Perjeta/Herceptin/Taxotere

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  • bhd1
    bhd1 Member Posts: 3,874
    edited July 2013

    Ronnie Kay yes my eyes tear. They say from being dry from taxotere

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  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited July 2013

    Thanks, Barb. My oldest daughter just gave birth to my 4th granchild (Boy) Thursday so this is a very mixed emotion week for me. It's so hard having so much to live for and realizing time could be cut so short at any moment.

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  • fujiimama
    fujiimama Member Posts: 800
    edited July 2013

    Lori- That sucks...I pray tdm1 is the one for you. Enjoy your grandson.

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  • bhd1
    bhd1 Member Posts: 3,874
    edited July 2013

    Congratulations on the new grand baby. I hope he is well and brings much joy

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  • Trish03
    Trish03 Member Posts: 292
    edited July 2013

    I finally made it through through the first week after chemo, and I must admit it was very interesting. The main annoying se has been the D, which is very unpredictible. Also, food already tastes funny. I think I really want something; then, when I eat it, it's terrible.

    I went to my onc yesterday for my first round of bloodwork at my since 1st treatment. My counts are all messed up, so they gave me a list of do's and don't's to keep from getting infection. Also, I was scheduled to have my port put in tomorrow. I went to the hospital yesterday for pre-op testing...bloodwork and EKG. After I got home, the surgeon's office called and changed the surgery to Friday since my counts are so low. They'll check my blood again when I get there. If it's still low, I wonder if I'll get a Neulasta show. Ten years ago, I got one after every chemo cycle...12 of them. I didn't have any problem with them, so it's fine with me.

    This is already quite a journey. I'm looking forward to when my life isn't centered around cancer and treatment. I hope the next treatment in 2 weeks is easier. I've read where they did get easier for many of you. 

    This afternoon I finished reading all of the posts in this thread. I can't tell you how much admiration I have for you ladies. It amazes me how many of you are holding down full-time jobs and raising small children while undergoing treatment. I really inspires me to feel that I can do it. 

    I'm elated to see the good scan results that many of you have had. I don't know when I'll start getting scans. Since I'm just beginning, there's a lot I don't know about my journey ahead.

    Trish

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  • lilylady
    lilylady Member Posts: 1,079
    edited July 2013

    I scan tomorrow. I will probably have to wait longer than usual for results because of the hoilday. Not having a good feeling-wondering if the Tax is kicking my butt because the cancer is gaining. I will have had 2 tx with the Tax being at 70%-also I skipped a tx altogether so this scan will show all the reduced ones. I am hating it right now but I guess I stillhope it is working.

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  • Trish03
    Trish03 Member Posts: 292
    edited July 2013

    Lilylady, sending prayers that you will have good scans tomorrow. It would be wonderful if the 70% is working for you.

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  • bhd1
    bhd1 Member Posts: 3,874
    edited July 2013

    Lilylady good luck. We care

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  • fujiimama
    fujiimama Member Posts: 800
    edited July 2013

    Praying for you lilylady.

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  • lilylady
    lilylady Member Posts: 1,079
    edited July 2013

    I had a messageon my answering machine from the onc office that said "We have to talk-please call the office." it was 8pm so no one to talk to obviously. I will call tomorrow but I think the news must not be good.

     Makes me wonder if all the problems I have been having lately has been the cancer and not the Taxotere. The bad days come and go and always before if it was chemo related the bad days were pretty much consecutive. Mostly what I have been calling stomach problems but it could be my liver I guess. I get these cramps that just double me over for long stretches of time then they just go away.

     Tomorrow will tell the tale I guess. I am sched for a tx on Tues. No way are they going to get approval that fast from my ins co for new drugs. I would like to go to TDM1 but they fought me for 6 months on PHT and I think the new stuff is even more expensive. I haven't done Gemzar or Navelbine so they might make me fail on one of those first. I would love to do something easy for the rest of the summer and the TDM1 seems to be treating everybody pretty good.

     Thans for your good thoughts but gut says I will be moving on. I got a year out of this and that is beyond belief.

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  • bhd1
    bhd1 Member Posts: 3,874
    edited July 2013

    oh lilylady, i hope you are wrong.

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  • CarlaK
    CarlaK Member Posts: 158
    edited July 2013

    Lilylady, I'd think the same thing if I got a phone message like that. Makes for a long night. Hope whatever you go on to next is knocks this crap into regression but is gentle on you!

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  • JillThut
    JillThut Member Posts: 1,470
    edited July 2013

    Lilylady,



    So...how did it turn out? What was the news?



    Hate to see you suffering with stomach pain ...or anything for that matter. I know you're not a complainer.



    I guess you did get a fairly long run on perjeta/tax/herceptin....albeit not particularly pleasant on the tax.



    I thought the only reason you had problems with perjeta approval was because it was not a first line treatment for you. If you and your onc agree that Tdm 1 is the way to go next for you it shouldn't be an issue insurance wise. In my experience I have never had an insurance company deny a chemo drug in favor of another based on cost. And my onc usually gets quick approvals too..within a week of knowing there's a need for a switch..probably within a couple days. I hope you get an even longer run on whatever you move to next ...and a much more pleasant one.

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  • lilylady
    lilylady Member Posts: 1,079
    edited July 2013

    Not much to tell yet becase i have not actually seen my daggone report. More about that later. Biggest deal is the radiologist called the onc and said immediate follow up needed because the abdomen/pelvic area is all lit up. There is so much going on she couldn;t really see what was going on. getting a contrast CT of the area tomorrow and see the onc on Tues for tx or whatever. Possible causes are stomach abcess, necrosis, diverticulitis or cancer. she said heavy metabolic action willlite up like cancer. The cramping pain has been pretty unbearable.

