Perjeta/Herceptin/Taxotere

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  • Kite
    Kite Member Posts: 265
    edited May 2014

    I'm so happy I found this board!!! What a relief! I'm finished with round 2 and reading everyone's experiences is so helpful. Thank you! 

    Mine have been very similar. The Taxotere dropped my WBC more then the MO thought they would so after this second round I got Nulesta and will be getting fluids in the AM. So far I don't have the rash. 

    Spicy-- thanks for your post about your experience. I can't tell you how grateful I am for the info. 

    Nite ladies! 

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited May 2014

    Kite - I had neulasta shots each time.  And i took Claritin every time but #1 for the bone pain.  I took it the day of chemo (so the day before Neulasta) & for 6 or 7 days afterwards.  It didn't totally take away the bone pain but it sure muted it.

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  • Kite
    Kite Member Posts: 265
    edited May 2014

    Minus two- thanks for the tip! I did know about the clairitan from my pervious chemo but I had forgotten when to take it. I didn't take it and thought I was gonna be okay. Last night it hit me bad. My arms and jaw felt like of been in a wreck. 

    Does anyone else have a real swollen throat after this treatment? It's not sore just swollen. Have to take such tiny bites! 

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited May 2014

    Andi67...that's the year my DH graduated from hs...probably the year you were born????  It's ok to be in your own bc bubble, I go there often, but then realize this place gives me an understanding and comraderie that really isn't possible for me to find elsewhere, and I come back :)

    You're right...there are so many different treatments & this is such a great place to get educated.  Navelbine is an older drug. My onc said it was in testing when the maker sold it to another company that had other drugs it was focused on so Navelbine wasn't a priority for marketing.  She likes it as a first line drug for recurrence.  Her first statement was that she's seen great response (stable at 8 mos) & it doesn't make you feel or look like a cancer patient.  My first time thru was w/cytoxen, taxotere, herceptin.  Now that perjeta's approved..that's another bullet.  I have Nav, herc, perj on day 1, nav & neulasta (nav is tough on white cells) day 8 & off for 13 days (a blessing).  So-2 wks on, 1 wk off.

    One thing you'll see on various sites: tumor markers can see saw.  My onc warned me up front about that...and she's right.  I have them & liver enzymes drawn every month (blood tested every treatment, of course).  Not all oncs focus on them but it's part of the whole picture.  

    Is it the faslodex causing pain?  I know some have pain w/herceptin.  I'm lucky not to have pain w/this treatment, mostly fatigue, dry eyes, drippy nose & thin hair..not too bad!   AWESOME your pet scan showed stable!!!!!   We'll pray for that for a very long time!!!!  But it ticks me off that we still have that thought still there....

    Good luck...thinking about you & hoping for more stable news!!!

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  • Andi67
    Andi67 Member Posts: 423
    edited May 2014

    RonnieKay..... yep, 1967 is the year I was born. Smile  Thank you for all the feedback. I am definitely going to ask about Navelbine. I need to get all my diagnosis, etc... posted. I should have mentioned that my first diagnosis was in 2009 - but wasn't diagnosed as Her2+ so had lumpectomy and radiation only. Then mets to liver and bones in 2012 and that's when I had chemotherapy, etc. I think I have seen you on the Stage 4 Fitness thread, haven't I? It doesn't sound like anything is making you stiff and achy? I read that thread and inspires me, but I get so frustrated because my legs are just so, so stiff. I used to run marathons and now can barely run a mile. I am going to try swimming.... everyone thinks that might help. I do walk/hike a ton, which I love....so I am grateful that I can still enjoy that.
    I am not sure what it is that is causing the pain and stiffness. At first I thought it was the Lupron/hormones, but when I look back through the diary I kept during chemo last year, it started after the first Herceptin treatment..... so maybe that's it. That's really the "only" SE I have.... drippy nose once in a while, but no fatigue or thinning hair.

    I have another PET scan scheduled for the 28th and meet with Oncologist on June 2nd before my next Herceptin/Perj treatment so I will keep you posted!

    Thank you!

