Uterine Papillary Serous Carcinoma (UPSC): any others here???

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Comments

  • anna31
    anna31 Member Posts: 1

    Just moving our LONGEST, OLDEST, & BEST thread to page 1.
    There are so many new women posting with UPSC that I wanted to move this old thread up to page 1, and encourage those with the time to sit down and read this from start to finish, like a book about having UPSC. I think you will find it well worth your time, and the best resource on the web for 'real time' information and experience. ENJOY!

    New Here
    Hello, I am new to all of this and will be starting my first chemo this Thursday. I am 31 and have stage 3c papillary serous cancer. I can't tell you all how much your postings about your treatment has helped calm me about radiation. I'm terrified of it and what it may do to my sex life with my husband but hearing how you all have handled things has helped me out a lot. Thank you so much!
    Anyway, hope to start coming here more often.
    Take care,
    Anna
  • Ro10
    Ro10 Member Posts: 1,561 Member
    anna31 said:

    New Here
    Hello, I am new to all of this and will be starting my first chemo this Thursday. I am 31 and have stage 3c papillary serous cancer. I can't tell you all how much your postings about your treatment has helped calm me about radiation. I'm terrified of it and what it may do to my sex life with my husband but hearing how you all have handled things has helped me out a lot. Thank you so much!
    Anyway, hope to start coming here more often.
    Take care,
    Anna

    Welcome Anna
    Sorry you are having to join our sisterhood. I too have Stage III-C UPSC. I finished my initial treatments in August 2009. All of the treatments are very scary because you do not know how you are going to react to the treatments. As you read the posts here you see how differently people react to the same treatments. I hope you have a port for your chemo. We are here to answer your questions and address any concerns you might have, or to just listen to your fears. My biggest fear before chemo was that I would be nauseated from the chemo. And I never was nauseated from the chemo. But until you go through it, you don't know what to expect. Wishing you good luck Thursday on your first chemo. Hope you have someone to go with you. In peace and caring.
  • Rona Badger
    Rona Badger Member Posts: 1
    Me Too - Hello Dear Ones
    I'd like to tell you my story in hopes it will answer some questions for others:

    On October 7, 2009, my doctor told me the biopsy report showed I had uterine papillary serous adenocarcinoma (UPSC).

    I soon found out that this is an uncommon form of endometrial cancer that typically arises in postmenopausal women. I was already three years into menopause. Also, my oldest sister died of cancer when she was forty-five years old. Having a one-degree relative with cancer was another piece in explaining my health puzzle.

    I always lived a very healthy life and lifestyle. My only medical problem was migraine headaches and I had a history of those going back to my early twenties.

    Here is how my cancer was discovered: In early September 2009, I started bleeding coupled with abdominal and lower back pain. This is what led me to see a doctor. Up until then, I was feeling fine. Just the usual aches and pains of getting a bit older. I was looking forward to my birthday in October, when I would turn 52.

    I did have a strong inkling that change was coming. Toward the end of the summer, I told a close friend that right around my birthday, I felt something big was going to happen. I didn't know what it was going to be, except that it was going to be major, and positive, and something that would change everything about the way I was going about my life. I thought this must have something to do with my career or someone I would meet and work with. We discussed this several times, as we usually talk on the phone once or twice a week. "Do you have any idea what it is?" she would ask. "No. I just know around my birthday, things will be different," I kept telling her.

    Once my doctor gave me the news, I began a very fast track for treatment. My phone was ringing non-stop. There were many tests and appointments. Surgery was scheduled for October 20, when I underwent a bilateral salpingo-oophorectomy. I stayed for two nights in the hospital. The surgery went very well, and was able to be done laparoscopically, so the healing time was shorter than a full abdominal incision. I have four "holes" that are now hardly visible.

    After surgery, I just lounged around in bed. On October 29, it was time for my post-op appointment and to get my pathology report.

    This part is where it gets scary. The cancer spread to the lymph nodes, meaning I had Stage 3C cancer. We knew this was an aggressive type so it was not totally unexpected but we were hoping it would have been confined to the uterus. The surgery was the beginning and now I had a ways more to go.

    Next was targeted radiation treatments at the site of surgery, and I had three of those in the next month. I would also have six rounds of chemotherapy. These were 5-hour IV-drip sessions, but spaced three weeks apart. My first treatment was on November 12 and I have now just finished in early March 2010.

    After the first chemo, my hair started to fall out. I had my head shaved. By the fourth chemo, I lost my eyebrows and most of my eyelashes. I have skimmed this message board and laughed at the person who said they looked like a turtle without their shell! That is me. The steroids combined with the chemo gave me a very round face.

    In the next few weeks, I will have an MRI and blood work. Then I will see my doctors on March 24 when they WILL pronounce me officially IN REMISSION. That is my humble prayer.

