "Below the Belt Cancers" and anyone just trolling the posts.  I am "here" and know of one "oldtimer " who is quite well...about 6 years now.  I am 5 1/2 years out of chemo and still NED, thank God!  If you know of anyone who is ok, but had rather not be mentioned, just say "and another survivor"  Love, Debra

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Comments

  • joannewtta
    joannewtta Member Posts: 43
    Roll Call

    Stage 3. 3c UPSC. Two years three months NED. Feeling great if we don't call spinal stenosis and degenerative disc desease a pain. Literally. Cortisone shot next week. Hope it does something. My husband is also dancing with NED so we can do the happy dance together.

    Joanne

  • Soup52
    Soup52 Member Posts: 905
    edited May 2016 #3
    Still in treatment. Praying

    Still in treatment. Praying for NED.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    I'm here. Dancing with NED.

    I'm here. Dancing with NED. Living life every day.

  • DebiR
    DebiR Member Posts: 38
    edited May 2016 #5
    Stage 3A UPSC.  My

    Stage 3A UPSC.  My hysterectomy was almost 2 years ago on 5/19/14.  I have a CT scan coming up at the end of May.  Praying for continued NED.

    Debi

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    edited May 2016 #6
    Eldri here - diagnosed in

    Eldri here - diagnosed in August 2015 - UPSC, Stage II, total hysterectomy, three chemos and NED since surgery on September 30, 2015 which was seven months yesterday!!  I'm still dealing with some side effects of the chemo but feeling better everyday and my physical therapist agrees. 

    i also made contact with "shortmarge" who was diagnosed with UPSC in September 2008 and after 7 1/2 years she's stll has NED and told me I could post the good news here.

    Love, 

    Eldri

  • Kvdyson
    Kvdyson Member Posts: 789
    Still in Frontline

    I am here, too. Still in frontline treatment. Diagnosed & surgery in Sept 2015. Uterine carcinosarcoma, Stage 1b, Grade 3. Hoping for NED.

  • namedropper
    namedropper Member Posts: 102
    Roll Call

    MMMT stage 2 grade 3 NED 18 months. Waiting for another CA 125 blood test since my  numbers doubled in the last month and they were always low.. If the go up again I will have to get another set of CT scans.  They want me to have neck surgery but I want to wait until I know for sure what is going on.   All of you are so nice and helpful.    Stay strong.  Sue

  • debrajo
    debrajo Member Posts: 1,095
    Roll

    So glad to see you all here!  Thanks Eldri for info on Shortmarge!  I have heard from another "old timer"( almost 7 years) who is doing fine!

  • debrajo
    debrajo Member Posts: 1,095
    Roll Call

    Forgot to mention I was diagnosed July 2009 with UPSC 1a, grade 3.  Ned since May of 2010

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    I also connected with Fayard

    I also connected with Fayard (Luisa) and she's five years NED - I love hearing these success stories!!!

    Love,

    Eldri

  • Ardnasnit
    Ardnasnit Member Posts: 29
    I am still around

    I was diagnosed in May 2014. After total hysterectomy was told I was Grade 2, Stage 1a. I had 6 rounds of Taxol/Carbo and 3 Brachytherapy. I have been NED since November 2014.

    I don't post often but read posts everyday. I have learned so much from all of you. Thanks for being there when I needed it.

  • brissance
    brissance Member Posts: 192
    edited May 2016 #13
    Introduction to Group

    Hi,

    New to this site and this world...  you guys are the first breath of fresh air and I thank you.  I was diagnosed in Dec, hysto in Feb. DX was Stage 1A/grade 3 UPCS (hope I said that reasonably intelligently).  I have had 2 chemos.. sort of.  I was suppose to to have platinum and taxol.  I was hypersensitive to taxol and only had platinum for first two.  I was suppose to have Platinum and Taxotere last week but white count down so will try again this week.  Sure hope no hypersensitvity on this go.  When I finish this chemo I have several weeks then go thru 25 external radiation treatment and the 3 day of the internal one...   then 3 more chemos.  I am feeling great and have a tremendous faith that all will turn out as it should and I will be able to deal with the future and enjoy the path as I go along it..  (sounds corny...   but I am going to give it one heck of a try!)

     

    Patty :)

     

     

  • pinkuke
    pinkuke Member Posts: 5
    edited May 2016 #14
    Roll call

    I am new to this group, diagnosed 1 month ago with Adenocarcinoma, stage 1A grade 3. Healing from surgery phase now. Hope to learn lots from all you wonderful and experienced survivors! 

