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Let's do a roll call!
 |
Jun 29, 2018 - 3:06 pm
It's been awhile since we've done a roll call and we have a lot of new ladies. Name or Nickname: Type of Cancer: Grade & Stage: Date of Diagnosis: Treatment: Where Treated: Outcome: Anything Else:
I'll go first! Name or Nickname: Eldri Type of Cancer: UPSC Grade & Stage: Stage II (oncologist's best guess), Grade 3 Date of Diagnosis: September 2015 Treatment: Six chemos were recommended - Carboplatin & Taxotere. I only made it through three after debilitating side effects. Where Treated: St. Vincent's Cancer Center, Green Bay, WI Outcome: NED, but I see my doctor next Tuesday so who knows? Anything Else: I believe I was given too much chemo. It's based on your weight but I am very sensitive to medication. I suffered a minor stroke - bleeding in the brain - after my third chemo. I have neuropathy in my hands and feet/legs which is the worst (but my Nyquil is still working pretty good). My balance is off, I have short-term memory problems, eye problems and severe gastrointestinal issues although I have been on a new diet for the last two months and it has seemed to help. Love, Eldri |
Joined: Feb 2014
Great idea, Eldri!
Name: Cathy
Type of Cancer: UPSC
Grade and Stage: Grade 3 and Stage 3a
Date of Dx: 10/14/13
Treatment (Tx): Hyterectomy, Oophorectomy, some lymph nodes removed, pelvic wash
Where Treated: Melbourne and Vero Beach, FL
Outcome: NED. Have neuropathy in toes and the balls of my feet from Chemo
Anything Else: Don’t waste time worrying as it robs you from living your life fully. Never, ever give up hope!
Cathy
Joined: Apr 2011
Re: Roll call
Name: Cheerful (a/k/a Jane)
Type of Cancer: UPSC
Grade and Stage: Grade 3 - Stage 1
Date of Diagnosis: February 2011; Reoccurrence - Oct. 2016 (Cancer left me in May of 2017)
Initial Treatment in April of 2011: Carboplatin, Taxol, 6 rounds; Brachytherapy - 3 rounds
No further treatments needed in 2017 from reoccurrence.
Where Treated: Crozer Chester (Fox Chase Cancer Center) Upland, PA
Outcome: Currently with No Evidence of Disease - Had Port put in in November of 2016; had Port Removed in June of 2018; cancer just left me since May of 2017.
Anything Else: Very Grateful to my Oncologist for closely monitoring me over the past year and a half; and very grateful and thankful to family and friends for praying for me and feel very blessed and thankful that I am with No evidence of disease.
Jane
Joined: Oct 2017
Name or Nickname: Veronica
Type of Cancer: Endometrial adenocarcinoma
Grade & Stage: Stage 3a, grade 2
Date of Diagnosis: September 2017
Treatment: 7 rounds of adriamyacin and carboplatin, 25 radiation treatments after hysterectomy
Where Treated: Arlington and Tysons Corner, VA
Outcome: NED so far
Anything Else: I was originally diagnosed with Stage 1, grade 1, but pathology after hysterectomy showed a few cells on one ovary. I was supposed to get 6 rounds of Taxol and carboplatin but I was allergic to the Taxol and desensitization didn't work. So I had the adriamyacin instead.
Joined: Jul 2014
We are very close to each
We are very close to each other. I am in Falls Church.
Joined: Jan 2018
My summary
Name or Nickname: Chris
Type of Cancer: Uterine Carcinosarcoma (MMMT)
Grade & Stage: Stage IIIB, Grade 3
Date of Diagnosis: November, 2016
Treatment: I had four cycles of Paclitaxel/Carboplatin, followed by four cycles of lfex/Mesna/Adriamycin. The use of different drugs for "phase 2" was planned from the beginning and not the result of any allergic reactions to the first two drugs. I then had 25 external radiation sessions.
Where Treated: Advocate Lutheran General Hospital, located in Park Ridge, Illinois (a suburb next to Chicago, Illinois).
Outcome: NED per latest CT scan in June 2018. I have very mild neuropathy in my feet. And sadly, my hair, already thinning, grew back even more sparsely.
