Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatm

unknown said:

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Patricia welcome to the site
Sorry to hear you story and that you are one the the same journey so many of us are on. I am sorry for the loss of your Precious canine girl. I know how devastating that can be. I am sorry you have no family, husband or children to help you through this journey. I hope a friend steps forward and can be a support for you. It has amazed me friends that I did not expect have been there for me. I understand the tears your are feeling, too. We all have had them. Some days are worse than others, but that is to be expected. Take it a day at a time. Your best attribute "your hair" will come back. It is hard to lose it. I lost all of mine before the second chemo treatment. I had three chemo treatments and then radiation. MY hair had come back before my 4th chemo, but fell out before my fifth treatment. Now it is back to wearing hats when ever I leave the house. But I know it is temporary. I think I miss my eyelashes more than my hair. A friend gave me a magnifying mirror to put on the eyeliner, and it really helped. It is pretty scary to see all the other wrinkles on the face though, so I just focus on the eyes. Feel free to vent or ask any questions you may have. There are so many questions when you are facing UPSC. Take it one day at a time, and enjoy each day. In peace and caring. HUGS to you.

linda66 said:

Frist time commenting
I had a robotic radical hysterectomy on May 26th after an original diagnosis of cervical cancer (caught via a pap smear) with no symptoms. After the surgery the pathology showed that I had UPSC, stage IIa. My gynecological oncologist surgeon recommended 6 rounds of chemo (carboplatin and taxol) and then vaginal brachytherapy. The diagnosis was quite a shock as it sounds like it has been for most of you. Finding the UPSC cancer network has been a "godsend" for me. All your comments, feedback, and sharing have been so supportive and informative. Although I'm reading up a lot on what's out there, I still feel I'm in the "learn as you go" program. I had my first chemo on July 8th. The first few days were the worst - had extensive left leg pain the next day. Then 2 days later I fainted several times along with throwing up. At the end of the day I ended up in ER and then was hydrated. I started feeling pretty good a few days later. Right now I'm doing my best to keep my hydration up and to eat the right things. For someone who is used to being on the go, it's been a challenge to go with the flow, but I'm learning fast. I am concerned about what happens as I get more chemo treatments and try not to think about that so much as to take each day at a time. I went to the ACS class on Look Good, Feel Better, which was very uplifting and positive. I am not looking forward to losing my hair, but am getting ready for that. Any tips would be helpful.
I live in the San Francisco Bay area and had just retired last March. So I appreciate being part of this dialogue.

Linda welcome to the site
Glad you found this site, so you can "learn as you go". Sorry you had such a hard time with you chemo treatment. I hope the next ones go better for you. Keeping hydrated is very important. It is hard to not have the energy you are used to having. I figure my body is telling me it is time to rest. I try to listen to it. Glad you found a Look Good Feel Better program. I too thought it was very helpful. Gsave great make-up tips especially for the eyes. When my hair started to fall out I wore a cap and then went and combed my hair every couple of hours to keep it from falling all over everything. I wore a cap to bed, to so I did not have hair in my face while I slept. I did not shave my head like so many did. I keep telling myself "it's only hair", but I do miss it. It will come back. Good luck with the rest of your treatments. Take care of yourself. In peace and caring. HUGS to you.

lindaprocopio said:

Warm (but sad) welcome to the latest sisters joining us.
I finished up my initial treatment protocol July 1st, and am trying to enjoy the 6-week break I have until my first monitoring tests, in blissful ignorance and complete optimism. So if I don't respond to each post, it is just a part of my attempt to think of myself as cancer-free and cured, for as long as I can, until some test shows me differently! But I did want to offer a warm welcome to each new sister that joins us here. And reach out to each of you with a big cyber hug.

I encourage you to use the SEARCH feature at the top of the thread to research questions that you may have on specific drugs or treatments that are proposed for you. (Just plug in key words like "brachy; radiation; EGFR, etc.) We have created a significant resource here of 'real time' personal experiences and recorded the combined internet research and oncologists' opinions of the growing number of women travelling this journey together. It is especially important to those of us with UPSC, where so much on the internet is terrifying. Please ignore ANY stats you read on UPSC that are older than 2 years, as things are changing rapidly for us, for the better. We have made an effort to post any new information on uterine cancer on this Discussion Board. I encourage you to do the same, so that this Discussion Board continues to be a comprehensive archived resource for those that come after us looking for answers, .....once we are all cured and too busy with our post-cancer lives to stop in every day!

