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Let's do a roll call!

EZLiving66's picture
EZLiving66
Posts: 1346
Joined: Oct 2015

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

BluebirdOne's picture
BluebirdOne
Posts: 195
Joined: Jul 2018

I had surgery at Mayo in Rochester on 7/26/18. The full monty done robotically. Happily, I healed quickly and feel ok.  I was staged at 1a, Grade 3 serous, with LVSI. Negative for Lynch and negative for Her2. I have had 2 out of 4 chemo Carboplatin, and Paclitaxel, and am scheduled for 3 rounds of brachytherapy next week followed by the 3rd chemo. I am cautiously optimistic. The chemo has given me mild neuropathy in both hands and one foot, but the joint and muscle pains were the worst for me, the nausea was minimal.  One week after the last chemo I am slowly feeling better. I chose Mayo and would highly recommend their program. They have exceeded my expectations and my cancer team is supportive, informative and caring. 

Armywife's picture
Armywife
Posts: 297
Joined: Feb 2018

Bluebird, I encourage you to ice those hands and feet during chemo.  It really did save me!

BluebirdOne's picture
BluebirdOne
Posts: 195
Joined: Jul 2018

Thank you for your comment. They gave me ice mits last round of chemo and I will have them again as well as on my feet next time. I think it has helped the neuropathy from worsening. 

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Name or Nickname: Lulu

Type of Cancer: Endometrial adenocarcinoma

Grade & Stage: Stage 1A Grade 2,   four months after hyster developed mets to lungs, hips, spine and ribs

Date of Diagnosis: June 2017

Treatment: DaVinci total hyster, 26 nodes (neg), developed hip pain cancer had spread, put on hormone therapy (megace / tamoxifen alt) for 2 months, didn't help PET scan showed mets had spread further!! Chemo of 6 cycles Taxol / Carbo, waiting to hear what next steps are. Another PET end of Sept.

Where Treated: Melbourne for hyster, Vero Beach, then Moffit Cancer Center in Tampa, now back to Vero Beach

Outcome: Partial remission after chemo. Had excellent result with a lot of lesions gone or decreased in size. Bone pain so much improved. Waiting to hear next steps. Doc has consulted with other Gyn/Onc and all have differing opinions. PET scheduled end of Sept to see how things are going.

Anything Else: Did have a reaction to Taxol but with increased decadron and slowing down the infusion none further. Have some neuropathy in both toes but otherwise thankful to be virtually painfree from the bone mets. Hoping the next couple months I can knock out the last remaining lesions.Taking care of my 'internal envirmonment' and have also changed my eating habits to all organic and no sugar. Exercise every day and taking Metformin 1000mgs twice daily. Faith is also a big part of my life and thankful for everyday. 

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

Name or Nickname: Tammy aka LadyMox

Type of Cancer: Endometrial  cancer, Metastatic adenocarcinoma.

Grade & Stage: stage IVB, Metastatic. Biopsy showed mostly stage 2 with a small pocket of 3. Will know more after surgery.

Date of Diagnosis: Late August 2018

Treatment: Been deemed the chemo/surgery/chemo route. My thirdthird  of carbo/Taxol is in 3 weeks.

Where Treated: Roswell Park. Buffalo, NY USA

Outcome: After 1st chemo before second my CA125 dropped from 120.9 to 36, a good but not definite sign.

Anything Else:  I'm 42 years old. I have a tumor the size of a grapefruit over my right ovary. Had 3.2 ounces of fluid taken out of my abdomen.

pato58's picture
pato58
Posts: 98
Joined: Jun 2018

Did they ever mentioned why they opted for chemo before surgery?
Have a good weekend Smile

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

Not really but I think they we're hoping to shrink the large tumor, or maybe because they suspect I'm stage 4 they wanted to see how it reacts. With my CA125 going down a lot, hopefully it is indeed shrinking. Mostly my growth is over my ovary but there might be a small one on my adrenal gland over my kidney they seem to suspect. I'm sort of hoping the tumor shrinks on my ovary and the other remains stable so maybe just maybe I'll be a high stage 3 instead of 4 when it's all said and done. Still suppose if the one on my adrenal gland shrinks that would be good too even if I'm stage 4.

wolfera
Posts: 46
Joined: Sep 2018

Nickname: Theen

type: adenocarcinoma 

stage/Grade: Grade 1 at initial d&c biopsy

date diagnosed: 9/27/2018

treatment: don’t know yet. I meet my GYN onc on Tuesday so we will see

where treated: starting at Christiana Care - Helen Graham Cancer Center (Newark, DE) & considering a 2nd opinion at UPenn

anything else: well, it’s only been 3 days so it’s very fresh for me. I’ve had breakdowns repeatedly and am struggling to wrap my brain around this. I’m 37 and thought I was too young for this. I now know that was foolish thinking. I know more positive days will come and I have to pull myself out of this dark place. I’m hoping that after my appointment on Tuesday I’ll have more direction. Thank you to all of you have already been so supportive!!