    Through everything I have been blessed by the love of many people. I used Caring Bridge as a daily diary where I could write about my fears and hopes. I want all of you experiencing this to know that you can make it! Laughter is the very best medicine and the more you smile, the faster you will look and feel like your old self again! Emphasis for me on the old ;-).

    Much love and many blessings, dear UPSC sisters! Rona
  • Ro10
    Ro10 Member Posts: 1,561 Member

    Me Too - Hello Dear Ones
    I'd like to tell you my story in hopes it will answer some questions for others:

    On October 7, 2009, my doctor told me the biopsy report showed I had uterine papillary serous adenocarcinoma (UPSC).

    I soon found out that this is an uncommon form of endometrial cancer that typically arises in postmenopausal women. I was already three years into menopause. Also, my oldest sister died of cancer when she was forty-five years old. Having a one-degree relative with cancer was another piece in explaining my health puzzle.

    I always lived a very healthy life and lifestyle. My only medical problem was migraine headaches and I had a history of those going back to my early twenties.

    Here is how my cancer was discovered: In early September 2009, I started bleeding coupled with abdominal and lower back pain. This is what led me to see a doctor. Up until then, I was feeling fine. Just the usual aches and pains of getting a bit older. I was looking forward to my birthday in October, when I would turn 52.

    I did have a strong inkling that change was coming. Toward the end of the summer, I told a close friend that right around my birthday, I felt something big was going to happen. I didn't know what it was going to be, except that it was going to be major, and positive, and something that would change everything about the way I was going about my life. I thought this must have something to do with my career or someone I would meet and work with. We discussed this several times, as we usually talk on the phone once or twice a week. "Do you have any idea what it is?" she would ask. "No. I just know around my birthday, things will be different," I kept telling her.

    Once my doctor gave me the news, I began a very fast track for treatment. My phone was ringing non-stop. There were many tests and appointments. Surgery was scheduled for October 20, when I underwent a bilateral salpingo-oophorectomy. I stayed for two nights in the hospital. The surgery went very well, and was able to be done laparoscopically, so the healing time was shorter than a full abdominal incision. I have four "holes" that are now hardly visible.

    After surgery, I just lounged around in bed. On October 29, it was time for my post-op appointment and to get my pathology report.

    This part is where it gets scary. The cancer spread to the lymph nodes, meaning I had Stage 3C cancer. We knew this was an aggressive type so it was not totally unexpected but we were hoping it would have been confined to the uterus. The surgery was the beginning and now I had a ways more to go.

    Next was targeted radiation treatments at the site of surgery, and I had three of those in the next month. I would also have six rounds of chemotherapy. These were 5-hour IV-drip sessions, but spaced three weeks apart. My first treatment was on November 12 and I have now just finished in early March 2010.

    After the first chemo, my hair started to fall out. I had my head shaved. By the fourth chemo, I lost my eyebrows and most of my eyelashes. I have skimmed this message board and laughed at the person who said they looked like a turtle without their shell! That is me. The steroids combined with the chemo gave me a very round face.

    In the next few weeks, I will have an MRI and blood work. Then I will see my doctors on March 24 when they WILL pronounce me officially IN REMISSION. That is my humble prayer.

    Through everything I have been blessed by the love of many people. I used Caring Bridge as a daily diary where I could write about my fears and hopes. I want all of you experiencing this to know that you can make it! Laughter is the very best medicine and the more you smile, the faster you will look and feel like your old self again! Emphasis for me on the old ;-).

    Much love and many blessings, dear UPSC sisters! Rona

    Rona welcome to the site
    I am sorry you are joining our sisters in your fight of UPSC. I too have stage III-C UPSC. I am glad you made it through your treatments. I love your positive attitude, and I hope you will get the good news on March 24. Your hair will begin to come back so you won't look like a turtle. Caring Bridge is a great tool to communicate with others and to get postive feedback from people. I am so glad you are blessed by the love of many people. That is so helpful. Look forward to hearing more from you. In peace and caring.
  • Barbara_Calif
    Barbara_Calif Member Posts: 5

    Me Too - Hello Dear Ones
    I'd like to tell you my story in hopes it will answer some questions for others:

    On October 7, 2009, my doctor told me the biopsy report showed I had uterine papillary serous adenocarcinoma (UPSC).

    I soon found out that this is an uncommon form of endometrial cancer that typically arises in postmenopausal women. I was already three years into menopause. Also, my oldest sister died of cancer when she was forty-five years old. Having a one-degree relative with cancer was another piece in explaining my health puzzle.

    I always lived a very healthy life and lifestyle. My only medical problem was migraine headaches and I had a history of those going back to my early twenties.

    Here is how my cancer was discovered: In early September 2009, I started bleeding coupled with abdominal and lower back pain. This is what led me to see a doctor. Up until then, I was feeling fine. Just the usual aches and pains of getting a bit older. I was looking forward to my birthday in October, when I would turn 52.

