UPSC reoccurrence

nancylego
nancylego Member Posts: 17
edited March 2014 in Uterine/Endometrial Cancer #1
Hello all,
My mom was diagnosed with UPSC and she finished her last carbo/ taxol chemo treatment on 03/09. She was told NED after 6 treatments. Her CA125 was 9 and she had pet scan. Today, we found out that her CA125 jumped to 1000 and the doctor assured us that her cancer recurred. She will have her scan done next week.
We are very shocked that the reoccurrence happened quickly in 4 months.
Does anyone advise other type of chemo treatment for this cancer?
Please help!
«13

Comments

  • deanna14
    deanna14 Member Posts: 732
    #2
    Waiting...
    I too have UPSC. I finished chemo on June 10, my scan on July 1 showed a possible reoccurance in 2 lymph nodes. I am waiting to hear results of a biopsy. I don't know yet what treatment the doctor will recommend if it is a reoccurance. I too was shocked that it was a possiblity only 3 weeks after my last treatment.
    Hang in there and keep fighting this. May God bless you and your mother.
    Hugs and prayers!
  • Fran60
    Fran60 Member Posts: 19
    #3
    deanna14 said:

    Waiting...
    I too have UPSC. I finished chemo on June 10, my scan on July 1 showed a possible reoccurance in 2 lymph nodes. I am waiting to hear results of a biopsy. I don't know yet what treatment the doctor will recommend if it is a reoccurance. I too was shocked that it was a possiblity only 3 weeks after my last treatment.
    Hang in there and keep fighting this. May God bless you and your mother.
    Hugs and prayers!

    I truly have a hard time navegating in this discussion board, but maybe I have figured out how to comment now.

    I have a reoccurance of UPSC and I have received my 3rd round of taxol/carboplatinum. I get the feeling there is no other treatment. It is in my lungs now and I have a constant discomfort when wearing my bra which must be related somehow. I would give anything if the Drs. and medical world had a better prognosis for this. I am always looking for more positive information. I am going to UC Davis for a 2nd opinion next Tues 7/21, but not really believing I will learn that much. I am always open to any info you might have and my heart goes out to you who are dealing with this or any other kind of cancer. I am praying our God has a mighty hand over these Drs. and how they treat us.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #4
    Funtional profile?
    Wow - what a shock. I finished my chemo just a month before your mother!!!

    I'd check with your onc to find out if a functional profile was done of the tissue. This tells what chemo the cancer responds to.

    I hope the CA125 is wrong!!!! and the scan tells a different story. I will pray for your mother and you. My best wishes,

    Mary Ann
  • Mimi25
    Mimi25 Member Posts: 13
    #5
    target treatments for PS cancer
    I originally found a group of ladies discussing UPS on this site and joined in order to be a part of this group. For some reason, I have not been allowed to be a part of them.
    If any of you are still having discussions, please let me know.

    I, also, have recurrent PS after 6 sessions of taxol/carboplatin. As I did research, I decided that one of the new targeted therapies was the way to go. Fortunately, that was the first thing my doctor suggested and is now about to do a laproscopic surgery to obtain new specimens to send to a lab in AZ for MOLECULAR TESTING. Even with all my research and calling various top hospitals, NO ONE told me there was the ability to do this!!!!
    I am hoping that one of the new targeted therapies will keep my cancer at bay long enough for even newer therapies! Strides are being made daily and I intend to fight as long as I am able.

    Is anyone out there in treatment with any of the new therapies...ie sunitinib, VEGF trap, Gleeec, etc.

    Good luck to us all and keep fighting!

    Mimi25
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #6
    Mimi25 said:

    target treatments for PS cancer
    I originally found a group of ladies discussing UPS on this site and joined in order to be a part of this group. For some reason, I have not been allowed to be a part of them.
    If any of you are still having discussions, please let me know.

