LadyMox – Possible Update

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Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    Thank you, cmb, for your

    Thank you, cmb, for your sleuthing.  This is terribly sad.  That poor, young woman.  My heart breaks for her family and I think how she has touched all of our lives.  

  • BluebirdOne
    BluebirdOne Member Posts: 654 Member
    MAbound said:

    Lifeline

    There are risks that come with being on this board, sharing our stories and struggles, and responding to others. One of them is getting emotionally invested in what happens to each other and the hurt that comes when someone loses their fight. I don't think I've ever felt this helpless since being here. Her story was so compelling and I really wanted her to have a better chance of more life to enjoy after what she went through to get where she was. It all just seems so unfair, but I take comfort that she still lurked with us even after she stop posting. I hope that made her feel less alone when we kept posting that we were still concerned about her. I don't think I'll ever forget her or any of you here, for that matter. This forum is such a lifeline.

    So sad.

    Her statement that she won't see Easter really got to me, she was right. This one hit me very hard, maybe because she is the first of us that I actually knew that lost her fight, knowing that all of us are still fighting.  Did she even get 6 months after dx? Horrifying for her and her family to have to endure. I count every day I am NED as a gift...

     

  • evolo58
    evolo58 Member Posts: 293 Member
    A part of me is still hoping for the best, even so

    But there are just too, too many conicidences. That one Thingsverse picture definitely looks like her, the location, the first name, the age group. And I was wondering why she didn't stop around after some here asked about her. Like many here, I feared the worst.

    I wonder if the insurance company that kept denying her the Doxil and Avastin together didn't have a role in this. If they had allowed her to do the Doxil and Avastin together, I wonder if the outcome would have been better; if she might have had more time here. She shouldn't have had to jump through so many hoops to get the treatment she needed. She had MMMT, I believe, which ... well ... if we UPSC patients think we're under-represented, MMMT patients have it far worse. I am so tired of insurance games. It's ridiculous.

    My condolences to her family and friends.




  • zsazsa1
    zsazsa1 Member Posts: 565 Member
    LadyMox stated that it was

    LadyMox stated that it was endometrial adenocarcinoma, stage IVB.  I too was so angry about the insurance denial.  She was in no shape to fight that battle with the insurance, and there was nothing that any of us could really do to help her.  Bluebird, you put into words my feelings too, since she was of our "era" on the board, and died so quickly of her disease, and was just so young.  When I saw that her Ca-125 had come down from 120 at diagnosis to about 12 after a few rounds of chemo, but then the scan showed that the tumor had doubled in size during that time, I was devastated for her.  And fearful for myself.

    I hope that the messages of support to her from all of us were some comfort to her in her struggle.

  • evolo58
    evolo58 Member Posts: 293 Member
    zsazsa1 said:

    LadyMox stated that it was

    LadyMox stated that it was endometrial adenocarcinoma, stage IVB.  I too was so angry about the insurance denial.  She was in no shape to fight that battle with the insurance, and there was nothing that any of us could really do to help her.  Bluebird, you put into words my feelings too, since she was of our "era" on the board, and died so quickly of her disease, and was just so young.  When I saw that her Ca-125 had come down from 120 at diagnosis to about 12 after a few rounds of chemo, but then the scan showed that the tumor had doubled in size during that time, I was devastated for her.  And fearful for myself.

    I hope that the messages of support to her from all of us were some comfort to her in her struggle.

    Looking at the old posts

    I don't see any MMMT mentioned, particularly in her profile, so I seem to be mistaken. 

    What  saddens me further about her situation ... I don't think she was even able to have surgery. The onco was still trying to shrink the problem area, from what I could tell. She was so looking forward to the possibilty of the tumor being removed. She signed up in September, and from the tone of her posts, just found out she had cancer sometime around then. Only five months or so ... it happened so quickly. And her family tried so, so hard to get her treatments, despite the insurance company. 

    The other possibility re Lady Mox was that she had the surgery, but also had awful complications. Mostly likely, though, she would have mentioned the surgery date here, but maybe everything happened so quickly. 

    By the way, cmb, thank you for archiving the posts you were able to save. Without those, we would have lost a whole lot more than we did.




     

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    I forgot that didn't have

    I forgot that she didn't have surgery right away. I thought that was odd. I know that's common for breast cancer. Do chemo first and then do surgery, but I've never heard of that with uterine cancer. It looks like she was diagnosed in August 2018.  This is really just awful. I really wish she could have had that second opinion.

