12 taxols, anyone? I can do this...! right????

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NatureGrrl
NatureGrrl Member Posts: 1,367
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

I've had three of 12 weekly taxols, I know a lot of you are on DD... anyone else on the 12 weeklies? (I think Jane108 is about done with hers?).  Today I have my 4th and I'm starting to feel like I can do this! because I feel pretty good today, but I have 8 weeks to go after this week and that makes me nervous.

I'm getting Taxol and Herceptin weekly, steroids were cut in half because of swelling, still getting other anti-nausea and allergy meds with my infusions.  The first two treatments were awful from the pain but I came up with my own pain management plan* that at least got me through #3 with much less pain... I'm going to continue with the plan to see if it continues to help.  I have to say, I feel almost normal after a week of walking, etc.  A few days I had aches but nothing like the first two weeks.  Is it normal for the pain to subside or is my plan helping?  Can I make it through the next 9 weeks with less pain??

I still am really tired over the weekend but that's why I have chemo on Wed. -- so I can work during the week and crash on the weekends. 

Now I'm starting to get neuropathy, which scares the heck out of me. It comes and goes so far but I know it's early for it even to be starting, right??   I'm taking all I can for that even though the evidence on the various vitamins and glutamine helping is mixed.  Won't hurt, might help! in for a penny, in for a pound!

Anyone else made it through the 12 weeks of Taxol?  I can do this, right?  I can do this... I can do this... I CAN do this!!

My mom has done Taxol twice with NO SE's except fatigue, so I was expecting the same thing.  Ha ha on me! :)

Thanks for your help and support.  I don't have an SO to lean on and my friends are mostly 100's of miles away so I lean on y'all a lot.  Thanks for putting up with all my posts.

Huge hugs to all of you... just need some shoring up today before I head into Infusion Land! :)

Carol

______________________________________________ 

*if you're interested, what I came up with for pain managment:

I take two 5/500 hydrocodones at bedtime, plus one 5 mg atavan.  Sleep pain-free and wake refreshed.  That helps TONS.  The pain-free part carries over into part of the morning.

I take one 500 mg tylenol twice a day (trying to avoid too much acetimenaphen).  During the day I also take 3-100 mg Vit. B6, 3-1000 mcg Vit. B12, 1 G. l-glutamine, one generic claritin at bedtime.

I walk at least once a day, for at least 10 minutes.  I walk briskly if I can, and more if I can, but slowly does it too.  I'm especially trying to walk chemo day and the few days after (it's probably all in my head but I feel like I'm "walking" that stuff out of my body!).

I'm back to drinking 96 ounces of water a day, to help clear the chemo out.  Or that's my theory :)

I meditate/visualize whatever helps me at the moment:  chemo cells melting, nerve cells growing strong, etc.

I do mild yoga/stretching as I can.

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  • konakat
    konakat Member Posts: 6,085
    edited July 2009

    Yes you can do it!!!!  I was on 3 weeks of taxol with one week off for 5 months and made it through.  I did get neuropathy but it went away for the greater part after taxol was stopped -- just sometimes my baby toes are numb, no big deal.  If you do have problems with neuropathy the taxol can be adjusted.

    The aches got me down but I handled them with pain killers.  I think your pain management is working -- my aches stayed the same right through, but were the worst at the beginning.  You will definitely make it through!!!

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  • cbm
    cbm Member Posts: 475
    edited July 2009

    Hi, Carol, nice to meet you. I had that same protocol from July 08 to January 08 and didn't have many problems with it.  I'm 57 and was in good health when I was diagnosed.  I found that as the weeks went by and I got farther from the A/C (had dose dense 4 times over 8 weeks), I felt better.  I cut back on the steroids also and was down to 1/3 of whatever I started with by the last two weeks.  I didn't have intense pain, though.  I did continue the white cell and red cell supports as needed and like you kept up the hydration plan.  I used only Ativan to sleep and though I had strong pain meds at the ready never used them, but I did use Advil, at times in fairly sizable doses.

    I was in physical therapy from the time I got my bilat mx stitches out, actually until now.  The dx was lymphedema avoidance but she also gave me infrared treatments on joints and muscles when they hurt.  I hadn't connected pain with chemo; I assumed it was from inactivity and tension.  It was not intense, but uncomfortable, and the infrared helped--a lot.

    I started getting mild neuropathy around week 8 and it stayed mild until the last week and then got a little worse.  I still have numbness around my toes but it is going away slowly.  I have none in hands--just the very tips of my fingers.  I did get toenail problems (blackening and partly detaching, and an ingrown toenail) but they are going away also.  I'm still on Herceptin (until November) and have had no apparent side effects from the infusions other than mild fatigue.

