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Weekly Taxol group

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Comments

  • vlh
    vlh Member Posts: 773
    edited July 2017

    GlasgowGirl, I had to make a number of assumptions since I don't know your age or some of the specifics of your y, but this site suggests that discontinuing your chemo prematurely is unlikely to have a huge impact on your outcome:

    http://www.predict.nhs.uk/predict_v2.0.html

    One wonders about why 12 doses were used in the initial studies. I recently ran across an article related to some other cancer (colon? lung?) where a study showed no difference in outcome when the number of infusions was reduced markedly from the prior norm and, of course, radiation oncologists have been studying the effects of larger doses, but for 15 - 20 sessions instead of 30 for many patients.

    Hhuey, I hope your doctor is receptive to the Benedryl alternative, but will note that slowing the infusion rate helped me a lot.

    Lyn


  • GlasgowGirl99
    GlasgowGirl99 Member Posts: 44
    edited July 2017
    VLH, pvsue - Thank you for your replies. My Pico dressing was removed on Tuesday as wound had healed - but only just. The BCN and my oncologist both agree continuing with Taxol would only cause the wound to open again. And if I'm honest that's what I've thought for a while. Just didn't want to face up to stopping chemo. Since diagnosis I've been like a nodding dog where treatment is concerned. I'll take everything offered to me!! The last 2 days have been pretty stressful. One minute I'm so positive, the next I decide I've made a terrible mistake and will ring oncologist and say I'll try once more, then I'm telling myself to pull myself together, stop being such a wuss and move on!! But this time will pass and at the moment I'm sure I've made the right decision. I've 5 Taxol cycles under my belt, my tumor was small (1.2cm), it was caught very early and my surgeon was confident all of it was removed with no node involvement.

    This forum has been such a godsend to me during this time. I really hope all of you on here know how much your comments, replies and encouragement have meant to me and, I hope, continue to do so!

    Sending love and ((hugs)) from a rainy Donegal, Ireland 💕💕☺️☺️
  • Taco1946
    Taco1946 Member Posts: 630
    edited July 2017

    GlascowGirl - I know exactly what you mean by telling yourself "yes/no" every few minutes. I stopped Taxol after 8 infusions because my neuropathy got so painful. My doctor "casually" mentioned that I could quit as I was walking out of that appointment but then I the office was closed for a week (which gave me extra time to stew). I really was miserable but wanted to do what I could. I took my DH for the 9th visit and MO was almost "flippant" (DH's words) about stopping. Said she wouldn't have wanted me to stop at one or two but was fine with 8. So I did. Interesting article from UK. Clearly some of this is an art rather than a science. I'm obviously not a long term study but I just "passed" my third echo and follow-up mammogram. And I feel I'm communicating better with MO. Still have 6 months of herceptin and who knows how long for the AI's but moving forward. Whatever you decide, don't look back. We would drive ourselves crazy if we always second guessed ourselves.

  • Taco1946
    Taco1946 Member Posts: 630
    edited July 2017
  • salasila
    salasila Member Posts: 22
    edited July 2017

    Hello Happy I have been lurking here since I was told that I would be on the weekly Taxol regimen. Will be having my echo test tomorrow and, if all goes well, start #1 treatment on either 8/3 or 8/10. Feeling nervous but being here have helped. I've taken notes and tried to be as prepared (wig, dark nail polish, sleeping cap, etc.).

    Question for those who continued to work through treatment: how has it been? I have a desk job in Finance - it can get stressful at the end/beginning of the month when we close and reports are due - but otherwise my job is fairly calm. Also, for those that wear wigs to work - how has it been to wear it for 8-9hrs straight everyday?

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited August 2017

    sitting in the infusion chair waiting for Taxol #10. White blood counts continue to improve! 6.6 today.

    Port worked like it should. So no gymnastics to get a blood return.


  • ca_survivor
    ca_survivor Member Posts: 1
    edited August 2017

    Hi People,

    Have been following this blog since my Breast cancer treatment began in Jan 2017. Ive had 4x rounds of EC (21 days) and 7 rounds of weekly Paclitaxol with Herceptin. However my journey through this was not so smooth. After my 4 rounds of EC and 3 rounds of weekly taxol, I had a severe infection and was hospitalized for nearly 20 days. Due to this I had a 2 month break and then had 4 more rounds of taxol post recovery. My Onco has told to move on radiation therapy while continuing Herceptin every 21 days.

