Perjeta/Herceptin/Taxotere

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  • kingcour
    kingcour Member Posts: 93
    edited April 2013

    I went off just the taxotere for a 3 week cycle but still did p and h. I felt great with no D. I ran around Disney chasing 4 kids like a wild woman!

  • jocanuck1951
    jocanuck1951 Member Posts: 1,003
    edited April 2013

    Kingcour I'm so happy to hear that! I'm hoping for a break around November and do Disney world with hubby and granddaughter. We had that all booked for last dec 2nd instead I was diagnosed in sept with BC and mets after mast in nov...still hoping!

  • dormouse72
    dormouse72 Member Posts: 84
    edited April 2013

    That's a relief.  I have had D with the Xeloda but believe it or not, I've actually GAINED weight while on it.  I have put Immodium everywhere (by my bed, in the bathroom, in the kitchen, in my car, in my desk drawer, in my purse).  I'll be happy with Stable Boy again.  I'm glad to hear that you guys are able to work, travel, etc.  It makes me feel like this will be doable.  Hopefully it will be effective AND doable.  

    Anyone have any issues with dizziness? I read somewhere that dizziness is an issue and you shouldn't drive after taking it.  Not a big deal for most of my life - I walk to work, my kids get themselves to school, I can order most things (like groceries or clothes) on-line, and my oldest (hopefully) will be getting her license soon.  But I have to either drive or take public transportation (commuter train and Subway) to get to my onc.  My friend is going to come with me to the first one just to see how it goes but I cant expect her to take time off from work every three weeks to take me.  Just trying to plan as much as I can.

    Thanks all. I'm feeling much better about this change.

  • aic
    aic Member Posts: 417
    edited April 2013

    So sorry to hear of those of you moving on. I wish you the best of luck. Hope tdm1 does the trick for you. Shaysmom, so glad you are feeling good!

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

    I drive muself to every tx and have never had a problem with dizziness but like we all know mo tow of us seem to have the same experience.

     I am emjoying my littleTax break. I had my yx Tues and usually Sat is my worst day followed by 3 moredays of not much fun. Without the Tax it seems so easy. Of course I already know the P/H doesn't work for me with out the Tax so emjoying it while I can!!

  • Bondgirl
    Bondgirl Member Posts: 140
    edited April 2013

    Hi ladies. Been off the boards for a few days. Thank you for all the support! Still bummed about epic fail of p/h/t and scared to death that TDM1 will not work. Next scans scheduled for early June.

    Wanted to offer some support for any of you thinking about a vacation (ie the Disney conversation). Got bad results on Friday. Flew back from Houston to Atlanta same day. Had my family here for Easter. Left Monday morning with husband and 4 year old daughter for Disney! So 2 weeks out from last chemo with bad news, spring break and with a 4 year old we nervously made the drive. Lol. We did 3 parks in 4 days and it was awesome. Great memories! I will say by last night I was dragging ass but so was my perfectly healthy husband. I have some back pain from spine mets and heaviness in my lungs from tumor in pleura but I felt worse before we went. Some daily Tylenol and half a pain pill at night and I was good to go. Anyway the point of the post is that if you are thinking about it and able take those vacations between treatments. So worth it!



    I hope you all have much better luck than I did. I'm sure I will continue to check in to see how you wonderful ladies are doing.

  • Spoonchek
    Spoonchek Member Posts: 158
    edited April 2013

    Its been since mid January that I've only been on p/h and my scan is scheduled for Tuesday. I've got a big pit in my stomach and am trying not to cry but I'm so sad thinking about going back to the tax



    I knew it wasn't going to last, but problem is that its been so great having a break from tax. I haven't felt this good in years "relatively".



    My heart has hope for more months off the tax but my brain says its not likely to happen. Last tumor markers had risen a bit are have probably rose again. The scans will give the answer.



    I have so much anxiety I don't know what to do with myself. :-(

  • jocanuck1951
    jocanuck1951 Member Posts: 1,003
    edited April 2013

    Bondgirl thanks for the input on Disney! If I get a couple of weeks chemo break I'm there! Coming from Canada I don't qualify for any travel health ins....I'll have to be somewhat healthy....still hoping, onco said no hospitals in US as I'll lose my house...if you can do it under your circumstances so can I Lol! Sure hope that TDM1 is your magic!



