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Weekly Taxol group

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

    Morwenna~~Post Final Chemo, and I'm pfc 5 weeks tomorrow and getting stronger and more like my old self everyday. Just in time to start rads on Monday. There goes the energy again!



    My hair has been coming in mostly on the sides, looking like grey duck down, so I buzzed it again a couple days ago to get rid of the dead chemo hair.



    Paula

  • morwenna
    morwenna Member Posts: 204
    edited June 2013

    I was just examining my hair, such as it is ..



    I didn't completely lose it from the top, but I used to shave it as I was quite bald at the sides. On taxol the sides started growing back, so I've been letting it do its thing. Then the TOP started dropping out, and is now much thinner than the sides!!



    The sides of my head have grown in completely white, while there is a little colour (?grey) mixed in the top, its hard to tell.



    I'm considering shaving it again, but I feel everybody would be so disappointed! :)



    I have my f/u appt with my BS today, and I have to tell her I have found lumpies in my other breast. My onc said they feel like fibrocystic changes, but that's what I thought the last time!!!



    I'm booked for an ultrasound, but not til July 2. I wish I could have had it before I see her. Feeling somewhat sick at the thought I might have gone through all this chemo and it hasn't touched the cancer at all. If this really is new primaries, then it is truly devastating news.

  • honeybair
    honeybair Member Posts: 234
    edited June 2013

    Off Taxol now for one week, but still incredibly fatigued,  but on a positive note, no neuropathy and may lose one toenail.  Hair is returning and is that no color called dishwater blonde, but how welcome it is.  Now have to endure mentally until August 19 when I will have modified radical mastecomy and all lymph nodes taken.  When I expressed concern about lymphadema, the surgeon assured me that 70% do not get it at all.   She was not sympathetic.  She may be a smart and skilled surgeon, but appears to be lacking in empathy.

  • dltnhm
    dltnhm Member Posts: 420
    edited June 2013

    Honeybair -



    I implore you to either get a second surgical opinion with a surgeon educated regarding lymphedema or go back to your surgeon armed with research before you agree to having all of your axilliary lymph nodes removed.



    There is too much research out there regarding not removing ALL of the lymph nodes and not putting oneself at a greater risk of recurrence or new cancer.



    Imagine yourself one of the 30%. That's still a fairly significant portion. Regardless of how many nodes are removed, you will be engaging lymphedema prevention behaviors for the rest of your life. But why increase that risk if it is possible to lower it?



    Also, sorry if I am missing something, but how is it that you are staged prior to surgery without the full pathology. The size of your tumor prior to preadjuvant chemotherapy?



    The gals on the Lymphedema threads will arm you with research to present to your surgeon.



    Blessings



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

    Paula, good luck on rads. I just had my 24th one today and have done well. Fatigue hasn't been as bad as I thought it would be but I did leave work early today because I was tired and generally don't feel good. They did the mapping today for my 7 boost treatments which will start next Thursday.



    On the neuropathy subject -- I was told to watch for tingling and numbness. I did not have either of those but had pain in my fingertips after each treatment and it got worse each time. Turns out that was also sign of neuropathy. I still have numbness in my fingers and itvs not getting better yet. I'm about 9 weeks PFC.



    Morwenna, I thought PFC meant the same thing you did the first time or two I saw it. It's fitting.

  • michelle68
    michelle68 Member Posts: 8
    edited June 2013

    Morwenna- love your description of pfc better...lol...made me laugh...i will keep you in my prayers that your ultrasound will only show fibrocystic changes...just keep those positive thoughts in your head and send the worries away...you are a warrior!!

    Honeybair-I understand about your surgeon...I am having a lumpectomy on left side and they already know 1 node is positive..so I will be having an auxillary node dissection, which i am guessing is all of them...when I tried to bring up my concerns she just said we will discuss that when the time is closer..my surgery will be in august sometime, but I just want to be mentally ready for what lies ahead..a second opinion couldn't hurt either

    Today I had taxol/herceptin #10...yay 2 to go....my hair started growing back near the end of AC chemo now I can only see a little bit of my scalp...so I got brave and bought my trusty Natural Instincts Cinnaberry, colored my hair last night and the gray/really dark brown is gone...back to my favorite auburn...just in time to go back to work until my surgery. I might get brave and go in without a hat!! I work at Target and my wig is just too hot. I will try to download my picture and update my profile. The only neuropathy I have is in my 2 baby right toes hope it stays that way. Fatigue is manageable.