    The only thing I will say may be specific to me, but I found that walking tended to irritate the neuropathy.  The soles of my feet didn't like socks; I felt all the threads.  Getting better.

    Good luck to you; the weeks fly by as you count them down--so much easier than the A/C!

    I had an ooph/hyst 2  months after end of Taxol and while on Herceptin--no problems with healing or recovery.

    You will get through this with no problems; you are already almost there! 

    C

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  • LRM216
    LRM216 Member Posts: 2,115
    edited July 2009

    Carol - just want to remind you not to forget to include the 500 mgs. of acetominophen in each hydrocordone you take.  I don't want you to overload on acetominophen.

    Hugs,

    Linda

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  • NatureGrrl
    NatureGrrl Member Posts: 1,367
    edited July 2009

    Thanks, everyone.  I crashed today, durn benedryl :) but tomorrow should be a good day before the weekend longer-and-deeper fatigue crash. Up and down, up and down.  Never was a big fan of roller coasters! :)

    Konakat, thanks for your encouragement! I know many have done this before me and your words help.  I was so blindsided when I got hit by pain.  I'm doing better, though, and my oncol./staff is staying on top of this, and thank you for your positive words!  did you move back to Canada?  I would love to live there -- between the mountains and the climate (well, Vancouver), it's my kind of place :)

    cbm, thank you also... I'm 57 too so it's good to hear from someone my age, although in the long run, age doesn't matter with this disease!  I think I'm so distressed about the neuropathy because it started after my 2nd treatment -- how I wish it would have waited until my 8th!  But I'll keep plugging along and see what happens.I hope walking doesn't become painful -- so far, it actually has stopped my foot pain.  Walking replenishes my soul (deeply) as well as other parts of me so it's very important to me.  Thank you for the encouraging words!  I can do this, tears and all!

    And Linda, I'm only taking 1/2 the recommended daily dose of acetominaphen (including the hydrocodone), I deliberately saved some leeway if I need to take more... but so far what I'm doing is helping.  Hope you're doing OK!!!

    Hugs to all!! and thanks again!

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  • blondie45
    blondie45 Member Posts: 580
    edited July 2009

    NatureGrrl-I am pretty much right on schedule with you. I am getting 12 weeks of Taxol and had #4 on Wednesday (yesterday). I am asking the same question as you? Can I make it through. Though it is different than the AC, I still have some very annoying side effects. I have MASSIVE watery eyes that they don't have any idea how to help. The eye doctor put in punctal plugs on Friday and that helped for 2 days. I have good days the day after infusion and the next day, then back to 5 days of constant watering and pain. The eye doctor that put the plugs in wants me to call Monday if they start watering/hurting again. I am sure I will be calling if the pattern continues. Not sure what other ideas he has.

    Also I have now gained 8 pounds already and am not liking that one bit. I had just got down to the weight I should be at in April and then started this journey. Frustrating after working so hard to lose the weight and now gaining it back that fast.

    I am also taking B vitamins and l-glutamine in hopes of warding off the neuropathy. So far I had a small feeling of it one night but I have a LONG ways to go with 9 more infusions.

    Also having much more constipation on the Taxol than on the A/C.

    Do you also need to have radiation? It doesn't look like it by your sig line. I have to have 6 weeks of rads starting probably about November every day and that will be very tiring I think trying to work my job and get there every day for 6 weeks all right before the holidays. Hopefully my other side effects will be better through the rads though.

    Hope you are feeling okay today and take care!

    Dawn

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  • NatureGrrl
    NatureGrrl Member Posts: 1,367
    edited July 2009

    Dawn, we are right on the same track -- and almost the same dx... April of this year, same grade, stage, etc..  Have you had surgery?  I'll have mine this fall.

     My 4th Taxol was also yesterday (Wed.).  My steroids were cut in half because of swelling (lower neck, quite lovely, but better than chipmunk cheeks!) and I've been ok with that so the weight gain isn't as bad now. But argh! I'm hoping to maintain, rather than gain any more, and like you would like to lose -- was on track before all this hit!!!

    Radiation is still a "maybe" for me -- I have surgery after chemo (lumpectomy or mastectomy, depending on the lump size by then) and depending on the surgery, I'll have radiation. 

    Right now I feel like if I can get through chemo, I can do ANYTHING!! :)  

    Today I'm ok, still tired from the benedryl, tomorrow will be good! and then I'll be tired for three days... hopefully with pain under control, thanks to my Carol Ann's Personal Pain Management Plan :)  But the fatigue does pretty much knock me out for the weekend.  I will say the fatigue is better than with the A/C but the pain just plain SUCKS!