     I have self dxed (with the help of the internet of course)that I have acute diverticulitis. Depending on how far it is the treatment could range from oral antibiotics to IV anti., liquid diet, or even surgery. The last 2 scans have had paragraphs about the sigmoid colon and pelvic area-and said they needed follow up but my onc said they over react and we didn;t need to do anything. Well now that I can't stand up straight or eat without feeling total misery I am pissed. I think  after years of seeing someone who never looks or acts sick they take me for granted and aren't listening. I am more mad at myself for not being more aggressive about problems. I just always think things are just going to go away-and most times they do-so I haven't been insistent enough about some issues.

     So I scan tomorrow and they want to scope also but want the other results yet. The only info I could pry out of the PA was my lung stuff is growing and hotter, new nodes lit up but the liver is still clean. So I do think I will be saying goodbye to PHT. It is a year this coming week since i started. When I was first dxed and had my chemo group I can remember counting down that initial 6 tx and thinking it would never get over with. Now I have done Tax for an entire year minus 2 tx. Those early stage girls miss out on all the fun don;t they?

     I hope everybodys weekend went well. I will post when I get more info. Cancer sucks!!

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  • bhd1
    bhd1 Member Posts: 3,874
    edited July 2013

    yes lilylady cancer does suck.we will be waiting for news

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  • kingcour
    kingcour Member Posts: 93
    edited July 2013

    Praying for you Lilylady! I hope for the best outcome. You are a warrior!

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  • JillThut
    JillThut Member Posts: 1,470
    edited July 2013

    Sure does suck.  And I would almost agree with your self made diagnosis of diverticulitis but for some of the other things you said in your post.  Sure seems like you should be seen Monday and not Tuesday...especially because of the pain..but maybe you downplayed that?  I can really relate to one who never looks or acts sick but the few times I have complained they do take notice and respond to it fortunatley.  Hope it goes well.  Will check back to see.

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  • Trish03
    Trish03 Member Posts: 292
    edited July 2013

    Lilylady, I'm so sorry to hear your news. Although I'm new here, over the last couple of weeks I've read this entire thread, and I'm familiar with your journey. I know that you started this thread, and I've seen how positive and supportive you've been to other ladies. I hope and pray that your doctors will have some good news for you and a treatment that's even better than this one has been. Please keep us informed about your how you're doing. 

    Trish

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  • CarlaK
    CarlaK Member Posts: 158
    edited July 2013

    Lilylady-I have my fingers crossed that your new problem is diverticulitis or similar, ie fixable and not cancer related, so your pain goes away (although it doesn't seem fair to have 2 major health problems simultaneously!)

    A question for you all: has anyone had cough and shortness of breath with PHT? This started for me after round 4 and I know it isn't my heart because I just had a follow up echo that was fine. I'm hoping it's just tax (I blame everything on tax)  but since my mets are in my lung this is one s/e that freaks me out. I agree that you really have to be very insistent about your concerns because they tend to be brushed off if you "look good" so I'm going to complain about it again at my upcoming appointment.

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  • kingcour
    kingcour Member Posts: 93
    edited July 2013

    Drastic CA27/29 increase for me. I just had the scan, so I'm hoping it's coming from the breast tumor and its increased growth and activity. Good thing that thing will be out Tuesday! It's a hard blow to take bad news with 4 kids, but I have to trust that God will handle it through my medical team!

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  • fujiimama
    fujiimama Member Posts: 800
    edited July 2013

    Praying for you lilylady and Kingcour. My heart goes out to both of you. Cancer sucks.

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  • Trish03
    Trish03 Member Posts: 292
    edited July 2013

    I'm wondering if you would mind answering a few questions for a newby:

    Have you reached NED? How long did it take to get there? How long has it lasted?

    Did you find that treatments 2, 3, etc. were easier?

    Does the diarrhea continue after you drop the taxotere?

    Thanks, Trish

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  • lilylady
    lilylady Member Posts: 1,079
    edited July 2013

    Well I am moving on to Kadcyla. After a year on PHT I am more than ready. I had a CT of the abdomen and it was inconclusive. They are not ruling out cancer because it actually has an SUV of 6.5 and the retroperitoneal nodes are lit up also. So I am going to do some steroids, antibiotics, change chemos and be off Taxotere. he is hoping 1 or a combo of those things will fix the stomach.

     This has been a great group of ladies to be with and I know some that already moved on are on the TDM1 thread. Good luck to all of you I will be checking back to see what is going on. I start my new drug next Tuesday. I so appreciate all the good thoughts sent my way.

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  • bhd1
    bhd1 Member Posts: 3,874
    edited July 2013

    i am sorry you are leaving. wish you lots of luck on tdm1. it is much easier than pht. i hope you do well on the new tx. i will be checking on yu. thanks for starting this thread.

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  • JillThut
    JillThut Member Posts: 1,470
    edited July 2013

    Yes good luck with the TDM 1. I'm sure I'll be joining you there soon enough. Hoping it is easier for you side effects wise...and also that you are soon pain free!

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  • aic
    aic Member Posts: 417
    edited July 2013

    Praying for you kingcour! Lilylady...hoping this new one does the trick!

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  • fujiimama
    fujiimama Member Posts: 800
    edited July 2013

    I'll miss you lilylady.

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  • kingcour
    kingcour Member Posts: 93
    edited July 2013

    Surgery was today. The mothership is gone! I feel so much better already!



    Lilylady- best of luck with the new tx. I will be checking in on you!

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  • bhd1
    bhd1 Member Posts: 3,874
    edited July 2013

    at last. good for you kingcour.

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  • fujiimama
    fujiimama Member Posts: 800
    edited July 2013

    Kingcour I'm glad the mother ship is gone.:)

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