Uterine Papillary Serous Carcinoma (UPSC) -- new member of the sisterhood

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Comments

  • norma2
    norma2 Member Posts: 479
    #22
    Always Hopeful said:

    Eye Makeup & Big Earrings!
    Mary ann,

    So the trick to female baldness is all in the eye makeup and big earring! I love it! Did you wear sunblock on your head? I would imagine one would have to. I do think shaving it off is probably better than buzzing it. I'm just about at that point. I just can't stand the falling strands anymore.

    Thanks for your encouragement.

    Peace and hope,

    JJ

    Big earrings and a big smile!!!
    JJ I found that when folks stared at my baldness I just gave them a big smile!! Baseball caps worked better for me. The low profile ones are a permanent part of my wardrobe right now. I have them in every color. Since my hair is a little longer a whole 1" LOL(tried to take a pic and put it in my profile but, am horribly inept at computer things, will have to wait till my teenager gets home.) I have been venturing out without the caps. It is all in how you look at it, honey. Ya gotta love a bald woman with a smile. {{{hugs}}}
  • Always Hopeful
    Always Hopeful Member Posts: 234
    #23
    norma2 said:

    Big earrings and a big smile!!!
    JJ I found that when folks stared at my baldness I just gave them a big smile!! Baseball caps worked better for me. The low profile ones are a permanent part of my wardrobe right now. I have them in every color. Since my hair is a little longer a whole 1" LOL(tried to take a pic and put it in my profile but, am horribly inept at computer things, will have to wait till my teenager gets home.) I have been venturing out without the caps. It is all in how you look at it, honey. Ya gotta love a bald woman with a smile. {{{hugs}}}

    LOVE IT! LOVE IT! LOVE IT!
    Norma,

    You go, Girl! I love your long hair and LOL at your closing sentence.

    I, too, have started a cap collection. Although I have the wig, I just not wanting to wear it...not yet, anyway. I do love your "big smile" response.

    Today's accumulated baldness recommendations: eye makeup...big earrings...and a BIG smile! You have to love it!!!

    Peace and hope,

    JJ
  • Always Hopeful
    Always Hopeful Member Posts: 234
    #24
    norma2 said:

    Big earrings and a big smile!!!
    JJ I found that when folks stared at my baldness I just gave them a big smile!! Baseball caps worked better for me. The low profile ones are a permanent part of my wardrobe right now. I have them in every color. Since my hair is a little longer a whole 1" LOL(tried to take a pic and put it in my profile but, am horribly inept at computer things, will have to wait till my teenager gets home.) I have been venturing out without the caps. It is all in how you look at it, honey. Ya gotta love a bald woman with a smile. {{{hugs}}}

    LOVE IT! LOVE IT! LOVE IT!
    Norma,

    You go, Girl! I love your long hair and LOL at your closing sentence.

    I, too, have started a cap collection. Although I have the wig, I just not wanting to wear it...not yet, anyway. I do love your "big smile" response.

    Today's accumulated baldness recommendations: eye makeup...big earrings...and a BIG smile! You have to love it!!!

    Peace and hope,

    JJ
  • Always Hopeful
    Always Hopeful Member Posts: 234
    #25
    daisy366 said:

    JJ and Maggie
    Welcome to the UPSC sisterhood to both of you.

    JJ, I'm also glad you enjoyed the communion. Sounds like you handled it fine. Re: the bald head - I decided to shave mine off and enjoy the freedom of it all - went to work and everywhere bald and it was fine. Shaved me head weekly to get the peach fuzz off. Remember eye makeup and big earrings!!

    Maggie, Re: PET scan. My doc prefers them to CT - maybe each practice is different. But I think they (PET) expose us less to Xrays. Anyway, if you make a big stink with you insurance and can get the doc to do a peer to peer review you may get it approved like mine did recently. Also, I beleive medicare pays for PET scans without much problem - check out since you are of medicare age.

    Blessings to you. Mary ann

    Profile Page
    Mary ann,

    I just clicked to your profile page. So many of your responses on your page seem to mirror my own experiences. How wonderful to be able to redefine the way we live because of our diagnoses...another good thing that can come from something not so good.

    Peace and hope,

    JJ
  • jazzy1
    jazzy1 Member Posts: 1,379
    #26
    Always Hopeful said:

    Thanks so much!
    Dear Doam,

    I am so amazed at the compassion and guidance that you, and so many others, have offered. Who would believe that perfect strangers provide such support? It is truly such a beautiful experience.

    This past Monday, I went to have my blood checked between my treatments. The numbers did improve so my chemo onc didn't feel Neulasta was necessary but stated that is always something we can and will do if necessary. Could you perhaps fill me in on your experiences with it? How often do you have to have it...do you self inject...did you experience side effects?????? Any info would be much appreciated.

    Prayers are coming your way, too.