    Spoonchek, I'll be thinking of you, had my scan yesterday, I see onco on Wed...feel like

    Shit! Countdown, 4 days to go for results, last scan in jan showed my liver is full of mets...I get brain freezes...fear! Ack!

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

    Good luck spoon and Jo w the scans. Saying prayers

  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited April 2013

    I got my scan results Monday after 3 doses of the p/h/t. Awesome news! I have had a pleural effusion in my right lung since 2007. My last scan before the new treatment showed uptake in that area, which never had before. Well, the pleural effusion is GONE! Measurable uptake in "hotspots" has decreased by half or more and the liver met also showed decreased uptake, although not near as much; the size is similar but now less well marginated. All in all, I am so happy!

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

    Lori I am so happy to hear your news. Yay. I guess u will continue thp or woolly u just do p& h? Batb

  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited April 2013

    As far as I know, I will stay on thp for now. I'm pretty happy with the results. My regular doc wasn't in last week so I will see him on my next treatment in 3 weeks and will find out more then.

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

    Per my onc, typically for an ER+ patient...three rounds of perjeta/ herceptin/ tax is the norm and if its working they usually drop the tax in favor of a hormonal.

  • jocanuck1951
    jocanuck1951 Member Posts: 1,003
    edited April 2013

    Good news! Onco said significant reduction is liver lesions! He wants approx. 10 - 12 more weekly infusions and hercepton every 3rd week for life but I'll take it! I'm so happy, I was making plans for my demise....so Disney for sure in the winter if I'm stable! What a relief....it's been surreal...never had to deal with anything in my life like this....funny, I'm still a bit disbelieving but I'll get copies of the report from my personal GP and read the report with her....I have to see it in black in white.....phew!

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

    jo that is great news!    lets keep this going.  ned for everyone!

  • fujiimama
    fujiimama Member Posts: 800
    edited April 2013

    Yay,Jo and Lori! Congratulations on good news. I love hearing good news. I've got a classic case of PTS (pre treatment syndrome). Even though I've been on p/h only since October, I still seem to get b&# at my dh and kids. I also get cramps and the big D. I joke with my non BC friends that I went from a 30 day cycle down to a 21day cycle. Isn't my dh lucky...

  • pearlady
    pearlady Member Posts: 882
    edited April 2013

    AIC in a way I'm sorry that I'm moving on since I don't want to use up all of my options as long as the perjeta is still keeping me stable.  But my onc suggested the TDM1 saying that we could always go back to the Perjeta if we had to and that the Perjeta would probably still help to keep me stable if we needed it in the future.  Even with all of the side effects, I was able to continue working full time and to travel as needed, so I am thankful for that.  I just couldn't get past the big D.  I would have a good day and then the next four would be dreadful.  I was totally sleep deprived as most of my big D issues were at night.  Can't afford to lose any more weight.  I have lost almost 20 lbs. on the perjeta, but I was slim to begin with and am not a tall person, so 20 lbs. for me is a lot.  I have certainly found that the TDM1 is not without side effects, but am so glad that Shaysmom prepared me for it so I wasn't caught unexpected.  Still, for me, much more manageable than the Perjeta/Herceptin/Afinitor, even with still taking the Afinitor.  I can deal with the headache for two days and with the loss of appetite and tiredness for a few days.  Now a week later I feel almost normal, with still a big of the big D hanging on, but definitely getting better.  The great thing is that there are options for all of us.  I am hoping that the Perjeta works well for everyone for a long time, but it's nice to know that TDM1 is there as an options.  Prayers and blessings to all.

  • aic
    aic Member Posts: 417
    edited April 2013

    Lori and Jo, so happy for you!!!! Pearlady1, best of luck to you. Am always glad when we have options! You will be in my prayers :)

  • kingcour
    kingcour Member Posts: 93
    edited April 2013

    So glad to hear all of the good news! I am getting my last taxotere right now (16 straight). I finally felt really tired this cycle and haven't been to the gym in a month. I asked my onc if that was normal. He said, "You've been getting your a$$ kicked! Sure it's normal! You will feel much better 6 weeks from now!" I am due another echo. I have had some mild ankle swelling which worries me, but he said his swell as badly as mine, and he saw no other signs of an issue. The echo will tell the tale!



