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  • bonniemohr
    bonniemohr Member Posts: 1
    edited February 2009

    Hello Diane (and others from the TLC "tough ladies club")-

     I went through 4 rounds of taxotere/cytoxan last spring and unfortunately had about every reaction in the book PLUS SOME the folks at Dana Farber hadn't seen before...  I was referred to an acupuncturist - and the reduction of side effects was significant. The acupuncturist treated me for "general healing".  I was a skeptic at first - but discovered that 1 hour after the first treatment I COULD THINK!!!   My body's reactions to the drugs were significant and I would not have been able to finish treatment had this not worked.  I continued acupuncture through chest wall radiation, and was told that there had been a 70% chance of blistering because of my history - and since I'd managed to complete radiation treatments without having to stop, that the acupuncture had greatly improved my body's ability to heal after all this abuse.  It may not work for everyone - but it might be worth trying it once. ! 

    Healing wishes to you all

      

  • swest
    swest Member Posts: 140
    edited February 2009

    Bobcat - I don't have itchy palms but the bottom of my feet were itching the past two night.  What's up with this???????

  • swest
    swest Member Posts: 140
    edited February 2009

    Nikki - I understand you wanting to hold out.  That is a pretty important day.  I ended up shaving my head on day 15 after my first treatment.  I had the sore scalp (like a too tight pony tail) that I wanted to shave my head.  Also, I'm someone who wanted to control the shedding.  I could not have handled the hair falling out in clumps.   It's all a matter of what you can handle.  Did you get a wig that you could wear if you cannot hold out on the hair?  You will make the decision that is right for your situation.

    Congratulations on the baptisim!

    Sonia

  • nikkidurepo
    nikkidurepo Member Posts: 8
    edited February 2009

    thanks sonia!

    i do have a wig...i actually bought 3! i also have the sore scalp and the clumps are bothering me...i'll just see what i'll be able to handle..thanks again sonia!

  • otter
    otter Member Posts: 757
    edited February 2009

    Hi, all you TC warriors!

    I've been reading through this thread, and it's looking awfully familiar.  I finished 4 rounds of Taxotere & Cytoxan last June ('08), so I'll be coming up on my 1-year "starting chemo" anniversary pretty soon. 

    Someone asked a few pages ago how long it takes to feel "normal" again.  For me, it took around 3 weeks to get over the usual chemo-related SE's after my last round.  It would have been shorter, but I developed a low-grade fever (100.6+) around day 12 of rounds 3 and 4 and was on antibiotics for the "good" (3rd) week of those rounds.

    The weakness lasts awhile--maybe an additional month or so.  I was a lazy slug, though.  For someone in better condition pre-chemo, that fatigue might not last as long.

    I had no trouble at all with my fingernails or toenails, and I didn't use anything on them for prevention.  No tea tree oil, no hard-as-nails, ... nothing.  I just kept them clean and cut short so they wouldn't snag on anything.  There was a white band or line for each dose of chemo, but my nails never turned ugly colors or detached.  Someone here said her onco recommended using a dark nail polish.  That won't prevent the toxic changes that occur in the growth layer of the nail bed.  It will just keep you from seeing the color change that means something bad is happening and your nails are sick.

    TC is a funny chemo regimen--the SE's aren't entirely predictable, and they aren't necessarily the same with each round.  It is do-able, though; and the long-term effects on the heart are supposed to be much less than those of Adriamycin.  That's why I ended up getting TC instead of AC.

    You should see my hair!  Pre-chemo it was a stick-straight, chin-length bob.  Now it's short and super-curly.  Totally not me, but it's just another step in this adventure we're on.

    otter 

  • Firni
    Firni Member Posts: 521
    edited February 2009

    Nikki, I was only able to tolerate the hair shedding for about a day and a half. It was just flying around everywhere, getting in food and stuff.  I did go out to lunch before I had it shaved off.  I wore a hat and that pretty much kept in under control for that little while.  If you can't want to shave before the baptism, you might find a pretty hat to help control things for the event.

