Gemzar & Avastin - Need Advice

clamryn
clamryn Member Posts: 508
edited March 2014 in Ovarian Cancer #1
Well I just got back from my doctor's appointment. Not very good news. The spot in my liver has grown. It is now 1 3/4 inches. It was only an 1 inch. (sorry I don't do cm). So the Metformin pill did not do anything for me. I also have another spot that lit up on the PET/Scan a lymph node the size of 1/2 inch. It is along side of the esophagus in the chest area.

The doctor wanted to start me on Gemzar & Avastin and I set up the appointment to start 12/29. When I got home the nurse called to tell me that the insurance company would not approve for both of them to be given together. So my doctor will be putting me on Avastin and see how it works. Have any of you had to take both and if so how did it work for you? Do you think the Avastin will work by itself? I just didn't know if I should fight to get both of them at the same time with the insurance company.

Thanks for the help
Linda

Comments

  • Mwee
    Mwee Member Posts: 1,338
    #2
    Hi Linda
    I don't do "cms" either, but I think I'd like to get a hold of your insurance co. and see why they don't want to pay for what your Dr. wants you to have. I'm on Gemzar/carbo and then just Gemzar the next week. I've never had Avastin, but here'e to it kicking butt.
    (((HUGS))) Maria
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #3
    FIGHT!
    I've read that Avastin works best WITH another agent initially. Then it can be used as a singe maintenance agent. Research also shows it works best over long term use.

    I was on Gemzar/Carbo. Unfortunately I had an allergic reaction to the Carbo. I continued to receive Gemzar alone for maybe 5 months. It held me stable but no disease shrinkage.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #4
    nancy591 said:

    FIGHT!
    I've read that Avastin works best WITH another agent initially. Then it can be used as a singe maintenance agent. Research also shows it works best over long term use.

    I was on Gemzar/Carbo. Unfortunately I had an allergic reaction to the Carbo. I continued to receive Gemzar alone for maybe 5 months. It held me stable but no disease shrinkage.

    NANCY: what kind of allergic reaction to the carbo?
    NANCY: what kind of allergic reaction to the carbo? I started carboplatin last Thursday and have my toes and fingers all crossed that THIS chemo drug will beat back the cancer progression that occured during my failed attempts with Taxol and with Doxil. (If carbo doesn't work I'm afraid they'll assume my cancer is now totally chemo resistant!) They will give me the skin prick allergy test before EVERY carbo infusion, so they obviously think there's a good chance I'll be allergic to it. The oncology nurse said people get increasingly allergic to it and I did the 6 carbo/taxols in late 2008/early 2009, so I already have carboplatin build up apparently. Did you discover your allergy to carbo with that pre-infusion skin-prick test, or did you have a reaction during an infusion? I just want to know what to look for.

    I've felt yukky for the past week after each meal since I got my 1st carbo infusion, and will be surprised if my RBC isn't low since I feel lightheaded with the slightest exertion. & yet I DESPARATELY want to stay on carboplatin and for SOMETHING to work even a LITTLE for me. I need my body to step up and be strong enough to do carboplatin, and I need my cancer to give it up and at least some of it to DIE from it!! Otherwise I think I'm in trouble here.
  • Barbara53
    Barbara53 Member Posts: 652
    #5
    lindaprocopio said:

    NANCY: what kind of allergic reaction to the carbo?
    NANCY: what kind of allergic reaction to the carbo? I started carboplatin last Thursday and have my toes and fingers all crossed that THIS chemo drug will beat back the cancer progression that occured during my failed attempts with Taxol and with Doxil. (If carbo doesn't work I'm afraid they'll assume my cancer is now totally chemo resistant!) They will give me the skin prick allergy test before EVERY carbo infusion, so they obviously think there's a good chance I'll be allergic to it. The oncology nurse said people get increasingly allergic to it and I did the 6 carbo/taxols in late 2008/early 2009, so I already have carboplatin build up apparently. Did you discover your allergy to carbo with that pre-infusion skin-prick test, or did you have a reaction during an infusion? I just want to know what to look for.

