AC+T SEs

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  • live_deliciously
    live_deliciously Member Posts: 346
    edited May 2015

    i just had dose dense taxol #3. wanted to share my side effects so far on taxol. after dose dense a/c taxol overall was easier. I had some hair growth after taxol #1 I suppose from being done with a/c. But around taxol infusion 2 I started losing more hair and no more new growth. I also went through losing taste buds and bad sense of smells again. Wasn't as bad as first infusion of a/c but maybe I'm just used to it by now. I havent experienced any nausea on taxol. Bone and muscle pain was extreme on first taxol dose. Did not experience much on a/c and have taken neulasta after ea infusion both a/c and taxol. 2nd taxol had way less intense bone pain but lasted about 10 days.So really think it's a combination of taxol and neulasta or just a taxol thing. Vision is still as bad or worse on taxol. No severe constipation but it wasnt normal either. I did take miralax. Energy was better after first taxol. started losing energy on taxol #2. Way more mood swings on taxol. Had a period on taxol and one on a/c so far sore nails but no real issues there. Dry skin went away on taxol and no mouth sores. Gained more weight which I attribute to doubling the steroid dose on taxol. Hungry all the time. Had issues with veins hardening left over from a/c. I confirmed I will not get neulasta at my last infusion. Hope this helps those yet to go thru.

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited May 2015

    Thanks for posting, live deliciously! I'm on my last AC so taxol is definitely o my mind!

  • Supernannymom
    Supernannymom Member Posts: 50
    edited May 2015

    Hi All,

    I have been away for too long!!! I have been so sick - and I couldn't even look at the computer!

    I after a few hospital stays, blood clots and a pulmonary embolism...I am finally done with AC. I had a horrible time on AC, I had nausea until day 10...no puking but a ton of dry heaves. My eyes have been watery and blurry - MO said due to the fluid retention of the steroids.

    I start Taxol this next week, and I am really worried about it. I am doing 4 rounds of dose dense. I was so sick on AC, that although Taxol isn't supposed to be as bad, I am worried. My MO tells me that I "didn't read the book" because my body doesn't have the 'normal' reaction to the chemo drugs...whatever that means!

    I have gained weight too - UGH!!! I am not hungry all the time, but I am retaining fluid...I look like a bald swollen watermelon!!!

    So any insight out there on Taxol? I am really afraid, especially since my AC experience was so bad. I will certainly be taking some Ativan before I head to the infustion center. They will medicate me with a ton of stuff (steroids, benedryl, ect) before the Taxol.

    Also, I hate things on my head!!! I have a ton of cute caps and scarves...but I am hot all the time - I don't want anything on my head!!! My head looks like a peach at the moment...but I am sure I will go shiny bald again on Taxol!!!

    How is everyone out there doing?


  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited May 2015

    Super, I'm having nasty nausea for more than 10 days too! Sorry you have been so sick, that's terrible. Do you have any tricks for nausea?

  • live_deliciously
    live_deliciously Member Posts: 346
    edited May 2015

    hi super nanny mom. So sorry for all you've been thru. Pls see my earlier post one earlier than your last post that shares mY taxol dense dose experience. I wonder If they would consider weekly taxol for you instead of dense dose. I hear its easier than dense dose and it sounds like you could use easier right now.

  • rleepac
    rleepac Member Posts: 755
    edited May 2015

    I'm on weekly Taxol and headed in for 5 of 12 this Thurs. So far it's been much easier than AC. I do have significant fatigue and I'm down to working 2 days a week. I have constant nausea but it's not severe and usually resolves with compazine or zofran. I also get Herceptin weekly and Perjeta every 3 weeks. Biggest problem is diarrhea and even that is managed with immodium. Every now and then I get some bone pain but I have no idea which drug is causing that.

    My hemoglobin is low at 8.9 and if it drops below 8 I'll need a blood transfusion. But the MO thinks it is residual effect of the AC bone marrow suppression and he is hoping it will plateau and then come back on its own. We'll see...

    Eyebrows are almost gone but I'm getting a good amount of re-growth on my head. Other than the eyebrows (and some lashes) I haven't noticed any new hair loss from the Taxol.

    Bekah

  • KBeee
    KBeee Member Posts: 5,109
    edited May 2015

    Those of you who have had a few doses of Taxol, how have your blood levels been? Have WBCs, RBC, platelets, neutrophils and hemoglibin continued to drop, or have things leveled off or improved? I had my first Taxol of 12 today, and so far, so good. Just wondering what to expect as far as blood levels. I had a neutropenic fever on TC when I did not get neulasta, so not getting anything with Taxol (unless I need neupogen)makes me nervous.