  • Mimsi
    Mimsi Member Posts: 3
    edited February 2009

    I took TC 4 rounds beginning November of 2007. I completed it in late January 2008. I have triple negative breast cancer..with a very nasty biology (highest grade and highest invasiveness) and the prognosis wasn't good without the chemo. I had a mastectomy as well. I did fine with it. It was not pleasant, but not as bad as I had imagined. My finger and toe nails did not turn black or fall off nor did I get much neuropathy (a little in the feet).  I did have diffculty with the neulasta shot the first time especially bad. I had chemo on Fridays and the shot on Mondays. On Thursday (Thanksgiving night) the first time I woke up at 11 pm screaming in pain. The pain in my hip and pelvic area was so extreme I could not be still. It felt like a shovel digging in my sacrum area. Nothing stopped it. It lasted about 12 hours before I took enough pain meds to stop it. (I didn't have anything but darvon due to allergies to pain meds). The next time it was less painful.

    I also had very low red counts after the 2nd and had difficult walking and doing things. I mostly sat in the chair and read novels for months. Lucky for me I could work from home during those times.

    My hair came out beginning on day 13..just like they said. My doctor told me not to shave it as razor burn could result in a bad infection due to low immune system. I just cut it as short as I could with scissors and ran my hands through it every few hours  over a trash can or the potty. It was fine. I thought I wanted a human hair wig but bought a synthetic due to recommendations of the shop owner who is a nurse as well. I got a Rachel Welsh .. it was nice much to my surprise. It was hand-tied which I highly recommend as it is not hot nor heavy and your scalp shows through so it doesn't look so much like a wig.  My eyelashes and eyebrows did not come out until over a month AFTER I finished my chemo.  My doctor was surprised..said I just had to be different!

    In looking back, it went faster and better than expected although it was really not fun. When you read what could happen to you and what does happen to most you think you can't face it. IF you face it looking for peace and joy, you will make it. Just remember to count the blessings that you have with friends and loved ones and you will come through.

  • Mimsi
    Mimsi Member Posts: 3
    edited February 2009

    Hi Ottor,

    I too had the white bands and my straight chin lenght bobbed hair is now curly as well. I don't know what to do with it!

    After a year, I still have to go home and relax on weekends after working all week. I am better each month, but my doc said that she had known some who bounced back faster and some who were still fatigued after 2 years. She thinks it has a lot to do with your own cancer and your own body's abilty to rebuild.

  • mimiwhite
    mimiwhite Member Posts: 7
    edited February 2009

    Hi Snowbird, I completed TC (4 treatments) 02/02 and my eye has been twitching since.  I was so happy to throw away my steroid bottle!  :)

    Best wishes everyone.

    Mimi

  • nikkidurepo
    nikkidurepo Member Posts: 8
    edited February 2009

    hi firni!

    that's a good idea with the hat...i might just do that. thank you firni!!!

    hugs,

    nikki

  • swest
    swest Member Posts: 140
    edited February 2009

    Congratulations Mimi!  My last treatment is tomorrow.  I'm kind of giddy right now.  Ready to get it over with. I hope you have little or no SE's!

  • flmomof3
    flmomof3 Member Posts: 12
    edited February 2009

    I laughed when I saw you bought 3 wigs! I bought mine today...I brought my 3 year old with me so that I wouldn't cry ...she thought mommy looked so silly...I am a brunette and they only had blonde ones for me to try...mine won't be ready until Wednesday which will be day 15 SO i left with an old lady looking turban thing and a cap to wear to bed.  I cut my long hair short right after surgery but now I realize there is still a lot of hair left on my head to fall out.  I think I will let my hairdresser have at it this weekend.

    It is so comforting to see so many people that have the same crazy symptoms....The worst for me was the bone pain...mostly in my back and hips...I really felt like I had been run over by a large semi! Thank God that is gone now.... I am a hypochondriac anyway...so when my scalp HURTS, and my fingernails ache....i think I might be a little crazy!

    Thanks to all for posting....i feel a little less lonely in this process...

