UPSC diagnosed July 2010 - 2 surgeries, 2 chemos 2 radiations

Hello,

Anyone out there with UPSC spread to liver? My latest CT scan shows this has happened. onc/gyn nurse says I can have no more radiation and no more Carbo/Taxol. Maxed out on those. I am healthy otherwise except for the cumulative side effects of the 2 surgeries, 2 chemos, and 2 radiations. All this in the past two years has taken my previously super strong body to about 45%. Tomorrow onc/gyn reviews further options. So. I must weigh further decline with more chemo or...

Anyone have a comment? Would be nice to hear any. I hope my situation is not so dire that folks will be unwilling to respond. I understand that and that's okay, too.

Golda

Comments

  • txtrisha55
    txtrisha55 Member Posts: 693
    Sorry to hear of your

    Sorry to hear of your recurrance. There are a lot of women on this site that have and are still going through different rounds of chemo treatments and are on their 2 and 3 round of recurrance. I cannot image that your dr has said no more chemo or is it just that chemo she does not want you to have again. But if it worked why not use it again? Good Luck on finding the answer and working on a third choice of treatment. Will add you to my prayer list. trish
  • CaCowgirl
    CaCowgirl Member Posts: 27

    Sorry to hear of your

    Sorry to hear of your recurrance. There are a lot of women on this site that have and are still going through different rounds of chemo treatments and are on their 2 and 3 round of recurrance. I cannot image that your dr has said no more chemo or is it just that chemo she does not want you to have again. But if it worked why not use it again? Good Luck on finding the answer and working on a third choice of treatment. Will add you to my prayer list. trish

    I am sorry to hear of your
    I am sorry to hear of your diagnosis. And that the previous treatments did you so much harm. I opted not to have any treatments after my surgery. After two years-I'm still ok. I will add you to my prayers.
  • ConnieSW
    ConnieSW Member Posts: 1,613 Member
    What does your oncologist
    What does your oncologist say? Are you willing to consider a trial? I wish I were more knowledgable. Please know I am thinking about you and hoping you will find something. Do keep us updated. Hang on.
  • ConnieSW
    ConnieSW Member Posts: 1,613 Member
    What does your oncologist
    Duplicate
  • nempark
    nempark Member Posts: 681
    Golda there must be something!!!!!
    Hang in there my friend, there must be something that they can do for you. Do not give up. Get a second opinion. Please let us know how you are doing.
  • Goldamillie
    Goldamillie Member Posts: 26
    nempark said:

    Golda there must be something!!!!!
    Hang in there my friend, there must be something that they can do for you. Do not give up. Get a second opinion. Please let us know how you are doing.

    Thanks everyone
    Today ONC/GYN says we will start chemo 2wks of treatment with 2 weeks off - with Genzar/carboplatin and try to contain/shrink it in the liver. Enough taxol for now I guess - that chemo is truly toxic for me. I need to recover from the radiation treatments. They are the worst on the body - duh?? Couldn't I have just hugged a nuclear warhead??? Just kidding.

    Sorely miss my former firecracker energy! Kind of ticks me off, ya know?

    UPSC is a sneaky mean little bugger of a cancer and hard to deal with as there is not a whole lot of research because it is kind of rare.
  • Goldamillie
    Goldamillie Member Posts: 26
    CaCowgirl said:

    I am sorry to hear of your
    I am sorry to hear of your diagnosis. And that the previous treatments did you so much harm. I opted not to have any treatments after my surgery. After two years-I'm still ok. I will add you to my prayers.

    Stage IIIc
    Did you have Stage IIIc? It had already spread to a couple of lymph nodes and that is the kicker! Try as we might, so far, it keeps traveling - such is late stage UPSC.

    Glad you caught yours early and hope you are clear for the next 50 years! :o)
  • Goldamillie
    Goldamillie Member Posts: 26
    ConnieSW said:

    What does your oncologist
    What does your oncologist say? Are you willing to consider a trial? I wish I were more knowledgable. Please know I am thinking about you and hoping you will find something. Do keep us updated. Hang on.

    genzar/carboplatin chemo -
    genzar/carboplatin chemo - we'll see what happens now :o)
  • Goldamillie
    Goldamillie Member Posts: 26

    Sorry to hear of your

    Sorry to hear of your recurrance. There are a lot of women on this site that have and are still going through different rounds of chemo treatments and are on their 2 and 3 round of recurrance. I cannot image that your dr has said no more chemo or is it just that chemo she does not want you to have again. But if it worked why not use it again? Good Luck on finding the answer and working on a third choice of treatment. Will add you to my prayer list. trish

