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Taxotere, Carboplatin and Herceptin

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Comments

  • IowaSue45
    IowaSue45 Member Posts: 422
    edited April 2011

    Hi just want to add what I take, I am 4 months post TCH will have H til Aug.

    I take natural melatonin plus a natural menopause tab. for night sweat and sleeplessness called estroven both help me.

     Hair- it is coming in. I went with out my wig starting last weekend and once I stopped wearing it it really started to grow so much so that my coworkers commented on its growth in a weeks time. I also use a shampoo called Biotin B complex shampoo.

    For neuropathy I went to a neurologist and she gave me Gabapentin and it has tamed it down a lot!!!

    imathew- it takes time to start feeling healthy again, I have days when I don't feel great but it seam to get a little better each month. Fir me I think the herceptin makes my bones hurt, especially when I get up from sitting. Makes me feel OLD so thanks for advising me on DIEP I am having it done May 17th and very excited..

    If your done with TC of TCH head on over to the hair hair hair board great group o there. And hair growth pic.

  • omaz
    omaz Member Posts: 4,218
    edited April 2011

    sue - Did your neurologist give you any idea of when the neuropathy might go away?

  • IowaSue45
    IowaSue45 Member Posts: 422
    edited April 2011

    No the meds she gave she said it would settle the nerves down and it has helped a lot. Here is my hair 4 months post TCH

  • AmyIsStrong
    AmyIsStrong Member Posts: 426
    edited April 2011

    Sue you are SO beautiful!

  • nora_az
    nora_az Member Posts: 391
    edited April 2011

    Wow great picture. I cant wait till my hair starts filling in like that.

  • IowaSue45
    IowaSue45 Member Posts: 422
    edited April 2011

    Amy Thank you... I think chemo has aged me sooooo

  • pasmithx2
    pasmithx2 Member Posts: 224
    edited April 2011

    Teckler2 - I've been thinking about you. Has Big D moved out? I hope you can get in a week or so of normal before heading to the chair again.



    I am now at day 6 after chemo #2. They kicked the taxotere back to 80% and that has made a difference. I am on the edge, but nowhere near where I was after the first round. I'm not perfectly happy, but it's manageable. I'm eating but I'm not excited about it. I am teetering on the edge of Big D too, but not quite. Once a day is acceptable. I'm trying the metamucil, but not gettting carried away with it. I'm gravitating towards bland foods--low fat, low sugar, not too spicy. It all probably helps but I think the 80% taxotere was key.

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

    pasmithx2 did you check with your doctor about Metamucil for the big D? I would think this is NOT the thing to do. I had the big C and Metamucil was what helped me even after all the fiber, probiotic, and Milk of Magnesia. I have read that too much Metamucil can give you the big D.

    As far as foods my chemo binder suggests the following for those battling the big D:

    Good:
    foods low in fiber
    small frequent meals
    each foods rich in potassium like bananas and potatoes
    clear liquids

    Bad:
    avoid caffeine, carbonated drinks, alcohol, milk
    no greasy, fried or spicy goods
    avoid milk & milk products

    Low fiber foods for big D:
    skinless chicken or turkey
    cottage cheese
    eggs
    noodles
    potatoes without skin
    white bread
    rice
    asparagus
    bananas
    canned fruit Peaches, pears, applesauce
    clear fruit juice
    vegetable juice
    jello
    saltine crackers
    sherbet or sorbet
    plain or vanilla yogurt

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

    I met a woman today who took TCH.  She is two months out from her last TX, and besides losing her hair, she didn't have a single symptom!!  Nadda.

    Lucky duck.

    Another woman I met is on TCH (recurrence in opposite breast) and her Onc told her (according to her) that "axilla dissection is no longer done" (when she asked why he wasn't ripping out her axilla like they did the last time).  He also told her studies show 4 treatments of TCH are just as effective as 6.  So she's only getting 4, then rads (all her SN were positive).

    Hmmmm....I wonder if he was just extrapolating the 4 vs 6 thing from the other study or if there is something new out there about TCH.

    Of course this is all according to her, but I thought it interesting.  Sounds like her Onc is on top of things....

  • omaz
    omaz Member Posts: 4,218
    edited April 2011
    TonLee - Thanks for that info - I wonder about the extrapolating too.  I haven't seen anything so far about 4 treatments of TCH.  Have you heard anything about the 6 vs 12 months of herceptin?  Apparently there is a study in France that is wrapping up ( I think) and they may have some preliminary data available.  I wonder how someone could have no symptoms with TCH.  That just amazes me.  Maybe they are just not bothered by things with their bodies. 
  • pasmithx2
    pasmithx2 Member Posts: 224
    edited April 2011

    Iago - yes, I did ask the onc about Metamucil. I'm not inclined to do ANYTHING without passing it by the doc and/or the chemo clinic pharmacist first.



    Metamucil has a two-way effect. It works for C and D equally well. The onc said it can slow down or lessen the intensity of Big D by adding some bulk to the bowel, so that it isn't straight water. You are correct that too much of anything, including Metamucil, isn't the answer. I've gone exceedingly light on it until I can see what the effects might be.