    Andrea

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  • EMAW
    EMAW Member Posts: 132
    edited July 2014

    Started with Perjeta & Taxotere on July 22nd, 2014.  Have been on Herceptin since the beginning (first TX was 12/13/2010, but received Taxol back then as well, in fact, had the Taxol for 56 weeks until January 2012).

    Stayed with Herceptin every 3 weeks.  After Tamoxifen (worked well, caused blood clots), Aromasin, Faslodex and Arimidex, we're finally back at the chemo.

    SE's are numerous but I'm managing.  Today, exhaustion is starting to set in.  I will keep walking for exercise this time as during the previous chemo, I was so ruined by a bad liver that I felt very depleted.  Didn't realize how good the walking is for my declining metabolism, declining due to menopause setting in during the first round of chemo in 2010-2012.

    SE's:  gastric issues (severe acid reflux & diarrhea), sore gums, kidney pain that has seemed to end on Day 5, acne & sore throat.  Am taking Omeprazole for the heartburn, and occasional Ibuprofen for the sore throat.  

    Was told I would be on this for 4-6 months.

    Thanks for this topic, ladies.

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  • spicypetunia
    spicypetunia Member Posts: 83
    edited July 2014

    update: I've dropped taxotere after round 8 of THP. I've just had my first infusion without it and the good news is that I'm stable - the better news is that if I can stay stable for the next 3 months I'll qualify for surgery (mx & liver ablation). :)

    over the 8 rounds: liver mets have essentially resolved and the primary breast tumor is down to about 1cm (from close to 4cm at dx). Lymph nodes are back to normal size and another nearly 4cm breast tumor has completely resolved. an MO explained that there are various possibilities for the remaining mass: 

     - it could be scar tissue or mass of dead cells - it could be a DCIS that hasn't learned to invade yet - it could not be her2+ (even though it was biopsied and tested her2+++ - long explanation for this), or it could have just stopped responding to taxotere but holding stable with H&P. 

    in any event, if I can remain stable, cutting it out makes the most sense (got this from 3 different institutes).

    fwiw: there doesn't seem to be any clear-cut data on the benefits of continuing Tax past what appears to be best response. it was explained to me that the study was done with participants aiming for 6 months of THP (although many didn't make it due to tax toxicity). 8 rounds brought me just shy of 6 months but I have had worsening SEs - with neuropathy being the most concerning. so, knowing that surgery and radiation are coming up, I chose to stop at 8 and start recovering from SEs and get in shape for surgery. 

    the last rounds, chemobrain and fatigue got increasingly worse. ritalin did help dial it back - not to normal, but to much more tolerable. also had nausea throughout the three weeks towards the end - meds completely helped.

    best wishes to all and fingers crossed for best possible responses with as little suffering as possible.

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  • Andi67
    Andi67 Member Posts: 423
    edited July 2014

    Spicy - I only had six rounds of Taxotere....that's all I could manage before my oncologist decided the risks outweighed the benefit, and neuropathy was also the SE that was the most concerning. I'm wondering - do you have pain, or just numbness, and is it in your feet and hands.....? Just curious. I had my last treatment over a year and a half ago and still have the neuropathy.....although I have been on Herceptin every three weeks and still stable, so that is positive. I've asked about liver ablations but apparently I am not a candidate....I'm unclear as to why. Something about my bone mets being worse than my liver mets. I need to clarify again. Anyway - good decision on stopping to get in shape for radiation and surgery, and good luck with both....you will do fine!

    Andrea

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  • spicypetunia
    spicypetunia Member Posts: 83
    edited July 2014

    Andi67 thanks for the good wishes.

    neuropathy: mostly just feet - a gnarly burning sensation and occasionally numb fingertips. before I started gabapentin and supplements it was pretty terrible - I needed to rest my feet on ice packs and definitely couldn't go for walks or do anything that put pressure on my feet.

    I'm told gabapentin just masks the neuropathy, but between the gabapentin and supplements, it's been pretty well under control since round 2, although, I only wear very comfy shoes these days. we'll see how things are when I dust off my stilettos.

