Perjeta/Herceptin/Taxotere

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  • Trish03
    Trish03 Member Posts: 292
    edited September 2013

    Trish_is_me, I'm sorry that your onc gave you such a disturbing prognosis. I don't really understand why he would do that because everyone responds so differently to treatments. Since your tumor markers are dropping, it sounds as though the chemo is working. Have you had scans yet? My onc ordered scans after my 3rd cycle of P/H/T. That's the only way to know for sure if the tumors are regressing. You might want to get another opinion.

    Hugs, Trish

  • CarlaK
    CarlaK Member Posts: 158
    edited September 2013

    Kingcour: crap, I am so sorry to hear about the brain mets. You sound so calm about it! Hang in there and I hope Kadcyla is the answer for a long run.

  • CarlaK
    CarlaK Member Posts: 158
    edited September 2013

    Trish-is-me: sorry the taxotere has hit you so hard. I got thrush for a few days every cycle-bleah. I should have tried the ice trick. I think your onc is giving you the old school numbers on stage 4 prognosis, but my onc feels that being triple positive gives lots of treatment options and told me 5 years was "doable" and 10 years possible but a stretch. Everybody's different but all it takes is one of these new treatments to hold the cancer back for an extended time. If you hit that jackpot then you'll prove your onc wrong...

  • renemarie
    renemarie Member Posts: 2
    edited September 2013

    Hi ladies,



    I have metastatic breast cancer and have been cancer free for the last 5 years. A recent test revealed I have mets to my liver again. I'm about to start the perjeta/herceptin/taxotere combo. I'm assuming the taxotere is guaranteed to make all my hair fall out, right?



    I have to wait a few weeks before I start the treatment. I'm thinking about cutting my hair really short in the meantime to help with the transition. But I don't want to do it if it's possible it won't fall out.



    Any suggestions?

  • Trish03
    Trish03 Member Posts: 292
    edited September 2013

    Renemarie,

    I'm very sorry to hear that your cancer has come back. It must be really difficult after being NED for 5 years. I also have liver mets, and P/H/T has shown good results for me so far, shrinking my tumors by 30-40% after 3 treatments. Did you have liver mets in the past; if so, I'm wondering what treatment got you to NED for 5 years? I hope these drugs give you another 5 years and more.

    Yes, the Taxotere will cause you to lose your hair. I hope you do well with P/H/T. Keep us posted.

    Hugs, Trish

  • BethCon1
    BethCon1 Member Posts: 132
    edited September 2013

    This may seem like a dumb question, but can't they just cut the cancer out of the liver? I have liver mets too, and doing chemo again makes me want to throw up. I have nightmares about it. The liver regenerates doesn't it?

  • Trish03
    Trish03 Member Posts: 292
    edited September 2013

    Beth,

    I have heard of surgery to remove liver mets when the mets are very small and there aren't any mets anywhere else, but I don't know how often it's done. It makes sense because the liver does regenerate. I'm sure some other ladies will have more info on this. I'd be curious about knowing, too.

    Trish

  • Trish_is_me
    Trish_is_me Member Posts: 8
    edited September 2013

    I asked my Onc about cutting out the liver mets too or radiation... He said neither  would work for me. He said no Doctor (surgeon) would touch the liver if I already have so much cancer floating thru my body and he said radiation wouldn't work because I have too many mets in the liver (8) 2 lesions that are "deeper" and the other 6 that they said was not very deep and actually on the outer layers of the liver. I feel like my Onc has seriously given up on me and I just was diagnosed stage 4 after having nearly 6 years of NED with stage 3c. sooo Frustrating.

  • Lilah123
    Lilah123 Member Posts: 9
    edited September 2013

    Hello Ladies,

    Again, I am so thankful for all of you sharing your stories.  I have a question and I'm not sure if anyone will know an answer but I thought I'd throw it out there.  My mom has stage IV breast cancer with mets to the lungs, liver and bones.  She was on Taxotere and Herceptin but after 3 months of stopping that regimen, there was progression.  She is now enrolled in a study and is taking Perjeta, Herceptin and Capecitabine.  Her first round of follow-ups tests recently showed the tumors are stable.  A co-worker of hers has been strongly suggesting she take vitamin B17.  Does anyone know about taking this vitamin, while on these drugs?  Has anyone else heard about the benefits of vitamin B17 in fighting cancer?  Is it generally not a good idea to start taking certain vitamins while on chemo drugs?  Any info would be greatly appreciated.  I'm going to do some google searching as well; I just wanted to see if any of you ladies had any first hand experience.  Thank you:)

  • fujiimama
    fujiimama Member Posts: 800
    edited September 2013

    Trish is me- Hang in there. Your MO is a rudy(My two year old's favorite insult). My mo won't give me numbers. As he puts it the drugs we're on haven't had enough time in the general public to know how long. So don't give up. I have kids 2,6,9 and I am homeschooling the 6yr old. Yes the taxotere sucks and works at the same time. I started pht September 13 last year. I've been on ph only since October. That's a lot longer than six months. You are you. Your not a statistic, you're a person whose body has already shown a very positive response to the treatment plan. Sorry for the rant. I just really dislike negative people who are supposed to be in our court.