Anything Else: I'm grateful for the time I've had since my diagnosis without significant problems or recurrence.
Joined: Feb 2013
Roll Call
Nickname: Pinky104
Type of Cancer: UPSC
Grade: 3
Stage IVb
Date of Diagnosis: March, 2010
Treatment: Total Hysterectomy, Salpingo-Oopherectomy, Incidental Cholecystectomy (for gallstones) and Appendectomy, Removal of a small amount of cancer from small intestine, Lymph Node Sampling, etc. (no cancer in any lymph nodes sampled). 6 rounds of Carboplatin and Taxol.
Where treated: Surgery at St. Peter's Hospital, Albany, NY, chemo at Glens Falls Hospital, Glens Falls, NY
Outcome: A long period of NED
Anything else: Incisional Hernia repair with mesh, 2012, Glens Falls Hospital, as a complication of my cancer surgery
Recurrence: March, 2017
Cancer wrapped around the ascending colon, in the peritoneum, paracolic gutter, and the muscle near my right hip. Found in two lymph nodes. Intestines found to be growing into the mesh from incisional hernia surgery. Found by a positive hemoccult test followed up by a colonoscopy.
Treatment: 2 resections of my intestines, one for cancer, and one for the "mess" of my intestines growing into the mesh, surgery to remove as much of the cancer as possible. All of the cancer in the muscle couldn't be removed without affecting my mobility. Had chemo again, starting with Carboplatin and Gemzar. Developed an allergic reaction to Carboplatin the 11th time I had it (2010 and 2017) and was switched to Cisplatin (and Gemzar) for the last round.
Where treated: Same 2 hospitals as before
Outcome: NED again
Currently having increased numbness in my thigh again and some bouts of diarrhea occasionally. Had CA-125 last week, which was up about 4 pts., but still in normal range (just like when I had my recurrence last year). Waiting for scheduling on CT scan, which should show whether or not cancer has returned again. Was told I was lucky to be able to be treated the last time since all the cancer grew in the same general area, and most recurrences are more spread out. Also was told I was very lucky the chemo worked on me.
Joined: May 2017
Type of Cancer: Uterine
Name: Jayne
Type of Cancer: Uterine Serous (UPSC)
Grade & Stage: 3 - 3B
Date of Diagnosis: May 1, 2017
Treatment: Surgery, Chemo, Radiation
Where Treated: University of Vermont Medical Center 's Cancer Center
Outcome: NED May 2018
Anything Else: Age: 58.
Joined: Jun 2012
Roll call
name: Connie
cancer type: UPSC
grade and stage: 3 1a
dx: March 2012
tx: surgery, chemo, brachytherapy
location: University Of Vermont Medical Center in Burlington, Vt and Plattsburgh, NY
outcome: NED. Mild neuropathy in my toes
anything else: I'm grateful for more time with my family, the lucky fluke that gave me an early dx, and all of you
Joined: May 2017
We must be close
Hi Connie,
We must be close though I suspect you are on the other side of the lake. I see Cheung Wong in Burlington. I work in Burlington at UVM.
Jayne
Joined: Feb 2018
Name or Nickname: Lisa
Name or Nickname: Lisa
Type of Cancer: Endometroid adenocarcinoma
Grade & Stage: Grade 2, Stage 3a (tumor in ovary)
Date of Diagnosis: November 2017
Treatment: Laparoscopic hysterectomy, bilateral oophorectomy, biopsies, 6 lymph nodes (all negative); had a cholecystectomy at the same time. Adjuvant chemotherapy, 6 cycles of paclitaxel and carboplatin, then 25 external radiation treatments. Finished June 2018.
Where Treated: Kaiser Permanente
Outcome: NED from surgery. The usual chemo side effects. I did have the allergic reaction to taxol, but was able to keep getting it. Thrombophlebitis from the carboplatin extravasating once. Still living with diarrhea from the radiation.
Anything Else: The friends we make are the silver lining to this unwelcome diagnosis.
