Taxotere is a nightmare

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  • Omaz
    Omaz Member Posts: 5,497
    edited February 2012
    Kelloggs - was it Tykerb (lapatinib)?
  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    kelloggs - awesome!

  • Eileenohio
    Eileenohio Member Posts: 460
    edited February 2012
    Kelly, Could it possibly be Tykerb?  I tried to google some info,this is the only thing I could find. 
  • lago
    lago Member Posts: 17,186
    edited February 2012

    I thought the drug might be Neratinib

  • OneToughCookie
    OneToughCookie Member Posts: 37
    edited February 2012

    Eileen -

    I am glad you decided to give chemo a try. During my infusions I frequently sit next to ladies who are in their 70's. Since we talk the entire time, I know that a few of them live alone.

    You will NOT get all the side effects that you've read about. Everyone tolerates chemo differently. I am very lucky and have had minimal issues after 4 treatments. Take it one day at a time. And like others have advised, write everything down.

    Best of luck to you. And think about attending support group meetings. The ladies there are as kind and supportive as the wonderful, brave women on this website.

  • Kelloggs
    Kelloggs Member Posts: 965
    edited February 2012

    I believe it is Tykerb!

  • rachelvk
    rachelvk Member Posts: 1,411
    edited February 2012

    Eileen - Just wanted to jump in with more encouragement. I'm on TAC, and for the most part, I think I've avoided the really big SEs (I have my 4th tx this Thursday, out of 6). The third was the toughest - I had to really take all the anti-nausea meds, but they worked, and while I was used to being tired on days 3 and 4, this time I was still having trouble making it through work on days 7 and 8. My taste buds have been hanging in with only brief episodes where things taste horrible (I credit swishing with olive oil twice a day), and have had a few brief periods where my left palm tingled, but only after my 2nd treatment. And if you're getting Neulasta, you should definitely take Claritin to relieve the aches.

    As for the hair, here's a link to my hair pictures:

    http://www1.snapfish.com/snapfish/thumbnailshare/AlbumID=4893775016/a=4949599_4949599/otsc=SHR/otsi=SALBlink/COBRAND_NAME=snapfish/ 

    (you'll need to register for snapfish; I haven't found another way to link to photos). 

    I never got it shaved - my hairdresser insisted on just giving me a pixie/buzz - and even though most of it has fallen out, there are still quite a number of strands holding on. I picked up a second wig today (the last pic) and absolutely love it.

  • Eileenohio
    Eileenohio Member Posts: 460
    edited February 2012

    OMG  I am having such a bad day with the stress over the TCH side effects. I am hyperventilating & literally shaking. I am having second thoughts,I might not do it. I am going to call the doctor in the morning. I am going to ask her if I can do hormone therapy and radiation but no chemo and join a clinical trial for herceptin alone.  I want quality of life vs quanity. At 73 and living alone is it worth it?    I pray that I make the right decision and that my doctor will let me decide what I want.

  • lago
    lago Member Posts: 17,186
    edited February 2012

    Eileenohio we were all scared at the beginning. Remember you can always quit once you start. Most people come to these boards to complain… very few post to say "I'm only having minor SE."

    If I could have quit chemo after the 4th TX it would have been pretty easy for me. The last 2 tx were the harder but not impossible. I never took any narcotics for pain. I know you're older than me but I didn't need anyone at home to do stuff for me when I was on chemo.  Chemo isn't forever. I don't know how much chemo will improve your stats of not getting mets but I do know how aggressive HER2+ is. Herceptin is more effective with chemo.

    You also don't know about the SE from the hormone therapy. Most women do fine but a few just can't stay on it due to the SE. You only have 1  shot at chemo. I believe it must be done 4-8 weeks after surgery.

    I would ask your onc for something to calm you down. So many of us going through this have needed help in this way.

    My quality of life is good. I'm just over 1 year PFC. Yes I do have some residual effects but not bad at all.

  • rachelvk
    rachelvk Member Posts: 1,411
    edited February 2012

    Eileen - I wish you the best on making your decision. It's such a hard one for all of us, but you have a really valid point. Not all of us have the same level of reactions. Maybe you might consider starting and seeing what happens. I've had my share of down days, but all things considered, I feel fortunate in not having been completely knocked down. Many MOs seem to be really good about responding and adjusting to our SEs. It's good that you have options for herceptin and hormone therapy. I hope you can find an alternative that works for you and your MO. I was pretty limited because I'm triple negative, so it was chemo or bust.

  • Eileenohio
    Eileenohio Member Posts: 460
    edited February 2012

    Lago, I have done a lot of research on Herceptin w/o chemo trials. It is said that Herceptin w/o chemo is the HER2+  treatment of the future once the trials are done.  Right now I fear the chemo side effects more than I fear the cancer coming back.  I am praying that God gives me courage.The terror I feel is overwhelming.   Thanks for your support.,

  • lago
    lago Member Posts: 17,186
    edited February 2012

    Eileen remember that chemo is not like it was years ago nor is it like what you see on TV. I remember what my grandmother went through in 1980 for lymphoma at age 69. It's not like that now. They have much better medications to get you through all the SEs.

    Is there a support group at your treatment center? There should be a social worker there that might be able to pair you up with someone who's gone through this. I met a few women through the Looks Good Feel Better program too. You just need someone to give you a big  hug. ♥

    Do see what your onc says though.