    I did have a strong inkling that change was coming. Toward the end of the summer, I told a close friend that right around my birthday, I felt something big was going to happen. I didn't know what it was going to be, except that it was going to be major, and positive, and something that would change everything about the way I was going about my life. I thought this must have something to do with my career or someone I would meet and work with. We discussed this several times, as we usually talk on the phone once or twice a week. "Do you have any idea what it is?" she would ask. "No. I just know around my birthday, things will be different," I kept telling her.

    Once my doctor gave me the news, I began a very fast track for treatment. My phone was ringing non-stop. There were many tests and appointments. Surgery was scheduled for October 20, when I underwent a bilateral salpingo-oophorectomy. I stayed for two nights in the hospital. The surgery went very well, and was able to be done laparoscopically, so the healing time was shorter than a full abdominal incision. I have four "holes" that are now hardly visible.

    After surgery, I just lounged around in bed. On October 29, it was time for my post-op appointment and to get my pathology report.

    This part is where it gets scary. The cancer spread to the lymph nodes, meaning I had Stage 3C cancer. We knew this was an aggressive type so it was not totally unexpected but we were hoping it would have been confined to the uterus. The surgery was the beginning and now I had a ways more to go.

    Next was targeted radiation treatments at the site of surgery, and I had three of those in the next month. I would also have six rounds of chemotherapy. These were 5-hour IV-drip sessions, but spaced three weeks apart. My first treatment was on November 12 and I have now just finished in early March 2010.

    After the first chemo, my hair started to fall out. I had my head shaved. By the fourth chemo, I lost my eyebrows and most of my eyelashes. I have skimmed this message board and laughed at the person who said they looked like a turtle without their shell! That is me. The steroids combined with the chemo gave me a very round face.

    In the next few weeks, I will have an MRI and blood work. Then I will see my doctors on March 24 when they WILL pronounce me officially IN REMISSION. That is my humble prayer.

    Through everything I have been blessed by the love of many people. I used Caring Bridge as a daily diary where I could write about my fears and hopes. I want all of you experiencing this to know that you can make it! Laughter is the very best medicine and the more you smile, the faster you will look and feel like your old self again! Emphasis for me on the old ;-).

    Much love and many blessings, dear UPSC sisters! Rona

    Another UPSC member
    My story is not very different than yours. Here is my story:

    In the fall of 2008 I began having symtoms and went to my Dr. She sent me to a Obgyn to have a polyp removed from my cervix. Everyone said that was all that was wrong. The polyp was diagnosed as benign. The symtoms continued and I went back to my Dr. who sent me for all kinds of tests....including tests for my kidneys and bladder. By this time it was Spring of 2009. A tech, who was doing an ultrasound on my bladder decided to look around and found the growth in my uterous. In May I was diagnosed with slow growing uterine cancer. The first available date for surgery was mid-July (since it was considered a slow growing cancer the Dr. said not to worry).

    My surgery (a radical hysterectomy) was done with the use of a robot so I have five small scars and only spent one night in the hospital. The cancer had metasticized so they also took out 52 lymph nodes. My tumor was taken to a tumor board and rediagnosed as UPSC stage IIIc. I had a port inserted and began chemo in August....6 sessions, two half days each every 21 days. I had the last set Dec 7th and 8th. The main ingredients were Paclitaxelm, Adriamycin and Cisplatin.

    Of course, I lost my hair, eyebrows, eye lashes.....every hair except 3 stray eyebrow hairs that were growing in strange directions (so I plucked them). I bought a red wig since I've always wondered what it would be like to be a redhead. It looks pretty good.

    I began to feel much better around the middle of February. I went for walks all during the chemo and am now walking and exercising just about every day. It helps a lot. I still get twinges of numbness in some fingers and toes but less all the time.

    At this point my hair is growing back in....the couple I get on occasion on my chin came back first....they must be really hardy from all the plucking I've done over the last few years. Needless to say, I have not allowed them to stay.

    I am grateful for the love of wonderful friends and family. I feel really positive about the future and even when I get scared I try not to lose my sense of humor. I'm going for my 3rd CAT scan this week. My Dr. has me on an every two month visit schedule and says we're not going to remove the port...so I plan to just enjoy each day.

    I am so very glad to have found you all. Barbara
  • Ro10
    Ro10 Member Posts: 1,561 Member

    Another UPSC member
    My story is not very different than yours. Here is my story:

    In the fall of 2008 I began having symtoms and went to my Dr. She sent me to a Obgyn to have a polyp removed from my cervix. Everyone said that was all that was wrong. The polyp was diagnosed as benign. The symtoms continued and I went back to my Dr. who sent me for all kinds of tests....including tests for my kidneys and bladder. By this time it was Spring of 2009. A tech, who was doing an ultrasound on my bladder decided to look around and found the growth in my uterous. In May I was diagnosed with slow growing uterine cancer. The first available date for surgery was mid-July (since it was considered a slow growing cancer the Dr. said not to worry).

