Some prayers for my friend, please

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Double Whammy
Double Whammy CSN Member Posts: 2,832 Member
in Uterine/Endometrial Cancer #1
My good friend was dx'd with Stage 3 something UPSC less than a year ago. She has been on some treatment constantly and has had continued progression. She's switching from Topotocan to Doxil - started yesterday - because there is more progression. I don't know where, it's not important. She's pretty sick, has been hospitalized with C diff, has pneumonia, and abdominal pain which they think is cancer related. Lots of not very good things going on. CARIS testing shows Doxil should help and her health care provider was able to get it.

Please send some strong prayers, good mojo, and anything else you've got out here to California.

Thanks
Suzanne
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Comments

  • Ro10
    Ro10 CSN Member Posts: 1,561 Member
    #2
    Suzanne, will add you friend to my prayers
    So sorry to hear about your friend. Sorry for her continuous progression. I am surprised she can get doxil as a new patient, but so glad she can get to. I sure hope it makes her more comfortable. I will pray for peace and comfort for her.
  • Ro10
    Ro10 CSN Member Posts: 1,561 Member
    #3
    Suzanne, will add you friend to my prayers
    Duplicate entry, sorry.
  • debrajo
    debrajo CSN Member Posts: 1,095 Member
    #4
    Already done and for her
    Already done and for her family and the care-giver. Had heard it was beginning to make a reappearence(doxil), but really didn't think it would get here til Nov.! She is already blessed! Best, Debrajo
  • daisy366
    daisy366 CSN Member Posts: 1,458 Member
    #5
    debrajo said:

    Already done and for her
    Already done and for her family and the care-giver. Had heard it was beginning to make a reappearence(doxil), but really didn't think it would get here til Nov.! She is already blessed! Best, Debrajo

    Suzanne
    What is your friend's first name? I will pray for her and send positive energy to her.

    So sorry, Mary Ann
  • Cindy Bear
    Cindy Bear CSN Member Posts: 569 Member
    #6
    Suzanne
    Sending prayers and hugs and all good thoughts for your friend.
    Big Hugs,
    Cindy
  • Double Whammy
    Double Whammy CSN Member Posts: 2,832 Member
    #7
    Cindy Bear said:

    Suzanne
    Sending prayers and hugs and all good thoughts for your friend.
    Big Hugs,
    Cindy

    Thank you
    Her name is Mary. She has a new oncologist who has decided to call her diagnosis ovarian cancer because it's not certain whether the primary site was the ovary or uterus. I think this has opened some doors for her in terms of treatment options. Her original oncologist was treating her as endometrial/uterine cancer and as I've learned from you, there are issues with insurance coding, etc. with UPSC. New medical oncologist also specializes in gyn cancers.
    Suzanne
  • LaurelWillow
    LaurelWillow CSN Member Posts: 13
    #8
    Double Whammy said:

    Thank you
    Her name is Mary. She has a new oncologist who has decided to call her diagnosis ovarian cancer because it's not certain whether the primary site was the ovary or uterus. I think this has opened some doors for her in terms of treatment options. Her original oncologist was treating her as endometrial/uterine cancer and as I've learned from you, there are issues with insurance coding, etc. with UPSC. New medical oncologist also specializes in gyn cancers.
    Suzanne

    Mary
    I just sent a prayer out for Mary and I am in CA so it had less far to go!

    Laurel
  • HellieC
    HellieC CSN Member Posts: 524 Member
    #9
    Double Whammy said:

    Thank you
    Her name is Mary. She has a new oncologist who has decided to call her diagnosis ovarian cancer because it's not certain whether the primary site was the ovary or uterus. I think this has opened some doors for her in terms of treatment options. Her original oncologist was treating her as endometrial/uterine cancer and as I've learned from you, there are issues with insurance coding, etc. with UPSC. New medical oncologist also specializes in gyn cancers.
    Suzanne

    Just seen this
    Your friend Mary and her friends and family are in my prayers, too.
    I hope that they are able to make her comfortable and that the Doxil will work.
    Helen
  • JVN_03092012
    JVN_03092012 Member Posts: 13
    #10
    Glad too, at times prayer seems to be the only ...
    thing I have control of. So pray I will.
  • Sara Zipora
    Sara Zipora CSN Member Posts: 231
    #11
    Prayers to all from Jerusalem
    Warm wishes (((((hugs))))) and prayers from Jerusalem site of Beginnings of all major religions. This week Christians and Jews converge r as Passover and Easter were on same week. Now there are tens of thousands praying for good health!
    May all our prayers be answered!

