Good news to report

Mwee
Mwee Member Posts: 1,338
in Ovarian Cancer #1
Hi, my loves,
Many of you might know that I've been chemoing for the past 22 months for my first recurrance. (for newer sisters, I was diagnosed 3C/May 2006 and had about 3 years of NED). For the past several months, my CA-125s have stayed steady at around 78. I had become resigned to thinking that chemo was at least holding me steady. Imagine my shock when my Ca-125s dropped this time to 48! The whole ONC office knew about my numbers.... dare I hope that I might get some time off from endless chemo?.... yes!... not yet, but just maybe.

The NOT so excellent news is that the cisplatin that seems to be working on those pesky cells is not available! Like Taxol (TAXOL, for heavens sake... the gold standard?) doxil, and I believe 5 chemo drugs are all in such short supply that they are not available. I've been lost in my chemo haze for the past week and have no idea if this is the same problem in all areas. What the #### is going on?

I want to add here that during these endless cycles of chemo, there have been many times when I questioned whether or not I should continue.... then I come here and am humbled by the courage, humor, strength and love that I find.
Love you all............... (((HUGS))) Maria

Comments

  • sarahb74
    sarahb74 Member Posts: 81 Member
    #2
    Congratulations
    I'm really happy for you. Let's hope for even lower numbers in the future.

    I'm from the UK and was told when I had my last doxil infusion that there was a shortage of doxil. They said the problem was a worldwide one which is quite scary
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #3
    sarahb74 said:

    Congratulations
    I'm really happy for you. Let's hope for even lower numbers in the future.

    I'm from the UK and was told when I had my last doxil infusion that there was a shortage of doxil. They said the problem was a worldwide one which is quite scary

    I am so very happy
    for you. you deserve a break!!!!!!.I go to my gyn/onc Monday for my three month check-up. It is very scarey there is a chemo shortage. I really don't understand why. Maybe you will be done with chemo for good and be ned forever and ever,val
  • clamryn
    clamryn Member Posts: 508
    #4
    Hi Maria
    Maria, it is so good to see your smiling face. I have missed you. I am so glad for you that the number went down. That is great.

    I too have questioned myself as to continuing with the whole process. Especially recently since I have been so sick. I wonder would it be better to have quality of life rather than try to make it through each day sick. But, like you, I see all of our strong teal sisters and they put on their big girl panties and fight like hell. So my fight goes on.

    Maria keep the good reports coming.

    ((((hugs))))
    Linda
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #5
    Dear Maria
    Whenever I see your sweet smiling face, it makes me smile... no matter what kind of day I'm having, or what kind of mood I'm in. Hoping and praying that you get to take a chemo break soon. Keeping you in my thoughts and prayers,
    Big Hugs,
    Cindy
  • carolenk
    carolenk Member Posts: 907 Member
    #6
    Cindy Bear said:

    Dear Maria
    Whenever I see your sweet smiling face, it makes me smile... no matter what kind of day I'm having, or what kind of mood I'm in. Hoping and praying that you get to take a chemo break soon. Keeping you in my thoughts and prayers,
    Big Hugs,
    Cindy

    Chemo shortage
    All the chemos that are in short supply are off patent & no longer profitable to make. That's the only reason there's a chemo shortage.

    Glad to hear your good news, Maria, you certainly are one tough cookie!
  • Barneygirl
    Barneygirl Member Posts: 90
    #7
    Great News!
    Fantastic news Maria! Hopefully that number will continue to creep downward.

    Laura
  • kayandok
    kayandok Member Posts: 1,202 Member
    #8
    Dearest Maria,
    this is wonderful news I just had the cisplatin in CA a few weeks ago, and didn't hear anything about a shortage. I would be surprised if it is a permanent problem. Cisplatin is as old as the hills and very reasonable to boot. Although maybe those are reasons to be in short supply?! And can you substitute the carboplatin for your cisplatin until you can get it? That might be a good confusetheheckout those pesky cells tactic too. Is your second agent still the gemzar?

    I start the carbo/gem this week. I was assinged cisplatin/cytoxan/avastin by my doctor but still working on getting that combo, so I am going to do the carbo/gem for 3 months (also was excellent on my chemo assay).

    Hoping those numbers keep going DOWN for you!

    Hugs,
    kathleen


    PS I have also struggled with how much more of this toxin I can handle. I was ready to throw in the towel, but my awesome husband pushed hard for me to go do another surgery, and then continue. I went kicking and screaming, but am so glad I did. Actually, I have thought many times that I would rather do surgery once a year, and forget the chemo junk, many times! But, I suppose our bodies can only take so much of that too!
  • Mwee
    Mwee Member Posts: 1,338
    #9
    kayandok said:

    Dearest Maria,
    this is wonderful news I just had the cisplatin in CA a few weeks ago, and didn't hear anything about a shortage. I would be surprised if it is a permanent problem. Cisplatin is as old as the hills and very reasonable to boot. Although maybe those are reasons to be in short supply?! And can you substitute the carboplatin for your cisplatin until you can get it? That might be a good confusetheheckout those pesky cells tactic too. Is your second agent still the gemzar?

    I start the carbo/gem this week. I was assinged cisplatin/cytoxan/avastin by my doctor but still working on getting that combo, so I am going to do the carbo/gem for 3 months (also was excellent on my chemo assay).

    Hoping those numbers keep going DOWN for you!

    Hugs,
    kathleen


    PS I have also struggled with how much more of this toxin I can handle. I was ready to throw in the towel, but my awesome husband pushed hard for me to go do another surgery, and then continue. I went kicking and screaming, but am so glad I did. Actually, I have thought many times that I would rather do surgery once a year, and forget the chemo junk, many times! But, I suppose our bodies can only take so much of that too!

    Thanks all... you're the best!
    Kathleen.. I'm now allergic to carboplatin, so they switched me over to cisplatin added with the gemzar. I'm with you on the surgery front. Hug that awesome husband of yours, from all of us, for his support. If they can't get the cisplatin for me, my ONC said he would substitute taxitore (sp?). I'm keeping a picture in my mind of pesky cells throwing in the towel and crying UNCLE before I do!
    (((HUGS))) Maria
  • srwruns
    srwruns Member Posts: 343
    #10
    Mwee said:

    Thanks all... you're the best!
    Kathleen.. I'm now allergic to carboplatin, so they switched me over to cisplatin added with the gemzar. I'm with you on the surgery front. Hug that awesome husband of yours, from all of us, for his support. If they can't get the cisplatin for me, my ONC said he would substitute taxitore (sp?). I'm keeping a picture in my mind of pesky cells throwing in the towel and crying UNCLE before I do!
    (((HUGS))) Maria

    This is wonderful update!
    This is wonderful update! Boy do you work hard!
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #11
    I pray that you will get
    I pray that you will get your chemo break for more than a few weeks. I pray that your numbers and OVC will go back into remission. I pray and hope... :) You are one strong lady. Your courage has helped me through some of my chemos. If you can do it...so can I. This group is the strongest I have ever known.

    It takes courage to hook up to the chemo drip as often as we do. hugs...
  • carolyn45
    carolyn45 Member Posts: 100
    #12
    You are amazing!
    I had no idea, Maria, that you had been on chemo for 22 months. Holy Toledo!! I don't know how you do it!! 6 rounds was plenty for me. I think your incredible persistence is in the process of overpowering those nasty cells. That's a fabulous drop and hopefully an indicator of what is to come--another long period of NED. I'll be praying like crazy for that outcome. Big hugs to you, Carolyn

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