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Weekly Taxol group

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Comments

  • Amelia01
    Amelia01 Member Posts: 178
    edited March 2018

    Hi NoteRed- I just did my first yesterday too.sorry you aren’t feeling well. Will yourself better!!


    I was panicked about having some sort of bad reaction and I was in a room all alone and I asked if they had any procedures in place if I were to wig out or have an acute allergic reaction and all I was told was to keep the door open and hold th emergency button in my hand. Needless to say I almost gave myself a panic attack.

    Is anyone cold capping during Taxol?

  • mjb1018
    mjb1018 Member Posts: 151
    edited March 2018

    Thank you so much LisaRx...and missmelissa...Glad to hear I'm not crazy to think the Taxol is rough. :)

  • nonahope
    nonahope Member Posts: 695
    edited March 2018

    Lisa...You give me hope with the neuropathy...but, I have a way to go!!

    Hope

  • MAgerton
    MAgerton Member Posts: 1
    edited March 2018

    Hi,

    I’m starting weekly taxol on Wednesday. I will be 3 weeks on ~ one week off. Can anyone tell me if they lost their hair on Taxol (alone). If so, could you give me a time frame?

    Thank you so much

  • nellabella
    nellabella Member Posts: 74
    edited March 2018
    • I don’t understand how waiting a month for surgery after chemo can be good.
    • Can’t the tumor grow during that time or continue to spread ?
  • gussy
    gussy Member Posts: 77
    edited March 2018

    Idkidk - your body has been poisoned by chemo for all that time you were on it and needs to recover i.e. blood cells, painful muscles, etc. Supposedly, the tumor is supposed to have shrunk, gone dormant or whatever. However, mine did not and only showed areas on it that the chemo had attacked. And it was larger than originally diagnosed - BUT it was only a Grade 1 tumor so slow growing. Knowing what I now know I would have gone through with the surgery first, had the tumor tested for chemo response before going through it. But, that's hindsight and can't be changed at this point. Even as large as it was the surgeon got clear margins and there were only 2 positive nodes so I'm very hopeful.

  • nonahope
    nonahope Member Posts: 695
    edited March 2018

    MAgeton...Yes, you will lose your hair with Taxol. I think mine started thinning after the 3rd infusion...then it came out in clumps. Just be prepared for it and it won't be such a shock.

    Gussy....Good response to idkidk

    Taxol # 15 for me tomorrow. Hoping the dosage can be reduced. This neuropathy and burning on the top of my feet has to go!

    Hope

  • LisaCincy
    LisaCincy Member Posts: 316
    edited March 2018

    Another night and very little neuropathy pain once again. Woot!

  • tld2017
    tld2017 Member Posts: 147
    edited March 2018

    Amelia, I am cold capping! Using Penguin. Yesterday was my 2nd of 12 weekly Taxol treatments. I am also getting Herceptin and Perjeta. I'm still hopped up on steroids so feeling pretty good but I know from last week's experience that the discomfort will probably start sometime tonight or tomorrow morning. It's all manageable but definitely not comfortable! Are you cold capping too?

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited March 2018

    Paisley2916— I had roaming bone and joint pains during the first few weeks of Taxol. My MO said to take 2 Aleves every 12 hours. I took Claritin each day and 2 days after infusions, took 1 Aleve every 12 hours which helped quie a bit

    I hope you find what works for you

  • nonahope
    nonahope Member Posts: 695
    edited March 2018

    LisaCincy...You give me hope!!

    Hope

  • missmelissa90
    missmelissa90 Member Posts: 23
    edited March 2018

    So got my surgery date and it is May 2nd- that puts me at 8 weeks post chemo. I was a little shocked by this and when I met with my oncologist he said that it is the surgeon's call as to how far out they schedule and because I did a lot of chemo, both AC and 12 weeks of Taxol, that is why it is probably scheduled this far out. I had the same feeling that Idkidk had with worry about the tumor growing in the mean time and wanting to get it out, but it seems like recuperation is a higher priority. I am just going to enjoy the next four weeks and try to get in the best shape I can for surgery. One interesting thing I learned from my oncologist was that MRI's have a hard time discerning between what is tumor and what is regrown tissue, so I'm going to have to wait until they do the pathology to find out really how well it responded to treatment. He said that there is a chance (very small) that maybe the tumor is actually all gone, and all that is left was regrown tissue and this is what is showing up on the MRI.

