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Weekly Taxol group

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Comments

  • shelabela
    shelabela Member Posts: 327
    edited April 2017

    I had buzzed me hair because I have very thick hair it was coming out in huge amounts. It was easier then watching it come out. I have 1 more week to go in Taxol then I start AC. I have had a variety of side effects. Ranging from : a horrible rash on my face, loss of hair, body aches for 3-4 days after, lifting of my nails, Fatigue, mild nausea, headaches, blurred vision, I had a very mild neuropathy for 1 week. Went away 4 days after that treatment,

    I have worked the whole 12 weeks, except for treatment days

    I did not use ice during or after any treatments. I can't stand cold. There is no way I could of done that.

    I start AC on May 1 and I am worried. Hope I handle it as well as I did taxol.

  • vlh
    vlh Member Posts: 773
    edited April 2017

    I'm nearly seven weeks out from my last Taxol and am concerned that my neuropathy hasn't improved at all, especially in my dominant hand. Have any of you had the issue that long, but had it eventually resolve? My MO said they don't consider it permanent until six months, but many of my other symptoms (constant nasal bleeding, racing heart with minor exertion, shortness of breath, etc.) have disappeared or at least improved so it's worrisome. Another problem that is probably related is that my hands and feet still feel so swollen and stiff. My ankles look slender as does the wrist on my non-lymphedema arm do I don't think I'm retaining fluid.

    Balance issues and muscle weakness, especially in my thighs, continue; however, I'm hopeful those problems will dissipate as I become more active. With the racing heart and breathing issues, I was a semi-invalid for months so know that regaining strength & endurance will take time..

    For those of you still undergoing treatment, I hope your week is free of side effects!

    Lyn

  • shelabela
    shelabela Member Posts: 327
    edited April 2017

    Yay! I finished my 12th Taxol! So glad to be done with those. Now I am moving on to AC. I am hearing that is harder. I sure hope not, but bring it on!

  • Taco1946
    Taco1946 Member Posts: 630
    edited April 2017

    VLH - my very painful neuropathy went away about 10 days post 8 doses pf taxol. I was also given gabapentin - first by my MO and doubled by my neurologist when he saw my hands. I'm now five weeks post taxol. Have my second dose of just herceptin Friday. Still no hair and nose is more bloody and muscus filled than I would like it to be but is also a very bad allergy season here too. Other SEs are gone, including the constipation, which has occasionally been a problem for me in the past. Back to golf and have started a "stretch and relax" class. Had brachytherapy before chemo and saw my RO today. I had some radiation recall after I started chemo and that breast is still tender but not painful. He said the radiation site may always be a little red - not a bid deal to either of us. Good luck. Seems as if you shouldn't still be so uncomfortable.


  • danix5
    danix5 Member Posts: 141
    edited April 2017

    I finished #9 of 12, Taxol and herceptin on Wednesday. I've had a pretty uneventful 9 sessions expect for fatigue.

    Last night started a cycle of vomiting and D! Like all night and pretty bad ... I have anti nausea patch on now but still sick. Anyone have this start so late in treatment????

  • vlh
    vlh Member Posts: 773
    edited April 2017

    Danix5, I didn't vomit at all during Taxol. I wonder if you could have eaten something problematic and your suppressed immune system is struggling to cope? With the weekend on the horizon, I hope you'll contact the doctor for guidance and that you feel better soon.

    Taco, the bloody nasal issues I had throughout my Taxol cleared up at the end of week 3 (I think) post-treatment. I've not been prescribed gabapentin to date. I take Lyrica for severe Fibromyalgia, typically at night. I'm well below my allowed dose so may add it during the day to see if that helps before adding something new to the drug mix. What was the appearance of your hands or was it a loss of function the neurologist observed? I'm not familiar with radiation recall.

    Congrats, shelabela! Unfortunately, I found AC more difficult, but everyone is different. At least it's not every week so you get a little respite between infusions. Good luck!


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

    I am a couple of weeks out from starting 12 weeks of Taxol. I would like to ask you guys a question

    Right now I am doing AC every other week. I have chemo and then on days 3-5 I feel the worst, then get better and better just in time for next AC cycle.

