5 Year Survival with Stage IVb

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pinky104
pinky104 Member Posts: 574 Member
in Uterine/Endometrial Cancer #1

Today is my fifth anniversary of survival after surgery for stage IVb UPSC.  As far as I know, I'm still NED.  I had a mass last year that hadn't grown after I had multiple CT scans and a PET scan to check on it, so my GYN/onc thought it was not a reocurrence.  I have my final CT scan scheduled for May 18 of this year.  I will also have labs, including a CA-125, this week.  I won't know my results until I can see my GYN/onc on June 8.  He told me in December that he thought I was still NED because cancer always grows, and this mass hadn't.  These tests will be his final reassurance that it definitely hasn't grown, and he'll stop analyzing me so closely for it after the tests are found to be okay. The mass could be a fluid collection from having had lymph nodes removed.  

I understand from something I read recently that stage IV only has a 9% chance of survival, so I'm very happy to be part of that 9%.  I thought anyone fighting this in stage IV  who is newly diagnosed would like to know that NED survival is possible with the highest possible stage of this cancer.

I do get right-sided abdominal pain.  I've been told that I have an abnormally large separation in my rectus muscles, causing a false sensation of a hernia.  I did have an incisional hernia after my cancer surgery, where I also had my gallbladder and appendix removed at the same time.  I had the hernia fixed in 2012.  This feels like the same pain, a little higher up in my gut.  My mass is in my paracolic gutter, so it's in my back, near my spine, so it probably has nothing to do with my pain.

I'm now recovering from bunion surgery I had in February.  It's a very slow process.  

For those of you who are still fighting this disease, especially those in stage IV, I wish you all can be as lucky as I have been. 

Comments

  • Kathy G.
    Kathy G. Member Posts: 244 Member
    #2
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    Hi Pinky!
    I always follow

    Hi Pinky!

    I always follow your posts with interest. You have such extensive knowledge and break it down into understandable terms for everyone on the board.

    You are one of my 'heroes' like Jan & Maryann who went thru so much, but came to the boards and nevr complained. True warriors! Ro consistently comes on to keep everyone hopeful given her ongoing fight as well as others like her whose names escape me at the minute Frown

    I am so happy for you. I cannot begin to fathom how one goes through such an ongoing assault on the body and your spirit is unaffected. Still you march on.

    My wish for you would be that your body would give you a break so you can relax and be free of worry. But in the meantime, celebrate like a crazy person and savor the day!

     

    Happy thoughts!

    Kathy

  • artist49
    artist49 Member Posts: 87
    #3
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    survival

    CONGRATULATIONS!!   Giving everyone hope is really the  best

    way to celebrate!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,371 Member
    #4
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    Pinky, this is so encouraging

    Pinky, this is so encouraging for all of us to hear.  Keep kickin' it girl!

  • I_believe
    I_believe Member Posts: 8
    #5
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    gives us hope

    Pinky, i love reading all thos 5 year stories.

     

    did you do chemo? What kind, have you heard anything about clinical trials? 

    Sorry, but i dont know what NED is...

     

    praying for everyone, keep strong ladies! And happy mother's day

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,371 Member
    #6
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    I_believe said:

    gives us hope

    Pinky, i love reading all thos 5 year stories.

     

    did you do chemo? What kind, have you heard anything about clinical trials? 

    Sorry, but i dont know what NED is...

     

    praying for everyone, keep strong ladies! And happy mother's day

    I_believe, we all learn a new

    I_believe, we all learn a new language when we are diagnosed with this disease.  NED is No Evidence of Disease.  As you can imagine, it is the words we all hope to hear.

     

  • AWK
    AWK Member Posts: 364 Member
    #7
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    Kathy G. said:

    Hi Pinky!
    I always follow

    Hi Pinky!

    I always follow your posts with interest. You have such extensive knowledge and break it down into understandable terms for everyone on the board.

    You are one of my 'heroes' like Jan & Maryann who went thru so much, but came to the boards and nevr complained. True warriors! Ro consistently comes on to keep everyone hopeful given her ongoing fight as well as others like her whose names escape me at the minute Frown

    I am so happy for you. I cannot begin to fathom how one goes through such an ongoing assault on the body and your spirit is unaffected. Still you march on.

    My wish for you would be that your body would give you a break so you can relax and be free of worry. But in the meantime, celebrate like a crazy person and savor the day!

     

    Happy thoughts!

    Kathy

    I am so happy for you!

    And you inspire me, give me hope and the ability to think long term.  Tell us how you celebrated!  Cheers and congrats on SS and T or as my friends say- Staying Strong and Thriving.  Hugs - Anne

  • pinky104
    pinky104 Member Posts: 574 Member
    #8
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    I_believe said:

    gives us hope

    Pinky, i love reading all thos 5 year stories.