    Doc's advice (from both a traditional and an integrative): it can take a long time to clear up - 2 years is not rare - and it is possible it will be permanent. in the mean time, both recommended I stay on gabapentin and if in 3-6 months I've felt no twinges, I can slowly try working down the dose. integrative said to keep up the supplements for the same amount of time and continue with the other things I've been doing to "help": glutathione added to the infusion, infrared laser treatment to hands and feet when possible, acupuncture/acupressure/reflexology, regular stretching of calves, ankles, feet, hamstrings. I'm sure not all of these things help, but for now, I'm still willing to try.

    there are other meds that have shown to help but I have an allergy - I believe lyrica and I can't recall the other. I was also given a topical cream that helped with the rawness/twinges/humming. I hope your neuropathy starts improving soon and that you can find something to alleviate it in the meantime. let me know if you'd like specifics on meds/supplements, etc. - I'm happy to share. 

    congrats on stable since stopping tax!! so wonderful to hear - it makes my day. :)

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  • Andi67
    Andi67 Member Posts: 423
    edited July 2014

    Spicy - thank you for all the feedback. Which supplements are working for you? I tried Gabbapentin but it didn't help....I take Lyrica three times a day and it helps some, but there are days when I am completely numb all the way up to my knees. It drives me insane. I am still wearing old lady shoes, although I did buy some sandles with heels this summer and once in a while I totter around on them.....dangerous...I will probably break my ankle. I am very stiff from what I think is the Herceptin, and I think that contributes to the neuropathy. I need to do a better job of stretching....I know that helps. I have found the one thing that helps the most is reflexology....I have a wonderful little place that I go to once a week where they soak your feet and massage the rest of your body for 15 minutes, and then your feet for 45. It's amazing, and my favorite thing to do, and is only $28!  I keep hoping it is going to go away....and my right foot has definitely improved, but my left hasn't. I really feel the Herceptin is contributing to it and my oncologist finally admitted that that is probably true. Oh - and the other thing I just discovered (from a thread somewhere on this forum) is Infrared Sauna...I have only been twice, but it's supposed to really help.  Something about increasing the blood flow to your feet.

    Anyway - would love to know which supplements you are taking. I have tried several, but maybe missed some. I hope yours goes away completely SOON.

    xo

    Andi

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  • spicypetunia
    spicypetunia Member Posts: 83
    edited July 2014

    Andi67, bummer to hear that Herceptin may be giving you such problems - truly stinks.

    Otherwise, sounds like we were given the same tips! :) I heard about the infrared sauna but haven't found one in my area that isn't cost-prohibitive - dh was teasing that we could buy one online through costco and put it in the living room. ha ha. I guess if it worked, I'd probably be willing to put it anywhere in the house. Please keep us posted on your results. :)

    I'll dig out my list with the purpose for each supplement (I take too many to remember the function of each one!) and will post as soon as I find it -- sorry for the delay! 

    I agree about reflexology. I hope you get to enjoy a session this week!

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited July 2014

    I'm laying in bed...wrestling with my tingling feet & there you are...my sisters in neuropathy!!!  Ugh.  After 18 mos on nav/herc/perj, my feet are giving me fits.  My toes are the worst part, so tingly, burning. My onc hasn't said anything about supplements, etc....Andi & Spicey...I'm hanging onto your every word!      Tell me how bad it gets before they adjust meds, etc.  Spicey...will be hoping 3 months find you still looking great & a good candidate for surgery!  Andi...I'm happy you're doing stable so well...although wishing herceptin was kinder.  I had no problem with it 5 years ago & don't really notice it now.  Other than neuropathy, I feel pretty good.

    I'm going to check into acupuncture first, I'm thinking.  Take care :)

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  • Andi67
    Andi67 Member Posts: 423
    edited August 2014

    Spicy and RonnieKay, I love it that you can understand, although that means you have the same numb, tingly feet that I do, and I don't wish that on anyone.

