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Weekly Taxol group

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  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited February 2013

    I talked to my onc about taxol today as I start 12 tx on March 1. She told me not to do any work with my hands the day after treatment. She told me to go ahead and start the vitamin B6 now to get it into my system, and to have someone else wash dishes or for me to at least wear gloves while working in water.



    I'm so grateful to all of you on this thread. Thanks for all your advice & encouragement.



    Blessings

    Paula

  • bcfree2013
    bcfree2013 Member Posts: 19
    edited February 2013

    Just a quick question: are you able to drive and do grocery shopping during the weekly t treatment?

  • PeggySull
    PeggySull Member Posts: 368
    edited February 2013

    Yes, but if I do that, it's the only thing I have the energy for until the next day.



    Peggy

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    Bcfree2013, I did all normal activities during my weekly taxol treatments, including working and going to the gym (although my workouts were not very strenuous). No problems with driving or grocery shopping. What I've learned from reading everyone else's experiences on this board is that it really affects people very differently. I did not have any other chemo first, and I do think that made a difference for me. Good luck as you start your chemo treatments!

  • Cindi74
    Cindi74 Member Posts: 69
    edited February 2013

    Celinerlower  Two more taxol, and then I hope to someday feel normal again.  I felt OK for about 20 hoursafter the last, but then achy, tired, bad taste.  Three days after # 10, knuckles are red, eaw, ichy.  Bad raste. Yuch.  I see the end of this tunnel, but it seems to take forever.  Hangin there all. hugs.  does anyone know how long to get back energy, strength. hair?

  • bcfree2013
    bcfree2013 Member Posts: 19
    edited February 2013

    Peggy and Patinmn, thank you for the responses. The information is really helpful.

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited February 2013

    I'm starting 12 weekly taxol on March 1. Do you lose your taste for the whole 12 weeks, or are there at least a couple days where you can taste something.



    This is day 2 after final AC, and I can tell my decaf iced tea is losing its taste already.



    I don't usually experience that until day 6.



    Blessings

    Paula

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    Soteria, I never lost any taste at all on taxol. Everything tasted the same, although I craved carbs and couldn't eat anything spicy because it caused heartburn. I know some do lost taste, but I don't think it's the whole time.

  • timbek2
    timbek2 Member Posts: 64
    edited February 2013

    I never really lost taste but things didnt taste right sometimes and I had an awful gummy taste in my mouth on certain days. It would come and go. For me sweets tasted too sweet. Not a bad thing. My appetite was good. The worst part is the neuropathy. My fingers are still so sore. Mainly the thumb and index finger. Hang in there. U can do it!!

  • ridergirl
    ridergirl Member Posts: 94
    edited February 2013

    I haven't lost taste completely either but lots of things taste different. I can taste a little bit of spice in things like my spaghetti sauce but mostly I can still taste sweet things so right now i eat way too much junk food just because i can taste it  Frown My tongue feels like it has been burned. Fingers are numb esp. on my left hand thumb and index finger not as bad but the other 3 just useless.  Trying really hard to decide if i should continue with taxol, i'll talk tto my MO Wed at my appt.

  • adagio
    adagio Member Posts: 713
    edited February 2013

    ridergirl - how many taxol have you had? I worry so much about the neuropathy especially since there is no guarantee that it is not permanent. I have only had 2 taxol (I am on dose dense, and am scheduled to have 4 treatments) and I am also considering whether or not to continue - it is a big decision!!

  • mareluna
    mareluna Member Posts: 275
    edited February 2013

    Hi friends. I had surgery on Tuesday. I am home. I am doing okay. I had the box and direct to implant. The foobs look ugly, swollen and scars are so ugly. My port is out. Yayyyy. I am so glad of that. Hope you all are well.

  • politicomama
    politicomama Member Posts: 52
    edited February 2013

    Mareluna glad that you are home.  Hope things get easier as the days go by.  Thinking of you!

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited February 2013

    Politico~how are you doing with the taxol now that you're further along?



    I had my last AC on Friday. My blood counts were half of what the lowest should be. My WBC should be at least 4.5, it was only 2.5. Hemoglobin was low too, but they still gave me the final AC. I don't get Neulasta or neupogin.



    My church family gathered around me to pray about that today. I believe God will supernaturally cause my numbers to go up.



    I did wear a medical mask today, and used lots of hand santitizer.