    Recently, I heard that an insurance company was sued because they didn't want to pay for proton beam therapy that was recommended by her doctors. The patient died and the family sued and won. People dealing with cancer shouldn't have to fight the insurance companies to get treatment their doctors recommend. It's just crazy.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    Quality of Care

    I was really concerned about her quality of care. I agree that it didn’t make sense that she didn’t have surgery. Did anyone on here not have surgery as their first line treatment?  Then when she did get a second opinion, apparently the hospital didn’t send her records and apparently she didn’t know she could carry her records and disks with her. I don’t know who was fighting the insurance company for her but my philosophy is get the care you need when you need it and fight them later. They can’t get blood out of a stone. Insurance companies can’t deny care, they can just deny payment. It appears that she so much could have benefited from a good patient advocated.   I’m afraid she fell through the cracks. I really don’t think in this day and age that someone with this diagnosis should have died in 6 months. It makes me so mad how treatment varies so much in this country which effects survivorship. 

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    Sad!

    This is such sad news!  D*mn insurance companies!  Praying she is at peace!

  • Forherself
    Forherself Member Posts: 961 Member
    I believe LadyMox

    had such a large tumor at diagnosis that they hoped to shrink the tumor before she had surgery.  I don't think she ever had surgery.   it was inoperable.   She did go to a reputable cancer center.  Her cancer doubled in size while her CA-125 went way down and she was receiving chemotherapy.  I don't think she got bad care.   Remember every person is different.  One of my high school friends just died of cancer after finding out he had it just before Christmas.  It is hard to accept 

    LadyMox was posting when I first joined the board so I was reading every post. RIP

  • zsazsa1
    zsazsa1 Member Posts: 565 Member
    Yes, her tumor was inoperable

    Yes, her tumor was inoperable at diagnosis.  The hope was that chemo would shrink it so that surgery could be done, but as we know, that didn't happen.  Nothing that she reported about her medical care raised any concern of inadequate care.

  • BluebirdOne
    BluebirdOne Member Posts: 654 Member
    zsazsa1 said:

    LadyMox stated that it was

    LadyMox stated that it was endometrial adenocarcinoma, stage IVB.  I too was so angry about the insurance denial.  She was in no shape to fight that battle with the insurance, and there was nothing that any of us could really do to help her.  Bluebird, you put into words my feelings too, since she was of our "era" on the board, and died so quickly of her disease, and was just so young.  When I saw that her Ca-125 had come down from 120 at diagnosis to about 12 after a few rounds of chemo, but then the scan showed that the tumor had doubled in size during that time, I was devastated for her.  And fearful for myself.

    I hope that the messages of support to her from all of us were some comfort to her in her struggle.

    We were all rooting for her...

    No doubt that the insurance denial contributed to her death, no one will ever know if she would have overcome the cancer had she been approved, or at least had more time and hope. Her death is the stuff of my nightmares, forcing me to come back to reality and denial, but also reminded of the cruel path this disease takes. Our support of one another not only to educate but to commiserate when the outcome is devastating is critical. 

  • evolo58
    evolo58 Member Posts: 293 Member

    Quality of Care

    I was really concerned about her quality of care. I agree that it didn’t make sense that she didn’t have surgery. Did anyone on here not have surgery as their first line treatment?  Then when she did get a second opinion, apparently the hospital didn’t send her records and apparently she didn’t know she could carry her records and disks with her. I don’t know who was fighting the insurance company for her but my philosophy is get the care you need when you need it and fight them later. They can’t get blood out of a stone. Insurance companies can’t deny care, they can just deny payment. It appears that she so much could have benefited from a good patient advocated.   I’m afraid she fell through the cracks. I really don’t think in this day and age that someone with this diagnosis should have died in 6 months. It makes me so mad how treatment varies so much in this country which effects survivorship. 

    I didn't.

    Because the nodules were so many initially, the onco opted for neoadjuvant treatment ... three chemos before, three after (in my case, it was actually five after). It's not typical, but not uncommon.

  • janaes
    janaes Member Posts: 799 Member
    I thought i remembered her

    I thought i remembered her posting something that said her fsmilyvwas going to help pay for the chemo drug that the insurance wouldnt cover. I thought she was taking it. Tell me if im wrong though.

  • evolo58
    evolo58 Member Posts: 293 Member
    janaes said:

    I thought i remembered her

    I thought i remembered her posting something that said her fsmilyvwas going to help pay for the chemo drug that the insurance wouldnt cover. I thought she was taking it. Tell me if im wrong though.

    I would wonder, though ...

    How long they could do it. Avastin is really expensive ... in "insurance-land", it's 25K! (Source ... my own bill.) With adjustments, it would be much cheaper of course, but how much?

  • Kathy G.
    Kathy G. Member Posts: 244 Member
    So incredibly sad.

    So incredibly sad.

    Hope she has found peace.

  • Armywife
    Armywife Member Posts: 451 Member
    Oh, dear

    I hate to see this.  I'm sorry for her struggle, and praying for her family in their grief.