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Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatment?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

We have so many wonderful new people posting and I have been so busy with treatments and trying to keep my head above water at work. I am afraid I haven't really welcomed everyone (I APOLOGIZE; you can't possibly KNOW how glad I am that you all have found us!), and I am having trouble keeping everyone straight in my poor chemo-brained head.

So could you each just post under this thread with the name you'd like us to call you, what your cancer diagnosis is (if you have it yet), and where you are in your treatment. And if you want to say where you live, that would be cool too. I'll start it off:

Linda Procopio:
Stage III-c UPSC, radical hysterectomy 10/10/09; just finished 6 rounds of carboplatin/paciltaxol (sp?); with 8 weeks of radiation coming up after I recover from the chemo. I live in central Pennsylvania.

SettledSue's picture
SettledSue
Posts: 24
Joined: May 2012

I'm Susan in central NJ and was diagnosed wth clear cell endometrial cancer 3/28/12. I had a hysterectomy 4/02, have had 3 brachytherapy treatments and just had 5th of scheduled 6 carboplatin/taxol treatments. I am 61.

beila
Posts: 97
Joined: Sep 2012

liz....did you actually get to have discussions with NIH???
Could you tell me how you got to do this?

I am a doctor myself, and thought that this would enable me to talk to other MDs about my case (USPC did not respond to Taxol/Carbo)
I have been trying Dana Farber in Boston and Sloan Kettering in NY, but they will only do formal consult

I have and appt with Medical Oncologist at Toronto's cancer centre, Princess Margaret Hosp on Oct 22, but want to arrive educated about other chemo options

Please let me know how I can get through and have conversations with NIH

Thanks, and I am very glad you feel great and are walking the dogs...mine has been very patient with less walks than before...I feel fine except for post chemo fatigue

Beila

Mammi
Posts: 3
Joined: Apr 2011

Wow! Great to see so many of us here! Good luck to everyone!

Tina Jenkins: adeno endometrial carcenoma Stage II-b 2005, radical hysterectomy 7/17/05, 3 internal radiation treatments 2005. Treated at the University of Iowa & live in Iowa.

Goldamillie
Posts: 26
Joined: Oct 2012

I have this since July 2010. I hope this finds you.

Best

Golda Millie in Baltimore MD

DoonyL7
Posts: 33
Joined: Sep 2012

hello linda,
My name is Lorna. I have Stage IIIA Grade 3 UPSC, diagnosed in June. Had surgery, 3 rounds of carbo/tozol chemo. I am one week into radiation which they tell me I will finish on Nov 21. Oh Joy, I get to do another round of chemo for the holidays. I live in western Az.

Sandy3185's picture
Sandy3185
Posts: 49
Joined: Oct 2013

Wow, this is a very long thread! It is a great read though. I thought I would post to bring it to the top. I was diagnosed 10/2013 and had a radical hysterectomy on Dec 5th. Diagnosed with UPSC in uterus and cervix. Had 6 rounds of chemo( every three weeks from 1/17/13 through 5/2/14 and then 3 rounds brachytherapy. I finished treatment in June and have had two follow up visits with no evidence of disease and hoping to stay the way!

daylady's picture
daylady
Posts: 29
Joined: Dec 2014

Stage IVb UPSC; total hysterectomy, omenectomy, etc. in Jan. 2014; 6 rounds chemo (Caboplatin/Taxil), plus one round of vaginal brachyteraphy (3 treatments); NED in July 2014; recurrence in pelvic nodes in Dec. 2014; going through 6 rounds of chemo (Doxil); doing pretty well except for mouth sores;  No tumors, masses, or organ involvement so hoping this treatment works; my oncologist is optimistic.  Husband and family very supportive.  Really monitor diet; take supplements; walk 5 miles a day; have also lost 45 pounds (intentional) and have 10 pounds to go to goal weight.

Stabler
Posts: 51
Joined: Feb 2013

Debbie Dowd

Stage 0-1  lucky enough to have found it Really early, it was only about 10% invasive.  Radical hysterectomy  12/31/12.  No further treatment.  Just hit the two year mark.  Still cancer free.  I live in central Michigan.

cheerful
Posts: 142
Joined: Apr 2011

I was diagnosed with Stage 1 as my cancer was a polyp of 5 centimeters of UPSC in February of 2011 so I have just reached my 4 year mark.  So far, I remain with No evidence of disease and I hope it continues this way.

I will be having a cat scan done next month in March and will be seeing my oncoogist in April for my 6 month checkup.  I am very grateful and thankful that I remain with No Evidence of Disease and very happy and grateful that my cancer was caught early.

I have changed my eating habits for the better and enjoy each and every day.  I went through 6 rounds of carboplatin and taxol and 3 brachytherapy treatments.  I started my chemo in April of 2011 and finished the end of August of 2011 and had my 3 brachytherapy treatments the end of September of 2011 and finished in mid October of 2011.

I was 59 1/2 when I was diagnosed and I am now 63 years old.  I live in the suburbs of Philadelphia, PA in Delaware County.

Cheerful

a/k/a Jane 

pinky104
Posts: 140
Joined: Feb 2013

I had surgery for stage IVb UPSC in May of 2010.  I had a total hysterectomy, bilateral salpingo-oophorectomy, omentectomy, removal of both ovaries and a small amount of cancer in the ilium, plus had my gallbldadder and appendix taken out at the same time (gallstones had been found on my CT scan).  I also had lymph nodes removed.  I had 6 rounds of carboplatin and taxol after the surgery, no radiation.  I had a scare last year because a mass was found in my paracolic gutter after I'd had abdominal pain, but it doesn't appear to be cancerous because it hasn't grown. It was watched for 6 months and  had a PET scan, three CT scans and labs, including normal CA-125's last year.  I'll have one last set of labs and a CT scan and be seen again in June, 2015 for a final recheck.  If they're negative, my gyn/onc will stop checking on it. It could be something else like a fluid collection from lymph node removal.