    Blessings

    Paula

  • politicomama
    politicomama Member Posts: 52
    edited February 2013

    Paula, This was treatment #4 and so far I am doing good.  I even survived the Cosi overnight Friday :) Never used some much hand sanitzer in my life!  My biggest S.E. is bone and joint pain that starts on Saturday and is usually gone by Monday.  I tried Advil and Tylenol both and it didn't make a dent.  I had some vicodin left over from my BMX which helped, but made me sleepy.  I talked to my MO on Thursday and she prescribed Ultram... I've never used (or heard) of it before.  So far I am not impressed, but I'll give it a chance.  My counts are holding stable.  Talk to your nurses about your counts.  I noticed I had a couple of things low this last week and asked.  She really took the time to go over each of them and explain what they meant.  They do look more at neutrophils than actual WBC and RBC.  Glad you were able to make it to church.  We missed today because the boy got sick twice yesterday... we were worried that it was round two of the stomach flu, but he was okay today.  I called Hope's and talked to the manager.  She aploogized and is waiting on me Wednesday.  My MO also said it was okay to use the B6 for neuropathy.  Knock on wood I haven't had any yet, but I have 8 to go still.  If it gives you hope I drove myself there and back on Thursday :)

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited February 2013

    Politico~ultram is a pretty good drug. I took it for years for severe degenerative joint disease. It works with the central nervous system. No side effects and its not habit forming. It's not a narcotic. I hope it works for you.



    I look forward to being able to drive myself to treatment. It only takes me about 20 minutes to get there. My sister took me to my first 3 AC, but she started a job this past week, and so my son took me to this one. He could be back to work by my first taxol which isn't until March 1, but if so, there are plenty of friends and church family willing to do whatever they can.



    Blessings

    Paula

  • PeggySull
    PeggySull Member Posts: 368
    edited February 2013

    I get dose dense taxol tomorrow morning after two weeks and am very constipated.



    Laxatives aren't helping nor is prune juice, etc. drinking lots and lots of water.



    Does anyone know if getting taxol while constipated will do anything but make me more uncomfortable during the infusion and possibly after. It's been four days since I've had a BM.



    Last time I called doc on call he practically spat at me to take more laxatives (not part of breast onc team).



    My blood counts were good on Wednesday when I saw onc and I don't have a fever.



    I know you can't dispense med advice but has anyone gone thru a taxol infusion this constipated.



    Pegg

  • ridergirl
    ridergirl Member Posts: 94
    edited February 2013

    Adagio I have only had one cycle so far, with infusions on day 1 and day 8 and then a week off. Should be starting cycle #2 this coming fri but am supposed to start rads to hips and spine tomorrow (5 days) so i think chemo might get pushed to next week as my MO said she wouldnt make me have both on same day.  And if i'm not scared enough about the rads we're supposed to get freezing rain tomorrow and i have 1 1/2 hr drive to treatment so just something else to worry about. <sigh>

    The neuropathy is sooo scary especially as you said because there is no guarantee it will ever resolve.  If i had any hair left i'd be tearing it out by now..........

  • politicomama
    politicomama Member Posts: 52
    edited February 2013

    Peggy, I would call your MO.  I have had the opposite with Taxol, but had lots of problems with AC.  At first I used Phillips, but they recommended that I switch to Senakot.  

    My eyebrows have been coming out, but I noticed tonight my eye lashes are starting to go....  kept them all through AC.... 

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    Mareluna, congrats on your successful surgery. Wishing you a speedy recovery!



    Peggy, I had primarily constipation during taxol. I wouldn't worry about it for tomorrow, but deal with it when you get home from treatment. My suggestions for what worked for me - Senokot pills and Smooth Move tea. (Don't do them both at once! Try each separately for a couple of days to see if either works for you.)

  • PeggySull
    PeggySull Member Posts: 368
    edited February 2013

    Thank you so much for replying. The first week after taxol I have a lot of bone pain and have to take oxycodone for three days. I pay attn to the constipation issue then but when I'm feeling so much better the second week I tend to lose track until it becomes painful.



    This time I'm going to work on this issue for the entire two weeks. I only have two more taxols to go after tomorrow's infusion. That means 1 month after tomorrow I'll be finished with chemo!!!



    Thanks again for the late night reply. I swear I get so much help from these boards I almost trust them more than some of the docs.