    I have some watery eyes but nothing like yours -- so sorry to hear about that!  Yikes!  It's always something, isn't it?? Just when I think I can relax I get pounded by something else.

    I had no bowel problems with A/C but have had some slight tendencys towards constipation (gosh, don't you just love talking about this stuff) :) with Taxol.  I'm taking generic Senokot-S every night, 1/2 dose, and so far that's working.

    Going through all this and working is hard, but sometimes it's nice to be semi-normal, so sometimes I like getting away to work... and I don't hesitate to pull a sick day, even if it means I have to make up the hours (I'm not full time so virtually no benefits).  Some days it just feels right to stay home.  Some days I don' t have much choice!

    Hang in there... take care of yourself... any time you need a hand-holding or hug, let me know... we can do this!   Even if we're crying and stumbling half the time!!

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  • blondie45
    blondie45 Member Posts: 580
    edited July 2009

    NatureGrrl-yes I have had my surgery, wanted bilateral but insurance would only pay for the side that was positive with the lump (still just hate saying the c word). I had a choice of chemo first but since they did not find mine on a mammogram (went every year for the last 7 years faithfully) I said no I want it off and within a few days I was in surgery. I don't regret it, though researching reconstruction now it is sort of getting me down as I am not sure my body can handle that extensive of surgery if not 100% necessary. I cannot have implants because I have to have radiation.

    I went off the pill 3 weeks ago and my mood and crying and hot flashes were almost instant. Of course cannot have hormones to help any of it. Oncologist said a few weeks ago there are antidepressants that help hot flashes and I didn't think I wanted to go that route but most likely am going to have to with how much crying I am doing (not only do we get socked with chemo, if we haven't gone through menopause we get all of those complications as well).

    I work at home in medical transcription and while it has been good in the fact that I can work since I only walk to the other side of my house, not getting out and talking to people more I think is not good either.

    Do you notice you started sleeping more when they cut your steroids in half? I only really have to nap a few hours a few days now and had to sleep seemed like all the time with the AC. Obviously they are giving me enough steroids thus the weight gain. Emotionally the Taxol is much tougher on me, though it could  mostly be also starting the menopause process now.

    You hang in there also and also let me know if you need anything!

    Dawn

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    CAROL & DAWN,

    Saw your posts and had to respond.  You guys already know that I did DD4Taxols and finished 1 1/2 weeks ago so I can't offer advice on your treatments, but did just want to offer some encouragement. You guys can do this - I KNOW YOU CAN.  Remember that saying? "Keep putting one foot in front of the other and soon you'll be walking out the door".  Glad you guys are close in treatments and can offer each other advice.  I think of you often and hope that you keep pushing forward.  HUGS, Dawn

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  • LRM216
    LRM216 Member Posts: 2,115
    edited July 2009

    Hey Carol - just wanted to say hi and let you know that I had my taxotere today (no 1 was Taxol, but she stopped it due to the neuropathy.  It went good, but we have to watch to see if it worsens the nueropathy, and if it does, she stops the last two treatments.  If it stays the same, then it's a go for the next two.  So we will see.  Have no godly idea what the dang side-effects will be this weekend, but she did up my pain meds to percocet which she wants me to take beginning Saturday and keep on taking them.  The downside to all this is that I found out having the taxotere, I MUST go back the next day for the horrible, disgusting, knocks me to the floor, Neulasta shot.  Oh but I wasn't expecting that.  Will keep you posted and you hang in there dear friend, you will get through this too.

    hugs,

    Linda

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    LINDA,

    I ended up having to do the shots too, onc said most women don't need them but my blood dropped after the 1st Taxol and so the 2nd was delayed 4 days for it to recover.  After that I had to do the shots.  Just tell yourself that if you take the shot you won't get delayed and you want to be able to stay and schedule and just get to the end.  Guess you and I are the exception to the rule. Hope you make it through the weekend without too much pain.  HUGS to you, Dawn

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  • Garciamx
    Garciamx Member Posts: 31
    edited August 2009

    Hello, I did 9 weekly Taxol treatments. I had them done on Friday & recovered over the weekend. I think I may have been too tired maybe twice during those 9 weeks and called out on 2 Mondays. But I made it...my last treatment was on 02/27/09, and what I remember the most was the fatigue it brought. I did also experience a tingling  feeling in my fingers. But thank goodness that has gone away. I also wish you luck! Maria

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  • Lhall
    Lhall Member Posts: 51
    edited August 2009

    Hi, naturegrrl

    I did weekly treatment for 12 weeks also. I felt pretty good a little tired the first week but good. And yes you can do this!!!!!!!!!!!! When I first started chemo I was on TCH and had a reaction to it so they switched me to Taxol and that was a breeze. I hope this helps.

