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Weekly Taxol group

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Comments

  • MamaBexar
    MamaBexar Member Posts: 49
    edited October 2015

    Hi Ginger, Are they giving you anything for the joint and muscle pain? My R.A. meds were stopped as soon as I got the b.c. dx. The chemo drugs sometime work the same way the R.A. med do but I don't think Taxol is one of them.

    I am having nose bleeds today. I have a call in to the cancer center but haven't heard from them yet. Any one else have this problem? I am concerned because I was a little anemic last week already.

  • trvler
    trvler Member Posts: 931
    edited October 2015

    Nosebleeds are common. I had them at least once a week on Taxol. I know others in my chemo group did as well. They stop immediately when you finish Taxol. They did for us, anyway. Are you having trouble stopping them?

  • MsBrompton
    MsBrompton Member Posts: 324
    edited October 2015

    Agree, nosebleeds on taxol very common but they don't last long. A nuisance more than anything. Worse first thing in the morning. Possible way to avoid: steamy shower as soon as you wake up. Adds moisture inside your nose. Apparently due to loss of the little hairs inside the nose that keep it nice in there.

  • GingerChi
    GingerChi Member Posts: 25
    edited October 2015

    MamaB: I took ibuprophen for my aching and pain, it pretty much only lasted 48 hrs each week so I was able to manage it that way.

    I also had nosebleeds on Taxol...not so much bleeding but a lot of dried blood in my nose, which was uncomfortable and annoying! I used Simply Saline Nasal Mist by Arm & Hammer, and put coconut oil in my nose. Between the two that brought some relief.

  • MamaBexar
    MamaBexar Member Posts: 49
    edited October 2015

    Thanks to you all for some good suggestions and equally good reassurance.

  • trvler
    trvler Member Posts: 931
    edited October 2015

    :) That's what we are here for.

  • KarenAus
    KarenAus Member Posts: 66
    edited October 2015

    Had my 6th infusion today, yay half way there. We had some drama trying to get blood this morninng. Nurse could draw blood and even flush either. So after accessing the port 3 times we eventually got ther but it is a worry as I can stop the port from working by where I put my arm. I am a bit worried it will totall shut down. I am on the home run and want this thing to keep working for another 6 weeks.

    Karen

  • justmaximom15
    justmaximom15 Member Posts: 89
    edited October 2015

    KarenAus, my port gives my nurses trouble too and they assure me that it is perfectly normal and probably due to fibrin forming over the port. Sometimes I have to practically stand on my head to get it to give blood and it most usually does. Last week, they could get blood but not enough to do all my chemistries so I got chemo but they took blood from my vein for all the testing.

    Congrats on the half-way mark!! I'm getting #8 of 12 tomorrow.

  • mama26
    mama26 Member Posts: 4
    edited October 2015

    Ok ladies who are using magnesium oxide for constipation. What dosage do you take and how often? I'm struggling and what I'm taking is NOT doing the job. Thanks in advance!!!

  • Shopgal2
    Shopgal2 Member Posts: 594
    edited October 2015

    hi ladies hoping to join the group even thought I am getting dd taxol, not weekly. I had my first dd taxol yesterday and woke up this morning with itching all over. No rash only a red face and neck from the steroids. Anyone have itching? It feels weird like crawling under my skin that comes and goes. I did take Claritin and b vitamin this morning. I do get neulesta later today.

  • trvler
    trvler Member Posts: 931
    edited October 2015

    I take 250 mg every night right after dinner. It is also supposed to help with sleep and hot flashes. If I am really backed up, I can take 500mg. But more than that and I would be in trouble.

  • Italychick
    Italychick Member Posts: 527
    edited October 2015

    I take magnesium glycinate and magnesium threonate, 900 mg. of glycinate and 100 mg of threonate. Oxide is more poorly absorbed and can lead to poop blowouts. Trust me, I know from experience. Even with my current magnesium supplements, once in awhile I have to drop it for a day or two or else!

    Allison is right on the oxide dosage. I think with glycinate you can take more. If it does blow you out, the effect should last for a few hours and then next time you know to take less. Not very scientific, but it gets affected by all kinds of things, like exercise sweating. So on days I do a vigorous workout, I can take more because I need more. On couch potato days, I take less. During chemo, if I felt constipated, I popped magnesium until I pooped, like 250 mg. an hour until sh*t happened.

    I take mine before bed, helps me sleep, and then in the morning, I go. It seems doing it that way kind of helps me with a natural rhythm, if you get what I mean. Plus I am close to a bathroom if anything crazy happens.

    Magnesium should do the job, but you can also look into Pantethine. It gets the smooth muscles functioning better, which is what the colon is. But magnesium has always worked for me! Best stuff ever

  • MsBrompton
    MsBrompton Member Posts: 324
    edited October 2015

    Shopgal2, I had itching and skin crawling on weekly taxol. In the end I got used to it, but it only lasted 24 hours after each infusion.

