Uterine Stage IV B Reoccurence Vagina

24

Comments

  • evolo58
    evolo58 Member Posts: 293 Member
    edited December 2017 #22
    Sounds about as good news as

    Sounds about as good news as you can hope for, and hopefully, you can rest a little over the holiday season. You have been through so much ... a little fun and salsa for a little while sounds like a great idea! 

    I'm finding that bit out about questioning as well. Wait ... WHY do I "have" to accept dire outcomes? I understand it's not puppies and unicorns and rainbows, and that Stage 4B UPSC (diagonsed) is brutal ... but WHY should I just cower in a corner? Why can't I expect my medical staff to be as committed as I am to living a longer life? I see many ladies here with such doctors and medical personnel. I fear it will make a big difference in future treatments for me. I want doctors to fight WITH me on this. This is why I am really considering that second doctor for my surgery and follow-up. (I see you've been having problems with certain doctors yourself.)

    I hope you now have doctors are also dedicated to having you live with this as long as they can provide for you ... and longer. Much longer.

  • ckdgedmom
    ckdgedmom Member Posts: 166 Member
    #23
    evolo58 said:

    Sounds about as good news as

    Sounds about as good news as you can hope for, and hopefully, you can rest a little over the holiday season. You have been through so much ... a little fun and salsa for a little while sounds like a great idea! 

    I'm finding that bit out about questioning as well. Wait ... WHY do I "have" to accept dire outcomes? I understand it's not puppies and unicorns and rainbows, and that Stage 4B UPSC (diagonsed) is brutal ... but WHY should I just cower in a corner? Why can't I expect my medical staff to be as committed as I am to living a longer life? I see many ladies here with such doctors and medical personnel. I fear it will make a big difference in future treatments for me. I want doctors to fight WITH me on this. This is why I am really considering that second doctor for my surgery and follow-up. (I see you've been having problems with certain doctors yourself.)

    I hope you now have doctors are also dedicated to having you live with this as long as they can provide for you ... and longer. Much longer.

    You are right

    You are right...you need a doctor who is committed to your wellness...and making you feel like he/she is fighting along with you...a fellow warrior...

    I'm blessed to have 2 such doctors...my gyno oncologist never once spoke about life expectancy or any of the bad stuff and she told me not to google...and I know she and my pharmacologist did all they could before handing me over to my amazing radiology oncologist. He is named Angel...so I have an Angel. He was so worried I was going to back out of radiation that he called my gyno oncologist and told her "I don't care who she goes to but please make her do it because it is the only way we can give her a future". He's totally invested in helping me---so much so he stays late for scan results and studies them closely (that's how he found my cancer in my neck lymph glands even though the radiologist who read the scans missed it). He once spent a weekend double checking my scans. I have a team. They fight for me.

    You deserve the same evolo58...you deserve to have a doctor that makes you feel like you are a priortiy and that he/she can give you a future...if you don't feel that way now find someone who does if you can...I wish I could send my Angel to you...

  • linmk
    linmk Member Posts: 58
    #24
    Pulmonary Embolism Blood Clot PE on CT Scan

    Last week I went for a CT scan. A large pulmonary embolism was found near my heart, and when I was taken to the emergency room another clot was found in my upper right leg by ultrasound. I was hospitalized for two days and put on blood thinner. The doctors started me on drip heparin and then on the second day Lovenox injections twice a day which I will have to take forever. Also, on my second night I ran a fever, and the doctors decided to keep me hospitalized for an extra day. They found that I had a UTI and started me on antibiotics, levofloxacin. So my trip to get a CT scan turned out differently than what I thought it would.