    My surgery (a radical hysterectomy) was done with the use of a robot so I have five small scars and only spent one night in the hospital. The cancer had metasticized so they also took out 52 lymph nodes. My tumor was taken to a tumor board and rediagnosed as UPSC stage IIIc. I had a port inserted and began chemo in August....6 sessions, two half days each every 21 days. I had the last set Dec 7th and 8th. The main ingredients were Paclitaxelm, Adriamycin and Cisplatin.

    Of course, I lost my hair, eyebrows, eye lashes.....every hair except 3 stray eyebrow hairs that were growing in strange directions (so I plucked them). I bought a red wig since I've always wondered what it would be like to be a redhead. It looks pretty good.

    I began to feel much better around the middle of February. I went for walks all during the chemo and am now walking and exercising just about every day. It helps a lot. I still get twinges of numbness in some fingers and toes but less all the time.

    At this point my hair is growing back in....the couple I get on occasion on my chin came back first....they must be really hardy from all the plucking I've done over the last few years. Needless to say, I have not allowed them to stay.

    I am grateful for the love of wonderful friends and family. I feel really positive about the future and even when I get scared I try not to lose my sense of humor. I'm going for my 3rd CAT scan this week. My Dr. has me on an every two month visit schedule and says we're not going to remove the port...so I plan to just enjoy each day.

    I am so very glad to have found you all. Barbara

    welcome Barbara
    Glad you did find this site. I have found it helpful in so many ways. Glad you made it through you chemo. You are the first one who has received Adriamycin. And most of us had Carboplatin instead of Cisplatin. I hope you continue to get good results from you follow-ups. I know you will look forward to your hair growing back. Keep that positive attitude and continue to enjoy each day. In peace and caring.
  • Barbara_Calif
    Barbara_Calif Member Posts: 5
    Ro10 said:

    welcome Barbara
    Glad you did find this site. I have found it helpful in so many ways. Glad you made it through you chemo. You are the first one who has received Adriamycin. And most of us had Carboplatin instead of Cisplatin. I hope you continue to get good results from you follow-ups. I know you will look forward to your hair growing back. Keep that positive attitude and continue to enjoy each day. In peace and caring.

    Thanks for the welcome
    Thank you for the welcome note. I see that you have belonged for over a year. That's good news. How are you doing? Do you know how many women with UPSC are regularly active on the site?

    Adriamycin is a trade name for doxorubicin hydrochloride. It's red and they like you to drink lots of liquid (plus what they give you through the IV) before, during and after getting it so it will wash through quickly since it can harm your kidneys. It is supposed to stop the growth of cancer cells. I wish I really understood how the doctors make decisions about which drugs a patient will get. Sometimes I feel a bit like a science project.

    Barbara
  • RGW
    RGW Member Posts: 60

    Thanks for the welcome
    Thank you for the welcome note. I see that you have belonged for over a year. That's good news. How are you doing? Do you know how many women with UPSC are regularly active on the site?

    Adriamycin is a trade name for doxorubicin hydrochloride. It's red and they like you to drink lots of liquid (plus what they give you through the IV) before, during and after getting it so it will wash through quickly since it can harm your kidneys. It is supposed to stop the growth of cancer cells. I wish I really understood how the doctors make decisions about which drugs a patient will get. Sometimes I feel a bit like a science project.

    Barbara

    I was diagnosed with UPSC
    I was diagnosed with UPSC on February 10, 2010 and underwent a radical hysterectomy and the whole shebang on March 2nd. I live in the Washington, D.C. area and am home recovering. I am the third generation of women in my family to have a gynecological malignancy. My grandmother had uterine/ovarian in 1958 (survived), my mother had uterine/ovarian in 1982 (survived), and my cousin died of breast cancer in 2008 at age 42.

    I tried to read some of the postings on this site prior to my surgery, but found it too difficult. I now realize that there are so few women with UPSC, seems that they are all on this site. So, strength in numbers.
  • luckyandblest
    luckyandblest Member Posts: 11
    RGW said:

    I was diagnosed with UPSC
    I was diagnosed with UPSC on February 10, 2010 and underwent a radical hysterectomy and the whole shebang on March 2nd. I live in the Washington, D.C. area and am home recovering. I am the third generation of women in my family to have a gynecological malignancy. My grandmother had uterine/ovarian in 1958 (survived), my mother had uterine/ovarian in 1982 (survived), and my cousin died of breast cancer in 2008 at age 42.

    I tried to read some of the postings on this site prior to my surgery, but found it too difficult. I now realize that there are so few women with UPSC, seems that they are all on this site. So, strength in numbers.