    MAgerton- I hate to tell you that my eyebrows and eyelashes (which survived my AC chemo when my hair didn't) all fell out by week four of Taxol and though my hair started growing back by week six, my eyebrows are only now starting to come back in - seemingly one hair at a time.

  • Amelia01
    Amelia01 Member Posts: 178
    edited March 2018

    tldl2017 - I'm cold capping with Dignicap. I made it through the first two ECs without struggle but these last three times (two EC and one Taxol) and I want to rip the cap off my head. I can't stand it. Then I look in the mirror and I still have enough hair to somewhat get by (if I use Nanogen on the bald spot). I'll just have to bite the bullet and drug myself for the next 11 rounds. My MO won't let me combine any of the Taxols to shorten the treatment or do it every two weeks.

    Missmelissa - really only now after 8 weeks PFC that your brows are coming back :( I don't know what to say about the surgery time, but your body does need to be in tip top shape for that recovery so guess the doctor knows best. Keep us informed about the pathology vs MRI reading.

  • paisley2916
    paisley2916 Member Posts: 55
    edited March 2018

    Hi All! I had my second Taxol infusion yesterday and talked to the nurse about the pain I had last week with the first one. She seemed puzzled by this and said this doesn't normally happen. She spoke to the doctor about it and came back and told me that this is what he said: They recently changed manufacturers of the Taxol drug. Some patients have been having this horrible pain since the change. Now, I have to take claritin every day, an additional steroid for 3 days after treatment, and tramadol (strong pain killer) Thursday night and Friday morning and every 6 hours after as needed. My pain started on Friday last time, so she said it's important to stay ahead of the pain or it won't be effective. She assured me that the doctor said this has worked for other patients. I'm quite annoyed with this whole situation. If people are having issues with this new manufacturer, then why put them through all of this - just switch back to the other one! I suffered for 3 days straight last week for them to save a little money!!!! Now, I have to used 3 additional medications - at my expense - to HOPEFULLY avoid these side effects for these 11 weeks ahead of me! I hope enough people complain so they switch back to the other manufacturer and I don't have to deal with this for the rest of the time I'm getting this drug. I also worry about what it's doing to my body. If I'm having this pain all over - my body is rejecting/fighting/having trouble processing something! I worry about long term/permanent issues with this. Ugh! Well, I guess I'll find out tomorrow if this new regimen works.

    I did better with icing my hands and feet this time. I didn't do it during the pre-meds - just during the taxol itself, which is an hour long. I hope that's enough. I left the ice on for the entire hour - I was proud of myself! Last week, I had to keep taking breaks! So, I will continue to do it every week.

    I haven't noticed anything with my fingers or toes yet as far as tingling. My nails still look good too. I realize I've only just had my second treatment and these issues still may come up later, but so far so good.

    I hope you all have a fantastic weekend! I wish for everyone to have a pain free, symptom free, stress free weekend! Hugs!

  • astyanax66
    astyanax66 Member Posts: 223
    edited March 2018

    Hi, all,

    This is my first post here--I'm usually hanging around the Triple Positive group. I start weekly Taxol on April 10 (along with Herceptin) for 12 weeks. Then, I switch to Herceptin once every 3 weeks to complete a year. Because I have spinal stenosis, I have a lot of back/neck pain going into this and have been advised to cut way back on my Aleve (I take Aleve and Tylenol twice a day, plus Tramadol in limited doses--it's hard to get a refill, so I only use it for bad days). I admit that worries me, so I'm going to be speaking up a lot if I need something stronger to manage bone/joint pain. I admit, that's a big concern of mine because I know short walks daily are good--but if you hurt so much you can't walk, that's not good, either. My treatment days are Tuesdays; they told me that Tuesday and Wednesday may be "pretty good" days, but to expect Thursday and Friday to be harder. We shall see what happens; I know everyone is different.

