Let's have a roll call!
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Hi, Yettiyetti said:Roll Call
Hi everyone, my name is Yetti! 12/29/1961. I LIVE IN HOBE SOUND FLORIDA, SOUTH, EAST COAST
June 2018: DX WITH STAGE IV B FIGO 2 ENDOMETRIOD ENDOCARCINOMA
IN EARLY JUNE 2018/ GYN ANNUAL EXAM, POLYP IN CERVIX, REFERRED TO GYN ONC
TESTING DONE CT & PET SCANS/ HYSTERECTOMY RECCOMENDED, RESULT FROM SCANS: PELIVIC TUMOR 12CM, NODULES IN OMENTUM AND LUNGS DX WITH STAGE 4 B FIGO 2/ ENDOMEDROID ENDOCARCINOMA/ CHEMO : CARBOPLATIN & PACITAXOL AUG-DEC 2018 HAIR LOSS 2 WKS AFTER 1ST CHEMO, HAD HEAD SHAVED BALD ?? DEVASTATED BC BEING BALD WAS UNACCEPTABLE TO ME, FELT IT WAS IMPOSSIBLE TO HAVE A QUALITY OF LIFE BEING ?? I HATED MY LIFE WANTED TO BE LEFT ALONE TO DIE, I DIDNT WANT CHEMO! I WANTED THE HYSTERECTOMY AND TO BE FINISHED WITH TREATMENT AFTER THAT! i HAD A BREAK FROM CHEMO IN EARLY DEC TO MID JANUARY FINALLY HAD HYSTERECTOMY, DEBULKING LAPROSCOPIC ROBOTIC HYSTERECTOMY/ BC CHEMO WAS EFFECTIVE SHRUNK TUMOR AND NODULES, I WAS READY TO BE DONE WITH ALL THIS, THOUGHT I WAS DONE WITH CHEMO AFTER HYSTERECTOMY! I WAS TOLD I NEEDED 3 MORE CHEMO, I WAS ? MY HAIR HAD STARTED TO GROW IN DURING BREAK/ PEACH FUZZ, I HAD CARBOPLATIN/PACITAXOL AND AVASTIN , HAIR FELL OUT AGAIN ! SO BALD ?? AGAIN ? I HAD A PET SCAN BEFORE RESTARTING CHEMO ! CLEAR SCAN! ONC STILL WANTED ME TO DO MORE CHEMO! ONC SUCKED AT COMMUNICATING! I ASKED HIM HOW MANY MORE CHEMOS WAS HE PLANNING FOR ME ,HE SAID " WE ALREADY DISCUSSED THAT AND WOULD NOT ANSWER ME. MARCH 29 2019. LAST CHEMO ! APRIL 2019. 2ND OPINION @CANCER TREATMENT CENTER OF AMERICA NEWNAN GA. THEY DID THEIR OWN CT SCAN LABS CA125! DECLARED NED APRIL 18 2019 ! PRESCRIBED LETROZOLE/ SIDE EFFECTS: WEIGHT GAIN, SHOULDER NECK STIFFNESS/ LEG, JOINT KNEE STIFFNESS AND HAIR THINNING ! SO AFTER WAITING A YEAR FOR HAIR TO GROW BACK! ITS THIN AND STRINGY, I TRIED TO LET IT GROW OUT BUT IT LOOKED AWFUL! SO NOW I HAVE TO TAKE LETROZOLE THAT THINS THE HAIR I WAITED A YEAR + TO GROW BACK IN/ IVE GAINED 20#s OF THE WEIGHT I LOST DURING CHEMO. I HAVE TO TAKE LETROZOLE TO HOPEFULLY AVOID A RECURRENCE! HOWEVER, IF I DO HAVE A RECURRENCE I WILL NOT DO CHEMO OR RADIATION OR ANY OTHER TREATMENT AGAIN ! I WILL BE 60 IN DEC 2021! I WLL BE NED 3 YEARS ON APRIL 18 2022 ! IM HAPPY TO BE NED BUT IT FEELS LIKE THIS CANCER HAS TAKEN AWAY THE LAST FEW YEARS OF MY 50's I WAS 57 WHEN I WAS DX! CANCER HAS CAUSED ME TO LOOK 8O AND FEEL 80! IM AN EMPLOYEE OF MARTIN COUNTY SCHOOL DISTRICT, I HAD RETURNED TO WORK 5 MTHS AFTER MY LAST CHEMO! HARDEST THING IVE EVER HAD TO DO! RETURNING BACK TO WORK WITH VERY SHORT UGLY HAIR! LOW ENERGY EXHAUSTED AND EMOTIONAL MESS BY WED IN A GIVEN WEEK ! I STILL HAVE MY PORT BC I HAVE A DIFFICULT TIME WITH BLOOD DRAWS I ALWAYS HAVE, EVEN BEFORE CANCER ! I NEVER HAVE SEEN A SHRINK OR COUNSELOR BEFORE IN MY LIFE UNTIL CANCER IM ON AN ANTIDEPRESSANT AND MED FOR ANXIRTY WHICH IS HELPING ME ! I AM FEELING BETTER ABOUT THINGS LATELY! CANCER THE GIFT THAT KEEPS ON GIVING!
