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Weekly Taxol group

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Comments

  • princesstina
    princesstina Member Posts: 129
    edited June 2015

    Thanks Bekah and other ladies for answering my questions today!

  • suladog
    suladog Member Posts: 837
    edited June 2015

    Rleepac,

    about the big D, that was my problem too during my 12 weeks of taxol/h, it wasn't until 2 weeks before my last chemo that I decided to triple the doasge of probiotics I normally take, (been taking them for years) and that really seemed to stop/and or slow that D down. I told my MO, who thought it was a great idea. You might ask your doc. I just wish I'd thought of it earlier. I was cornering the TP market at Costco!

  • rleepac
    rleepac Member Posts: 193
    edited June 2015

    Thanks Suladog. I'll give that a try

  • KBeee
    KBeee Member Posts: 695
    edited June 2015

    I only have about half of the side effects I listed in the 12 days of Taxol; the rest I plugged in to finish the days. I looked on here nad filled in a few that you all have had, so consider yourselves part authors.

    My HGB initially dropped on Taxol, which MO said was still related to AC. It them stabilized and climbed, but it dropped quite a bit this week. Through Taxol it has been: 10.1, 9.5, 9.7, 10.2, 9.6. As long as it does not take another huge dive next week, I can function fine and still walk/run my miles at 9.6. I did know it had dropped though, because I was symptomatic. My RBCs are down to 3.1. On a brighter note, my WBCs are within normal range for once, and my neutrophils are doing ok too. I am not sure if the HGB drop is due to Taxol bloody noses, blood in the urine, or a combination of the 3. I don't see MO for 2 more weeks, but if it drops again next week, I will send him a message and ask about it.

    Bekah, I take Probiotics too and have not had diarrhea, but I am not on Perjeta, which is likely the biggest culprit. I hope the probiotics help.

    Princess, I am not sure what teh half life of Taxol is...I think a lot of this stuff hangs around a lot longer than we think.

  • princessofmeh
    princessofmeh Member Posts: 74
    edited June 2015

    Karen -- the 12 weeks of taxol was a hoot, a total hoot!

    I thought my hair might be growing in at #4, but I wasn't positive until #5. Or was it 6? I think it was 5. My hair's definitely coming in, but not thick enough to take off the wig, scarves, etc. That's a long, long way down the road yet. Some is starting to sprout on my legs too and in the interests of not being Madame Gorilla Legs, I asked my MO today about either shaving or Nair. She said she normally wouldn't suggest it, but my blood work has been so good throughout, she's okaying me for shaving, especially since for me it's patchy bits so far (so it's more like Madame Drunken Mohawk Gorilla Legs). Also cut my oral steroid dosage in half. This is the 2nd time halving it. I'm just constantly in orbit, jittery & jangly Might help with my memory issues & the word-dropping. One can only hope. I miss writing/work. Bad.

  • Angiel
    Angiel Member Posts: 175
    edited June 2015

    Karen- I loved your song! Just what I needed for a laugh!

    I have my last Taxol on Friday. So excited! It has been so much better than the AC. I feel pretty normal other than the steroid-induced acne and chemo brain. My leg hair has been growing in steadily since Taxol #3 or so. I use Latisse for my lashes and brows. My bottom lashes have disappeared for the 2nd time during Taxol. Last time only lasted about 1-2 weeks. My top lashes are hanging on but thin. My brows, however, are still full. I do cold caps so my hair on my head is about half the thickness of what it used to be. But I do see new, curly, wiry growth all over - about 2-3 inches long. So it must have started growing when Taxol started.

    I never have asked anything about my blood counts as I've never had an issue. I guess in retrospect, it may have been wise for me to ask for a printout so I could compare them weekly.

  • princessofmeh
    princessofmeh Member Posts: 74
    edited June 2015

    Angel, I can get the numbers for my blood work any time I want in Patient Portal, the online access point for my hospital/cancer center records, all of which trace back from the beginning. I've glanced at my Complete Blood Counts and Metabolic Panels, but nothing there to compel me to monitor more closely.

    Congrats on finishing! I've been told I should have a spa day finish date celebration and am minorly intrigued by this. Anyone making any plans? I'm not talking about throwing a party (my husband and daughter are already planning that when I've finished all 3, chemo, surgery, & rads), but maybe do something fun to mark the end of this leg of the journey. A for real spa day, for instance. Hm.

  • Angiel
    Angiel Member Posts: 175
    edited June 2015

    Karen, thank you for the advice on the patient portal information. I vaguely remember signing up for something like that when I first became a patient at my oncology center now that you mention it. Time to dig through my papers & see if I have the website, username & password. Yes, I love the idea of a spa day to celebrate finishing. I booked a trip to Chicago on Sunday - 2 days after last Taxol - for 3 nights and am splurging to stay at the Peninsula. They have the most fabulous spa and I booked a day of spa treatments for my hubby & me for one of our days. Otherwise, I look forward to sleep and room service :) My husband had stage 4 tonsil cancer 6 years ago and we did the same trip the weekend after he finished chemo & radiation. I guess it's a family tradition now....one that I hope doesn't repeat itself.