    All the best to sister Warriorettes,
    Sara
  • light42day
    light42day Member Posts: 62 Member
    #12
    Sara Zipora said:

    Prayers to all from Jerusalem
    Warm wishes (((((hugs))))) and prayers from Jerusalem site of Beginnings of all major religions. This week Christians and Jews converge r as Passover and Easter were on same week. Now there are tens of thousands praying for good health!
    May all our prayers be answered!

    All the best to sister Warriorettes,
    Sara

    Prayers for your friend
    I'll pray for your friend, mary, too, for her healing and for peace and comfort for her.
  • fuzzytrouble
    fuzzytrouble CSN Member Posts: 212
    #13
    Sending good Mojo
    So sorry for your friend, when it happens like this and you can't do anything but be there for her or him it is so frustrating. I am sending you a big hug and big MOJO.
    Sharon
  • Double Whammy
    Double Whammy CSN Member Posts: 2,832 Member
    #14
    fuzzytrouble said:

    Sending good Mojo
    So sorry for your friend, when it happens like this and you can't do anything but be there for her or him it is so frustrating. I am sending you a big hug and big MOJO.
    Sharon

    The latest
    I'm really having a hard time with all my friend is enduring. I have a really bad case of survivor guilt AND it's just plain hard to watch someone you care about suffer.

    The latest is that she has a local recurrence in her vagina. Not surprising. But - get this: it is the first time she's seen a gyencologic oncologist! Her surgery was done by a surgical oncologist with her gynecologist assisting. As things progessed after surgery, she changed health care providers and now sees an oncologist who specializes in gyn cancers and who thought it would be a good idea for her to see a gyn oncologist. Really? Since she is being treated with Doxil for the lymph node mets, she doesn't think radiation will be used for the local recurrence.

    In the meantime, she does think the Doxil is doing something since she had some swollen, tender nodes in her neck that are no longer either swollen or tender.

    What I didn't mention in my earlier post is significant shoulder/neck pain that continues, in spite of narcotics and physical therapy. The oncologist did not think this is cancer related, rather musculoskeletal. Bone scans were clear in that area. Her shoulder pain got worse and Wednesday she saw her pcp who said she had never felt such a hard muscle in her shoulder and wanted to do an MRI because she had no idea what was going on. Thursday morning I drove her to an MRI because the pain was so bad she could not drive and she was on diludid and shouldn't drive. The radiologist also said he'd never felt such a brick hard muscle. She looked in severe pain and said she has never experienced anything as painful as this shoulder is.

    Today she got her MRI results which showed something "abnormal". That's all she knows. She has a biopsy (of what?) scheduled for Friday of next week.

    Please continue the prayers for her.

    Suzanne
  • Kaleena
    Kaleena CSN Member Posts: 2,088 Member
    #15
    Double Whammy said:

    The latest
    I'm really having a hard time with all my friend is enduring. I have a really bad case of survivor guilt AND it's just plain hard to watch someone you care about suffer.

    The latest is that she has a local recurrence in her vagina. Not surprising. But - get this: it is the first time she's seen a gyencologic oncologist! Her surgery was done by a surgical oncologist with her gynecologist assisting. As things progessed after surgery, she changed health care providers and now sees an oncologist who specializes in gyn cancers and who thought it would be a good idea for her to see a gyn oncologist. Really? Since she is being treated with Doxil for the lymph node mets, she doesn't think radiation will be used for the local recurrence.

    In the meantime, she does think the Doxil is doing something since she had some swollen, tender nodes in her neck that are no longer either swollen or tender.

