Asking once again for your advice

2

Comments

  • Forherself
    Forherself Member Posts: 1,018 Member
    #22
    Sounds like a good plan.

    There are many great days ahead.  I am glad we can help.  It is hard to talk to family sometimes.  Hugs to you.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    #23
    DF, I am clearly late to the

    DF, I am clearly late to the game here.  I am at a loss at what to say.  I "hear" you both in your battle-fatigue and spirit - and they sound very different to me.  However, I have also appreciated that you are one who has known themselves and never been afraid to look in that mirror.  You are our cowgirl for sure and you will cowgirl-up to whatever it may be.  Hugs my dear.

  • Little Annie
    Little Annie Member Posts: 28 Member
    #24
    Doxil/Avastin

    Donna Faye,  like you, I have recurrent UPSC.   Like you, I had lymphedema in thigh, calf, and foot.  I am currently on Doxil/Avastin regiment and having a very good response (CA-125 way down).  Lymphedema has totally resolved.  Maybe worth talking to your doctor.    Wishing you the best of luck.

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #25
    Feeling better

    It was so painful to walk due to the knees that I was really feeling low, but I had cortisone shots in both knees on Wednesday and the OA problem is resolving and I am able to walk w/o cane. I have been doing lots of research and will be ready for discussion in Dec. w/oncologist. Have about decided to try the immunotherapy route. She understands my reluctance and said would start with low dose. Again, it helps to hear from any of you in the same boat. Thanks, Little Annie and everyone!

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #26
    DonnaFaye

    I too am very sorry to hear what you are going through...

    I am also late to responding as I am just reading all these responses now.

    What wonderful support you have been given! It is amazing how your request for help thinking through your options resulted in your becoming more comfortable in thinking through beyond the “now” of today. Duke is a great institution and you will make the right decision for you. Each of us have our own values as to what is most important to us. Personally, quality of life is most important to me no matter what. Keeping you in my prayers dear DonnaFaye! 

    ((Hug))

    Lori

  • dgrdalton
    dgrdalton Member Posts: 161 Member
    #27
    Thankful you are feeling

    Thankful you are feeling encouraged! What a load to have and great that your team has stepped up and taking good care of you.

    You were one of the first people I remember when I joined this board in 2017 diagnosed as UPSC Stage 1A, also. I'm almost done with treatment for a recurrence this year. My oncologist spoke with me last week about starting Lenvima/Keytruda next. I've been reading everything I can find on the combo. They say the side effects are not any worse with taking both drugs as they would be with taking one alone. She seems quite excited that the response rate for UPSC is 40%, but I'm not sure I understand what that really means. 

    Prayers!

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #28
    dgrdalton said:

    Thankful you are feeling

    Thankful you are feeling encouraged! What a load to have and great that your team has stepped up and taking good care of you.

    You were one of the first people I remember when I joined this board in 2017 diagnosed as UPSC Stage 1A, also. I'm almost done with treatment for a recurrence this year. My oncologist spoke with me last week about starting Lenvima/Keytruda next. I've been reading everything I can find on the combo. They say the side effects are not any worse with taking both drugs as they would be with taking one alone. She seems quite excited that the response rate for UPSC is 40%, but I'm not sure I understand what that really means. 

    Prayers!

    Thanks

    The combo is what they are suggesting for me. I am meeting with my rads doc today to get his advice. I am also thinking of getting a second opinion as I may move to be near my nurse son. DF

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    #29
    Donna, I'm glad you have

    Donna, I'm glad you have someone in medicine in the family to help you.  Good that you have a plan for trying immunotherapy.  It sounds as if you have an oncologist who is understanding, and ready to work with you.

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #30
    Decision time

    Saw my onc yesterday and we discussed all the options. The vaginectomy is the only offer of a possible cure. PET will determine if any cancer hiding elsewhere but so far seems confined to V. Surgery is major and 2 weeks in hospital then some rehab and a lifetime pee bag. Oral chemo is just a delaying tactic as is watch and wait. I have spent the last month is deep study and research and feel ready to have a conversation with the three children and get their input. End of life does not scare me as we have had to discuss this before. I, do, however,  want to make this decision with the care and study it deserves. I also want to have consensus from the children. Please do not let this posting make you sad. Rejoice with me that I got a miracle 20 years ago and have lived fully and happily for 79+ years. I have a beautiful loving family, great friends, fantastic memories and all of you. I had the most delightful Thanksgiving and Christmas is looking so fun. I share with you my deepest thoughts as many of you walk this walk and understand the emotions that go along with the disease and the treatments. I wish for each of you the sweetest of Christmas moments and come January, I will be ready to face whatever will be. Merry, merry Christmas. DF

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #31
    May God be with you

    As you make this most difficult decision. I'm suspecting the pee bag is the least of the worries in this entire adventure. I can vouch that the pee bag is not that bad. But we will all be with you in spirit as you discuss this with your loving family (so lucky to have them) and will support you whatever your decision. Have a glorious Christmas. Susan

  • MAbound
    MAbound Member Posts: 1,175 Member
    #32
    CheeseQueen57 said:

    May God be with you

    As you make this most difficult decision. I'm suspecting the pee bag is the least of the worries in this entire adventure. I can vouch that the pee bag is not that bad. But we will all be with you in spirit as you discuss this with your loving family (so lucky to have them) and will support you whatever your decision. Have a glorious Christmas. Susan

    Pee Bag

    Thanks for chiming in, CQ. Your input as to what life is like with one of those is invaluable. So many of us put a really high priority on how quality of life is after treatment and your first hand experience is invaluable. Have you had any issues with all the traveling you had planned since you got it? Have you had any infections to deal with? What Donna Faye has to think about in terms of surgical intervention sounds quite intimidating, especially for an older person, but which part of it carries the most weight in her decision? The procedure itself or the recovery and life after it? If only one had a crystal ball!