    Hugs Lynn

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  • apple
    apple Member Posts: 7,799
    edited August 2009

    i've been thru it..

    not too bad at all with no nausea or lack of energy for me.. the worst part was the sore insides of my mouth.. i had to restrict my food choices (NO hot peppers) and moisterize the corners of my mouth constantly and wear chapstick.... but all in all, a piece of cake.

    one may have neuropathy in the hands and feet.. i drank lots of water, used moisterizer, took
    Glutamine (not that i recommend that,, i'm a pianist so i needed my hands to be superfunctional)) but it helped... took a small pain killer to keep the symptoms at bay.

    recoginizing the symptoms on days 1 to 4 is helpful in being able to fight them.

    good luck.

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  • ravdeb
    ravdeb Member Posts: 3,116
    edited August 2009

    I found the 12 weekly taxols to be pretty easy. Except for that crash after the steroids, I was feeling pretty good, walking about 4 or 5 kms a day. My hair started to grow back during this time and by radiation treatments I was able to remove my head coverings...bravely since my hair was white and growing in slowly...

    I had slight numbness in my toes which made going downhill (live in a very hilly area) a challenge but not too tough of one!

     I wish you well. I actually felt quite normal during Taxol after a terrible time on AC.

    I recommend that you speak with your onc about the supplements that you are taking along with the Taxol. Some oncs are not happy with that and some supplements, though they may make you feel better, could conflict with the treatment. Just a thought!

    Be well and good luck with your remaining treatments..

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  • Marjorie707
    Marjorie707 Member Posts: 31
    edited August 2009

    I've had 6 of my 12 weekly taxal treatments so far.  Doing pretty good.  I also started with some numbness in my fingers.  They started me on B complex vitamins. They do help! 

    I still get fatigued, but mange pretty well to work most days.  Today was an exception.  Just not feeling quite right. 

    Appetite is good and I manage to go for some walks.  I'm told by other survivors that helps a lot!

    My hair is also starting to come back in, but I'm told not to expect it to stay.

    Good luck with the rest of your treatments.  Count down each week!  Stay positive!

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  • Dragonfly1976
    Dragonfly1976 Member Posts: 1,637
    edited August 2009
    Just wanted to say that I still wonder if I can do this, and I have 2 left. The aches and pains drive me nuts, I can feel the numbness a little in my fingers, thinning fingernails, etc... However I keep plugging away, still working full time, and just ready to be done with this!! Good luck to you Smile
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  • sakura73
    sakura73 Member Posts: 467
    edited August 2009

    I have just had number 7 of 12 Taxols. Curcumin helps a lot with the achy fingers and feet. I get some mouth soreness and heart burn, but otherwise okay. My hair is also growing (though a very weird colour, and uneven over my head).

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  • angicpa
    angicpa Member Posts: 67
    edited August 2009

    Thanks NatureGrrl/Carol for this posting this question, and thanks everyone who responded.  I had my last A/C treatment today and will start the weekly Taxol + daily Lapatinib pills on August 28. My oncologist and the chemo nurses have been telling me that Taxol will be easy compared to A/C.  Maybe I will be a lucky one.

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  • angelsabove
    angelsabove Member Posts: 363
    edited August 2009

    I will be completing #9 of my 12 weekly taxols on Monday. So far it has been ok. I do feel tired and seem to have this acid reflux thing going on. I am starting to have the metal mouth taste, but no mouth sores at this time (Praise God). After I complete the next 4 taxols i then do 4 treatments of something every three weeks. I know it is three different drugs but not sure what they call it. I hear that one is REALLY hard..... I am just having more of a problem with this emotional roller coaster ride.....

     God Bless You All

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  • TexasRose
    TexasRose Member Posts: 740
    edited August 2009

    I've had 3 of my 12 weekly Taxol treatments. Tuesday will be #4. So far, so good for the most part. Some very minor bone pain and some fatigue but so much easier than AC was for me. My hemoglobin has dropped, but they have me on an iron supplement and I haven't missed a treatment yet. I'm trying not to get my hopes up, but my hair appears to be growing back also. It seems like I barely finish a treatment and it's time for another one! Guess that will make the time go by faster. No neuropathy yet. I do have a slimy, yucky mouth taste Ick! So ready to be done. 

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