HERCEPTIN and/or PERJETA Threads

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  • spicypetunia
    spicypetunia Member Posts: 83
    edited June 2015

    CarlaK - maybe nausea? had thought I was having bad heartburn/indigestion/etc. - but turns out I'm just lousy at identifying nausea. I've lost a lot of weight since dx but have held stable at least 6 months. still have the taste changes off and on, definitely don't eat as much as I used to, and sadly definitely definitely don't enjoy food as much -- but when I start getting very fussy about eating (ie skipping meals or have to really force myself to eat) more often than not, a zofran takes care of it.

    protein drinks: I've tried many. while Vega sport chocolate is the tastiest I've found (much cheaper on amazon, btw), it is not for weight-gain --- lo-cal, almost no fat, no added sugar. it's also dairy, gluten & soy free - but really, it's about the taste and texture. bonus: it has l-glutamine & some digestive enzymes. I just add water but know others who add rice milk, choc syrup, etc.

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  • CarlaK
    CarlaK Member Posts: 158
    edited July 2015

    Thanks for the ideas Spicy. I really have little to no nausea or heartburn. My onc is sending me for a GI consult to check into that kind of stuff, so we'll see what they think. I have some zofran left over from taking taxotere so maybe I'll try it just to see. I looked at various protein drinks at Costco last night and couldn't decide-you have to buy so many and what if they're gross? I think I'll buy a few different ones at the grocery store to see what tastes good

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  • jcfree
    jcfree Member Posts: 105
    edited July 2015

    pwilmarth, Thank you for your professional insight of H & P protocol. It sure helps to hear that there is flexibility if needed as to skipping a treatment or extending the time between them. My Onc definately keeps up on my progress and other stresses in my life. His CPN called me at home after I called to cancel my apt. and wanted to know about my Mom and what happened and she said my Onc wanted to know so she was going to relay what I told her to him.

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  • spicypetunia
    spicypetunia Member Posts: 83
    edited July 2015

    vega sport protein shake (and others they make) come in single serving packets. they're pricey for ongoing use, but great for taste-testing. fwiw, I found that each category (sport, one, greens, etc.) can have a very different taste/texture.

    for travel, I portion servings of powder into a zip-top bag & pack a reusable water bottle. a piece of parchment or wax paper makes a great 'funnel' if the bottle's opening isn't very wide.

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  • spicypetunia
    spicypetunia Member Posts: 83
    edited July 2015

    so awesome to hear about all of the great reports! makes my day! :)


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  • pwilmarth
    pwilmarth Member Posts: 235
    edited July 2015

    hydranne, all is well Still dealing with the neuropathy, but I can handle it.

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  • Freygea
    Freygea Member Posts: 300
    edited July 2015

    Still hanging in there but have a rash on my hands that is driving me crazy. Taking benadryl,Zyrtec and lots of water. I used latex gloves over the weekend and I think that is the culprit.

    Received the Taxotere,Herceptin and Perjeta last week . Had some bone pain but that is resolved. Now if i could only get rid of the rash. I see him on Monday but plan on calling him if the rash worsens. The rash does seem to be getting better so I am hopeful.

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  • sueopp
    sueopp Member Posts: 1,541
    edited July 2015

    Hang tough, Frey - hope it settles down and you can enjoy the holiday. SUE

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  • Teakie88
    Teakie88 Member Posts: 226
    edited July 2015

    Freygea:

    I had a rash develop on me when I first started that triple combo of HTP, but after the first couple of treatments, I didn't have it anymore. I'm hoping that is the case with you as well. Have a great weekend everyone and BE SAFE! Ann

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  • Freygea
    Freygea Member Posts: 300
    edited July 2015

    Thank you Teakie and Sue!. My MO saw my hands on Monday and thinks it is the taxotere even thouhg I am still hoping it is from the latex gloves. He placed me on steroids for 48 hours prior to chemo and 48 hours after chemo (along with the standard iv dexamethazone on chemo day. I have 2 more session with the Taxtorere and then I guess will see what happens next. The Herceptin and Perjeta so far seem to like me..lol

