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Taxotere, Carboplatin and Herceptin

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Comments

  • specialk
    specialk Member Posts: 9,261
    edited April 2013

    latte - A number of us that have had Carboplatin have continued ringing in the ears.  For me, it is not something that keeps me from doing anything, it is more annoying than anything else, but it appears to be here to stay.  If it happens you should notify your onc because they may adjust dosage as it is a neurotoxic sign.  Here is a link with some other SE.  I agree with lago, most of my SE seemed to come from Taxotere.

    http://www.nlm.nih.gov/medlineplus/druginfo/meds/a695017.html

  • Jinkala
    Jinkala Member Posts: 133
    edited April 2013

    I had really bad swelling/water retention about a month after my last TC.  My MO gave me a couple days' worth of diuretics and that helped a lot.  It's mostly gone now though I do have occasional issues in my hands and feet.  I try to drink lots of water which seems to help.  Oddly, my 'worst' spot is my right hand which is the opposite of where my lymph nodes were removed.  (of course that's the hand/arm that gets all of the IV sticks now.)

    My MO was concerned about the possibility of a blood clot causing the swelling though and sent me for a MUGA scan about a month before I was due for a routine one.

  • lago
    lago Member Posts: 11,653
    edited April 2013

    Jinkala I also find that exercise helps a lot! It keeps the fluids moving. The worst is sitting all day.

    Latte I changed my photo since then. No more wig and a few pounds heavier. Surprised you recognised me. I stick around to support others. Sucks that you are going through this journey again. I think we started this nightmare about the same time. Even though I was officially diagnosed in July I knew I was screwed in June 2010 just like you.

  • Jinkala
    Jinkala Member Posts: 133
    edited April 2013

    Yeah, I tried getting back into my daily walks (slowly) but then I started getting big bad blisters on my one foot and lots of peeling.  Of course the recommendation for that is to stay off my feet.  Sometimes I feel like I just can't win. :P   I think the foot is finally starting to clear up a little so I may start taking little walks again during work breaks next week.

    On the plus side, a few people have commented on my hair growing back because they can see tufts of it sticking out from the edges of my scarves.  It's still really short of course but I could go out without a head covering if I wanted to.  I just don't like how I look with such short hair so I know I'd feel self-conscious.  Pretty much, if I'm happy with how I look then I don't care about what other people might think so I just have to wait until I have enough hair for me to like it.

  • moonflwr912
    moonflwr912 Member Posts: 5,938
    edited April 2013

    Hey, Jinkala, just a thought? My haur came in curly, I like it. I have had short hair for years. But perhaps, a stylist could help it look better. Mine sure did, it looked so much better after just a few snips, and she didn't even charge until it got longer.

  • lago
    lago Member Posts: 11,653
    edited April 2013

    Jinkala it's not the short haircut it's how you put on the make up. Trust me. My hair was shoulder length. You can see I keep it short. When it was growing in I didn't have the long bangs I have now. This is your time to try something new. Go to the make up counter and have them make you up (for everyday, not evening out). You'll see what I mean.

  • Jinkala
    Jinkala Member Posts: 133
    edited April 2013

    Naw - it's still too short to do anything with - about a half inch maybe.  It just lays mostly flat except for a couple of places where the 'grain' changes and makes a small cowlick.  I don't wear make-up at all.   I just don't have the time or the inclination to mess with it.  I just feel more comfortable right now keeping it covered with a scarf/bandana.  I used to wear them off and on for years so the look is 'normal' to me.

  • Sickofpink
    Sickofpink Member Posts: 38
    edited April 2013

    Yay for al the good news here!

    Glad it's sunny in Buckye country(my old home) - cloudy n LA.

    Finally starting to feel fingers and toes again 7 weeks pFC. 4 weeks onto rads.  Nails gross, no hair growth , eye tearing slowing, tired, uncoordinated.  

     By the time I get all my doc appts & errands done and settle in to work, the window of energy & focus is slipping...

    Anyone else  feel like a marianette trying to pull your strings all together to get everything working at the same time, but something always slips?

    xo

  • specialk
    specialk Member Posts: 9,261
    edited April 2013

    sickofpink - believe it or not, you are right at the edge of starting to feel better.  I remember feeling so crappy and dragging myself around.  I had gotten into the habit of not listening to the radio in the car because it just seemed like noise to my poor overworked brain.  Gradually I started turning it on again - probably about 8 weeks PFC.  Then after a bit of that I realized I was turning it up, and then one day I realized I was dancing in my seat!  It was great - I felt good!  It will happen for you too - just give it some time.  If you consider what chemo does to the outside of us, the poor inside, right?  I know you just want to feel better, and it is hard to wait for it.