     

    My cancer is worsening. I knew that a month ago and I informed the doctor, but she insisted that I go through another month of gemzar/cisplatin chemo. I have not had blood clots before. I did feel weak before I went for the CT scan, but I thought it was anemia. I also had a dry non-productive cough which I attributed to allergies. I think the worsening cancer, the gemzar/cisplatin chemo which weakened my immune system and did nothing to halt my cancer and the UTI all contributed to my pulmonary embolism (PE). I am still waiting to talk to the doctor about future treatments. I am definitely going to put my foot down and refuse to complete a treatment if I know it is not working and/or if the side effects are too severe. I feel pretty good today as I type this, but I don't want to live with constant fatigue. Fortunately, I have no pain and I want to keep it that way. The doctors call my PE, an asymptomatic pulmonary embolism. My embolism is a collection of clots not just one clot. I think it's been developing since at least the last month. It will probably take a very long time to dissolve.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    edited February 2018 #25
    linmk, I am so sorry to hear

    linmk, I am so sorry to hear what has happened.  Please take care of yourself while the clots dissolve.  

  • linmk
    linmk Member Posts: 58
    #26
    NoTimeForCancer said:

    linmk, I am so sorry to hear

    linmk, I am so sorry to hear what has happened.  Please take care of yourself while the clots dissolve.  

    Thank you

    I appreciate your sympathy NoTimeForCancer.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited February 2018 #27
    linmk, Wow! What a time you

    linmk, Wow! What a time you have had. I'm so sorry to hear this. Glad you are feeling better and really glad to hear your spunk! You continue to fight for yourself. No one knows your body like you do. I hope you heal quickly and can find a solution that gets all of this under control. Please come back and let us know how you are doing.

    Love and Hugs,

    Cindi

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #28
    Wow!

    So sorry you are going through all this. Do you think maybe eventually they will let you go on something like Eliquis instead of the shots. I hated those. Stay strong!  

  • Armywife
    Armywife Member Posts: 451 Member
    #29
    Wow

    Thank you so much for the update.  I'll pray that your doctor works with you to find the best way forward.  I'm impressed with your matter-of-fact attitude and the way you advocate for yourself.  I've learned a lot from you!

  • derMaus
    derMaus Member Posts: 558 Member
    #30
    linmk said:

    Pulmonary Embolism Blood Clot PE on CT Scan

    Last week I went for a CT scan. A large pulmonary embolism was found near my heart, and when I was taken to the emergency room another clot was found in my upper right leg by ultrasound. I was hospitalized for two days and put on blood thinner. The doctors started me on drip heparin and then on the second day Lovenox injections twice a day which I will have to take forever. Also, on my second night I ran a fever, and the doctors decided to keep me hospitalized for an extra day. They found that I had a UTI and started me on antibiotics, levofloxacin. So my trip to get a CT scan turned out differently than what I thought it would.

     

    My cancer is worsening. I knew that a month ago and I informed the doctor, but she insisted that I go through another month of gemzar/cisplatin chemo. I have not had blood clots before. I did feel weak before I went for the CT scan, but I thought it was anemia. I also had a dry non-productive cough which I attributed to allergies. I think the worsening cancer, the gemzar/cisplatin chemo which weakened my immune system and did nothing to halt my cancer and the UTI all contributed to my pulmonary embolism (PE). I am still waiting to talk to the doctor about future treatments. I am definitely going to put my foot down and refuse to complete a treatment if I know it is not working and/or if the side effects are too severe. I feel pretty good today as I type this, but I don't want to live with constant fatigue. Fortunately, I have no pain and I want to keep it that way. The doctors call my PE, an asymptomatic pulmonary embolism. My embolism is a collection of clots not just one clot. I think it's been developing since at least the last month. It will probably take a very long time to dissolve.

    Oh, crap

    Oh, crap. You are a trooper and dealing with so much; I thank god it's not active pain, though. Lack thereof is definitely a good sign. I'd put my foot down, too, if I were you: it's a vicious cycle where the drugs they give you in an attempt to cure your disease wind up weakening your system such that the disease can progress. It's totally illogical. Refresh my memory - did you have Foundation One testing? 