    Noting my right breast is much looser and the lump much smaller. I think things are working. *smiles* Had Bone scan today and go for my neulasta shot tomorrow. May know some results and if not I see the Doc again on the 28th so he can let me know about bone mets..wipty doooo. : )

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  • Teakie88
    Teakie88 Member Posts: 226
    edited July 2015

    Freygea:

    That is so great to hear that treatments must be working well for you! They did for me too. Let us know how your PET scan went, and we'll be hoping for great results for you! Ann

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited July 2015

    I think I've been mia for a while.  Had our annual reunion on the 4th in the hotter part of the state w/family pics outside in 100 degrees.  Thankfully have ac inside.  Also celebrated my 61 years on the 2nd.  Much less fanfare than last year...hallelujah...when I was still on chemo & it felt like a major milestone.  

    Freygea...saw your pic & you look adorable.  Hopefully taxotere will soon be a distant memory & your hands silky smooth!

    SUE...just so happy :-)

    jc...love & thoughts to you on losing your Mom...so sorry.

    Pwilmarth...the neuropathy in my feet is getting bad!  Where is yours?????  I see onc on the 15th & wonder what he'll do, since dropping p is already in the plan.  I'm nervous about the thought of it going away, but I know it's what's causing the neuropathy & don't know about continuing, especially if he's advocating for only herceptin.  My TM's are staying low, ca2729 from less than 5, up to 7 & cea .7.  He said he'd watch super closely (don't know how it'd be any closer since they do TM's every tx).  My toes feel foreign to me right now...ugh.  I'm also getting zits and hair (down there!).  I feel like I'm going thru puberty & I thought letrozole was supposed to be taking care of that.  Another ugh.  Alas...I feel good & am not complaining (haha!!!).  

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  • Freygea
    Freygea Member Posts: 300
    edited July 2015

    Happy belated B day Ronnie! I hope you had a blast at your family reunion.

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  • sueopp
    sueopp Member Posts: 1,541
    edited July 2015

    Happiest of b'days, Ronnie my girl. Very sorry about the neuropathy - seems to be very common among us all. Sometimes I feel as though I have two wooden pegs below my knees, fortunately not too often so far. Well, we gotta do what we gotta do, and I know you agree. I'd love to know what your doc thinks. Fondly, SUE

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  • pwilmarth
    pwilmarth Member Posts: 235
    edited July 2015

    Ronnie Kay

    Happy birthday to you. I will be 61 on the 26th.

    Neuropathy is still my friend. I went through a period where I couldn't tell where my toes were, but I've been off Taxotere for almost 2 months and it's gotten better. I used to feel it on the bottom of my entire foot, now just the balls of my feet. I used to only be able to tolerate walking for about 10 minutes now up to 30 'to 40 minutes. Gabapentin helps. I use Vicodin when I need it.

    I know it takes a while for the neuropathy to clear. But it does get better every week.

    Hang in there. I know the neuropathy can be scary.

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited July 2015

    Freygea - Glad things seem to be working well! I hope the steroids help the problem with your hands.

    Happy birthday Ronnie Kay! It sounds like you enjoyed your reunion despite the heat.

    So sorry to hear everyone dealing with Neuropathy. So far (knock on wood) I have been lucky and avoided that issue. Do you think it is from the H&P or from an earlier chemo?

    My only complaint is that my period has returned. No more chemopause. My doctor said that at my age (42) it may not return after chemo and after seven months I thought he was right. Boo. I was really enjoying it too. No hot flashes or anything. Now they want me to make a gyno appointment to make sure everything is normal. If it isn't one thing it's another. I should have seen this coming as I seemed to gain 4 pounds overnight last week and spent half an hour balling my eyes out in my friend's office, but it was still a surprise. And here's the kicker...exactly 28 days before our vacation to the wilderness of Michigan's Upper Peninsula. Oh goodie!

