CSN Login
Members Online: 8

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

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

We have so many wonderful new people posting and I have been so busy with treatments and trying to keep my head above water at work. I am afraid I haven't really welcomed everyone (I APOLOGIZE; you can't possibly KNOW how glad I am that you all have found us!), and I am having trouble keeping everyone straight in my poor chemo-brained head.

So could you each just post under this thread with the name you'd like us to call you, what your cancer diagnosis is (if you have it yet), and where you are in your treatment. And if you want to say where you live, that would be cool too. I'll start it off:

Linda Procopio:
Stage III-c UPSC, radical hysterectomy 10/10/09; just finished 6 rounds of carboplatin/paciltaxol (sp?); with 8 weeks of radiation coming up after I recover from the chemo. I live in central Pennsylvania.

Gunhild's picture
Gunhild
Posts: 37
Joined: Jul 2009

Am doing a reply because I'm not sure how to post to the board. I was diagnosed with papillary serous adenocarcinoma of the uterus in April. Had the usual total surgery by a gyn oncologist. First I developed hematomas under the incision and had to have two sets of sutures removed the second day post op. This had to heal from the inside out so had a wound vac for a while. Then developed a MRSA urinary tract infection. Went home for four days and developed sterile pelvic abcesses. Back in the hospital for drainage. Was there for two more weeks. Lots of antibiotics later, one of the abdominal wounds has developed a tunnel. I pack this every day. Now I have had my first carbo/taxol treatment. Lots of joint pain after. Am also having five weeks of radiation five days per week starting next Monday. Then two sessions of brachytherapy. The cancer had extended almiost through the uterine wall. I am grateful for this board. It is good to know one is not alone.

shortmarge
Posts: 296
Joined: Nov 2008

My heart and prayers are with you. There are lots of wonderful and strong women on this site to help you through your journey.

MIND, BODY AND SOUL.

Hugs.

Ro10's picture
Ro10
Posts: 1458
Joined: Jan 2009

What a story you have. I am so sorry you are on this journey with all of us. Feel free to vent or ask any questions you may have. Good luck with all of your treatments. You and your beautiful family will remain in my prayers. Take it one day at a time. In peace and caring. HUGS to you.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

You have been through ALOT!!! I'm sorry that you are dealing with so much. It sounds like they are aggressively treating your cancer. I recommend the book "Getting Well Again" by Carl Simonton. This helped me so much during my treatment and still. I also have UPSC- stage 3a.

Mary Ann

bella09
Posts: 37
Joined: Mar 2009

Welcome to this site. I am sorry for all that you have been through and you have already been through a lot. You and your family are in my prayers. You are not alone here.

Jean

bella09
Posts: 37
Joined: Mar 2009

Welcome to this site. You have come to the right place for support. We all vary in age and diagnosis, but I have found that there are many knowledgeable, caring people here. It is very easy to relate to each other. With your surgery behind you now you begin your radiation. I had 5 weeks of external IMRT radiation and 3 days of internal radiation. The only side effect that I had was being tired all the time. Everyone that helped me with my treatments were very kind. Unfortunetly it is something that we have to go through to get well. I hope that you do not have any side effects and are able to tolerate the treatments.

Jean

bella09
Posts: 37
Joined: Mar 2009

Welcome to this site. I am sorry to hear your diagnosis. There are several ladies on this site who also have UPSC. I hope that you find comfort here as were are all here for each other. You are in my prayers.

Jean

Ro10's picture
Ro10
Posts: 1458
Joined: Jan 2009

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
Posts: 3
Joined: Jun 2009

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.

pollypost
Posts: 5
Joined: Jul 2009

Hi Linda

I too had recently retired when diagnosed and it comes as a real shock.

Whilst prepared for losing my hair (and eyebrows, eyelashes etc. although not until later)
it comes as a quite a shock. As soon as it started to come out I got my husband to cut it all off and then use his beard trimmer to shave my head. From what I've heard from others doing it this way was far less upsetting than 'shedding' hair over days/weeks.

I've been to a Look Good, Feel Better and found it very enjoyable in all ways.

Hope you cope with the treatment. I had some homeopathic pills which I'm sure helped me through the worst and am now taking isacador drops to help me recover.

