ANYONE WITH UPSC NOT HAVE A RECURRENCE????

13

Comments

  • RoseyR
    RoseyR Member Posts: 471 Member

    Diagnosed UPSC. Will be four years Feb 27 of 2012
    Only changed my diet and lifestyle. All medical interference refused. So far, seems to be going well.

    Cannot expect to not change any behaviors after having surgery to remove your cancerous tumor and not have your cancer return in my humble, yet highly researched opinion.

    The box is the medical standard treatment guidelines. Think outside the box.

    Claudia, Forgot ...

    Can't believe I don't know (recall?) what stage you were at diagnosis. Can you remind us of that? So glad to hear it's been nearly four years and NED. FABULOUS, Claudia.

    Love,
    Rosey
  • JoAnnDK
    JoAnnDK Member Posts: 275
    daisy366 said:

    vascular surgeon
    A vascular surgeon put my port in. I have only had raves from all nurses about my port.

    port installation
    My port was "installed" by an interventional radiologist. I did not even know that there was such a medical specialty! I was under "conscious sedation". No pain afterward.

    JoAnn
  • imackie48
    imackie48 Member Posts: 96
    JoAnnDK said:

    port installation
    My port was "installed" by an interventional radiologist. I did not even know that there was such a medical specialty! I was under "conscious sedation". No pain afterward.

    JoAnn

    My port
    I had my port installed by interventional, but I did have pain afterwards, the doc told me since I had very little skin to strech on my chest, made it hurt so much, and the doctor wouldn't give me any pain meds, told me to take Ibuprofen, I just suffered with it. still uncomfortable. Joann did you ever hear of the cream EMLA it's a lidocaine you put on just prior to chemo treatment, I haven't started mine yet but my friend told me about this cream I will ask the oncologist about it. Irene .
  • fanniemay
    fanniemay Member Posts: 53
    imackie48 said:

    My port
    I had my port installed by interventional, but I did have pain afterwards, the doc told me since I had very little skin to strech on my chest, made it hurt so much, and the doctor wouldn't give me any pain meds, told me to take Ibuprofen, I just suffered with it. still uncomfortable. Joann did you ever hear of the cream EMLA it's a lidocaine you put on just prior to chemo treatment, I haven't started mine yet but my friend told me about this cream I will ask the oncologist about it. Irene .

    I have a friend whose
    I have a friend whose daughter had a port and she said the nurses put that cream on prior to treatment....so I will be tomorrow
  • imackie48
    imackie48 Member Posts: 96
    fanniemay said:

    I have a friend whose
    I have a friend whose daughter had a port and she said the nurses put that cream on prior to treatment....so I will be tomorrow

    that's great
    good, that's just one less thing I need to worry about...Fanniemay, if you like you can send me a personal message on how your treatment goes. take care
  • imackie48
    imackie48 Member Posts: 96
    fanniemay said:

    I have a friend whose
    I have a friend whose daughter had a port and she said the nurses put that cream on prior to treatment....so I will be tomorrow

    that's great
    good, that's great one less thing I need to worry about...Fanniemay, if you like you can send me a personal message on how your treatment goes. take care
  • Gracegoi
    Gracegoi Member Posts: 59
    imackie48 said:

    that's great
    good, that's great one less thing I need to worry about...Fanniemay, if you like you can send me a personal message on how your treatment goes. take care

    Fanniemay
    Good luck tommorrow with the start of your treatment. It's nice a bunch of you first stagers are going through treatment at the same time . Support at the beggining is so important.
    I read where you were afraid to not do the treatment. I was the opposite. I knew my odds were around 50% with out it. Yours will be better.

    I was so grateful for Claudias support when I made my choice.

    Fannie the difference between medicinal tea and herbal tea is, one is taken as a remedy for a condition. Many take herbal teas for enjoyment or as a non caffine hot drink.

    I use herbs that target inflamation, angiogenisis, liver cleansing, and antioxidant.

    And green tea is one of the ingredients.

