I could use some help please.....

antcat
antcat Member Posts: 270
edited September 2011 in Ovarian Cancer #1
Hi everyone, well got my CT scan results today....they weren't good. Tumors still have grown and it's very discouraging...earlier last year was on gemzar/carbo until I developed allergic reaction to carbo and that part had to be stopped. Gemzar didn't help. Took a few months break and started with new cancer center in Oct. But, since then, nothing seems to have helped, it's like a shopping list...if this doesn't work, then we try this, if that doesn't work, we try something else. Most recently, I was on Taxotere and now they gave me a choice of Vinorelbine or Alimta. Decided that I was going to call it quits where I go now and go to a local oncologist in my area, one that will work with my primary care and gyn/onc. I honestly feel that maybe I haven't been getting the right dose of chemo because when I was on Taxotere originally 5 years ago, it worked beautifully. But, I'm not the dr. and I am really tired of being treated like a "try this, try that". If they can't find the right chemo, then they should have better ways of finding out what's good for you. Has anyone ever been on either one of these drugs. It wouldn't be in combination with anything else, as they will both be given separately, whichever one I choose. I've decided to take a little chemo break until I can get to see the new dr. I honestly just felt like a medical record # where I was going and not treated as "a person". I guess I'm just venting but would be interested to know if anyone has ever been on either one of these drugs. I think I did read where some people were on Alimta. Thanks for listening.

Comments

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #2
    Can't help you with the drugs
    But do you have some tumor stashed anywhere that they could use for molecular profiling? Have you looked into the Clearity Foundation?
    www.clearityfoundation.org/
    Alternatively, there is a blood test that is run through Biofocus Labs in Germany that tests the cancer cells for sensitivity not only to chemotherapies, but also to integrative therapies like high dose vitamin C. This is an expensive test, $2,100
    http://www.biofocus.de/PDF/Onkologie/BF_111_Brochure_M-Oncology.pdf
    Sorry, I know this doesn't answer your question, but if I was in your shoes, I would want to know what would fight the cancer instead of just taking pot shots and hoping to hit something.
    Hoping for the best for you.
    Take care
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #3
    Tethys41 said:

    Can't help you with the drugs
    But do you have some tumor stashed anywhere that they could use for molecular profiling? Have you looked into the Clearity Foundation?
    www.clearityfoundation.org/
    Alternatively, there is a blood test that is run through Biofocus Labs in Germany that tests the cancer cells for sensitivity not only to chemotherapies, but also to integrative therapies like high dose vitamin C. This is an expensive test, $2,100
    http://www.biofocus.de/PDF/Onkologie/BF_111_Brochure_M-Oncology.pdf
    Sorry, I know this doesn't answer your question, but if I was in your shoes, I would want to know what would fight the cancer instead of just taking pot shots and hoping to hit something.
    Hoping for the best for you.
    Take care

    Multiple drug resistance
    I am not sure how often you are reading the postings on the discussion board; however, you are certainly not alone. I am sorry that you are in this predicament. Your situation seems to reflect the story of many ovarian cancer survivors who come out of remission a second or third time. I am not sure if you are on your first recurrence or second one. Wherever you are, you are dealing with multiple drug resistance because your scans are not showing improvement at this time. Giving a higher dose of an ineffective chemo isn't going to help as the cancer has figured out how to protect itself from a chemo that was previously effective.

    I have read a theory about ovarian cancer that might explain WHY a particular chemo works great initially but not subsequently in many survivors. Considering the stem cell theory of solid tumors, it would make sense that the "daughter cells" are killed off by chemo but the cancer stem cells create NEW daughter cells resistant to the previous chemo.

    Chemo doesn't kill off the cancer stem cells--it is the immune system that keeps the cancer stem cells inactive or kills them. I think some women have ovarian cancer that originates from a different pathway--NOT from the cancer stem cells. Those women do very well on chemo. Others are not so fortunate.

    I decided to try immune therapy at a clinic in Mexico because I suspected that I might be one of the unlucky survivors who could be going down the multiple drug resistant road. It is too soon to tell if I am getting results yet. I will post my progress or lack thereof accordingly.

    I hope the new program works for you. I have heard of survivors using navelbine and Alimta but not sure if they were effective for anyone. I wish we could get stem-cell therapy here in the US.
  • jloe
    jloe Member Posts: 174
    #4
    Alimta/Carbo
    Ancat, I've been in a very similar battle like you for over 5 years and only had a few months of remission 4 years ago. I've been living almost non-stop with chemo and surgery and still plugging along. I am currently on Alimta as a single agent because I also had a very bad reaction to carbo. The reaction is very common with carbo and you are not the only one but they may have already told you that. My cycle started out as Alimta/Carbo every 3 weeks for 6 cycles. Cycle 4 I had the bad reaction so I'll finish 5 & 6 with only Alimta. then the CT/PET at the end of October. I find that the Alimta is very easy to tolerate and my blood counts have been very good. However, I have had my spleen removed and that helps with the red count. I have no nausea and no hair loss or joint aches or pain. It's been one of the easiest so far. My CA125 is always low so that's not a great marker for me. I do anticipate a surgery because one is pressing up against the bowel but my gyn/onc will try to put that off as long as possible. I am also told like you there are a lot of other chemos available including Nelvabine. It's a real struggle and I get fed up as well. The balancing act for our gyn/onc is the art of putting together treatments that won't prevent us from continuing to be able to receive more treatment without permanent damage to our blood counts and other organs. Just try to remeber that they are looking at OVCA as chronic illness and many are living with it. I hope this helps and good luck with the Alimta. J OXOXO
  • Mwee
    Mwee Member Posts: 1,338
    #5
    frustration
    I can't help with suggestions for your next chemo, although I feel your frustration. I've been on many different chemos for the past 21 months. My initial treatment, 5 1/2 years ago worked beautifully and I had a 3 year remission. My current chemo (cisplatin/gemzar one week and gemzar the next) has been keeping my numbers steady, but not in the normal range. I'm being treated as a cronic OVCA patient. I'm concerned that you are feeling like a number. This is not an easy road that we are on and there are many days that I question how long I can deal with this. A break might do you a world of good. I would love to see you have a medical team that will take the time to address your concerns. Please let us know how you make out with this.
    (((HUGS))) Maria
  • antcat
    antcat Member Posts: 270
    #6
    Mwee said:

    frustration
    I can't help with suggestions for your next chemo, although I feel your frustration. I've been on many different chemos for the past 21 months. My initial treatment, 5 1/2 years ago worked beautifully and I had a 3 year remission. My current chemo (cisplatin/gemzar one week and gemzar the next) has been keeping my numbers steady, but not in the normal range. I'm being treated as a cronic OVCA patient. I'm concerned that you are feeling like a number. This is not an easy road that we are on and there are many days that I question how long I can deal with this. A break might do you a world of good. I would love to see you have a medical team that will take the time to address your concerns. Please let us know how you make out with this.
    (((HUGS))) Maria

    Thank you everyone
    For your kind replies and responses. I am getting a medical oncologist that my primary care doc has recommended. I feel it is a good move, as my primary care doc, med oncologist and gyn/onc all know each other and are all affiliated with the same hospital, which I think is important, should I have to go to the hospital. I'm really hoping they tell me I can take a break for about 2 months, but not sure. After 12 straight months of chemo, I don't think 2 months is too much to ask for especially since my nephew would like to go to Disney World maybe in November. So, I guess I'll just wait and see. Thank you again everyone.

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