Joined: Jul 2014
Name or Nickname: Sandra
Name or Nickname: Sandra
Type of Cancer: Endometrial adenocarcinoma
Grade & Stage: Stage 1a, Grade 2
Date of Diagnosis: May 2014
Treatment: Total Hysterectomy, 6 rounds of Taxol and carboplatin, 3 Brachytherapy
Where Treated: Fairfax, VA
Outcome: NED so far
Anything else: I learned that I am a lot stronger than I thought I was. I also learned that family (whether it is blood or friendship) is key. Everyone in my family including my 2 year old niece and nephew had a part in getting me through treatment.
Joined: Aug 2018
Hi Sandra
Hi Sandra
I have grade 2, 1b I was not given the opinion of chemo. Do you know why you had chemo for 1A, grade 2?
Thanks so much .
Denise.
Joined: Jul 2014
Hi Denise,
Hi Denise,
I don’t know why some of us with stage 1a have chemo and some don’t. I have been wondering that myself. I do know that after my surgery my GYN Onc took my case to the cancer board and it was decided I should do chemo and brachytherapy. During my follow up appointment after surgery my doctor said that my cancer was more aggressive then they had originally thought but I think she was referring to the fact that it was upgraded from a grade 1 to a grade 2 because I did not have an aggressive type of cancer. I am pretty sure she originally figured I would be done after surgery. Sorry I don’t have any answers for you.
Sandra
Joined: Feb 2018
Roll Call
Name or Nickname: Armywife
Type of Cancer: Endometrioid Endometrial
Grade & Stage: Grade 2 Stage IVB
Date of Diagnosis: April, 2017
Treatment: DaVinci robotic hysterectomy, Chemotherapy - 1 round carboplatin/taxol. Had acute onset severe neuropathy and an episode of aFib/RVR that landed me in the hospital. Unsure whether it was the taxol or the steroids that caused the heart episode. Second round of chemo was carboplatin only. Well tolerated. Rounds 3 -6 were carboplatin/taxotere. Radiation was recommended by my gyn-onc surgeon, but second opinion at MD Anderson was split - department head decided to reserve radiation for recurrence. By a miracle of God, the neuropathy which had rendered me nearly unable to walk or use my hands has 100% disappeared - and it did so before my second chemo began. I realize how unusual this is and I am so thankful.
Where Treated: San Antonio, TX
Outcome: Scans post-surgery (6/17) and post-chemo (10/17) were NED.
Anything Else: I am so grateful for all I have learned on this site. I read a lot before I joined, and I believe my treatment journey was made easier because I was armed with incredible loads of information. My doctor said she appreciates that I took initiative in my treatment plan and came prepared with questions at each visit.
Joined: Jan 2016
Name Kathy- known as Soup on
Name Kathy- known as Soup on here
type of cancer: clear cell
Grade and stage: 3C grade 3
Date of diagnosis: August 2015
Treatment: robotic hysterectomy, 5.5 weeks external radiation, 3 internal(brachytherapy ) 6 rounds of carbo taxol chemo
Where treated : Illinois cancercare Peoria, illinois
outcome: all clear with my next appointment in a week- neuropathy in my feet- gastrointestinal issues from who knows what for sure radiation, chemo, or numerous abdominal surgeries. Overall I’m feeling good and enjoying life and praying NED continues
Joined: Jul 2017
Name/Nickname - Hopeful
Name/Nickname - Hopeful/Sandra
Type of Cancer -UPSC
Stage and Grade - 1a, Grade 3
Date of Diagnosis - August 2017
Treatment - Robotic Hysterectomy after having a Hysteroscopy, Chemo 3 rounds of Carbo/Taxol
Where Treated - The James/OSU Medical Center, Columbus, OH
Outcome: Side effects set in after 3rd rounds, since then neuropathy has subsided. NED to date, just had my 3rd three month check-up
Anything Else: Know your body! As soon as I spotted I called my doctor and had an appointment the next day. Waiting is the hardest and not knowing til all results come back. I am fortunate that I have had and continue to have great doctors and medical support where I live. I stay current with information, the support has been wonderful on this site. I joined after I was diagnosed. Really has helped me especially when I was getting ready for my first chemo! All you ladies are the BEST!
Joined: May 2011
Present!
Name or Nickname: Fayard
Type of Cancer: Clear cell, Adenocarcinoma
Grade & Stage: Grade 3, Stage 2
Date of Diagnosis: December 2010
Treatment: 18 treatments of Carbo and Taxol, Radical Hysterectomy
Where Treated: San Diego, California
Outcome: NED ever since, thanks to God!