    Hey, Trish
    dr didn't say no

    Hey, Trish

    dr didn't say no more chemo just not any carboplatin/taxol - going to start gemzar/carboplatin - it's the taxol that is a wrecking ball on the system - maybe when I have a couple of more weeks to recover from the radiation i will get some energy back - will probably have low red count, etc. this time but I have dealt handily with a small bout of that before - I guess I will get neulasta shots - don't know if that's spelled correctly, sorry

    Thanks for the thoughts and prayers - I will forge on - feel better today just knowing what the plan is -
  • daisy366
    daisy366 Member Posts: 1,458 Member

    Thanks everyone
    Today ONC/GYN says we will start chemo 2wks of treatment with 2 weeks off - with Genzar/carboplatin and try to contain/shrink it in the liver. Enough taxol for now I guess - that chemo is truly toxic for me. I need to recover from the radiation treatments. They are the worst on the body - duh?? Couldn't I have just hugged a nuclear warhead??? Just kidding.

    Sorely miss my former firecracker energy! Kind of ticks me off, ya know?

    UPSC is a sneaky mean little bugger of a cancer and hard to deal with as there is not a whole lot of research because it is kind of rare.

    Also UPSC
    Hi Golda,

    I was diagnosed in Fall '08 and now in treatment for 2nd recurrence in lymph nodes. I started out officially 3a but wonder if it was already 4 since they thought I had false positive PET which showed throughout my lymph system from beginning.

    I really can relate to the fatigue you have. I am getting doxil now - before it was carbo/taxol and then radiation and carbo and I never experienced debilitating fatigue.

    But I have been down with the doxil. And just started 2 weeks ago.

    I hope the gemzar cocktail works well for you and you can get your strength back. If that sneaky UPSC doesn't get us, I sure hope the treatment doesn't!!!

    Good luck. Hang in there. Sorry you're in this "club"

    Mary Ann
  • Goldamillie
    Goldamillie Member Posts: 26
    daisy366 said:

    Also UPSC
    Hi Golda,

    I was diagnosed in Fall '08 and now in treatment for 2nd recurrence in lymph nodes. I started out officially 3a but wonder if it was already 4 since they thought I had false positive PET which showed throughout my lymph system from beginning.

    I really can relate to the fatigue you have. I am getting doxil now - before it was carbo/taxol and then radiation and carbo and I never experienced debilitating fatigue.

    But I have been down with the doxil. And just started 2 weeks ago.

    I hope the gemzar cocktail works well for you and you can get your strength back. If that sneaky UPSC doesn't get us, I sure hope the treatment doesn't!!!

    Good luck. Hang in there. Sorry you're in this "club"

    Mary Ann

    Sigh!
    having second thoughts about Genstar/carboplatin chemo treatment. Looking back the UPSC that began (who knows when?) in my uterus and filled it up like a Santa sack, spread to a couple of lymph nodes before it announced itself by a tiny little spotting (July 2010) gave me no symptoms whatsoever and I felt great per usual. Ever since I have tried to fight it with surgeries, chemo and radiation my health/vitality has declined. It feels like the treatment destroys me more than the cancer, ya know?

    Now, because there is such little information about UPSC because of it's rarity, I am to try Gemzar or Gemstar with a little carboplatin. I am thinking maybe I could just decline the chemical treatment until my next CT scan in a couple of months so I can have some energy to enjoy the fall and holidays. Doc said tumors usually grow quickly and then level off in growth. I am coming to realize UPSC will take me out eventually. Please don't let my super realistic attitude make anyone feel down. I am just thinking perhaps it is time to stop beating up my previously strong body which TREATMENT is making a whiny irritating drag.

    Anyone have an opinion re: this idea to let my body try to recover from all the treatments - just until Jan 2013 when I get a CT scan? Remember what turned out to be liver mets began DURING my August radiation therapy (CA125 jumped from 30 (6/29 just after chemo to 60 during radiation). Most recent CA125 jumped to 240 with the CT detection of liver mets. See what I mean? Chemo -- feel worse maybe to no avail - hope this makes sense.

    thanks to everyone for hanging in there - I wish all the best -- just trying to figure out how to live the rest of my life feeling vital and not destroying what vitality I have left with chemo wishing for a miracle. Maybe a miracle is possible without chemo - see what I mean?

    Anyone ever just want to yell - Enough already!
  • daisy366
    daisy366 Member Posts: 1,458 Member

    Sigh!
    having second thoughts about Genstar/carboplatin chemo treatment. Looking back the UPSC that began (who knows when?) in my uterus and filled it up like a Santa sack, spread to a couple of lymph nodes before it announced itself by a tiny little spotting (July 2010) gave me no symptoms whatsoever and I felt great per usual. Ever since I have tried to fight it with surgeries, chemo and radiation my health/vitality has declined. It feels like the treatment destroys me more than the cancer, ya know?