    Sue from Florida

  • BooBee
    BooBee Member Posts: 288
    edited February 2009

    I have the eye problem as well.  Had an appointment with the eye Dr. today and he said it's called Myokymia...AKA eyelid spasm sometimes seen in chemo patients.  He gave me over the counter eye drops to moisten my eyes and it seems to help.  Ono says it should go away after chemo.  The triggers that make it worse  for me are sneezing and rubbing but I tried the eye drops and have had no problems so far tonight.  Try this 3 times a day and let's compare notes. 

    I thought I was the only one with this problem. I looked like Mr. Magoo flirting with a lamp post.

  • BooBee
    BooBee Member Posts: 288
    edited February 2009

    Off of Google

    Background

    Myokymia is the spontaneous, fine fascicular contractions of muscle without muscular atrophy or weakness. Eyelid myokymia typically involves the orbicularis oculi muscle of one of the lower eyelids; occasionally, the upper eyelids also can be affected. In most cases, eyelid myokymia is benign, self-limited, and not associated with any disease. Intervention is seldom necessary. Rarely, eyelid myokymia may occur as a precursor of blepharospasm, Meige syndrome, hemifacial spasm, and spastic-paretic facial contracture.

    Pathophysiology

    The pathophysiology of typical eyelid myokymia is not well understood. The focus of irritation is most likely the nerve fibers within the muscle. However, pontine dysfunction in the region of the facial nerve nucleus also has been implicated. Possible precipitating factors include stress, fatigue, and excessive caffeine or alcohol intake.  (sounds par the course.) Renee

    Frequency

    United States

    The incidence and prevalence of eyelid myokymia are unknown, but symptoms of eyelid myokymia are not infrequently encountered in the ophthalmic clinic.

    Mortality/Morbidity

    Eyelid myokymia is a benign and self-limited condition in most patients.

    Age

    Eyelid myokymia may occur at any age.

    Clinical

    History

    • Patients with eyelid myokymia usually note sporadic "jumping" or "twitching" of one of the lower eyelids. The upper eyelids also can be involved. The irregular contractions are usually unilateral and may occur intermittently for days to months.
    • In rare cases, the contractions may be severe enough to move the eye to produce oscillopsia.
    • A history of stress, fatigue, and excessive caffeine or alcohol intake may be present.

    Physical

    • Fine contractions of the orbicularis oculi may be visible, if the patient has the contractions during examination.
      • If present, the contractions are usually intermittent and are more apparent to the patient than to the observer.
      • The symptoms often improve when the eyelid is pulled manually.
      • Rarely, the contractions may be vigorous enough to cause movement of the globe, producing fine nystagmuslike eye movements.
    • If the eyelid myokymia is associated with contraction of other parts of the face, blepharospasm, Meige syndrome, hemifacial spasm, and spastic-paretic facial contracture should be excluded.

    Causes

    The cause is unknown but may be associated with stress, fatigue, and excessive caffeine or alcohol intake.

  • Snowbird
    Snowbird Member Posts: 26
    edited February 2009
    ReneeS, thanks! I'll try the drops and hope that this too is temporary...  One day closer...  Cheers!
  • kt57
    kt57 Member Posts: 75
    edited February 2009

    Bobcat: I've had itchy palms and soles of feet -- happened day 12 -14 of first cycle and day 17-20 of second cycle.  I used triamcinalone cream ( prescription cortisone cream) and it helps alot.  Just got third round of chemo yesterday and the mega-steroids seem to help too. I;ve also had some mild neutropathy in hands and feet with each cycle -- I like to believe the itching as the neuropathy eases is a sign of healing. 

  • nikkidurepo
    nikkidurepo Member Posts: 8
    edited February 2009

    ok y'all...i can't stand it anymore...i'm shaving my head tomorrow.my husband will be coming home and he wanted to shave his head also. i thought maybe i could hold out until after my daughter's baptism, but the shedding is just out of control. hair was landing in my baby's mouth! did you ladies have headaches as well?