    Take care,

    Grace
  • fanniemay
    fanniemay Member Posts: 53
    Gracegoi said:

    Fanniemay
    Good luck tommorrow with the start of your treatment. It's nice a bunch of you first stagers are going through treatment at the same time . Support at the beggining is so important.
    I read where you were afraid to not do the treatment. I was the opposite. I knew my odds were around 50% with out it. Yours will be better.

    I was so grateful for Claudias support when I made my choice.

    Fannie the difference between medicinal tea and herbal tea is, one is taken as a remedy for a condition. Many take herbal teas for enjoyment or as a non caffine hot drink.

    I use herbs that target inflamation, angiogenisis, liver cleansing, and antioxidant.

    And green tea is one of the ingredients.

    Take care,

    Grace

    Thanks everyone for your
    Thanks everyone for your positive thoughts and good wishes as I start my chemo tomorrow. I just got back from the grocery store and purchased all these products that are supposed to be good for cancer. Coffee, asparagus, broccoli,blueberrys, grean tea,mushrooms, spinach....any other suggestions? my son-in-law gave me a bottle of Mon A Vie..acai berry fruit drink from south america. Supposed to be great to help strengthen the immune system. Do you get your tea at a health food store Grace? If anyone wants to email me, here is my email...edithweil@loveavon.net I don't check this board everyday, but I do my email. Hugs to all, Edith
  • fanniemay
    fanniemay Member Posts: 53
    fanniemay said:

    Thanks everyone for your
    Thanks everyone for your positive thoughts and good wishes as I start my chemo tomorrow. I just got back from the grocery store and purchased all these products that are supposed to be good for cancer. Coffee, asparagus, broccoli,blueberrys, grean tea,mushrooms, spinach....any other suggestions? my son-in-law gave me a bottle of Mon A Vie..acai berry fruit drink from south america. Supposed to be great to help strengthen the immune system. Do you get your tea at a health food store Grace? If anyone wants to email me, here is my email...edithweil@loveavon.net I don't check this board everyday, but I do my email. Hugs to all, Edith

    first taxol/carbo treatment today
    Hi,Was at the hospital for my chemo treatment from 8a.m. til 4:30p.m. I started having heart palpatations and a fast pulse so they stopped and gave me steroids which helped. If I blow up like a "blow fish" I won't be going very many places. Have some nausea...took a pill...seems to have helped. Wasn't bad at all today. Tomorrow I will have more energy than the energizer bunny. Thursday I won't feel too good. If I have any bad side effects I am supposed to call them. BLessings and Hugs, Edith
  • imackie48
    imackie48 Member Posts: 96
    fanniemay said:

    first taxol/carbo treatment today
    Hi,Was at the hospital for my chemo treatment from 8a.m. til 4:30p.m. I started having heart palpatations and a fast pulse so they stopped and gave me steroids which helped. If I blow up like a "blow fish" I won't be going very many places. Have some nausea...took a pill...seems to have helped. Wasn't bad at all today. Tomorrow I will have more energy than the energizer bunny. Thursday I won't feel too good. If I have any bad side effects I am supposed to call them. BLessings and Hugs, Edith

    Hi Edith
    I am so happy that your 1st tx was not that bad. My doc gave me steroids to take 12 hr and 6hrs before my 1st tx. Did they mention putting a port in?
    I am going today for my pre tx teaching with the nurse. If you feel like emailing me just take talk since you and I are going thru this at the same time, maybe we can be supportive to each other. Jmack47@aol.com my address
    Take care of yourself, drink plenty of fluids..... Irene
  • california_artist
    california_artist Member Posts: 816 Member
    Ohmmmmmmmmmmmmmmmmm
    Ohmmmmmmmmmmmmmmmmmmmmm
  • I Will Survive
    I Will Survive Member Posts: 27

    Ohmmmmmmmmmmmmmmmmm
    Ohmmmmmmmmmmmmmmmmmmmmm

    Claudia——
    is your post

    Claudia——

    is your post (above) your response to my question about whether or not you had a hysterectomy or to Rosie's question about your stage at diagnosis?

    Hannah
  • jazzy1
    jazzy1 Member Posts: 1,379

    Claudia——
    is your post

    Claudia——

    is your post (above) your response to my question about whether or not you had a hysterectomy or to Rosie's question about your stage at diagnosis?