    I, also, have recurrent PS after 6 sessions of taxol/carboplatin. As I did research, I decided that one of the new targeted therapies was the way to go. Fortunately, that was the first thing my doctor suggested and is now about to do a laproscopic surgery to obtain new specimens to send to a lab in AZ for MOLECULAR TESTING. Even with all my research and calling various top hospitals, NO ONE told me there was the ability to do this!!!!
    I am hoping that one of the new targeted therapies will keep my cancer at bay long enough for even newer therapies! Strides are being made daily and I intend to fight as long as I am able.

    Is anyone out there in treatment with any of the new therapies...ie sunitinib, VEGF trap, Gleeec, etc.

    Good luck to us all and keep fighting!

    Mimi25

    Yes, we are still here Mimi
    Many of the people who regularly post have UPSC. I am one of them.

    I'm interested in your experience of recurrence. How many recurrences have you had - what happened and when? Have you checked out any clinical trials??

    I have stage 3a and completed my initial treatment (6 rounds of carbo/taxol) in Feb 09. My dr. is not recommending radiation for several reasons and I am comfortable with this. I am in surveillance - my CA125 will be checked every 2 months.

    They are doing HER2 testing on my tissue now - in case I will need this info for additional treatment in the future. What type of molecular testing will they be doing? I am not familiar with the new therapies you mentioned. I am interested to learn more if you can direct me to any research or articles.

    Thanks for any info you can provide. Best wishes to you.

    Mary Ann aka Daisy
  • nancylego
    nancylego Member Posts: 17
    #7
    MOLECULAR TESTING???
    Thank you so much for sharing your experiences. It means a lot to talk to other people who are going through same difficult journeys. Like Mary Ann, my mom was stage 3 when she was first dx. Her cancer responded well when took carbo/ taxol. The CA125 normalized after the second treatment. It is just the fast recurrence (in 4 months) that was hard to believe. She did not take radiation too. Her doctor and all the other doctors with second opinion said no.
    Her doctor suggested another combination of chemo for this recurrence. But she is very reluctant to take another chemo b/c she still is suffering with past chemo side effects. Her major complain is neuropathy.

    Mimi, so we are very interested to find out about the new therapies. Please direct us to your new findings and researches. My mom's doctor did not mention that. Are the therapies you mentioned molecular or hormonal therapies? Where can we get detail?

    Thank you and God Bless
  • Mimi25
    Mimi25 Member Posts: 13
    #8
    nancylego said:

    MOLECULAR TESTING???
    Thank you so much for sharing your experiences. It means a lot to talk to other people who are going through same difficult journeys. Like Mary Ann, my mom was stage 3 when she was first dx. Her cancer responded well when took carbo/ taxol. The CA125 normalized after the second treatment. It is just the fast recurrence (in 4 months) that was hard to believe. She did not take radiation too. Her doctor and all the other doctors with second opinion said no.
    Her doctor suggested another combination of chemo for this recurrence. But she is very reluctant to take another chemo b/c she still is suffering with past chemo side effects. Her major complain is neuropathy.

    Mimi, so we are very interested to find out about the new therapies. Please direct us to your new findings and researches. My mom's doctor did not mention that. Are the therapies you mentioned molecular or hormonal therapies? Where can we get detail?

    Thank you and God Bless

    Targeted therapies
    Wow! Such fast responses. I'm glad I can help.

    I subscribe to the magazine "Cure", which I originally found in my doctor's office. It has been a wonderful source of information. Every so often, they publish a Special Issue.
    The last one I received was in 2008, which had fantastic information, including a terrific article on the new targeted therapies. Go online to www.curetoday.com to see back issues. To subscribe, 1-800-210-cure.

    The article in the special edition was called "Cancer Therapy's Many Targets, pp24-27. BUT, there is so much more information, too. The targeted drugs are listed in various categories: Angiogenesis inhibitors (2 of which have clinical trials for recurrent endometrial CA. Sutent (sunitinib) and VEGF Trap (aflibercept), which JUST closed this week. The problem with clinical trials is that most of them are for ovarian cancer. Although my PS has been treated as though it is ovarian, I am not eligible for those trials. The other problem with them is that you have to live in the area of the trials)
    Some of the other categories are mTOR inhibitors (haven't found trials for these), HER family inhibitors, and others. Some of these are infusion drugs and some pills. As they are targeted, the side effects shouldn't be as bad as regular chemotherapy.

