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Weekly Taxol group

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Comments

  • Birdie56
    Birdie56 Member Posts: 19
    edited March 2016

    Karenbo, Praline and Nolagirl thank you. I'm truly shocked at the response from my Onc. I feel very uncared for. I've decided to drag my butt in on Thursday for my infusion appt. so they have to deal with me. They do take blood before each tx. for blood count. So what if it IS low as I suspect? If he sends me to my family dr. to treat me for that I will fire him on the spot! I've lost 11 pounds since last Thursday. 11! Cannot eat a thing, I gag. Please forgive me for whining so much, sweet ladies, I'm kinda scared right now. Sweet dreams to all.

  • Praline
    Praline Member Posts: 101
    edited March 2016

    Birdie - I hope you feel better soon. And I would be FURIOUS at my MO if he dismissed me like that! I looked again over the info I was given for Taxol and it clearly states to contact your doctor immediately if you experience certain side effects and shortness of breath is one of them. It also says to contact your medical provider if you are too nauseous to eat. I would not wait till Thursday if you do not feel better tomorrow. I would call MO again. If same response, I would call Primary Care.

  • angiesgo
    angiesgo Member Posts: 16
    edited March 2016

    birdie - I'm sorry you are going through all this, I hope your MO realises how your feeling and takes some accountability and compassion.

    I'm just had taxol 10 and have been lucky to have tolerated it quite well. My worst SE has been my taste buds. Do these return to normal soon after finishing chemo, or does it take a while, I really want to go back and enjoy my veggies and salads which right now taste so bitter.

  • ladyhumps
    ladyhumps Member Posts: 56
    edited March 2016

    (((birdie))) I am sorry you are having these problems! I'm not going to call that whining, you've earned the right to complain!! That's a big weight loss for a week. My se have been manageable with the meds I have but I did have to call once about neuropathy and the nurse got right back to me. I was told if I had ANY problems they wanted to treat me since they know what drugs I'm getting and know how to deal with them. Unless it was an emergency, of course. They are to be notified immediately if this happens.

    I had #7 today with another reduced dosage because of lingering neuropathy. Was delayed last week to see if it went away. I still have just a little tingling in fingertips of left hand. An improvement from both hands and my foot sometimes. The upside is I got to skip 4 neupogen shots. Doc said the reduced dose should help with wbc counts. And diarrhea is much better. I've had an itcy rash on my hands and I had treated the itch with some cream I had for dermatitis. After reading on here I figured it was from Taxol and turns out it is. Still have redness there. Also, Hello! clogged nose pores and chin pimples. Taxol got the blame for this, too. On the other hand, I'd be happy to tell my dermatologist that Taxol cured my scalp seborrheic dermatitis. Have tried many things, but chemo did it. I've had this going on 2 years.

    When I checked out today I asked about my co-pay, the clerk said no, one of the local women's charities had paid $150 on my account so I was covered. Also, met 15 of my friends from work for lunch last week. They had collected $ for me, too. I am so thankful for these donations! I'm single, getting 1/2 pay and it really helps. Thankful for good insurance, too.

  • Deaconlady
    Deaconlady Member Posts: 86
    edited March 2016

    What a sweet thing for your friends to do, ladyhumps! I have #4 today. So far, no SEs, just fatigue. I'm a single mom, and a dear group of friends bought us a ton of food last weekend. My freezer (and my parents' is full)! Such a thoughtful thing for them to do for us. I'm still working full time, and really hope I can continues.

    Hope you all have a good week.

  • Mmesamom
    Mmesamom Member Posts: 5
    edited March 2016

    Taxol 10 of 12. I also have the fingernail and tip of my nail soreness. So happy to be almost done. I feel so discouraged today since I was told that they are recommending radiation after chemo and that pushes my reconstruction back by 6 months. Two steps forward one step back. I just needed a safe place to vent. Keep kicking butt ladies!