    I went to the infrared sauna again today.... not sure of the long term benefits, but it certainly feels wonderful to sit in the heat and sweat. I found one at a Healing/Holistic spa close to my house and it's only $10 per time, or 5 for $40 and you go 30 minutes. That's funny that you were joking about buying one from Costco because I thought the SAME THING. We just moved into a new house with a huge basement and as I was basking in the heat today I was thinking about where I could put one. A friend of mine works at the spa and she said she thought they were less than 2K..... and they are tiny little things....they would really fit a lot of places. Anyway - it's my new found bi-weekly appointment, so I will let you know if I get any relief.  The reflexology is the best....after one session of that I feel better/almost normal (my feet, anyway) for 3-4 days. All I need is an infrared sauna and a massage therapist to move in with me and I'd be set!  Too bad insurance won't cover those things! I have tried acupuncture and unfortunately it didn't help.

    And....I had an appointment with my onc. today to discuss changing meds. She admitted that she is afraid it is the Herceptin/Perj that is causing my issues....she is actually leaning toward blaming the Perj. since it's new and there is less data on it. I am so afraid that I sound like a baby and that I am making too much of this, but I am so, so stiff... all day....and I am miserable at night - I can barely turn over without pain everywhere. When I get up in the morning I hurt all over....some of it goes away and some doesn't throughout the day. And when my neuropathy is bad it is literally up to my knees - completely numb.  She actually wants to take me OFF the Herceptin/Perj for 3-4 months to see if it makes a difference - and not put me on anything else. She said she will watch me closely. I'm scared to death - my visits every three weeks are like my security blanket.

    Ronnie Kay - have you noticed yours getting worse as time goes on and it builds up in your system? Or no change? And you have no stiffness or painful joints? I feel like the side effect queen....Spicy - are you feeling better since you dropped the Taxotere?

    I'll keep you both posted on the Infrared Sauna..... and what I decide on taking a break from Heceptin/Perj.

    Take care and hope you both have good weekends.....

    xoxo

    Andi


     

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2014

    Andi - I had 6 rounds of Taxotere/Carboplatin/Herceptin & Perjeta.  My feet are blocks of ice - toes, balls of the feet, up several inches above my ankles.  My fingers are also numb.  After surgery and different AC chemo when I went back on Herceptin, we did delete the Perjeta since their web site lists neuropathy as a side effect.  Only 2 more months with the Herceptin.

    There is a good neuropathy thread on BCO.  I did go to a neurologist who finally admitted that while 70% of patients get "better", that will be "better" as a relative term & will not likely ever get back to where it was before chemo.  And it can take up to 2 years for feeling to come back.  I'm just hoping I won't be in that 30% who don't get any improvement.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2014

    Here's the neuropathy discussion - Vent About Permanent Neuropathy

    https://community.breastcancer.org/forum/69/topic/...

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  • Andi67
    Andi67 Member Posts: 423
    edited August 2014

    Minus Two - THANK YOU for the link to the Permanent Neuropathy thread! I hadn't seen that one! My feet are the same - blocks of ice. I have some neuropathy in my fingers as well although it comes and goes. I am also so relieved to hear that the Perjeta could be causing some of my issues....neither me or my oncologist had even thought to check the site for side effects.....I just feel vindicated - like this isn't all in my head. I am confused by your diagnosis.... doesn't look like you are Stage IV and that is why you are going to get to go off of the Herceptin? I hope you will keep me posted and let me know what happens when you go off....and if things get better. I hope you aren't in the 30% either.....I am afraid that I am as it's been almost a year and a half and mine is still bad. :(  anyway - thank you again! I'm sorry you are a fellow neuropathy sister but you post really did help me so much......

    Andi

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2014

    Andi - you're right.  I'm stage IIIB so I'm only continuing Herceptin for a year.  I went to a Mets conference and the MD Anderson people said Perjeta absolutely didn't cause neuropathy.  BUT, the Perjeta site lists that as a side effect & I didn't want to take any more chances so my continuing infusions are Herceptin only.  MO tells me that way we can hold Perjeta to use in the future.  Oh joy!!!  Sorry to be posting in this Stage IV forum.  I'll head back where I belong, but do appreciate reading here.  You ladies are awesome.