    I've felt yukky for the past week after each meal since I got my 1st carbo infusion, and will be surprised if my RBC isn't low since I feel lightheaded with the slightest exertion. & yet I DESPARATELY want to stay on carboplatin and for SOMETHING to work even a LITTLE for me. I need my body to step up and be strong enough to do carboplatin, and I need my cancer to give it up and at least some of it to DIE from it!! Otherwise I think I'm in trouble here.

    feeling yukky is a good sign
    My mother hardly felt her last two maintenance carbos. At the oncologist the other day, this got his attention. From his demeanor and choice of words, I concluded that this was a sign that it was no longer working. Mom's scared, and we're trying to keep everything calm, so I didn't follow it up with further discussion. But I think it's a good sign if you're feeling yukky, means it's working.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #6
    lindaprocopio said:

    NANCY: what kind of allergic reaction to the carbo?
    NANCY: what kind of allergic reaction to the carbo? I started carboplatin last Thursday and have my toes and fingers all crossed that THIS chemo drug will beat back the cancer progression that occured during my failed attempts with Taxol and with Doxil. (If carbo doesn't work I'm afraid they'll assume my cancer is now totally chemo resistant!) They will give me the skin prick allergy test before EVERY carbo infusion, so they obviously think there's a good chance I'll be allergic to it. The oncology nurse said people get increasingly allergic to it and I did the 6 carbo/taxols in late 2008/early 2009, so I already have carboplatin build up apparently. Did you discover your allergy to carbo with that pre-infusion skin-prick test, or did you have a reaction during an infusion? I just want to know what to look for.

    I've felt yukky for the past week after each meal since I got my 1st carbo infusion, and will be surprised if my RBC isn't low since I feel lightheaded with the slightest exertion. & yet I DESPARATELY want to stay on carboplatin and for SOMETHING to work even a LITTLE for me. I need my body to step up and be strong enough to do carboplatin, and I need my cancer to give it up and at least some of it to DIE from it!! Otherwise I think I'm in trouble here.

    Barb: I hope your right about feeling yucky!! I remember the Carbo gave me indigestion and reflux.

    Linda: Unfortunately I had hives after my 2nd Gem/Carb infusion. That would have been my 10th carb infusion to date. I had did 8 rounds initially with Taxol. They told me after 8 doses you are higher risk. I thought it was a mild reaction. I was on a desensitized rate of infusion. I told the medical oncologist I'd be willing to try it again but she was a no go. I continued on the Gemzar one day one week, one day the next week then 2 weeks off. I was totally bummed not to be on it but was suprised that my first scan while on it showed stability. THe next scan showed VERY slight progression. That was when they decided to move me into the trial because the trial was closing. My ca125 had jumped up quite a bit also but I forget the exact number.

    Trust me Linda, I know EXACTLY how you feel. I'm getting worried myself. I don't know if this current trial medication is working because I had a 25% jump in my ca125. Also having increase in GI symptoms. I get scanned tomorrow and find out Monday. I'm hoping for stability.

    Remember that song "Need a little Christmas"? Here is an excerpt:

    For I've grown a little leaner,
    Grown a little colder,
    Grown a little sadder,
    Grown a little older,

    And I need a little angel
    Sitting on my shoulder,
    Need a little Christmas now.

    Haul out the holly;
    Well, once I taught you all to live each living day.
    But we need a little Christmas
    Right this very minute,
    Candles in the window,
    Carols at the spinet.
    Yes, we need a little Christmas
    Right this very minute.

    It hasn't snowed a single flurry,
    But Santa, dear, we're in a hurry;

    So climb down the chimney;
    Put up the brightest string of lights I've ever seen.
    Slice up the fruitcake;
    It's time we hung some tinsel on that evergreen bough.
    For we need a little music,
    Need a little laughter,
    Need a little singing
    Ringing through the rafter,
    And we need a little snappy
    "Happy ever after,"
    Need a little Christmas now.
    Need a little Christmas now.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #7
    nancy591 said:

    Barb: I hope your right about feeling yucky!! I remember the Carbo gave me indigestion and reflux.

