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Taxotere, Carboplatin and Herceptin

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Comments

  • YaYa5
    YaYa5 Member Posts: 532
    edited October 2011
    amelie, i start infusion monday at 9:30 AM, central standard time.  what time will you be in the chair?  i'll definitely be holding your hand and hoping you have minimal SE's, if any.  i think we can both count on sleeping a lot and felling weak and shaky.  hopefully, that will be it.  i've had one fingernail that is funky and i'm not sure if it's TCH or not.  it was definitely infected, took antibiotics, but it's still red and very tender.  no sign of lifting, though.  
  • specialk
    specialk Member Posts: 9,262
    edited October 2011

    amelie - I used one tab of Acetyl L-Carnitine, 30g of L-Glutamine (10g, 3 times a day dissolved in a hot drink, I used hot tea) and a tab of B-6.  My fingertip tingling went away between tx and I did not get numb feet until #5 and it is now gone at 18 weeks PFC.

    Interestingly my eye tearing went away after TCH at about the 6 weeks PFC point, but it seems to be back intermittently while on H only.  But I also get the runny/stuffy nose so maybe that whole face area is problematic right now, ha!

  • lago
    lago Member Posts: 11,653
    edited October 2011

    I use Acetyl-L- Carnitine… actually still take it because it's a memory booster. I swear it helped. I only had issues with the left heel.

    If you have any signs of neuropathy you MUST inform your onc. If it's bad enough  you onc will consider lowering your does so you don't have a permanent issue. Yes this is important. They want to know.

  • Grimbol
    Grimbol Member Posts: 139
    edited October 2011

    I have told him each time about my neuropathy, but while it goes away/subsides before the next tx he seems ok to continue.  I must admit this time after no 4 I am miserable with my feet, although my fingers aren't too bad.  I even tried buying those memory foam slippers from Brookstone today, but they really don't help at all, so i think they are going back!  Percocet is helping though and having them raised too feels better.

  • stlcardsfan
    stlcardsfan Member Posts: 227
    edited October 2011

    Special K - yes to the OBS meds, have already tried the generic version and it caused side effects.

    So switched to a two week trial of Toviaz - no help. Now on Vesicare which seems to be helping. It just causes side effects like dry mouth, dry eyes, dry everything. I have seen and spoken with two doctors so far - one says yes it could be an after effect of Chemo, the other says maybe. I was done with chemo 4/28/10, and the problem started 7/7/11.  Going to the bathroom more than 20 times a day is no fun! 

  • lago
    lago Member Posts: 11,653
    edited October 2011

    My neuropathy symptoms would go away too until tx3. The buring would always go away though.

  • specialk
    specialk Member Posts: 9,262
    edited October 2011

    stlcardsfan - OMG! 20 times a day - that is like a perpetual UTI!  I am so sorry!

  • zumbagirl
    zumbagirl Member Posts: 250
    edited October 2011

    anyone become nuetrapenic 4 weeks out from your last chemo. that is where I am at right now. I am so bummed. My kids are both sick, and I really hope  I don't get sick. My fingernails are so bad, they are all really sore and lifting, and about three of them have a liquid yellow stuff coming out of them, so I saw the oncologist nurse, and she has me soaking my nails in half vinegar, half regular listerine, and it has helped with the pain, and taken all the yellow liquid out.

  • anafoefana
    anafoefana Member Posts: 109
    edited October 2011

    Zumbagirl,

    Sorry to hear you are having issues!  I hope you do not get sick either!  I hope the nail thing resolves soon!  How painful!

    I have my last TCH  today and I am worried because my red counts are lower than they were before my transfusion and my liver enzymes are twice what they should be.  My pottasium levels are low also and I have noticed my thyroid is swollen. I am hoping I won't need another transfusion. Yuck!

    I emailed my onc because she is out of town. The nurses at the infusion center are wonderful and I know they will be on top of things, but I am worried about the effects after today.

  • Wendyspet
    Wendyspet Member Posts: 103
    edited October 2011

    Zumba - As I remember, we were pretty close to the same TCH schedule.  My last was September 22.  I am having nail issues, too.  Oozing, discolored and tender.  They look terribly bruised, and then turn white and start to lift.  I haven't talked to the onc yet, had cardiologist appt and echo this week for decreased EF, and I'm tired of doctor's appts!!