    Keep the faith ladies, we can help each other and fight like WARRIORS!!

  • colt45
    colt45 Member Posts: 383
    edited June 2013

    My wife had no neuropathy during taxol, but about 7 weeks pfc, she has gotten some numbness in fingers and toes. A co-worker told her a similar thing happened to her---then the numbness went away again, almost completely.



    Anyone have this happen?

  • PatinMN
    PatinMN Member Posts: 784
    edited June 2013

    Colt, I got a numb big toe about 3 weeks PFC. I had only fleeting numbness throughout chemo, and after taxol #12 I did my usual 4 days of glutamine and then stopped. The nurses had told me to continue it for at least 3 weeks, but I was out and didn't want to buy any more. Sure enough...got the numb toe. It is fine now. All that to say, yes I thnk it's common for neuropathy to come on after finishing chemo.

  • morwenna
    morwenna Member Posts: 204
    edited June 2013

    I AM a warrior!



    I saw my surgeon, and she says she thinks my breast feels normal.



    She has agreed to refer me to a plastics surgeon to discuss reconstruction, and didn't demure when I said I was strongly contemplating prophylactic mastectomy with immediate reconstruction on the right side.



    On my way home I bought some hair chalk (washes right out) and coloured my hair blue and violet! :)



    This afternoon I got a call from the imaging centre to say they had a cancellation tomorrow morning, and my DH is able to come with, just in case! My last visit there ended up with a surprise biopsy, and I'm not sure how I drove home safely after that!



    I feel things are going to be O.K.!! :)

  • lpc
    lpc Member Posts: 39
    edited June 2013

    Paula thanks for your answer. I will have taxol every 2 weeks for total of 4 treatments. Ac knocked mo out tired too but did manage to work full time. Will go out and get the b vitamins and glucosamine. I work on my feet so very concerned about the neurapathy



    Lisa

  • Pbrain
    Pbrain Member Posts: 773
    edited June 2013

    5th and Davick, do take the B6 and take a lot of it.  It is cheap and it is not fat soluble, but water soluble, so if your body doesn't need it, you will just pee it out.  I didn't get neuropathy until about week 7, but when I got it, I got it fast and really bad.  I was a little unsteady on my pins because my feet were numb (great for dog walking during an Indiana winter!).  My NP dose-reduced me to 75% during week 9 and then 50% during weeks 10, 11 and 12 because she was worried about.  She said when the neuropathy hits, it can be tenacious.

    I didn't take the B6 during chemo.  I was taking so much other stuff, plus I had so much diarrhea that I just eliminated things without absorbing them (I kept finding my horse-pill sized potassium pill floating in the toilet...)  After about week 4 post chemo my neuropathy was gone, except in my left hand, where it was really bad.  I am left handed, so that was really annoying.  I started to take B6 during week 5 PFC.  I'm at week 17 post chemo and it is almost all gone.  Just my left pinkie is tingly, so I still can't type with it.  But I'll just keep taking the stuff because somehow it really seems to help.

    Paula, you might be surprised with rads.  I was dreading them, but found the whole thing to be actually pretty easy.  It is so much easier than chemo.  The only side effect I got was some skin reddening and peeling, but I kept putting the lotion on.  I wasn't tired from rads per say, probably just from being so recently done with chemo.  At the end, when they did the boost to the tumor bed for 5 treatments, I have develped an ache (intermittant) in that area.  I saw my RO yesterday for my 1 month checkup and he said that is very normal and will go away.  It didn't help that I had a diagnostic mammogram on the left breast 2 weeks after finishing rads.  I thought I was going to hit the ceiling during that torture.  Yell  The tech said "don't breathe" and I said "well then how can I scream?"

  • lpc
    lpc Member Posts: 39
    edited June 2013

    Has anybody done dose dense taxol? I am seeing lots of 12 weekly doses. I will be having 4 treatments going every other week.



    Lisa

  • morwenna
    morwenna Member Posts: 204
    edited June 2013

    Hi Lisa,



    From the title, it would appear that this thread was set up for people on weekly taxol to compare notes, so that's probably why. ;)



    Although each regime has a range of possible side effects, it is probable that dose-dense (ie bi-weekly) will have different effects to weekly (at a lower dose), and again will be different from people getting Taxol every three weeks.