  • debrajo
    debrajo Member Posts: 1,095
    Roll

    Hi Brissance and pinkuke and welcome to the boards!  You will get lots of helf, information, understanding, and love form this group!  Ask anything you want...nothing is out of bounds.  We even have a few sweet guys on here!  Patty, you are the same as me, 1a, grade3 UPSC.  I had the standard six treatments of Taxol/Carboplatin and five internal radiations   That was in '09-10 and I am still here.  Looking forward to hearing from you in the future!  Best, Debrajo

  • Moped7946
    Moped7946 Member Posts: 40
    NED

    who or WHAT is NED?

     

  • debrajo
    debrajo Member Posts: 1,095
    edited May 2016 #17
    Moped7946 said:

    NED

    who or WHAT is NED?

     

    Sorry! LOL!

    NO Evidence of Disease.....N.E.D.  Been doing this so long I forgot!  Welcome to the boards!  Best, Debrajo

  • Sandy3185
    Sandy3185 Member Posts: 228
    edited May 2016 #18
    2 years NED

    Surgery 12/05/13, chemo completed April 2014. I have never been a great dancer, but dancing with NED is the greatest!

  • Kathy G.
    Kathy G. Member Posts: 235 **
    Hi!

    Hi!

    Stage 1a - grade 1 in November 2012.

    Hysterectomy only in 1/13.

    Cleared my 3 year appointment this past January.

    God is good!

    Prayers for all of you battling this very scary beast. I have nothing but the upmost respect for you!

  • artist49
    artist49 Member Posts: 87
    Roll Call

    Still here. Diagnosed UPSC grade 3 stage 4B (extensive lymph node involvement)

    in September 2010. NED since middle of treatment Jan. 2011. Cat scan in June

    will reveal if  my good fortune continues.

  • pinky104
    pinky104 Member Posts: 574
    Another IVb survivor

    Had surgery May, 2010 for UPSC (adenocarcinoma) stage IVb that spread from the uterus to both ovaries, the omentum, and the small intestine.  Also had gallbladder and appendix out at the same time (had gallstones).  Went through 6 rounds of carboplatin and taxol, which I finished in Sept., 2010, so I'm 5 years and 7 months out from chemo (and next week, I'll be six years out from surgery).  Have been NED since surgery and chemo ended.  Had one scare (unexplained mass) which turned out not to be cancer (it didn't grow over time).  Down to yearly check-ups now at two different doctors (have a gyn/onc in one hospital who did the surgery and an oncologist in another who did my chemo).  Due to go back to the gyn/onc in June, but haven't been called to schedule yet.  

  • It happened to Me
    It happened to Me Member Posts: 206
    edited May 2016 #22
    UPSC grade 3 Stage 3a - Dx June 19, 2013

    Thanks for this thread.  So encouraging to hear of all the NED's.  Had surgery July, 2013, 6 rounds of chemo. (carbo/taxol) from Aug. 2013 to Jan. 2014.  Have been NED for two years and 4 months.   Great idea Debrajo!!!  Welcome newbies'.  This is a great group of Peach Sisters.

    Jeanette

  • ConnieSW
    ConnieSW Member Posts: 1,578 **
    edited May 2016 #23

    Dx February 2012 with UPSC stage 1a.  Treated with surgery, chemo, brachytherapy.  NED since ct scan in October of 2012.  See my doc every 4 months and am feeling good.  I am not posting much since everyone is doing such a good job answering questions but I still read everyday, just not compulsively all day long like I used to.  I feel bad every time someone new comes on board but so glad she found her way here.  

  • giggs100
    giggs100 Member Posts: 91
    I am here

    I have Uterine Carcinosarcoma Stage lllC2 October 2015.  Surgery November 2, 2015.  6 rounds of chemo (taxol/ifex/messna)  We are back from Florida as of last Thursday.  It was a wonderful month with most days of sunshine and beautiful weather.  Relaxing and enjoying life.  Today was a doctor appointment involving a CT scan after chemo.  GREAT news everything is clear and OK.   Will go back for doctor appointment in 3 months to just check and make sure all is well(checkups will be every 3 months for now).  Don't have to have another scan for 6 months.  Am sure happy with this appointment. 

