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Weekly Taxol group

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Comments

  • vl22
    vl22 Member Posts: 471
    edited January 2018

    How is it that we have the same SE’s? I finished Taxol two weeks ago. My right shoulder has been hurting for over a week. Sometimes it is my entire upper back, my right arm, my hip - the list is endless, but mostly my right shoulder. For me, I think before my muscle aches could get really bad, it would be time for another Taxol, and the premeds would knock out the pain. After the last one the pain has been the worst and I still have it. I’m taking ibuprofen around the clock. I know I immediately go to worst case scenario, but I really think this is just muscle pain. It’s just so weird that’s for so long it was my right side/rib - like you! Hope yours doesn’t last as long as mine

  • Elfmcg
    Elfmcg Member Posts: 43
    edited January 2018

    thanks VL22, i was only thinking of you too earlier. I should be happy to be finished the chemo but like you, i have myself plagued with worries and scared of the planning scan, but at the same time, i think it could all be a mix of muscle aches and gas! Ugh, i hope this gets easier!

  • rdeesides
    rdeesides Member Posts: 233
    edited January 2018

    VL22, I also got pains after my last treatment. So weird I was fine the whole way through but got pain PFC. So glad this part is over.


  • proudtospin
    proudtospin Member Posts: 4,671
    edited January 2018

    well morning from snow bound nj. Taxal workend for, me for one good scan, now onto a pil form of chemo called capecitabine, i take 4 pills in am then 4 pills after dinner, taxal took my hair but it is now growing back,

    Have not seen talk of this cute pill and looking for reactions? Note, my doc does scans every 3 months and blood tests in between

  • nonahope
    nonahope Member Posts: 695
    edited January 2018

    Elfmcg...I have left shoulder pain occasionally. But, I fell on my shoulder years ago. So, I don't know if I can blame the Taxol. I do have a lot of join pain from Taxol, but notice it constantly. The more I move around, the less the pain.

    Iris...I'm so sorry the Taxol didn't work for you. I had my 6th Taxol infusion today. I have very minimal side effects...other than loss of hair etc. I did have a scare a few weeks ago when my liver enzymes shot up like crazy. Had to have a liver US. All turned out fine -- not even a gallstone. However, the Taxol does raise the liver enzymes. The past couple weeks mine have come way down -- not quite in the normal range...but close. I've been eating lots of salads on a daily basis, and have been trying to buy organic foods as much as possible.
    I think the drug you are taking is the generic form of Xeloda. There are a lot of gals with Stage 4 cancer that take it. In fact, when I saw the NP today, she mentioned Xeloda as one of the drugs that her patient takes. She said the woman has very high anxiety when she knows she has to take it. So...does it hurt/make you sick or something? Or maybe, she gets it via infusion? I don't really know. Nonetheless, I sure hope it works for you. Hang in there!!

    Dinner time....

    Hope

    .

  • PauletteK
    PauletteK Member Posts: 1,279
    edited January 2018

    I’m checking in, I am post taxol about 8 weeks. I saw some talked about neuropathy. I got so bad with neuropathy I have to stop after #9. I did iced my hands and feet for all three hours taxol infusion, it helped my nails but not neuropathy. I also took B 6 and 12, also L-glutamine. When I ended neuropathy 2/3 of my feet were numb. According to my MO sometime neuropathy can be permanent so he suggested to stop. Now my fingers recovered alsmot 90% but my feet still not there yet.

    I hope my experience can be helpful to you.


  • MissJadoreS
    MissJadoreS Member Posts: 1
    edited January 2018

    Hi, I'm new here and just found this thread. I started Taxol last week and have my next infusion tomorrow. Last week I got Taxol and Carboplatin, the next three weeks just Taxol, then carboplatin and Taxol the 5th week, and so on for the next 11 weeks. My SE were pretty rough on the AC, but manageable after about 4-5 days. Then I'd be okay til my next treatment. This past week on the carboplatin and Taxol has been so hard, I've been so exhausted, I get tired bathing or changing my son's diapers/clothes. I've also been vomiting this week, about 4 times since last Friday (my first treatment). Also had pretty bad diarrhea the first 4-5 days. Nurse told me I could take Immodium for the diarrhea, and I'm on Zofran and Ativan for nausea/vomiting, but it didn't work!! I don't have nausea, but my stomach feels like I have s heavy brick in it 24/7. Also, I've had some pretty severe body aches. I'm not sure if it's from the carboplatin or the Taxol, but I want so badly for this to get easier. I've been in bed or on the couch since last Friday and haven't gone outside. The smallest activities make me tired and weak and I feel out of breath. Does anyone have any advice on how to manage or have similar AS? Just trying to hang in there!