    I'm sure the weekly is the easiest to tolerate, although the effects are somewhat cumulative, and seem to be more problematic in the final 8-12 treatments.



  • LeslieVilla
    LeslieVilla Member Posts: 57
    edited June 2013

    Thank you so much for that info, They switched my chemo for the 3rd time and took out the carboplatin and cut the IV steroid in 1/2 so I'm just doing weekly taxol and heceptin every 3 weeks.  It's much easier.  I'm not in bed this time but still having constipation and problems digesting my food I'm so bloated I cna't wait to find way to get the air out of my stomach. I feel like what ever i eat just sits on top and wont move outpast my ribs! 

  • pamelakay
    pamelakay Member Posts: 6
    edited June 2013

    Lisa, I am having Taxol/Hercepting on the same schedule as you. I'm following this thread because I haven't found any other active threads discussing Taxol. 

    I just finished 4 dose dense treatments of A/C and will start the T/H on Tuesday. My understanding is that this is because of the aggressiveness of my particular type of cancer (looks similar to yours, ER-/PR-/HER2+, grade 3). I did see an article mentioned (earlier on this thread, I think) about a recent study showing weekly Taxol being just as effective as dose dense, but with less side effects. I plan to bring it up at my next appointment, and if I have problems with the Taxol I will probably ask to be put on weekly. 

     I'm starting the glutamine and B6 and B12 now in case I have a reaction to or any problems with the supplements. That way if I have any reactions after the T/H, I will know it's not the supplements. 

    I'm wondering how much b12 others are taking. I got a liquid Methylcobalamin form of B12. The bottle suggests a 250 mg dose daily. 

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

    PamelaKay~~I was told to take 100 mg of B6 twice a day, but all I could find was 200 mg. I still took them twice daily. It worked fine for me. The body gets rid of what it can't use anyway.



    After reading some people's struggles with dose dense Taxol, I was really glad I was on weekly. It was so much easier than AC.



    Blessings

    Paula

  • honeybair
    honeybair Member Posts: 234
    edited June 2013

    To avoid neuropathy, I was instructed to take 100 mg of B-6 3 times daily and so far, I have had no neuropathy.  To avoid constipation, take one capful of Miralax daily and one Colace or generic equivalent, both of which have helped me.  I have completed chemo and will continue the B_6 as insturcted.

    Since my cancer is recurrent from 11 years ago and is rather large and invasive, I was informed by my MO that removing all the nodes is the standard procedure.  I shared with her what the BS had told me the previous day in my visit with her.  I agree, 30% is a very large percentage.  I have also learned that DCIS, stage 0, which was my previous condition  has a recurrence rate of 1.5%.  Someone has to fall into those small percentages and we never know who that will be.  I recieved radiation but took no Tamoxifen.  I will never know if that decision caused my recurrence.

  • lpc
    lpc Member Posts: 39
    edited June 2013

    I met with mo today and he feels as if I will be okay with dd taxol. First infusion will be on Thursday. I started b6 and b12 today. Chemo brain wouldn't allow me to remember glutamine. He said he will reduce the dowager of taxol if necessary. I did fairly well with dd ac...only missed one day of work so hoping for the best.



    I really appreciate all the info I received here.



    Lisa

  • lpc
    lpc Member Posts: 39
    edited June 2013

    Darn auto correct....dosage of taxol



    Lisa

  • morwenna
    morwenna Member Posts: 204
    edited June 2013

    .... reducing the dowager might be helpful though! ;-)

  • 6cats
    6cats Member Posts: 199
    edited June 2013

    I start weekly Taxol on Thursday. My MO is very anti-supplement. Any recommendations (other than supplements)? I am especially concerned about neuropathy... does exercise help?

  • morwenna
    morwenna Member Posts: 204
    edited June 2013

    Well, I haven't taken any supplements, and I haven't had too much trouble. My feet feel a bit odd, kind of tingly, but not completely numb. They can be a bit sore if standing or walking for long periods, but oddly, walking does make them feel better from the numbness point of view.