    In answer to one of you, I, too, had neuropathy by the time I finished my 6 treatments.
    When I was able, I started doing some really intensive walking. I don't know if that is what did it or enough time had passed, but after 8 months, my neuropathy was GONE!!!

    I can't answer all of your questions about the molecular testing yet, as mine has not been done. I was originally tested with the Oncogene tests, which gave my doctor a good profile of my cancer. However, as cancer mutates with the use of chemo, he is now going to take samples of my new "spots" for the molecular testing. This will be done on the 30th and should take about 10 days for the results to come back. I will get a copy of the report and will relay the name and place of the lab to you all.

    My doctor had originally told me that if my cancer came back within the first few years it would mean that my CA was resistant to chemo. As he now said I should be tested for the targeted drugs, I agreed that was the best course at this point. The drugs are still too new for statistical analysis, I don't know how successful they have been. However, as a few of them are in Phase II, that may mean that there HAS been at least some initial success.

    I don't remember what some of the other questions were, but hope this answers most and is of some help. I hope that someone else who has taken/is taking one of these drugs will repond with her experience.

    Take care, Mimi
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #9
    Mimi25 said:

    Targeted therapies
    Wow! Such fast responses. I'm glad I can help.

    I subscribe to the magazine "Cure", which I originally found in my doctor's office. It has been a wonderful source of information. Every so often, they publish a Special Issue.
    The last one I received was in 2008, which had fantastic information, including a terrific article on the new targeted therapies. Go online to www.curetoday.com to see back issues. To subscribe, 1-800-210-cure.

    The article in the special edition was called "Cancer Therapy's Many Targets, pp24-27. BUT, there is so much more information, too. The targeted drugs are listed in various categories: Angiogenesis inhibitors (2 of which have clinical trials for recurrent endometrial CA. Sutent (sunitinib) and VEGF Trap (aflibercept), which JUST closed this week. The problem with clinical trials is that most of them are for ovarian cancer. Although my PS has been treated as though it is ovarian, I am not eligible for those trials. The other problem with them is that you have to live in the area of the trials)
    Some of the other categories are mTOR inhibitors (haven't found trials for these), HER family inhibitors, and others. Some of these are infusion drugs and some pills. As they are targeted, the side effects shouldn't be as bad as regular chemotherapy.

    In answer to one of you, I, too, had neuropathy by the time I finished my 6 treatments.
    When I was able, I started doing some really intensive walking. I don't know if that is what did it or enough time had passed, but after 8 months, my neuropathy was GONE!!!

    I can't answer all of your questions about the molecular testing yet, as mine has not been done. I was originally tested with the Oncogene tests, which gave my doctor a good profile of my cancer. However, as cancer mutates with the use of chemo, he is now going to take samples of my new "spots" for the molecular testing. This will be done on the 30th and should take about 10 days for the results to come back. I will get a copy of the report and will relay the name and place of the lab to you all.

    My doctor had originally told me that if my cancer came back within the first few years it would mean that my CA was resistant to chemo. As he now said I should be tested for the targeted drugs, I agreed that was the best course at this point. The drugs are still too new for statistical analysis, I don't know how successful they have been. However, as a few of them are in Phase II, that may mean that there HAS been at least some initial success.

    I don't remember what some of the other questions were, but hope this answers most and is of some help. I hope that someone else who has taken/is taking one of these drugs will repond with her experience.

    Take care, Mimi

    Thanks for the info, Mimi.
    I
    Thanks for the info, Mimi.

    I will check out that article in The Cure - I am a recent subscriber. It has great info in it. My neuropathy is gradually lessening with time - I'm also walking and taking B12.

    Keep us posted on your testing.