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited July 2015

    Thanks for the happy bday wishes! My cousin fb'd me that I'm on the cover of our county newspaper, pushing GD in her stroller at the 4th kiddie parade. Yikes...all I could think of is my batwings blowing in the 100 degree wind :-). Good for a few laughs!

    Oh Shutterbug...just not fair. I was perimenopausal at 55 (my onc was mortified...but I'd had an ablation at 45 so no periods), so chemo finalized that. But at 42, just another reason this all stinks! Wondering if you've read others' threads about getting periods again...and if hormones should be shut down completely. Yep...never a dull moment. Maybe it's a fluke & your trip will be marvelously romantic (Ahhh to be 42 again!).

    Re neuropathy...I had none my first go around w/tax, cytoxen & h in 09. Started noticing it about 18 mos into navel/h/p. It seemed a bit better when navel was dropped in Oct, but has gotten increasingly worse each p/h tx. Pwilmarth...I have it on the bottoms of my feet too, but I walk through it since that's my preferred exercise. I love the analogy of not knowing where your toes are..explains it perfectly! Not really pain...absence of feeling.Can't wait to celebrate you on the 26th, July Buddy. I worked in an office w/4 other gals & 1 guy...all July babies!!!

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  • mikarae
    mikarae Member Posts: 163
    edited July 2015

    Hello everyone!

    Freygea - Fantastic that your tumour is shrinking! Hope for more shrinkage and good news with your bone scan.

    RonnieKay - Happy belated birthday! Hope it was a great day. Sorry about the second puberty but happy you are feeling good.

    pwilmarth - Hope the neuropathy resolves as you get further away from the taxotere treatments.

    Shutterbug - Bummer about getting your period. I had some spotting last month as was concerned it may be starting for me. So far nothing this month.

    Teakie - Hope you are well. I'm so glad you created this thread. Thank you!

    Nothing new with me (no news is good news). We are having an extra hot summer here. Our air quality is terrible due to forest fires. I hope for rain. We've been kayaking every chance we get to keep cool.

    Thinking of you all,

    Karen




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  • patti4511
    patti4511 Member Posts: 180
    edited July 2015

    Can anyone tell me how you feel on herceptian.I get my last taxol on Monday and as far as I know I will be on herceptian every three weeks .meet with Dr monday so I will see if that is the game plan still. just want my energy back worked full time weekly taxol 18 rounds with every here 3 weeks h & p and taxol and this last one energy level is low.what side effects are there with herceptian.

    Thanks

    Patti


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  • CarlaK
    CarlaK Member Posts: 158
    edited July 2015

    Patti-doing Herceptin alone will feel like a breeze compared to what you've already been through! You may have some leftover fatigue from chemo but that will get better in a few weeks.

    RonnieKay-Happy birthday-hope it was a great time!

    Freygea-sounds like you're having an excellent response to PHT-hope the good news keeps on coming

    Today I went for Herceptin alone. Makes for a lot quicker visit than when you get both P&H. We'll see if dropping Perjeta helps me get my appetite back. It never fails to bug me when oncology nurses seem perplexed as to why I'm still doing treatment and ask me when I'm supposed to finish. I can totally understand that from laypeople or healthcare folks outside of oncology, but seriously, oncology nurses at an infusion center don't know that Stage 4 stay on treatment for life?? Anyway, I'm tired, anemic and grumpy so I should go to bed!

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  • MANORAMA
    MANORAMA Member Posts: 6
    edited July 2015

    I am also under Herceptins Indian make Herjeta mylon and biocon product.

    Ist cycle is over. Dr watched that i may develop low BP ,pulse rate was tested. Advised if i get swelling in the legs i have to come back to hospital.every three months they ll take Heart scan.since this medicine may affect the left ventrcle function

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  • pwilmarth
    pwilmarth Member Posts: 235
    edited July 2015

    I know that Genentech lists neuropathy as a side effect of Perjeta, so it's a possibility that Perjeta is aggravating it. But I also have read that neuropathy can last a long time and at some level it may not go away.