    UPSC Also
    My wife was diagnosed with UPSC in December 2009 and had surgery January 6, 2010. They took out everything. We are now in chemotherapy, having just finished her first treatment.
  • Barbara_Calif
    Barbara_Calif Member Posts: 5

    UPSC Also
    My wife was diagnosed with UPSC in December 2009 and had surgery January 6, 2010. They took out everything. We are now in chemotherapy, having just finished her first treatment.

    Hope Chemo is going well
    I hope your wife is doing okay on the Chemo they have chosen for her. Please wish her well for me. I finished my chemo in December and am now feeling good. I think one of the reasons I made it through the Chemo as well as I did is because I made myself walk outdoors as many days as I could and I got great advice from an Oncology Nutritionist.

    Barbara
  • Barbara_Calif
    Barbara_Calif Member Posts: 5
    RGW said:

    I was diagnosed with UPSC
    I was diagnosed with UPSC on February 10, 2010 and underwent a radical hysterectomy and the whole shebang on March 2nd. I live in the Washington, D.C. area and am home recovering. I am the third generation of women in my family to have a gynecological malignancy. My grandmother had uterine/ovarian in 1958 (survived), my mother had uterine/ovarian in 1982 (survived), and my cousin died of breast cancer in 2008 at age 42.

    I tried to read some of the postings on this site prior to my surgery, but found it too difficult. I now realize that there are so few women with UPSC, seems that they are all on this site. So, strength in numbers.

    RGW re strength in numbers
    Dear RGW, I'm still not sure I'm doing this correctly. It takes me a bit of time to refind this group each time....however, I'm long on determination and have also only found women with UPSC on this site.

    I was sorry to read that your family has had to face cancer so many times. I hope your recovery is going well.

    I wrote earlier about my diagnosis so I won't go through it again. I'm on a fairly short leash right now. I'm seeing an Oncologist every other month and the Gynocolgy Oncologist every three months. I just had my third CAT scan, since I was first diagnosed in August, on Thursday. Nothing new....which is great news. I've also been attending a "transitions" class for patients who have recently completed their treatment. It covers excercise, nutrition, emotional and physical changes and what information we need to track going forward. It was created by the Lance Armstrong Foundation and takes place at the Wellness Community (a wonderful support organization that provides free programs for cancer survivors and their families and care-givers). I haven't found anyone there so far with a UPSC diagnosis.

    Wishing you a speedy recovery from the surgery,

    Barbara
  • Barbara_Calif
    Barbara_Calif Member Posts: 5
    RGW said:

    I was diagnosed with UPSC
    I was diagnosed with UPSC on February 10, 2010 and underwent a radical hysterectomy and the whole shebang on March 2nd. I live in the Washington, D.C. area and am home recovering. I am the third generation of women in my family to have a gynecological malignancy. My grandmother had uterine/ovarian in 1958 (survived), my mother had uterine/ovarian in 1982 (survived), and my cousin died of breast cancer in 2008 at age 42.

    I tried to read some of the postings on this site prior to my surgery, but found it too difficult. I now realize that there are so few women with UPSC, seems that they are all on this site. So, strength in numbers.

    RGW re strength in numbers
    Dear RGW, I'm still not sure I'm doing this correctly. It takes me a bit of time to refind this group each time....however, I'm long on determination and have also only found women with UPSC on this site.

    I was sorry to read that your family has had to face cancer so many times. I hope your recovery is going well.

    I wrote earlier about my diagnosis so I won't go through it again. I'm on a fairly short leash right now. I'm seeing an Oncologist every other month and the Gynocolgy Oncologist every three months. I just had my third CAT scan, since I was first diagnosed in August, on Thursday. Nothing new....which is great news. I've also been attending a "transitions" class for patients who have recently completed their treatment. It covers excercise, nutrition, emotional and physical changes and what information we need to track going forward. It was created by the Lance Armstrong Foundation and takes place at the Wellness Community (a wonderful support organization that provides free programs for cancer survivors and their families and care-givers). I haven't found anyone there so far with a UPSC diagnosis.

    Wishing you a speedy recovery from the surgery,

    Barbara
  • Always Hopeful
    Always Hopeful Member Posts: 234
    Newly diagnosed
    Is there a more current UPSC board? I'm new to all of this and keep getting bogged down in the searching.

    Due to spotting on Feb. 28, 2010, I had an endometrial biopsy on March 1 and was diagnosed with cancer on March 4th. I, too, have the rare and aggressive form of uterine cancer... uterine papillary serous carcinoma. The pathology reports started off wonderfully...no other gyn organs were involved NOR were my lymph nodes affected. Great news! Here comes the however...two "dots" were found ON my colon during the surgery...they were uterine cells. My gyn-oncologist refers to these cells as "goofy" cells that do not follow any of the uterine cancer cell rules. So, they are treated aggressively and as if they were ovarian cancer. I have followed my medical oncologist recommendation of an 18 week, 6 cycle regimin of carboplatin (every 3weeks) and taxol (every week). After this I will also require internal radiation. I started chemo 2 weeks on (4/28) and luckily have experienced few side effects. Tomorrow is Week 3 of Cycle 1...Taxol.