Ro10's picture
Ro10
Posts: 1458
Joined: Jan 2009

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.

pollypost
Posts: 5
Joined: Jul 2009

Hello Linda and Everyone

I'm from the UK (Lincoln, England) and it has been great to find others with USPC.
My details are:
Name: Polly
Stage 1B UPSC
Hysterectomy 10/12/08 (already had my ovaries removed in 2007)
4 fractions HDR brachytherapy to vaginal vault 8/01/09 - 29/01/09
6 cycles of carboplatin and paclitaxel 12/2/2009 - 28/5/09

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Hi, Patricia, and welcome. You have some big decisions to make and, as much as I hate to butt into that process, I would feel worse if I didn't. UPSC is a very aggrssive and recurrant cancer, even when caught early. And your Stage 1 diagnosis was based on a sampling of only 4 lymph nodes, which makes me not really trust it. I also had no symptoms and my suspecyed cancer was caught by a routine PAP test, and later confirmed with a D&C. All involved oncologists and physicians were sure it would be Stage 1 because we caught it so early and I was so ridiculously healthy. I had 25 lymph nodes removed during my surgery, and only 1 of those nodes had microscopic cancer cells in it. But that one involved lymph node was enough to make me Stage III-c. I have to think, what if they only removed 4 lymph nodes and missed that 1? I would have been staged lower and may not have had the chemo that I believe saved, or at least extended, my life. I can only imagine how painful it would be to lose all that long beuatiful hair. But please don't let that loss color your decision. I stringly encourage you to do the chemo, if offered, and to seek another opinion if chemo is not recommended. I started chemo November 10. 2008 and was bald by Thanksgiving, and I was bald for 7 long months and only now have enough hair to cover my scalp completely. (Last chemo was March 26, 2009.) I look stupid, but I am alive and feel good! BIG BIG HUGS!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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!

:D

kathybd
Posts: 126
Joined: Jul 2009

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

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

This journey is tough. I remember alot of the cards I received from friends when I first learned I had cancer. The ones that especially impressed me were the ones that said "take heart...be strong....if you can build a kitchen you can beat cancer...etc".

So I share those sentiments with you all - take heart and be strong. Let's fight the fight and let others help us. And let us enjoy LIFE - the gardening, the friendships, and the fun that is there for us too!!!!

God Bless all of us on this journey.

Mary Ann

kathybd
Posts: 126
Joined: Jul 2009

I like that Mary Ann. I also want to remind everyone to laugh. Sometimes I laugh to fake people out and before I know it, whatever was upsetting me doesn't seem quite as bad.
Happy thoughts to everyone!

Mimi25
Posts: 13
Joined: Jul 2009

Mimi, from Ft Myers, FL area (Mary Ann/Daisy....would love to connect)
Had total hysterectomy in Jan of 07. CA cells were found in the washings but was told no treatment was necessary.
One year later started to have problems and was found to have massive tumors in my abdomen. Had a major "debulking" in April of 2008 and started chemo about 6 weeks later.
(I requested that no lymph nodes be removed unless they looked suspicious, as I have had lymphedema in my right arm since a radical mastectomy in Feb of 1988).
Had six rounds of taxol/carbo platin and finished in Sep of 2008. Now, my PET scan shows numerous small tumors in my abdomen and I will have surgery next week to obtain samples of the tumors for MOLECULAR testing, with the goal of finding a new targeted drug that will be appropriate for my particular case.
When I found this site a week ago, I tried to get to this group to post a question regarding TARGETED drugs and whether anyone was on one, but I couldn't get to it. Now, I find myself on this site, and can't find the posting of my original question!!!
As you can see, I'm technically challenged.
I think it is wonderful that all of you have come together to support one another. I had asked my doctor for any others with UPSC and he never gave me a contact. I assumed the worst.
Now that I am officially on the roll, is anyone else taking one of the new targeted drugs?
Which one and how is it going? Side effects, etc?
Take care, Mimi

maggie_w
Posts: 18
Joined: Jul 2009

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's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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.)

maggie_w
Posts: 18
Joined: Jul 2009

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

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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.