  • ann-idiot
    ann-idiot Member Posts: 41
    edited February 2009

    Hi Nikki- New to the forums on this sight but I've been watching/reading your posts - I'm due to start chemo next month (decided to to rads first and just at the end) I think you'll look awesome with a buzz cut! And...you'll match your baby! LOL! Wear that big smile and a big brimmed church hat to match for the baptism and walk proud. You are the stuff super-heros are made of. Rock on.

  • nikkidurepo
    nikkidurepo Member Posts: 8
    edited February 2009

    hi ann!

    thanks for your words of encouragment....and thanks for making me laugh!!!!you're right...me and my baby will be matching...and my husband too!!! We'll be the bald-headed family! you think it would be too much (or cruel) to buzz our dog's head too?!?LOL!

    thanks again ann! howz it going with rads?i'll be doing that when i'm done with chemo.keep us posted...and welcome to the forum!!!

  • kathimdgd
    kathimdgd Member Posts: 84
    edited February 2009

    Hi everyone,

     I havn't been on this board for a couple of weeks.Looks like a lot of newbies have joined us,so welcome,sorry you have to be here though.

    I finished my last chemo #6 on the 5th of this month,and have been sick and very weak ever since.Then to make matters worse i got a cold on top of it.Oh well,this too shall pass!!

    I also had the twitching eyes,and my eyes tear like crazy,drops don't seem to help.I have extreme diarrhea with each and every chemo~~~~~~~~but i got thru it all and so will you.

    DH buzzed my hair on the 17th day as it was falling out by the handfuls.I left a trail everywhere i went,so i told him time to cut it off.My nails are grey half way up from the cuticle,with the thumbs being the worse.One fingernail has  a red streak under it.

    Good luck to all of you still going thru this,you will get thru,it's very doable.

    Kathi

  • LASHON2008
    LASHON2008 Member Posts: 13
    edited February 2009

    Hi ladies.. sorry it has been so long since my last post. thank you for all the prayers and kind words.. well i had my drains taken out a week after surgery.. I was so happy.. felt like it was buring my skin.. well teh cancer that they got out during sugery was 2cm. way smaller than the 7cm that was there in the begining.. i am stage 4 cancer. i dont have it in any of the major places like the brai, kidney, bones, etc. but since it was in my superclavicular (i think that is how you spell it) and under my chin thats what makes me a stage for. They removed 8 lymphnodes and 4 was postive for cancer. the personality of my cancer changed. I was er+ now the cancer it er-. so now it makes everything negative. I dont know what that means for me really.. I still have to take the tamoxifen daily. I will see what my onc says when i go on monday.. so next i have to have another pet to make sure nothing has spread since my last one in december then i will be starting radiation.. so wish me luck ladies.. god has bought me this far.. i know he will continue to bless me.. I will continue to keep you ladies in my prayers.. please keep me in yours..

    Oh my hair is starting to grow back so i am so happy!!!

  • BooBee
    BooBee Member Posts: 288
    edited February 2009

    We've been worried about you Lashon.  Glad you checked in.

     Renee

  • ktym
    ktym Member Posts: 673
    edited February 2009

    Nikki, my headachs stopped once the hair was done falling out.  Wierd.  And I agree I think you'll look great with a buzz cut. 

    Kathi, picked up a cold this week myself (day 14 of round 2) its miserable.  People thought I was being paranoid telling everyone who thought they may be coming down with something to stay away.  My husband is now realizing exactly why I've been so paranoid.  Colds are bad enough, during chemo-yuck.  I think there should be a rule of nature that it can't happen and we're immune to colds and flu during chemo. 

    Lashon, thinking of you and best wishes on your scans 

  • flb1011
    flb1011 Member Posts: 6
    edited February 2009

    Hi Ladies!

    I have just tried to read thorugh this wonderful, thread.  I didn't get quite through all of it though, so If I repeat a question, please forgive me.

    I was all prepared to start 4 rounds of Cytoxin and Taxotere yesterday.  I had a terrible staff infection that required a long hospitalization two weeks after my double mastectomy, so my chemo was delayed over a month, and I was very anxious to get the next 12 weeks over with.  Calculated that my hair would be grown back long enough to shed the wig for a long planned cruise at the end of the year.