    Exercise is also excellent for general morale and energy levels, and aside from walking I have been to deep water workouts, as there's no impact and you can work as hard as feels right. I'm just considering getting a bike too! :)

  • PatinMN
    PatinMN Member Posts: 784
    edited June 2013

    6cats, I'm passing along a link from Dana Farber regarding supplements for prevention or alleviation of neuropathy.  Maybe if you provide some documentation to your MO he will go along.  I used the B6 and glutamine, and it worked for me.  The article from Dana Farber also mentions accupuncture as relieving "pain", but I haven't heard of anyone using accupuncture for neuropathy.  (I hope the link comes through - some links I try to post come through incomplete and don't work.)

    http://www.dana-farber.org/Health-Library/Alleviating-peripheral-neuropathy-symptoms.aspx

  • CandyisDandy
    CandyisDandy Member Posts: 8
    edited June 2013

    My chemo pharmacist told me not to take too much B6 as it can CAUSE neuropathy. He said the max was 150 mg per day. Here's a quote from a quick internet search that also warns about overdosing:



    Dr. Andrew Weil says: Are there any risks associated with too much vitamin B6? The current recommended maximum daily intake is 100 mg. High doses of vitamin B6 can, over time, be toxic, and may result in nerve damage or numbness and tingling in the extremities that may eventually be irreversible. You should discontinue use of supplemental B6 if any unusual numbness develops in the body. Too much B6 can also cause oversensitivity to sunlight, which can lead to skin rashes and numbness, as well as nausea, vomiting, abdominal pain, loss of appetite, and increased liver function test results.

  • adagio
    adagio Member Posts: 713
    edited June 2013

    6cats - during chemo I had and still do have acupuncture every week because I was so paranoid about developing neuropathy. I find acupuncture very helpful and my MO actually did recommend it.  I did and still do occasionally get what I call a "taxol attack" which is tingling in my hands and feet and sometimes the outer side of my leg. I notice this is more likely to happen if I miss an acupuncture treatment. Just my 2 cents worth!!

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

    Candy~~My onc told me to take 100mg of B6 twice a day. That what my body didn't use would go out in waste through urine.



    Paula

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

    Here's some more info on vitamin B6.





    http://washingtonexaminer.com/article/2532298#.UcmsTTXcQks.facebook

  • septembersong
    septembersong Member Posts: 153
    edited June 2013

    6cats, 

    I'm one of the relatively few people (from what I can gather) who suffered permanent neuropathy from weekly taxol treatments. My advice is to raise the issue immediately with your oncologist if you have any symptoms of neuropathy. I had symptoms starting with my second treatment, and my dr. dismissed them, telling me that most neuropathy was short term and disappeared with treatment. Five years later, I'm still dealing with it. Persist if you have symptoms!

    Some doctors are so focused on treating the cancer (and of course that's what they're there to do) that they downplay what can become permanent side effects. I know striking a balance can be difficult to do. Advocate for yourself as best you can. 

    I tried acupuncture post treatment, but didn't get any benefit from it. It was lovely and relaxing, but didn't address my symptoms. 

    Good luck! 

    Ann

     

  • Romanticrose
    Romanticrose Member Posts: 13
    edited June 2013

    Hi Ladies...this is my first time posting on these boards... I started weekly taxol Yesterday...after having completed Ac three weeks ago...so far it is a little better as far as SE...but as I said this is day one after the first treatment...the steroid high is something...and have been having night sweats. My question is awkward and I have asked at the cancer center but they have not been wanting to give me alot of info... Wondering if Sex is able to happen on weekly taxol?On AC I was toxic for 7 days so we avoided sex for that long...Also asking about oral sex... My docs fear is of course pregnancy but condoms have worked just fine to avoid that for the 8 years since my last child was born... I am wondering if my bodily fluids would be harmful to my hubby while on this weekly dose? Not that sex is the biggest thing on my mind...but I love my husband and miss the closeness...and this has been a long ordeal since i was diagnosed in Jan... I have looked all over the internet but this is the only taxol weekly info i could find...

  • Deb3kids
    Deb3kids Member Posts: 1
    edited June 2013

    I look forward to hearing the answers to you questions Romanticrose! I have wondered about some if the same issues. I hope there is an expert out there who can fill us in.

    On a different note...I just had my 4th weekly Taxol today. Three fingers on my left hand have started tingling. It doesn't hurt or even bother me. Is this the beginning sign of neuropathy? If so, how fast does it progress. Any information would be welcome. Thanks:)

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