    Please suggest based on your experience - would discontinuing taxol after 7 rounds cause any increase in chance of re-occurrence ?

    I am a Stage 3A with triple positive Breast cancer.

    Look forward to your replies on this.


  • bji
    bji Member Posts: 116
    edited August 2017

    in the chair for taxol #10!

  • bji
    bji Member Posts: 116
    edited August 2017

    #10 Taxol/herceptin done, only 2 left. Infusion uneventful, as usual. I had my 20 month old twin grandkids visiting last week, grandson had runny snotty nose the whole week. Tried to be careful, extra handwashing, Sunday had a little sore throat, more stuffy than usual. My temp was 99.5 checked in my ear, 97.7 orally. Also have developed several red scaly patches on tops and side of my feel. Nurse had NP come look, thinking it might be from Taxol, took some pics and went to consult with MO. They were considering not doing infusion today if from Taxol. Consensus was a fungal infection, probably not from Taxol. Last week I did not go in the lake, go barefoot outside, so not sure where I got it. Anyway prescription cream to put on it for 2 weeks, see MO again next week. I can see the end and really want to finish on time. Was more tired last week, but am blaming that on the grandkids. So glad to have the time with them, but boy it wears you out!

    DodgersGirl - Going to be up tonight?

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited August 2017

    BJI - I am going to head to bed like a normal work night and see if I can get a couple of hours sleep 😇 The last Taxol I just stayed up all night.

    The Benadryl in pre-meds gives me restless leg syndrome and that interferes with trying to sleep.

    I am hoping that I can get #11 and #12 given on time, too I have a mammogram and U/S scheduled for Aug 14 to show how much of the cancer was killed from chemo. Hoping for great results.

    Best of luck with the foot fungus. My newest SE is painful nails (3-4) but so far they aren't discolored and I hope they are not lifting. I keep apply OPI products and coconut oil. It's a race to see if I make it to 12 before having nail lifting.

    #10--- can you believe we only have 2 more sessions to go? We have been on chemo now for 18 weeks. We can do this!!

  • bji
    bji Member Posts: 116
    edited August 2017

    DodgersGirl - I have been on chemo of 10 weeks, Taxol/herceptin is the only thing I've been on, had lumpectomy back in April. I see MO next week, that's my next question, think she said October for recheck mammo and us. Also another echo think end of August. My eyes have been extremely dry lately, using lots of drops, and I only have 1 more pair of contacts before I need to reorder. Was due for exam in July, but MO said wait to check because eye changes should clear up 3-4 months after finishing. Optical won't reorder contacts without exam, so thinking MO is going to have to give me some kind of note or order to get by til then. It seems its always something. Agree, almost done, I think it has gone by very fast. Another 9 months of herceptin. Thinking I might get some sleep tonight, don't seem as wide awake as I have been. Have to take my granddaughter tomorrow for sports physical and dentist appt. Good luck tonight.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited August 2017

    BJI. - tried to fall asleep for over an hour. No such luck 😞 So go up and "went" to work.

    Hope your MO had a solution for your contacts re-order. Dry eyes are no fun.


  • T-Sue
    T-Sue Member Posts: 207
    edited August 2017

    BJI and DodgersGirl, I am right behind you. Had my weekly Taxol/Herceptin #9 this past Monday. Looking at three more. Phew! I have trouble sleeping on my chemo day also. I stay up as late as I can stand and the take an Ativan (Lorazepam) which knocks me out half the time. Otherwise I'm doing laundry and dishes in the wee hours. Hope you get better sleep tonight!

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited August 2017

    T-Sue. .... I was able to sleep for 3 hours this morning. I don't have anything to take to help me sleep. Well, I did buy melatonin but haven't tried it yet.

    Congrats on finishing #9!! Feels good to be so close to 12, doesn't it!!

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited August 2017

    tonyaberryman- good luck tomorrow.

    Are you still having nail pain?? I am now. Hoping to get thru the next 2 infusions with nail lifting or any infections under the nails.