    Pearlady- praying for you and your switch! Hope it is perfect for you!

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

    So pear lady r u taking tdm1 and Affinitore?

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

    Kingcour I too am missing the gym. I used to walk 4 miles a day, now I go twice around the block. Can only walk 9 holes of golf.Do half Zumba class if any. My physical activities are so limited.

  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited April 2013

    I don't know, Jill. I am on my 4th round now. I guess it is really up to the oncologist! I have to admit, it is working so well I don't want to quit yet! I haven't been on any treatment that has yielded such drastic results in the past 6 years.

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

    Oops...I meant six....not three. She just mentioned that to me when I had my third round on Monday. Going to scan in a couple of weeks and if it's working she said we'll do it for three more rounds...six total...and then replace the tax with a hormonal.

  • Lorijo6600
    Lorijo6600 Member Posts: 51
    edited April 2013

    So we are on about the same schedule. Good luck on your scans, Jill! Mine made me very happy!

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

    I heard taxotere 6 times too.

  • pearlady
    pearlady Member Posts: 882
    edited April 2013

    Hi Bhd1.  Yes I am taking TDM1 and Afinitor along with Aromisin and Tamoxifin.  My dose for the afinitor has been reduced, however to 7.5 instead of the 10.  That really does make a big difference with the Big D, which is really the only side effect I've had with the afinitor. 

  • pearlady
    pearlady Member Posts: 882
    edited April 2013

    Kingcour thank you so much for your prayers.  You will definitely feel better six weeks from now.  I'm looking forward to also getting back to the gym.  I haven't gone much lately since I've had trouble getting up in the morning after all of the big D late at night.  Things will be different for me also in a few weeks.  Already I can feel the positive shift.  Prayers to you also.  Praying that your echo is perfect.  I also had a problem with anke swelling a few months back, but the echo was good. It went away and hasn't come back since. 

  • Spoonchek
    Spoonchek Member Posts: 158
    edited April 2013

    My scan results are in. Have to go back on the tax after it just being p/h the past 3 months. 2 small liver spots have shown up so need the chemo back. Bones and lungs are still okay. I'm sad and worried about the liver but I know lots on this board have coped with it well over time. Am trying to be calm.

  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited April 2013

    Happy to hear people are having good news from scans!  I was going to be scanned in March but onc postponed because all my blood tests...liver enzymes & tumor markers are down to normal so she said the news is good and will wait a bit longer to see more improvement in liver tumors.  I'm on navelbine (had tax first go around in 09), herceptin and perjeta...and the perjeta diarrhea seems to be balanced with navelbine constipation, thank goodness. 

    Just wanted to check to see how you're all doing.  Bondgirl...I'm glad you had great fun with your family!  A good bit of advice for all of us :)  We have our 40th anniversary in September & am hoping to take the family to Hawaii in January!   Love to All!

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

    spoonchek, the PH didn't keep me stable without the Tax either. I only did 2 PH without the chemo and the scan showed quite a bit of progression. I went back on the Tax for 3 more and stayed stable. I would like to have lost what grew if you know what I mean but stable is still good. I started on a 75% dose of the Tax because I am having some problems with my nails and neuropathy in my feet. This last tx we skipped the Tax completely-it makes life so easy without that stuff. I am going to go for full dose on my next tx and them skip tx altogether in themonth of May. I am taking the whole month off work and I just want to feel good. Whatever the risk it is worth it to me.

     I have been on this since late June of last year. It is the longest I have ever lasted on any drug but it is defintely taking a toll on my body. I still feel good but I am not as physically strong as I was and my endurance is crap. I have lost over 20lbs and between the D and no appetite it is hard to feel energized. We have had a a bad winter and I haven;t hardly walked at all during it but I am getting back to a good routine. Poor doggie gained 8lbs over the winter-I told the vet it wasn't her fault!

     I hope you all have a good weekend. I am glad some of you that have moved on to other drugs are still popping in to report how you are doing

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