  • tryn2staycalm
    tryn2staycalm Member Posts: 470
    edited June 2015


    NinjaMary -  I have total weakness, fatigue (wiped out) 24 hours after for 2-3 days.  How do you do it?  Do others have a similar reaction or is it just me?

    Karen - so cute on the 12 days of chemo.

    #3 Taxol tomorrow.

    Cathy

  • trvler
    trvler Member Posts: 931
    edited June 2015

    Angiel: May this be your only spa trip. Enjoy!

  • melb44
    melb44 Member Posts: 64
    edited June 2015

    Congrats Angiel! I am so happy for you. Enjoy your trip you deserve it.

    Trvler - AC went fairly well for me other than all the issues with my port. I got two blood clots and had to be put on blood thinners. I had to have a PICC line put in for one treatment because of the clots. Other than that mostly just tired and nauseous.

    I had my first Taxol yesterday. They are still having problem with the blood return. They had to use the TPA again this week so I know need to get a Portogram to get it checked out. Yuck.

    I feel pretty good today so much less nauseous than with the AC. It will be interesting to see how I feel tomorrow after the steroids wear off. I guess I better get a bunch done today.

  • arunbala
    arunbala Member Posts: 3
    edited June 2015

    Hi,

    My blood counts have been decreasing steadily with each passing Taxol, even though the otherside effects are quite manageable till now.

    After 6 Taxol, my TLC(total leukocyte count) is 3900(normal range is 4000-8000) and Lymphocytes are 18%. (Normal being 20-40)

    I am thinking of asking my MO to give me an extra week of break so that my immune system gets a better chance to recover.

    Does anyone has done that?

  • KBeee
    KBeee Member Posts: 695
    edited June 2015

    Arunbala, They usually are more concerned with the ANC (absolute neutrophil count) than the lymphocytes. They typically will not put off chemo unless they fall way below norms. If ANC fally below 1200-1500, they will usually put it off a week and/or give neupogen.

    melb, I hope you keep feeling good. I have felt pretty much fine on Taxol.

    Cathy, I think it varies person to person. I have honestly felt really good on Taxol. I got Taxol #5 on Tuesday and worked an overnight shift at work last night and am on call today. I fell really good and walk 3-7 miles per day (and often run a few of them). I hope your fatigue lessens.

    Angiel, Congrats on finishing this week! I am so glad you are treating yourself to a special trip and spa day. You DESERVE it!!!!!!!!!!!!!! Very happy for you!

    Karen, I have a little peach fuzz on my head. Last time that was the precursor to real hair, so I am hoping my hair is not far behind in starting to come back as well.

  • ninjamary
    ninjamary Member Posts: 67
    edited June 2015

    arun - it's very rare they will stop your taxol due to your leukocyte counts being low. I had a second port put in on a Wednesday and I had chemo scheduled the very next day as I missed the former week of AC. My white/red/ are low, the liver shot up to 3x what it should be one week and I keep going. When red's are extremely low I see people getting transfusions which can take 3 hours.

    I've noticed Taxol is cumulative on SE and blood reporting, but it's a walk in the park compared to AC (for me). I just want it done. If my port clots again they can and will go through my veins. I just want this done on schedule as I sit here at 2:00 am wide awake with sweat dripping off my head.

  • leighrh
    leighrh Member Posts: 102
    edited June 2015

    YEA! YEA! YEA!  Taxol #2  yesterday for me was easy breezy, they gave me pre meds then let me sit for about 30 min then started the Taxol pretty slowly.  No reaction.  Went home, slept from 7pm to 6am and feel great today besides some steroid flush in my face!!!  I 'll brace for the muscle pains that should begin Sat night but those  I can handle!

  • trvler
    trvler Member Posts: 931
    edited June 2015

    Yeah, Leigh!!!

  • tryn2staycalm
    tryn2staycalm Member Posts: 470
    edited June 2015


    NinjaMary - Here in Ontario Canada we use ports only if long term chemo is required as they can be left in longer.  My picc line was inserted into my vein by guide of a ultra sound by an expert who only does that.  He is very good at it then they sent me for an xray to make sure it was where it should be.  Was done in half hour. Ever consider that?  He told me picc lines can't be left in as long but have a much lower rate of complications and infections and the surgery required to put them in and out.

    Did Taxol #3 today.  Long day.. tired. 

    Liegh glad it went off easy for you with out reactions!

    Cathy

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited June 2015

    Leigh I am in your boat. I had my first taxol last week. 10 minutes in my stomach seizes up with intense pain that moves to my back. Then my face flushes and feels like it growing and I CAN'T BREATHE. The nurses were there and shot me full of crap and the reaction went away and they finished the infusion slowly.