    When moving to Taxol on a weekly basis, is there a recovery before the next Taxol? Or is it 12 weeks of having queasy days?

    Thanks

  • tinker-bell
    tinker-bell Member Posts: 40
    edited April 2017

    Congrats Shelabela! Good luck for the next stage, I hope it is easier for you.

    VLH, I've had a 1 week chemo holiday (skip one weekly infusion after 6 infusions) now on day 10 and still have neuropathy symptoms although I think they are lessening slightly. Everyone seems to be affected differently but it really bothers me I must say. Anyone on here try l-glutamine?

  • vlh
    vlh Member Posts: 773
    edited April 2017

    DodgersGirl, nausea tends to be less of an issue on Taxol for most of us so it's unlikely that you'll have 12 weeks of an upset stomach. Bone / muscle pain and neuropathy are the main side effects my oncologist mentioned and she offered a prescription for pain pills to help. Good luck!

    Lyn

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

    thank you Lyn

  • bareclaws
    bareclaws Member Posts: 246
    edited April 2017

    DodgersGirl, I had AC and am now on third week of Taxol, plus Herceptin. No nausea to speak of and just generally easier than AC. Don't fear it.

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

    bareclaws- thank you for the info

  • shelabela
    shelabela Member Posts: 327
    edited April 2017

    bearclaws, how is the back/bone pain? Did you get a pillow?

    Dodgersgirl, the nausea was not that bad wth Taxol, like someone else said bone pain, bloody nose, and neuropathy (I had very little) are the worst side effects

  • shelabela
    shelabela Member Posts: 327
    edited April 2017

    bearclaws, how is the back/bone pain? Did you get a pillow?

    Dodgersgirl, the nausea was not that bad wth Taxol, like someone else said bone pain, bloody nose, and neuropathy (I had very little) are the worst side effects

  • Poodlelover
    Poodlelover Member Posts: 15
    edited April 2017

    I have completed 7 taxol treatments and have had very few mild side effects aside from hair loss which I buzzed off when it started after treatment #3. I still work full time, go the the gym a few times a week, and pretty much have kept up my usual activities.

    I too will do AC after this so shelabela I will be interested to hear about the next steps as you start that. Good luck!

  • bareclaws
    bareclaws Member Posts: 246
    edited April 2017

    Shelabela, the back pain tends to get worse as the week progresses, and the infusion pre-meds wear off. I've been taking my vape pen to bed with me at night for when I wake up at 2 and can't get comfortable again. Pillow didn't really help that much. Change of position doesn't help. Weed helps.

  • shelabela
    shelabela Member Posts: 327
    edited April 2017

    bearclaws, we do what have to! Glad something is helping.

    Poodlelover, I will be sure to update after first treatment

  • tonyaberryman
    tonyaberryman Member Posts: 37
    edited April 2017

    So happy to hear very little SE from Taxol, I'll start those after my AC. I have 2 more of those, 3rd one on Monday........ can't wait to be finished with those. Worse SE's from AC is, no appetite, everything tasting like mush, fatigue and mouth sores, but it could be worse I'm sure. Hoping y'all have a great Saturday!

  • bravepoint
    bravepoint Member Posts: 232
    edited April 2017

    tonyaberryman - You still won't have much sense of taste while on Taxol or at least i didn't. I'm 6 weeks PFC and my taste buds aren't back to normal.

  • shelabela
    shelabela Member Posts: 327
    edited April 2017

    I agree no taste with Taxol either.

  • tonyaberryman
    tonyaberryman Member Posts: 37
    edited April 2017

    Ahhhh the joys of having cancer, lol

  • cdv4251992
    cdv4251992 Member Posts: 110
    edited April 2017
    I'll be starting my weekly Taxol/Herceptin on 5/4. The chemo nurse basically told me to expect very few if any side effects and nothing compared to the treatment I had last time. She also said she doubted my hair would fall out at all. I'm not sure how she decided that. How realistic is that? I've been through the hair loss before so I know how to handle it. I want to know for my kids. They were very young last time and don't really remember any of it (thank goodness). This time around I have high school graduation and all the festivities and ceremonies to go to, other end of the school year programs, and a parent/student college orientation weekend. I am not a wig person, learned that last time, but I'd like to get some scarves and hats to have on hand. At the same time, I don't want to waste money if I won't need them.
  • shelabela
    shelabela Member Posts: 327
    edited April 2017

    cdv,

    I had 12 weeks of Taxol and my hair was shedding so bad I had bald spots every where. I finally decided to buzz it. I hope for you that you don't. I would wait to buy any, see how you react.

