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HERCEPTIN and/or PERJETA Threads

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Comments

  • Beatmon
    Beatmon Member Posts: 617

    I have a wonderful port. Great placement...use the Emla cream 1-2 horse before treatment and feel absolutely nothing.

    To answer question concerning side effects...I felt “flu ish “ about 99% of the time, terrible cramps around diaphragm any time I bend, terrible knee pain hardly able to walk through the grocery store, some weird type of breakouts, extreme itching head to toe, extreme diarrhea uncontrollable despite medication, continued drippy nose and eyes and fatigue

    I’m now on Fentanyl patch, lowest dose, taking treatment weekly and was much improved. Doc noticed I jumped up out of chair onto exam table. Unfortunately I had a transfusion reaction and had to restart reaction protocol with IV Benadryl, solumedrol , Pepcid and Tylenol. I’m going to try to talk the doses down to a smaller amount. I can’t imagine the steroid for the rest of my life.

    BUT, it has been an amazing drug protocol considering 50 lung tumors banished to only 6-7 we are not sure are sleepers or benign.i hate to even list the long list yuck that accompanies it in my case. Feel guilty complaining because it sure works. I do recommend it highly despite all of this. I’ve seen my son happily married and my daughter graduate college. Now is I could get a grand baby...lol ( I am one of those people with many drug sensitivities)

  • kjones13
    kjones13 Member Posts: 662

    yes. I have been on h/p since oct 2012. No question or concerns from insurance..:hopefully that continues! Not sure why anyone, one year out, would not continue to be approved. That’s just craziness to me...especially since I fully believe I am alive because of these two drugs!

    I was on tamoxifen but switched to zoladex (shot) and a pill that starts with an a...holy cow, I can’t remember! But I may have an oopherectomy at some point. Not sure. Please feel free to ask any questions! Not nosey at all! I remember looking for hopeful stories...i’M so thankful I can be that for someone!!

  • jackboo09
    jackboo09 Member Posts: 780

    Hi Kjones,

    I would like to add my thanks for posting your experience of these drugs and to say how delighted I am that you are doing so well.,

    I am one year out now and always looking for reassurance as I'm sure we all are.

    I have read some studies that give various prognostic factors as an indicator of long term NEAD. They were things like: de novo disease, younger age at dx, low tumour volume, bone met only and ER positive. However, I think the data is fairly sparse and I hesitate to post this with full authenticity.

    May I ask if you were de novo or/ and Oligometastatic on diagnosis.

    Diet is another one that always nags at me. I do drink and am in the overweight category, not obese but I don't juice, deny myself some sweet treats and I don't exercise as much as I would like. This prays on my mind a little, but then I return to thinking that at this present time, perhaps there is no magic formula for long term remission?

    Would welcome your thoughts?

    Liz


  • daywalker
    daywalker Member Posts: 77

    Here in South Africa we get herceptin in a 5 minute injection form, it became available about 6 months ago..must say, I love it. Just curious whether you have that option in the States?

  • jackboo09
    jackboo09 Member Posts: 780

    Hi Daywalker,

    In UK Herceptin is available as an injection, however I am also receiving a second mono- clonal drug, Perjeta which I receive as part of a clinical trial. I can only get Perjeta via this trial and that means via IV.

    Liz

  • kjones13
    kjones13 Member Posts: 662

    no shot here in the states that I know of, but I am small town USA 😉

    Liz—I hear ya! Let’s see if I can remember all the questions...I was 34 at time of stage 4 de novo dx. I had a 12cm tumor in right breast. 11/11 lymph nodes were positive. 3 liver mets ranging in size from 2.5 cm to around 1cm (I think this is fairly accurate). I had one 2cm met on my L5. I keep forgetting to ask my doc regarding his opinion on Olgometa. So I would agree with that study. Young, in decent shape (was a college athlete), small tumor load, oh and my liver mets were 50% Er positive a small opposed to my breast tumor was only 5% Er+...there has to be something to this. I have lost a lot of people in the last 5 years. Lot of young people that had lower stage then it came back and they are all gone. Luck? I don’t know the answer...BUT let me put your mind at ease about food and exercise...I don’t exercise because I can’t (to many degenerative spots on spine)...i burn the majority of my calories sleeping. Food...I eat what I wany. Lots of sweets if i’m being honest. A friend of mine had lower stage, then remission, ate like the most healthy food ever, died in two months after finding mets...crap shoot I tell ya!

    PHone acting up

  • zarovka
    zarovka Member Posts: 2,959

    I am not HER2+ in my biopsies but my bloodwork shows HER2 protein abnormally high and rising. Since there is no other possible source than the tumors taking over my liver, my doctor has prescribed a dose of Herceptin and Perjeta. I get my first infusion tomorrow. Here's hoping it goes well.