     

    did you do chemo? What kind, have you heard anything about clinical trials? 

    Sorry, but i dont know what NED is...

     

    praying for everyone, keep strong ladies! And happy mother's day

    I_believe

    I did 6 rounds of carboplatin and taxol, that's all, no radiation.  My GYN/onc thought I would be a good person to participate in a clinical trial since I had worked in an ER as a coder, but when he tried to find one for me, there were none currently being done for stage IV patients.  I don't really know anything about clinical trials on patients in other stages.  I'm sure there must be trials for them somewhere.

    I refused the Neulasta shot, but took a blood transfusion halfway through chemo.  I guess I'm really lucky that I'm one of the people whose cancer responded to this regimen of chemo.  I retired rather than going back to work, as I knew the stress at my job wouldn't be good for me.  I'm sure that helped me recover more quickly.   

  • pinky104
    pinky104 Member Posts: 574 Member
    #9
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    AWK said:

    I am so happy for you!

    And you inspire me, give me hope and the ability to think long term.  Tell us how you celebrated!  Cheers and congrats on SS and T or as my friends say- Staying Strong and Thriving.  Hugs - Anne

    Anne

    I can't say I really celebrated today, except for announcing my success to a couple of people.  I spent the day having my monthly chiropractor visit and lugging my summer clothes up from the cellar and taking my winter clothes down there. It's finally gotten warm enough here in upstate NY to do that.  I did treat myself to some chocolate candy and cookies I got on Mother's Day.

    Thanks for saying I'm an inspiration. It's nice to hear that.  I wish you success in your very long battle. You've been through so much! 

  • Cucu me
    Cucu me Member Posts: 213 Member
    #10
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    pinky104 said:

    I_believe

    I did 6 rounds of carboplatin and taxol, that's all, no radiation.  My GYN/onc thought I would be a good person to participate in a clinical trial since I had worked in an ER as a coder, but when he tried to find one for me, there were none currently being done for stage IV patients.  I don't really know anything about clinical trials on patients in other stages.  I'm sure there must be trials for them somewhere.

    I refused the Neulasta shot, but took a blood transfusion halfway through chemo.  I guess I'm really lucky that I'm one of the people whose cancer responded to this regimen of chemo.  I retired rather than going back to work, as I knew the stress at my job wouldn't be good for me.  I'm sure that helped me recover more quickly.   

    everything you say is

    everything you say is inspiring,

    I had surgery on May 11 and my diagnosis now is Endometrial adenocarcinoma, stage 4,grade 1(in NY)  or 3(before in Chicago,when I had my biopsy).

    I had bowel obstruction after the surgery, so I stayed in the hospital first 4 days and then 6 more. Now I'm getting better.  Follow some healthy eating.

    Soon I have to meet with doctors about starting chemo....., and I'm so afraid, but thank you all for the good words and hope.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,371 Member
    #11
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    Cucu me said:

    everything you say is

    everything you say is inspiring,

    I had surgery on May 11 and my diagnosis now is Endometrial adenocarcinoma, stage 4,grade 1(in NY)  or 3(before in Chicago,when I had my biopsy).

    I had bowel obstruction after the surgery, so I stayed in the hospital first 4 days and then 6 more. Now I'm getting better.  Follow some healthy eating.

    Soon I have to meet with doctors about starting chemo....., and I'm so afraid, but thank you all for the good words and hope.

    cuculigata, I suspect it is

    cuculigata, I suspect it is scary because you have never had chemo before.  I would suggest to take a breath.  Chemo has its challenges, but you can deal with all of them.  Everyone is different but some of the side effects keep popping up among the women here.  When I met with the chemo nurse I remember being told "you don't have to write anything down" but my BFF and I walked out of there realizing it WASN'T all written down and tried to remember what we were told. 

    Take notes.  Ask questions.  You will do fine, just come and ask questions here if you want.  Chemo is constipating, but as I heard one patient say, "Miralax is a miracle".  I should have bought stock in Miralax!  Look for coupons now.  :) 

    You are going to surprise yourself on just how good you do!

  • Cucu me
    Cucu me Member Posts: 213 Member
    #12
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    NoTimeForCancer said:

    cuculigata, I suspect it is

    cuculigata, I suspect it is scary because you have never had chemo before.  I would suggest to take a breath.  Chemo has its challenges, but you can deal with all of them.  Everyone is different but some of the side effects keep popping up among the women here.  When I met with the chemo nurse I remember being told "you don't have to write anything down" but my BFF and I walked out of there realizing it WASN'T all written down and tried to remember what we were told. 