    Hair is soooo much an individual choice, but I have worn mine super short before (think Annie Lenox), so I decided to get it all cut off (in stages--it's short all over except in front now) in about a week or so.

    Hope you all have a positive week!

    Dee

  • MHerzberg
    MHerzberg Member Posts: 4
    edited March 2018

    I just finished #10/12. 2 more to go. I haven't had many SE from the Taxol. Biggest is loss of hair and new allergy to sun. I always wear long sleeves, as it is still chilly here and I stay cold. So my hands and face now have rash on it. They said this is common with the chemo. Had anyone else had that issue? My MO says it will go away once I'm finished with the Taxol.

    #2moretaxoltogo. #radiationnext


  • nellabella
    nellabella Member Posts: 74
    edited March 2018

    enjoy the upcoming weeks. Guess they know what they’re doing .

  • nonahope
    nonahope Member Posts: 695
    edited April 2018

    Just hopping in to wish everyone a very HAPPY EASTER!

    My neuropathy is really bad...it's difficult to walk without feeling I'm going to topple over. Had my 15th taxol last Thursday and it will be my last. Saturday and Sunday have been my routinely "bad" days of chemo, but this neuropathy hangs on. I'm just praying this disappears soon. I went to my sister's husband's 80th surprise birthday party yesterday. I know people probably thought I was staggering on the way out, but I only had water to drink. Oh, I hope this clears up. I will be back on Ibrance/Femara in a couple of weeks.

    Enjoy this blessed Sunday!

    Hope

  • Taco1946
    Taco1946 Member Posts: 630
    edited April 2018

    nanahope - my neuropathy was very painful but went away after last Taxol. Hang in there.

  • PaulaAtlantaGA
    PaulaAtlantaGA Member Posts: 65
    edited April 2018

    Nanahope: I finished taxol on 3/21, and my neuropathy has retreated to the tingle stage in eleven days. I hope it continues to dull itself out until it's gone.

    I am finished with taxol and carboplatin. I am finished with chemo . . . for now. I will learn this Wednesday, 4/4, whether I have a mastectomy or lumpectomy. Because biopsied nodes were positive in October, 2017, I will have axillary dissection, either way.

    I'm just today, day 11 post-chemo, beginning to feel like I can walk more, do more around the house, and see my way towards strength. Here's to regaining strength in time for my 4/23 surgery!

  • nonahope
    nonahope Member Posts: 695
    edited April 2018

    Taco...Thank you for letting me know your neuropathy went away. I'm praying mine does the same. I really worry since I know Taxol is capable of causing permanent neuropathy.

    Paula...Eleven days? Music to my ears. I will be counting down each day. Today, would be day 4 since my last Taxol. It has hit me hard. I could handle the tingling, but the pain and burning is another story. I, too, am praying for strength...it takes me forever to do anything with these painful/burning feet!

    I will be praying that all goes well with your surgery in a few weeks.

    Hope

  • Taco1946
    Taco1946 Member Posts: 630
    edited April 2018

    Nonahope - I was also given gabepentin (I think that's how it's spelled) for my neuropathy. It is also often used for shingles which made sense to me.

  • nonahope
    nonahope Member Posts: 695
    edited April 2018

    Taco...I'm taking Gabapentin, but a low dose...100 mg. 3 x a day. Do you remember what dosage you were on? I'm going to have to turn it up a notch because this isn't working.

    Hope

  • Taco1946
    Taco1946 Member Posts: 630
    edited April 2018

    Hope - 300 mg. 4 x day. The original dose given me by MO was much lower but I also see a neurologist (I had brain surgery for a intercerbral hematoma 10 years ago and still take anti-seizure medication) and he upped it to that amount. With that dosage, he did have me taper off when the neuropathy went away.

