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Weekly Taxol group

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Comments

  • StefLove
    StefLove Member Posts: 201
    edited August 2015

    I want to bring something too when I'm done. Maybe an edible arrangement or something similar? I know they have little cake parties when there's a nurses bday that day and stuff so this might change it up a bit. Still have 4 more weeks to decide!

    Ok so I think I'm getting neuropathy in my little toe on my left foot. At first I thought it was the shoes I was wearing last week but it's still tingly and not going away. I told the nurses last Friday and they noted it but didn't seem concerned. When do I start getting concerned? My hands are totally fine. It's just my left little toe and sometimes the one next to it too. Ugh! I've been taking b6 religiously every day and was hoping to avoid this

  • trvler
    trvler Member Posts: 931
    edited August 2015

    Try glutamine in addition to the B6. I take it 1x a day because I have heard some conflicting stuff about it. Also, I hate to say it, but I noticed a lot more tingling this week and I wasn't doing any exercise because my port removal site was still healing. I went back and did two workouts and I have noticed a slight improvement in the tingling. It is hard to say if that is why. If I had more time before surgery, I would have time to figure it out but I had very little tingling and worked out throughout chemo.


    Take the glutamine in a cold liquid. I put it in my smoothie.

  • StefLove
    StefLove Member Posts: 201
    edited August 2015

    thanks Trvler! I'll be buying some today. My mo and nurse told me about it but said don't use it until I need it. Guess now is the time :)

  • anewbeginning
    anewbeginning Member Posts: 97
    edited August 2015

    Trvler

    How much B6 do you take? I am taking the L-Glut also but doesnt seem to be helping. My toes feel like their not even there.

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited August 2015

    I can't taste anything for several days after treatment. MO says my tongue has neuropathy...go figure

  • anewbeginning
    anewbeginning Member Posts: 97
    edited August 2015

    Tresjoli

    My taste buds are affected too after taxol but get a little better as the days go on. The weird thing is anything sweet is magnified like 10 times so I cannot eat anything sweet. Wed is my last Taxol and Im hoping all will improve with time especially the neuropathy in my feet and fingers. Hope it all improves with you too!

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited August 2015

    mine gets better too. Doc says it's because the nerve endings are so much smaller. It takes longer to regenerate to your toes than it does to the tip of your tongue. I found the conversation fascinating, but wish I didn't have to have it. I have the sweet thing too - it's the only thing I can taste.

    Started neuropathy in my hands this weekend after treatment #10. Not sure if I should call MO as it's not an entirely unexpected side effect.

  • princesstina
    princesstina Member Posts: 129
    edited August 2015

    So, my feet generally feel fine, but when I exercise, they go numb? Odd yes?

    Did someone say something about achy teeth also? Mine hurt sometimes off and on for no reason?

  • leighrh
    leighrh Member Posts: 102
    edited August 2015

    My tongue is gross too... kinda numb but more just burnt.... it's really bad days 2-5, starts clearing up then I go back for more! Sweets are what taste best but after I eat them a few minute later it taste like I have a mouth full of salt! You would think I would be wasting away from weight loss if my mouth is so yuk..... but no... I still manage to eat! :) Ring finger and pinkey on both hands kinda tingle for a few days too. Same with the last two toes..... don't know why it's just those ones.. Starting to get black spots on my nails too.... I can see it creeping even though I have them painted dark.

    I will be DONE on Thursday and I am so excited...... but.... I just see all these things I have to recover from and they seem overwhwelming!! Nails, Hair, Tastebuds, fatigue...........Hopefully when I feel better they won't seem so bad! :)

  • KBeee
    KBeee Member Posts: 695
    edited August 2015

    Princess, I had sore teeth and upper jaw too.

    So glad so many of you are finishing this week.

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited August 2015

    my doctor is putting me on neurontin to deal with the neuropathy and help me rest at night. Has anyone else been prescribed this and did it work

  • AnnTX
    AnnTX Member Posts: 3
    edited August 2015

    I'm in the infusion chair right now on week #3 of Taxol. A volunteer told me today that almost everyone on Taxol eventually has to take at least a week off because of their lab results--I'm assuming something like white blood counts going down. Is that true? I really am hoping to just plow through the 12 weeks with no breaks and just get this over.

  • leighrh
    leighrh Member Posts: 102
    edited August 2015

    Ann... I am going for # 12 Thursday.... I have not missed a week and hopefully #12 goes off with out any problems!!!!

  • anewbeginning
    anewbeginning Member Posts: 97
    edited August 2015

    My new MO prescribed Gabapentin for me but I didnt start taking it yet. Wed is my last Taxol so I will wait and see because te medication doesnt cure it it just deals with the pain and tingling which I can live with for awhile although its not pleasant. I am on enough meds already. Hope the neurontin helps

  • melb44
    melb44 Member Posts: 64
    edited August 2015

    Ann -

    I never missed any either and I have #11 on Wed.