    But the eye tearing has stopped, and things taste good again.  I still have 5 or so pounds too much belly!

    Ana - hoping that since you are so close to done, they will go forward.  Maybe your numbers have improved since your last blood draw?

  • omaz
    omaz Member Posts: 4,218
    edited October 2011
    Wendy and Zumba - Did you ice your fingernails?  I am just curious if you have the trouble now even though you iced.
  • YaYa5
    YaYa5 Member Posts: 532
    edited October 2011

    i'd like to know the answer to omaz's question, too.  thank you!

  • Wendyspet
    Wendyspet Member Posts: 103
    edited October 2011

    No, I did NOT ice.  But I hadn't had these kinds of fingernail problems until after treatment #6, so it really wasn't high on my radar.

  • omaz
    omaz Member Posts: 4,218
    edited October 2011
    Wendy - I hope they start to feel better soon!
  • lago
    lago Member Posts: 11,653
    edited October 2011

    I started icing my fingernails as soon as they started to hurt after tx3. I don't think it  made one bit of difference for me but I got this issue really bad. I still have several fingernails lifted and a few of my toenails will be f-d up forever. At least they don't hurt.

  • anafoefana
    anafoefana Member Posts: 109
    edited October 2011

    I iced as soon as I heard I should and did so from # 2 on.  One of my nails has a purple tint to it, but I have not had any other problems. No lifting or hurting.

    I had my last treatment today.  Hoping the next few days will be uneventful. 

  • paulamati
    paulamati Member Posts: 12
    edited October 2011

    I DID IT!!!!!...my last TC was yesterday :)  so happy you cant imagine.Now wait for the SEs and hope they wont be so bad like last time :( . Today I had my scan for my radiation that will start in 3 more weeks aprox , I will have 20 sessions, not so bad.

    Thanks everyone for give me the courage to keep doing this!!!

    Hope everyone  is feeling good!!

  • omaz
    omaz Member Posts: 4,218
    edited October 2011
    Congratulations paulamati - Whoo Hoooo!!
  • specialk
    specialk Member Posts: 9,262
    edited October 2011

    paulamati and anafoefana - Yay!!!

  • omaz
    omaz Member Posts: 4,218
    edited October 2011
    anafoefana - I missed that you finished - Congratulations!!!  Wishing you an uneventful week.
  • YaYa5
    YaYa5 Member Posts: 532
    edited October 2011
    anafoefana and paulamati, YAY for you!!  it must be a wonderful feeling.  i hope neither one of you have bad side effects.  
  • TonLee
    TonLee Member Posts: 1,589
    edited October 2011

    Hi ladies,

    I talked with a Naturopathic Dr (ND) and thought I'd pass along what he recommended for me.

    First there is a difference between Acetyl-l-carnitine and L-Carnitine (who knew?)...Acetyl crosses the blood/brain barrier and is good for cognitive issues.  However L-Carnitine protects muscles which of course includes the heart.

    (I have heart damage from Herceptin and talked with the ND about ways I might boost my body to help repair it.)  He said if I'd have come in sooner, while on TCH he'd have recommended:

    1. 1500-2000 mg of L-Carnitine (liquid, guess that's very important) every day on an empty stomach to help the body protect muscle tissue from the chemo's tear down, but mostly for protecting the heart.  Vitamin C is essential to L-Carnitine working well in the body and water soluble so hard to get "too much" of it.  So eat lots of fruit, or chew a few tabs.

    2.  200-400 mg of CoQ10u (liquid is best, but I'm not paying $50 for it!  So I take liquid tabs from Vitamin World) to keep the heart strong during tx.

    3.  Iv nutrition with focus on riboflavins, and blah blah blah

    There comes a time when talking "natural" remedies that I begin to tune it out.  Especially if it involves

    1.  Lots of money

    2.  Invasive tx (hooking me up to an iv is invasive to me...lol)

    So honestly I wouldn't have done #3 ...