    I would appreciate being directed to the most current board, if this is not it, since I have already gathered so much information from all of the postings I've more haphazardly located. Thanks.

    JJ
  • Ro10
    Ro10 Member Posts: 1,561 Member

    Newly diagnosed
    Is there a more current UPSC board? I'm new to all of this and keep getting bogged down in the searching.

    Due to spotting on Feb. 28, 2010, I had an endometrial biopsy on March 1 and was diagnosed with cancer on March 4th. I, too, have the rare and aggressive form of uterine cancer... uterine papillary serous carcinoma. The pathology reports started off wonderfully...no other gyn organs were involved NOR were my lymph nodes affected. Great news! Here comes the however...two "dots" were found ON my colon during the surgery...they were uterine cells. My gyn-oncologist refers to these cells as "goofy" cells that do not follow any of the uterine cancer cell rules. So, they are treated aggressively and as if they were ovarian cancer. I have followed my medical oncologist recommendation of an 18 week, 6 cycle regimin of carboplatin (every 3weeks) and taxol (every week). After this I will also require internal radiation. I started chemo 2 weeks on (4/28) and luckily have experienced few side effects. Tomorrow is Week 3 of Cycle 1...Taxol.

    I would appreciate being directed to the most current board, if this is not it, since I have already gathered so much information from all of the postings I've more haphazardly located. Thanks.

    JJ

    Welcome JJ
    Sorry you have had to join our group. I understand your statement about this board being difficult to search. This particular posting is very long. If you type in key words to the search box, you may find posting that are of interest to you. Otherwise you can start a new discussion and ask your questions, and others will address that discussion topic.

    I am glad you are tolerating your chemo with few side effects. I hope that continues throughout the 18 weeks. You are one of the few that have been getting taxol every week. Most of us had the taxol, carboplatin every 3 weeks. It will be interesting to hear what your response will be to the weekly taxol.

    What stage did they classify you at with 2 dots on your colon. I was diagnosed at Stage III-C as I had lymph node involvement and metastic cells in the abdominal washing.

    Good luck with the rest of your treatments. In peace and caring.
  • Always Hopeful
    Always Hopeful Member Posts: 234
    Ro10 said:

    Welcome JJ
    Sorry you have had to join our group. I understand your statement about this board being difficult to search. This particular posting is very long. If you type in key words to the search box, you may find posting that are of interest to you. Otherwise you can start a new discussion and ask your questions, and others will address that discussion topic.

    I am glad you are tolerating your chemo with few side effects. I hope that continues throughout the 18 weeks. You are one of the few that have been getting taxol every week. Most of us had the taxol, carboplatin every 3 weeks. It will be interesting to hear what your response will be to the weekly taxol.

    What stage did they classify you at with 2 dots on your colon. I was diagnosed at Stage III-C as I had lymph node involvement and metastic cells in the abdominal washing.

    Good luck with the rest of your treatments. In peace and caring.

    Thanks for your response, Ro.
    You are so right about this being a long posting. I have listed it as a favorite and then find that clicking to the last page is the most expedient way of reading new entries. Thanks for you suggestions, too.

    Yesterday (Wednesday, 5/5/10), I completed the first cycle of my six cycles of chemo. My white blood count was just below the normal level but my medical oncologist OK'd the Taxol treatment. I am, though, scheduled for another blood test on Monday, after which a decision will be made about how to proceed. As the nurse explained to be, I am not a candidate for Neulasta since it is slower acting over 14 days and is prescribed for those on the 3 week regimin since you need to be off treatment for the 14 days. Neupogen might be a possibility. The chemo nurse felt that the carboplatin was more of the reason for the dropped count than the taxol. I will know more after Monday, I guess.

    The decision to go with the taxol every three weeks was my choice based on the recommendation of the medical oncologist. She explained the more traditional protocol of every three weeks but then stated that current research has led to the protocol that I agreed to...more effective, less side effects. At first I thought it was the regular dose divided by 3 and administered over each week. What I did find out was that more of the Taxol is being given each week than just 1/3. Thankfully, other than flushing on the second day from the Decotron which by the way makes me eat like a beast, I still have not experienced any terrible side effects. My premeds must be controlling that.

    Pre meds: each week -- decodron, pecid, benedryl (all IV)
    In addition: Carbo week -- Emend (one pill administered pre chemo, one pill taken each day for the next two days. (Emend is taken during Taxol only week.)
    Taxol week -- Reglan (IV), pills to take at home, every six hours as needed. Only took one after the first week.