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #33
    Pee Bag

    So keep in mind girls that my bag only drains one kidney. My other kidney so far is functioning fine. I haven't had any infections so far and I've had it since July. I've figured out the wardrobe issues and found dressings that allow me to take full showers. My husband does have to change the dressing once a week and of course I can't reach back there to change it myself. But it only takes a few minutes. i a saline flush of my tube every 3 days and change the bag every month also not a big deal. Have to get the tube to my kidney exchanged every 3 months but very easy procedure under local. Can't swim or get in hot tub but oh well. Nobody would know I have it. I've had a few leakage issues I have to figure out but few and far between. Much better than stent. I think I can live with this for test of my life. Hope that helps v

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #34
    You are right

    Yes, the pee bag is way down the list. Thanks CQ for your input. The surgery is the biggie - that's why I need some input from my nurse son. He has worked for 38 years in ER and OR and now is where he sees elderly patients every day. Quality of life is so important but there is always that WHAT IF the surgery works and I do OK and no more cancer?! Oh for that crystal ball!

     

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    #35
    I'm sorry you have to make

    I'm sorry you have to make such a difficult decision. Quality of life is the most important, and it sounds like your son is such an invaluable resource to help you make that decision. Have a beautiful Christmas and my prayers and thoughts are with you.

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    #36
    Prayers for you

    Donna Faye, you will be in my prayers as you make your decision.  I hope I make it to 79 with as much grace as you have.  I hope you enjoy the holidays and then have a good conversation with your children. 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #37
    Donna Faye,  It sounds like

    Donna Faye,  It sounds like you are in a good mental space. I sure hope you do use your son's input in making your decision. It seems like you are strong and could perhaps recover well from this surgery. So much to consider and I know you will make the right decision for you and your family. Anyway, I want you to know that I hope you do get enough positive input to fight this once again. But, only if you believe you are up to it.  Merry Christmas to you! Enjoy your family, and friends. 

    Come back to us again and again and again. We are here for you sweet lady!

    Love and Hugs,

    Cindi

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #38
    Donna Faye said:

    Decision time

    Saw my onc yesterday and we discussed all the options. The vaginectomy is the only offer of a possible cure. PET will determine if any cancer hiding elsewhere but so far seems confined to V. Surgery is major and 2 weeks in hospital then some rehab and a lifetime pee bag. Oral chemo is just a delaying tactic as is watch and wait. I have spent the last month is deep study and research and feel ready to have a conversation with the three children and get their input. End of life does not scare me as we have had to discuss this before. I, do, however,  want to make this decision with the care and study it deserves. I also want to have consensus from the children. Please do not let this posting make you sad. Rejoice with me that I got a miracle 20 years ago and have lived fully and happily for 79+ years. I have a beautiful loving family, great friends, fantastic memories and all of you. I had the most delightful Thanksgiving and Christmas is looking so fun. I share with you my deepest thoughts as many of you walk this walk and understand the emotions that go along with the disease and the treatments. I wish for each of you the sweetest of Christmas moments and come January, I will be ready to face whatever will be. Merry, merry Christmas. DF

    Donna Faye, Your words are an

    inpspration, your life has been lived on your own terms. You will make the decision you need to make with your family at your side. We are here for you no matter what. I always appreciate your words of wisdom and support. Have a great Christmas with kiddos and let us know how you are doing. 

    xxoo

    Denise

     

  • Forherself
    Forherself Member Posts: 1,018 Member
    #39
    I heard chance of a cure

    So scans would be helpful.   Anyway, we have dilemnas.   Neither choice is what we hope for but there it is.  Waiting to discuss this may let you enjoy your Christmas.  I like to picture a hot air balloon.   I put all my cares in the balloon and then let it lift off.  I watch them float away.   It helps cleaar my head for alittle while.  If you want to wait.  I wish youa Merry Christmas. Hugs to you.

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #40
    Decisions...

    I am so sorry to hear of this most difficult decision you will be making. 

    It must be incredibly difficult to determine what to do next. Quality of life as opposed to the risks of options takes so much questioning and searching.

    I know you are suffering greatly. You will make the right decision for you. As Steve Leder, author of “More Beautiful Than Before” writes suffering transforms us ....in so many ways. 

    May you find comfort in knowing that so many people care about you. 

    Christmas blessings to you and your loved ones....

    ((Hug))

    Lori

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #41
    Decisions begun

    I had a wonderful Christmas with my family. On Dec. 27th, I shared all the options with one son and his mate. The discussion was so much easier than I had imagined. They are insisting that I move into their home in the coming year if I need help. We discussed all the "what ifs" and it was just wonderful to feel their love and support. I sent a detailed letter to my son in FL with copies of the docs notes. He is an RN and will be able to discuss the pros and cons of the surgery. I will tell my daughter when she returns from a trip after the first. I am feeling much better about all this and am so thankful for wise and loving children who respect my need to be honest about how I want life to be. 2020 is not looking as bleak as it did. May it be a good year for all of us on this board.

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