maggie_w
Posts: 18
Joined: Jul 2009

dear linda,

i so appreciate your responses, so will miss them if you don't find an internet cafe at the beach. but, don't try to hard to find one.... we'll wait eagerly for your report when your return. i'm so glad you're having this wonderful time with your family, and can appreciate it so much. right now, in part to you, i am not worrying about radiation. doctor is insisting on the chemo within next 2 weeks, so that's what i'll do. period. one thing at a time. my partner and i are trying to get out of town for a few days, hopefully to the beach as well, before treatment starts, so we can enjoy time together while i'm actually feeling pretty darn good, and nearly recovered from the surgery. given how good i feel now, it makes having this damned cancer all the more unreal; of course the scar is certainly a reminder lest i forget, which of course never happens, really. still, it feels good to feel good.

it struck me when you said you'll do your best to live another 30 years, but would make 5 years enough and make peace with that, if that were the case (hopefully it's 30). at this point, i'd be thrilled with another 5 years, and anything more would be beyond the beyond.
i'm still fairly new with the diagnosis and trying to comprehend what it means to the extent that i can, so i can imagine i'll go though a number of changes as time goes on.

in the meantime, to you linda, and all our sisters, i'm so glad you're out there (and so sorry any of us has to be here), thank you, and may we all take in as much pleasure and joy as we can.

maggie

desertflower
Posts: 3
Joined: Jun 2009

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

california_artist
Posts: 850
Joined: Jan 2009

This is a copy of a page from my notes. I was diagnosed in February of 08. I had a 3x2x1 cm tumor, approcimatley 34% upsc, rest was regular uterine cancer. No lymph nodes were removed, the doctor wanted to immediately start me on chemo. Refused to do hormone test to see if cancer had hormone receptors. I knew I didn’t have enough information to confidently know the need for chemo. I asked for a pet scan, but was told a PET would not change my treatment options no matter what it showed. I opted to do research, and have been doing nearly daily research for the past year and a half. At some point I asked myself these questions. I have found some answers.

from page 366 of the mayo clinic’s book on women’s cancers.
Can't get the chart to reprint, but the stats were:
1987 35,000 cases 2,900 deaths
2004 40,320 cases 7,090 deaths
The good news is, the survival rate is still over 80%, but the question still remains, why has the percent gone up and not down, considering all the progress????

I look at the stats, and continue to ask myself why?
Why with an increase of only slightly greater than 5,000 cases, are there more than 4,000 more deaths?
Cancer is a cell.
Different cells have different needs in order to survive.
Find out what cancer cells need to survive.
Don’t provide those things.
Or find out why they die and do those things.
Or better yet, find out both and do everything you can to deprive them or kill them outright.
Look to what other countries are doing.
What are their survival rates?
What is their incidence of cancer.
Has UPSC become more common in recent years.
The drugs most doctors use are the same ones they’ve been using for over thirty years. Why?
Generally, with uterine cancer, your body got out of whack at some point and did not have the ability to fight its way back to health.
Make it healthy again. Build up and support your immune system.

Any thoughts? Anyone else researching other helpful ways to manage and defeat cancer at its most basic level?

As always, love and hope to us all,

Claudia

I guess what I'm trying to say is, I don't want any of us to suffer with this, and there are things we can do every day that could help our bodies fight cancer cells. Your pain is truly my pain. I read, and I cry. Be well.

california_artist
Posts: 850
Joined: Jan 2009

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.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

My doctor is not recommending radiation for my stage 3a UPSC. At first I was worried that I was being UNDER treated by now after he explained I feel better. The rationale? Recurrence in vaginal cuff is VERY CURABLE. He does not think the risks of radiation and the damage it can do are worth it. I appreciate his thinking. Sometimes the TREATMENT is worse than the disease.

I guess time will tell for all of us which is the better way to go. I encourage all of you to ask these types of questions of your doctors.

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

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?

Katrinka123
Posts: 54
Joined: Jul 2009

Hi Cathy! I'm sorry you have had to join us here, but I am glad to hear you are doing well after your first chemo treatment. It sounds like I had a different course of chemo than you are having, so I can't quite comment on your side effects, perhaps someone else here can be more helpful.

I don't like that you were given survival "dates" - I think there is so much that is individual with cancer and treatments, I just don't believe in that.

Stay strong and I hope you continue to do well with your treatments!