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #31
    Linmk

    I just read your posting. My thoughts are with you as you try to decide what is best for you. There are no easy answers. God how I wish no woman would ever be diagnosed with cancer again. ((Hug))

    Lori

  • derMaus
    derMaus Member Posts: 558 Member
    #32
    derMaus said:

    Oh, crap

    Oh, crap. You are a trooper and dealing with so much; I thank god it's not active pain, though. Lack thereof is definitely a good sign. I'd put my foot down, too, if I were you: it's a vicious cycle where the drugs they give you in an attempt to cure your disease wind up weakening your system such that the disease can progress. It's totally illogical. Refresh my memory - did you have Foundation One testing? 

    Never mind

    Never mind, I read back and you did have F1 testing. Sorry for my lack of focus. B

  • SF73
    SF73 Member Posts: 317 Member
    edited February 2018 #33
    I am so sorry that you are

    I am so sorry that you are going through tough times, Linmk. I was wondering.. Since you are Type 1 endometrial cancer. Have your doctors considered any hormonal treatment? Did they test the hormonal receptors of your tumor? Regardless of their responsiveness I think hormone therapy is a low risk treatment and cannot hurt to try. Wishing you the best!

  • evolo58
    evolo58 Member Posts: 293 Member
    edited February 2018 #34
    I hope you find SOME way to

    I hope you find SOME way to shake this beast off your tail.

  • Soup52
    Soup52 Member Posts: 908 Member
    #35
    I’m so sorry to read this. I

    I’m so sorry to read this. I had a PE many years ago and it’s no fun. It is something I worry about a lot though I’ve never had another one. Chemo alone thickens the blood. While I had the shots I was later put on pills instead for about 6 months with testing every month. Prayers that your extreme problems are solved.

  • linmk
    linmk Member Posts: 58
    #36
    derMaus said:

    Never mind

    Never mind, I read back and you did have F1 testing. Sorry for my lack of focus. B

    MD Anderson Genome Testing

    MD Anderson tested 134 genes with overlap.

  • linmk
    linmk Member Posts: 58
    #37
    TeddyandBears_Mom said:

    linmk, Wow! What a time you

    linmk, Wow! What a time you have had. I'm so sorry to hear this. Glad you are feeling better and really glad to hear your spunk! You continue to fight for yourself. No one knows your body like you do. I hope you heal quickly and can find a solution that gets all of this under control. Please come back and let us know how you are doing.

    Love and Hugs,

    Cindi

    Thank You

    Cindi, I appreciate your support.

  • linmk
    linmk Member Posts: 58
    #38
    CheeseQueen57 said:

    Wow!

    So sorry you are going through all this. Do you think maybe eventually they will let you go on something like Eliquis instead of the shots. I hated those. Stay strong!  

    Blood Thinner

    Thank you for your support CheeseQueen57. I don't know anything about Eliquis. I don't mind giving myself shots in the stomach. I feel no pain. My sister has been on Lovenox for sevreal years for Protein C deficiency. It's a genetic trait that I don't have myself. She has developed hematomas from it. I hope that the doctors are doing all they can to help my friend. Be sure to tell us about  your trip to Florida when you return.

  • linmk
    linmk Member Posts: 58
    #39
    Thanks for all your support everyone

    I appreciate your thoughts and also any advice you have. You're wondeful.

  • linmk
    linmk Member Posts: 58
    edited February 2018 #40
    Exophytic Vagina Tumors

    I've been asked how I knew that my cancer was getting worse. I knew because I have two exphytic ball shapped tumors growing out of my vagina. I could physically reach down and feel them growing outwards. Gemzar/cisplatin definitely were not shrinking them. I jokingly told the doctor that I would need a jock strap if the balls grew larger. Who knows maybe I'll grow a penis too. That would be a real transformation.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #41
    Glad to see, somehow, you

    Glad to see, somehow, you keep a sense of humor about it.  I can't even imagine what his reaction to what you said, but I can tell you my office must wonder just what the heck I am laughing about.  

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