Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Weekly Taxol group

1…2526283031…426

Comments

  • ridergirl
    ridergirl Member Posts: 94
    edited February 2013

    Hi all, new to this thread but not new to the boards, had 2AC then 3 FAC now just finished Taxol #1 last friday. Taxol seems easier to tolerate as far as no nausea and doesn't seem quite as tiring, in fact having more trouble sleeping right now than anything else.  Worst part for me is the neuropathy - left hand is almost completely numb and the right is a litle bit so, pharmacist at my treatment centre suggested i try B12 as its supposed to help regenerate the nerve coating, and also suggested I switch from Effexor that I have been taking to Cymbalta as its supposed to help nerves as well.  Anyone else with these issues just curious to hear how you are helping/coping with it.  Also the hot flashes - I have started with them since taxol #1 - is this a common side effect for anyone else?

    ((hugs)))

  • jayjayc
    jayjayc Member Posts: 31
    edited February 2013

    macho-mouse



    YEAH.... i've been checking the board like crazy to see how it went for you (you truly were on my mind)..... it really does get easier (at least in terms or nerves). I got number 4 yesterday WOOOH HOOOOO i'm a third of the way through..



    I had some SE's that I didn't know were normal until i read these boards (or maybe reading the boards gave me the SEs *lol*)'.



    my teeth hurt/ached but that seems to have gone away, and for a couple of days later in the week it burned when i peed (before my 2 TH they checked for a uti but i was fine).... i still have that happen but i increased my water intake and added light cranberry juice... i also watch for additional signs of uti to be safe...... i'm also started 200mg of b6 today thanks to all of the great advice on these boards about neuropathy.... asked my chemo nurse about it yesterday and she was like .... of course we have a lot of patients do that.... just wish she'd told me upfront....... and benadryl the night of treatment, just learned about that.... had trouble sleeping the first couple of nights after treatment so i mentioned that during treatment 3.... the nurse says take a benadryl the first night or two... didn't have any and paid the price with less then three hours sleep and crazy energy the next day..... so last night after number 4 i took a benadryl.... slept almost 8 hours although i woke up alot and feel a tiny bit doped..... but i can feel the steriod energy starting to kick in as i write this e-mail....... lucky for you guys right..... NOT



    guess i'll go to work and harass them with this crazy buzz.....



    thoughts still with you macho-mouse as we take this stupid mean not fair journey together...... please let me know if you need anything.....

  • jayjayc
    jayjayc Member Posts: 31
    edited February 2013

    ridergirl,



    hot flashes my old friends..... i was on birth control for premenopause when this started back in november..... they had be stop the pills immediately..... shortly after that i started having crazy hot flashes all through nov/dec...... but they stopped in the beginning of jan before my treatments started so all of that was from stopping the bills (also haven't had a period since early november).....



    i've now had 4 TH and am starting to get the hot flashes again..... like several last night.... but after reading these boards i think that might be from the steriods in the premeds....... it's really nuts if you think about it.... you have bc which causes tests which causes pain and se's which causes treatments which cause even more se's which causes premeds to treat se's WHICH CAUSES EVEN NORE SE'S...... who the heck invited this ride..... i felt better and was healthier with just the bc



    okay..... note to all i should stay OFF the boards when i'm on my steriod high..... sorry

  • Macho-Mouse
    Macho-Mouse Member Posts: 19
    edited February 2013

    Ladies- you are great. Thanks for all the info and support! :)PatinMN and jayjayc - I feel the same as I did before treatment. I took time off work but now I'm thinking I can easily manage both. I will give it a week. You were right, anticipation and the anxiety I gave myself was far worse than the actual treatment. My husband came with me... He was so sweet. Rubbed my feet, brought me food :)  ridegirl - I agree with jayjayc, maybe the hot flashes are from the steroids? Did you have premeds?  

    Before I underwentm the first treatment I went and had IV nutrients which consisted of all the B vitamins, magnesium, high does Vit C and some other shhhtuff. I just ordered injectable Vitamin B complex so I plan on giving myself shots once a week in addition to the weekly IV nutrient treatment I am receiving from my Naturopath. I tried to prep my body as much as possible. So far so good. Today I am feeling great after my first infusion... I keep watching the clock anticipating a change so I'm prepared... We shall see.