ENJOY THE WELL DESERVED
ENJOY THE WELL DESERVED BREAK, LINDA. PRAYERS WILL CONTINUE TO COME YOUR WAY! KATHY

roll call

dear linda and other sisters,

i'm so grateful to have found this site, and think it's a great idea to do a roll call and see where everyone is. i'd certainly like to meet people. i have been following alot of the discussions, and feel like i'm getting to know some of the folks writing in. i'm new to writing my self: i'm maggie, age 67 (and grateful to have been very healthy up to this point), was diagnosed with upsc end of may, after several months of feeling abdominal pain, gas, bloating, having numerous cat scans and ultra sounds, blood tests that showed up absolutely nothing, until i insisted on a ca125 which was 191. finally got a endometrial biopsy, that was inconclusive. my (new) gyn thought i had precancerous cells. then a d&c that conclusively diagnosed upsc. i had a huge surgery a week later (it's been almost 7 weeks now), and am stage 4. the good news is the surgeon thinks he got all the visible disease--took out everything, and scraped off all the visible disease which had gone beyond the uterus, and in a little less than 1/2 the nodes he removed. surgeon thinks the surgery went very well, and that i am healing exceptionally well, so i'm glad about this. i am still having to take pain meds, however, but much of my energy is back, and i feel more normal again.

i met with the surgeon yesterday (i had postponed this meeting for 2 weeks because i just wasn't ready) who is adamantly recommending carboplatin/taxol for 6 cycles, as soon as possible. fairly standard. not recommending radiation, however, which i didn't get a chance to ask him about since our conversation was interrupted by an emergency phone call, and that basically was that. i do have a second opinion scheduled for monday for treatment options, so will presumably can ask more questions. then there's the referral to the medical oncologist who will be doing the chemo, so more opportunity to ask questions. the couple questions i also wanted to ask are if there are any statistics on survival for women who did not do chemo or radiation after surgery? or if just did chemo? anyone by chance know of such statistics?

i'm very gladdened by the mostly upbeat tone of these conversations; i myself veer from being hopeful to being resigned. i hasten to add that i would never expect anyone here to be always upbeat by any means.

i feel, like all of you, that i have everything to live for. a wonderful partner (domestic), a daughter who chose to have a baby (daughter)
on her own and is now 19 months, a son who married an african woman (he's white, she's not) and adopted her 8 year old daughter, and now also has a 3 month old son who just moved to the us., work that i love (i do psychotherapy), good friends, etc., and live in berkeley, california. i feel like i have everything to look forward to, so i'm still in some shock about this diagnosis and haven't quite processed it, if we ever do.

looking forward to hearing from you.

maggie

lindaprocopio said:

Any Stage IV UPSC Sisters should also read Ovarian Cancer Board
The way my oncologist explained it, with UPSC you have to go after any lingering cancer cells with as aggressive a treatment as your body can stand the first year following diagnosis. Your best shot of beating this is during your initial treatment protocol of surgery, chemo, and radiation, and you want to fight hard from the get-go. Because, he told me, once UPSC recurs, most oncologists stop talking about 'curing' recurrant UPSC patients, and will talk in terms of 'managing a chronic condition'. That's why I encourage anyone with a recurrance or that was diagnosed UPSC Stage III or IV, to also read the posts on the Ovarian Cancer Discussion Board. These 'teal warriors' with ovarian cancer ALL treat their cancer like a chronic condition and go in and out of chemo and remission over and over, year after year. There is much for us to learn from them, and their courage and optimism make the possibility of recurrance much less scary. My oncologist confirmed that UPSC is every bit as recurrent as ovarian cancer. That's the reality.

You asked about stats for not doing chemo or radiation following surgery. For UPSC Stage IV, I think I read that the 5-year survival rate without the additional treatments is a horrific 5%. You need to do that chemo. We want you around a LONG time!

I'm not surprised that they didn't mention radiation yet. My oncologists never looked ahead with me further than the next step. They may let you get through at least half of your chemo before talking about working in some radiation. As far as doing radiation, that is a decision only a radiation oncologist can help you make. His recommendation will be very customized to your particular cancer and based on where they think your cancer is likely to be travelling. I read that they only do pelvic or whole abdominal radiation if they are fairly sure that they can treat all of the remaining cancer cells/tumors in that region. If there are cancer cells in any organs that cannot be radiated without horrible side effects, they may pass on giving you radiation, or they may do focused radiation just to attack/shrink the tumor. (That's why most ovarian cancer patients don't get radiation unless their CT-scans are showing NED after their de-bulking surgery. There's no use doing radiation if you can't get all the cells, as it just comes back.)