-Kat

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Sorry to hear your story. Do you have a gynecological oncologist? If not, this is the best specialist to have.

I am not an expert in any of this, but am continuing to learn. At first I was blissfully ignorant - fully trusting my doctor. I think doctors would prefer us to be quietly accepting of their recommendations. But I'm glad I have and continue to learn about my cancer and treatment and have started to ask questions and obtain answers. This discussion board has been very helpful.

I have stage 3a uterine papillary serous carcinoma (UPSC for short)- diagnosed last Sept. It is rare and aggressive and highly recurrent. My regime was 6 rounds of taxol and carboplatin which I finished in Feb. I had few side effects and handled treatment well. My hair started falling out at the 2 week mark (right on schedule). I finally shaved my head - it was less depressing for me than looking at the few strands that remained.

Are they checking and monitoring your CA125 (an ovarian cancer marker that is also used for some uterine cancers like mine)? I also recommend you get COPIES of all your medical records now and along the way. You may need this for second opinions, fighting insurance companies (like I've had to do), and for your own knowledge and tracking of your progress. Also check the NCCN guidelines for treatment guidelines. See if functional profile, oncogene, and hormone testing was done on your cancerous tissue. You may be eligible for a clinical trial. ASK LOTS OF QUESTIONS.

I recommend you read O. Carl Simonton's "Getting Well Again". This will give you HOPE that you can be cured and/or get in remission. Stay positive and strong. Your mind is so powerful. And remember that new treatments are being developed to give all of us better odds.

Best wishes. Keep us posted. Prayers are being sent to you.

Mary Ann

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

I am getting day 1 Cisplatin day 2 Taxol and the third day white blood cell shot.
my doc is a gynecological oncologist and very obnoxious, he has to always be right. started with infection in my staples, urgent care doc said WOW that must hurt! and gave me antibiotics, seen my doc the next day and he said , "that is not infected, that doc doesnt know what he is talking about" so I said well I guess I should stop taking the antibiotics!? , well no was his answer.
that is the smallest problem, problem 2 I am on medicaid , this is good in some respects that I am not worrying about bills so far. bad thing, I am not sure what is or is not prescribed due to the "rules" medicaid has, like generic for everything.
not sure what the ca125 is, the doc has a nurse that does EVERYTHING except operate and exams, she says there is no way to know if the chemo is working for quite a while. I am not accepting that. but again all I have to deal with is the doc and nurse, I do have the chemo nurses but they are just nurses. so not many to discuss this. the doc does not want to talk to me, I have to pry everything out of him and it is usually tecnical jargon I can not understand. I have a check up with him next week. any questions I should ask. or try to ask?

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Patricia

I know it is frightening to read about all of the "possible" side effects, but everyone reacts differently. I had very few side effects.... (I had taxol and carbo after I completed radiation.) The gyn onc. told me that I would have more difficulty keeping my counts good since it was following radiation, which can do a number on the bone marrow.I had virtually no nausea and absolutely NO vomiting. I did feel a little "quesey" a few times. Yes, I lost my hair and that was hard for me, but it is growing back in. Mostly what I felt was fatigue....just not much zip. About day 5 I was pretty much back to normal, except when my hemoglobin got too low...then I was REALLY tired. A couple of units of packed cells later and I was good to go! I did have a few treatments delayed as my white count and/or platelets were too low. I did take Neulasta shots 24 hours after each chemo treatment but I had very little bone pain and that was gone in 24-48 hours. My biggest issue has been numb and/or painful toes....But overall, in one's fight to cure this nasty stuff, it has been a very small price to pay.

Please don't give up! Keep asking lots of questions.

You can do it!!
Karen

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Patricia, I'll try to answer the best I can.

According to the NCCN Guidelines (which my GYN/ONC group uses), after surgical debulking adjuvant treatment is decided by the patient's STAGE. Chemo is a primary treatment for UPSC - papillary serous carcinoma. I didn't question whether to have this or not. EVERYTHING has side effects and I guess we just weigh the pros and cons. My head spins just reading the inserts for prescriptions. I also had fatigue and some neurapathy. I still have some in my toes after 5 months but it is getting better with time.

