Let's do a roll call!

Name or Nickname: Mabound/Pat 

Type of Cancer:Endometrial Adenocarcinoma 

Grade & Stage: Stage 3a; Grade 3  90% PR (mod. to weak) & ER (mod. to strong) positive

Date of Diagnosis: March, 2016

Treatment: RAH, 1 round Carbo/Taxol, 5 rounds Carbo/Taxotere followed by 28 rounds pelvic 3D-CRT and 5 rounds vaginal boost (external bracy). Taking 160mg megace since 6 weeks after completing treatment.

Where Treated:CCS Oncology (Buffalo, NY area) Dr. David L. Marchetti (the best!)

Outcome: Almost 2 years NED since finishing chemo Aug. 31, 2016, but still high risk for recurrance due to to high grade. Don't think I'll ever feel safe, but I don't think about it unless I have to.

Anything Else: Still dealing with lingering neuropathy and a neurogenic bowel, but they don't complicate my life too much, so life is good. Making the permanent move to MA next week and not looking forward to giving up my gyn oncologist and trying to find a new one. Anyone from Boston area have a recommendation?

Name or Nickname:  Red Dahlia

Type of Cancer: Endometroid Adenocarcinoma

Grade & Stage:  Stage 3A  Grade 2

Date of Diagnosis:   September 2015  after several years of clear vaginal discharge, heavy bleeding and clotting.  I had two biopsies during this time which were negaative and a vaginal ultrasound 2 months before diagnosis which was read as normal with exception of a fibroid.  After being given some options to get rid of fibroid I chose to have a procedure in which I had to have an MRI prior to receiving it.  The MRI came back suspicious for cancer.  The obgyn I was seeing said he didn't believe that and thought it was just a degenerating fibroid.

I had been told all along all my symptoms were related to peri-menopause(was 54yrs,).  Refered to Mayo Clinic in Rochester.  Gyn/Oncologist saw tumor on exam and biopsied it on Wednesday...in for surgery the following Monday.  I decided to have all further treatments and checkups there and not back near my hometown.  Best decision I ever made...first class institution.

Treatment:  Radical Hysterectomy in October 2015  found both extensive endometriosis and adenomyosis, neither of which I knew I had.  Taxol and Carboplatin (6 treatments)  External Radiation  (28 sessions)  Brachytherapy (2 sessions)  I was given the sandwich method of treatment. 

Where Treated:  Mayo Clinic in Rochester Minnesota

Outcome:  All scans and check ups to this point have shown NED.  Was just seen in May and am moving to six months checks.

Anything Else:  I know it doesn't help everyone, but accupuncture was extremely helpful for me.  I received it throughout my treatment and continue today.  The accupuncturist helped with some bladder nerve issues I had due to surgery as well as working to help me not experience neuropathy.  I don't post alot, but have read many posts over the past almost three years.   This site and all the wonderful ladies on here gave me more hope and information than anywhere else.  I am forever grateful to have few complications from my treatment.  Life is good!

Judi

Endometrial Adenocarcinoma

Grade 3 stage 3 (Micromets to pelvic node found after node sampling during TAHBSO were initially read as negative), so no other nodal info available.

March 2017

TAH-BSO robotic,  4 cycles carbo/taxol, 2 cycles carbo/taxotere, 3 brachytherapy. Debated external pelvic radiation but I was very weak from chemo and elected to save it if needed for recurrence. 

Swedish in Seattle

NED to date

Severe neuropathy day 3 first cycle of chemo, still cannot feel feet (but at least no pain). Low blood counts and lots of Neulasta. Confusion and memory problems were a problem during chemo, somewhat better now but I have had to reshape how I live. I am in my 60s. I went right to OBGYN after a few drops of bleeding noted once and it was already a 5 cm tumor -

we need to work on better screening for this disease.

Name or Nickname: Sandy

Type of Cancer: Endometriod Adenocarcinoma

Grade & Stage: Stage IIIC1

Date of Diagnosis: 12/5/2016

Treatment: Total hysterectomy, 6 rounds carboplatin/Paclitaxel, 3 brachy theraphy treatments

Where Treated: Ellis Fischel-Columbia MO

Outcome: 1 year NED as of June 20, 2018

Anything Else: 1 year later, and other than a port and a scar, I don't know that I have had anything done! Hair came back, but I am keeping it short (so much easier!), teaching my fitness classes, enjoying life! My faith in God was strong, but grew stronger, he is so faithful! My relationship with my husband was good, and became better! I have been able to speak at 2 realy for life events, and although I am not a public speaker, I will do so whenever asked, to give God the glory for being alive, and give others hope.