    Take notes.  Ask questions.  You will do fine, just come and ask questions here if you want.  Chemo is constipating, but as I heard one patient say, "Miralax is a miracle".  I should have bought stock in Miralax!  Look for coupons now.  :) 

    You are going to surprise yourself on just how good you do!

    thanks for sharing
    I'll have

    thanks for sharing

    I'll have in mind everything you said

  • pinky104
    pinky104 Member Posts: 574 Member
    #13
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    Cucu me said:

    everything you say is

    everything you say is inspiring,

    I had surgery on May 11 and my diagnosis now is Endometrial adenocarcinoma, stage 4,grade 1(in NY)  or 3(before in Chicago,when I had my biopsy).

    I had bowel obstruction after the surgery, so I stayed in the hospital first 4 days and then 6 more. Now I'm getting better.  Follow some healthy eating.

    Soon I have to meet with doctors about starting chemo....., and I'm so afraid, but thank you all for the good words and hope.

    cuculigata

    Everyone reacts differently to chemo.  For me, it wasn't bad at all.  The worst part was losing my hair, and the second worst part was getting shortness of breath when my blood count went down.  I had a blood transfusion to help me with that, but I was later found to have too much iron in my body due to a genetic condition (hemochromatosis) that was the biggest part of the problem.  I was never nauseous and never vomited because I was prescribed Emend pills before I started each round of my chemo.  

    I was in the hospital for 6 days.  I had both my cancer surgery and removal of my gallbladder (due to gallstones) and appendix during the same surgery.  I couldn't get my bowel function back for days, which may have had something to do with the inedible hospital food.

    Are you in the NYC area?  I live upstate and had my surgery upstate.  How far had your cancer spread?  Mine just spread to adjacent organs and never got into the lymph nodes, yet it was still considered the highest stage (IVb) of uterine cancer.  Mine was UPSC which is grade 3.

    I hope your chemo goes well. 

  • Diya
    Diya Member Posts: 93
    #14
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    pinky104 said:

    cuculigata

    Everyone reacts differently to chemo.  For me, it wasn't bad at all.  The worst part was losing my hair, and the second worst part was getting shortness of breath when my blood count went down.  I had a blood transfusion to help me with that, but I was later found to have too much iron in my body due to a genetic condition (hemochromatosis) that was the biggest part of the problem.  I was never nauseous and never vomited because I was prescribed Emend pills before I started each round of my chemo.  

    I was in the hospital for 6 days.  I had both my cancer surgery and removal of my gallbladder (due to gallstones) and appendix during the same surgery.  I couldn't get my bowel function back for days, which may have had something to do with the inedible hospital food.

    Are you in the NYC area?  I live upstate and had my surgery upstate.  How far had your cancer spread?  Mine just spread to adjacent organs and never got into the lymph nodes, yet it was still considered the highest stage (IVb) of uterine cancer.  Mine was UPSC which is grade 3.

    I hope your chemo goes well. 

    Pinky

    congratulations to you! I am extremely happy for you! I hope you remain NED forever. And this news fills all of us with optimism as well. Thank you so much for sharing. Prayers for you and all others fighting with cancer.

     

    diya

  • Cucu me
    Cucu me Member Posts: 213 Member
    #15
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    pinky104 said:

    cuculigata

    Everyone reacts differently to chemo.  For me, it wasn't bad at all.  The worst part was losing my hair, and the second worst part was getting shortness of breath when my blood count went down.  I had a blood transfusion to help me with that, but I was later found to have too much iron in my body due to a genetic condition (hemochromatosis) that was the biggest part of the problem.  I was never nauseous and never vomited because I was prescribed Emend pills before I started each round of my chemo.  

    I was in the hospital for 6 days.  I had both my cancer surgery and removal of my gallbladder (due to gallstones) and appendix during the same surgery.  I couldn't get my bowel function back for days, which may have had something to do with the inedible hospital food.

    Are you in the NYC area?  I live upstate and had my surgery upstate.  How far had your cancer spread?  Mine just spread to adjacent organs and never got into the lymph nodes, yet it was still considered the highest stage (IVb) of uterine cancer.  Mine was UPSC which is grade 3.

    I hope your chemo goes well. 

    pinky

    my surgery went from robotic to full cut, because the surgeon saw suspicious spots next to my my bladder and rectum, plus plenty of lymph nodes -all cancerous.

    He removed all that in adition to the hysterectomy. Plus I have fluids in the abdomen, that also are causing problems.