  • florbo
    florbo Member Posts: 32
    edited April 2013

    Sunday--When I got Neulasta 4 years ago, i had so much bone pain I couldn't eat because of the jaw pain and could barely move.  I was on Vicodin and Tylenol, too.  My MO had said that Claritin hasn't been proven to work.  However, this time around when I had Neulasta, I told him that I was going to take Claritin and he said OK.  It has made a HUGE difference.  I still get bone pain, but it is nowhere close to as delibilitating as before.  Sometimes, i don't even have to take Tylenol except on the first day.  I take the Claritin and Tyelnol the first day, then Claritin for the next 6 days.  Good luck!

  • volleymom77
    volleymom77 Member Posts: 34
    edited April 2013

    My legs hurt so bad. I feel like I walked thousand miles and can not take another step. The pain is even bad when I lay down is this normal. I have my herceptin only chemo Friday, I have not recovered at all from my last chemo. The severe pain and weakness is going on five days. Please need some positive feedback.

  • LeeA
    LeeA Member Posts: 1,092
    edited April 2013

    volleymom77, my leg pain seems to be the most intense when my hemoglobin is low.  Is your hemoglobin still low?  

    It seems like leg pain is one of the common side effects.

    Have you tried Aleve?  When it gets really uncomfortable I use Aleve and occasionally I rub a product called Theragesic(tm) on my legs.

    Adding - I'm very sorry you're experiencing this and hope it goes away soon!   

  • cgesq
    cgesq Member Posts: 183
    edited April 2013

    Volley, Sorry to hear you are in such pain. Lee is correct...I had terrible pain and leg cramps, and it turned out my hemoglobin was very low. Ask your MO if this could be the cause. If so, there are solutions.

    Sending healing karma your way!!

  • Sickofpink
    Sickofpink Member Posts: 38
    edited April 2013

    Thanks, Special K.

    Be well, volley!

    xo

  • lago
    lago Member Posts: 11,653
    edited April 2013

    Volley I had terrible stiffness and weakness more towards the last few treatments but it sounds like you are in a lot of pain. Call your onc and let her/him know. But some people do experience this. Your's sounds a intense though.

  • Kelloggs
    Kelloggs Member Posts: 303
    edited April 2013

    Volley - I had the leg pain bad too.  It got so bad that I had a hard time walking up the steps at night and it earned me the right to park in the handicapped lot at work.  My muscles would burn.  My MO suggested CoQ10 and it helped a little although I didn't start taking it until the end.  I still take it today.  The good news is that it does improve once you are done.  Hang in there!

  • specialk
    specialk Member Posts: 9,261
    edited April 2013

    kelloggs - great new pic!

  • Kelloggs
    Kelloggs Member Posts: 303
    edited April 2013

    SpecialK - thanks! Cool

  • moonflwr912
    moonflwr912 Member Posts: 5,938
    edited April 2013

    Volley, call your onc. Maybe you need your red count, potassium, and magnesium checked. All these can be painful. (Guess how I know LOL) hugs to you.

  • jittersmom
    jittersmom Member Posts: 79
    edited April 2013

    Volley...talk to your Mo I had the same thing towards the end of my chemo. I couldn't even stand up after I sat down....be firm and tell him you need a solution. I ended up getting a magnesium in fusion and took magnesium for a bit and that helped...good luck

  • kirklandgal
    kirklandgal Member Posts: 33
    edited April 2013

    Hello ladies - I have had one treatment of TCH so far and am scared now of neuropathy.  Everything went well with my first treatment except that I already have a significant neuropathy in my left foot.  It started as intermittent tingling that I wasn't even sure was real, progressed to persistent tingling, then a few days ago my foot became painful.  My right foot only has intermittent tingling.  It now hurts to walk on my left foot.  When I read about TCH it sounded like most people don't get neuropathy until the 3rd or 4th treatment and that if you get it earlier, it's more likely to be permanent. 

    Does anyone else have experience with neuropathy after the first treatment?  Does a dose reduction help?  Did it get worse with later treatments?  Was it permanent?  I find the neuropathy extremely scary.  I can handle the temporary affects of the treatment but I'm scared to death of permanent side effects!!  I will discuss it with my MO but would like to hear the experience of others!

    Stacie

  • specialk
    specialk Member Posts: 9,261
    edited April 2013

    kirkland - I had very mild neuropathy (feet, fingertips and tongue) that resolved between tx, until close to the end when it stayed on the bottom of my feet.  It eventually resolved by several months PFC.  I did take 30g of L-Glutamine, 1500mg of Acetyl L-Carnitine, and a B6 tab during chemo specifically for neuropathy, with the OK of my onc - I was scared of permanent damage as well as my mom had a severe case after two years of Methotrexate for a non-BC neuromuscular disease.  I think some have benefitted from a dose reduction, but you need to address this question with your onc asap.

  • bren58
    bren58 Member Posts: 688
    edited April 2013

    Kirkland, I am so sorry about your neuropathy after only one tx! Definitely talk to your MO about it. Also are you icing your hands and feet during taxotere? Many on this site have done it and have had pretty good success with it. It is a little inconvenient but if it works for you it is definetly worth it.

