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  • Teamkelly
    Teamkelly Member Posts: 63
    #122
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    bob13440 said:

    question

    Lorraine's stomach has 4 holes in it from surgery that need packing every day. She's really down about this, she doesn't think they're healing and somedays the packing falls out and there's a substance that comes out with it.  Anyone else have this after their surgery and how long before it was healed? Thank you

    Hi Bob

    Hi Bob,

    My name is Nicki, I post for my sister in law Kelly. Kelly was diagnosed with stage 3C carcinomasarcoma of the uterus. This is a very rare cancer with not great outcomes. Kelly has had 3 recurrences, 2 in her brain and yet she lives a fairly active life and keeps going. Kelly is a young 68 and goes to a Sarcoma clinic in Santa Monica, she is on her 4 th or 5th treatment since recurrence. 

    one thing Kelly has done is get on medical marijuana, she takes and oil made from it at bedtime and during the day if she feels anxious.  Here is what it has done for her, it has allowed her to get deep restful sleep which your body needs to heal, it has increased her appetite so she can continue to fight and it has reduced anxiety so she can have a positive attitude. I would highly recommend it, if you live in a state where you can get it.

    All the best to you and your wife, by the way Kelly was given less than 3 months to live over a year ago, she still works out, vacations and enjoys her life between treatments. Here is a picture of Kelly today at Starbucks where she ran into her doctor.

     

    image

  • bob13440
    bob13440 Member Posts: 66
    #123
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    Teamkelly said:

    Hi Bob

    Hi Bob,

    My name is Nicki, I post for my sister in law Kelly. Kelly was diagnosed with stage 3C carcinomasarcoma of the uterus. This is a very rare cancer with not great outcomes. Kelly has had 3 recurrences, 2 in her brain and yet she lives a fairly active life and keeps going. Kelly is a young 68 and goes to a Sarcoma clinic in Santa Monica, she is on her 4 th or 5th treatment since recurrence. 

    one thing Kelly has done is get on medical marijuana, she takes and oil made from it at bedtime and during the day if she feels anxious.  Here is what it has done for her, it has allowed her to get deep restful sleep which your body needs to heal, it has increased her appetite so she can continue to fight and it has reduced anxiety so she can have a positive attitude. I would highly recommend it, if you live in a state where you can get it.

    All the best to you and your wife, by the way Kelly was given less than 3 months to live over a year ago, she still works out, vacations and enjoys her life between treatments. Here is a picture of Kelly today at Starbucks where she ran into her doctor.

     

    image

    thanks for the encouraing

    thanks for the encouraing words, Nicki, glad to hear Kely is doing well. We're just beginning our journey and honestly, the feedback fromeveryone on this board has been a god send.

  • nempark
    nempark Member Posts: 681
    #124
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    Not healing!!!

    Bob, did helen have robotic surgery? During the 70's I had surgery to remove my gall bladder and I had traditional surgery that did not heal well due to bacteria.  I had an infection which opened a hole in the cut and was seeping and did take a very long time to heal.  It left me with a nasty puckered scar on my stomach (least of our problems considering what we are dealing with now). I did not have to pack it, just had it covered with the old time plaster.

    Did Helen talked to her Doc about this?  Infection of those holes can turn out really bad if not taken in hand ASAP.

    Hope this helps. Be well guys.  

  • AWK
    AWK Member Posts: 364 Member
    #125
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    bob13440 said:

    question

    Lorraine's stomach has 4 holes in it from surgery that need packing every day. She's really down about this, she doesn't think they're healing and somedays the packing falls out and there's a substance that comes out with it.  Anyone else have this after their surgery and how long before it was healed? Thank you

    So sorry I had a bikini cut incision

    No help here.  I am sure the other ladies will chime in.  

    By the way, I was always so grateful for my husband during this journey but you remind me about how lucky I am.  As is your wife. Hugs to you both. 

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #126
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    bob13440 said:

    question

    Lorraine's stomach has 4 holes in it from surgery that need packing every day. She's really down about this, she doesn't think they're healing and somedays the packing falls out and there's a substance that comes out with it.  Anyone else have this after their surgery and how long before it was healed? Thank you

    Holes

    I didn't have this problem, but a friend of a good friend did.  She had to use something called a wound vac for quite a while, but it did finally heal and she is doing very well at this time.  You remind me so much of my husband/ best friend.  I didn't know how much he loved me until Cancer entered our lives.  Hugs to both of you,  Lou Ann

  • bob13440
    bob13440 Member Posts: 66
    #127
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    nempark said:

    Not healing!!!

    Bob, did helen have robotic surgery? During the 70's I had surgery to remove my gall bladder and I had traditional surgery that did not heal well due to bacteria.  I had an infection which opened a hole in the cut and was seeping and did take a very long time to heal.  It left me with a nasty puckered scar on my stomach (least of our problems considering what we are dealing with now). I did not have to pack it, just had it covered with the old time plaster.