Anything Else: I became vegan, ever since the diagnosis. Even though I did not experience any side effects during treatment, I now have a little arthritis and osteoporosis. I exercise to control both. Three years after being diagnosed with Osteoporosis, decided to take meds, but I just stopped due to serious side effects: reflux (possible esophagus damage). I love and pray for all of us every day!
Joined: Jan 2016
Roll Call
Name or Nickname: Takingcontrol58
Type of Cancer: Endometrioid Adenocarcinoma
Grade & Stage: Stage 3b, Grade 3 (had spots on ovaries and small tumor on outer rectum <1 cm.
Cancer advanced to Stage IV two months after surgery (mets on liver, spleen, outer rectum; nodules
on lungs, spleen and outer colon). This was before chemotherapy. Cancer can grow very fast.
Date of Diagnosis- October 2014 with D&C; endometrial biopsy in September was partially conclusive
Treatment: Total Hysterectomy and exploratory laparatomy and 6 rounds of Taxol/Carbo.
Added metformin, 45 supplements, lost needed weight, started to exercise every day, eat mostly
organic, eliminated almost all sugar, processed food and alcohol, take one low dose baby aspirin each
day. I used an integrative approach to address all my own health issues as well as targeting the processes
involved in the growth and spread of all cancer (cancer stem cells, angiogenesis, autophagy, inflammation).
Where Treated: Lenox Hill Hospital, NYC (hysterectomy); Memorial Sloan Kettering (chemotherapy)
Outcome: In partial remission by March 2015; in total remission by August 2015. Have remained
NED ever since.
Anything else - I thank God for my miraculous turnaround and today assist other cancer patients in their journey.
I believe the integrative treatment approach (minimal standard cancer treatment) and alot of complementary
treatment is the only way to heal advanced or metastatic cancer for the long term. You have to work hard at
healing and preventing cancer every day. I am amazed at how my integrative plan has made me healthy and
full of energy.
"Some people dream of success, while others wake-up and work hard at it." Winston Churchill
Joined: Aug 2018
Hi Taking control,
Hi Taking control,
Very interested in your intergrative approach. Are you being treated by a functional medicine doctor? What supplements do you take?
Thanks so much
Denise.
Joined: Jun 2015
roll call
Name or Nickname: Cindi
Type of Cancer: UPSC
Grade & Stage: 3 / 1A
Date of Diagnosis: 5/2015
Treatment: Surgery, Chemo, Brachytherapy
Where Treated: Moffitt in Tampa for surgery and radiation. Florida Cancer Specialists for chemo
Outcome: Currently NED. I just "graduated" to 6 month check ups!
Anything Else: I have always been a positive person and that served me well going through this journey. I wake up happy and grateful every day. Some residual neuropathy in my hands and feet. Some days they hurt and others days they don't. It isn't bad and was worth it to tip the scales in my favor. We have lost so many of our friends that started this journey about the same time that I did and I have struggled lately accepting that loss. I'm glad to see the support from our new members for each other as well as those that continue to help that have been members for a long time. I'm hopeful that I'll get back to that support role soon! Love and Hugs to All! Cindi
Joined: May 2016
Name:Janae
Name:Janae
Type of cancer: MMMt stage 2 grade three
After hysterectomy the MMMt wasnt as prevelamt as they thought after biopsy but was srill trested as that type of cancer
When diagmosed: May 2016
Where was treatment: Utah
Treatment: after much discussion and learning, i was treated with 6 rounds of chemo and three bracytherapy treatments.
Oitcome: i have beem NED since then with uterinr cancer. A few months ago i was diagnoced with two spots of skin cancer. I was lucky and just had a couple of proseedures to remove the cancer. Easiest cancer to get.
Any thing else: i have now had 3 cancers and am still hear.c
I'm here!