  • anewbeginning
    anewbeginning Member Posts: 97
    edited August 2015

    Ann

    I had to take a break after #10........I made the decision myself because I just didnt think I would survive it.....Im not sorry

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited August 2015

    I had to take a break but it was because of my allergic reaction and the switch to abraxane

  • anewbeginning
    anewbeginning Member Posts: 97
    edited August 2015

    Leigh

    I too have to "too sweet" thing going and for that reason I cant eat them. I am still losing weight and cant wait for my last Taxol Wednesday. Im hoping all the s/e's will diminish with time. First I want my appetite back then get rid of the neuropathy if Im lucky.

    My nails have had the black spots since I started and I am also losing my right hand thumb nail as a new one is growing in already. My big toes are turning white and lifting so I probable will lose them both. This has not been a walk in the park!!

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited August 2015

    AnnTX, I went through 12 Taxol with no breaks.

  • bluedog
    bluedog Member Posts: 147
    edited August 2015

    AnnTX, I finished 12 Taxols on August 20 without taking any breaks. I was able to do a fair amount of exercise (yoga and walking) throughout, and maybe that helped.

  • suladog
    suladog Member Posts: 837
    edited August 2015

    I went through all 12 with no breaks and by the end of the 12 weeks, no taste buds either..however within a couple of months, they were back

  • trvler
    trvler Member Posts: 931
    edited August 2015

    I delayed week 1 a week because my said my platelet count was iffy. I will swear to this day she did it because I made a mistake in my appointment time and was an hour late. She is just like that.

    I believe exercise helps. Not sure about walking but I was doing elliptical and jazzercise the whole time. I am having some tingling lately and I think it is because I slowed down on exercise after my port was taken out on Aug 18.

    I never had any of the bad nail stuff or blackening. I had a few twinges of pain now and then but that seems to have stopped.

    I will check the b6 amount. Not sure.

  • KBeee
    KBeee Member Posts: 695
    edited August 2015

    Ann, I never had a break. I did all 12 with no problems.


  • molly1976
    molly1976 Member Posts: 78
    edited August 2015

    Same here, all 12 with no breaks.

  • Imagineme13
    Imagineme13 Member Posts: 6
    edited September 2015

    I too experienced nose bleeds from dryness and even when my nose is runny I have bloody discharge in the mucus. My MO recommended a saline nasal spray daily for the dryness and the nose bleeds and bloody discharge went away in about a week. I had a feeling it had to do with the taxol.

  • AnnTX
    AnnTX Member Posts: 3
    edited September 2015

    Thank you to everyone who replied to my comment about having to take breaks with Taxol. I'm encouraged by how many did not and are completed with it. And thankful for the honesty of those who had to take a break. I'm still hoping to plow through. Still hanging in there after #3 today. I'd still love to hear more from others about whether or not they had to break, so if you want to reply, I'll still be coming back to this thread. :)

  • Imagineme13
    Imagineme13 Member Posts: 6
    edited September 2015

    AnnTX, unfortunately for me I had to keep delaying my weekly taxol treatments because of my low white blood count. Finally we got on a schedule to have an injection for 2 days after my taxol treatment that would boost my cells back up. That corrected the delays of taxol.

  • dltnhm
    dltnhm Member Posts: 420
    edited September 2015

    Ann,

    I think that perhaps the volunteer was attempting to be helpful ?? but I doubt that she is correct regarding those who have the 12 weekly Taxol regimen.

    As someone who did 4 dose dense AC and then 12 weekly Taxols in a row ... no breaks, no problems with counts, etc.in 2012, I do not recall those who were doing this along with me taking breaks or having the dosage cut back.It has appeared to be the exception to have trouble - rather than the rule.

    Also, at least on here, you will find that there are those who are taking weekly Taxol infusions for stage IV and those for early stage cancer ... Those who are getting weekly Taxol following dose dense regimens, those who did a dose dense regimen, had surgery, and then followed that with weekly Taxols, and those who are only getting weekly Taxol period. So many different scenarios.

    Drink you water . yes hydration is important with Taxol too! Exercise ... keeps the blood flowing. Hope you have zero complications and no setbacks!


  • leighrh
    leighrh Member Posts: 102
    edited September 2015

    Anyone besides me.. hair just not coming in during Taxol??? I am still very shiny bald with very few hairs popping through. it's starting to kinda worry me that it's not going to come back. Of course immediately jumping to the worst case scenario but.....I have zero hair... anywhere!! I know it's not going to magically appear after Thursday but I thought at least I would see something. Some people have a head full at the end of Taxol!

  • ninjamary
    ninjamary Member Posts: 67
    edited September 2015

    Leigh - I went to my first radiology appt yesterday and the girls were saying that when they see most new BC patients they don't have much hair and I had a lot of hair. Granted I started rads 4 weeks after chemo, but I still don't think I have all that much hair.

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