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Weekly Taxol group

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Comments

  • claire1973
    claire1973 Member Posts: 84
    edited June 2021

    Hey-

    My weekly taxol included a complete blood count to start as well. The infusion didn't begin until the results were in and read by the doctor. I hovered right above the 1.0 mark for my final 6 treatments but never dropped below. You might not. Hopefully you will not. Hugs to everyone still going through this part of the treatment. Ugh....so hard and taxing on the body and brain.

    xoxo

    Claire


  • aram
    aram Member Posts: 320
    edited June 2021

    Thanks moth for the info. I will call and ask tomorrow. I found a link to Ontario protocol before and for them the cutoff is 1.5x10^9. That is what made me question why I don't have weekly blood tests. Now I see BC is kind of similar. Maybe I am scaring myself a little bit but I have already been hospitalized once during AC and I don't want that to happen again if possible.

  • Amary2021
    Amary2021 Member Posts: 37
    edited June 2021

    Hello everyone, I am new to the site. I completed 4 x AC chemo cycles last week and due to start my first weekly taxol for 12 weeks next week.

    Could I ask you how you are finding taxol? So glad I survived AC! Did anyone feel nauseous during and after the infusions?

    I heard about the neuropathy and the cumulative fatigue. I intend to bring ice bags to my first taxol and beyond.

  • aram
    aram Member Posts: 320
    edited June 2021

    Hi Amary2021. I had 4 ACs (3 weeks cycle) and so far have finished 4 weekly Taxol. AC was really harsh on me, I was super nauseous and in bed for about a week after infusion. But weekly Taxol has been ok so far. The main side effect is that I can't sleep the night of infusion due to IV steroids. I don't have any nausea with Taxol, and so far no neuropathy (I do ice my hands and feet). I do have fatigue as well but it is not preventing me from doing my job.

    I hope your Taxol goes well.

  • aram
    aram Member Posts: 320
    edited June 2021

    hi claire1973, sorry I missed your post last night. That is really encouraging that yours didn't drop further. I have gone from 1.99 to 1.08 in 3 weeks. I asked for weekly blood tests just to be sure but I hope mine doesn't go further down as well. I still have 8 infusions left.

  • Amary2021
    Amary2021 Member Posts: 37
    edited June 2021

    Hi Aram,

    Thanks for sharing your experience. Yes, AC knocked me out too. I'm glad that your weekly taxol is going well and that you are able to continue working. I prepared ice bags and hope they help me too for neuropathy. Good to know that you do not have nausea with taxol.

    All the best with the rest of your treatments!


  • txlorelei
    txlorelei Member Posts: 69
    edited June 2021

    I’m now halfway through Taxol - 6/12 treatments.

    I’ve been icing my hands and feet, but I’ve still had some persistent tingling in my fingertips. This week my MO prescribed Gabapentin and reduced the Taxol dose to hopefully combat that side effect.

    The Benadryl and Ativan given before the Friday morning treatment make me sleepy so I always take a nap right after I get home. My husband drives me. But last evening I felt well enough to drive myself to my knitting club.

    I’ll admit I’m dreading AC.

  • pchyen
    pchyen Member Posts: 96
    edited June 2021

    Since there is no bi-weekly Taxol group I will post here. My wife Nicole got her first of bi weekly 4 dose dense Taxol and Herceptin+Perjeta.

    First Taxol one went well, no allergic reactions. She is not able to do icing as her hands and feet are very sensitive to hot and cold, resulted from AC treatment (don’t think it’s neuropathy).

  • claire1973
    claire1973 Member Posts: 84
    edited June 2021

    hi pohyen

    I didn’t ice for the same reason. Does your wife have access to acupuncture? I started acupuncture for neuropathy at the first sign of tingles and was able to avoid any additional tingling. It did continue but was very minor until about 6 weeks after last infusion.

  • pchyen
    pchyen Member Posts: 96
    edited June 2021

    Hi claire1973, wife does have access to acupuncture. Will mention it to her and get her to try. Thank you!!

  • HopeHeal
    HopeHeal Member Posts: 137
    edited June 2021

    Aram, like Moth my blood is tested before every treatment, in this case every week. I think it's hard to know where your blood is otherwise as you said.

  • HopeHeal
    HopeHeal Member Posts: 137
    edited June 2021

    Hi Amary2021, I completed AC and am nearing the middle of 12 weekly Taxols. I think AC is much harder on the GI system than Taxol. I had nausea only when I ate raw vegetables which I stopped but also developed intermittent abdominal pains which required me to go on a low fiber diet for the rest of the duration. My MO said Taxol doesn't really cause nausea which I found to be true, but it does make me tired and causes some muscle pain. I am icing hands and feet as well. The pre-med Benadryl made me too tired to drive home so they are switching me to a less drowsy-inducing drug like Zyrtek or Claritin. Welcome to the Taxol Club and I hope it goes well for you.

  • claire1973
    claire1973 Member Posts: 84
    edited June 2021

    Hi all,

    Regarding nausea with Taxol. I thought i had nausea…I explained the symptoms to MO. It turns out I had acid indigestion. She prescribed Prilosec which helped a lot.

    Thinking of you all this week.

    Claire

  • Amary2021
    Amary2021 Member Posts: 37
    edited June 2021

    Hi HopeHeal,

    Thank you for the input, appreciate it. Wish you all the best with the remainder of your weekly taxol treatments.

    Hi all,

    My thoughts are with you.

    Cheers,



  • aram
    aram Member Posts: 320
    edited June 2021

    I just finished my fifth Taxol infusion. The neutrophils were at 1.7, so they went up from last week (1.08). I was surprised by the increase without any shots.