  • PauletteK
    PauletteK Member Posts: 1,279
    edited January 2018

    MissJadore, I had AC and taxol, so I don’t have experience on Carboplatin, for taxol SE will be fatigue and GI problem. I usually take a small nap during taxol, but you should exercise that will give you more energy. Acid reflux is major issue, I took omperazole twice a day to calm my stomach down. Also you want to have something in your stomach so it helps nausea. Normally taxol won’t make you vomit not like AC. Zofran is for nausea if you have diarrhea take Imodium, if it doesn’t work call you MO for something stronger. You do want your MO know what’s going on with you. You don’t want to have diarrhea for too long. Make sure to drink enough water.


  • nonahope
    nonahope Member Posts: 695
    edited January 2018

    Good morning...

    Paulette...So far, no neuropathy here. As for my nails...very dry with many ridges. I mentioned it to my NP yesterday and she suggested I start taking Biotin or Fish Oil. So, I will add one of those to my CVS road trip.

    Miss Jadore...I've never had Carboplatin, so can't help you there. I'm only on Taxol infusions and have very minimal side effects...mostly just a bit of joint achiness for a couple of days. Advil takes care of that. I hope that when you are on "only" Taxol, you will see a big difference. I force myself to drink lots of water every day, but even more so the day before Taxol and the day afterwards....I mean LOTS! I think this really helps.

    I had round 6 of Taxol yesterday....all went well, except the nurse jabbed that needle in my port so fast and when she was putting in the heparin to flush it, the needle popped out of the port and WOW...the burning was intense. It was all ok when I told her and she fixed it. It was nothing to worry about. I really like her, but she is not as gentle as any of the other nurses I've had...I always sigh (to myself) when I see she's the one who will be taking care of me. She's been there 20 years so, she's not a newbie by any means. She really hustles in that chemo room.

    Hope

  • Shay76
    Shay76 Member Posts: 31
    edited January 2018

    Good Morning Nonahope,

    I know your NP suggested it, but I would confirm with your Onc about taking the fish oil during chemo. I've heard you shouldn't because of drug interactions and also making the chemo less effective. There are also conflicting reports that it is safe to take- so I would just go with whatever your Onc says!

  • nonahope
    nonahope Member Posts: 695
    edited January 2018

    Shay...Thanks for the reminder, I used to take fish oil years ago, but stopped. I never felt it did anything for me. She mentioned that both products help with the nails etc. But, suggested the Biotin. I also read that fish oil and chemo are not a good combination. I never take any supplement without first looking up interactions.

    Hope

  • dkk
    dkk Member Posts: 47
    edited January 2018

    Just wondering what your weekly dose of Taxol is.. My DO reduced mine to 130 because of harsh SE and no I am concerned if it is strong enough to kill this Cancer. Just wondering what the normal dose is. I am on 12 weekly cycles. Appreciate your insight.


  • Shay76
    Shay76 Member Posts: 31
    edited January 2018

    Hello DKK,

    That will be difficult to compare, as most doses are determined by body weight, so everyone's dose on here will be different unfortunately.

  • nonahope
    nonahope Member Posts: 695
    edited January 2018

    DKK...I think Shay is correct - the dosage is based on your body weight. My infusion is approximately 1-1/2 hours. Not sure if the time is relative or not.

    Hope

  • Indigo29
    Indigo29 Member Posts: 87
    edited January 2018

    Yes, i think the dosage is on body weight too. My dose was 110 but because of the neuropathy and low neutrophil count , my oncologist decreased the dosage to 90 for taxol 11 and 12

    Nonahope my infusion for taxol was supposed to be for an hour but I used to get the nurse to set the infusion for an hour and a half because I found the that it prevented me from getting headaches.

  • LisaCincy
    LisaCincy Member Posts: 316
    edited January 2018

    I've been battling a terrible virus the last week. My numbers were good enough that I could get my weekly Taxol infusion on Wednesday. I asked the NP what she'd recommend I take for my racking cough, and she recommended Mucinex Cough/Expectorant. She recommended not taking the cold medicines that had "extra" stuff I didn't need, such as acetaminophen. I asked her if taking a cold medicine would be too drying, especially when combined with Taxol which already dehydrates me, and she said no.

    So I took it last night before bedtime, and boy did I regret it. My first clue should have been when it said to take the pill with a full glass of water. I was up all night gulping glass after glass of water because my mouth and sinuses were like the Sahara. Lesson learned: With Taxol, don't take anything that will cause dehydration.

  • simbobby
    simbobby Member Posts: 95
    edited January 2018

    Hey Lisa,

    Me too. Have had the hacking cough for over 5 days and NP recommended Mucinex DM. But when I got to the pharmacy, they had a pill form and a liquid syrup form - so I bought both.