    Like you, I will push past the discomfort for those things that I really want to do. Unfortunately, nurses spend a lot of time on their feet and at my last job, they do 12 hour shifts. No way could I do that, so I took disability and retired. I am much happier now. Just really starting to figure out how I want to spend my time and what kinds of activities I want to engage in. It's about quality of life, not quantity.



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  • pwilmarth
    pwilmarth Member Posts: 235
    edited July 2015

    patti4511

    Everyone is different, but my energy level bounced back immediately after the last dose of Taxotere. My last 2 infusions have been H&P only and I feel good. Going in for my third H&P only infusion next week.

    Every infusion has been different, so we'll see how it goes. But I am grateful to be off the Taxotere.

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  • jcfree
    jcfree Member Posts: 105
    edited July 2015

    I have been on H & P only since chemo ended March 31. Missed only one infusion in June due to my Mom passed away the night before infusion. My Onc said ok to miss an infusion. Just had masectomy three days ago. My next infusion is the end of July. Really H & P is a cake walk compared to chemo. Just a little fatigue after, the next day and some runny nose and eyes, but can live with that.

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  • Freygea
    Freygea Member Posts: 300
    edited July 2015

    I hope you are recovering well from your mastectomy JC.

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  • sueopp
    sueopp Member Posts: 1,541
    edited July 2015

    Be well soon JC. You surely have been thru a lot in a very short time. I am thinking of you. SUE

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited July 2015

    strange feeling today at treatment. I have a port that no longer gives a blood return, but it can be used to deliver the drugs. So my nurse preps me and sticks the needle in--which hurt really bad! Usually doesn't--from that point on I felt a deep pain, knot, something in my chest. Made me cough and it hurt bad. It reminded me of the time after a mri that I felt the exact same way. Like I couldn't catch my breath. So I just breathed slowly and shallow. Didn't mention it to the nurse. Nothing really happened. Just anxiety. Weird though. I would be so pissed if I developed an allergic reaction to h/p! Oh and I'm tired of going to appts! Especially when my kids are home for summer break! Grr. Vent over

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  • jcfree
    jcfree Member Posts: 105
    edited July 2015

    Thanks Freygea and sueopp for the get well wishes. Yeah, the last two months have not been easy. My Mom was in the hospital for 5 weeks before she passed away, when they had exhausted all options for her they let her come home to pass away so our family was able to be with her for two whole days with hospice nurses there to assist. Her burial was June 26 and then masectomy surgery July 7. Just a lot to deal with in a short amount of time. I had a UMX and cannot imagine getting a BMX at the same time. It's painful and the drains (UGH) have two to deal with. I imagine a BMX you have four. Just trying to get through each day and hopefully start to feel better soon.

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  • sueopp
    sueopp Member Posts: 1,541
    edited July 2015

    Dear K- I don't mean to be alarmist, but my medical people absolutely won't give treatment if they can't get a blood return from my port. When this happened to me, it was decided rather quickly that my port had to be replaced (no big deal actually, old one out, new one popped in, had treatment the same day). I learned that sometimes the port shifts a bit and presses on the artery, restricting the blood flow. In my case (very unusual) the tubing in the port had splintered under the skin and if they put anything in, it would have leaked out into the surrounding tissue (eek!). Please K, tell your doctor and see what they think - take good care of you, hon. SUE

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  • Freygea
    Freygea Member Posts: 300
    edited July 2015

    Getting frustrated due to my fatigue. I am taking benadryl for the daag taxotere rash and it is not helping the fatigue much. Does Perjeta and Herceptin cause much fatigue? I sure hope the rash stops once I have completed my last 2 rounds of taxotere. I realy hope my se's settle a bit because I do not want any excuses for the doc to have so that he can stop the taxotere.


    I thought I was done being a worrywort?????????

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