    Mary Ann
  • nancylego
    nancylego Member Posts: 17
    #10
    Targeted theraphies
    Thank you Mimi for all the detail. It is very helpful. Please also post your test result. Are you taking any treatments right now for your recurrence while they are doing the test?
    Also, have your doctor decided which targeted therapy you will get or will that be determined after the test result?
  • Mimi25
    Mimi25 Member Posts: 13
    #11
    nancylego said:

    Targeted theraphies
    Thank you Mimi for all the detail. It is very helpful. Please also post your test result. Are you taking any treatments right now for your recurrence while they are doing the test?
    Also, have your doctor decided which targeted therapy you will get or will that be determined after the test result?

    Targeted therapy
    I am not currently taking anything. The PET scans were taken end of June and I should be back into some type of chemo (targeted or not) by the middle of Aug. My biopsy is scheduled for next week and then it will take about 10 days for the report to come back.
    I am praying that it shows my cancer is susceptible to one or more of the new targeted drugs.
    Mimi
  • Mimi25
    Mimi25 Member Posts: 13
    #12
    daisy366 said:

    Funtional profile?
    Wow - what a shock. I finished my chemo just a month before your mother!!!

    I'd check with your onc to find out if a functional profile was done of the tissue. This tells what chemo the cancer responds to.

    I hope the CA125 is wrong!!!! and the scan tells a different story. I will pray for your mother and you. My best wishes,

    Mary Ann

    SW FL
    Mary Ann/Daisy: Looks like we are both in SW FL. I'm in Ft Myers and would love to connect in person.
    Mimi
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #13
    Mimi25 said:

    SW FL
    Mary Ann/Daisy: Looks like we are both in SW FL. I'm in Ft Myers and would love to connect in person.
    Mimi

    Hi MIMI
    Mimi, let's connect! email me at tturfman@comcast.net
  • bonniesue
    bonniesue Member Posts: 124 Member
    #14
    Mimi25 said:

    Targeted therapy
    I am not currently taking anything. The PET scans were taken end of June and I should be back into some type of chemo (targeted or not) by the middle of Aug. My biopsy is scheduled for next week and then it will take about 10 days for the report to come back.
    I am praying that it shows my cancer is susceptible to one or more of the new targeted drugs.
    Mimi

    mimi25
    Mimi, my thoughts and prayers are with you.
  • Mimi25
    Mimi25 Member Posts: 13
    #15
    Targeted therapies
    Mimi here again. My surgery went well and I am now waiting for my reports. I will have my new tumors retested by Oncotech. After chemo, the cancer mutates and the doctor wants to see what, if any, differences there are now.
    In addition, they will undergo molecular testing to see if certain markers are "overexpressed". This will lead them to particular targeted drugs which may work for MY tumors (drugs such as Avastin, Sutent, etc)
    As soon as I receive the report, I will forward the name of the lab. All I know is that it is in AZ.
    My original testing was done by Oncotech, Tustin, CA, 1-800-662-6832, and was called
    "Prognostic and Predictive Marker Report". It tested for DNA (ploidy and Index) and S-phase fraction, in addition to HER2, Estrogen receptor, Progesterone Receptor, p53 Gene Product and Angiogenesis/CD31. A Drug Resistance Assay was also done at the same facility.
    In addition, my cancer was originally tested by Precision Therapeutics in Pittsburgh, PA,
    1-800-547-6165. This test was a "ChemoFx Assay". It showed whether my tumors were
    responsive or non-responsive to a medly of regular (not targeted) chemo drugs...taxol, carboplatin, etc. This was similar to the Drug Resistance Assay done by Oncotech.
    In 2 weeks I should have my new information, along with my doctor's recommendation on the way to go at this point. I will forward it, as soon as I know.
    Take care, Mimi
  • deanna14
    deanna14 Member Posts: 732
    #16
    Fran60 said:

    I truly have a hard time navegating in this discussion board, but maybe I have figured out how to comment now.

