Aphinity Trial Pertuzumab

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  • PollyP
    PollyP Member Posts: 19
    edited August 2013

    I thought I was getting it( and so did a nurse) but now I am thinking that some of my SE's were a hangover from taxol. Had serious nail issues after chemo. Nails lifting off- really gross! BP down. Now that I am nearing the end of the treatment ( October, and I am counting the days!) nails are almost all better and I am feeling more energetic. And no big D-only a small D when I have milk. Who knows?

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  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited August 2013

    Hi - I had basically no D and minimal side effects - my last treatment with Herceptin and the P drug was July 9 - so I am all done and it seems like it almost never happened. My biggest issue now if achy thighs - like REALLY achey - anyone had that?

    Hope you are doing OK - and hope none of us ever have a reason to learn if we had it or not - that this is it.

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  • PollyP
    PollyP Member Posts: 19
    edited August 2013

    Yup, I ache too...although from what I have read on this blog, it might be the tamoxifen/arimidex. Might be age! Have to keep moving! Glad to hear from someone finished and feeling relatively good! Is all your energy back?

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  • cypher
    cypher Member Posts: 508
    edited August 2013

    it seems like it's really hard to tell b/c the SEs aren't that dramatic, and they are similar to herceptin.  My reasoning for thinking I am probably the placebo group is that my SEs were pretty minimal through the whole thing, including chemo.  If I was in fact getting an extra bunch of saline each time I got an infusion, that would help with my SEs across the board.  On the other hand, I do know other people who had the same regimen who didn't have major SEs, so I could be wrong.  But again, better that none of us ever has a need to find out!

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  • PollyP
    PollyP Member Posts: 19
    edited August 2013

    Just waiting for another infusion...and I agree, let's hope we never need to find out what group we were in! Can't wait until I am finished with Herceptin/ Perjeta ( i hope it's both)in October.

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  • Nurse76
    Nurse76 Member Posts: 15
    edited August 2013

    I also am done in mid October with everything. Getting my port out Tuesday because it is fractured in two places, so last four treatments are just through regular IV. Having the last of my reconstructive surgeries at the end of September - has anyone else has nipples skin grafted from thigh tissue? That is how my PS does it. The only side effect I notice from the biologics are very red finger tips, soles of feet and sometimes cheeks and ears. That is why my oncologist thinks I am getting the Perjeta for sure. No D, but frequent after treatment. I also pray that none of us ever has to find out if we were on the study drug.

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  • PollyP
    PollyP Member Posts: 19
    edited August 2013

    Congrats on the port! I did not have one, but I know that when it comes out it's a happy day. Only a few more treatments for us Nurse! I too am looking forward to nipple reconstruction and have checked out that forum- and it was quite helpful. Not sure where my PS is going to get the skin- maybe from my side, under my arm area. Doing that in October also and contemplating a visit to Vinnie the tattoo artist. Have to speak with the PS- wonder if tattoo is necessary.

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  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited August 2013

    Hi Polly P - Love your pictureof Hydrangeas - they are so beautiful - I have several : ) and they grow without doing anything to them so they are perfect for me.  So now you can say you will be done with treatment next month!  Yea! Wish that someone would tell me where this achiness is coming from - back, legs - ugh!!!! I hate it - I feel like I'm a hundred.  Any clues out there?  Hope you have a wonderful weekend.

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  • PollyP
    PollyP Member Posts: 19
    edited September 2013

    Thanks cvmarilyn - I hope you are having a wonderful weekend. I am so happy to even think about the end of treatment. Of course, I still have to finish with the PS and get a nipple but that's the easy part, right? I thought of you this morning because my joints ache when I get up in the morning. I feel like the Tin Man in the Wizard of Oz, and the oil can is movement!! The more I move, the better I am. I am trying to lose weight to rid me of the lymphadema.

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  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited September 2013

    Having a good weekend - getting a lot done - now to go work on my daughter's scrubs!  She got her first RN job!!!! Which is a huge deal in CA where there are NO jobs for new nurses.  I feel like the Tin Man too - need oil!  What is PS treatment?