     

     

  • Lou Ann M
    Lou Ann M Member Posts: 996
    I am still here

    serous papillary endometreial andocarcinoma stage IV high grade diagnosed Aug 2012 radical hysterictomy October 2012.  6 rounds of Taxol/Carbo, 28 external radiation 2 brachtherapy, 7 months NED.  Metastized along my lymphattic system one in my neck 2 on my liver and several in my abdomaen.  5 more Taxol/Carbo.  Stopped early because of damage to my blood .  4 Months of NED  metastis near my heart and beten my intestines.  4 more Taxol/Carbo when I had reactions to the Carbo. Tried Taxol by itself that didn't work. Switched to Doxil after 7 of the those I ended up with a bowel blockage sea tumor grew intwined itself between my small intestines.  Surgery to,remove tumor and 42 cm of intestines.  Went back to the taxol/Carbo with a desencitizing program for the Carbo worked for 7 rounds when I,had a reaction to the the Carbo again.  Tried two rounds of Topotecan, but stopped because it wasn't working at all.    My doctor was able to get approval for me for Avastin and we are just starting that.  I have had one round of that.  So for the side effects seem to me minimal and it will be several months before q know if it is working.  I know my story may sound discouraging, but I have had many more good days than bad.  I have learned to enjoy my days and I look forward to many more.  I have been blessed in many ways.  I have found out what a wonderful family I have, great friends, and the best medical care.  Hugs and prayers, Lou Ann

  • cared1027
    cared1027 Member Posts: 8
    edited May 2016 #26
    Thankfully NED

    Surgery 4/2012. Stage 1a, Grade 3 Clear Cell.  No additional treatment.  Active surveillance every 3 months for 2 years and now every 6 mo with my 4 year check up tomorrow.  Prayers for all!

  • survivingsu
    survivingsu Member Posts: 134
    edited May 2016 #27
    Roll Call - I'm happy & here

    It's been since 2009, NED!

  • CindylovesMike
    CindylovesMike Member Posts: 50
    Roll Call

    Hi all, I joined last night but was here in 2014 looking around. I was diagnosed in Dec 2012 with uterine cancer stage 1 grade 1a. 2 years later had blood in my plehm went and got xray had 3 1/2 cm lung tumor. it was a metasis from the uterine cancer. They removed my middle lobe of rt lung along with the tumor. then I had 6 rounds of chemo. I am still clear, I have another ct scan 1st of June. I still am so fatigued just can't seem to get feeling really good. Maybe this is as good as it gets. I have been researching nutrition and supplements. None of my docs have ever talked to me about what I should eat just the medical part of things. has anyone else looked in to natural ways of dealing with this? My onco told me this would come back probably too my lungs again, so feeling scared of this next scan. I just want hope.  thanks for letting me vent hugs and love to you all, Cindy from Oregon.

       

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **

    Roll Call

    Hi all, I joined last night but was here in 2014 looking around. I was diagnosed in Dec 2012 with uterine cancer stage 1 grade 1a. 2 years later had blood in my plehm went and got xray had 3 1/2 cm lung tumor. it was a metasis from the uterine cancer. They removed my middle lobe of rt lung along with the tumor. then I had 6 rounds of chemo. I am still clear, I have another ct scan 1st of June. I still am so fatigued just can't seem to get feeling really good. Maybe this is as good as it gets. I have been researching nutrition and supplements. None of my docs have ever talked to me about what I should eat just the medical part of things. has anyone else looked in to natural ways of dealing with this? My onco told me this would come back probably too my lungs again, so feeling scared of this next scan. I just want hope.  thanks for letting me vent hugs and love to you all, Cindy from Oregon.

       

    Cindy, glad you joined. I

    Cindy, glad you joined. I sure hope your scan comes back clean. I don't blame you for being scared. This is really crappy stuff to deal with. And, a recurrence has to be the hardest thing ever. There are several women on our board that have experience with this and can help you through your concerns.

    Please continue to reach out. We are all here for each other!

    Love and Hugs,

    Cindi

  • joyce6611
    joyce6611 Member Posts: 48
    I am here

    I was diagnosed a stage I b in August of 2012.  I was NED until October 2015.  I now have nodules in both lungs and am a stage 4.  i will be getting my 8th carbo-taxol on May 6.  I am now on a high dosage of Metformin with the chemo.  My nodules have finally started shrinking more with the addition of Metformin.  I am so glad to know all of you!

    Hugs to all!

    Joyce

  • BabyCoach
    BabyCoach Member Posts: 95
    Checking in

    4 weeks post DiVinci with grade 1 Stage 1-A and just trying to get my stamina back. Spending energy experimenting with healthier diet: plant based, sugar free, fish & no hormone chicken, red meat no more than 2X month. Husband not as enthusiastic! Major trip postponed until September because no energy.  3 month check ups scheduled to watch for any recurrence. 

    Appreciating all your posts so much. 

    Mary Ann