Question about infusions of taxol/carbo

Sharring
Sharring Member Posts: 24
in Uterine/Endometrial Cancer #1

i recently had my 3rd of 6 rounds of chemo for IIIc uterine carcinosarcoma. I had no side effects with the first two.  I was concerned during the 3rd because my iv seemed to drip faster and run shorter than the normal 3 hrs.  When I asked the nurse if she speeded up the taxol, she said no...but later lied about the start time.  My neighbors taxol ran 3 hrs and 40 mins with the nurse holding up the bag and saying...I know..it was only suppose to be x amt ml.   within hrs of finishing that session I had horrible side effects...severe headache, trouble breathing, abdominal pain etc.  Those went away the next day but then, for the first time, I exp the traditional side effects...bone pain, neuropathy etc.  The recorded start and stop times between the two drugs was two minutes.  Now I know it was considerably longer but even if not, that seems hardly enough time to change bags / flush lines etc..  In the end I was told that the bags can vary depending on how the pharmacy dilutes.  But then I read that there are very definite manufacturer guidelines for dilution ratios.  Am I going crazy?

Also, my ca125 results were late that day.  They never drew blood so does that mean they used my blood from labs drawn two days earlier off site?

And then i recd a call the next day to return to infusion because they forgot to give me my nuelasta pod.  I had to go back for an injection.

This really scared me. I am even wondering if they knew who I was that day!  My diagnosis prognosis is very poor and I already feel my current treatment plan may not be worth the sacrifices for such a small gain.  And now I’m to believe the rate / amt / dose of poison they are pumping into me doesn’t really matter???  

Any one else feel a little shaky about infusions.

 

Comments

  • Violet123
    Violet123 Member Posts: 28 Member
    #2
    Chemo

    Hi Sharing,

    I am on Carboplatin and Taxol and have had 3 of 6 rounds.  Tomorrow is my 4th round.   So far I have been able to have someone, family or friend sit with me during my chemo infusions.   At my center, they use the blood draw from 2 days prior to chemo schedule to ensure the blood levels are at a safe level to proceed with chemo.  From what i understand, our bodies can respond to each round of chemo differently.  After my 3rd round i had some dizziness when i bent over to get something out of a lower cabinet which is a new symptom for me.  Day 2-6 After chemo my joints in my legs are sore and my muscles cramp. 

    On my first chemo visit they had to stop the infusion for 10 to 20 minutes since it appeared I was having a reaction, then they monitored me closely for the next 20-30 min.  The nurse explained that that happens sometimes.  She said the day before she had a patient that the 3 hr taxol took 5 hrs to infuse as they had to slow the rate down for the patient to handle the infusion.  

    Also,  the pre infusion medications can make one drowsy and thinking cloudy.  That is why having a friend there can help clarify any questions you have.  Hope this is helpful. 

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    #3
    Had my first chemo today with

    Had my first chemo today with taxol and carbo. I only lasted 15 minutes and as soon as they upped it for the first time I had major chest squeezing and severe hip and back pain. My blood pressure shot up and my face flushed, which for me is usually first sign for allergic reaction. They immediately stopped infusion and gave me steroids and benadryl. They waited an hour and tried again. I lasted 20 minutes and my face flushed and slight chest squeezing. I ended up just getting carbo today. They will try something else the next time. It's frustrating and a little scary. They did do a blood test so they can see what in the toxol I'm allergic to do they can choose a drug.  I find out tomorrow or Friday what doctors are trying next. 

    There are other alternatives. Hope it goes better for you the next time.

  • MAbound
    MAbound Member Posts: 1,175 Member
    #4
    Setting?

    Are you perhaps getting your infusions in a hospital? In that kind of setting you sometimes get nurses who are "pulled" from other floors to cover staffing shortages and they can be like fish out of water if working with chemo patients is outside their realm of expertise. If you are getting your chemo in a hospital, be sure to ask if your nurse usually works in that department or is from elsewhere. I don't know if you'd be able to ask for a different nurse, but it wouldn't hurt to try given the experience you had. 

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #5
    barnyardgal said:

    Had my first chemo today with

    Had my first chemo today with taxol and carbo. I only lasted 15 minutes and as soon as they upped it for the first time I had major chest squeezing and severe hip and back pain. My blood pressure shot up and my face flushed, which for me is usually first sign for allergic reaction. They immediately stopped infusion and gave me steroids and benadryl. They waited an hour and tried again. I lasted 20 minutes and my face flushed and slight chest squeezing. I ended up just getting carbo today. They will try something else the next time. It's frustrating and a little scary. They did do a blood test so they can see what in the toxol I'm allergic to do they can choose a drug.  I find out tomorrow or Friday what doctors are trying next. 