    Because I had no lymph node involvement, MO stopped the Taxol at 8 doses.

    Feel better soon.

  • NLC212
    NLC212 Member Posts: 1
    edited April 2018

    I'm new to the group. I am 1/2 way finished with chemo, having 4 AC treatments behind me and starting my first Taxol treatment on Monday. It was suggested that I try a foot and hand ice bath while undergoing treatment. Does this really help? How uncomfortable is it keeping hands and feet on ice

  • kamalokitty
    kamalokitty Member Posts: 11
    edited April 2018

    Happy Easter Nonahope! Did you report to your doc about the pain from neuropathy? Because there's no reason to suffer. My doc gave me gabapentin, and the prickly feels and pain is finally fading. I was falling down a lot before that, so I feel you. The neuropathy does linger. I had my last taxol probably a month ago, but I'm still feeling a "spray" of pins and needles once in a while, but the pain in my hip is fading, and I feel it going away. Ask your doctor for something. I know they also prescribe Lyrica for neuropathy pain, but it might be an opioid, and I didn't want to take that. So I have Gabapentin, and I think it worked.

  • nonahope
    nonahope Member Posts: 695
    edited April 2018

    Taco...Thanks! I added an extra 100 mg. last night. I've been icing my feet throughout the day and using Aspercreme with Lidocaine which helps to temporarily ease the burning pain. I did sleep better last night. I guess only sleeping a couple hours for several nights finally catches up with you. It bothers me that I'm so unsteady on my feet. Hopefully, this too shall pass.

    NLC...I didn't ice my feet or hands during Taxol. I had a total of 15 infusions. I am now icing my feet due to the neuropathy caused from the Taxol. There are people on the board who have iced and can answer your question. I wish you the best on your journey.

    Kamalokitty...Oh my! Were you falling down due to the neuropathy? I do have to take each step slowly and sometimes feel like I might fall. Yes, I am taking Gabapentin. Upon speaking to the pharmacist, he did tell me it takes awhile to get in your system. I'm taking a low dose - 100 mg. 3x a day - but I added another pill at night before I go to bed. I've only taken it about 1-1/2 weeks, so it should be kicking in soon. Like you, I don't want to take anything that will make me loopy. I do take Advil a couple times a day, as well as an Ativan now and then.

    Hope

  • moth
    moth Member Posts: 3,293
    edited April 2018

    Who wants to help me shop? :D

    I should be starting taxol in about 3-4 weeks (my blood counts keep going wonky so my schedule is all over the place)

    I want to know how many pairs of these booties I should get? (or if you want to link me to better ones, go ahead..)

    I believe the taxol infusions here take about 2-3 hours. https://www.amazon.com/NatraCure-Cold-Therapy-Sock...


  • moth
    moth Member Posts: 3,293
    edited April 2018

    Oh & is anyone doing massage for treatment or prevention of neuropathy? I saw this one case report of massage treatment for chemo induced peripheral neuropathy. I'm tempted to book lots of massage therapy because I figure it might help & if not, massage is always a good thing anyway... https://www.ncbi.nlm.nih.gov/pubmed/21766161


  • Amelia01
    Amelia01 Member Posts: 178
    edited April 2018

    Hi Moth --- I bought one pair of those socks (they came with gel packs) and I bought additional gel packs ( a six pack). I have done two weekly Taxol so far and I have not used the socks. I'm icing my head and couldn't bear the thought of icing another body part. I have elected to do 3g of fish oil a day instead. Of course if things start getting tingly I'll slide those puppies on straight away. They seem to be the right ones to do the job and all you need is one pair plus the extra gel packs.

    I'm also using OPI original nail strengthen .... read about it somewhere probably on one of these boards.

    https://www.amazon.com/gp/product/B00ZVI485Y/ref=oh_aui_detailpage_o00_s01?ie=UTF8&psc=1

    My Taxol infusion is only an hour.

    BTW- I came across the article you posted elsewhere about best life style changes to make --- Excellent read!!! Thanks for posting.

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