  • hhuey
    hhuey Member Posts: 121
    edited August 2017

    I am going for my second THP tomorrow. They said on my first one that they gave me a loading does and that each dose after will be less. Anyway the first two days after I felt fine ..a little tired but nothing serious. The 3rd and 4th day muscle and joint pain along with feeling of malaise.. and weird shooting pains here and there..after that for the last 2 or 3 days have had stomach issues..not diarrhea but looser stools and just feeling icky and just our of sort of weak and unbalanced. Did anyone else have. Bigger dose to start and will the side effects maybe be less now that I will have a smaller dose for the next 11 weeks?

  • tonyaberryman
    tonyaberryman Member Posts: 37
    edited August 2017

    Dodgersgirl, I'm so excited for chemo #9!!!!!! Can't believe the chemo part is almost over!!! My nails are a little dark, but I keep dark nail polish on them. They are really sore in the am, but not that bad.

    My hair is growing back and coming back white as snow, my hands and feet haven't really bothered me as of late. Bone pain, hasn't been an issue lately.

    Thanks for checking on me, hoping your SE are easy breezy.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited August 2017

    tonyaberryman- bone pain from Taxol 9 was minimal last weekend, hoping for the same this weekend. Mouth sores have healed and hope no new sores appear. Hair is growing back but pretty slowly and not all over my bald head yet. Some hairs are getting quite long though. (Long being a relative term as compared to bald)

    Nails are sore. No discoloration or lifting.

    Can't believe I have 2 infusions left. Will definitely celebrate on Aug 16th when infusions are done

    Are you planning anything special when you finish your 12th

  • tonyaberryman
    tonyaberryman Member Posts: 37
    edited August 2017

    Yes!!!!! Celebration is in the works!!!!! I'm in the infusion chair now, hoping for a great weekend! #3 more to go

  • T-Sue
    T-Sue Member Posts: 207
    edited August 2017

    Hi fellow Taxol warriors, I've noticed a few inquires recently about SEs from the weekly Taxol regime. I've been keeping track of my response to it and thought I would share my experience so far. I will also cross-post this in the Triple Positive Group. Keep in mind that I am on the LOW DOSE weekly Taxol which I think is much more tolerable than the regular (less frequent) dose. I am receiving the standard treatment of 12 low dose weekly Taxols along with Herceptin. I am currently on cycle 9 of 12. My start day is Monday. I began on Monday, June 5 and should end on Monday, August 21.

    My treatment:

    Pre Meds (day of): Benadryl (IV). Anti-Nausea (IV), Decadron (IV),

    Chemo meds: Herceptin, Taxol (low dose for my body weight)

    Cycles 1 – 3

    Side Effects:

    ·Benadryl pre-med: Drowsy after treatment, need a nap; this continued throughout all 12 cycles of treatment

    ·Steroids in pre-meds: Super wired tired. Little to no sleep Monday ("day 1" – chemo day) until I figured out which drug helped me sleep (Ativan).

    ·Taxol: general fatigue, slight blood blown from nose, vag. discharge, slight constipation, surprisingly, hair stayed strong, no shedding at all, appetite fine. Fatigue was heaviest Monday-Wednesday (days 1-3)

    Cycles 4 – 6

    Side Effects

    ·Steroids: on my third treatment, MO reduced my steroids by half which helped my jitters; still only getting 3-5 hours on Monday (day 1) because so wired

    ·Taxol: four days after treatment #4 (Thursday), I noticed significant hair shedding. This has continued – every morning and evening, I brushed my hair out in the shower stall and just gently ran my hands through my hair. I don't think it would have ever stopped releasing, I just stop after a point, put everything in the trash bin and take a deep breath.

    ·Mild fatigue, still no nausea!, appetite is normal, minor bone aches, mild constipation, still have: blood blown from nose, vag. discharge

    ·My days 5-7 (Thursday to Sunday) are usually fine. Occasionally I will crash in the late afternoon on one of those days – enough to miss out on an event or family time. A little emotional/moody/irritable after cycle 6.

    Cycles 7-9

    ·Steroids: still jittery on day 1. After cycle 7 for example, I stayed up, pretty alert, until 2am and only slept until 5am. On cycles 8 and 9 I stayed up late and was able to get to sleep around midnight and mostly slept until 6am - not bad!

    ·Sleeping is fine on my days 2 and 3 (Tues and Wed) when I can take an Ativan to help knock me out. On days 4-7 (Thurs-Sun) it is sporadic – some nights I sleep ok but other nights it takes 1-2 hours to get to sleep and then I am up every 1 ½ hours. Tylenol PM (two 500 mg pills) seems to work better for me (though not a guarantee) than Trazodone (one 50 mg pill; with two 50 mg pills, I was too groggy/heavy but still waking up every 1 ½ hours).