    Did Helen talked to her Doc about this?  Infection of those holes can turn out really bad if not taken in hand ASAP.

    Hope this helps. Be well guys.  

    Lorraine

    she was cut all the way down her stomach. the dr. told her it's healing and the nurse that comes once a week alsosaid it is healing, but she doesn't seem to think so. I guess she's just getting frustrated, she wants to start driving and doing normal things. I tell her it will take time and it'll be ok, but words can only do so much i guess. We checked on the vacum to speed up the healing, but it's out of our price range at the moment.

  • bob13440
    bob13440 Member Posts: 66
    #128
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    bob13440 said:

    Lorraine

    she was cut all the way down her stomach. the dr. told her it's healing and the nurse that comes once a week alsosaid it is healing, but she doesn't seem to think so. I guess she's just getting frustrated, she wants to start driving and doing normal things. I tell her it will take time and it'll be ok, but words can only do so much i guess. We checked on the vacum to speed up the healing, but it's out of our price range at the moment.

    Also...

    I may start a new thread on the ovarian board. When I first seeked out help I posted on the uterine board because we were told it was in both her uterus and ovaries, I just chose one. Lorraine's cancer is ovarian cancer. I just hope I don't lose touch with all of the great women on this board. Yoe have all been very helpful. I hope this isn't rude, I was  less ecucated two months ago, hence the mistake. Keep fighting ladies, we'll do the same.

  • AWK
    AWK Member Posts: 364 Member
    #129
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    bob13440 said:

    Also...

    I may start a new thread on the ovarian board. When I first seeked out help I posted on the uterine board because we were told it was in both her uterus and ovaries, I just chose one. Lorraine's cancer is ovarian cancer. I just hope I don't lose touch with all of the great women on this board. Yoe have all been very helpful. I hope this isn't rude, I was  less ecucated two months ago, hence the mistake. Keep fighting ladies, we'll do the same.

    You bring up a really interesting point.

    I am being treated for Uterine Papillary Serous Carcinoma as are several of us on this board.  I had a tumor in my uterus as well as one on my right ovary in addition to other spreading and sites.  There is also an Ovarian Serous Carcinoma.  My doctors have treated me following the ovarian protocols the thought being the two cancers are actually one and the same just with different locations.  I do follow a couple of ovarian groups and also belong to Inspire.  

    My insurance approvals all indicate UPSC under Ovarian Cancer with a different site of origin.  The team consulting on my case from across the country all have the same approach; this includes physicians from Sloan Kettering, Dana Farber, City of Hope, MD Anderson and NIH/NCI.  I have a broad team due to unique metatastic spreading involving my heart and resistance to a variety of therapies.  There is an interesting article in last weeks Time Magazine about the Cancer Gap which discusses the idea of cellular type of cancer first, location second which is my doctors school of thought too.

    i can't recall - was your wife diagnosed with UPSC or Sarcoma?  Or an Ovarian Eplithelial cancer?  Most of us here have doctors who test for CA125 the ovarian marker.  I am also tested for CA19-9 the pancreatic marker.  It is all interesting and has brought out my inner science geek.  

    I have so enjoyed your posts and honesty.  I am also blessed with an amazing husband.  Please stay in touch.  Keeping you both in my prayers.

  • nempark
    nempark Member Posts: 681
    #130
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    sorry not Helen

    The healing process of those holes are slow, as I mentioned before.  She is okay as long as she is being seen.

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #131
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    bob13440 said:

    yes

    the day after was so encouraging! Lorraine has gotten a little weaker and more tired every day since. We're not discouraged, just a little drained. She's back for round 2, Monday. We're keeping a journal to see if there'll be a pattern we can go by. She's having some major hot flashes when she sleeps, I'm hearing that's not unusual. We're keeping her active, but trying not to over-do it. Appetite seems good, not great... BM's are much better, and her stomach is still sore, but we know it's because it's healing from surgery. If we could just get her comfortable at night to get some quality sleep, I think it would be so helpful. If anyone has any advice or comments, they'd be very appreciated. Thanks for asking about Lorraine's status!                                                                                                

    I bought a wedge to go under

    I bought a wedge to go under my pillow. It kept me elvated but I did need to worry about a mound of pillows falling over.

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #132
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    bob13440 said:

    yes

    the day after was so encouraging! Lorraine has gotten a little weaker and more tired every day since. We're not discouraged, just a little drained. She's back for round 2, Monday. We're keeping a journal to see if there'll be a pattern we can go by. She's having some major hot flashes when she sleeps, I'm hearing that's not unusual. We're keeping her active, but trying not to over-do it. Appetite seems good, not great... BM's are much better, and her stomach is still sore, but we know it's because it's healing from surgery. If we could just get her comfortable at night to get some quality sleep, I think it would be so helpful. If anyone has any advice or comments, they'd be very appreciated. Thanks for asking about Lorraine's status!                                                                                                

    I bought a wedge to go under

    I bought a wedge to go under my pillow. It kept me elvated but I did need to worry about a mound of pillows falling over.

