Let's do a roll call!

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!

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!

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: 

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. 

BluebirdOne said:

Update

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. 

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

MrsBerry said:

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.

I hope your husband is doing well too!

Ardnasnit said:

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.

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. 

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.

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!!

wolfera said:

Nickname: Theen

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!!

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.

pato58 said:

Hey Theen

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.

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?