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42
    edited March 2016

    Hey Taxol Ladies,

    I just got my first weekly infusion of Taxol post AC. Handled the infusion day fine (iced hands and feet). Day 2 not bad but tonight have red itchy palms.....anyone have this or insight?

  • tesla
    tesla Member Posts: 32
    edited March 2016

    I had itchy fingers at week #7. Looked liked raised welts (itchy and tender). and when they dry up, the skin started to peel. Not sure if your itchy were from just dry skin or can u see anything on your palms?

    Through my 12 taxol, I had more dermatology issues than others!!

    image

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42
    edited March 2016

    Tesla,

    They are not dry or peeling....just itching and red. Do you take more antihistamine for it?

  • LiLNutmeg
    LiLNutmeg Member Posts: 8
    edited March 2016

    Birdie .. hugs .. hope you are feeling better  ... we're all rooting for you.

    I'm on Taxol 6 and the exhaustion, constant headache and bone pain are really making me weary.   MO prescribed oxycodone which doesn't even touch the pain .. so I'd rather not take them as they make me feel loopy. Neuropathy has been mostly in one foot only .. and comes and goes.  

    Spring has finally sprung here in the snow belt .. saw a robin in the backyard this week.   Am on a mission to find some summer hats and scarves instead of wearing my winter knit touques ...  not so easy to disguise the shiny dome now that the weather is warmer .. and of course I'm now getting those pity looks which I hate (sigh)

    Thank you all for just being you .. with the love and support we all bring to each other ... couldn't do it without you all  *big hugs*


  • Angtee15
    Angtee15 Member Posts: 72
    edited March 2016

    Birdie I could see your primary care doctor just sending you right back to oncology and then you get stuck in this back and forth when it's the last thing you need! But it might not be a bad idea to let primary care know what's going on especially if they are in the same medical group. You need an advocate on the inside. Did you work with a breast nurse navigator at diagnosis? Call him/her. This all seems so unusual.

    I hope you feel better soon!!

  • tesla
    tesla Member Posts: 32
    edited March 2016

    DFWFLYGIRL: I had two episodes of itchy hands. first time I got prescription for Methylprednisonepack. Second time, me and my oncologist don't want to do steroid again (because my port incision was still not healing well). So I got over the counter hydrocortisone cream and Alleve pills for anti-inflammatory.

  • jodes001
    jodes001 Member Posts: 54
    edited March 2016

    i stumbled upon this site, and its pretty entertaining!!! Plus a few head/wig/hat ideas!!

    Enjoy!

    http://krystacouture.com/

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42
    edited March 2016

    Tesla,

    Thanks for the tips. My MO said to take Benedryl and I did and it helped. I took Aleve today for bone pain and itchiness and it helped. Hope it stays at bay:))

  • Deaconlady
    Deaconlady Member Posts: 86
    edited March 2016

    I finished #4 on Thursday. Had a touch of the big D early Friday morning after finally falling asleep, but at least I woke up! 😀 I still have my hair, so I'm wondering when that is going. My biggest thing is the fatigue so far.

  • MissBee123
    MissBee123 Member Posts: 24
    edited March 2016

    jodes001 I know Krysta! She is a lovely person and I love reading her blog.

    I'm on day 4 of Taxol and can barely keep my eyes open. I knew fatigue was part of the treatment but I was not expecting to sleep as much as I do. Currently averaging 10-12 hours a night plus a nap during the day. Are other people sleeping this much???

  • Deaconlady
    Deaconlady Member Posts: 86
    edited March 2016

    Hi MissBee. I'm not sleeping that much, but I feel like I could! I had a 2 hour nap yesterday and then could barely keep my eyes open to get in bed before 11!