    Anyway, I'm on 1 and 2 now (but a little higher for the Carnitine)....and best of all, the Cardiologist consult (phone haven't actually met him yet) said he recommends those two as well!!  Especially to women taking chemo...in fact he called CoQ10 "VITAL" for Herceptin/Adrymiacin users (agents known to be toxic to the heart in some people).  And said that L-Carnitine (not acetyl) also is used to reduce fluid in the body (which is hard on the heart)!  Wish I'd have known that during chemo....

    Because there is damage to my heart one of the SE is leg swelling...not the painful Taxoterrible swelling, but swelling.  I started this regimen last week and WHOA!!  I've lost two pounds in fluid already, and my pants are fitting better in the leg area as I write this....not because my heart is miraculously better (I wish!) but because the Carn. acts like a mild natural diuretic.

    I buy both items at Vitamin World.  They usually have a 50% off coupon in the paper on Sundays and if you sign up to be a member (free) they send coupons to your house and on email!  Oh yeah, I'm allllll about the coupons.

    I don't know if during chemo, reading something like this would have made me try it, but I'd have at least liked to have known.....It never occured to me to ask to see a Cardiologist.  Of course, like the majority of women who take Herceptin and do fine, I didn't expect to have an ounce of heart trouble from it either.

  • Amelie_Rose
    Amelie_Rose Member Posts: 84
    edited October 2011

    Congratulations Anafoefana and Paulamati!  How wonderful that you are done!  Have a minimal SE week!

    TonLee, thank you for the L-Carnitine info.  It's good to know about all of this. What is the difference between L-Carnitine and Acetyl-l-Carnitine.  I thought they were the same thing.

    Well, I found out today that my counts (platelets and red cells) are too low to have my treatment on Monday as scheduled.  They want me to have a blood transfusion and I am kind of freaking out.  Has anyone had a bood transfusion before?  How safe is it and how did you feel?  How common is this problem with the TCH regimen?

    Yaya, I guess that means we will no longer be on the same schedule.  I was so looking forward to finishing on November 14th!  Good luck to you on Monday. I'll be thinking about you.

  • Grimbol
    Grimbol Member Posts: 139
    edited October 2011

    Thanks Tonlee for the info, I will go shopping this afternoon!  My EF rate was only at 55% when I started this so I am  a bit concerned at how well I'll fare thru it all.  Does anyone know if the oncs ever object to taking these things, do I need to ask first?  Just wondering.

  • omaz
    omaz Member Posts: 4,218
    edited October 2011
    Grimbol - I would ask.  It seems that each onc is different.  I was advised not to take coQ10 during chemo but ok during herceptin only.
  • TonLee
    TonLee Member Posts: 1,589
    edited October 2011

    Amelie, I covered the difference in the previous post :)

    Grimbol, always ask your Onc.... My Onc was ok with certain supplements (both of these were fine by him)...his biggest no-no was green tea of all things!  Which he didn't bother to share with me until tx 3 or 4 (can't remember)...and I'd been drinking gallons of the stuff!!  lol

  • AmyIsStrong
    AmyIsStrong Member Posts: 426
    edited October 2011
    TonLee - thanks for the info. Just bought a bottle of L-carnitine at the health food store today based on your rec.  I hope your new supplement regimen helps repair the cardio damage from H.  I wouldn't have done the IV nutrient thing either. No way.
  • Grimbol
    Grimbol Member Posts: 139
    edited October 2011

    Green tea, oops, I don't drink a lot but I have started drinking that.  Isn't that supposed to be good for you anyway?  Oh well, it's a bit like the flu shot I guess, each Onc is different.  I will check with him before I take anything, thanks for the advice.

  • TonLee
    TonLee Member Posts: 1,589
    edited October 2011

    Amy,

    You're gonna looooove what it does for your muscles!

  • YaYa5
    YaYa5 Member Posts: 532
    edited October 2011
    amelie, dang.  i'm so sorry you have to postpone your treatment.  my onco told me that if my counts went too low, he'd do procrit.  from what i've heard, a blood transfusion is better, but i've never have one so i can't help.  please let us know how you're doing .  i absolutely do NOT want to do chemo again on monday.  i dread it like the plague.  keep in touch and good luck.  lots of hugs to you.

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