    I have a reoccurance of UPSC and I have received my 3rd round of taxol/carboplatinum. I get the feeling there is no other treatment. It is in my lungs now and I have a constant discomfort when wearing my bra which must be related somehow. I would give anything if the Drs. and medical world had a better prognosis for this. I am always looking for more positive information. I am going to UC Davis for a 2nd opinion next Tues 7/21, but not really believing I will learn that much. I am always open to any info you might have and my heart goes out to you who are dealing with this or any other kind of cancer. I am praying our God has a mighty hand over these Drs. and how they treat us.

    Fran60
    Just wondering how your 2nd opinion went from UC Davis?
  • Mimi25
    Mimi25 Member Posts: 13
    #17
    Mimi25 said:

    Targeted therapies
    Mimi here again. My surgery went well and I am now waiting for my reports. I will have my new tumors retested by Oncotech. After chemo, the cancer mutates and the doctor wants to see what, if any, differences there are now.
    In addition, they will undergo molecular testing to see if certain markers are "overexpressed". This will lead them to particular targeted drugs which may work for MY tumors (drugs such as Avastin, Sutent, etc)
    As soon as I receive the report, I will forward the name of the lab. All I know is that it is in AZ.
    My original testing was done by Oncotech, Tustin, CA, 1-800-662-6832, and was called
    "Prognostic and Predictive Marker Report". It tested for DNA (ploidy and Index) and S-phase fraction, in addition to HER2, Estrogen receptor, Progesterone Receptor, p53 Gene Product and Angiogenesis/CD31. A Drug Resistance Assay was also done at the same facility.
    In addition, my cancer was originally tested by Precision Therapeutics in Pittsburgh, PA,
    1-800-547-6165. This test was a "ChemoFx Assay". It showed whether my tumors were
    responsive or non-responsive to a medly of regular (not targeted) chemo drugs...taxol, carboplatin, etc. This was similar to the Drug Resistance Assay done by Oncotech.
    In 2 weeks I should have my new information, along with my doctor's recommendation on the way to go at this point. I will forward it, as soon as I know.
    Take care, Mimi

    Molecular testing facility
    I just received the following information:

    Caris Dx of Phoenix, AZ, tel: 1-800-901-5177 has a program called "Target Now", www.targetnow.com. I imagine it will give you all the information you need.

    This is the facility which is doing the molecular profiling of my tumors.

    Good luck, Mimi
  • nancylego
    nancylego Member Posts: 17
    #18
    Thanks, Mimi for the info.
    Thanks, Mimi for the info. We will bring this up to the oncologist. He recommended another drug combo. He did not mention targeted therapies on our prior meetings. We found out that my mom has multiple relapses in her abdomen and pelvis.
    I am glad your surgery went well. I hope they will find the best one for you. Please keep us on the loop about your results.
  • Unknown
    Unknown
    #19
    This comment has been removed by the Moderator
  • Mimi25
    Mimi25 Member Posts: 13
    #20
    unknown said:

    This comment has been removed by the Moderator

    Answer to Patricia
    Yes, I have UPSC 3a. Hysterectomy Jan 07, recurrance Apr 08, MAJOR debulking surgery
    followed by 6 rounds Taxol/Carboplatin. PET scan end of June 09 found another recurrance.
    Just had laproscopic surgery to remove the largest of the tumors for further testing.
    Will start another series of chemos soon. Waiting for results of tests to see which may be best for me at this time.
    I am lucky to be on Medicare, along with BCBS supplement.
    Take care,
    Mimi
  • Unknown
    Unknown
    #21
    Mimi25 said:

    Answer to Patricia
    Yes, I have UPSC 3a. Hysterectomy Jan 07, recurrance Apr 08, MAJOR debulking surgery
    followed by 6 rounds Taxol/Carboplatin. PET scan end of June 09 found another recurrance.
    Just had laproscopic surgery to remove the largest of the tumors for further testing.
    Will start another series of chemos soon. Waiting for results of tests to see which may be best for me at this time.
    I am lucky to be on Medicare, along with BCBS supplement.
    Take care,
    Mimi

    This comment has been removed by the Moderator

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