  • rleepac
    rleepac Member Posts: 755
    edited May 2015

    All of my counts have steadily declined since starting Taxol

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited May 2015

    So I know Neulasta can have significant side effects of its own, such as other cancers. My MO said the chances were less than 1%, which still doesn't make me feel great, but he didn't seem worried. Is that why they are so reluctant to continue neulasta or neupogen during taxol after AC? It seems like your blood counts still takes a significant hit....

  • KBeee
    KBeee Member Posts: 5,109
    edited May 2015

    Neulasta is only given during dose dense Taxol because chemo cannot be given until 14 days after injection. MO said most people do not need Neupogen during weekly Taxol, so, it'll be given only if needed. This avoids its side effects. I had neutropenic fever durng TC, so it is something I am concerned about. I think my MO will be on top of it, and if my counts seem to be dropping, I will come in for neupogen shots. I saw different MO yesterday, so I did not ask about it. I was just wondering if others had drops. My hemoglobin did a freefall too this week. Hoping that does not continue.

    Becca, have you needed neupogen shots

  • Trvler
    Trvler Member Posts: 3,159
    edited May 2015

    Super: I am sooo sorry you had such a bad experience on AC. I am also curious why they are not doing Taxol weekly? There is a weekly Taxol thread you might want to take a look at. I pray it is easier on you than AC.

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited May 2015

    kbeee

    glad you got one taxol under your belt already. I am having my last AC today and will start taxol in 2 weeks...hope taxol will be good to you

  • Supernannymom
    Supernannymom Member Posts: 50
    edited May 2015

    Hi Littleblue....They did a few things for me on AC, they gave me Aloxi which covered nausea for the first 3 days and then the steady regimen of zofran, ativan and compazine. They also brought me back in on two days following the infusion for hydration and a drug called reglan. It seemed to work - I found that staying on the anti nausea meds really helped - they also gave me the dissolvable zofran because my MO thought that my system was so 'irritated' that it wasn't digesting the anti nausea meds anyway. I hope that helps!

    Hi live-deliciously! My MO said that she wants to try the dose dense, and if it is too much she will go to weekly. Her goal is to get me through and off chemo ASAP. She said that she thinks the side effects of the weekly could be a bit worse than the dose dense because they are every week - but she said it does depend on the person.

    Trvlr - Thank you! My MO thinks I may tolerate Taxol just fine...I am not so convinced. She did say I can always go to weekly if needed.

    I am still on neulasta shots. I haven't had many side effects from those except for an achy back for a few days (in the small of my back). I will have to continue on Neulasta while on d/d taxol. I will keep you posted as to how the Taxol affects me. I have infusion on Thursday. I will say. after my first AC I came home and threw up for 5 hours, even with anti-nausea meds. So I am hoping that mild nausea will be the extent!



  • StefLove
    StefLove Member Posts: 322
    edited May 2015

    Super, I'm doing dose dense Taxol after I'm done with dose dense AC as well. Not sure why we get to enjoy dose dense for both treatments while others have their Taxol spread out. I'll ask on Thursday when I see my MO and go for AC #2. Hope Taxol treats you better than AC! <3

  • Kicks
    Kicks Member Posts: 4,131
    edited May 2015

    I did Neulasta for neoadjuvant DD A/C and originally was told might do it for the weekly Taxol. Didn't as Dr said as high as all my blood counts stayed - no reason at all to do it. The only issue I had with a low count on Taxol was 1/2 through, K (potassium) plummeted. It took mega doses to keep it close to 'normal' throughout. I still have issue, 5+ yrs later, keeping K up to normal.

  • live_deliciously
    live_deliciously Member Posts: 346
    edited May 2015

    thanks kicks for posting. Its a breath of fresh air to hear from the survivors years out. Gives us hope that all these treatments are really going to make a difference.

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited May 2015

    Thanks for the info Kbeee!

  • Meadow
    Meadow Member Posts: 2,007
    edited May 2015

    I did get neulasta during dose dense AC and Taxol both, like Kicks above

  • KBeee
    KBeee Member Posts: 5,109
    edited May 2015

    For those of you who have finished AC, did you have a post treatment echo or MUGA scan? I know they do one before treatment, but do they do one afterwards as well? I am wondering if I should ask about that. I am curious to see if there are any changes, though I know the effects. can occur years later

  • Angiel
    Angiel Member Posts: 223
    edited May 2015

    Kbee I finished AC in March and didn't get a post treatment echo or MUGA scan. I'm on to Taxol now and it is so much easier. My blood counts tend to go up and down week by week but never drop low enough to miss a treatment. Funny enough, my counts were the highest they've been yesterday at chemo since starting (11 treatments). Nurse asked if I did anything differently...I said I ate at Fogo de Chao on Saturday night and had countless plates of meat in an effort to get more protein.....Hmmmm? My neutrophil count was more than double it's normal count! Anyway, I had been a vegetarian for the last 7 years prior to my diagnosis but since treatment started, I had begun to crave meat, so I went with it figuring my body was trying to tell me something. Crazy!