    Hannah

    Claudia
    You mentioned above --

    "Only changed my diet and lifestyle. All medical interference refused. So far, seems to be going well."

    Isn't the hysterectomy you had considered MEDICAL INTERFERENCE?? I'm confused here.

    Jan
  • Gracegoi
    Gracegoi Member Posts: 59
    jazzy1 said:

    Claudia
    You mentioned above --

    "Only changed my diet and lifestyle. All medical interference refused. So far, seems to be going well."

    Isn't the hysterectomy you had considered MEDICAL INTERFERENCE?? I'm confused here.

    Jan

    she also
    mentioned this

    "Cannot expect to not change any behaviors after having surgery to remove your cancerous tumor and not have your cancer return"


    its very easy to read posts fast and miss things I find.

    One cannot be staged with out debulking. Claudia has mentioned numerous times she is stage one A more in the past than recent.


    be at peace,
    wishing all well ,

    Take care,


    Grace
  • I Will Survive
    I Will Survive Member Posts: 27
    Gracegoi said:

    she also
    mentioned this

    "Cannot expect to not change any behaviors after having surgery to remove your cancerous tumor and not have your cancer return"


    its very easy to read posts fast and miss things I find.

    One cannot be staged with out debulking. Claudia has mentioned numerous times she is stage one A more in the past than recent.


    be at peace,
    wishing all well ,

    Take care,


    Grace

    Lecture
    "Cannot expect to not change any behaviors after having surgery to remove your cancerous tumor and not have your cancer return".

    Grace, I think this was more of a lecture to others than it was a revelation of what she had had done. Note the use of the word "your" rather then "my".

    Yes, it is easy to miss things.

    Refusing chemo and other treatment would be a lot easier to do if one is stage 1A than 3C. In my humble opinion, of course. Chiding later-stage patients for using these treatments is insensitive at best.
  • Gracegoi
    Gracegoi Member Posts: 59

    Lecture
    "Cannot expect to not change any behaviors after having surgery to remove your cancerous tumor and not have your cancer return".

    Grace, I think this was more of a lecture to others than it was a revelation of what she had had done. Note the use of the word "your" rather then "my".

    Yes, it is easy to miss things.

    Refusing chemo and other treatment would be a lot easier to do if one is stage 1A than 3C. In my humble opinion, of course. Chiding later-stage patients for using these treatments is insensitive at best.

    I understand your concern Hannah
    But this sort of thing is best addresed through private email rather than working it out on the boards.

    I can't speak for Claudia But for me it was very hard to put myself in the line up here and share having refused Chemo and radiation. I didn't share in the thread calling all who are stage 1 a while back.

    I do have respect for those going through chemo and if you have read all of Claudias posts going way back you will see she is supportive both ways.

    Grace
  • I Will Survive
    I Will Survive Member Posts: 27
    Gracegoi said:

    I understand your concern Hannah
    But this sort of thing is best addresed through private email rather than working it out on the boards.

    I can't speak for Claudia But for me it was very hard to put myself in the line up here and share having refused Chemo and radiation. I didn't share in the thread calling all who are stage 1 a while back.

    I do have respect for those going through chemo and if you have read all of Claudias posts going way back you will see she is supportive both ways.

    Grace

    What concern?
    What concern of mine do you understand? A concern that people not be PUBLICLY chided here? If so, I am glad that you agree.

    So as far as taking it "private".......what's good for the goose is good for the gander, heh? Public chiding begets more of the same.

    One does not have to read too far back to see what I am talking about! Remember Linda and what was said to her? Just horrendous.

    Hannah
  • HellieC
    HellieC Member Posts: 524 Member

    What concern?
    What concern of mine do you understand? A concern that people not be PUBLICLY chided here? If so, I am glad that you agree.

    So as far as taking it "private".......what's good for the goose is good for the gander, heh? Public chiding begets more of the same.

    One does not have to read too far back to see what I am talking about! Remember Linda and what was said to her? Just horrendous.

