Let's do a roll call!
Comments
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Cancers
2009 had undifferentiated small cell uterine carcinoma,a rare and aggressive cancer. Treated with simultaneous radiation and chemo, then surgery, then follow-up chemo. 9 years later, May 2018, now dealing with high risk MDS blood cancer that resulted from the prior treatments which saved my life 9 years ago. It's hard, but I'm hanging in there!
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Present
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?
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Great Idea for this Roll Call
Name or Nickname: Jeanette
Type of Cancer: UPSC
Grade & Stage: Grade 3 Stage 3a
Date of Diagnosis: June 19, 2013
Treatment: DaVinci robotic total hysterectomy July, 2013, started six rounds of Carbo/Taxol in Aug., 2013.
Where Treated: Diagnosed in Bettendorf, IA and surgery and chemo. at University of Iowa, Iowa City, IA.
Outcome: NED since Jan. 2014
Anything Else: I have a couple of spots that are numb that where the nerves were "dinged" during surgery. I had neuropathy in my hands and feet and the doctor only gave me 85% of the chemo. on my last cycle so it would help prevent permanent. It worked. The only symptom I had was spotting or bleeding from Feb. - May 2013, (that's when I started tracking it, so don't know if that's when the bleeding/spotting actually started). I was told that UPSC usually occurs in women in their 70's and 80's. My dx was a miracle because they found two different abnormal cells from my pap test and uterine cancer isn't usually found on pap test. I give praise to God for placing those two different kinds of cells on that pap test. While I never want cancer EVER again, I wouldn't trade my experience for anything. I have grown SO much as a person and been able to help other people through their experiences. Instead of people constantly calling me for information, I started a CaringBridge blog and that really helped people know what what going on with my progress. Support from those you love is SO very important. The last thing I would comment on is that I found that people followed my lead as to my communication about my cancer. I talked about it, made fun of it, showed off my bald head and people seemed to be more relaxed around me. People will say stupid stuff because they don't know what to say. Show them a little grace and educate them. We are all survivors!
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Roll Call
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!
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Roll call
I am new
Name: sarahDiagnosed March 20, 2018Grade 2. Stage 2bHad total hysterectomy ans now having internal and external radiationOn number 15 and having side effects0 -
Roll Call
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.
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endometrial cancer iiic
Name or Nickname: Christine
Type of Cancer: endometrial adenocarcinoma
Grade & Stage: Stage IIIC, grade 2; cancer found in 3 of 17 lymph nodes. Originally thought to be stage 1 grade 2 until pathology report came back after the surgery.
Date of Diagnosis: June 2015
Treatment: Robotic complete hysterectomy. Sandwich protocol: 3 rounds of carboplatin/paclitaxol spaced 3 weeks apart, then 6 weeks pelvic radiation, then 3 more chemos
Where Treated: Van Elslander Cancer Center St. John Hospital, Detroit, Michigan
Outcome: cancer has not come back, now 3 years out. being watched by oncologist for 5 years.
Anything Else: Still have some neuropathy in feet that is permanent but does not affect life much. Recovered from all the intestinal issues from the chemo/radiation and in good health at this time. Hair returned finally. Take 1 baby aspirin, plus vitamin D and a multivitamin, drink Kefir daily.
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Roll Call
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.
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This will help.
Name or Nickname: Jacjac2 Jackie Brewer
Type of Cancer: Uterine Cancer
Grade & Stage: Metastasized (Recurrent)
Date of Diagnosis: Dec. 2015
Treatment: Currently on Avastin
Where Treated: Sacred Heart Cancer Center
Outcome: Living with Cancer ( No Cure )
Anything Else: Have seen MD Anderson and Current Doctors. Was suppose to be on Doxil the rest of my life. That burned my body. Now on Avastin every three weeks till it stops then on to something else.
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Roll Call July 2018
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!
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Roll Call
Name or Nickname: Laura
Type of Cancer: Endometrial adenocarcinoma dx at age 45
Grade & Stage: Stage 3C1, grade 3 (technically stage 4 bc a piece of tissue from previously operation adhered to my bowel)
Date of Diagnosis: January 2011
Treatment: 8 rounds of carboplatin and taxol after hysterectomy
Where Treated: Long Island, NY
Outcome: NED so far
Anything Else: My cancer was found by accident. I first had an ablasion and my first doctor missed the fact that I had cancer. When my symptoms didn't stop, I went to another doctor that did a partial hysterecomy, there the cancer was found.
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Hello 6 years out
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!!
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Name or Nickname: Trish
Name or Nickname: Trish
Type of Cancer: MMMT or Uterine Carcinomasarcoman
Grade & Stage: Grade 3C1 - Tumor in uterus was stage 1a but found 2 micoscopic cells in 1 pelive lymph node upgrade to stage 3C
Date of Diagnosis: 1 April 2011
Treatment: Full radical hystorectomy. Six rounds of Carbo/ Taxol. No radation. Last treatment was 22 Aug 2011.
Where Treated: UT Southwestern Hospital and Cancer Center Dallas, TX (it is a National Cancer Institute Recognized Cancer Center)
Outcome: NED after 7 years come Aug
Anything Else: Faith in God, Faith in the Drs that treated me, Faith in family and friends and Faith in myself to keep on going.
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Roll Call
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.
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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!
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derMausderMaus 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 care1 -
Name or Nickname: kinableu
Name or Nickname: kinableu
Type of Cancer: UPSC
Grade & Stage: 3 1A
Date of Diagnosis: 11/26/16
Treatment: Robotic hysterectomy with saplings-oophorectomy and lymph node mapping followed by chemo (Taxol and carboplTin) and radiation (brachytherapy)
Where Treated: Manhattan at Memorial Sloan Kettering
Outcome: My CT last week showed no recurrence or Mets I did have a rollercoaster ride with the chemo and still have neuropathy in feet legs and joints I was allergic to the Taxol as well and the steroids they gave me to help caused a lot their own side effects like insanely high blood sugar. Tried returning to work but now retired. Outlook on life has changed dramatically but I still feel isolated and a bit down. Trying to decide what’s next.
Anything Else: I feel very, very lucky though still wary. A big hug to all of you
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Name or Nickname: derMaus
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 !!
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About me page updatedderMaus said:Name or Nickname: derMaus
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 !!
Just updated my About Me Page and added a new photo of my grandson in the bluebonnets in April 2018. I am praying that I do not jink it because I updated before 22 Aug saying I was 7 years NED because I am not there yet ( amonth early) but Oh Well!. It is a month early. I try to update at least every year but missed last year. Year 5 is when I got my tatoo on my arm of the purple butterfly with the peach ribbon and the roman numberal V. Three more years and I get another V on my arm. trish
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I agree 100% with Bobbi!! IderMaus 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 100% with Bobbi!! I use the "blog" to update my story. It's easy to add a new chapter whenever you feel like it and I know it gets read because it tells me how many times it's been accessed. Another good idea is to find a "buddy." Maybe, someone, you feel close to and have been in email or phone contact with. Unfortunately, my two previous "buddies" are now gone but they both had my personal information along with the name of my daughter and how to get in touch with her just in case I fell off the face of the earth. After you've been here awhile, it's so hard to just lose touch with someone and not know if they've recovered, going through some really tough times or have passed. I use my real name on here and if you googled "Eldri," you'd find me; but for others, it's not so easy.
Love,
Eldri (I do belong to the "Eldri Club" on Facebook; we currently have three members!)
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