  • Shopgal2
    Shopgal2 Member Posts: 594
    edited October 2015

    thanks MsBrompton. As a newbie to taxol I was getting panicky about a delayed allergic reaction.

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited October 2015

    i had an allergic reaction to taxol. It happens right away. Like an elephant sitting on your chest and so much pain...ergh....

  • 27heart
    27heart Member Posts: 83
    edited November 2015

    Hi everyone! Here's a quick question on L-glutamine. The neuropathy on my finger tips is significantly worse than it was before I got my recent taxol infusion so I got worried and bought a bottle of L-glutamine supplements in hopes that it'll help ease the numbness.

    For those who are taking L-glutamine, what dosage would you recommend, and how did it work for you? Thanks in advance!

  • MsBrompton
    MsBrompton Member Posts: 324
    edited November 2015

    27heart, I took 1000 mg per day of glutamine and also 1000 micrograms of B12. I have finished taxol and got no neuropathy. How far through are you?

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited November 2015

    27heart, I was taking L-Glutamine powder, 10 grams in liquid, 3 times a day - made for 30 grams a day. I barely had any neuropathy during chemo, slight tingling here and there. About a month PFC a part of my foot became numb and it is still numb today. The MO said this was unusual - the timing and the numbness pattern - and doesn't think it was from chemo. But no real answers as to from what it is.

  • buzz328
    buzz328 Member Posts: 17
    edited November 2015

    Has anyone experienced neuropathy anywhere other than their hands or feet?


  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited November 2015

    I had neuropathy in my tongue. Couldn't taste a thing and my tongue was numb. Fascinated my MO cause I guess it's rare. Autosomal neuropathy was what she called it.

  • KarenAus
    KarenAus Member Posts: 66
    edited November 2015

    Just had my 7th taxol, yay only 5 to go.

    I was wondering what to expect as I hear this is when it gets a bit rough for some.

    Karen

  • justmaximom15
    justmaximom15 Member Posts: 89
    edited November 2015

    Karen, I'm having #9 tomorrow and my experience has been that the fatigue has really gotten worse in the last couple of weeks. I'm just simply exhausted.

  • rainnyc
    rainnyc Member Posts: 801
    edited November 2015

    Justmaximom, I found there were weeks when I was very fatigued, but it seemed to get better over time. I hit the wall around weeks 7-8 but then found I had more energy after that. Or maybe I was just better at pacing myself on the crash day(s), which were 2-3 days after the infusion. I could never predict which day would be the worst. But other than that, I did seem to get my energy back over time and the fatigue wasn't as bad as it was early on. Hope this happens for you.

  • MamaBexar
    MamaBexar Member Posts: 49
    edited November 2015

    I was hoping it got better. I am having #5 tomorrow and my fatigue is pretty bad now. Could be anemia, I guess. I already had severe neuropathy before bc. Not sure if it has gotten worse. I am more wobbly than usual but that could be anything. On the positive side, no really awful side effects.

  • 27heart
    27heart Member Posts: 83
    edited November 2015

    I second that there are side effects, but they aren't really awful ones. I'm on #9 with maximom and the fatigue is REAL! And the neuropathy that I keep complaining about (thanks everyone who chipped in on the L-glutamine dosage! I hope it works for me.).

  • JulieAggie03
    JulieAggie03 Member Posts: 41
    edited November 2015

    I had #6 last week, going for #7 on Friday. I have noticed this week I am more fatigued, can't stay up past 9 o'clock anymore and I am usually a night owl. The neuropathy has not been bad in the pain department but I do think it is giving me some muscle weakness as I am more wobbly than normal. I have a bad ankle from a roller derby accident a few years ago but it is more prone to turning in than usual. I have twisted it twice in the last week and fallen once. Wearing my thin ankle brace to try and keep me from doing any major damage! Don't need any broken bones right now that's for sure!

  • MsBrompton
    MsBrompton Member Posts: 324
    edited November 2015

    Fatigue got worse with every successive week, to the extent that it was hard to get out of bed in the last few, BUT I am now day 12 post final chemo and I feel almost normal. Can't believe how quickly I got my mojo back. So even if you do get progressive fatigue (and you may not!!), it gets better pretty promptly when the course is finished.

  • LRFTexan
    LRFTexan Member Posts: 57
    edited November 2015

    ladies, if you did a different chemo before weekly Taxol, did you have a break in between? I don't want a break just want to get it going!!!

  • JulieAggie03
    JulieAggie03 Member Posts: 41
    edited November 2015

    LRFTexan-I had 4 dose dense AC before I started taxol, my onc just waited 2 weeks like we were doing between AC rounds and I went straight into the weekly taxol. I'm on the downhill stretch now, only 5 left!

  • LRFTexan
    LRFTexan Member Posts: 57
    edited November 2015

    thanks Julie. I am doing AC too..I am so impatient. Glad you are almost done, that is great news

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