    What I also did yesterday before I headed out to the doctors... I have myself a coffee enema. I was reading up on how this detoxifies the liver. I was planning on doing one last night too but had no time. They say do them once a day but that just doesn't fit in my schedule :) Maybe every other day. I will at least do it on the day before my treatments if things go well this week. I will want to reproduce anything I did before the 1st because I feel rather fabulous right now! Unless someone on here is going to tell me the steroid high lasts a couple days and that's why I haven't succumbed to the SE? Say it isn't so. Don't bust me bubble! :)

    Keep me posted ladies. Your stories and personal journeys really help me get thru the day and deal with this ugly thing. xo

  • ridergirl
    ridergirl Member Posts: 94
    edited February 2013

    I do get benadryl and dexamethasone for premeds - i know the dex causes heat and a flush that can last me a couple days, but flashes seem to keep on coming.

    Jayjayc i so get what you're saying about that whole cycle, just went through it yesterday with PCP appt, of course to get meds to deal with the s/e's of the meds i'm already on! Also hadn't really thought about it until you said it but I haven't had a period in a while either.....

  • Mermaidia
    Mermaidia Member Posts: 12
    edited February 2013

    Adagio - Did you have the pre-treatment steroids the day before and then the pre-meds the day of?  I just had my first Taxol today and the onc said that I did so well and didn't have allergic problems that maybe next week I would'nt need them.  I'm also a diabetic and the steroids make my blood sugar skyrocket.  I'm concerned about the allergic reaction if I don't get the pre-meds....

  • adagio
    adagio Member Posts: 713
    edited February 2013

    Mermaidia -  I didn't get premeds the night before - I got Dexamethasone and Benadryl  intravenously prior to the taxol infusion. I would be scared to have taxol without premeds - although - perhaps the benadryl would be enough. I understand about the blood sugars soaring and I have heard that steroids can induce diabetes - imagine.

    Hope your side effects from taxol are minimal - for me it is nasty and I can hardly bear the thought of any more.

  • politicomama
    politicomama Member Posts: 52
    edited February 2013

    Mermaidia, were I get treated after the first two if you have no reaction they take away the premeds.  So far so good.  (I get treated at a major cancer center)  

    Hope you have little to no SE's.  

  • 5thSib
    5thSib Member Posts: 119
    edited February 2013

    Hello to all. I haven't posted in a week or so, but I've been reading. I'm usually reading on my Kindle fire and it's not really easy to post. I'm off to my 3rd Taxol treatment in a few minutes. SE's have been so much better than with AC. I have a pretty constant running nose and watering eyes, headaches every morning, some minor muscle pain/heaviness. I haven't had any actual nose bleeds, but most mornings I have a clot of blood in at least one nostri. I only have occasional bouts of nausea, so that is wonderful compared to AC. I am able to work Monday - Wednesday. I sleep most of the day on Thursday after I get home from treatments, then on Friday I can work from home if I feel up to it. Saturday is my worst day when I just generally don't feel good. 

    Hello to all the new ladies -- wishing you few SE's as you go through treatments. 

    RE Work -- So sorry for those that have issues at work. It is unbelievable that people can act like they do -- it's hard enough on us without people acting so badly at work. I am so thankful that I have a wonderful support system at work. I was open about it from the beginning and upper management has been wonderful. I am an IT manager and thankfully I can work from home, and they don't really care either way. My direct reports have been great about taking up any slack. Management postponed a couple of projects at the end of last year and told me the most important thing was for me to get well and take care of myself. Because everyone knows what is going on, I am comfortable wearing hats and scarves to work which are much more comfortable than my wig. The ladies like to see what kind of headcovering I've got on and how I've tied my scarf. I will wear my wig if we are having visitors.

    I hope everyone has a great day!

  • Pbrain
    Pbrain Member Posts: 773
    edited February 2013

    I'm 3 treatments away from being done with Taxol and I have lots of neuropathy--my fingers and toes tingle and I don't feel very steady on my feet.  Anybody have this and if so, does it go away eventually?

    My nurse practitioner said that it can be tenacious, so they've dose reduced me down to 75% of what I was getting, but the neuropathy seems to be getting worse.

    Thoughts?  Thanks in adance!

  • Pbrain
    Pbrain Member Posts: 773
    edited February 2013

    Mermaidia, I had a treatment reaction during the dosing of my 4th taxol treatment and I can assure you, the nurses know exactly how to handle that.  I pulled the little cord and within seconds they were there dosing me with additional benadryl.  I sat for a 1/2 hour after that with just a saline drip and then they started dosing me again and I was fine. 

    So if it does happen, don't fear.  You will be fine.