    The liquid worked the best. The pill form was far less effective but I am horribly dry

  • PauletteK
    PauletteK Member Posts: 1,279
    edited January 2018

    Wow, I know taxol dry up your whole body, I didn’t know the reaction combined with Mucine.

    I’m just popping in and see how’s everyone are doing. Also wish everyone have a good weekend,

    Hope, I didn’t take any fish oil nor Biotin during taxol, but my MO said Biolin is okay to me before, I just started to take it after chemo. I’m using OPI cuticle oil maybe you can try some. Just keep in mind, taxol is good to lift up nails.

  • Shay76
    Shay76 Member Posts: 31
    edited January 2018

    I apologize because someone brought this up just recently but I can't find it. It was about l-glutamine supplementation. How much did people use and how often? Also powder or pills?

    Thanks!!



  • PauletteK
    PauletteK Member Posts: 1,279
    edited January 2018

    Shay I bought powder and I took 30 grams a day.


  • gussy
    gussy Member Posts: 77
    edited January 2018

    Hi Hope - the wedding and afterward party went very well. Everyone enjoyed it all. Since then have been diagnosed with atrial fibrillation. Thus the severe SOB. So, my new husband and I have spent 4 of the 6 days of our marriage in Dr.s offices and the hospital where I spent 24 hrs. Yesterday got a cardio version which got HR and BP back to normal. Still not feeling 100% due to extreme sinus congestion which doesn't seem to respond to much of anything and does affect my breathing. The 3rd Taxol will be next Tues. and hoping that it doesn't mess up the HR. We have postponed our trip till Feb. when all of the chemo should be completed and just waiting 4-6 weeks for surgery sometime in March. OMG - I cannot wait for this "thing" to be over. Fortunately, I have the most wonderful, patient and kind man on the planet. I am blessed.

  • bjquilter
    bjquilter Member Posts: 23
    edited January 2018

    Hi Everyone,

    I have just finished taxol #10. The neuropathy started at #8 but wasn't too bad. Now I feel it in my feet when I try to walk. I have to admit the SEs are getting much worse and I'm having many more bad days than good. The fatigue and skin sensitivity are overwhelming. I'm so worn out. I know I will get through this.

    I have had problems with my port flipping over so it was wrong side up. Thursday I had a procedure to correct it but now I think things are worse. The Dr anchored the port back in and said it's ready to use. The next day I noticed the port is directly under the incisions(old & new) and the area is covered with surgical glue. I'm so mad because the glue will prevent the lidocaine from working and interfere with the needle. I don't know what they'll do but it will make my sessions longer. I think I'll have them just use an IV. This "little" problem has really upset me.

    Btw does anyone else think their feet have gotten bigger? I noticed since my 4th treatment my shoes are too small lengthwise. These are shoes that are well broken in and are now too small.

    Thanks for understanding.

  • cbk
    cbk Member Posts: 323
    edited January 2018

    BJQuilter- I think what you are going through with fatigue is super normal at this juncture. Believe me, I felt the same exact way; difficulty walking the dog, taking the stairs, any minimal exertion was tough after Taxol 8. I felt so good in beginning of Taxol that it really hit me hard when I slammed into thefatigue wall! It’s going to get better!

    Sorry I didn’t have a port so can’t help you with any of those issues. Everyone thought I was nuts, but I didn’t want one!

    And yes, on the shoes! Ha! But I gained a lot of weight on taxol, so I chalked it up to that! Or that I was retaining water in my feet from steroids, although my feet never looked swollen.

    Try not to get too down, you are almost there! Honestly I know exactly how you are feeling in fatigue department! It does get better. Taxol to me was tougher than A/C, in some ways.

  • missmelissa90
    missmelissa90 Member Posts: 23
    edited January 2018

    Happy New Year!

    Gussy- I'm so sorry about having to postpone your honeymoon. We had to post-pone our 20th anniversary trip to Paris due to my prognosis and I feel your frustration, but I keep that trip as my focus point when things get tough and I need something to look forward to!

    I wanted to follow-up with Mucki1991, frozentoes, CIW and bjquilter about the eye issues. After my second Taxol treatment I developed an intermittent twitch in my left eye and one night I saw halos around all the lights I looked at, but that has gone away. I feel that my eyesight has degenerated to the point that I am having a hard time reading! I already wear glasses and I'm wondering if anyone else has experienced a similar impact on their vision? I haven't come across any literature that states that Taxol impacts your eyesight and I'm wondering if it is due more to the overall dehydration? I've been trying to drink lots of water, but now I'm thinking that isn't enough and I should try to use eyedrops too. I'm due to see my MO next Friday and will definitely ask him about it.