    I have the same info you have re: foods for Big D. Sadly, none of the standard approaches worked last time. I was also prescribed Lomotil and the onc finally told me to quit taking it since it wasn't having any effect. I have been VERY careful this round about what I'm eating to avoid a repeat. I have kept to small, frequent snacks rather than full meals and have focused on the lower fibre foods



    I won't claim the Metamucil is what is doing the job this time. I actually think cutting the taxotere back was the key factor. The onc also told me that, despite Big D being on the list of possible SEs, they rarely see the severity that I experienced.

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited April 2011

    Hi Ladies something has been really on my mind as of late and I talked to my onc about it today and he really has no input so I thought about putting it out here and seeing if you have any experience or stories to share. I see TonLee above post & it really struck a chord with me. 

    I am entering my 3rd TX in 2 weeks and I am seriously considering stopping after # 4 and continuing with my weekly Herceptin for a year.  When I had my BMX I was lucky enough to be was lymph node & met free. My onc recommended the 6 rounds of T&C as a precautionary measure because of the tumor grade 3 & my H2 status. 

    My reasons for wanting to reduce the number of TX, I am concerned about serious long term SE & nerve damage etc. My overall SE post chemo has been some fatigue, an overall yucky feeling that lasts about 2-3 days and I had mouth sores first go round. The majority of my SE comes from debilitating Nuelasta Bone Pain. I have tried Clariten, Zytec, Tylenol, Ativan and nothing is working. I am in the fetal position crying for 2 solid days and cannot do anything. I explained this to my onc and he tells me to take Alleve. All of my weekly blood work has come back above levels for everything, so the Nuelasta is doing it's job, but the bone pain is entirely too much. I have a high tolerance for pain but this is something else and there really is no relief. I also noticed I started getting a numb feeling in my index fingers and big toe that has not subsided, really minor now but it could turn into something really bad. But really outside of the bone pain, my SE are manageable and gone within 2-3 days. If any of you can share your insight or thoughts that would be great. I do not want to see this only from my POV. This is a really big decision and maybe I just need some sense talked into me?

  • omaz
    omaz Member Posts: 4,218
    edited April 2011
    nmoss - I ended up stopping at 5 tx because of neuropathy.  I agonized over it and talked with everyone.  In my case I am actually grateful that I did stop because my neuropathy got worse after chemo.  That is just my experience.  I will also PM you the abstract about the 4 vs 6 treatments that just came out.
  • TonLee
    TonLee Member Posts: 1,589
    edited April 2011

    Thanks Omaz for giving her the abstract...It keeps me from digging for it:)

    Nmoss...I tried to get my Onc to get me to stop after 5, but he said no.  And I wasn't comfortable enough with the extrapolation from the other study to do it.

    If the Neulasta pain is so bad...perhaps you should ask for Neupogen shots.  They are a lower dose, and you give them to yourself over a series of days...I think it is five...that way you are getting a low dose.

    After my first TX I didn't have Neulasta.  I was hospitalized (virus and infection) for 5 days.  I took nuepogen shots for 4 of those days.  I had absolutely NO bone pain.  None.  It was MUCH MUCH easier.

    I don't know why the Onc of the lady I talked too today stopped at 4.  Maybe she wasn't telling me the whole story.  Maybe she decided to stop and didn't want to tell me.  Who knows.

    Good luck!

  • omaz
    omaz Member Posts: 4,218
    edited April 2011
    nmoss and TonLee - I wanted to go 6 treatments.  It totally sucked but I wanted to feel that I had done everything.  nmoss - did they give any codeine type drugs for the pain from the neulasta? Maybe if you had something stronger, super stronger.
  • nmoss1000
    nmoss1000 Member Posts: 324
    edited April 2011

    Thanks Omaz for the study I will read it over. They have not suggested any type of codeine type drugs, just Alleve thus far. Stronger may be the trick but it is hard to get it out of my onc. 

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited April 2011

    You know, I actually gave him that study and his answer was it was an entirely different treatment so he could not compare. 

  • omaz
    omaz Member Posts: 4,218
    edited April 2011

    nmoss - Well I read it that one arm of the study was comparing taxol (paclitaxel) 4 vs 6tx, with taxol used alone.  We have taxotere which seems to be substituted with taxol on many occasions and visa versa.    So actually our taxotere+carboplatin should be at least as strong as taxol alone . I think one limitation to this study is that most patients had T1 tumors, I think we both have T2 tumors.  My favorite part was this though, 'For HER2-positive patients, relapse-free survival was 93.4% and 92.6%, respectively, and overall survival was 96.6% and 96.0%, respectively.'  so 4 treatments was as good as 6 for HER2+ patients as well.  That is good news for a lot of women with small tumors who are HER2+.

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited April 2011

    I think he was trying to skirt the real issue. He has a way of not answering questions and seems to be concerned with liability. He is very by the book understandably. I love that part too!