    Now, because there is such little information about UPSC because of it's rarity, I am to try Gemzar or Gemstar with a little carboplatin. I am thinking maybe I could just decline the chemical treatment until my next CT scan in a couple of months so I can have some energy to enjoy the fall and holidays. Doc said tumors usually grow quickly and then level off in growth. I am coming to realize UPSC will take me out eventually. Please don't let my super realistic attitude make anyone feel down. I am just thinking perhaps it is time to stop beating up my previously strong body which TREATMENT is making a whiny irritating drag.

    Anyone have an opinion re: this idea to let my body try to recover from all the treatments - just until Jan 2013 when I get a CT scan? Remember what turned out to be liver mets began DURING my August radiation therapy (CA125 jumped from 30 (6/29 just after chemo to 60 during radiation). Most recent CA125 jumped to 240 with the CT detection of liver mets. See what I mean? Chemo -- feel worse maybe to no avail - hope this makes sense.

    thanks to everyone for hanging in there - I wish all the best -- just trying to figure out how to live the rest of my life feeling vital and not destroying what vitality I have left with chemo wishing for a miracle. Maybe a miracle is possible without chemo - see what I mean?

    Anyone ever just want to yell - Enough already!

    Goldamillie
    Well, this is a good conversation. When to treat and when not...

    Scan should spread of UPSC in lymph (2 areas) in December. Had biopsy in Jan and then tissue assay. Started hormone therapy (trying to use least invasive approach) in March. Then I worked on alternative therapies (energy healing and then diet). Along the way my ca125 crept up 10 points a month until July when it started rising more sharply. I resisted return to chemo for 2 more months while I pursued the alternative route. So hopeful. By Sept PET showed total spread in lymph system. Now I feel guilty that I waited. The alternative route did not help (maybe it did somewhat but who really knows).

    I don't know what to say. I am totally fatigued with the doxil and I'm listless. Sometimes I wonder if I will regain strength or just continue to spend my days on the couch. These are hard decisions. When is enough enough.

    In my case, it seemed that the ca125 started jumping very fast - did I wait too long? Did the UPSC get so strong that it will now go to organs? Will I be able to fight this now?

    I've turned to a yoga instructor for help. Will work on meditation to help get me more in positive mindset and focus on healing and helping me body. There is a connection I believe in mind-body.

    I wish you all kinds of health, Goldmillie. In mind and body.

    Hugs, Mary Ann
  • ConnieSW
    ConnieSW Member Posts: 1,613 Member
    daisy366 said:

    Goldamillie
    Well, this is a good conversation. When to treat and when not...

    Scan should spread of UPSC in lymph (2 areas) in December. Had biopsy in Jan and then tissue assay. Started hormone therapy (trying to use least invasive approach) in March. Then I worked on alternative therapies (energy healing and then diet). Along the way my ca125 crept up 10 points a month until July when it started rising more sharply. I resisted return to chemo for 2 more months while I pursued the alternative route. So hopeful. By Sept PET showed total spread in lymph system. Now I feel guilty that I waited. The alternative route did not help (maybe it did somewhat but who really knows).

    I don't know what to say. I am totally fatigued with the doxil and I'm listless. Sometimes I wonder if I will regain strength or just continue to spend my days on the couch. These are hard decisions. When is enough enough.

    In my case, it seemed that the ca125 started jumping very fast - did I wait too long? Did the UPSC get so strong that it will now go to organs? Will I be able to fight this now?

    I've turned to a yoga instructor for help. Will work on meditation to help get me more in positive mindset and focus on healing and helping me body. There is a connection I believe in mind-body.

    I wish you all kinds of health, Goldmillie. In mind and body.

    Hugs, Mary Ann

    Golda and Mary Anne, I hear
    Golda and Mary Anne, I hear you and I obviously have no idea what you should do. You have such hard decisions (something I've always struggled with) and whatever you decide takes great courage and strength. I wish you wisdom to guide you.

    Connie
  • beila
    beila Member Posts: 97 Member
    daisy366 said:

    Goldamillie
    Well, this is a good conversation. When to treat and when not...

    Scan should spread of UPSC in lymph (2 areas) in December. Had biopsy in Jan and then tissue assay. Started hormone therapy (trying to use least invasive approach) in March. Then I worked on alternative therapies (energy healing and then diet). Along the way my ca125 crept up 10 points a month until July when it started rising more sharply. I resisted return to chemo for 2 more months while I pursued the alternative route. So hopeful. By Sept PET showed total spread in lymph system. Now I feel guilty that I waited. The alternative route did not help (maybe it did somewhat but who really knows).

    I don't know what to say. I am totally fatigued with the doxil and I'm listless. Sometimes I wonder if I will regain strength or just continue to spend my days on the couch. These are hard decisions. When is enough enough.

    In my case, it seemed that the ca125 started jumping very fast - did I wait too long? Did the UPSC get so strong that it will now go to organs? Will I be able to fight this now?