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited May 2015

    Angiel...yes, you do need the extra protein! This is the big thing I see women not doing during chemo and beyond.
    You need the protein to rebuild. Expect this to go on for at least a year post chemo.

    I am just a bit more than 5 years post treatment and all is good with my life. Because I was on a clinical trial, I did SIX dose dense of both AC and T. Because I also did Neulasta, I never had any problems with blood counts. My hemoglobin did go down towards the end of AC, but climbed back up to the low normal range at the end of Taxol. For whatever reason, I didn't have much nausea and didn't take any special anti-nausea meds. I needed a lot of water during AC, but normal during Taxol. I ate almost normally throughout, but craved salty towards the end of AC.

    I did need OTC pain relief during this period, especially for cycling. I also needed during my 5 years of AIs for cycling. So nice to be done now with everything.

    As I can now cycle up hills I could never do before in my entire life, I am not worried about heart function.

    I will be having a comprehensive physical in about 3 months to get checked out, and will use as a post treatment baseline. I assume I am just fine.

    One thing I will mention is about a year post treatment to make sure you get a good hair style and makeup consult. Because things do change, and it's nice to have a fresh look. My hair is now chic (as opposed to unruly) and I also do the makeup better than ever. I am fit and trim. So I do look great.

    Which brings me to exercise.....essential for a complete recovery and the most important thing we can do for ourselves during and post treatment.

    Good luck everyone. I found chemo not at all a fun time, but hardly the end of the world. Life does go on, and we layer on new experiences. I am so very grateful to be here....even more grateful to have a full and wonderful life. - Claire

  • Trvler
    Trvler Member Posts: 3,159
    edited May 2015

    Thanks for posting, Claire. So happy to hear how well you are doing. I agree about the exercise. SO praying I can still do it when I am through this.

  • SC_Coqui
    SC_Coqui Member Posts: 133
    edited May 2015

    Regarding weekly Taxol, this is a very recent thing. I believe started last year after a study showed that doing Taxol on a weekly basis had just as good if not greater benefits than doing it every three weeks or every other weeks at higher doses and the side effects were minimized.

    I just did dose #4, I'm exhausted And my stomach hurts. But I feel better than being in AC. I just bought some B6 and Glutamine tablets. Hopefully they'll help. Anyone know recommended doses?

  • KBeee
    KBeee Member Posts: 5,109
    edited May 2015

    L Glutamine is 10g 3 times per day if I remember correctly. B6...hmmmm...whatever bottle I happened to grab at the pharmacy...I take one of them per day. Hopefully someone else has better guidance on that one!

  • Kicks
    Kicks Member Posts: 4,131
    edited May 2015

    SC_Coqui - weekly Taxol is not a very recent thing started the last year. I did 12 weekly Taxol 5 1/2 yrs ago.

    For me, 4 DD A/C neoadjuvant was easy - 12 weekly Taxol adjuvant was not. We are each different and unique.

  • live_deliciously
    live_deliciously Member Posts: 346
    edited June 2015

    had last did taxol today. Dr reduced by 25% due to neurothopy in right foot. I couldn't make the decision to reduce or not for fear I wouldn't be protected as Much as I could so I let her decide. Not like me but I wanted her expertise . She said I had plenty chemo in my system and wouldn't be concerned. Glad to be done but still can't help but be blue that I'm not "protected" under the chemo shield so to speak . on to rads in a month.

  • SC_Coqui
    SC_Coqui Member Posts: 133
    edited June 2015

    On the weekly taxol, I guess the study was recent, sounds lIke the dosing wasn't. From what I read, it wasn't something commonly given on a weekly basis until the study results showed that the lower weekly dose was just as effective without the harsh side effects. My MIL received it every two weeks.

    Anyway, so far so good on the side effects. The worse one for me is constipation. I'm so DONE with that!

  • KBeee
    KBeee Member Posts: 5,109
    edited June 2015

    livedeliciously, The total dose of weekly Taxol ends up being a few extra whole doses of total Taxol from those doing dose dense... so even with a reduction, you will still be getting plenty!

    SC, Taxol has treated me well so far too. Easy to say now since I just had #2 today, but I will assume it'll do well until proven otherwise. Just hoping my hemoglobin stops its current freefall

  • rleepac
    rleepac Member Posts: 755
    edited June 2015

    My Hgb was taking a free fall too but MO said it was residual bone marrow suppression from the AC and it should stabilize and make a comeback. I'll know better Thur if it's plateauing or continuing to drop

  • Kicks
    Kicks Member Posts: 4,131
    edited June 2015

    'More or less' as I was told - weekly keeps the levels consistant, 2 or 3 weeks puts a lot and n at a time but the s not consistant for levels over the weeks.

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