    Hannah

    Ladies, please!
    Oh ladies, please don't go down this route! We are all treading a very difficult path and we need to stand by one another, even when we have different views. I know it's difficult sometimes, but let's try not to lose the light on this board - we all need it!
    Kindest wishes
    Helen
  • california_artist
    california_artist Member Posts: 816 Member
    Gracegoi said:

    she also
    mentioned this

    "Cannot expect to not change any behaviors after having surgery to remove your cancerous tumor and not have your cancer return"


    its very easy to read posts fast and miss things I find.

    One cannot be staged with out debulking. Claudia has mentioned numerous times she is stage one A more in the past than recent.


    be at peace,
    wishing all well ,

    Take care,


    Grace

    Hi, Grace-hope you will have a great time with the puppy.
    Thanks for thinking of me, but, I am not a Stage lA as I didn't have any lymph nodes removed. My endometrial biopsy only showed the usual uterine cancer type, not UPSC. I had a 3 cm x 1cm tumor and two enlarged lymph nodes that continued to grow to over 1.5cm, until I began to use unconventional methods, after doing research and feeling that Taxol, while having an effect on the usual uterine cancer, which were er+, was not very effective on an estrogen negative cancer, like UPSC. since beginning the alternative therapy, while the nodes have never shrunk, neither have they grown. What I am doing is working for me. That's all I can wish for.

    since the topic of the post is a question about recurrence, I didn't think it necessary to say I had a hysterectomy etc, since one cannot recur unless they have first gone into remission. I suppose I could clarify my response to say that after the original surgery, which I had because I didn't have any information about whether or not it was the best thing to do, anyway, after that, I have had not further treatments from conventional medicine.

    I'm just saying what is true for me. There really isn't any reason to have any sort of discussion about it. It just is. Go and play with someone you love and think happy thoughts.



    I believe that having my lymph nodes left intact was of great benefit in my being able to stop the cancer from either growing or returning, as was my radical change in diet and exercise.



    We all do what we think is best for us, and that's all we can do.

    The weather here is unseasonably warm for this time of year. My grand-daughter is a true delight. My daughter's health is much improved. My grandson is loving his first time in school since second grade. I have ordered oodles of canvases and a wonderful new camera. My thoughts for new paintings are endless. I do hope you all have as wonderful a year as I plan on having, with love in my heart for all.
  • daisy366
    daisy366 Member Posts: 1,458 Member

    Hi, Grace-hope you will have a great time with the puppy.
    Thanks for thinking of me, but, I am not a Stage lA as I didn't have any lymph nodes removed. My endometrial biopsy only showed the usual uterine cancer type, not UPSC. I had a 3 cm x 1cm tumor and two enlarged lymph nodes that continued to grow to over 1.5cm, until I began to use unconventional methods, after doing research and feeling that Taxol, while having an effect on the usual uterine cancer, which were er+, was not very effective on an estrogen negative cancer, like UPSC. since beginning the alternative therapy, while the nodes have never shrunk, neither have they grown. What I am doing is working for me. That's all I can wish for.

    since the topic of the post is a question about recurrence, I didn't think it necessary to say I had a hysterectomy etc, since one cannot recur unless they have first gone into remission. I suppose I could clarify my response to say that after the original surgery, which I had because I didn't have any information about whether or not it was the best thing to do, anyway, after that, I have had not further treatments from conventional medicine.

    I'm just saying what is true for me. There really isn't any reason to have any sort of discussion about it. It just is. Go and play with someone you love and think happy thoughts.



    I believe that having my lymph nodes left intact was of great benefit in my being able to stop the cancer from either growing or returning, as was my radical change in diet and exercise.



    We all do what we think is best for us, and that's all we can do.

    The weather here is unseasonably warm for this time of year. My grand-daughter is a true delight. My daughter's health is much improved. My grandson is loving his first time in school since second grade. I have ordered oodles of canvases and a wonderful new camera. My thoughts for new paintings are endless. I do hope you all have as wonderful a year as I plan on having, with love in my heart for all.

    Confused
    Are you saying you were not diagnosed with UPSC? What exactly was your diagnosis, stage, and medical procedures (just biopsy, no TAH)?