questions re: discussion board
dear linda,

thanx so much for your response; i appreciate all of your thinking, esp. re: radiation. i actually did bring it up and the surgeon didn't seem to be pushing it at this point. i did ask if i didn't do radiation now, but needed it later, would it still be possible and effective, and he did say yes. i'm getting a second opinion with another gyn/oncologist monday, one of the few women in this specialty, and will ask her as well. my doctor was so hurried, and our conversation was interrupted by an emergency call and that was basically that. we left with plenty of unanswered questions. i will do the chemo, however.

one question re: this board: it's been a little difficult for me to navigate. i'd like to post on the upsc board especially, can i copy and paste my prior post, the one to which you replied? is it possible to delete a post once it's been posted (one's own, of course).? thank you, linda, no rush on this. i hope you're enjoying your break. (it's so confusing to me; i think you may still be on your break.) thank you again for doing so much research, taking the time to share what you learn, and in such a heartfelt manner. you're a real mensch!!

warmly,
maggie
maggie

unknown said:

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To Patricia -questions for Claudia
I had posted an indepth reply to your questions, laying out all of the things I do on a daily basis to try to slow or kill cancer cells, but before I could send it, it disappeared. Feel free to call me and I'll be happy to answer any of your questions with opinions I've developed over the last year and a half of health research.
947-517-9417.

As always, love and hope to us all,
claudia

I found your comment re nickel exceedingly interesting as I have a horrible reaction to nickle. Once my ear grew so large, I looked like a donkey. Another time my face got swolled to the size of a grapefruit when exposed to food cooked in a pan with nickle and allowed to sit for a few hours.

Look forward to hearing from you.

Can we do a ROLL CALL with everyone posting their name,
hello all
I am new here, got diagnosed with cervical cancer and was due to have a D and C, the week after this I could not get a hold of the doctor, so got worried and had a second opinion, this time it was worse, the specialist said I had uterine cancer and had to have a total hysterectomy june 15. after the operation was told I have endometrial cancer stage 4 b, and he added that this was the worst he had seen in a while, and survival rate is only 1 to 2 years with chemo. I dont like this diagnosis of course and this has shocked me as I have been a very healthy person.
after my first chemo treatment july 13th 14th I am feeling healthy with very few side effects. the worst was the white blood cell shot, got very tired and very sore.
I have been looking for anyone with similar diagnosis who has a success story, and have found none. I am worried about what is coming up. I am on a 21 day chemo schedule, was told over and over again to cut my waist length hair and finally did. it is still intact. wondering if I am just lucky with no side effects or it will get worse after each chemo?
any help out there?

lindaprocopio said:

Even my radiation oncologist said "Chemo is more important".
Initially my surgeon referred me to a radiation oncologist, as the surgeon felt I should have whole abdominal radiation. But the radiation oncologist told my husband "If this was my wife, I would want her to be getting chemotherapy now." So I had my 6 rounds of chemo first because they felt that was the most important of the 2 therapies. So, Maggie, don't worry about the radiation decision yet. Just get going on your cabo/taxol as soon as you are recovered from the surgery. My heart goes out to you because you seem so much like me, living a joyous life, and then caught by complete surprise by this awful diagnosis. I guess that is true of most of us.

Continue to be hopeful. Without hope it is impossible to enjoy the beauty of each new day. I have a lot of responsibilities and have taken steps to plan a succession strategy for my business if things don't work out the way I want them to. I've also re-prioritized my time so that I can 'make memories' for my grandchildren and build some type of supports (friends, family) for my husband, as we are everything to each other and I want him to be okay if I'm not here. But those are just precautions and not anything I dwell on. I will do my best to live on for another 30 years! But I am making sure that if I only have 5 years, then I will make 5 years be enough and am at peace with that possibility.

I leave for the beach tomorrow for a week. My grandkids and both sons are coming. My husband hates the beach and all the drama and hassle of having the whole family together in a small cottage, and isn't coming. He has been assigned the task of planning a fall vacation for the 2 of us anywhere he'd like to go. So I won't be posting until after August 1st, although I may go to an internet cafe to check on Deanna's test results.

Sweating bullets
After reading everyone's posts I was sweating it out that I had cancer. Was scheduled for a da Vinci (robot) assist vaginal July 22 and doctor panicked at the last minute saying I needed an endometrial biopsy after looking at other doctors records and if cancer he wouldn't do the surgery, I'd have to find an oncologist to do radical. About 9am July 21st the nurse called (we were sweating bullets as you could imagine) and she told me "no cancer". Thank God, went through with the surgery and am now recovering at home. I can't tell you how much you guys meant to me to be there if it had been positive as I really couldn't share or get information from anyone else except someone who had been there. Thanks for all the support and I will always keep you all in my prayers. Mary