     

    yes, I'm in NY

  • pinky104
    pinky104 Member Posts: 574 Member
    #16
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    cuculigata

    The day I went into the hospital, I was also scheduled for robotic surgery.  When I got there, my gyn/onc came in and announced that I would not be having robotic surgery that day as he had just looked at my CT scan (I'd had that in a different hospital where I worked) and he found my cancer was too extensive for robotic surgery.  My heart was doing flip/flops that day from nerves, and a cardiac specialist was called in to check me before I had the surgery.  My sister, an LPN, came with me and pressed my doctor to do a gallbladder removal during the surgery because she'd seen the CT scan report and had seen I had gallstones.  My gyn/onc called in a gastroenterologist who had an office down the hall from him to do that surgery in the middle of my other one.  So needless to say, my surgery was a far cry from what I'd expected.  I had seen my CT report days before my surgery and had called my gyn/onc's office to tell them my cancer was more extensive than they had thought prior to the day of surgery, but I'd only been able to leave a message with the office staff.  They probably never passed it on.  

    I had told my boss at another hospital that I'd be back to work in 2 weeks.  I never went back.  I hit 62 just after I finished chemo, so I decided to start collecting social security.  I'm sure the hospital's job stress would have been detrimental to my recovery.

    I just wondered if you were in NYC where there are more options for treatment or somewhere else in the state.  I know my gyn/onc gets patients from across the state as there are limited options for treatment upstate.  I'm just glad I got a good one.  His partner was the doctor recommended by my GYN, but that guy was booked up, so I settled for this guy, and I'm glad I did.  He's been great to me.

     

     

  • Cucu me
    Cucu me Member Posts: 213 Member
    #17
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    pinky104 said:

    cuculigata

    The day I went into the hospital, I was also scheduled for robotic surgery.  When I got there, my gyn/onc came in and announced that I would not be having robotic surgery that day as he had just looked at my CT scan (I'd had that in a different hospital where I worked) and he found my cancer was too extensive for robotic surgery.  My heart was doing flip/flops that day from nerves, and a cardiac specialist was called in to check me before I had the surgery.  My sister, an LPN, came with me and pressed my doctor to do a gallbladder removal during the surgery because she'd seen the CT scan report and had seen I had gallstones.  My gyn/onc called in a gastroenterologist who had an office down the hall from him to do that surgery in the middle of my other one.  So needless to say, my surgery was a far cry from what I'd expected.  I had seen my CT report days before my surgery and had called my gyn/onc's office to tell them my cancer was more extensive than they had thought prior to the day of surgery, but I'd only been able to leave a message with the office staff.  They probably never passed it on.  

    I had told my boss at another hospital that I'd be back to work in 2 weeks.  I never went back.  I hit 62 just after I finished chemo, so I decided to start collecting social security.  I'm sure the hospital's job stress would have been detrimental to my recovery.

    I just wondered if you were in NYC where there are more options for treatment or somewhere else in the state.  I know my gyn/onc gets patients from across the state as there are limited options for treatment upstate.  I'm just glad I got a good one.  His partner was the doctor recommended by my GYN, but that guy was booked up, so I settled for this guy, and I'm glad I did.  He's been great to me.

     

     

    such a journey

    You had.

    I'm glad you are well now.

    I'm in the begging of my journey. I'm going to have chemo, I eat organic,planning to go only on fruit and veggies and juicing, as I did before the surgery.

    I'm craving different food, all I ate before is kind of disgusting for me now.

    I want to exercise too, but I'm still weak.

    And we'll see

     

  • pinky104
    pinky104 Member Posts: 574 Member
    #18
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    Cucu me said:

    such a journey

    You had.

    I'm glad you are well now.

    I'm in the begging of my journey. I'm going to have chemo, I eat organic,planning to go only on fruit and veggies and juicing, as I did before the surgery.

    I'm craving different food, all I ate before is kind of disgusting for me now.

    I want to exercise too, but I'm still weak.

    And we'll see

     

    cuculigata

    Organic fruit and veggies are great.  Be sure to also get your protein, as your body needs that, too.  Also, fats are needed to keep your brain healthy, I've read.  If you're going to limit yourself to just one group of foods, you might be wise to see a nutritionist and make sure you're giving your body everything it needs.  My step-daughter is a vegetarian.  Her doctor told her when she got pregnant that she had to eat beans as a part of her vegetarian diet or the baby would take the nutrients it needed from her bones.  Nutritional requirements can be quite complex.  The body needs the basic food groups to keep everything working properly, according to what I've read.

  • Daughters3
    Daughters3 Member Posts: 18
    #19
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    You give us hope!

    Thanks so much for sharing your story & great news! i wish you many, many, many more years of good health! 

  • Maggie_mac
    Maggie_mac Member Posts: 32
    #20
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    Dear Pinky,
    I'm so happy for

    Dear Pinky,

    I'm so happy for you.  I hope your June tests continue to confirm your NED status.  I'm not there yet and this Friday I will have chemo #29.  I'm working hard to keep this from taking over my life, but as we all know, that can be difficult some times.

    Let's all celebrate Pinky!!

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