I too think your kitty is just beautiful. Love those pink ears. My cow kitty (black &white) has pink ears and nose.
I am celebrating your news of NED! How hard it is for you to work while going thru all this treatment. It saddens me you are exhausted by Wednesday each week. I take Lorazepam and it helps me in my anxiety and settles my colon. This is my second cancer. The first being Lymphoma of the colon in 2013. This is very different treatment and prognosis than the first cancer and it is mind blowing how much it effects me physically and emotionally by comparison. There is just something unique about our lady parts and our dignity, right?
I would include hair in that category, too. My hair used to be my pride, red and thick. It was what everyone commented on. It turned grey as I aged but was still thick. Now after 3 months post chemo, I call it crazy punk rock hair. It is curly and straight, all different lengths and just plum wild. I wear a large bill type hat. I just could not get used to a wig, too hot, too fake on me. I am so glad Fall is coming soon so I can put on my denim bucket hat.
Give your kitty a scratch behind her pink ears and yourself a virtual ((HUG))
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I just thought it was time to roll call. I was initially endometrial intraepithelial neoplasia. Changed to serous endometrial intraepithelial carcinoma by the Gyne Oncologist pathology. No residual malignancy in the hysterectomy specimens. Elected no treatment. NED almost 3 1\2 years.
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Shall we start a new topic as there are 5 pages or add to this one?
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Sure. I was just testing the waters.
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Roll Call
dx 2018 June endometerial endocarcinoma stage 4 B. After CT and Pet metastasized to lungs and omentum and 12cm tumor in pelvis. Age 57
Aug -Nov 2018 6 rounds of Carboplatin/ pacitaxol.
dec 2018. Break from Chemo.
Jan 16 2019 Laproscopic robotic hysterectomy/ went well recovered. Quickly.
feb 2019. Pet scan that showed all areas clear of metabolic activity.
Feb 11. 3 more chemos. With Avastin. No appetite.
2nd opinion. Due to lack of communication from local onc. CTCA. Appt made
March 29 2019 last chemo !
1st appts at CTCA April 15-18 2019 Labs Ca125 , Ct scan, pelvic exam
declared NED due to results from ct scan and ca125
April 18 2019 Prescribed letrozole 2.5 mg
In April of 2022. I’ll be NED. 3 years. And will be 60 Dec 29 2021
It has been a tough journey,! I’ve returned to work 5 mths after. Last chemo. Full time at an elementary school, returned in Aug 2019. Hardest thing I have ever done ! Took me until January. 2020 To get into the grove of things. Then in March Covid. Hit ! Had to convert to working from home! Ugh. Luckily it was only. 2. 1/2 mths.! Still trying to get this hair to grow back in , still short. And thin ugh. Which is caused by the Letrozole!
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THAT is a wonderful post to hear. Thanks for sharing! So happy for you.
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So I am late to the roll call. Deb from Utah here and Happy Friday to all! Just one more shopping weekend until Christmas I am looking forward to having my kids and mom here for the holiday!
Diagnosis: endometrioid adenocarcinoma grade 3, stage 3c2. 95% invasion and cancer in 5/13 lymph nodes including 2 para-aortic. Tumor Mutation burden not high—6–but am dMMR.
Treatment: On-going. Radical abdominal hysterectomy 1 Dec 2020. Started with 6 taxol/carbo and 3 intravaginal brachytherapy. CT after chemo showed numerous nodules in my lungs; biopsy confirmed metastatic EC. Started immunotherapy with Keytruda for 2 rounds, then dostarlimab. Treatments interrupted by small bowel obstruction requiring surgery. Worst experience of my life was having NG tube inserted. Due to adhesions from previous surgery. Just completed 3/5 SBRT treatments to hopefully destroy my largest tumor in the pleural space of upper left lung. No side effects besides fatigue.
Current status/ still fighting after a year. Cate is now palliative so I will live with cancer. I feel pretty good all things considered. I had a ureter damaged during surgery that requires a stent but my kidney is losing functionality—22% instead of 50%. Likely cause of high blood pressure.
What have I learned or want to share? I’ve had to adjust my expectation of normal. I am still very active and hope to do another full IM but it’s no longer about excellence but instead perseverance. I still work full time as a senior program manager for a defense firm. I have had to scale back my efforts there and my boss and coworkers have been great.
Hugs to all!