    Anyway, I went through the Cytoxin fine.  They then hooked me up to the Taxotere, told me they were starting the drip very slow, and if I had any funny sensations to let them know.  The nurse started it, walked away and within 30-60 second, in rapid successtion, I got unbelievable pains in my lower back area that sat me up like a ramrod.  I noticed my upper body and face were literally on fire, and then my chest began to hurt terribly and I stopped breathing.  The nurse was called by another patient who saw this and they called a code and did whatever and in a few minutes I was ok again.  The pain stayed about 15 mintues, but the breathing got better.

    The doctor said this was an extreme reaction the Taxotere they see in about 20% of cases, and he will not be giving it to me now.  I will have to start a new regimen with somehting else in 3 weeks..  I was under the impression that since I took FEC the first time I had breast cancer 6 years ago, that Taxotere was the best chemo for me this time.

    So I am upset first that I won't be able to get the best for me, plus, and this pales in comparison, but now my chemo time will be delayed and since the Cytoxin will make my hair fall out anyway, I'm without hair that much longer.  Plus the Taxotere would have been only 4 doses, and the nurse said the replacement would probably require 6.  I feel like nothing goes right.

    Has anyone had this happen to them, and if so, what drug did they change you to?

    Thanks,

    Fran

  • Firni
    Firni Member Posts: 521
    edited February 2009

    My god, Fran.  That is the worst reaction I've heard of to the Taxotere.  Mine has been going fine so I can't really answer your questions, but I feel so bad for you that there have been so many delays and complications.  I sure hope it all gets straightened out and you can just get on with it. AND get on the cruise.  Hair or no hair.

    Nikki, I was wondering how long you'd be able to go shedding all over the place.  Once the hair is gone, it's such a relief.  And a pretty hat for the baptism is still a great idea :)  I'm not so sure about the dog's head tho.  Will he wear a hat?

    Lashon, I'll keep you in my prayers that your scans come out great!!!  Very glad the tumor was smaller.  Do they think the chemo changed it from ER+ to ER- ?   

  • mimiwhite
    mimiwhite Member Posts: 7
    edited February 2009

    Swest congratulations to you!!   It took a week out of my last Rx to get excited. 

    There is an end to chemo. :)

  • mimiwhite
    mimiwhite Member Posts: 7
    edited February 2009

    Renne S thanks so much for the good info on eye twitching.  I cannot imagine stress in our lives? ;)

  • mimiwhite
    mimiwhite Member Posts: 7
    edited February 2009

    Nikki I hope you are doing well.  The hair is a huge hurdle, but you do get good relief after it is cut.  Really. 

    Fran and Lashon, I am very sorry you girls have so much to think about.  Just to let you both know, another person is thinking about you both and saying a prayer at this moment.  Best wishes, ladies.

  • ktym
    ktym Member Posts: 673
    edited February 2009

    Fran, I am so sorry that happened to you.  If I could reach across the internet to do something to help I would

  • thegoodfight
    thegoodfight Member Posts: 124
    edited February 2009

    FRAN.......................I HAD TO SWITCH FROM TAXOTERE..............

    I know that each case is individual and I had to be taken off for a completely different reason.  After two treatments o TC, I developed severe "glove" syndrome also known as hand and foot.  My palms, sides of hands and knuckles all got purplish red and the skin was peeling off.  My feet started peeling too, but no redness.

    They determined that the culprit was the taxotere.  They switched me to TAXOL which is a cousin drug made from the same tree.  I was able to get in a lower dosage and they gave it to me every week for 6 weeks.  Maybe that is what they mean by six sessions.  I wasn't really in chemo any longer if you add the time after the last session till you are truly done.  Bacause it was weekly and  a lower dose I had no down time, and when it was over, it was basically over.  Well, except for the rush of cumulative effects that showed up a few weeks after chemo, but it was really just fatigue, which I hadn't really had yet, and some real achiness in the bones for a couple of weeks.  Other than that I felt great.

    Let me know if the taxol is what they go with.  They said it is just as effective.

    Caren

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