pato58's picture
pato58
Posts: 98
Joined: Jun 2018

We are actually nearby. I live in South Jersey and had the operation at Cooper-Anderson with Dr David Warshal. It was a robotic DaVinci method. You are very young, indeed, only 2 years older than my son.
Just write here when you feel down and any of the ladies and/or I will help you through this.

wolfera
Posts: 46
Joined: Sep 2018

Thank you! I feel down pretty much all the time. I’m trying to be positive, but’s it’s been tough. do you have any experience with UPenn?

CheeseQueen57's picture
CheeseQueen57
Posts: 807
Joined: Feb 2016

I am treated at Fox Chase but my oncologist, Dr Laine Martin recently moved to Penn. 

pato58's picture
pato58
Posts: 98
Joined: Jun 2018

This is funny, I just wrote about you in my response below without checking your comment Wink

pato58's picture
pato58
Posts: 98
Joined: Jun 2018

but we all know UPenn's reputation and you can certainly consider it for a second opinion.
One of the ladies here CheeseQueen57 went to Fox Chase and she also considered UPenn. 
You may also be not far away from MtSinai Medical Center, New York, NY ?
Take care

wolfera
Posts: 46
Joined: Sep 2018

Thanks for the feedback, ladies. I’ve been narrowing down options all weekend. So I have my initial appointment on Tuesday with a GYN onc at the Helen Graham Cancer Center. The bonus is that it’s only 15 min from my house. I’ve heard a lot of positive feedbac, but also some negative. I’m originally from Baltimore and most of my family is there. After mulling it over with my husband, I think I’m going to go to Hopkins. It’s not that close, but we have a lot of family and friends in the area we can stay with...

DonnaA
Posts: 12
Joined: Aug 2018

Name or Nickname: Donna

Type of Cancer: Carcinosarcoma 

Grade & Stage: 1B/3  Grade 3 they said they consider me bordline since the tumor was so large and 1-2mm from leaving the Uterus plus I am LVI positive 

Date of Diagnosis: 8/18

Treatment: 5 weeks external radiation, 3 Brachytherapy an have am scheduled #2 of Taxo/Carbo which will probably be pospobed because platelets are 55    Also had Neulasta 

Where Treated: Arizona Oncology 

Outcome: last Pet Scan 10/18 was NED

Anything Else: had severe Radiation Cystitis from Radiation   For me Radiation was much worse than the Chemo........so far! 1st Chemo  mild nausea, body aches and pains, diarrhea and of course low platelets and neutropenia   I normally run low platelets in the 90’s and if they wait till my platelets are in the 90’s it’ll be 4-6 weeks before I can have chemo  after radiation it took a moth to go from 75 to 95   Wonder how well chemo works only getting it every 2 months  

 

 

EZLiving66's picture
EZLiving66
Posts: 1346
Joined: Oct 2015

I only made it through three chemos and I'm still NED from Stage 2, Grade 3 UPSC. No radiation either. Sure hope you can keep those platelets up!!

Love, 

Eldri 

Ribbons's picture
Ribbons
Posts: 73
Joined: Jan 2019

Name: Cheryl, age 66. I had stage 1A grade 3, clear cell with some serous, 22 lymph nodes taken, all clear but slight LVSI noted. Dignosed in August 2018, total hysterectomy on Oct 1st. Robotic assisted. I have always been healthy before this. Just completed 6 rounds of Carbo/Taxol and going for 3 brachytherapy treatments starting this Thursday. I go to an oncology gynecologist near Portland, Oregon . She did my surgery at Providence St. Vincent’s Hospital and the cancer treatment center is right next to that, called Compass Oncology. I would like to find others on here from Oregon or at least the West Coast, seems there aren’t many from here. Extra things: I am blessed with close supportive adult kids, a good friend for a husband, and my two horses who force me to stay active. 

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Names- Soup52 with real name Kathy

diagnosed August 2015

grade 3 clear cell- stage 3 C

treatment- robotic hysterectomy Oct 2015- external radiation 5 weeks- three internal, 6 rounds or carbo/taxol chemo with treatment ending July 2016

results- so far cancer free but I do have intestinal issues and some neuropathy in my feet

i have yearly ct scans with my next one in April with a new gynechological oncologist as mine moved back to Texas

i have been followed every 3-6 months with ca 125 and exams.

i don’t know how I’ve been so lucky with my high grade and stage, but I’ll take it. I’m now 66 years old

treatment at Illinois Cancer Care, Peoria, Il

 

 

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