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

    nmoss1000 Our diagnosis is the same except I have a larger tumor. I'm glad I did 6 tx but I will admit it would have been nice to stop at 4. I can understand regarding the long term SE of chemo but I was willing to risk it because if the cancer returned, given the HER2+ status the cancer might not be long term if you know what I mean. Cancer just scared me more than some of the SE of chemo. HER2+ doesn't always need the nodes to spread but…

    You should NOT be in that much pain. They should be offering you a narcotic if you pain is that bad. I would have a talk with your onc. I would say if they can't give you something stronger for the pain you are considering stopping after tx4. I bet your onc will be writing you a script for something stronger than Aleve!

    It is an individual choice. Do not let anyone bully you if you feel you really want to stop.

  • IowaSue45
    IowaSue45 Member Posts: 422
    edited April 2011

    nmoss1000 are you positive the bone pain is from neulasta? I have had bone pain since the beginning of tx just thinking it was from everything TCH and neulasta but I have been done with TC and have H til Aug. and I still have bone pain and at times I think it is more than when I was on TCH, just a thought. For me I am pretty sure it is the herceptin.

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited April 2011

    Hi IowaSue thank you for your perspective. I am pretty sure it's the Nuelasta. I get the Herceptin in weekly doses and my SE is runny & bloody nose and eye puffiness/redness. The bone pain only occurs after chemo/Nuelasta.

    Hi Lago, I agree with you about the reoccurrence worry. I am trying to get something stronger. I didn't think it should be that bad and it was the same with round 1 & 2.
  • gasurvivor2011
    gasurvivor2011 Member Posts: 150
    edited April 2011

    As much as I am afraid of SE of chemo, I too am more afraid of the HER2 component of my cancer. I want to get all the meds I can to help. I was not happy w/ 6 cycles of TCH. Being a nurse (and Phd Student who was taught to crtique research in my doctor progam), I have scoured the research. The HER2 still being reserached, is the reason I am accepting of 6 cycles. I feel it's what I need. I went to 2 med oncs for opinions- both told me the same thing.

    I do respect it's a personal choice. For me, getting 2 opinions for surgery and for chemo has helped me to accept my treatment plans for surgery and now chemo.

    Best wishes. I am in the chair for round 4 TCH tomorrow. Dreading it- knowing the bad days are ahead. Here's positive thoughts to you all today and this week.

    Lisa

  • omaz
    omaz Member Posts: 4,218
    edited April 2011
    Good luck tomorrow Lisa - I have herceptin only today, number 12.  One thing that I have wondered about is that the TCH regimen comes from the BCIRG006 trial and is well accepted yet they have never published their results.  What do you think about that?
  • jackifp
    jackifp Member Posts: 63
    edited April 2011

    LisaGH: I agree on doing research and more research, and second opinions, and lots of questions. There's constantly new info out there, not all of it easy to access. Somewhere on this forum there was a link to the Finland study re: for 4 mos of H, as opposed to the year many of us are on. The look went to a phase II study that finished in '06, I believe, concluding the short course was just as valuable for killing cells and shortened the cardio effects of H. I went looking for phase III of the project, since that will go out 10 yrs rather than just 3 - found it, but it won't be done for awhile. There's so much out there, it can be overwhelming to try to make a decision. I know I listen to y'all, too, since you're in the trenches with me.



    Omaz: is the abstract you mention a link, or something you have a copy of? I'd like to look it over, also.

  • gasurvivor2011
    gasurvivor2011 Member Posts: 150
    edited April 2011

    That is an AC study not TC? (Unless I read it wrong?).

    I thought the TCH study was published- didn't realize it was not. I have truly read so much over the last few months it blurs. I did feel the large study comparing TCH and AC based protocol was helpful (for where I am in the spectrum). The MDs explained info on them specific to me. Getting the 2 MO opinions and reviewing the info, helped me. I did think the AC might be slightly more effective percentages wise (though deemed not statistically significant), the fear of cardiac troubles did worry me. Never easy for any of us- so personal a decision and many choices.

    Ready for round #4 TCH tomorrow morning! 

  • omaz
    omaz Member Posts: 4,218
    edited April 2011

    LisaGH - That is an AC study not TC? (Unless I read it wrong?). The abstract compared 4 vs 6 of taxol and 4 vs 6 of AC I think.  We would be closest to the taxol part since taxol is like taxotere I think.


    Diagnosis: 6/21/2010, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+

  • dragonfly1
    dragonfly1 Member Posts: 516
    edited April 2011
    I just had TCH #4 today and wanted to wish good luck to everyone getting TCH this week. If I recall correctly (and that's a stretch at this point) I think LisaGH, SpecialK, SudzinVermont,  and NathanL's wife are all getting TCH this week. Hoping we all have minimal side effects everyone! 
  • omaz
    omaz Member Posts: 4,218
    edited April 2011

    Best Wishes to all of you going through treatment this week!  You are all getting to be real pros!