    As far as my stagine goes, my gyn-oncologist, as well as the medical oncologist, have explained the difficulty in staging this. I need to verify this again. The gyn-onc refers to the serous cells as being "goofy" cells that do not play by any of the rules of usual uterine cancer cells. Even though none of my other gyn organs were involved, nor were my lymph nodes or channels, since the cells were found on my colon, an aggressive approach needs to be taken. As she said, "Other cells might be floating around and we do not want them to find a home." My feelings, "If they were there, they could be elsewhere...therefore, let's get them, if they are there."

    Radiation will follow the chemo. The gyn-oncologist believes in dealing with one thing at a time so we have not gone into great detail about this. Initially I was somewhat taken aback by this but have come to realize that it takes so much energy to absorb and understand things that are happening now. However, she is forthcoming with any questions I do have.

    One of the major issues I am now dealing with involves my job. As a NYC middle school teacher, I have almost enough sick days accumulated to get me through the rest of this school year. I am also blessed with dear friends who are willing and able (according to the guidelines) to donate some of their days to make up the difference. My chemo treatments, if everything goes according to schedule, will end the end of August, to be followed by internal radiation. I have begun to explore the possiblities that exist for me for the next school year and am toying with applying for a Restoration of Health Sabbatical at 60% pay. This will enable me to stay on payroll with my current benefits. Although I believe in always being hopeful, the reality is that only time will tell when that hopeful wish has been realized. I don't really know much about the radiation's effect or, for that matter, how I will tolerate the rest of the chemo. Some have mentioned Social Security Disability to me but from what I have researched, I don't think I fit the criteria, nor am I sure it is best for me at this time. I would appreciate hearing from anyone who might have investigated this further.

    Well, Ro, this has become a rather long posting. I might, as you suggested, cut and paste it into a new discussion thread.

    Thank you so much for responding to my posting. I wish you continued health and peace...JJ
  • boo.brantley
    boo.brantley Member Posts: 1
    New Warrior on the Front Lines
    My beautiful wife was diagnosed with UPSC in March 2010. Her tumor was very large and situated so that surgery was not possible. 3 rounds of carboplatin/paclitaxel later the ct scan showed a significant shrinkage and surgery was scheduled for a June 1, 4 weeks later. Surgery revealed Stage IV, Grade 3, with a metastasis to omentum, which was not removed in the radical hysterectomy. She is recovering well from surgery. We are seeking a radiology oncologist to guide us through the radio therapy world. Hopefully we can find a doctor to do another round of chemo therapies. Any suggestions in choosing a good oncologist for the continuation of the battle? Does anyone know anything about the use of monometric or fractional chemo in the fight of this particular type of uterine cancer?
  • daisy366
    daisy366 Member Posts: 1,458 Member

    New Warrior on the Front Lines
    My beautiful wife was diagnosed with UPSC in March 2010. Her tumor was very large and situated so that surgery was not possible. 3 rounds of carboplatin/paclitaxel later the ct scan showed a significant shrinkage and surgery was scheduled for a June 1, 4 weeks later. Surgery revealed Stage IV, Grade 3, with a metastasis to omentum, which was not removed in the radical hysterectomy. She is recovering well from surgery. We are seeking a radiology oncologist to guide us through the radio therapy world. Hopefully we can find a doctor to do another round of chemo therapies. Any suggestions in choosing a good oncologist for the continuation of the battle? Does anyone know anything about the use of monometric or fractional chemo in the fight of this particular type of uterine cancer?

    Find a gynecologic oncologist
    Many oncologists are unfamiliar with this rare and aggressive cancer. Find an experienced gyn-oncologist to guide you. And get a second opinion or more if necessary.

    I am pursuing alternative treatment (healing touch, massage, yoga, diet) along with standard western medicine. Check with your docs about any dietary change while getting chemo.

    Best wishes to you and your wife. This site is a good support and information resource.

    Mary Ann
  • Ro10
    Ro10 Member Posts: 1,561 Member

    New Warrior on the Front Lines
    My beautiful wife was diagnosed with UPSC in March 2010. Her tumor was very large and situated so that surgery was not possible. 3 rounds of carboplatin/paclitaxel later the ct scan showed a significant shrinkage and surgery was scheduled for a June 1, 4 weeks later. Surgery revealed Stage IV, Grade 3, with a metastasis to omentum, which was not removed in the radical hysterectomy. She is recovering well from surgery. We are seeking a radiology oncologist to guide us through the radio therapy world. Hopefully we can find a doctor to do another round of chemo therapies. Any suggestions in choosing a good oncologist for the continuation of the battle? Does anyone know anything about the use of monometric or fractional chemo in the fight of this particular type of uterine cancer?