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #133
    Options
    bob13440 said:

    yes

    the day after was so encouraging! Lorraine has gotten a little weaker and more tired every day since. We're not discouraged, just a little drained. She's back for round 2, Monday. We're keeping a journal to see if there'll be a pattern we can go by. She's having some major hot flashes when she sleeps, I'm hearing that's not unusual. We're keeping her active, but trying not to over-do it. Appetite seems good, not great... BM's are much better, and her stomach is still sore, but we know it's because it's healing from surgery. If we could just get her comfortable at night to get some quality sleep, I think it would be so helpful. If anyone has any advice or comments, they'd be very appreciated. Thanks for asking about Lorraine's status!                                                                                                

    I bought a wedge to go under

    I bought a wedge to go under my pillow. It kept me elvated but I did need to worry about a mound of pillows falling over.

  • bob13440
    bob13440 Member Posts: 66
    #134
    Options
    hello

    As I said last month, Lorraine has ovarian cancer but I posted under the uterine board. I miss posting here, felt very comfortable and like I got to know all of you.

    Her 5th week of chemo was yesterday and today has been good. The steroids they give her last for about two days, then she gradually gets weaker each day. Doc gave her a prescription for steroids,hopefully that will combat the tiredness and weakness. She barely got out of bed last weekend. She got her head shaved last Friday, was very emotional for her. Her lack of appetite concerns me, but I understand chemo does that. She also needs to drink more fluids (preferably water) but, isn't doing that enough either. It was 11 weeks ago today that our world changed, it really seems like 11 months ago. Days are so long and emotional, everything is so new and different. A lot of times I feel like she's helping me through this and I get so mad at myself. She is so much stronger than me.

    Hope you're all doing well. Thank you all for being a part of this with us.

    Bob

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #135
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    bob13440 said:

    hello

    As I said last month, Lorraine has ovarian cancer but I posted under the uterine board. I miss posting here, felt very comfortable and like I got to know all of you.

    Her 5th week of chemo was yesterday and today has been good. The steroids they give her last for about two days, then she gradually gets weaker each day. Doc gave her a prescription for steroids,hopefully that will combat the tiredness and weakness. She barely got out of bed last weekend. She got her head shaved last Friday, was very emotional for her. Her lack of appetite concerns me, but I understand chemo does that. She also needs to drink more fluids (preferably water) but, isn't doing that enough either. It was 11 weeks ago today that our world changed, it really seems like 11 months ago. Days are so long and emotional, everything is so new and different. A lot of times I feel like she's helping me through this and I get so mad at myself. She is so much stronger than me.

    Hope you're all doing well. Thank you all for being a part of this with us.

    Bob

    Bob:  Thanks for the update.

    Bob:  Thanks for the update.  The steroids should give her a boost.   Also, with regard to water, etc., get some popsicles.   It seems that is easier to tolerate and at least there is some fluid intake with it.

    Bob, take care of yourself too.   My husband is just like you.  He took and continues to take care of me and come to each and every appointment that I have.   However, I have seen the behind the scene stress that it can take on him.  I didn't let him know I saw the fear too.  But then we would take car rides and if he saw me down he would make me laugh.   He also pushed me to do things.  I could have just rolled up in a ball and sat there but I pushed myself too because I thought he wanted to do things.

    You are a great husband and it seems you two are best friends.   I am glad that you have these boards to sound off on.   

    Give Lorraine a hug for me.   Here's one for you too  (((Hug)))

    Kathy

  • bob13440
    bob13440 Member Posts: 66
    #136
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    thanks kathy

    very thoughtful post and good idea with the popsicles. that's why this board is so important to us!

  • AWK
    AWK Member Posts: 364 Member
    #137
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    bob13440 said:

    thanks kathy

    very thoughtful post and good idea with the popsicles. that's why this board is so important to us!

    I have been thinking about you and your bride.

    You are almost there!  In my mind the time from number five to the week after number six is a blur.  I do remember being just beat.  Popsicles are a great idea and worked well for me too.  I also would eat mashed potatoes and smoothies.  My doctors said to basically eat anything that sounded good just to get calories down.  Mostly I just nibbled and sipped because my husband watched my intake so closely.  I really appreciate that now!  Ensure, bananas, or Carnation Instant Milk too.  You can always call the doctor and arrange for a hydration infusion; I just got one the other week after my treatment and was like a new woman!  

    Make sure you take care of yourself too.  You are both going through a lot.  Take care and remember to take it one day at a time.  My husband and I have always been solid and loving and laughed a lot.  My experience has us closer and more bonded than I could've ever imagined.  You both will come out the other side.  Sending hugs and prayers.

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