  • lago
    lago Member Posts: 11,653
    edited April 2013

    kirklandgal it is very important you talk to your onc aboat the nueropathy. If it's that severe s/he will reduce your dose. I did get the tingling at tx1 in my left hand. I started taking Acetyl-L-Carntine after that… never got it in my hand again but my left heel started to get numb at tx2 as well as burning in my feet if I walked longer distances. It would resolve but the heel then got worse after tx6. I still have a numb left heel that isn't too bad but can predict weather. Yeah I knew we were going to have rain today. Tongue Out It's been over 2 years PFC so I have to live with this. Not too bad though.

  • kirklandgal
    kirklandgal Member Posts: 33
    edited April 2013

    Bren58 - Thanks for the suggestion!  What is the best procedure for icing hands and feet?  Ziploc bags full of ice? 

    SpecialK - Thanks for sharing your experience.  I'm glad your symptoms resolved!  So far my symptoms have been gradually progressing but I still have 6 days until my next treatment.  Given your story, I will cross my fingers and hope for some improvement between now and next Wednesday!  I would definitely feel better if it were to at least improve a little bit before I have to get more medicine.

    I have been taking L-Glutamine (30g/day) and a BComplex vitamin (with 100mg of B6) but it doesn't seem to have helped.  I will look into the Acetyl L-Carnitine. 

    Any other supplements or suggestions that might help? 

  • moonflwr912
    moonflwr912 Member Posts: 5,938
    edited April 2013

    Kirkland, i had to get my tx reduced, not because of neuropathy, but other things.  I do however have some of that, but I had some to begin with as I am a diabetic.  I believe someone on here, and I am sure they will help when they check in, used insulated lunch bags for the ice.  Much love. and Sad to say, welcome.

  • bren58
    bren58 Member Posts: 688
    edited April 2013

    Kirkland, I used insulated lunch bags with one of those frozen plastic ice block things in the bottom and 2-3 bags of frozen peas that I nestled my hands in during the taxotere infusion. Towards the end of my tx's I also used quart  ziplock bags filled with 1 part rubbing alcohol and 3 parts water. The alcohol keeps the water from freezing so the bags stays flexible. For my feet I went to a sporting goods shop (like Dick's or Sports Authority) and bought the long strip ice packs that have the elastic and velcro bands on them and strapped them to my feet. By the time the 90+ minutes were over, my hands and feet were really cold, but for me the short term discomfort was worth it. I used the same peas and ice packs the whole time and carted everything to the infusion center in a cooler. For me it worked and I had no nail issues and only a small amount of neuropathy in my right thumb. I know others have used other methods of icing. Hopefully you can find a method that will work for you. Just don't try to eat the peas when treatment is over, they get pretty disgusting with all the freezing and thawing :)

  • monkeymom
    monkeymom Member Posts: 27
    edited April 2013

    Hello Ladies,

    Since this is a very long thread I read as much as I could before deciding to just ask my question. Sorry if this isn't the right place...

    I've had 1 round of TCH. I had very few side effects. Since I had surgery first, I have no way of knowing my response to chemo. SO, does lack of side effects= lack of effectiveness?

    I know that may seem silly to ask and I should be grateful for feeling well but after hearing/reading hundreds of stories, it seems strange to me that the first round of chemo impacted me so little. I know it's only the first treatment and I didn't have the Neulasta shot, which most people say causes the pain. For a few days after the chemo, I was tired, foggy, and constipated.That's really it. I have 2 small children and I've been able to go places and play outside with them all week. It's day 10 and I haven't shown signs of losing my hair yet. 

    At the one week mark, I went in for bloodwork. My counts were very low and the nurse said I'll probably be getting the Neulasta shot the next round. 

    Can I be reassured that it is working? Has anyone else experienced minimal symptoms?

    Thank you!

  • specialk
    specialk Member Posts: 9,261
    edited April 2013

    I had relatively minimal symptoms for the first TCH and did not lose my hair until day 24, 3 days after the second tx.  Side effects tend to be cumulative, but I hope each tx is just like this first one for you!  Just because you are doing well does not mean that the drugs are not working.

  • lago
    lago Member Posts: 11,653
    edited April 2013

    "SO, does lack of side effects= lack of effectiveness?" for chemo

    Absolutely not! A friend of mine had a 6.5cm tumor (actually so did I) but she got her chemo first. I think most of her tumor was gone after 6 tx. She had a little nausea after TX6 and her hair fell out. That's about it.

    That said you sound exactly like I did. The constipation will get a bit worse next time so be sure to use a stool softener (Metamucil worked well for me) and eat the proper foods to make you go next time. I started the Metamucil the night after chemo and stopped once things moved at a normal pace again.

    I started to lose my hair I think it was day 16. On day 15 I called the wig place and was about to cancel my fitting because my hair wasn't falling out yet. The said wait. Sure enough it started to fall out. Got it cut short at the wig place. I have a lot of thick hair so it did take a while before it all fell out. It does come out pretty quickly once it starts. What a mess. At 19 days I was still not wearing a wig but my hair was much thinner.