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  • BethCon1
    BethCon1 Member Posts: 132
    edited September 2013

    Hello, I'm not sure if this is the right place, but I figured I would start here. I was just wondering what the side effects were for pertuzumab? I've been having some bad luck lately and after fighting stage 3 for a year I've been rediagnosed as stage 4 with mets to the spine and liver. I'm on tamaoxifen and still on herceptin when it spread. I saw an onoclogist at the University of Penn yesterday and my treatments will consist of radiation first to help with the pain in my back, then a combo of Herceptin/Pertuzumab/Taxotere. The way she made it sound, this will be my treatment indefinitely. She was also talking about a pill called palbociclib. I did not do well on AC or Taxol, so I'm nervous about how I will feel on the pertuzumab and taxotere...

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  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited September 2013

    Dear Beth - I am so sorry that you are going through all of this.  This site is for people that have, or are doing the Aphinity Trial - so it's not a place where you'll find information. We do not know if we have gotten Pertuzamab so - unfortunately - can't tell you what side effects there are. I'd try doing a search for it on this web site - and hopefully you will find a group.   I know there is a Stage IV Group.

    Take good care-

    Marilyn

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  • cypher
    cypher Member Posts: 508
    edited September 2013

    Hi Beth, I am so, so sorry to read this.  I hope you get amazing results from the addition of pertuzamab. 

    On a completely unrelated note -- I have had this thing where my nose is like bright red, almost like rudolph!  I haven't had it in quite awhile ... is this a pertuzamab thing?  I only ask b/c someone said something about the soles of your hands and feet being red being a sign.  Anyone have something like that?

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  • PollyP
    PollyP Member Posts: 19
    edited September 2013

    Cypher, after reading your post, I checked my nose at my second to last treatment ( hurray!!) this past week. No Rudolph! Don't know what I am getting, but I only have one more treatment to go!!!

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  • madeleine99
    madeleine99 Member Posts: 14
    edited September 2013

    Glad to hear you have only one treatment to go. I just had my sixth and last this week. The relief is indescribable. I can hardly wait to get my taste back. Now it is onward to radiation.

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  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited October 2013

    You should be so proud of yourselves! You did it!  It's like climbing a mountain. It's so hard to explain to anyone who hasn't done it themselves - and even then each of is different.  It's been 11 months since my last chemo - chemo and it seems like another life - except my hair's still short.  Got to admit I've trimmed  it to get it even - etc... but it's hair!!! Keep us posted on how you are doing through radiation!  It'll all be behind you before you know it <3

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  • madeleine99
    madeleine99 Member Posts: 14
    edited October 2013


    Thank you, Marilyn. I still haven't started radiation, 34 treatments, but it is heartening to know it will be over before I know it! Certainly not as long a chemo. Still waiting to get my taste back, it has been 4 weeks, but a nurse told me it would be fully restored by 9 weeks. I can hardly wait. I hope I keep off the 25 lbs I lost during chemo.

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  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited October 2013


    Hi Madeline - How are you doing? How has radiation been for you? I hope you are doing OK - it's weird isn't it? Anyway please let me know how you are - hang in there - it'll be like it was all some weird dram before you know it and you'll be able to taste Turkey : )

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  • Carolynvj
    Carolynvj Member Posts: 5
    edited October 2013


    Hi everyone,


    I have only just found this site. I too am on the aphinity trial. I was the last one accepted at the hospital I am having my treatment at in Melbourne.


    I had 4 rounds of AC every 3 weeks & now having 4 rounds of Docetaxel with the addition of Herceptin & placebo/pertuzumab.


    So far I have been extremely lucky with SE's as really all I have had is baldness & little extra tired. The SE's of Docetaxel regimen have been aching legs & tiredness. I have 2 more Docetaxel then continue with Herceptin till September 2014. Will have 5 weeks radiation in January.


    I am glad I found this site as I like reading your posts etc.


    Take care all & live life xx

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  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited October 2013


    Hi Carolyn ~ Welcome Aboard! Not much activity here - which is sad because it would be wonderful to compare notes. I hope you are still doing well - it sounds like you're doing great and have a wonderful attitude to match. I think that SE meds are so much better than they were - lucky for us. I finished "official" chemo a year ago on the 31st. The year has flown by and I am feeling really good. Hair is back! I'll have to post a new picture. It's the worst part - don't you think? Even when you are feeling yourself you look in the mirror and there you are bald! So weird.


    Hang in there - you can do this!