    Also, jumping into the hair update, I started my Taxol completely bald due to my AC treatment but now at treatment #3 of Taxol I have a white downy fuzz on my head, but my eyebrows and eyelashes are starting to fall out! I am bummed as I was hoping that it wouldn't happen....I'm trying to baby my eyelashes and so no more eyeliner. I have blonde hair and light colored eyebrows, so at least it isn't as noticeable. Anyone post Taxol have an estimated time of when they might grow back?

  • gussy
    gussy Member Posts: 77
    edited January 2018

    Hi Melissa - your hair status about the same as mine - bald with fuzz, maybe two eyelashes and some eyebrows. What I do makeup wise is put on a fairly wide streak of eyeliner in a medium brown (I'm "blonde" too) and it really makes a difference. I've seen pictures of my wedding and it really doesn't look like I don't have lashes. I wasn't an eyeliner user before but I sure am now and it gets better with practice. It's the other taxol issues I have that are driving me nuts. Two more to go (dose dense though) so hope it doesn't get much worse.

  • nonahope
    nonahope Member Posts: 695
    edited January 2018

    Lisa...Hope you're feeling better!

    Sim..Oh no! You're coughing too!! Hope you are on the mend.

    Paulette...I started taking the Biotin. I had a crazy dream last night that I woke up with a head full of hair and my nails were long and beautiful -- which they've never been in my life...LOL Ahhh...it was only a dream!!
    I'm using some kind of cuticle ointment. I'll have to look for the OPI oil. I know I've seen it at my hairdresser's -- when I used to go, that is!!

    Gussy...I'm so sorry for all the issues you've had going on. February is right around the corner. Something to really look forward to. Keeping you in my thoughts and sending healthy vibes your way that nothing gets in the way!

    bjquilter...I would be so frustrated about the port. I sure hope all goes well and it doesn't interfere with your infusion. I just had Taxol #6 -- my feet are the same size. Maybe, yours were swollen? I know that's a side effect of Taxol.

    Wishing minimal side effects for all those with upcoming infusions. Next Thursday is my "off" week...yippee!!

    Hope

  • sammi2006
    sammi2006 Member Posts: 48
    edited January 2018

    missmelissa-I was just discussing the eyesight issue with my nurse when I was getting my infusion yesterday. She told me that it is normal for eyesight to change during this, especially if you get really dry eyes, but that it should clear up after treatment. I asked when would be a good time to go to the eye doctor and she told me usually a few weeks after the last infusion is a good time.


  • PauletteK
    PauletteK Member Posts: 1,279
    edited January 2018

    miss Melissa regarding the eye problem I saw someone had this problem previously but I can’t remember where I read it, could be from cherry at August thread. I had dry eyes issue during taxol so I used eyes drops. Also people use warm towels put on top of your eyes I did that also. I learned that from my eyes doctor.

    Regarding neuropathy, once you have numbness on your feet, please be careful because you might lose of balance. This is from my MO warning to me, couple of the ladies falls in July chemo thread. Also inform your MO once you started your neuropathy. As I said before neuropathy could be temporary and could be a permanent issue.

    If your shoes became smaller, have you think about you are retaining water? This is one of taxol SE. if you do you need to inform your MO. Because could be kidney problem, many people have UTI during taxol I took cranberry pill and drunk cranberry juice to stay away from UTI.

    Wish all of you keep SE at the bay.


  • CIW
    CIW Member Posts: 57
    edited January 2018

    missmelissa-

    The eyesight and taxol stuff is so weird. I still have ptosis (drooping) in my left eye from it. I am so glad my CT scan came back clear, because it was seriously freaking me out. I guess even though eye problems aren't typical with taxol it is a drug that affects your nervous system and anything that affects your nervous system can create a whole host of odd symptoms. My oncologist thinks that even though the ptosis is not a normal symptom it's more than likely the taxol. Your vision problems sound odd too. I got very blurred/worsening vision with AC, but not so much taxol. Who knows? AC was MUCH harder for me, but I will say my symptoms with taxol are much weirder.

    In response to everyone about the hair-

    I have a soft, blonde down now too and my eyebrows and eyelashes are nearly gone now. I have nicknamed them "byebrows" (since they're going bye bye) and "die-lashes."

    Did anyone else have to get their taxol dose reduced? They reduced mine this week (infusion 8) due to neuropathy. Did the reduced dose make a difference in symptoms for anyone?

    On an exciting note: I passed the NCLEX on Thursday and am officially a registered nurse! Take that breast cancer--you can't stop me :-).

  • Indigo29
    Indigo29 Member Posts: 87
    edited January 2018

    CIW, I had my taxol dose reduced from 110 to 90 for infusions 11 and 12 due to neuropathy and low neutrophil count and it really helped . The neuropathy didn't get any worse and my counts didn't increase but at least they didn't get any lower and in general I just felt better then I had in weeks

    Congratulations on being certified, that is awesome!

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