    I too recommend you find a gynecological onocologist
    Welcome to the site, but sorry to hear of your wife's diagnosis. I had 3 chemo treatments and then radiation and then 3 more chemo treatments. They call this the sandwich treatment. I had my surgery before the treatments though. I was diagnosed with UPSC Stage 3-C. Some people on this board have had the fractional chemo. One for a recurrence, and some as intial treatment. Most have had the chemo every 3 weeks.

    Glad your wife is recovering well from her surgery. You will both remain in my prayers. Looking forward to further posts from you or your wife when she is up to writing. In peace and caring.
  • phyllisj
    phyllisj Member Posts: 2
    Ro10 said:

    I too recommend you find a gynecological onocologist
    Welcome to the site, but sorry to hear of your wife's diagnosis. I had 3 chemo treatments and then radiation and then 3 more chemo treatments. They call this the sandwich treatment. I had my surgery before the treatments though. I was diagnosed with UPSC Stage 3-C. Some people on this board have had the fractional chemo. One for a recurrence, and some as intial treatment. Most have had the chemo every 3 weeks.

    Glad your wife is recovering well from her surgery. You will both remain in my prayers. Looking forward to further posts from you or your wife when she is up to writing. In peace and caring.

    Also diagnosed with UPSC
    I started this journey in April 2008 but unfortunately only found this site in Nov 2009 when I had my 1st reoccurrence. It came back very heavily as it was not picked up for about 5 months. ( I'm in Montreal, Canada and as you may know we have Medicare. As a result, everything is paid for, which is very nice, but at the same time we do not have enough Drs. or money for the system to actually have the most timely delivery of services at all times.)

    In any case, what I'm really curious to know is if anyone else is now similarly dealing with reoccurrence and if so, what chemo etc. are you receiving? I am now a stage 3, although after hysterectomy back in June 2008, I was stage1b. With the reoccurrence, I was put on carboplatin and caelex for an indeterminant number of rounds once a month. Next week I get #8 and am also scheduled for #9 on July23. I will then have another Pet/CT scan which will help them to decide where to go from there. My last Pet/CT, in April 2010, showed a good reduction of metastacies but also showed 3 new "spots".

    Thanks for all the wonderful posts. I haven't read them all but they were very informative.
    Best to all.
  • Nina_Canada
    Nina_Canada Member Posts: 1
    phyllisj said:

    Also diagnosed with UPSC
    I started this journey in April 2008 but unfortunately only found this site in Nov 2009 when I had my 1st reoccurrence. It came back very heavily as it was not picked up for about 5 months. ( I'm in Montreal, Canada and as you may know we have Medicare. As a result, everything is paid for, which is very nice, but at the same time we do not have enough Drs. or money for the system to actually have the most timely delivery of services at all times.)

    In any case, what I'm really curious to know is if anyone else is now similarly dealing with reoccurrence and if so, what chemo etc. are you receiving? I am now a stage 3, although after hysterectomy back in June 2008, I was stage1b. With the reoccurrence, I was put on carboplatin and caelex for an indeterminant number of rounds once a month. Next week I get #8 and am also scheduled for #9 on July23. I will then have another Pet/CT scan which will help them to decide where to go from there. My last Pet/CT, in April 2010, showed a good reduction of metastacies but also showed 3 new "spots".

    Thanks for all the wonderful posts. I haven't read them all but they were very informative.
    Best to all.

    My Mom has UPSC
    Hi,

    My mother who is 74, and in excellent general condition, was diagnosed with UPSC and was operated on February 1st. She was stage 3C, at least that's what they are saying. She started quickly on carboplatin/Taxol chemo for 6 cycles. She had a PET scan just before her 4th cycle, which showed 4 tumors still in her abdomen.

    She finished her 6 rounds of chemo, and then had another PET scan, which showed the exact 4 tumors, at the exact size they were in. It seems they did not shrink from the chemo, but remained the same.

    Her oncologist directed her to the surgeon for resection of the tumors, but the surgeon asked for something called a Diffusion MRI, does anybody know about this? The news from the diffusion MRI was horrible. She has over 6 tumors in her abdomen, one located inside her colon. she is in constant abdominal pain, and there is fear for her liver because two tumors are located one in front of and one behind the liver. The Chemo was totally inefective in shrinking the tumors, only kept them at a standstill. Once the effect was off and she starte having hair growth, the cancer started very agressively to grow in her abdomen.

    The surgeon said that because the cancer is so spread, it is not possible to operate her. Her oncologist established another regimen of Gemcitabine and Docetaxel to be taken every 21 days, for an undetermined number of cycles. On day 8 of every cycle, she takes Gemcitabine again.

    I am really worried about my mom. I have read and researched Gemcitabine and Docetaxel repeatedly, but didn't find any reference to them being used for UPSC. I find them often linked to Sarcoma, but not to UPSC. Does anybody know about this?

    Thank you so much for your site, and for the beautiful positive messages contained in it. You give us all hope. I will keep all of you in my prayers.

    Nina