    <3 Marilyn

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  • Nurse76
    Nurse76 Member Posts: 15
    edited November 2013


    Hi everyone


    Hope all of you are doing well. I had my LAST infusion today - so happy to be done with treatments. I know I will still have follow up stuff for a long time, but am glad to be watched closely. My hair is returning and it is so soft, not a bad color, a bit curly (loose,not tight curls), and so easy to style! For me the worst part of chemo is the neuropathy... Hope I get some feeling back. The other thing is having no feeling in my new alien boobs! They look goddess and are pretty well matched for having two types of reconstruction, but they don't feel like mine - even though they are bought and paid for - way better than prosthetic boobs though! My fingertips and soles of my feet are still red and after treatment my cheeks and ears turn red easily for about two weeks. I will see if this starts to fade now that I don't have to have anymore treatments!


    Stay well and keep positive thoughts

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  • madeleine99
    madeleine99 Member Posts: 14
    edited December 2013

    Hi, Marilyn, thanks for asking. I have finished radiation now and just need to continue with Herceptin and the trial drug (Pertuzumab) through June 2014. I feel good. I have lost over 30 lbs, which makes me happy. But my taste is still not back yet. I hope it returns! How are you?

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  • madeleine99
    madeleine99 Member Posts: 14
    edited December 2013

    Welcome! I was pleased to see you were from Australia. I spent 8 years of my childhood there. Good luck to you. I have finished chemo and radiation and now just need to continue with Herceptin and the trial drug or placebo until June. The hard part is over. I certainly hope.

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  • Carolynvj
    Carolynvj Member Posts: 5
    edited January 2014

    Hi Madeleine,

    Finally finished all my chemo & feeling really good. Start my 5 weeks of radiation on Monday 6th January. Just want to get it over & done with. Still having Herceptin & trial combination that doesn't finish till sept 2014. 

    Hope everyone has had a Merry Christmas & here is wishing your all a very healthy & happy New Year & way beyond..

    Carolyn

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  • cvmarilyn
    cvmarilyn Member Posts: 179
    edited January 2014

    Hi Everyone -  I hope that when you read this you are doing alright.  I am now around a year passed radiation.  My hair is back - thankfully - to the same color it was. I have naturally red hair and have never dyed it. Through my life it's been a curse and a gift.  As I have gotten older I recognize - especially after all this - how much my hair color is a part of me - so needless to say - I am so happy to see it again.

    I want you to know that this journey will change you but not in a bad way. It truly is a chance to reassess life and how you want to live yours.  I see that I made some mistakes taking care of myself and have made changes to what I eat and drink. how I store food, and how I choose to react.  I am not saying I don't get mad - but now I find I get MAD and then accept.  It makes for an easier path.  Food for thought.

    Happy, Healthy New Year!

    Marilyn

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  • MaryR12
    MaryR12 Member Posts: 13
    edited January 2014

    Hello Tria lLadies, 

    I would like to know if anyone is being refused treatment because you are past one year of your start date?

    I was told that I will not be allowed to have my last treatment (18 of 18 in one year) because I will be 1 week  past my one year anniversary of starting the trial.  As I have read the trial protocol you can push treatments forward or back from your next scheduled treatment by three days. This was also confirmed by a nurse coordinating my treatment, so we moved up my last three treatments by 2 days each, which would put my last treatment the day before one year is reached. The problem is, my Onc is denying me my last treatment sighting it is against protocol, and that moving my last three treatments may harm me. Unfortunately the nurse who was helping me was reprimanded of doing what I see as being clearly written. I apologized that I caused her any problems, and do not feel that either is right. I have had issues with this Onc before, and sought to change docs but because of the trial it was to difficult to do. I even asked for just the Herceptin, because she can give this outside of the trial, and told her I know of several patients who have been on Herceptin for years. I was still denied.

    Has anyone been denied treatment because of this "one year" time frame, and has anyone received treatment after their "one year" time frame was up?

    Blessings to all us survivors.

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  • madeleine99
    madeleine99 Member Posts: 14
    edited February 2014

    I shall have to ask the same question myself, since my last treatment will also be beyond a year from the original start date. 

    Other than that, I find I am feeling terrific, have kept off the 35 lbs I lost, but still do not have my taste fully restored.

    Best wishes to all of you.

    Madeleine

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  • kae_md99
    kae_md99 Member Posts: 621
    edited March 2017

    i know this thread is old but how are you ladies who took both H and P for a year adjuvantly doing as far as the SE's and results are concerned?

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