  • Eileenohio
    Eileenohio Member Posts: 460
    edited February 2012

    Lago, Some of the ladies have posted that they have minimal side effects,but they sure don't sound minimal to me. When I see that some ladies have problems from the side effects as much as 2 yrs later I think OMG.    Thanks for your kind words of support. 

  • lago
    lago Member Posts: 17,186
    edited February 2012

    But not everyone does. I mean it's a year for me and I have a little neuropathy  in my left heel that I feel when its cold or damp but it doesn't hurt. Just a little numb. And the fingernail thing is not only one of the more rare SE I got it really badly. With nail polish they look fine. This is not affecting my quality of life at all.

    I have more SE from hormone therapy. I'm a little stiff but not too bad. That I notice. Finished 1 year, 4 more years of Anastrozole to go. Chemo was only 3 months.

  • Eileenohio
    Eileenohio Member Posts: 460
    edited February 2012

    My MO told me and my sisters that my cancer was CURABLE with TCH,that is why they are pushing me to have the chemo.  Has anyone else been told that their ER/PR HER2 positive was curable?

    Thanks

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited February 2012

    Eileen, You have to make the best decision for you, but I hope you will at least try chemo.  I had four rounds of TC with minimal side effects. I was very frightened before my first infusion, but I was pleasantly surprised at how much easier things went than I thought they would.  I asked my MO for ativan because my anxiety prevented me from getting a good night's sleep.  He agreed and taking ativan short term made a huge difference for me.  There are many things MO's can do to counteract the SE's.  Just let your doctor know any time of the day or night when you need something.  That is why there is someone on call all the time.

  • lago
    lago Member Posts: 17,186
    edited February 2012

    Eileenohio invasive breast cancer has no "known" cure no matter what our biology. Given that you are stage1 (smaller tumor, no nodes, grade 2)  you have a higher probability of being "cured" with treatment but no guarantee. My onc gave me statistics on how chemo and hormone therapy would increase my odds of NED (no evidence of disease)  and alive over the next 10 years. (Herceptin hasn't been out long enough for 10 year studies on early breast cancer). I would ask your onc to show and explain this.

    I would share my stats but they are meaningless to you because they are specific to my pathology and age… and you should have a better prognosis given our smaller tumor and lower grade.

  • Eileenohio
    Eileenohio Member Posts: 460
    edited February 2012

    Lago  Thank you. You have just validated my research. I do believe that that TCL will give me a few more years,but not a cure. I am going to call her in the morning. She mislead my sisters,when I try to explain this to my sisters they get angry saying "do you really think the doctor would lie to you?"   I don't think she lied but I do want to know how she determined that I would be cured..

  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited February 2012

    My oncologist used the words "curative treatment" in one sentence. If one is NED for say over 5 years or more, isn't it the same as "cured"?

  • Eileenohio
    Eileenohio Member Posts: 460
    edited February 2012

    Curative treatment means the ABILITY to cure which translate to a possible cure.. Is NED the same as remission ?

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    NED is like remission would be for a cancer that can't be treated with surgery, like leukemia.

  • lago
    lago Member Posts: 17,186
    edited February 2012
    Eileenohio… you may be cured with treatment. They just don't know who is cured until they live more than 25 years. That woman  in my building that's a 35 year survivor… she is cured but they didn't know that for sure even 25 years ago. What your onc is telling you is treatment might get you to cure a lot better than no treatment. NED is what the doctors use. It can mean  remission too. Until they can say I'm cured (in 24 years) they will continue to use the term NED.
  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited February 2012

    Hi Special K - nice to "hear" your voice. Hope you are doing well. I am doing great! Friday was my 1 year PFC. My hair is still baby soft and scarce, but at last, it is growing. I am still doing Herceptin until October. How are you?

    Hello to Lago too, though, we are FB buddies. Still "hi".

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    Hi!!!  So glad to "see" you and hear that you are hanging in!  I am doing ok - having exchange surgery on the 24th - finally!  I finished Herceptin last month and just realized that I am having less joint pain in the last few days - hopefully as a result of the drug clearing my system - so, yay!

  • lago
    lago Member Posts: 17,186
    edited February 2012

    specialK I too noticed less stiffness in thighs after Herceptin ended.

  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited February 2012

    Oh, yeah! The joint pain. I have that too. I did not have it while I was taking Tykerb, but when I got switched over to Herceptin the pain came almost right way. I do feel better after I do yoga and had tried 800mg of SAMe that seemed to have worked as well so far.

  • Eileenohio
    Eileenohio Member Posts: 460
    edited February 2012

    I am trying to keep a record of everything that can help with side effects. What is 800MG  SAMe? I want to add it to my list.  Many Thanks

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited February 2012

    Eileen, I sent you a PM.

  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited February 2012

    Eileen - SAMe is --S-adenosylmethionine -- is an over-the-counter dietary supplement that seem to help my joint pain. But! Before you run off to get some, please talk to your doctor whether it is allowed for you to take it. You would not want it to counteract the effectiveness of chemo. Please talk to your doctor first about any supplement you intend to take while you are in treatment.

  • Eileenohio
    Eileenohio Member Posts: 460
    edited February 2012

    Thank you.  That's some name. If I have joint pain I will ask the doctor.

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