3 hour Taxol infusion

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MsLade
MsLade Member Posts: 4

Wondering if anyone has had this and if you think it helped? I expressed my extreme concerns about neuropathy to my MO and he scheduled me for a 3 hour infusion instead of the normal 1 hour to help reduce the risk. Supposedly there is some research backing this up. I had been planning to ice hands/feet, but now I'm not so sure that it's safe to do for so long, or if I could even tolerate it!

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  • Kamboka
    Kamboka Member Posts: 975
    edited September 2019

    MsLade,

    I'm on the dose dense Taxol which means I am supposed to get the three hour infusion every two weeks. I had one infusion already. The infusion was not bad and it goes fast--especially if you are busy icing. I do have to disclose that I've not had good luck with the taxanes. Due to a few neuropathies prior to my diagnosis, I tried Taxotere in May--as it has a slightly reduced chance of neuropathies. I had a reaction and decided to end chemo. My MO convinced me to try Taxol with icing. My first infusion was three weeks ago (normally it's every two weeks but my WBCs were too low to do it last week). I did constant icing for 15 minutes before and after the three hours. Still I got severe bone and muscle pain for four days and bad neuropathy in my feet. I opted out of the weekly doses as I wanted it to be done with sooner. Not sure if that was the right decison but it is what it is.

    In sharing this story, I don't want to scare you. I would recommend that you have a discussion with your MO about the pros and cons of weekly versus every two weeks. You can always change if things are not working out.

    Good luck!

  • MsLade
    MsLade Member Posts: 4
    edited September 2019

    Thanks so much for your reply, Kamboka. I'm pretty nervous, but we'll see how it goes. Are you going to continue?

    How did you manage the icing for so long? It would take a ton of gel packs to last 3 1/2 hours. Did you just use regular ice and switch it out?

  • ChiCat25
    ChiCat25 Member Posts: 10
    edited September 2019

    Hi~I will be starting the dose dense treatments on September 12th and am very nervous as well. I’m willing to try this since I still need to have surgery & hopefully before the end of the year. MsLade, I do hope that’s true that there’s less chance for neuropathy. Let me know if you find a link to this research. I bought the CryoMAX brand of ice packs, they supposedly last for 12 hours. It’s my intentions to ice for 15 minutes before, and for as long as I can stand the cold. I will take them off for 15-20 minutes as needed and then reapply. When is your 1st treatment


  • Kamboka
    Kamboka Member Posts: 975
    edited September 2019

    Everybody's experience is different and I hope that you have an easy time with taxol. Most doctors say taxol is much easier than AC. I guess I was just the outlier.

    I started out with Taxotere and my brother flew into town to help me with the icing. Taxotere is only a one hour infusion. I had bought the Natracure socks. They felt great because it had pockets on top for nails and the bottom for soles. Unfortunately, the packs only stay cold between 15-30 minutes. I bought extra packs and brought a cooler. For my hands, I only had some large frozen gel backs that lasted an hour or so. I wrapped my hands in a hand towel to keep them cold. My brother fed me ice chips--as this is supposed to help with mouth sores. My next infusion was with taxol that takes three hours. Not only did I have the same packs but I had to add ice to the cooler since my infusion center does not have an ice machine. The nurses did keep my packs and ice in the freezer. This time my sister flew in to help me with the process. About half way through, my gel packs could not refreeze quick enough and I ran out of ice. I sent my sister to the store across from the infusion center to buy ice. I was concerned that this would happen so I brought my foot soaking tub with me as well. We ended up filling the tub with a little ice and water and I just put my feet directly in the tub. It was actually easier as I could just lift my feet out if it got too cold. I had to be careful though as I had some neuropathy already and you don't feel the cold as you normally would. Because I was still get worsening neuropathy, my last infusion on Wednesday, I decided to forgo the icing. Besides, I didn't have anyone to help me this time and I felt like I would stress myself out trying to do it along, I did bring ice chips for the mouth but wasn't a religious about sucking them as I usually am. We'll see how I do with the mouth sores. :(

    I have completed three out of the four taxane treatments. I've decided to stop there. I read somewhere that if you can get 85% of your chemo in, that's almost like 100%. I really worry about long term nerve damage since I'm single, older and need to provide for myself. I've told my doctor that it's "quality over quantity". She still thinks I'll change my mind, but I've been trying to end chemo for months and she talks me back into it. She is persistent. I've reconciled to the fact that nothing is promised and I might get cancer again. If I do, I'll deal with it them. Until then, it's time for radiation.