I'm Nancy, have grade 3, stage 3III. I was diagnosed in August 2015, had robotic surgery (all out) in Nov of that year. I'm being treated at Methodist Hospital in Omaha Nebraska. After 6 cycles of Taxol/Carbo (or at least tried to do both), I got to stop treatment. My doctor said to take a summer vacation, and I guess I'm still on vacation! He doesn't do scans, or blood work, he said he'll know when/if it comes back by symptoms. I know, it sounds strange and risky to some, but I don't live in fear over false news. I feel fine. My favorite saying that I live by is Crazy Brave, Wicked Strong (thanks to Suzy Toronto)! Hugs
Joined: Dec 2017
MrsBerry
MrsBerry
endometrioid adenocarcinoma, grade 1, stage 1a
diagnosed December 2017
treatmenr: surgery
where: Johns Hopkins
outcome: NED
My dear husband received a Dx of prostate cancer one day after my own Dx, so we are walking the cancer path together. My gyn onc assures me there is a very low risk of recurrence, but I had a very low risk of uterine cancer in the first place, and I still got it. While I HATE cancer and all the misery it brings, I am grateful what I have learned through this experience: I learned to ask for and accept help from others. I think I have more compassion, gratitude, acceptance, hopefulness, patience. I am forever grateful for the support, love, hope, and compassion I received on this board, I continue to follow your journeys, and though I may not post much, you are all in my thoughts and prayers each and every day.
Joined: Feb 2017
well wishes
I hope your husband is doing well too!
Joined: Dec 2017
Thank you, Cass, he is slowly
Thank you, Cass, he is slowly recovering from his radiation and hormone therapy. I am starting to see flashes of the old, cheerful Mr. Berry, who has been MIA for quite a while.
Joined: Aug 2017
I'm here too ;)
Grateful for this board!
Name or Nickname: Stacey
Type of Cancer: Serous and clear cell histology
Grade & Stage: Stage IV Grade 3
Date of Diagnosis: May 2017
Treatment: Radical Hysterectomy (robotic)
Sandwich Therapy: 3 carbo/taxol, then 52 full abdominal radiation and 3 brachy, then 3 more carbo/taxol
Where Treated: Virginia Beach, VA
Outcome: PET=NED; however, CA125 rising for the last 2 chemo a every month after (total-6)
Anything else: I will be making a decision on July 13th, when I see my doctor for the next port flush and CA125 results. I can't see waiting for a tumor to form.
Joined: Apr 2013
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!
Joined: Jun 2016
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?
Joined: Apr 2014
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!
Joined: Apr 2016
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!
Joined: Jul 2018
Roll call
I am new
Joined: Aug 2017
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.
Joined: Mar 2016
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.
Joined: Feb 2017
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.
Joined: Mar 2011
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.
Joined: Feb 2016
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.
Joined: Oct 2009
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!
Joined: Aug 2012
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!!
Joined: Apr 2011
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.
Joined: Dec 2014
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.
Joined: Nov 2016
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!
Joined: Jun 2018
derMaus
I agree with you completely!
Take care
Joined: Oct 2015
I agree 100% with Bobbi!! I
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!)
Joined: Mar 2013
B, it is a great idea to go
B, it is a great idea to go back and update our About Me page. I have gone back every now and then, and have read others who have as well. I will make it a point to do this as you are correct how it helps others. Heck - even if people said - I" am not going to post here anymore" it would let us know if people didn't want to come back anymore.
HUGS my friend!
Joined: Feb 2017
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
Joined: Nov 2016
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 !!
Joined: Apr 2011
About me page updated
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
Joined: Nov 2016
I remember when you got the
I remember when you got the tattoo!! That makes me happy for you and me both, 'cause it was quite awhile ago. Congrats!!!
Joined: Jul 2018
Roll Call
Name or Nickname: BluebirdOne
Type of Cancer: adenocarcinoma endometrioid, papillary serous
Grade & Stage: Grade 3 until I get staged after surgery 7/26
Date of Diagnosis: 7/12/18
Treatment: Surgery for hysterectomy, I won't know anything else until after that is completed
Where Treated: I am going to The Mayo Clinic in Rochester
Outcome:
Anything Else:
Joined: Oct 2015
Please keep us updated,
Please keep us updated, Bluebird, after your surgery. There is a wealth of information on this board from women who were done with treatment after surgery to ones who are being treated as a chronic disease and everyone in between.
Good luck with your surgery!!
Love,
Eldri
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