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  • Jaytee
    Jaytee Member Posts: 1,211
    edited August 2014

    Well, I have just had my 4th treatment. Had cat scans of the lung and abdomen last week. My onc was on vacation, so I just saw her today.....told me that the lymph nodes in my lung and abdomen were no longer lighting up on the scans. The 3 spots on my liver are almost 75% gone. Sounds like this regime is working for me! Was happy to hear that. We are continuing on with the treatment...I asked how many I would still have and she wasn't ready to give me a definite number....guess we will watch and see. I don't seem to have too much new neuropathy. Since my first chemo that ended in 2011, I have had it in the middle finger of my left hand...the other fingers on that hand are getting a little tingly. I have been putting on a pair of ice gloves during the taxotere infusion, hopefully that is helping. So far my toes don't seem too affected (knocking on wood, that it stays that way).

    Hoping that all of you getting this treatment combo are doing well. 

    judy

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  • EMAW
    EMAW Member Posts: 132
    edited August 2014

    Are any of you ladies taking L-Glutamine to help alleviate your neuropathy?  I did some research on this a few years back, had my Oncologist confirm that it was a good idea, and took it while on Taxol.  Now that I'm on Taxotere (just started last month), I'm taking it again (30 grams/day).  Google it; there's some good research on its efficacy.  

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  • spicypetunia
    spicypetunia Member Posts: 83
    edited August 2014

    2 weeks later... sorry for the delay. here are the supplements I take to help with neuropathy:

    Acetyl L-Carnitine - also good for chemo brain

    Vitamin B-6

    L-Glutamine Powder

    Alpha Lipoic Acid

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  • Bippy625
    Bippy625 Member Posts: 890
    edited August 2014

    hi ladies, has anyone experienced their tumors melting away? I felt twinges right after chemo in both....now, 11 days out from first chemo, i try to locate them and cannot. They were each the size of half a grape, hard and very easy to find. What is happening, and believe me i am not complaining!

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  • Andi67
    Andi67 Member Posts: 423
    edited August 2014

    Thank you Spicy I'm taking the B-6, and I will get the others..... a little help for Chemo Brian would be good, too... it's been almost two years since I had chemo and I am afraid the effects are everlasting. My neuropathy is SO bad today.... ugh. Some days I think it's getting better and other days, like today, I am convinced I am stuck with it. I'll get those supplements tomorrow!

    XOXO

    Andi


     

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  • EMAW
    EMAW Member Posts: 132
    edited August 2014

    Bippy625, I'm having a very good response to this drug regimen.  Had some skin METS on the left breast that is rapidly disappearing after just 1 hit (7/22/14) and now again yesterday.  Lump also is less hard & Doc did an exam last week (8/14) and lymph nodes are back down to normal.

    Yes, it's a really great system if your body can tolerate it.

    My new Doc knew to try more steroids this time (4 mg. Decadron twice/day before, day of, day after) along with the infused pre meds (10 mg. Decadron or Dexamethasone) and I'm going to hope for less SE's than last tx.  Last time, I got the whole slew of stuff, except for nausea (which is a reasonable negotiation, I think).  

    Very glad to hear it's working for you!

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  • fujiimama
    fujiimama Member Posts: 800
    edited September 2014


    Two years on perjeta and herceptin. Checking in. I've been on this treatment for a long time. It's still working. Main SE is still the stomach purge. It hits me most during the second week. I also and type two diabetic. Had to drop metformin. Stomach is recovering. Discovered victoza has a constipating effect. Sweet tummy bliss. Hang in there if you're just starting or still have taxo's in the mix.

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  • spicypetunia
    spicypetunia Member Posts: 83
    edited September 2014

    thanks so much for the update! it's so helpful -- and nice! -- to hear how well you're tolerating tx. I'm a couple months into just h&p (really hope I can keep it up!) and am just starting to figure out what is leftover tax-trouble and what's h&p. 