  • MsLade
    MsLade Member Posts: 4
    edited September 2019

    ChiCat25- Thanks for the tip on the Cryo-Max. That's just what I was looking for. I just ran out and bought some for my infusion tomorrow morning.

    Kamboka- Thanks for sharing your experience. It certainly does seem that everybody reacts differently. I am certainly hoping for the best - my career (and all of my hobbies) relies on my hands, so it's pretty scaring putting them at risk.

  • Kamboka
    Kamboka Member Posts: 975
    edited September 2019

    MsLade: I know it is scary for you if your hands are your "passion and your bread and butter". My hands are doing better than my feet. I am hoping and praying that you have limited to no effects to your hands.

  • ChiCat25
    ChiCat25 Member Posts: 10
    edited September 2019

    MsLade~Hoping and praying for you that your treatment went well with minimal & manageable side effects. Another thing I read, and my doctor confirmed, is that taking Vitamin B helps prevent neuropathy. I am taking Garden of Life Raw B Complex. It was a little pricier than most vitamins, but they are organic and all natural. Anything is worth a shot!

  • HolgaGirl
    HolgaGirl Member Posts: 7
    edited September 2019

    Hi MsLade,

    I am through three of four three-hour dose-dense Taxol treatments. During the first treatment, I didn't ice and got a bit of neuropathy in my thumb, index and middle fingers on both hands; nothing in the toes. The fingers were tingly and a bit numb, but it only lasted about 48 hours. I've had some discoloration in both middle fingernails but it's not noticeable to anyone but me.

    For the last two treatments, I have used gel packs on my hands only; nothing special, we had them already to ice my creaky knee and my husband's shinbone (old break). They last about an hour each, so we brought a cooler with additional packs. I wear thin nylon gloves because I don't want to run the risk of frostbite, and it's just more comfortable. I take my hands in and out to drink and eat.

    I've had ZERO recurrence of the neuropathy. I should say I get acupuncture regularly, and I asked her to specifically address hand neuropathy. So I don't know exactly what to attribute my lack of neuropathy to, but whatever, I'll take it.

    Good luck!

  • LoveFlorida
    LoveFlorida Member Posts: 34
    edited September 2019

    MsLade

    I get weekly Taxol. Just received my 2/12. I purchased 2 sets of Naturcare for feet. 1 set for my hands and 1 set for feet. Cancer center provides me 3 tubs and all the ice I want. One tub for my feet and 2 for each hand. 15 minutes before. 1 hour for treatment and 15 minutes longer. I will say it is really rough. Sitting in all that ice. The last 20 minutes is really rough. Soon as I’m done my husbands rubs the circulation back into my feet so I can go to bathroom.No signs of neuropathy. I play pickleball everyday and plan to get back to it by January 1.

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited September 2019

    This might be a little late but I used the ice socks from amazon and had extra freezer packs that I just switched out when they got warm. The gel packs don't really seem that cold to me and were easy enough to tolerate. I used bags of ice or held frozen water bottles during the infusion as well. My little treat was to bring an icee or frozen coke or slurpee to my treatment. It tasted really good at the time and kept my mouth cool. I did not develop neuropathy at all but my feet did peel at the end of the AC portion. Taxol seemed much easier at least for me and my hair started growing back about 5 weeks into the taxol. It always seemed silly for me to ask for a heated blanket at the same time that I was icing my hands and feet but it helped make it more comfortable. Good luck with your treatments ladies

  • MsLade
    MsLade Member Posts: 4
    edited September 2019

    Thanks all for sharing your experiences! I did get the long-lasting CryoMax ice packs and they worked out great. They stayed cold for the full 3 1/2 hours and I just removed hands/feet once in while if it got uncomfortable. The benadryl kept me sleeping through most of it, anyway. Even so, I very quickly developed lighting bolt-like nerve pain in the arches of my feet. It was like being tortured 'round the clock. It has subsided a little 10 days later, but has renewed my fears. Also ended up with really severe abdominal pain and knee pain that lasted several days, plus nausea, which I hear is unusual. I just have all the luck :/ . Hoping round 2 this Friday isn't too bad!

  • Kamboka
    Kamboka Member Posts: 975
    edited September 2019

    MsLade: Sorry to hear that you had the reaction. I hope it goes away and you have better luck with the next infusion. Perhaps they can do a dose reduction with the next infusion.

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