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That time again!

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

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

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

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's picture
Soup52
Posts: 906
Joined: Jan 2016

Still in treatment. Praying for NED.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1808
Joined: Jun 2015

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

DebiR
Posts: 39
Joined: Jul 2014

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's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

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's picture
Kvdyson
Posts: 789
Joined: Jan 2016

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

namedropper
Posts: 102
Joined: Dec 2014

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's picture
debrajo
Posts: 1095
Joined: Sep 2011

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's picture
debrajo
Posts: 1095
Joined: Sep 2011

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

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

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

Love,

Eldri

Ardnasnit's picture
Ardnasnit
Posts: 30
Joined: Jul 2014

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's picture
brissance
Posts: 192
Joined: May 2016

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 :)

 

 

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Oh I LOVE LOVE LOVED seeing your Peppermint Patty!! Made me smile. THANKS!!

I hit my 3 year anniversary (since diagnosis/surgery) yesterday. Was stage 3B, carcinosarcoma (grade 3 like yours).Glad you are enjoying the good things along the way as you walk through treatment, etc.!!

-jane

pinkuke's picture
pinkuke
Posts: 5
Joined: Mar 2016

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's picture
debrajo
Posts: 1095
Joined: Sep 2011

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's picture
Moped7946
Posts: 40
Joined: May 2016

who or WHAT is NED?

 

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

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

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

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

BC Brady's picture
BC Brady
Posts: 70
Joined: May 2015

Sandy - I read an earlier post when you were diagnosed - glad to see you post again and that NED is your dance partner. I am still battling here in Oswego, NY - treating at Roswell Cancer Institute in Buffalo. Stage 4 uterine cancer - but giving it all I've got. I hope I follow in your footsteps. xox

Billie

Kathy G.'s picture
Kathy G.
Posts: 235
Joined: Dec 2012

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
Posts: 87
Joined: Oct 2011

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
Posts: 574
Joined: Feb 2013

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.  

BC Brady's picture
BC Brady
Posts: 70
Joined: May 2015

Absolutely makes me hopeful - thanks for posting. Sending good vibes for your June appt. XO

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

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
Posts: 1584
Joined: Jun 2012

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's picture
giggs100
Posts: 91
Joined: Oct 2015

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's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

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

BC Brady's picture
BC Brady
Posts: 70
Joined: May 2015

I look for stories that are similar to mine - been reading your posts but didn't realize you and I had so many similarities. You are a warrior for sure and I love how positive and unassuming you are - keep fighting and I will too!

Billie

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

Hey Lou Ann,  I was UPSC Stage IV in Jan. 2014.  Surgery, chemo (carboplatin-paclitaxel), radiation.  5 months NED and then recurrence in lymph nodes before my hair came back.  Bummer!  Went on Doxil and had a HORRIBLE  reaction.  Lost so much skin I couldn't walk, or wear much in the way of clothes.  Had to heal and then they wanted me to go on doxirubicon.  I said no, and requested Avastin as a single agent.  Also added a naturopathic oncologist who put me on supplements and mistletoe injections.  Have been on Avastin for over a year, last three scans have been good. The one last week basically NED.  I am going to stay on Avastin, but stretching the infusion cycle to 4 weeks for the next 3 months.  They are going to treat me as tho I have a "chronic disease", which is more cautious than going off everything for now.  It's been a trek but I feel like I'm getting there.  Hoping the same for you! - Helen

cared1027's picture
cared1027
Posts: 8
Joined: Jul 2012

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's picture
survivingsu
Posts: 134
Joined: Apr 2013

It's been since 2009, NED!

CindylovesMike's picture
CindylovesMike
Posts: 50
Joined: May 2016

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's picture
TeddyandBears_Mom
Posts: 1808
Joined: Jun 2015

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

CindylovesMike's picture
CindylovesMike
Posts: 50
Joined: May 2016

I need a support group, seems there are none in the town where I live. Very glad to find this. Thank you for the well wishes, I know what you all are going through it's like a nightmare and you just wanna wake up.