    I've turned to a yoga instructor for help. Will work on meditation to help get me more in positive mindset and focus on healing and helping me body. There is a connection I believe in mind-body.

    I wish you all kinds of health, Goldmillie. In mind and body.

    Hugs, Mary Ann

    fatigue
    Mary Ann

    more concerning than your fatigue is your despair about it.
    Have you been EXAMINED by your MD to make sure there is nothing medical causing the fatigue (such as congestive heart failure), and just normal chemo fatigue?

    If anything serious is ruled out, I would hang in there if I were you
    Perhaps you will respond to the Doxil, the fatigue will eventually improve, (it may take months), and it will have been worth it, NO?

    Meanwhile change your lifestyle around the fatigue...eg some sort of project involving laptop, good movies, perhaps learn to knit or crochet,etc......always keeping in mind that this is temporary

    A friend of mine had this on Doxil...and then had some fatigue for 6 months...that was 5 yrs ago for a breast ca recurrence.
    In recent years she is completely back to her premorbid self...a ball of fire with an energy level like Lance Armstrong! (but without the steroids)

    my point is, 1st get medically checked for other causes of fatigue, then if neg, learn to live with it for awhile, with your eyes on the prize.
    It doesnt sound to me that this is the time for you to give up

    Just my impression,
    Beila
  • beila
    beila Member Posts: 97 Member
    daisy366 said:

    Goldamillie
    Well, this is a good conversation. When to treat and when not...

    Scan should spread of UPSC in lymph (2 areas) in December. Had biopsy in Jan and then tissue assay. Started hormone therapy (trying to use least invasive approach) in March. Then I worked on alternative therapies (energy healing and then diet). Along the way my ca125 crept up 10 points a month until July when it started rising more sharply. I resisted return to chemo for 2 more months while I pursued the alternative route. So hopeful. By Sept PET showed total spread in lymph system. Now I feel guilty that I waited. The alternative route did not help (maybe it did somewhat but who really knows).

    I don't know what to say. I am totally fatigued with the doxil and I'm listless. Sometimes I wonder if I will regain strength or just continue to spend my days on the couch. These are hard decisions. When is enough enough.

    In my case, it seemed that the ca125 started jumping very fast - did I wait too long? Did the UPSC get so strong that it will now go to organs? Will I be able to fight this now?

    I've turned to a yoga instructor for help. Will work on meditation to help get me more in positive mindset and focus on healing and helping me body. There is a connection I believe in mind-body.

    I wish you all kinds of health, Goldmillie. In mind and body.

    Hugs, Mary Ann

    fatigue
    Mary Ann

    more concerning than your fatigue is your despair about it.
    Have you been EXAMINED by your MD to make sure there is nothing medical causing the fatigue (such as congestive heart failure), and just normal chemo fatigue?

    If anything serious is ruled out, I would hang in there if I were you
    Perhaps you will respond to the Doxil, the fatigue will eventually improve, (it may take months), and it will have been worth it, NO?

    Meanwhile change your lifestyle around the fatigue...eg some sort of project involving laptop, good movies, perhaps learn to knit or crochet,etc......always keeping in mind that this is temporary

    A friend of mine had this on Doxil...and then had some fatigue for 6 months...that was 5 yrs ago for a breast ca recurrence.
    In recent years she is completely back to her premorbid self...a ball of fire with an energy level like Lance Armstrong! (but without the steroids)

    my point is, 1st get medically checked for other causes of fatigue, then if neg, learn to live with it for awhile, with your eyes on the prize.
    It doesnt sound to me that this is the time for you to give up

    Just my impression,
    Beila
  • daisy366
    daisy366 Member Posts: 1,458 Member
    beila said:

    fatigue
    Mary Ann

    more concerning than your fatigue is your despair about it.
    Have you been EXAMINED by your MD to make sure there is nothing medical causing the fatigue (such as congestive heart failure), and just normal chemo fatigue?

    If anything serious is ruled out, I would hang in there if I were you
    Perhaps you will respond to the Doxil, the fatigue will eventually improve, (it may take months), and it will have been worth it, NO?

    Meanwhile change your lifestyle around the fatigue...eg some sort of project involving laptop, good movies, perhaps learn to knit or crochet,etc......always keeping in mind that this is temporary

    A friend of mine had this on Doxil...and then had some fatigue for 6 months...that was 5 yrs ago for a breast ca recurrence.
    In recent years she is completely back to her premorbid self...a ball of fire with an energy level like Lance Armstrong! (but without the steroids)

    my point is, 1st get medically checked for other causes of fatigue, then if neg, learn to live with it for awhile, with your eyes on the prize.
    It doesnt sound to me that this is the time for you to give up

    Just my impression,
    Beila

    Beila
    You are right. I need to rule out medical problems - then go from there. Thanks for your feedback.

    Mary Ann