Deb 1
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Deb 1 - I am so happy to read your roll call! I have been looking for you, and wondering how you are doing. I wish you lived nearby so I could go on a hike with you, or a short walk to the waterfalls or something! I am so glad you'll be spending Christmas with your mom and daughter, and that you're shopping. I have gone all out this year for Christmas.
My husband is kind of a scrooge, but I had a word with him about our last few years. He had a terrible falling accident a few years ago, and broke his neck in several places--hairline fractures all over the place, and at the C2, which is high up in the neck. The surgeon said that if he'd been ten pounds heavier, or up one more step on the ladder, he'd likely have died. It's a miracle he didn't become a quadriplegic. Anyway, there was that, and then last year, we had a rough time with wildfires nearby, thinking we are going to see our home burn up and evacuating everything but the kitchen sink into our car and truck--dogs, cats, cattle, photos, passports.
My husband's ex, mom of my precious stepkids, died in October 2020. Likely Covid.
Then, there was cancer all year for me this year.
So, Christmas is one big, happy red and green celebration this year! Tree! gifts! decor! my santa collection! My Charles Dickens village! My nativity scene! Christmas lights! (no ladders though, ha ha).
Now, let's get down to brass tacks. Thanks, CMB, for your set up, which I'm using.
Type of Cancer: Endometrial Adenocarcinoma
Grade & Stage: Grade 1, Stage 1 B (1 C Figo 1988, bc of deep myometrial invasion--83% and LVSI)
Date of Diagnosis: Formal DX mid February of 2021, but I knew Jan 15th 2021 owing to reading pathology reports my primary got back from a pap smear that showed atypical glandular cells, endometrial origin. I understand I was VERY lucky that my uterus was "leaking" cancer cells. Otherwise, I'd be completely in the dark, and undiagnosed. I shudder to think...
I was 61 years old at diagnosis, and recently turned 62.
Surgery: February 2021 D & C, Polyps removed, biopsies under general anesthesia. March 24th, 2021 - Laparoscopic radical hysterectomy with bilateral salpingo-oophorectomy. Partial vaginectomy. Sentinel lymph nodes removed, and clear.
Treatment: Following surgery, five HDR brachytherapy treatments.
Where Treated: Initially, Compass Oncology West. Following surgery, I transferred all treatment to Oregon Health Sciences University, including my radiation treatments.
Outcome: NED per last check up in October. I'm supposed to get checks every two months, and so far, have only had visual checks to my vaginal cuff which makes me a bit nervous. I cancelled my check up on Dec 2nd bc I was exhausted. I fluctuate between optimistic and cheerful to moody and gloomy. Owing to some upsetting medical experiences, I have almost no faith or trust in my NED status. I keep waiting for the other shoe to drop!
I am down seven pounds since surgery, and am now on Metformin and also Wellbutrin. My thyroid is not good right now, and Levothyroxin med been increased to 150 mcg. Hope I can continue moving up and onward! Thanks to everyone here.
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And Thank God for that. We all need you. You are extremely important to all of us. I hope you know that, but if you didn't, now you know my feelings, at least! You are everything to us.
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cmb that is FANTASTIC! I hope you were swinging from the chandeliers! hugs my friend. NoTime
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Type of uterine cancer - Stage & Grade: MMMT-E (aka carcinosarcoma) of the uterus, Grade 1A, no lymphovascular system involvement, but positive washings. Diagnosed 9/15/21.
2. Treatment: Surgery to remove everything: uterine resection aka removal (a famous doctor and activist on avoiding morcellation, Dr. Noorchasm (sp.), spouse of DR. Amy Reed, more on them later, reminds us "hysterectomy" aka the source of "hysteria", is a pretty anti-woman word, more praise of them later) plus removal of cervix, ovaries, fallopian tubes, some or all of omentum, not sure, plus removal of many lymph nodes. Then 6 rounds of carbo taxol every 3 wks starting 3 1/2 wks after surgery. Between rounds 3-4, 5 brachytherapy radiation treatments. Next chemo (#5) is 1/12/22. After chemo, considering Keytruda--already missed one study because local oncologist lacks knowledge, or aromatase inhibitor. Will do pelvic radiation if needed.
3. Current status: NED per CT scan in December. Also NED through two rounds of bespoke blood test formulated based on tumor assay. Highly regarded expert on my cancer stated CA 125 doesn't work for uterine cancer and is zero help for MMMT, but my local gyn onc uses it. Of course any blood tests are non-invasive beyond the poke.