  • Amary2021
    Amary2021 Member Posts: 37
    edited July 2021

    Hi Claire1973,

    Prilosec seems to be like Gordex, which I also got prescribed, but to take only as needed. Good that it helped you.


  • HopeHeal
    HopeHeal Member Posts: 137
    edited July 2021

    That's great news about your WBC, Aram. Perhaps your body is adjusting to the infusions.

  • aram
    aram Member Posts: 320
    edited July 2021

    Thank you HopeHeal. You have your next infusion tomorrow? I hope everything is going smoothly with yours.

  • Amary2021
    Amary2021 Member Posts: 37
    edited July 2021

    Hi TXLorelei,

    Wow you're almost there with Taxol, well done!

    You mentioned you are about to do AC treatments? I guess I started with AC first x 4 sessions before my taxol.


  • Lizard123
    Lizard123 Member Posts: 17
    edited July 2021

    I just completed my 6th treatment. I am also taking Pecid intravenously. It works well. I have my 7th on Tuesday. Overall not too bad

  • aram
    aram Member Posts: 320
    edited July 2021

    Lizard123, is it only Pepcid you are taking? I am taking Pepcid with Dexamethason and Benadryl. My infusion is on Wednesday and I have steroid crash every Saturday. I am wondering if I really need Dexamethason at this point after no allergic reaction to Taxol for the past 5 infusions.

  • Lizard123
    Lizard123 Member Posts: 17
    edited July 2021

    I take decadron and Benadryl also. I know what you mean about the steroid crash. I am pretty good Wednesday(day after) but by Thursday, I am more tired. I really do not like the weekly treatments. I find there in no time to recover. While I still found the AC treatment harder, this is not easy either. I find my tongue a bit numb. I also do grastophil for white blood cells. 1 injection per day for 3 days starting on Wednesday. It makes my jaw sore.

    Do most people complete all 12 treatments?

  • txlorelei
    txlorelei Member Posts: 69
    edited July 2021

    7 down, 5 to go. Then comes AC x 4.

    My weirdest side effect is the feeling of air bubbles trapped in my throat, like I need to burp but can’t. Could this be related to heartburn/ acid reflux? It goes away 2-3 days after my treatment.

  • claire1973
    claire1973 Member Posts: 84
    edited July 2021

    that sounds like acid reflux to me. I described a similar thing to my MO thinking it was nausea, and she said it sounded more like reflux and prescribed daily Prilosec which worked.

    Hoping that helps

  • HopeHeal
    HopeHeal Member Posts: 137
    edited July 2021

    Aram, my MO said I could stop the steroids early in the treatment if I didn't have a reaction so we stopped it. However, my blood sugar is still showing as slightly high (the steroids push it up), even though we stopped the steroids weeks ago so that worries me. I am about halfway into my treatment and get them before the weekends so basically my weekends are somewhat non-productive.

    TXLorelei I get that same weird air bubble feeling in my throat in the first few days after Taxol even though they premedicate with Pepcid. It's mild so it doesn't bother me much, it likely would be worse without the premeds.

  • swimgal
    swimgal Member Posts: 60
    edited July 2021

    Hello. New to site and group. Will be starting chemo in two or three weeks with Taxol/Herceptin once a week for 12 weeks followed by radiation (a month break between the two). My plan is to use a cool cap during chemo. I would greatly appreciate any tips on preparing for the chemo. Thank you in advance.

    Swimgal

  • aram
    aram Member Posts: 320
    edited July 2021

    Hi swimgal, I don't do cold caping but I do ice my hands and feet to possibly prevent neuropathy. I am not sure how often you get Herceptin. For me it is every 3 weeks. The weeks I get Kanjinti(Herceptin) and Perjeta, I am at the infusion site for 6 to 7 hours which I bring snacks, and a book. On the Taxol only days, it takes about 2 hours and I usually only have my phone as during Taxol (1 hour), I am icing my hands and can't hold anything.

    I drink between 2 to 3 litres liquids(water, tisane, melon juice) on the day before infusion, the infusion day and 2 days after the infusion.

    I also need to take one or two Imodium the day after infusion. Some people have the opposite issue because of steroids so you might want to have both Imodium and laxatives handy.

    Good luck with your first infusion

  • swimgal
    swimgal Member Posts: 60
    edited July 2021

    Thank you, Aram. I haven't had my chemo education session yet, so I'm not sure how often I will get Taxol and/or Herceptin. I plan on doing the cold gloves and socks also. Can you tell me if you are able to use the bathroom during your treatments? I understand how important the water intake will be, but there's no way I can go 6 or 7 hours without using the bathroom. I appreciate your input on this.

  • aram
    aram Member Posts: 320
    edited July 2021

    swimgal, yes, I use the bathroom during my long infusions. It is not the most convenient but it can be done :)

  • mochipie
    mochipie Member Posts: 45
    edited July 2021

    Since some of you are new, here is a shopping list for weekly Taxol. Note that I only had this chemo, so if you have AC prior to Taxol, I don't know how the list might change. I iced hands and feet for each infusion with ice and bags provided by my infusion center. I did not cold cap and it was the right choice for me.

    • Journal or blank book for noting symptoms, observations during infusions, etc.
    • Claritin
    • Immodium
    • GasX
    • Pepcid
    • Colace
    • Ayr nasal saline gel
    • Nasal saline spray
    • Humidifier for sleep
    • Aquaphor
    • OPI Nail Envy polish
    • Dry mouth mouthwash
    • Butt wipes for diarrhea
    • 32 ounce water bottle
    • Bottle for pre-mixing saline mouth rinse
    My biggest side effects were constipation, which was kept in check via a daily Colace; dehydration, which 96 oz of water daily helped; mouth sores, staved off by the saline rinse after every meal; nasal sores, which were only slightly helped by sleeping next to a humidifier and using the nasal gel and saline spray.