    Peace and hope,

    JJ

    Neulasta
    Hi JJ,

    I had chemo for 3 rounds and then 33 sessions of radiation. When I visited by chemo oncologist he mentioned after the last 3 chemo sessions lets give me a neulasta shot. He looked at my numbers after 3 chemo and my white count was a bit low and knew I didn't want to stop with chemo due to low counts. Therefor, I had the shot the day after my chemo session which built up my immune system. The shot made me oh so tired and my bones ached. Very weird sensation is all I can say now. Well worth it as I never had to post-pone a chemo round. No you do not self inject, the RNs will do that at their office.

    I will tell you once you start the shot, apparently it must be administered after the remaining chemo sessions. Don't ask why, I just do what the doc tells me. ALso, most insurance co's do not pay for this shot, therefore have the pre-qualify you before the shot. Cost is approx $8000. Luckily Anthem covered 100% of mine...wow!!

    Hang in there!
    Jan
  • Always Hopeful
    Always Hopeful Member Posts: 234
    #27
    jazzy1 said:

    Neulasta
    Hi JJ,

    I had chemo for 3 rounds and then 33 sessions of radiation. When I visited by chemo oncologist he mentioned after the last 3 chemo sessions lets give me a neulasta shot. He looked at my numbers after 3 chemo and my white count was a bit low and knew I didn't want to stop with chemo due to low counts. Therefor, I had the shot the day after my chemo session which built up my immune system. The shot made me oh so tired and my bones ached. Very weird sensation is all I can say now. Well worth it as I never had to post-pone a chemo round. No you do not self inject, the RNs will do that at their office.

    I will tell you once you start the shot, apparently it must be administered after the remaining chemo sessions. Don't ask why, I just do what the doc tells me. ALso, most insurance co's do not pay for this shot, therefore have the pre-qualify you before the shot. Cost is approx $8000. Luckily Anthem covered 100% of mine...wow!!

    Hang in there!
    Jan

    $8000...wow!!!!!
    Hi Jan,
    Thanks for the neulasta info. I can't believe the cost! I guess the bone aches are because of the bone marrow being prodded to produce more. Did these symptoms last for many days?

    I do wonder if my insurance will pay for this, if necessary. The pharmaceutical companies are really unbelievable! Are they trying to recoup all the research and development costs that were expended in order to market the product? $8000 per shot?????????????????

    Peace and hope,

    JJ
  • kkstef
    kkstef Member Posts: 688 Member
    #28
    Always Hopeful said:

    $8000...wow!!!!!
    Hi Jan,
    Thanks for the neulasta info. I can't believe the cost! I guess the bone aches are because of the bone marrow being prodded to produce more. Did these symptoms last for many days?

    I do wonder if my insurance will pay for this, if necessary. The pharmaceutical companies are really unbelievable! Are they trying to recoup all the research and development costs that were expended in order to market the product? $8000 per shot?????????????????

    Peace and hope,

    JJ

    Yup....$8,000+ per injection
    I had neulasta 24 hours after treatment 3, 4 and 5. I also had a transfusion of 2 packed cells and was unable to get my counts up to the "safe stage" so my chemo was discontinued after 5 treatments. I had very little bone pain. I went to a hospital out patient dept and the nurse gave my injection...in the tummy. It really did not hurt and I had some shooting bone pains for a day or two...but not bad. The nurse told me to take Tylenol if .
    I needed it.

    Medicare did cover the injections and my tie-in paid my share of the 20%, thank goodness. Yes, one wonders how drug companies justify such a price tag!

    Best wishes to you!

    Karen
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #29
    Always Hopeful said:

    Eye Makeup & Big Earrings!
    Mary ann,

    So the trick to female baldness is all in the eye makeup and big earring! I love it! Did you wear sunblock on your head? I would imagine one would have to. I do think shaving it off is probably better than buzzing it. I'm just about at that point. I just can't stand the falling strands anymore.

    Thanks for your encouragement.

    Peace and hope,

    JJ

    sunblock
    I did not use this since I had my chemo in the winter/spring months (in FL). But I think it would be advisable or hats in summer.

    Good luck!!
  • DaughterNo1
    DaughterNo1 Member Posts: 14
    #30
    Always Hopeful said:

    Profile Page
    Mary ann,

    I just clicked to your profile page. So many of your responses on your page seem to mirror my own experiences. How wonderful to be able to redefine the way we live because of our diagnoses...another good thing that can come from something not so good.

    Peace and hope,

    JJ

    UPSC in lung
    I have posted my 77 year old mother's story previously. She was diagnosed 2 years ago with Stage 4 uterine cancer (we found out later it was UPSC). She had a liver tumor removed in 2008, then a quadruple heart bypass in 2009 (phew!). Her PETS were clear until April 2010 when a small 8 mm spot lit up on her left lung. Spot was removed last week - yes, it was the original uterine cancer but they got all of it. We don't think she will need more chemo or radiation.

    My question is this: Has anyone else had UPSC that metasticized to the lung or beyond? Mom's oncologist told us last year that UPSC isn't the type of cancer that "travels". She is doing really well but now we are worried about where the next spot will show up.

    By the way, my mom gets PET scans every 3 to 6 months with no grief from her insurance (AARP and Blue Cross) Her doc at Cedars Sinai in LA enrolled her in a program where she gives permission for her results to be released to various studies. This information should help future patients get approval for PET scans.

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