    LOL


  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited March 2016

    MissBee- I just finished #3 Taxol. I am not a "day sleeper" but stayed home today from work to lay horizontal and "rest". Just feel like my muscles have no energy. Not really pain...just blah

  • ladyhumps
    ladyhumps Member Posts: 56
    edited March 2016


    If you get the opportunity to attend a LGFB session you should go! I hesitated because of the drive but I went today and it was well worth the trip. My bag had 19 items, including one travel size cleansing cloths pack. Everything else was full size. There was a little variety between bags. The presenter was so nice and gave us lots of useful tips. Everyone looked so good afterwards. I felt spoiled. lol Wigs and scarf tying were demonstrated, too.

  • ncsue927
    ncsue927 Member Posts: 13
    edited March 2016

    Birdie, I have the same reaction. I get Taxol on Monday. On Wednesday afternoon, my gut goes haywire and I have very painful, weird stools. On Thursday I am so fatigued I can't get out of bed and I stay there until Sunday. Short of breath, fever, body aches that would put down a horse. And each week, it seems to get worse as the drug builds up in my body. I just finished number 12 and final Taxol today. Last week my MO wrote me out of work for Thursday and Friday and also reduced my dose. That really helped. I also take Advil which helps a lot. But this TAxol has knocked me on my butt, which I wasn't expecting. But I powered through; I mean, what else are you going to do, right? And now it's done. No more. Hang in there. And rest, rest, rest.

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42
    edited March 2016

    Congrats NCSue....your done!! Did you have dose dense or weekly Taxol? I just started weekly and first 48 hours ok....by 72 hours bone pain and aches and increasing fatigue. By day six. .nausea and vomiting. Doc said he thinks I have a bug as Taxol doesn't have delayed onset of nausea....etc. Did you have any nausea issues in your Taxol?

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited March 2016
    • Congrats NCSue! You are DONE! What an awesome feeling!
    • DFWFLYGIRL - I haven't experienced nausea or vomitting on weekly Taxol. I am between weeks 3 and 4. My SEs so far have been flushed cheeks, ACNE, lower stomach pains, raw feeling in mouth, and exhaustion. You may have a bug :(
    • Birdie- hope you are feeling better!! Were you able to talk to your MO
  • Sawyer
    Sawyer Member Posts: 33
    edited March 2016

    Hi all;

    I have been keeping up on reading the posts but haven't commented in a bit....Taxol kicking my butt!

    Ladyhumps- I took in a LGFG class last week! it was fantastic. Wow a whole kit of very expensive make up and beauty products a real treat. Plus the gal taught me to do eyebrows!!!

    NCSue - congrats on being done! Celebrate!!! Do you do radiation next?

    DFWFLYGIRL - no N&V really for me; unless i eat something spicy that doesn't' agree

    My new norm is unfortunately so much muscle and joint pain and the fingernail pain is so bad. I am exhausted more than i have ever felt.....I am on Taxol #9 this week. The MO tells me this is all normal and that it is cumulative so the next 4 weeks are going to just get worse. the exhaustion seems to be worse by the 72 hours as well but its always there. Sleep is a mystery.....I am so tired but my sleep is disturbed by dry mouth, thirst, muscle/joint pain......so i am up every couple of hours. I did manage a couple naps on the weekend which was nice. I would never have imagined how bad my fingernails could hurt! its crazy! I have had some episodes of both constipation and diarrhea in the same day....that just makes no sense!

    The MO offered more steroids for the muscle pain but I don't want any more.....I have already gained close to 30# without any change in my eating habits so the steroids are doing a number on me. I have tried the tylenol but it doesn't do anything and my nose bleeds are so bad currently that i don't dare to take ibuprofen. i don't want to take pain meds so i have not asked for those.

    I am thankful for this site and this group. it is validating when i see the same SE out there that i hear are "unlikely" but we are all experiencing them. I think the MO down play them....but honestly Taxol is as tough if not tougher than A&C. Different SE but just as tough....the cumulative effects are taking their toll but i am thankful to chat about it with all of you.

    I am trying to still work 2 1/2 days per week. i had to call in yesterday; it was just too much.