Name or Nickname: Lori/Northwoodsgirl

Type of Cancer: Endometrial Adenocarcinoma

Grade & Stage: 2 B

Date of Diagnosis: May 2009

Treatment: Total abdominal hysterectomy, removal of omentum, para-arotic node and 26 lymph nodes (open abdominal surgical approach), Chemotherapy “sandwich” protocol: Carboplatin/Taxol infusion via central venous access port every 21 days x3. External radiation 26 treatments and 3 brachytherapy (internal) radiation treatments. Then 3 more cycles of Carbo/Taxol. Follow up every 3 months for 2 years and then every 6 months for 3 years. 

Where Treated: University of Minnesota’s Womens Cancer Center

Outcome: NED 

Anything Else: Thankful to be a survivor. Live with neuropathy in feet and finger tips. Also have lymphedema in lower extremities and pelvis. Also developed Ani Levitor Syndrome which is an excruciating nerve pain that comes on for no apparent reason ( ”attacks come without warning and last an hour-less frequent occurances now. ) I think it was caused  by radiation. 

I am thankful for being in good health. My Mom died of the same type, stage and grade of uterine cancer as I had. I was diagnosed 4 years after my Mom died. I was 20 years younger when diagnosed than my Mom was when she was diagnosed. I miss her everyday!  My faith in God was what got me through the long fight for survival. This discussion forum is so helpful and a great service to so many. Thank you American Cancer Society! 

I was diagnosed in May of 2012? Total hysterectomy in June and chemo started in late June! Radiation for30 days! Then diagnosed with Papillary Throid cancer in February my thyroid was removed and and thyroid radioact pill given in May! By 2016 my UPSC moved to my middle lobe and was resextend and chemo given again!! 1 1/2 years later my lower right lobe had a cancer nodudle and had a lobectomy! Foundation one testing showed I have a missing sequence in my BRCA gene and wants me to go on Lynparza! I would love to try holistic!homeopathic for a while! We shall see the path I follow!!

  My name is Sue

  I had MMMT stage 2 grade 3 Diagnosed June 2014. Had 5 taxol/Carbo and internal radition after a total Histerectomy at the Cleveland clinic in Cleveland  Ohio. they stopped because of the neuropathy in my hands and feet.. My CA 125 has been good and I have been ned since oct. 2014 for the MMMT..   In Dec. 2016 my lobular breast cancer came back after 4 1/2 years and went to my lungs and also some lumps in my head and on my body.  I have been on Faslodex that are shots and I also take Ibrance chemo pills for 3 weeks and 1 week off and the scans look great so far. I am 77 years young and still work from home 25 hours a week to pay for my Gluten free food. I have been on a Gluten free diet since 2008. I am tired and have a tough time keeping my iron up do to food issues. I also have RA and Sjogrens but I am a fighter so hang in there and fight too. 

derMaus said:

ROLL CALL PLEA

I love our roll calls! I love the updates and meeting the new members. Obvsly I wish we didn't have new members, but you get the idea. And, I love Eldri for getting it started again! Now to my all-caps plea...;0

Would you please consider taking a moment to update, or post, on your About Me page ? Let me tell you why: when I first started, and even now, I was looking for long-term survivor stories. I figured I could learn a lot from them and, not to be morbid, I wanted to see people who'd survived and were still around. Recent dates and lots of posts over a long time period brought me the most comfort. Best of all was when I went to their About Me page and I found details about cases like my own. That information kept me from complete despair in the months after I was first diagnosed, and still does now. It's in the nature of that I'm making this plea.

Even if you don't want to write anything new, and I certainly don't blame you if you don't, I'd love it if you'd consider cutting and pasting whatever you wrote on your roll call post onto your About Me page. If even a few people fill in blank About Me's it would be wonderful. Let me add that if you're loathe to do so I certainly understand: it took me months to fill mine out because I really, REALLY hated to face the reality of where I was and put it all down for me, and the world, to see. Please feel free to ignore this request, I would never want to be pushy or insensitive; I just want to tell you how much it helped me and ask you to consider the same. Thank you and bless you all!

I agree with you completely!
Take care 

Name or Nickname: derMaus (Bobbi). Nickname in honor of my beloved cat, der Fledermaus.

Type of Cancer: Go figure. Original cancer and mets were uterine, undifferentiated. New eruption @ pelvic mass is sarcoma and/or intestinal. Please don't knick me off the board?

Grade & Stage: Grade 3, Stage IIIb

Date of Diagnosis: November 8, 2016. I got a cancer diagnosis and Donald Trump for president on the same day. Thanks, fate !

Treatment: Lots; see my About Me page

Where Treated:  same as above

Outcome: Work in progress. 

Anything Else: Trying to post updates on my About Me page but self discipline is lacking. Feel free to prod me. LOVE these roll calls, thanks again Eldri !!