another carbo reaction

Mwee
Mwee Member Posts: 1,338
edited March 2014 in Ovarian Cancer #1
I had another reaction to the carbo portion of my gemzar/carbo infusion yesterday. Despite multiple premeds and enormous quantities of steroids it took 12 hours to infuse me yesterday. I caught the reaction sooner this time because I knew what was happening.

I'm getting so very discouraged. I'm in my 13th month of chemo for this recurrance. I started with carbo/taxol, moved on to Doxil and have been on gemzar/carbo since Sept. My CA-125s hover between 60-70's and I feel like I'm never going to get a break from this endless cycle of chemo.

The really weird thing is that if I'm off chemo for an extra week or so, my numbers come back lower than when I'm able to stay on schedule. Does that happen to anyone else?
((((HUGS)))) Maria

Comments

  • clamryn
    clamryn Member Posts: 508
    Numbers
    Hi Maria,
    When I was on a break from the chemo, my numbers dropped two points. Went from 37.4 to 35. Couldn't figure that one out. I am anxious to see what the next CA125 shows since I got my first Avastin treatment yesterday. I am praying for a break for you. I am right there with you.

    ((((Hugs to you)))))

    Linda
  • nancy591
    nancy591 Member Posts: 1,027 Member
    carbo
    They continued with the carbo despite the reaction? How many carbo infusions have you had to date? We have a similar time frame. I am in my 13th month also. Doxil, Gem/Carb, Gem alone, trial and now Avastin/Cytoxan.

    Are they going to continue with the Carbo/Gem?

    GOOD LUCK!!
  • froggy1
    froggy1 Member Posts: 205
    Wheel test?
    Hi Maria,
    I am on carbo/doxil and they give me a "wheel" test(like a TB test) each time before carbo infusion to see if I react. So far, I haven't. I asked what they would do if I did and they mentioned the process you appear to be getting, more pre-meds and slower infusion.
    Do you get a "wheel" and do you know you are going to get a reaction right away? I have been holding my breath so far. To date, I have had 12 carbo infusions.(8 with series #1 and 4 with series#2)

    Ginny
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    froggy1 said:

    Wheel test?
    Hi Maria,
    I am on carbo/doxil and they give me a "wheel" test(like a TB test) each time before carbo infusion to see if I react. So far, I haven't. I asked what they would do if I did and they mentioned the process you appear to be getting, more pre-meds and slower infusion.
    Do you get a "wheel" and do you know you are going to get a reaction right away? I have been holding my breath so far. To date, I have had 12 carbo infusions.(8 with series #1 and 4 with series#2)

    Ginny

    I get my carbo fractionated: 1/3 dose every week.
    I get the wheel test like Ginny does each week before my carbo infusion and hold my breath to see if I get the rash. I did 6 carbo/taxols initially back in 2008/2009; and after 17 dense dose taxols and 3 ineffective Doxils, started on carboplatin a few months ago. My 1st full strength carbo infusion knocked my counts down so badly that I needed a platelet transfusion and was unable to get chemo the next 2 times I came in for it. So they cut my carbo to 1/3 strength and now I get it every Thursday, with 3 Neupogen shots weekly also. So I've had life-time-total 7 full-strength and two 1/3-strength carbo doses.

    I was just thinking that you might want to mention the fractionated dose like I get as an alternative to backing away from carboplatin altogether. I think of carbo as one of the POWER chemos, like taxol, that I want to keep getting is I can and if it's working at all for me.

    I've been a sissy about asking about my CA125 the past couple of draws. My CA125 dropped 60 points when I got the one full-strength carbo dose, but climbed 100 points the first week I had to delay due to low platelets. (Ignorance is bliss, I guess.) I am doing all my body can take, so if my CA125 is still going up on this fractionated dose, there's not much I can do about it until my next scheduled CT/PET at the end of February when we can talk about a change in chemos again. I have been in constant chemo since February 2010. With my oncologist, if there's GOOD news he rushes to tell me. If there's BAD news, he doesn't tell me until he has to or if I ask him directly. Tomorrow I'm going to ask.
  • srwruns
    srwruns Member Posts: 343
    Oh my and I complain about
    Oh my and I complain about my long infusion days. That is strange about the numbers bouncing around like that. My thoughts with you! Susan
  • antcat
    antcat Member Posts: 270
    Hi Maria, I, too, had been receiving Carboplatin/Gemzar and had a reaction. The first time it was kind of a mild reaction and I immediately got better after more benedryl. The oncologist I used to go to didn't want to use the carbo again, but I wanted to give it one more shot. So, when I got the next infusion, it was much worse. I felt like I couldn't breathe, I broke out with some red rash and my palms of my hands and feet got red. So, they stopped the carbo completely and just put me on Gemzar from thereafter. I was also on 2 weeks of Gemzar and a week off. I guess the Gemzar alone didn't do the trick and when I went for my PET scan after my last Gemzar the new spots of cancer came back. I waited about 3 months as I wanted to find a new oncologist and went to MSK in NYC. I was started on Doxil and used that for 3 cycles, again with no luck and am now on Avastin/Cytoxan. I also feel like I'm never going to get a break from the chemo. I was on chemo for 9 months in 2010 and am still on it. It can get very discouraging.
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    sorry to hear
    I am sorry to hear this about your reaction. I hope they can find the right chemo for you. Maybe they can infues 1/2 at a time or something. I am on carbo/taxol and so far so good ,the only thing is i get itchy a few days after tx. Keep your spirits high,you are an amazing lady and even though we have never met I think of you as a dear friend....val
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    sorry to hear
    I am sorry to hear this about your reaction. I hope they can find the right chemo for you. Maybe they can infues 1/2 at a time or something. I am on carbo/taxol and so far so good ,the only thing is i get itchy a few days after tx. Keep your spirits high,you are an amazing lady and even though we have never met I think of you as a dear friend....val