    I hope everyone has a positive day and I hope SE are less.

    Take Care

    Sawyer


  • ladyhumps
    ladyhumps Member Posts: 56
    edited March 2016

    ncsue Yay!! you're done with chemo!

    dwfwflygirl no nausea/vomiting for me either, sorry you have it whatever the reason. Vomiting is one thing I can't handle. When I feel it coming on it's like I'm paralyzed but know I need to get to the bathroom or at least a trashcan. But I'm afraid to move!

    sawyer she did my one of my brows and had me do the other. I had less than anyone there. lol I had several clogged pores this morning though. It was looking better, with only a couple spots. Another lady there was having acne issues, too. I didn't see anyone blowing their nose but me and it was bad yesterday. Several times I've bent over and it just drips. I hate it. But, oh well, part of it.

    anyone How often do you have an office visit between treatments? My first was 3 weeks after starting, now it's every 2. I asked for copies of notes a couple weeks ago and was surprised when I read them. The side effects they'd noted were bone pain, wbc counts and neuropathy, even though I'd told them about the diarrhea every time and other se when I had them. I guess since I was usually better by next treatment it was ok.

    I thought with the reduced dosage I'm getting now (for neuropathy) the diarrhea was better but it's back. I've only had one nose bleed, what I had was bloody tissues when I blew my nose but that's much better with the reduction. Now it's occasionally pinkish. I'm able to skip the neupogen shots for now, too. I have a bone scan scheduled Thursday and also an appointment to see about radiation. I am nervous about the bone scan results.

  • Sawyer
    Sawyer Member Posts: 33
    edited March 2016

    Ladyhumps - I see the MO or the PA that works with her every week before I treat. I arrive, have blood work, see the medical assistant, then i see the MO or PA, and then once cleared I go right to the chemo suite.

    they told me i will have an MRI after radiation but not a bone scan.

    the bloody noses are crazy bad but my dose is remaining the same and i just assume tough through it at this point; just 4 more to go.

    The surgeon told me after taxol I have 1-3 weeks to get my platlet count up and get the port out so radiation can start.

    Sawyer


  • Deaconlady
    Deaconlady Member Posts: 86
    edited March 2016

    I looked in our area but don't see a LGFG class. I'm pretty fortunate in that I haven't lost any hair yet, but I keep wondering when??? I have #5 Thursday. I'm still working full time and doing ok. Just a lot more tired than usual. I'm really blessed though. My friends have been fixing meals for so my freezer overfloweth! Smile

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42
    edited March 2016

    Thanks ladies for the feedback on the nausea/vomiting.....I am better today so hopefully a bug passing in the night!

    Ladyhumps-Like Sawyer I have the same weekly visits with doctor prior to infusion and Sawyer good to know on the 1-3 weeks to get port out......Deaconlady.......so happy you still have your hair and a full freezer...life's blessings for sure!


  • ladyhumps
    ladyhumps Member Posts: 56
    edited March 2016

    Deaconlady I hope you get to attend one of the sessions sometime. So worth it. If you don't mind saying, what part of NC are you in? I'm in the mountains near Asheville.

    Sawyer I meant to say earlier that I felt pressure on my left big toe even when I just had socks on. I cut my toenails over the weekend thinking maybe they were too long but then I also thought they weren't really. Anyway, just noticed after my shower tonight my toenail is turning black. Haven't had any fingernail issues. yet. I hope I'm not mistaken but I believe I read that you should lose the weight after you stop getting the steroids. I've gained a little myself now. Certainly didn't need to. I feel bloated a lot.

    Hope everyone gets a good night's sleep. #8 tomorrow!!

  • Deaconlady
    Deaconlady Member Posts: 86
    edited March 2016

    Thanks ladyhumps. I'm in Winston-Salem.

  • kymberly
    kymberly Member Posts: 15
    edited March 2016

    I'm a newbie - what's AC?

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