    What I didn't mention in my earlier post is significant shoulder/neck pain that continues, in spite of narcotics and physical therapy. The oncologist did not think this is cancer related, rather musculoskeletal. Bone scans were clear in that area. Her shoulder pain got worse and Wednesday she saw her pcp who said she had never felt such a hard muscle in her shoulder and wanted to do an MRI because she had no idea what was going on. Thursday morning I drove her to an MRI because the pain was so bad she could not drive and she was on diludid and shouldn't drive. The radiologist also said he'd never felt such a brick hard muscle. She looked in severe pain and said she has never experienced anything as painful as this shoulder is.

    Today she got her MRI results which showed something "abnormal". That's all she knows. She has a biopsy (of what?) scheduled for Friday of next week.

    Please continue the prayers for her.

    Suzanne

    Suzanne,
    I pray for your
    Suzanne,

    I pray for your friend. It's hard enough to watch your friend go through all of this, but also it is hard when the medical treatment and/or care seems to be lacking. You are a good friend to her. Sending caring thought to you too.

    Kathy
  • jazzy1
    jazzy1 CSN Member Posts: 1,379
    #16
    Kaleena said:

    Suzanne,
    I pray for your
    Suzanne,

    I pray for your friend. It's hard enough to watch your friend go through all of this, but also it is hard when the medical treatment and/or care seems to be lacking. You are a good friend to her. Sending caring thought to you too.

    Kathy

    Suzanne
    Life just isn't always fair and boy I can relate to having difficulties watching a good friend go down and struggle. With this disease we have no control, but glad you can be with her and give her support...best we can do!!

    You originally mentioned "c-Diff", is this any better? My FIL fought this after congestive heart failure and lost his battle. C-Diff is horrible and if we can't get it in line at the beginning, the person can loose so much weight they basically don't have the strength to fight. Too many antibiotics throw one into C-diff.

    Thinking and praying for your dear friend....keep the faith!!!

    Hugs,
    Jan
  • fuzzytrouble
    fuzzytrouble CSN Member Posts: 212
    #17
    Double Whammy said:

    The latest
    I'm really having a hard time with all my friend is enduring. I have a really bad case of survivor guilt AND it's just plain hard to watch someone you care about suffer.

    The latest is that she has a local recurrence in her vagina. Not surprising. But - get this: it is the first time she's seen a gyencologic oncologist! Her surgery was done by a surgical oncologist with her gynecologist assisting. As things progessed after surgery, she changed health care providers and now sees an oncologist who specializes in gyn cancers and who thought it would be a good idea for her to see a gyn oncologist. Really? Since she is being treated with Doxil for the lymph node mets, she doesn't think radiation will be used for the local recurrence.

    In the meantime, she does think the Doxil is doing something since she had some swollen, tender nodes in her neck that are no longer either swollen or tender.

    What I didn't mention in my earlier post is significant shoulder/neck pain that continues, in spite of narcotics and physical therapy. The oncologist did not think this is cancer related, rather musculoskeletal. Bone scans were clear in that area. Her shoulder pain got worse and Wednesday she saw her pcp who said she had never felt such a hard muscle in her shoulder and wanted to do an MRI because she had no idea what was going on. Thursday morning I drove her to an MRI because the pain was so bad she could not drive and she was on diludid and shouldn't drive. The radiologist also said he'd never felt such a brick hard muscle. She looked in severe pain and said she has never experienced anything as painful as this shoulder is.

    Today she got her MRI results which showed something "abnormal". That's all she knows. She has a biopsy (of what?) scheduled for Friday of next week.

    Please continue the prayers for her.

    Suzanne

    So sorry
    Hey Suzanne I am so sorry for what your friend is going through, I wish that they find out what this latest issue is. I was on Doxil and I know it helped me, so he's hoping it will help your friend out to.
    Sharon
  • crystalblue1208
    crystalblue1208 Member Posts: 38
    #18
    Suzanne, will add you friend to my prayer

    I will pray for your friend and others who are also suffering from cancer and pain like my sister.
  • Double Whammy
    Double Whammy CSN Member Posts: 2,832 Member
    #19
    crystalblue1208 said:

    Suzanne, will add you friend to my prayer

    I will pray for your friend and others who are also suffering from cancer and pain like my sister.