    I'm still getting some nausea here and there - a zofran covers it. some achy joints, but the more active I am, the less they bother me. fatigue, chemobrain and neuropathy are still issues, but likely all due to taxotere. ritalin has been very helpful with fatigue and chemobrain. wasn't sure if it was really doing anything - cut back, stopped completely, and there was a definite difference. happily taking it again with no adverse SEs.

    most annoying issue is the same as fujimama. been through immodium (up to 8 in a day) and lomotil to pretty much no effect - but still able to be as active as I like - I drink a TON of water to stay hydrated. recent new option: opium tincture. got the rx from onc at Mda. I'm giving it a try and so far, things are better. still a little cautious with driving - want to make absolutely sure it doesn't impair abilities. so far, it hasn't made me drowsy or impaired. as always, remember to see for yourself - everything hits everyone differently.

    happy to report that so far, so good!

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  • Jaytee
    Jaytee Member Posts: 1,211
    edited September 2014

    I am going to be having my 6th treatment next Wed. So far the taxotere seems to be knocking out the mets in my liver.  Onc hasn't said anything yet, but I am assuming that I will be due for scans again soon. It's almost been 3 months since the last ones.  She has suspended the herceptin and perjeta for awhile though. Had an echocardiogram on my heart after treatment #4, and my ejection fraction dropped from almost 60 to 45. I am going to have another one next week. Anybody else having any heart issues while on herceptin and perjeta?  

    I need to at least get another full year of herceptin .....sure hope that I can. I have not had heart issues in the past before bc treatment. My initial treatment back in 2010 started with A/C......that was the one that caused my first drop in the ejection fraction. Had to postpone the start of my first year of herceptin...but I did get that year in......the lowest ef went to was 42 and she almost stopped it then. 

    Thinking of everyone and hoping for good results!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2014

    Not sure if this is the right place to post so mods, please feel free to move around if needed

    Researchers have more long-term data on the THP regimen, and the news is very good. The long term benefits apparently exceed what they had already noted in time to progression data. 

    http://www.esmo.org/Conferences/ESMO-2014-Congress...

    So this is a fantastic piece of news for all women who like my wife or many in this thread recently started or are on this combination. 

    Love to all! 

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  • fujiimama
    fujiimama Member Posts: 800
    edited September 2014


    Thank you! It's still working for me.😊

     

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  • Andi67
    Andi67 Member Posts: 423
    edited October 2014

    Hi everyone..... I've been stalking this thread but haven't said much in a long time. I'm glad to hear everyone is doing so well. I don't have any of the stomach issues that others are mentioning, or the fatigue, but I am pretty sure that my stiffness and achy joints are worse than anyone's here. Mine just get worse and worse and worse. I actually got to take a H&P break for about 2 months....it slowly got better, as did my neuropathy...I am back on Herceptin alone now and already the stiffness and muscle aches are awful. On a good note, it seems to be working as I am at 2 years with no progression..... and every time I leave the doctor I am really am thankful.

    Spicy - how is the neuropathy? I think mine got a little better on my Herceptin vacation, and it actually seems to be steadily improving even now.....although I am realizing that neuropathy isn't just numbess in my feet; it's muscle atrophy and weakness and probably part of the reason I can't get my all of my strength back. That I know is left over from Taxotere.

    I shouldn't complain - it's a fantastic combination and we are so lucky to have the treatment available to us!

    Thinking of everyone - have a good weekend.

    Andi

     

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  • Woodylb
    Woodylb Member Posts: 1,454
    edited November 2014

    hello ladies,

    i am new to this thread , i just started this combo, i got my first one yesterday. From what i know only the taxol and all the taxanes causes the neuropathy , and it stays very long after that mine after docetaxel took over a year to go. i did not use any meds , i refused lyryca and others. walking help a little. but i got a machine from canada which is FDA approved it sends pulses to revive the nerve , i will try it this time around and let you know if it works. i am not getting taxol in one injection i am getting it weekly and rest one week. the herceptin, perjeta are every three weeks. i am happy to see this thread as i am also new to `Her2+ , i am ILC and it has never almost turned positive. i hope this one is the right one for me as i was running out of options. to all of you ladies out there the best of luck and many many years.

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