    Fast foward to today. They up my Decadron to 20mg. They up my benadryl. They get started. I make it through the first 50 minutes of the infusion. During the last ten minutes a power struggle tug of war commences between the steroids and antihistamines and the taxol. My body would start to go into a reaction..then stop. Then start..then stop. My face got flushed and swollen again. It was much less severe than last time but still! My MO came over and wanted to stop the infusion. I told her hell no. I had 7 minutes left at that point. I told her as long as the medicine was going in and I could breathe we were moving foward.

    Now she's talking about switching to Abraxane. I don't want to switch! So now I have to take more steroids at night before the next infusion on top of the 20mg of dexadron. My face looks like a pizza. Sigh. Who continues to react??

  • KBeee
    KBeee Member Posts: 695
    edited June 2015

    tresjoli, the reactions may get worse every time. most people are not allergic to Taxol, but actually to the solvent it is in. Abraxane does not use the solvent. That is why it does not cause reactions. You may want to consider MO's suggestion.

    Leigh, Glad it went well today. I get 20 mg of Dex too. That must be my MO's standard.


  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited June 2015

    My MO seems to be concerned about all the steroids I will need to take and the weight gain that comes with it that will be hard to take off (according to her)

  • rleepac
    rleepac Member Posts: 193
    edited June 2015

    I had a rash reaction on the first Taxol but they do Benadryl in my pre-meds and I don't have that anymore. I don't take any steroids because those cause more problems for me than their worth. But I do get puffy and swollen from the Herceptin for a day or two and then I'm ok on that front.

    I just did Taxol/Herceptin #9 on Thursday and I'm feeling pretty good today. A little tired still and the puffiness is starting to go away. Diarrhea not nearly as bad this time so I think that must be the Perjeta that I get every 3 weeks that causes the severe diarrhea problem. Don't know but so far today its not a problem. But the day is still young...we'll see. I'm supposed to go to a 25 year High School reunion tonight so it would be great if the diarrhea could stay gone!

    Bekah

  • trvler
    trvler Member Posts: 931
    edited June 2015

    Have a great time, Bekah and may you be D-free!

  • pennsygal
    pennsygal Member Posts: 264
    edited June 2015

    Tresjoli - they switched me to Abraxane after I had a reaction to Taxol. As Kbeee said, it's the same drug, just in a different suspension. No drugs at all after the infusion - no steroids, etc. So far it's been pretty easy to tolerate, with very little nausea.

  • KBeee
    KBeee Member Posts: 695
    edited June 2015

    Bekah, Glad you are feeling better this round. I have heard that Perjeta can cause severe diarrhea. Happy you do not have it every round. Hope the numbness improves.

  • tryn2staycalm
    tryn2staycalm Member Posts: 470
    edited June 2015


    I completed my 3rd straight Friday weekly Taxol.  I will continue for now without a Friday off.  Good news is my terrible cough is better.  So its working somewhere.  I pray it is working on my latest liver lesions as it is the one place my oncologist said is most concerning to them as it is the most lethal.  Also I'm praying it works on my bone mets as they are the most painful for me.  The hydromorph Contin 3mg and the hydromorphone  1 mg (for severe pain) has me much more comfortable now but still if I'm active I still have spine pain.  Also hip pain.  Don't want to go to the pain patch already.  Fingers crossed.

    Cathy

     

  • kerryd423
    kerryd423 Member Posts: 53
    edited June 2015

    Has anyone had a dose reduction or had to stop Taxol due to side effects? I have developed a worsening rash, likely due to Taxol. Started around week 4 with a rash on my hands- felt like a sunburn. The rash peaked on days 2-3 and then subsided before my next treatment. At first I thought I was sun sensitivity, but the following week was worse with the rash and swelling. The following 2 weeks it continued to worsen in intensity and spread to up my arms and to my face this past week. The burning and swelling is quite intense at its peak. When I return for treatment the following week, it is visible, but not as severe. This weekend I took pictures of it and sent to my MO today. She wants me to see dermatology prior to my next treatment. Not sure if they will prescribe decadron or if my MO will do a dose reduction. Also not sure why dermatology is weighing in, thought it would be better to see allergy/immunology.

    Anyone have a similar experience?

    Thanks!

  • princesstina
    princesstina Member Posts: 129
    edited June 2015

    I get a rash each Sunday night after a Tuesday infusion - I thought it was sun related? Just on the apples of my cheeks? Keep me posted as what the derm says!!!

  • ninjamary
    ninjamary Member Posts: 67
    edited June 2015

    Kerry - I get rashes too. Placed in weird spots. For awhile they were on my arms. Then those vanished. Then my back. Vanished. Last set I had one the back of leg and on my right bottom hip bone. Now those are vanishing. I don't get it. My MO is aware of the rashes, but no reduction in taxol.

  • trvler
    trvler Member Posts: 931
    edited June 2015

    I am not getting any rashes but I definitely have more acne than I am used to. It's not too bad. Just need to make sure I wash my face twice a day.

  • kerryd423
    kerryd423 Member Posts: 53
    edited June 2015

    Ninjamary- is your rash a burning rash with swelling/inflammation? I think they are concerned because the severity of mine increases each week and it is spreading, not moving from one place and clearing up.

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