  • tinker-bell
    tinker-bell Member Posts: 40
    edited May 2017

    Hi everyone!

    I'm looking for some guidance from PFC people on how long it takes Taxol to wear off. I have had 12 days off and although it's not constant, I still have neuropathy (pains in hands and feet plus pins and needles) muscle spasms and body aches. I'm about to start #7 in two days.

    VLH have yours improved?

    Thank you

  • PatinMN
    PatinMN Member Posts: 784
    edited May 2017

    tinker-bell, I think you asked earlier about l-glutamine. I used it during my weekly taxol/herceptin infusions. I never had any pain - more pins and needles that came and went. I assume that the l-glutamine helped me, but it's hard to say for sure because apparently some people don't have neuropathy problems at all with taxol. Per my chemo nurse's suggestion, I took 30 grams of l-glutamine (15 grams morning and evening, mixed in a liquid of your choice), on the day of chemo and 3 subsequent days. I also took 100 mg of vitamin B6 daily. My chemo nurse suggested continuing the l-glutamine for a few weeks after finishing chemo, but I ran out after my last chemo's 4 days use, and didn't buy any more. I ended up with a numb big toe about 3 weeks later. (It eventually cleared up.) So if you do start l-glutamine, be sure to continue using it for 3-4 weeks after finishing your taxol treatments.

  • Bmac16
    Bmac16 Member Posts: 29
    edited May 2017

    I'm glad to have found this group as I start weekly Taxol on Wednesday this week.

    I completed 4 rounds of A/C with manageable side effects. Hoping the Taxol goes well, a little daunted at the thought of weekly visits to the infusion room!

    I will get Decadron, Benadryl and another anti histamine before the Taxol.

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

    BMac16- please post what you learn as you start Taxol. I have #3 AC Wednesday followed by last AC on 5/17/17 then will start weekly Taxol so am following this helpful group.

    Wish you minimal SE

  • bareclaws
    bareclaws Member Posts: 246
    edited May 2017

    Ugh. I had third weekly Taxol Friday and the expected steroid crash Sunday evening and Monday. Monday night the bone sensations start. I can't really call it pain. Just uncomfortable, can't find a position that feels good, you know? I haven't taken any drugs for it, because I'm terrified of taking more pharmaceuticals. Some minor gut issues, too. Enough complaining. Gotta get the gear on and try to run a bit this morning. I'd take the day off but that's a slippery slope.

  • castigame
    castigame Member Posts: 336
    edited May 2017

    Shebella,

    I am just done w 4DD AC today. Just turned 47. It was tolerable enough for me except neulasta.


    Minor swelling, no flushing, minimal rash, any GI trouble was due to steroid I took, lost about 10 pounds. My trouble was neulasta which gave me excruciating back pain for two full days. Day 3 and 4. Tried few stuff such as icy hot, heating pad and epsom salt scrub. Epsom salt came out to be winner. Made a plenty of scrub to plaster all over. I felt like I was 5 playing w sand. Sit on a chair while waiting. Leave it on as long as you could. soak your feet using any leftover salt. Rinse. This scrub made the pain dull. Also, helped spliting claritin dosage to halves. Claritin has fatigue, headache and blurry vision. Oh did I mention my beautiful exfoliated and moiturized skin? Natural sleep aid I say.


    just my two cents. Other than neulasta it is quite doable.



  • Bmac16
    Bmac16 Member Posts: 29
    edited May 2017

    Bareclaws

    I had some joint issues on the AC, as you say, not pain just "awareness/discomfort" and always at night. Not sure if it was the Neulasta. I took an ibuprofen (with MO's approval) and it helped.