Hugs and Prayers, Cindy

joyce6611
Posts: 48
Joined: Oct 2015

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

BC Brady's picture
BC Brady
Posts: 70
Joined: May 2015

Started on Metformin a week ago - glad it has had a good effect for you as it has 'takingcontrol58'. My uterine cancer - stage 4 - metastisized from one cancerous polyp to the omentum and many nodules. Solid tumors were removed with total hysterectomy and 6 rounds of carbo/taxol last March to July 2015. It must've been lurking in my nodes after a clear scan in August because by October I had a rising CA 125 and several new areas of progression. Continuing to fight with the rest of the chemo cookbook as I've had some resistance to the platinum based drugs in this second go-round. I'm doing really well in spite of all that tho - and really feel that the metformin will kick me over the top of this ridiculous mountain we are all climbing. Much love to you XOX,

Billie

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

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

SettledSue's picture
SettledSue
Posts: 55
Joined: May 2012

Nice to see so many familiar faces here. I have been coming here since 2012 when I was diagnosed with Stage 2 clear cell and had surgery and chemo. In 2013 two small spots of cancer were found near my vaginal cuff and I had 28 radiation treatments. No sign of cancer since then. 

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

Both UPSC and carcinosarcoma (MMMT) stage 1A. Had radical hysterectomy Nov 18, 2015, have now finished 6 rounds of chemo, will have 3rd of 3 brachytherapy treatments this coming Monday. In a few weeks I'll have my first post treatment scan. Have my fingers and toes crossed! 

AWK
Posts: 364
Joined: Mar 2013

Dx April 2013 stage IIIC UPSC.  Second and third opinions have me at IVB.  I have never been NED  and am currently being treated with Opdivo under a compassionate approval.  This is an immunotherapy.  I have been pretty quiet lately due to ongoing complications related to anemia, then ended up in the hospital for ten days with DVTs in both legs and my abdomen.  God bless blood and plasma donors as I have lost track of how many transfusions I have had.  I am working on getting my strength back in my legs; no more horseback riding for me due to my blood issues.  I have missed you all!  

 

Stay strong and thrive!  Anne

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

(((Anne))) we've been worried about you.  I'm so glad you are getting the Opdivo.  There is another lady on here trying to get it too.  Hopefully this will be a huge breakthrough!!  Please keep us updated on how you're doing.  Hospital stays are no fun but sometimes a person needs that to get back on the right track.

Love,

Eldri

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Thank goodness you posted!  I was about to send out a search party looking for you!  I have only heard good things about Opdivo so hope it keeps you stable and feeling well for the next 100 years!  Thanks for posting, feel better!  Best, Debrajo

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I am so glad to hear from you.  I have been worried.  Glad you are getting to give the Opdivo a try.  I am praying it works for you and that you see many years of NED.  Hugs and prayers, Lou Ann

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

So sorry about all the complications. I know how much you must be missing horseback riding. I so hope this new treatment will be a breakthrough for you! Love and Hugs, Sandy

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2939
Joined: Mar 2013

Anne!!!!  It is SO good to hear from you!!!!!!!!!!!!  Praying for your continued recovery.

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

Take care of you!  I have been looking for posts from you wondering how you were doing.  Sending healing thougts ytour way.  Hope you are feeling stronger soon!  Hugs! - Helen

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Good to hear from you and better yet to hear you are still soldiering on.  Here's hoping the Opdivo works for you and the others who are undergoing treatment with it.

Hugs to you!

Chris

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Glad you are doing what you need to do and grateful. It's encouraging to all of us - even some us stalkers!

-j

ConnieSW
Posts: 1584
Joined: Jun 2012

hearing from you made my day.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1808
Joined: Jun 2015

So happy to hear from you! Glad you are getting the Opdivo and I hope it has less impacts on you from a side effects perspective and major impacts from getting cancer out of your body! You have been missed by all of us. Keep building your strength and come back to us when you are up to it. In the meantime, we will continue to push positive thoughts and energy your way.

Love and Hugs,

Cindi

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