    Linda: Unfortunately I had hives after my 2nd Gem/Carb infusion. That would have been my 10th carb infusion to date. I had did 8 rounds initially with Taxol. They told me after 8 doses you are higher risk. I thought it was a mild reaction. I was on a desensitized rate of infusion. I told the medical oncologist I'd be willing to try it again but she was a no go. I continued on the Gemzar one day one week, one day the next week then 2 weeks off. I was totally bummed not to be on it but was suprised that my first scan while on it showed stability. THe next scan showed VERY slight progression. That was when they decided to move me into the trial because the trial was closing. My ca125 had jumped up quite a bit also but I forget the exact number.

    Trust me Linda, I know EXACTLY how you feel. I'm getting worried myself. I don't know if this current trial medication is working because I had a 25% jump in my ca125. Also having increase in GI symptoms. I get scanned tomorrow and find out Monday. I'm hoping for stability.

    Remember that song "Need a little Christmas"? Here is an excerpt:

    For I've grown a little leaner,
    Grown a little colder,
    Grown a little sadder,
    Grown a little older,

    And I need a little angel
    Sitting on my shoulder,
    Need a little Christmas now.

    Haul out the holly;
    Well, once I taught you all to live each living day.
    But we need a little Christmas
    Right this very minute,
    Candles in the window,
    Carols at the spinet.
    Yes, we need a little Christmas
    Right this very minute.

    It hasn't snowed a single flurry,
    But Santa, dear, we're in a hurry;

    So climb down the chimney;
    Put up the brightest string of lights I've ever seen.
    Slice up the fruitcake;
    It's time we hung some tinsel on that evergreen bough.
    For we need a little music,
    Need a little laughter,
    Need a little singing
    Ringing through the rafter,
    And we need a little snappy
    "Happy ever after,"
    Need a little Christmas now.
    Need a little Christmas now.

    and that song made me cry....
    I guess I must REALLY need a little Christmas now; that song reduced me to tears. (((((Nancy))))

    My next carbo infusion on 12/30 will be my 8th carbo, counting the original 6 carbo/taxols. I still have a rash all over my legs and torso from the ineffective Doxil I had last in November. Maybe they won't even notice any new carbo hives! I need to stay on carbo if it does ANYTHING positive to my CA125.

    ARGH! Worrying doesn't help. Let's both stay optimistic that we're on the right tactic at last. I'll be thinking of you on Monday and waiting for you to post the GOOD NEWS!

    BTW, how long before the Doxil rash and foot discoloration go away?
  • upsofloating
    upsofloating Member Posts: 466 Member
    #8
    Linda, I have been on
    Linda, I have been on single agent Gemzar with good results, lymph nodes shrank, PET scan clean, and ca125 now @14. At first I was concerned about just single agent but my gyn-onc says he does so all the time. He is not a fan of Avastin. I'm sure each doc has own experiences with the various treatments. Do you know why he opted for Avastin over Gemzar? Either way, I'm sure you'll feel better to be getting a treatment underway.
    Thinking positive thoughts for you, Annie
  • clamryn
    clamryn Member Posts: 508
    #9
    Thank You
    Thanks to all for your input. When you get into this boat, you sure want to have all the equipment and knowledge to help you to decide what to do. I am going to ask my doctor before I start why he chose the Avastin instead of the Gemzar. And I am still going to fight the insurance company on why I cannot take both if my doctor wants me to have it. I will keep you posted on what transpires.

    Linda & Nancy I am praying for both of you. I pray that for all of us our numbers are low, low, just as low as we can go and that one day we can all meet and talk about how we got cured.

    Nancy that song makes me cry too. (I had a big melt down last night) And I had been doing so good. Today I went shopping with a friend of mine and just put the whole thing out of my brian. Heck with it.... We are going to kick this stupid beast's b**t.

    Sorry my anger is showing right now.

    Hugs to all of you
    Linda

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