    In any case, not technically HER2+ but joining you guys at least for one infusion while I am getting immunotherapy. Apparently the herceptin/perjeta gives the NKC cells something to hang on to. They are supposed to latch on and start killing. Let's hope.

    Likely back soon with more questions for the experts ...

    >Z<

  • illimae
    illimae Member Posts: 5,747

    Z, that’s very interesting, I’ve heard of other mets being HER2-, when the original is + but not the other way around. Welcome to H&P :)

  • Maire67
    Maire67 Member Posts: 418

    Zarovka, my understanding is Her+ can change. Good luck with Hercepti. It worked for me 12 years ago. Hoping it works for both of us now. No side effects for me on Herceptin alone.

    Today I saw some rash on my remaining breast. 2 years ago I had biopsy of suspected spot there that turned out to be atypical cells. I know Tykerb can cause a rash but I immediately looked up pictures of skin mets on Dr Google. When will I ever stop overreacting ??
    I see my mo on Tuesday. Tykerb Side effects are some nausea,diarrhea and fatigue, mouth sores and something going on in the vaginal area. I will get results of my scan on Tuesday.

    Loving bananas toast rice. Saving the applesauce for lunch today. Grocery shopping is great fun when you can’t eat anything but need to cook for your family.

    Take care all. Maire
  • Kkrenz
    Kkrenz Member Posts: 76

    Z...I had no idea that they can check for HER2 in your blood. Everyone on this site has expanded my knowledge 100x. I'm asking my mo about this next visit...the list is getting long. Good luck in Japan and keep us posted. I had 8 biopsies when diagnosed....all her2+., so I'm curious if checking the blood would make any difference for me....but it may explain other's progression. Did you have that test done in Japan?

  • zarovka
    zarovka Member Posts: 2,959

    Yes. I am in Japan getting treated by a top cancer researcher. The HER2 blood test is not done here routinely either nor do they use it in the regular clinics to determine whether herceptin/perjeta should be use. I am in a private clinic that specializes in immunology. The HER2 receptors make the cancer visible to the immune system, particularly when one of these antibodies latch on to it. They get miracles with this strategy ... total remission with gastric cancer which is completely unheard of. So that's why he wants me to get at least a bit of Herceptin/Perjeta before I leave. He would like me to continue when I get back to the US but it's unlikely that the insurance will pay without a biopsy that shows I am HER2+. It's too expensive to pay for on my own so ... I'll explore my options but its unlikely I'll be able to continue beyond the infusion I get today.

    I hope it is okay if I can be an honorary member of your group.

    Afraid of the infusion today after reading about possible side effects, but it doesn't seem like anyone here gets them .... so that is heartening.

    >Z<

  • Kkrenz
    Kkrenz Member Posts: 76

    try not to be afraid....I've found H&P very tolerable...I started with herceptin, perjeta and taxotere . Once I dropped the taxotere after 6 months, it has been smooth sailing. It really is an easy protocol..at least for me. No premeds either....good luck and try not to worry too much.

  • jackboo09
    jackboo09 Member Posts: 780

    Z,

    I echo Kris’s point about HP being easy to tolerate. Welcome on here. We have chatted before, I wish you all the best on your journey.

    I wonder if immunotherapy is something to look into. I am currently NEAD. Next scan is Friday!

    Li

  • zarovka
    zarovka Member Posts: 2,959

    They gave me an anti-allergy drug and an anti nausea drug prior to starting Herceptin and Perjeta infusions . They are starting with a low dose of the drugs 420mg Perjeta and 300mg Herceptin. My understanding is that the loading dose of Herceptin is 8mg/kg or about 560mg. They are taking 90 minutes to infuse Herceptin and an hour to infuse Perjeta. So it's a long infusion. However, the anti-allergy bit put me to sleep for 2 hours. Just woke up, though. So far so good.

    Back at hotel. No reaction so far. Easy peasy.

    >Z<

  • kjones13
    kjones13 Member Posts: 662

    you’ve got this z! 420 is the standard does of perjeta. Good they took precautions. Best of luck

  • jackboo09
    jackboo09 Member Posts: 780

    Wishing you the best after your treatment Z. You’re going to be just fine. X

    L

  • mommyerin
    mommyerin Member Posts: 102

    bstein- I'm on AIs as well (letrozole) as an added precaution. I'm really not liking the side effects either. Aches, insomnia...a part of me wants to "gamble" on H&P alone. Some nights I do skip that little white pill :-P

    Kjones13- it's so nice to be reminded how effective these drugs can be! So glad you're still doing well after 5.5 years!

    Z- Welcome! Ive been following your adventure in Japan a bit on the liver Mets board. I’m hoping you get an amazing response from the added H&P!