  • ridergirl
    ridergirl Member Posts: 94
    edited February 2013

    Pbrain I talked to the pharmacist at my treatment centre last week before my infusion as I had already started with the neuropathy after the first treatment - he recommended vitamin B12 - 1000mcg per day to help the nerves regenerate - did say it may get better or may not - check with your MO first but might be something to consider.

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    Pbrain, I learned from others somewhere on this website about using L-glutamine and Vitamin B6 for neuropathy.  When I mentioned it to my chemo nurses about 3 or 4 weeks into treatment they were all in favor - I don't know why they weren't proactive about it.  Anyway, they gave me some written information about glutamine and recommended dosages, along with some sample packets of GlutaSolv.  The recommended dosage of glutamine is 30 grams per day, broken up into 2 or 3 doses.  It's a powder, and you mix it in whatever liquid you want.  It doesn't dissolve very well so it's a bit gritty going down.  I ended up buying mine at GNC because the GlutaSolv packets weren't in stock at Walgreens (although they could have ordered them for me).  The recommended dosage for B6 is 100 mg per day (although I know some people are taking 200 mg per day). 

    One of the chemo nurses suggested continuing on with this regimen for a few weeks after finishing chemo.  I didn't think I needed it, so I quit - and 2 or 3 weeks later my big toe got numb.  It's not too bad, but now I've started up with the glutamine and B6 again.

    There are a lot of studies indicating that these two things are effective for chemo-induced neuropathy.  A few weeks ago I found a really helpful link from some famous cancer center and tried to post it on one of the boards I follow, but the link wouldn't post properly, and now I can't find it...  But you can google something like "glutamine for neuropathy from chemo" and there are lots of links.

  • nicole503
    nicole503 Member Posts: 99
    edited February 2013

    5thSib - Thanks for saying that you find the Taxol journey easier than AC.  I just got my 4th and final AC this morning and am standing on the brink of what is likely to be a pretty difficult week (judging by my experience with #3).  It is soooooooo helpful to hear that the journey will get easier once I get through this final AC round. Thank you.

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

    Nicole~I'm getting AC 4 tomorrow morning. Dreading it, but will be glad to see it in my rearview mirror. AC 3 kicked my butt, scrubbed the floors with me, and flushed me down the crapper!



    I'm going to get all the info on taxol I can get when I see my Mo before treatment tomorrow. I already have my list made.



    I pray our SEs are easier this round.



    Blessings

    Paula

  • Pbrain
    Pbrain Member Posts: 773
    edited February 2013

    Thanks guys, yeap, I'm taking the B6 and B12.  Nicole, I didn't have AC, but I did have one round of TCH and I was knocked on my butt.  Taxol is like a vacation at the beach compared to that!

  • politicomama
    politicomama Member Posts: 52
    edited February 2013

    AC 4 was my worst ladies.  I was a mess.  Fatigue with a capital F, and depression.  It lasted about 7 days.  I had Taxol number 4 today and drove myself there and back without issue :)  Treatments on Thursday, bone pain on Sunday is the worst of it.  She gave me something stonger than advil today for that.  There is a light at the end of the tunnel. 

  • Cindi74
    Cindi74 Member Posts: 69
    edited February 2013

    adagip,  I had some neurophy before chemo started.  Wih the Taxol I have tingling from shoulders to wrists and from hips to ankles for about 6 days a week.  I occasionally take 500 mg L Carnitine pills.  I notice tonight that the tingling id in my chest also.  Two more Taxol to go.  Am sick of the chemo and want to feel normal.  Does anyone know how long it takes to feel normal after A/C and 12 Txol.  I have four weeks before starting rads.

  • Cindi74
    Cindi74 Member Posts: 69
    edited February 2013

    P Brain,  I have had disequilibrium since I lost all my hair.  i understnd that he chemo affects the hairs in the inter ears.  I have been so carefully holding on to hubby, even using a  waker some.  Then. this morning, I wasn't paying attention and my ankle turned, and I fell--catching on my knee.  Fortunately, I didn't get really hurt.  Just felt stupid, because I was careleess.  The chemo affects so much.

  • PeggySull
    PeggySull Member Posts: 368
    edited February 2013

    Does anyone know where to buy the ice mitts that might help prevent or reduce peripheral neuropathy when having taxol infusions?



    I've only had one infusion and the neuropathy in my fingers is pretty severe. I am taking B6 and L-Glutamine and will continue to take them but I don't think they will be enough to counter the taxol.



    I work with my hands so this is an especially troubling side effect.