    Peggy



  • politicomama
    politicomama Member Posts: 52
    edited February 2013

    The oxycodone could be contributing too.  Senakot really did help. I had to keep on it for a week to keep things somewhat normal.  Good luck tomorrow. 

  • adagio
    adagio Member Posts: 713
    edited February 2013

    peggysull - I haven't had any consipation during taxol - but during AC (because of anti-nausea meds) I made oat bran and ate it a couple of times a day with a dab of honey and a splash of cream - tastes delicious and works wonders for the bowel movements. I do think it is the meds for the pain (codeine in it) not the taxol that causes the consipation. I take only tylenol and ibuprofen together for the pain and find takes care of the pain quite well. I also take claritin about 12 hours before the neulasta shot and then for about 4 days after that - this helps a lot with bone pain.

  • ridergirl
    ridergirl Member Posts: 94
    edited February 2013

    A combination of the chemo drugs, the anti-nause drugs and any narcotics that we take can all add up to constipation is what I am told by my Drs.  I am on morphine daily and also take senekot every day as well, adjusting the dose of senokot as needed - i take 1 twice daily on a regular basis, up it to 2 twicw daily for about 3 days when i have my chemo, and of course stop it altogether if i get diarrhea.  Takes some experimentation but i've almost got it so i stay pretty regular.  Another thing that my home nurse suggested as a laxative is real maple syrup - about 1/4 cup daily. Just some suggestions hope it helps, the alternative is no fun i know that.

    Just home from my first rads session, was not too bad took about 30 mins with rads to hips and spiine. Seems th hips is a one shot deal so just spine for the rest of the week - took a little while for positioning but tech said it went well and i was in the perfect position so that was good to hear.  Rads to spine are done from front and back so they tell me I may have nausea/vomiting after treatments and then about 7 - 10 days from now I may have diarrhea, both due to the fact that rads location is so close to stomach and bowels.  Just something else to look forward to!!

    Rads tomorrow is not until 4:45 so DM and i are going to go shopping and maybe for  lunch before. 

    Thanks all for the moral support today I thought of you as i was laying on the table....and giggled a little at the vision of all of you partying in my pocket - so THANKS Smile

  • Mermaidia
    Mermaidia Member Posts: 12
    edited February 2013

    I hope everyone is doing well....

    I had my first Taxol last wednesday and woke up Friday morning feeling really stiff, but no pain.  Was pretty fatigued that day, but nothing horrible.  It felt like I was wearing lead weights on my legs.  Saturday the achiness set in and the fatigue continued, but nothing I couldn't handle...just took it easy that day.  Sunday I was a little less achy and fatigued.  Today I feel pretty normal but I also slept 12 hours last night.....I never do that!! 

    It was also pretty weird to have the steroid flush - I'm so pale that it really showed up!

    If this is the worst it gets, then I'll be very happy!!

    My hubby's cousin is an onc. nurse and she told me that when I'm feeling my worst to think of the chemo as a Pacman game and that it's eating up all those "bad guys."

    Take care all....

  • CelineFlower
    CelineFlower Member Posts: 145
    edited February 2013

    i am bedridden..

    cant cook... cant do anything..

    im tired.. my bones hurt... my headache is so overpowering...

    and no one wants to give meanything stronger...

    i just dont get it..

    4 more to go... god im anxious for this to be over

  • mareluna
    mareluna Member Posts: 275
    edited February 2013

    Celine,

    I am sorry you are having a rough time. Did you call chemo nurse? I would bug them to get a hold of your onc. You need pain pills.

  • CelineFlower
    CelineFlower Member Posts: 145
    edited February 2013

    i have over and over..

    im changing onc's as well

    all they seem to give me is... tylenol with codeine... benilyn... advil 3 in 1... blah

    thx for your concern 

  • PeggySull
    PeggySull Member Posts: 368
    edited February 2013

    I got this way with AC. I am so sorry you are feeling this way. If you can't get anything stronger, take Aleve. That was the only nonprescription drug that is helping me during taxol.



    I keep telling myself "This too shall pass" and watching the most distracting things I can find on tv or DVD. Those you can do on the days you have to stay laying down.



    Sending good thoughts your way.



    Peggy

  • jayjayc
    jayjayc Member Posts: 31
    edited February 2013

    hey macho-mouse,

    Are you still out there and if so how are you doing??  I'm thinking of you as I head out for my 5th treatment...

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