    Kingcour-I'm going to miss you. Keep us posted.

  • fujiimama
    fujiimama Member Posts: 800
    edited September 2013

    Trish is me- Hang in there. Your MO is a rudy(My two year old's favorite insult). My mo won't give me numbers. As he puts it the drugs we're on haven't had enough time in the general public to know how long. So don't give up. I have kids 2,6,9 and I am homeschooling the 6yr old. Yes the taxotere sucks and works at the same time. I started pht September 13 last year. I've been on ph only since October. That's a lot longer than six months. You are you. Your not a statistic, you're a person whose body has already shown a very positive response to the treatment plan. Sorry for the rant. I just really dislike negative people who are supposed to be in our court.



    Kingcour-I'm going to miss you. Keep us posted.

  • Trish_is_me
    Trish_is_me Member Posts: 8
    edited September 2013

    Fujiimama- Hello...so where were you mets at? didyou have a lot of them? and what happened after the P/H/T stopped and you went on just the H/P ??? with my first chemo fight in 2007 I did carboplatin/herceptin/taxol and ended up getting nearly 6 years of remission out of it..of course I was stage 3 then NOT STAGE FOUR.....and now I am STAGE 4 with mets to liver (8) and numerous lung lesions and SEVERE BONE mets everywhere.

  • fujiimama
    fujiimama Member Posts: 800
    edited September 2013

    i had one very large mass on my spine. It had consumed a large portion of my T11 I had several other suspicious spot activity. One in my lungs and one in my liver. Yes I am on the less severe end in terms of number of tumors. I only had to do two thp. I have been NED since. My first round in 2011 I did six taxoter/carboplatin/herceptin. I had 27 rounds of rads to my chest. And continued on herceptin only until April 17, 2012. They thought I was done and I had my port removed May 6,2012 on June 2, 2012 I had an incident that sent me to the er. The chest ct showed my tumor. What scens couldn't show was that it had started climbing like a vine up my spine. After my initial rounds of pht I've been on ph only and have remained with no evidence of disease. I get ph every 21 days. I also get xgeva for my bones and depolupron to keep me in menopause. I was also on femera, but it started being counter productive. Ok so I hope this gives you enough information. I also now have bone & ct scans each month. I am hoping you find great success with this combo and can see regression. I'm praying you get years of stability and need. The worst side effects of ph only is the "purge" of perjeta. Sorry I wrote another book. I just wanfed to give you hope. Anything is possible.

  • Trish03
    Trish03 Member Posts: 292
    edited September 2013

    fujiimama, so you've been on just Perjeta and Herceptin since October and your liver mets are still NED?

    I'm wondering...does food taste terrible for the first week or so after treatment? Also, do your blood counts go really low after treamtent? Those are two problems I have with P/H/T.

    When you mentioned the "purge," are you referring to diarrhea? I really hope that gets better if/when I'm able to drop Taxotere.

    Trish

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

    My blood counts went down but I never missed a tx. Food tasted terrible second week. I think it is the perjeta that causes the diarreah.

  • Trish03
    Trish03 Member Posts: 292
    edited September 2013

    Barb, thank you for the information. It helps to know what se's to expect. I have treatment #5 Monday, and onc has said I may be able to stop Taxotere after 6 treatments. I know Tax is a strong chemo, so, hopefully, I'll see a difference. I also hope that the extreme fatigue and back ache I have for 2-3 days toward the end of the 1st week will be better. 

    I hope you are doing well. Are you still on P/H?

    Hugs, Trish

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

    I am still on pht. We lowered the taxotere last time. I am not ned

  • fujiimama
    fujiimama Member Posts: 800
    edited September 2013

    Trish is me The purge is from perjeta. At this point I am still NED. I have my quarterly scans at the end of the month, I'll let you know. Weird tastes hit me only for a few days. I also seem to get a case of insomnia the weekend before the next treatment. Most se's on ph are very mild for me.



    Bhd1 I am amazed that you've pushed through with the taxotere. You are one strong woman.

  • fujiimama
    fujiimama Member Posts: 800
    edited September 2013

    Trish is me The purge is from perjeta. At this point I am still NED. I have my quarterly scans at the end of the month, I'll let you know. Weird tastes hit me only for a few days. I also seem to get a case of insomnia the weekend before the next treatment. Most se's on ph are very mild for me.



    Bhd1 I am amazed that you've pushed through with the taxotere. You are one strong woman.

  • aic
    aic Member Posts: 417
    edited September 2013

    Kingcour, :( so sorry to hear this...felt like I had been hit by a truck when I read it. Please keep us posted. Hope you kick the brain mets asses!