    Thanks, Peggy

  • CelineFlower
    CelineFlower Member Posts: 145
    edited February 2013

    rant on...

    why do i have to bedifferent? most ppl are happy with going from a/c to taxol... dont want to scare anybody waiting.. but fuck... its worse then a/c!! 

    i have 4 more weekly taxols to do... i get them on wednesday, feel good that day cuz of premeds... thursday to, for the most part energized cuz of the pre meds... 

    but then from friday to monday morning , i am incompacitated with a headache from hell... 

    i have more nausea with taxol.... fuck i hate this... 

    i want to end this toxic trip...

    i think i see the light at the end of the tunnel... but silly me... its the operating room lights...

    sigh..fucking cancer i hate you

  • gr8flmama21
    gr8flmama21 Member Posts: 5
    edited February 2013

    Ah celine hugs.

    I do my TH on Wednesay steroid buzz/flush stays around til Friday night or so and sat/sun are crash days. I had migraine type headache with neck pain for most of 2nd week and i got tramadol from my dr. This week. She said that sometimes chemo will "bring out" previous issues such as migraines. So far its working for me -took my headache away and yesterday only took tylenol.

  • Skigirl72
    Skigirl72 Member Posts: 180
    edited February 2013

    I start Taxol mid march. I've read all the posts on this thread. Thanks for giving me insight into the next phase of my battle.

  • ridergirl
    ridergirl Member Posts: 94
    edited February 2013

    Poor Celine I hear what you are saying about being different....it sucks. I seem to keep being 'unlucky' as well as I am in the 'small' percentage of people that certain treatments don't help.  First it was tamoxifen, 2 months of that and stop because it's not working.  Then 2 AC and 3 FAC, stop that because its not working.  Now Taxol.  Only had 1 cycle so far so too soon to see if it's working, but its enough to make me keep worrying all the time, because I don't know how many more options there are if this one fails, or how much worse the side effects are with each new drug.

    Sorry to hear you are having such an awful time with Taxol - so far it has been easier on me than the others except I have neuropathy in  my fingers now which makes so many things so hard to do.

    I agree totally tho...........FUCK cancer!!!!!!!!!

  • CelineFlower
    CelineFlower Member Posts: 145
    edited February 2013

    thank you rider girl

  • adagio
    adagio Member Posts: 713
    edited February 2013

    Taxol is way harder than AC for me.

    Peggy - I asked the chemo nurse for the mitts at my first taxol and she said that they were only given to taxotere patients - but my oncologise wrote a note requesting the mitts for me at the next infusion. I took ice for my feet and also used it on my fingers after the nurse got so busy she couldn't get me more cold mitts (they lose their cold quickly) . I am planning on taking ice again because I believed it helps a lot. I also do acupuncture weekly for neuropathy - also known to help.

  • PeggySull
    PeggySull Member Posts: 368
    edited February 2013

    Thanks, Adagio, I'll check with the infusion nurse on Monday.



    My. Husband got a bad intestinal flu last night and has slept thru the day today.



    I'm trying to help but am keeping as much distance as I can because I don't want to delay my treatment on Monday.



    I interview a plastic surgeon tomorrow if I don't succumb to the flu myself. Fingers crossed.



    Peggy

  • 5thSib
    5thSib Member Posts: 119
    edited February 2013

    Soteria205 -- I love the way you described AC -- I agree totally.

    CelineFlower -- so sorry that you are having such a hard time. I've had headaches with both AC and Taxol. Having a really bad one right now. Took 2 extra strength Tylenol over an hour ago, but hasn't helped. I have pain medicine, but I just don't like the way it makes me feel.

    Has anyone experienced soreness under fingernails the day after Taxol treatment? I've had it happen after the 1st and 3rd treatment. It only lasted one day after the first treatment. I'lll know tomorrow if it's only one day this time.

    Treatment yesterday wasn't too bad. I did have some muscle ache that started during the treatment and have had some achiness and headache today. Otherwise I've felt good compared to how I always felt for 7 days after AC.

  • adagio
    adagio Member Posts: 713
    edited February 2013

    5th sib - the morning after my 1st taxol, I was wakened up by excurciating pain underneath my thumb nails - it lasted a whole day - then subsided and just occasionally hurt now. After the 2nd taxol, I had the exact same pain underneath both pointer fingers - this didn't last as long as the thumbnail pain. My doctor said it is nerve pain - it is not pleasant at all. She said that Gabopentin might help - she gave me the prescription, but I didn't take it.

  • 5thSib
    5thSib Member Posts: 119
    edited February 2013

    Adagio -- mine is not really pain, it's just sore if you press on it or like when I'm typing. My index fingers are the worse.

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.