I live in a small town in upstate NY about an hour from the Vermont border.  

Carol 

TXBlue's picture
TXBlue
Posts: 3
Joined: Feb 2015

I am 57 years old and live just north of San Antonio, TX on a ranch. I am undiagnosed as of today. All of this started in November when I had substantial bleeding after being more than 10 years postmenopausal. After 2 ER trips, 2 GYNs, lots of exams, blood tests, 2 sonograms, etc... I have been told that I have fibroids and endometriosis. I have had 2 attempted biopsies that were unsuccessful. Apparently one of the fibroids is sitting at the opening of my cervix and is more solid than it should be which prevented the doctors from getting "good" biopsies. So I have been told that I may have uterine cancer and have been referred to a GYN Oncologist in San Antonio, TX. After first meeting/examination, I am scheduled for a D&C on the 23rd of February. Hopefully, I will have some answers after this procedure. Until then, it is a waiting game. So, I am keeping my sense of humor, staying positive and hopeful but also trying to educate myself on all of this.

Maggie_mac
Posts: 15
Joined: Mar 2012

My UPSC [IVb]is very much like Carol's, only I started a little after she did.  My surgery was in November 2011, and included carcinoma of the uterus, ovaries, tubes, appendix, omentum and parametrium.  This was followed by the series of 6 Taxol/Carboplatin sessions and then oral megestrol.  This held me for about 10 months when my CA 125 jumped back to 365.  In Feb 2013 I started round 2 of T/C for another 6 sessions ending in June.   Now I was taking tamoxifen.  In another 6 months my CA 125 was back up to 122; so I started round 3 followed by letrozole.  Yup, by this past Christmas the CA 125 was up again and I am currently considered platnum resistant, so after a total of 18 T/C infusions, I started on Doxil and have gone 3 rounds on that.  Unfortunately, that doesn't seem like my magic bullet either.  Since Christmas I've had 3 infusions and the CA 125 has gone from 74 to 317.  In another 2 1/2 weeks I'll start on Cytoxan/Avastin.

I live outside of Philadelphia, and have been very fortunate to have multiple treatment center options.  To date I've had everything done at the University of Pennsylvania and they are a lovely caring team.  We all know how difficult this is not only for us, but for our families too.  God bless you all and remember to remain grateful for all the wonderful things life has given us.

Maggie    

It happened to Me's picture
It happened to Me
Posts: 163
Joined: Apr 2014

Was diagnosed June, 2013 with UPSC.  Total hysterectomy (uterus, tubes, ovaries, cervix) in July 2013.  Staged IIIa:  besides little tumor in uterus, found pea sized tumor on back of pelvis, cancer on left ovary and cancer on left paracolic gutter.  Pelvic wash was positive.  No lymph node involvement.  6 rounds of carbo/taxel beginning in Aug. 2013 and ending in Jan. 2014.  They felt radiation would not benefit me.   Have been NED since.  My one year after chemo. will be 2/19/15.   My CA125 was 9 when diagnosed and is now 4.  Doctor says I have a 50/50 chance of recurrence within 5 years.  I decided I was going to be on the 50% that doesn't get it back.  :)   

Jeanette

Sandy3185's picture
Sandy3185
Posts: 49
Joined: Oct 2013

linda was a wonderful woman who left us a legacy with her honest and insightful postings. If you would like to learn more about her, see her thread 

Uterine Papillary Serous Carcinoma (UPSC): any others here??? 

i was incredibly moved by her story and would encourage everyone who has not already read it to do so. You will also meet others there who have gone above and beyond in both their valiant fight with cancer but also with their efforts to share and help others in our group. Sandy

KayBB
Posts: 15
Joined: Nov 2014

Carcinosarcoma of the endometrium. MMMT

I am 63 years old. I live in Beaufort, NC.  On the 27th of October 2014, I had hysterectomy with three lymph nodes removed. I have stage3A Carcinosarcoma of the endometrium.
I started with 3 rounds of chemo (one every three weeks), 28 radiation treatments, (have three more radiation approximately three weeks rest, start another three rounds of chemos.
I had my surgery at Duke in Durham, North Carolina. I can't explain the peace I found while i was having the hysterectomy and the trust I have with my team of doctors. I trust this team of doctors so, that I am having my treatments at Duke. It is about a three hour drive from where I live but thank God I have family there. I am learning with this web site that I am not alone. With it being a rare cancer I am thankful that my daughter emailed me this web site.  
Living one day at a time!
Kay Babcock

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namedropper
Posts: 16
Joined: Dec 2014

This is Namedropper my real name is Sue I am 73 yers old from Cleveland, Ohio I was DX with MMMT uterine cancer June 2014 had 5 rounds of chemo and then 3 Brachytherapy treatments.  I had grade 3 stage 2 after my hysterectomy and 17 nodes taken out. The nodes were fine.   I am being treated by Dr. Chad M Michener at the Cleveland Clinic.  He is wonderful and explains things well.   I am a positive person and I will  listen to my  Doctor. My last 2 CT scans were clean so I can go until July before seeing him again.  He said to report any new symptons ASAP since this is a very aggressive cancer.   I will pray for others as I know they will pray for me.  

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