4. Anything else you'd like to share or what you've learned from this journey, etc.: Read these blogs! That's how I knew to get my tumor assayed (mapped). My local onc didn't know to do that even though it's routine in many places. If you have a rare cancer as I do, and the time, money, and will, make sure you find the experts in your cancer nationally and even internationally, esp. now that telemeds are more available. Your local team will say they're "just as good" and "follow national protocols", that "those big universities will treat you like a number"--nope. Get there early, get there late--sooner or later esp. if the prognosis is or becomes grim, you'll want to pull in the experts on YOUR tumor. (Again, this is is for rare cancers like MMMT, aggressive and bad news, resistant to chemo; I'm not talking about garden variety uterine cancer, often curable by a uterus removal alone.) Thank you, blog posters, for shaking sense into me, and giving me options I would never have learned of in backwater Austin.
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Hey SSM,
Thanks for responding! I won’t give my whole history here but I am currently on the immunotherapy drug dostarlimab/Jemperli to treat spread to lungs that occurred during chemo. I have been on this drug since June last year; started with Keytruda —My tumor is borderline MSI but definitely dMMR hence the immunotherapy. Although my lung tumors grew quickly at first we reached a stable state in August. I am curious about the use of Keytruda when you are NED; wouldn’t that indicate effective treatment so Immunotherapy wouldn’t be indicated? I’m asking because I’ve read on other boards that cancer patients were blocked from Keytruda use because their bio markers suggested they wouldn’t respond and even after 7 years or more Keytruda is still expensive.
Glad to hear you are NED though! I do go to a top cancer institute in Utah—the Huntsman Cancer Institute—so have no complaints about care or questions on treatments but it sure does make a difference to have this resource nearby!
Cheers,
Deb 1
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Cheers to you too! I'm just looking hard at next steps, and don't want to wait patiently until the MMMT comes roaring back. Not saying I've been approved. This whole process drives me crazy. "We know a drug is likely to help you, but it's super-expensive so let's wait until your cancer comes back, which it probably will, at which time your odds go down". That stance IS starting to change--thank goodness! Mostly I'm just mad I missed out on a pending study that adds Keytruda to Frontline Carbo/Taxol for half the patients v. Carbo/Taxol plus a placebo for the other half. Re aromatase inhibitors ("AI") , my breast oncologist who I saw for general prevention/breast health given my uterine cancer (and lots of cancer in my family) recommended an AI. Not surprisingly she said tamoxifen was not an option since it can be a cause of MMMT. The biggest downside of an AI, Arimidex, Aromasin, or Femara (letrozole), is causing osteoporosis. I coincidentally had a baseline bone scan done right before my staging CT, and son of a gun, I had a little osteoporosis in my spine, and a little osteopenia in my hip. So at first I was against an AI. Now, though, I've seen people having some success with those in their fight against MMMT, so I'm looking again. If I do, I think I'll see an endocrinologist if necessary to go on bone building (?) preserving (?) infusions. Thoughts?
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Welcome SpringerSpanielMom,
Dr. Brian Slomovitz, https://www.msmc.com/doctor/brian-slomovitz/
"He holds a leadership position and runs the endometrial trials for the GOG Foundation (Gynecology Oncology Group, a non-profit organization funded by the National Cancer Institute), which works to transform the standard of care in gynecologic oncology. He is also a global and national principal investigator for clinical trials meant to improve the way we treat gynecological cancers in women."
A valuable resource, if needed.
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@Bluebird, thanks!
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Kelly
30s, Newark, DE, USA
Stage IV Uterine Leiomyosarcoma. Six rounds of chemo with five days in hospital every the weeks. Soon 4-5 sessions of radiation therapy for brain lesions/metastasized. Current status: limbo. I feel so stuck, can't move forward in life, NOT going back, can't drive and need to be monitored round the clock fors eizures. Read a statistic that my 'unusual' cancer which impossibly rare to brain has a survivability of 44.55 days after diagnosis to live.
I am keeping positive each day yet living in this constant limbo land. There's physical, mental and emotional struggle. Looking for a mentor who had been through my similar diagnosis, young adult survivor and how they are surviving and/or living after?
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Hello Kelly. I am going to post over on the thread you started.
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Hi Ladies,
I am new at this here so bare with me. I am currently almost a year post surgery. I was diagnosed with ENDOMETRIAL ADENOCARCINOMA, ENDOMETRIOID- TYPE, FIGO Grade 1. I was 37 years old and married for 9 years with no children. The doctor that diagnosed me was very sad to let me know that what one of the options would be to get a hysterectomy done. This was very hard for me to take in due to always wanting to be a mom. However I am also thankful that I was given another opportunity at life. I was blessed not to need chemo or radiation after my surgery. And even though people might tell me you had it easy and it did not take your hair away or it did not take this I feel that it took I big part of me. It took the dream of one day being a mom of giving my husband a child. I will forever be greatful with God and with my doctor and all of his team. There are times where I still feel that I have not yet have overcome this yet. I hope that joining this group helps me. Thank you in advance.
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