Radiation is another adjuvant treatment and there are side effects with this. I have stage 3a UPSC and my doctor in so many words thinks the benefits do not outweigh the risks FOR ME. He thinks that I have very good odds NOT to have a recurrence and if I do have one in the vaginal cuff he said he has a 90% cure rate for this. He is very well respected in the field so I am going with his thinking. I think we all need to make these decisions with the best info and discussions with our doctors. Many women here have stage 3c for which radiation may make more sense.

Re: CA125- a blood test. In my case, it was believed to be an indicator of treatment response. Mine dropped dramatically after the first chemo and the level was checked before each treatment. CA125 may not be a reliable indicator for all of us.

Re: hormone testing. My first doctor moved and my new doctor (in same practice) ordered hormone testing on my original tissue just to gather info for future possible treatment. I really do not know much about this but there has been some posting on this subject somewhere on this discussion board. Others have more info on this than me.

The body has great healing capabilities and so does the MIND. I pursued other non-medical treatments. I had weekly "healing touch" sessions during the months of chemo and meditated several times daily. I went to a counselor to deal with stressors in my life and how I could change the way I handled them. The book, Getting Well Again by O. Carl Simonton really helped me and continues to - sorry I'm such a broken record about this.

For what it is worth this is my 2 cents. As many have said here, we are all different and not statistics. We all are faced with making these decisions. I wish us all the very best in this journey. We need all the strength, HOPE, and positive thinking we can muster. God bless.

Mary Ann

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

thanks all for the welcome and Patricia, well I this is the second doctor. first one general gyn did biopsy and diagnosis of cervical cancer, then disapeared for a week, couldnt contact him and he had no one else to answer my questions, so on came second doctor a specialist. I am on medicade. and I am told there are 2 other specialists in michigan, detroit and ann arbor which are 4 hrs away, I am 1 1/2 hr away from this doctor and hospital where I get the chemo! and 45 min from the closest hospital where I get the white blood cell shot. so to answer your question, no there is no other doc I could go to that has the knowledge this doc has, I just have to get him on the same page as myself. which may be quite a job.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Cathy,

Maybe a little homemade goodie the next time you see him might warm up his heart a little. He may remember you and appreciate you. The best way to a man's heart, etc....

Just a thought. Mary Ann

maryln3
Posts: 65
Joined: Jul 2009

you can goggle anything you want to know about

i am like you ...i know no one who had cancer or has cancer...i depend on blogs like this

i belong to another blog email me at maryln3@aol.com i will send you all the research you need on stage 4....i have stage 1c with a agressive tumor....my doctor
never did a lymoph node biosy so i am haveing another surgery with another surgeon on 8/6/09...

when i get your email i will help you

Rribbit
Posts: 9
Joined: Apr 2009

Hi Cathy - are you still visiting this site? Just curious where you are in treatment these days. I am one of the few other stage 4's here and, like you, I've found it very hard to find survivors to network with. Would love to hear from you. What histologic type is your cancer by the way?

I can be reached at paigeldonnelly@gmail.com

linda66
Posts: 3
Joined: Jun 2009

Thanks to everyone for their friendly welcome to me on this site.

I started losing my hair at the end of the second week after 1st chemo. I took others' advice and got all my hair buzzed & now have a short stubble. It wasn't so bad. I took a before and after picture and then used a turban at first. I now wear my wig for some occasions, but at home or general activities I am wearing a hat or turban. I'm surprised that I am getting into it and am getting out all my old dangling earrings.

I go for my second chemo this coming Wednesday and am trying to prepare for it so I don't have times of fainting, vomiting, and dehydration as I did after the first chemo. I am drinking lots of fluids and have started varying the types. Has anyone heard of eating salty foods to try to keep from dehydrating with salt helping your body to hold water? I thought I was drinking lots of water after my first chemo but still got dehydrated.

ro_NJ
Posts: 11
Joined: Jul 2009

I came to this site to find others who have endometrial cancer - I've spoken to a lot of women at work who had hysterectomies, but none had cancer along with it. July 1st I was diagnosed with Stage 2 Endometrial / Cervix cancer. MRI shows the tumor is half way through the wall. Dr is recommending radiation treatments first, which I will start mid August - then internal radiation, followed by a hysterectomy. I'm just trying to learn what others have experienced in this arena. What type of supplements are you taking to keep your body strong through this experience?