    ·Hair continues to shed. In cycle 7, my part was wide enough and an emerging bald spot on the back of my head put me into hats whenever going outside the house. Eyelashes and eyebrows are still intact.

    ·Fatigue seems heavier, minor hip bone aches particularly when nap/sleeping, appetite is still good, mild constipation

    ·The big change beginning heavily in cycle 7 has been I feel so emotional. Lots of crying, feeling desperate/sad. Often moody and irritable, snapping at my family and generally feeling down. I discussed this with my MO on the day of my chemo #8. We discussed and she prescribed a low-dose antidepressant (Citalopram 20mg – ½ pill daily for first week, then full pill daily). It may take a couple weeks for its effect to kick in, but I already felt better having talked it through and made a plan.

    I am at the end of my cycle 9 today and I have to say, I feel pretty good. Fatigue has been minimum this cycle and I feel, emotionally, more like myself. I'm getting more confident wearing headscarves and hats out and about. The end feels near!

  • Seaster
    Seaster Member Posts: 12
    edited August 2017

    T-Sue, Good to hear your experience with Taxol. I have heard all the horror stories. It's good to hear that it's doable. I have my 1st treatment Monday







  • T-Sue
    T-Sue Member Posts: 207
    edited August 2017

    Seaster, good luck with your first treatment. Let us know how it goes. You can do this!

  • Seaster
    Seaster Member Posts: 12
    edited August 2017

    Taxol #1 in the books for me! 11 more to go! It was a long day,but it went well.I think I have a steroid buzz right now!

  • Angelica25
    Angelica25 Member Posts: 21
    edited August 2017

    Hi just wanted to introduce myself. Started DD AC x 4 end of May and the Taxol DD last week in July but had to switch to weekly after developing neuropathy and excruciating bone pain. Had my 2nd weekly tx today and had an allergic reaction again Had one last week too. So frustrating. It's not been an easy journey had my lumpectomy in May and then two weeks later my incision started to open up and seroma started. It got better by week three the whole incision opened up and you could see the biozorb. Apparently two percent are allergic to the biozorb. So now have an open wound that I'm dealing with while going through chemo just hope it heals before rads. Forgot to mention had a wound vac for a. Month and half. Cancer sucks

  • T-Sue
    T-Sue Member Posts: 207
    edited August 2017

    Seaster, congrats on getting started. One more benchmark to check off. The steroid buzz on day 1 can make it really hard to sleep. I found that even though my body is tired, my brain will not let me rest until midnight or so. Then, I take an Ativan (Lorazipam) and it helps me get to sleep then. Hope your well it's smooth!

    Angelica, I'm sorry you've had a rough road so far. An open wound must be tough! I hope you heal quickly!

  • moderators
    moderators Posts: 8,643
    edited August 2017

    Welcome, Angelica! You've come to the right place for support as you continue down this road. We are so sorry to hear of the struggles you're having, sending healing thoughts your way!

    The Mods

  • Angelica25
    Angelica25 Member Posts: 21
    edited August 2017

    Thanks T-Sue.

    I wish I had some Ativan last night! So through out my 4 DD AC and the last three Taxol, I never experienced the steroid high until last night. I was up until 4pm, wasn't sure what to do. Not really sure what the difference was from last night and all the other infusions, I always wondered when everyone posted about not being able to sleep at night because of the steriods, and now I experienced it, not fun. :(...

    Will see what next week brings...



  • T-Sue
    T-Sue Member Posts: 207
    edited August 2017

    Angelica, insomnia is a bummer! Sorry you had your first bout with it. I wonder if your team upped your steroid dose because of your recent allergic reaction and wound? If so, you might ask for a sleep aid to help counter it.

  • Abloorable
    Abloorable Member Posts: 15
    edited August 2017

    yay! Just started Taxol on Monday after AC - today is day 3 woken up feeling fine so far... great to finally find an upto date post on here lol.... I have been searching ... I'm triple negative ... but quadruple positive I will get over it! Counting down my treatments... 11 to go! Woo how!

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited August 2017

    abloorable- best of luck with your Taxol treatments. Wishing you few side effects!