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

    Oh my...I've missed so much in the last month.  I've been mostly out of town (with the change from navelbine every week to 2 weeks on, 1 week off & P/H every 3rd week I've been able to have a bit more of a life!). 

    As far as surgery on the liver, we asked my onc about that when first diagnosed and she said mets are a bit like the soap bubbles little kids play with.  She said when the bubble lands on cement and pops, you can see some of the soap spread.  She said that's what the mets do...they never really go away, they just lie dormant (hence NED).  I don't know if other mo share her thought, but she also said it's possible that mets may be lying dormant elsewhere and it's not a good idea to put your body through the stress of surgery, which could cause a flare up there.  I can't express as she did, but she basically said surgery's not an option. 

    Fujii...I really am so happy you're reaching the 1 year mark...an inspiration!   I welcome our new sisters...with the disclaimer that I wish you didn't have to be here...but you came to a place of love & care!  I really don't know what I'd have done without all my bc.org family!

    My scans are tomorrow....with scans at 5 months showing 80% reduction, you know I'm praying, hoping & doing chants for that last 20% to be disappeared!!!!   Since going to 1 week off, I'm hoping it still did the great job it was doing!!!!  

    As far as neulasta and neupigen go....I didn't get chemo when my counts were low so it basically wasn't a choice as to whether I'd have the shot or not.  I've always had neulasta..until last week, when I need neupigen for a quick fix.  Neulasta is more of a time release shot.  With both, claritin was the day before, day of and day after.  My first Neulasta was horrid and I cried with pain in my shins...so awful.  That was 4 years ago with 1st diagnosis.  Since then, there's just a minor squeezing feeling, mostly in my ribs but sometimes in my hips. 

    Gotta get to bed but wanted to check in...after being gone for so long...have missed you all but you're always on my mine!!! XOXO

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

    Ronnie Kay good luck on the scans today. Let us know. We care. Barb

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2013

    Ronnie, we really wish that 20% is gone. Best of luck today!!

    -- The Mods

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

    I'm sooooooo happy to hear from you Ronniekay!!!!!!! Xoxoxox. Jo

  • fujiimama
    fujiimama Member Posts: 800
    edited September 2013

    RonnieKay I'm so glad to see you back on the boards. We will still have to get together one of these days. I am praying for that NED for you. Glad you're feeling better.

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

    Thanks Gals...and Moderators :)    All went well today...except for a glitch and the ct machine not working for a few minutes.  Now it's time to wait for the call.  Since my onc is out with a broken wrist and my nurse is out ill, another one of the onc's nurses will call tomorrow.  Nervous, nervous...but trying to put that aside and consider that it was working well on June scans so....

    Got some questions...can anyone tell if perjeta is keeping your hair from coming back?   I know most of you had taxotere, which is not hair's bff :)   But now since taxotere is over for some, can you tell whether there's an impact with perjeta?  Mine is getting so thin...and I had a full mane!!!   I also have a bit of wonky curl so now that there isn't much weight, it's a bit unruly.  Wondering if I should just cut it short...ala cute Jo!  

    Also...my fingernails have gone soft on me :)   Just over the last few weeks they started tearing and so I cut them as short as I can.  It's funny how many things you do with the help of your nails.

    Does it sound like I'm being vain???   If we had coffee together (tea probably since decaf is making my tummy rumble), you'd know vain isn't part of my repetoire...but still :)

    Anyhoo...sleep tight all!   I had a nap when I came home so here I am in my "perch" at the table.  I haven't really stayed up past 10 for quick some time.

  • Trish03
    Trish03 Member Posts: 292
    edited September 2013

    RonnieKay, I hope you get a good report from your scans and that that remaining 20% is gone. My nails are getting a little funky, too. They have pink horizontal stripes across them, and I'm wondering what will happen with them. I have one more treatment with Taxotere and hope they'll hang on until I'm off that if that's what's causing the change.

    I'm also curious to know if my hair will start growing back when I'm just on P/H. That would be a nice surprise.

    Trish

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

    I got hair back when I did just P/H. Did it for two cycles but had progression and added the tax back in. Didn't have a lot of hair but what little I had started falling out again. Then we stopped the whole pht program due to progression. The hair didn't know whether it was coming or going. On TDM1 now and the shedding has stopped. Starting to look like an old gray porcupine!

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

    Well kids, I'm just on herceptin 😬 since April 30th and my nails are shot, peeling, splitting etc. and my hair...well..you know those wispy little curls elves have...hrmppp

    Mine are silver and NOT growing! And I have every side effect that ever existed with herceptin....so don't worry about being vain Ronniekay, we're allowed..



    I want herceptin to work forever! Perjeta has been approved by Ontario health but not funded so unless you have private insurance (we don't) I can't get it unless I pay for it. So GO herceptin! Jo

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

    Jo good luck. I hope the herceptin alone is good for you!!! Keep us posted .

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