Let's do a roll call!

13

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,353 Member
    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

    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!

  • derMaus
    derMaus Member Posts: 558 Member

    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

    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!!!

  • BluebirdOne
    BluebirdOne Member Posts: 654 Member
    edited July 2018 #44
    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: 

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member

    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: 

    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

  • Lulu7582
    Lulu7582 Member Posts: 112 Member
    edited July 2018 #46
    Roll Call: New here

    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
    BluebirdOne Member Posts: 654 Member

    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

    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. 

  • Armywife
    Armywife Member Posts: 451 Member

    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. 

    Ice Ice Baby!

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

  • BluebirdOne
    BluebirdOne Member Posts: 654 Member
    edited September 2018 #49
    Armywife said:

    Ice Ice Baby!

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

    Ice

    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. 

  • Cass83
    Cass83 Member Posts: 151 Member
    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.

    well wishes

    I hope your husband is doing well too!

  • MrsBerry
    MrsBerry Member Posts: 102 Member
    Cass83 said:

    well wishes

    I hope your husband is doing well too!

    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. 

  • Denise66
    Denise66 Member Posts: 81 Member
    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

    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. 

     

  • Denise66
    Denise66 Member Posts: 81 Member

    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

     

    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. 

  • LadyMox
    LadyMox Member Posts: 56 Member
    Name or Nickname: Tammy aka

    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.

  • Ardnasnit
    Ardnasnit Member Posts: 29 Member
    Denise66 said:

    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. 

     

    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

  • wolfera
    wolfera Member Posts: 48 Member
    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!!

  • Fayard
    Fayard Member Posts: 438 Member
    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!

  • pato58
    pato58 Member Posts: 120 Member
    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!!

    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.

  • pato58
    pato58 Member Posts: 120 Member
    LadyMox said:

    Name or Nickname: Tammy aka

    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.

    Hi Tammy

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

  • wolfera
    wolfera Member Posts: 48 Member
    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

    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?

  • LadyMox
    LadyMox Member Posts: 56 Member
    pato58 said:

    Hi Tammy

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

    Not really but I think they

    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.