It's amazing to see such a support group. it's mind boggling how many of us are experiencing this disease. My heart goes out to all of you.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Welcome Ro,

Yes, this is a great place, isn't it!!

I just took my multivitamins. But my chemo nurse recommended Purity brand vitamins because they are better at providing nutrients - She said the regular ones don't absorb as well as these. I am considering buying these special ones but haven't yet. I'd be interested to know what others are using and where they get them.

Glad you joined us. Mary Ann

maryln3
Posts: 65
Joined: Jul 2009

I NEVER HEARD OF THAT BEFORE RADIATION AND THEN A HYSTERECTOMY BUT IT SOUNDS VERY LOGICAL TO ME....

MY TUMOR WAS THE SAME AS YOURS...BUT I GET RADIATION AFTER THE HYSTERECTOMY

ro_NJ
Posts: 11
Joined: Jul 2009

The oncologyst recommended it because he said that if we kill off the cancer, or shrink the tumor - it'll be safer for him to operate - plus we all know what happens if the dr accidentally cuts into the cancer - I'll have it more places than I want it. It made sense to me.

As for vitamins - I'm taking "over 50" Garden of Life - whole foods have it - it also has probiotics in it - my chiro, who is into holistic healing - recommended it to me... I don't usualy take vitamins, as they make me sick, but so far, they haven't bothered my stomach or made me nausious. Post surgery, he's suggesting - goldenrod / echenisia drops under your tongue to promote healing - and yogurt for your stomach as well - have to put the good bacteria back in your body. (p.s. pardon my spelling)

Ro

seaturtle
Posts: 41
Joined: Aug 2012

I am 65 and just diagnosed with Level 1 uterine cancer (from prescribed estrogen, long-term). I have to come off estrogen abruptly, surgery is scheduled for this Tuesday.
I am in southern Vermont, going to Dartmouth for surgery.

I welcome this forum, the only support I have. Locally, there is supposed to be a cancer group run by the hospital, but they don't have enough people (!) who want to join it.

I am on SSI alone, no Social Security. I do have 6 cats (lost one Monday to cancer), who are my little family. My second love is my garden.

I'd like to be called Turtle (one of my favourite animals).

Goldamillie
Posts: 26
Joined: Oct 2012

Hello, Turtle

Just wanted to say hello. I see you were up in the wee hours and I wanted to give you a "hey there" - I agree female patient support for cancers other than breast is almost non existent. No pink ribbon for the uterus! Oh, well we do what we must.

Level one sounds like you will be okay as you caught it early. Let everyone know how it is going, please.

Sincerely,

Golda Millie in Baltimore MD

p.s. give your babies a pet for me - I am a cat (well, all animals) kind of person, too. :o)

bella09
Posts: 37
Joined: Mar 2009

Welcome to this site and I am glad that you found it. I did not take any supplements during my radiation treatment. I tolerated the treatments well and the only side effect was tiredness. I did get a lot more rest. I had my DaVinci surgery before my radiation. I think that you are the first that I have read that is getting it after treatment. I hope that your treatments and surgery go well with no side effects and that you heal quickly. Like you, I did not know of anyone who had uterine cancer, but lots of women who had an hysterectomy. This site has been very helpful. My stage and grade was determined after my surgery. You are in my prayers.

ro_NJ
Posts: 11
Joined: Jul 2009

Thanks Bella - I think we're all rooting for each other. I'm sure once I begin the radiation treatments I'll meet more women experiencing the same thing. I've read a lot about the DaVinci surgery - did they also check your lymph nodes with that type of surgery? Where I'm going, they're not offering that method - they're saying I'll need another "bikini cut". But I have time before I even need to think about that.

bella09
Posts: 37
Joined: Mar 2009

You asked if the doctor checked my lymph nodes. After surgery my doctor told me that my lymph nodes looked questionable. He removed 54 and at my follow up appt. he said that they were all clear. I should have asked if they checked all 54 or a percentage. My doctor said before surgery if he was not able to do the DaVinci, due to a large uterus, he would do another type of hysterectomy. If he did the other type, he would still check my lymph nodes. I ended up having the DaVinci. Did the doctor tell you that he couldn't check your lymph nodes during your initial surgery?

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network