    There are other alternatives. Hope it goes better for you the next time.

    I had a reaction to Taxol within seconds of it being infused.  They changed me to Gemzar and Carbo.   The only difference was I had to go every two weeks instead of once a month.  That seemed to work for me.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #6
    Taxol reaction

    I had a similar reaction with my first taxol infusion. The doc dosed me up with steroids and I got my infusion the next day and every week after that without further problems. We were able to gradually reduce the steroids every week. God bless my infusion nurses. They were angels on earth. 

  • bluesmama
    bluesmama Member Posts: 125 Member
    edited November 2017 #7
    Chemo is cumulative

    Hey there. I had 4 cycles of carbo/taxol. The first cycle was my easiest. I barely noticed the side effects. But with each subsequent cycle, the side effects were predictable for the most part but got worse. My first cycle included the steroid high on day 1, then a gradual steroid crash, upset stomach, bone pain by day 2 and wooziness and fatigue. I felt normal around day 5. Cycle 2, same side effects, but it took 7 days to feel well again. Cycle 3 took about 8 days to feel well. And on cycle 4, it took about 11 days to feel well again.

    The actual infusion duration, however, shouldn't change dramatically unless you have problems with immediate side effects and/or your veins are giving out on you. They might slow it down a bit to help you get through it. 

    For your next infusion, do express your concerns. I had some amazing chemo nurses and a few mediocre ones. I never felt guilty about speaking up because it's my body and I know it best. If something doesn't seem right, demand an explanation. You deserve as much.

  • Sharring
    Sharring Member Posts: 24
    edited November 2017 #8
    Thanks everyone...

    Thanks everyone.  They didn’t have to slow me down, it just finished prob 20 mins short. The side effects didn’t start till i was leaving. It does sound like maybe a slight allergy.  

    Yes MAbound my infusions are in the hospital.  And they are often busy and distracted. It’s really frustrating. That’s what confused me about the CA125 test also.  They say that has to be done at the hospital for consistency but didn’t draw blood that day.  The only draw I had was my normal two day beforehand at an off site affiliated location.  Just doesn’t make sense.

    So sorry barnyardgal.  There isn’t even an agreed upon recommended treatment plan for my cancer so I’m not really sure What my options would be if they had to change it up.  I hope they find something soon that will work better for you.

    cheese n blues...im finding the same experience. Im sure I’ve had side effects but im fortunate that I have a pretty high tolerance. Im nervous because I plan on those cyclical days. I still have to work full time unfortunately, so I hope for some consistency each time.

    violet123 I’m so glad you have a support team in place.  Sadly I lost my husband to a heart attack and have no family in my area.  I’m also too young for disability or retirement so I’m pushing through as best I can.  While it would be helpful to have another present at infusions, I find it peaceful and less stressful if I dont have to entertain lol.  It does upset me that concerns are sometimes brushed off assuming the patient is drugged up.  I haven’t yet experienced any type of fuzziness or fatigue during treatments so feel I’m fully competent and capable of my surroundings. 

    I have already decided to refuse external and internal radiation so I’m just wondering if I should do the same with the 3 remaining chemo sessions.  Feels like I’m a lemming being pushed forward every time I have a concern uggg. 

    Thanks again for all you help and support everyone!

    Susan

     

     

     

     

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #9
    I felt like they didn't

    I felt like they didn't always listen to me sometimes either.  When my port was so infected and couldn't be used,  I told the nurse my veins are very hard to access and she should use the one in the crook of my right arm.  She just poo poo me. After three tries with my arms looking like a rotten banana she had to get another nurse. I AGAIN said I've had up to a dozen tries and they had to get a surgeon to insert it when i had complications from gall bladder surgery. She said I should have spoke up to the previous nurse.  I told her I did...more than once!! She asked me to identify which nurse I had told. I said it was the same one who came to get you.  I know she wrote it down and I said I never wanted that nurse again.  She inserted the IV the first time exactly where I told her.  You have to be your own advocate, that's for sure. 

    Love, 

    Eldri 

  • Sharring
    Sharring Member Posts: 24
    edited November 2017 #10
    This is what I’m saying too Eldri

    We should not have the additional worry of being Drs and nurses while trying to find strength each day just to survive! I say it’s a sad day when I would rather take a chance on cancer getting me again than die in my infusion clinic!  I actually gave up on my current treatment team / plan but have agreed to get a second opinion at Duke Cancer center which is in my area as well.  Maybe taking a step back and regrouping will help me to regain some confidence.  I have indeed learned the hard way we must all be our own advocates too sadly.

    Wishing you well...

    Susan

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