    The C Diff
    I think it's under control now, but I'm not sure. She had pretty significant lymphedema in one leg and her previous oncologist lollygagged about getting her a referral for a compression sock. Things progressed with the lymphedema and she developed cellulitis. She was placed on antibiotics and exactly X number of days after antibiotic treatment, she started in with diarrhea and abdominal pain. It was the C diff but no tests were done so no one knew, just try this or that - none of which worked of course. Enter new health care provider who diagnosed it. She was hospitalized for that, it got better, then it didn't. Another hospitalization and I think it's under control now. All this while on Gemzar and then Topotecan which the cancer just sort of laughed at and continued to progress.

    Her son is getting married in September and she had just purchased fabrics for a beautiful quilt which will be the wedding gift. She's too sick to deal with it. A mutual friend/quilter is arriving here in about an hour and we are going to sew it for her. She will have the finished quilt to gift her son and new DIL. I'm so honored to be able to help with it.

    S
  • daisy366
    daisy366 CSN Member Posts: 1,458 Member
    #20
    Double Whammy said:

    The C Diff
    I think it's under control now, but I'm not sure. She had pretty significant lymphedema in one leg and her previous oncologist lollygagged about getting her a referral for a compression sock. Things progressed with the lymphedema and she developed cellulitis. She was placed on antibiotics and exactly X number of days after antibiotic treatment, she started in with diarrhea and abdominal pain. It was the C diff but no tests were done so no one knew, just try this or that - none of which worked of course. Enter new health care provider who diagnosed it. She was hospitalized for that, it got better, then it didn't. Another hospitalization and I think it's under control now. All this while on Gemzar and then Topotecan which the cancer just sort of laughed at and continued to progress.

    Her son is getting married in September and she had just purchased fabrics for a beautiful quilt which will be the wedding gift. She's too sick to deal with it. A mutual friend/quilter is arriving here in about an hour and we are going to sew it for her. She will have the finished quilt to gift her son and new DIL. I'm so honored to be able to help with it.

    S

    So sorry
    Suzanne,

    Your friends story is sad for many reasons. Her docs never referred her to the specialist that she needed and now all this. Hopefully she is getting connected with a good gyn/onc.

    Please mention a tissue assay to her for her biopsied tissue. Hopefully this will pinpoint the best treatment and she won't lose any more precious time.

    And you have no need to carry that burden of "survivor's guilt" my friend.

    Hugs to you both. Mary Ann
  • Double Whammy
    Double Whammy CSN Member Posts: 2,832 Member
    #21
    daisy366 said:

    So sorry
    Suzanne,

    Your friends story is sad for many reasons. Her docs never referred her to the specialist that she needed and now all this. Hopefully she is getting connected with a good gyn/onc.

    Please mention a tissue assay to her for her biopsied tissue. Hopefully this will pinpoint the best treatment and she won't lose any more precious time.

    And you have no need to carry that burden of "survivor's guilt" my friend.

    Hugs to you both. Mary Ann

    Update
    Things have not been going well for Mary. She has been hospitalized for over a week with congestive heart failure and clots in lungs. She is going home on hospice care. Cancer is now in her lungs and liver and once again, it's smarter than the chemo. She has had so many complications, so much progression, and all in such a short time. She was diagnosed only a year ago. This is such a shock to everyone. I think we'd all accepted that she wouldn't beat this, but we did expect some response to something instead of only one thing after another. She did have CARIS testing and was on a Doxil which was supposed to be effective. Not.

    My friend and I have the quilt top pieced now and it's off to the quilter on Thursday and it will be ready Friday. Then we just have to sew on the binding and embroider her label and attach it. She should be able to gift it to her son and fiancee early next week if all goes well.

    Once again I ask for prayers for Mary.

    Thank you all,
    Suzanne

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