  • DL3
    DL3 Member Posts: 134

    Hello ladies! I am stage IV HER2+ and will be leaving my Kadcyla treatments due to a slight continuous progression and going on Herceptin and Perjeta only. I ave had herceptin and perjeta in 2015 when I was receiving TCHP chemos . My platelets ran low on kadcyla on occasion and my AST was rising slightly altho rest of blood work good.

    With you ladies, do you have any issues with platelets or the AST/ALT numbers? I know we are all different. also, what about hair? I am not wanting to lose my hair again... not yet. Diarhea issues ?(sp) (if yes do you have this SE for only couple days after infusion) Have any of you seen your tumor shrink from this combo alone?

    My onc was going to put me on herceptin with low dose xeloda but I wanted to try and give the herceptin and perjeta a shot.

    Thank you so much for any and all replies.


  • Kkrenz
    Kkrenz Member Posts: 76

    DL3 - Welcome!  I personally have no issues with Herceptin/Perjeta, other than some dizziness/lightheadedness.  We have ruled out all other reasons for the dizziness, so the only thing left is Herceptin/Perjeta.  I have no issues with blood work (all normal), and it doesn't make your hair fall out.  Mine all fell out with Taxotere, but is now growing back.  My tumors were all dead after the 3rd Taxotere treatment, and am hoping that H&P will keep them that way.  I cannot answer if H&P can shrink tumors on it's own, but I would expect that it can.  It is blocking the Her2 that the cancer requires to grow, so it would make sense....but I'm not a doctor.  Perhaps others will chime in!

  • DL3
    DL3 Member Posts: 134

    Thank you so much Kkrenz for your reply! I really appreciate it. My first fear is hair loss. when I was on TCHP well... i lost my hair. I mean if I have to go back to very hard chemo to lose hair vs surviving ... I will survive and lose my hair. I think mentally losing my hair was worse for me than my mastectomy in 2015. I am Praying it will melt these 2 teeny nodules .


  • livebig
    livebig Member Posts: 60

    Welcome Z and DL3!

    Herceptin/perjeta have packed a powerful punch without a ton of side effects for me so hoping you do very well on it.

    There are studies that show there could be a benefit in pairing Herceptin with a taxane (like taxol or taxotere) but I believe herceptin/perjeta are the main reasons my her2+++ cancer is now knocked back.

    I agree with kkrenz that I had no issues with blood work and no effects on hair for me. My only symptom was on infusion day I had a little bit of cramping in my stomach.

    I actually don't take any premeds now that I am just doing herceptin by itself. So I'm curious if the premeds are for the perjeta? Or if you could trial skipping them?

    Wishing you all the best

  • illimae
    illimae Member Posts: 5,747

    DL3, as others have stated H&P is pretty tolerable, no real SE’s for me this past year except for some mild skin type allergy (pink bumps like an insect bite a few days/1 week after infusion). No D for me but I have heard of Perjeta being called Poo-jeta, lol

  • Almosthere
    Almosthere Member Posts: 177

    I haven’t got those rashes in a long time...forgot about that! No real side effects 2 and 1/years out.

  • jackboo09
    jackboo09 Member Posts: 780

    Hi everyone,

    I am one year on from stage 4 diagnosis and waiting for results of a 3 month scan. If all is clear, I will move to another scan in 6 months time which would be great.

    My side effects are very mild, intermittent neuropathy in hand and feet but I can’t say it is really an issue. I have achy joints, but that is the letrozole. I am 48, but knees are not good and one is currently swollen and painful.

    I do have a puffy area over my left upper rib cage that I am stressing over, but as far as I know am still NEAD. Last scan was Nov.

    Wishing everyone the best on this thread. For me HP is very tolerable.

    Liz

  • wam
    wam Member Posts: 98

    Hi all.Dl3. I had H&P when I was diagnosed stage lll It was very easy. That taxotete was rough. I am starting H&P again with vinorelabinr

    My question is will it work. It did nothing for my original cancer. I grew during treatment

  • jackboo09
    jackboo09 Member Posts: 780

    Hi Fraidycat,

    I read your post with interest. Firstly, sorry to see that you progressed on HP. There seems to be no rhyme or reason why some fair well on these drugs and others progress???

    My stage 4 journey began with cancer in my mediastinum chest lymph node. At first I thought I might be stage 3 as these nodes are loco regional.

    What was your experience of staging with chest nodes?

    Liz

  • wam
    wam Member Posts: 98

    Hi Liz: Thank you for responding. I was originally diagnosed stage 3c in 2015 with a subclavicular node that was killed with radiation. However, my tumor markers were rising so they scanned. I have lung and heart nodes that are positive. I was on letrozole alone since SEPTEMBER. 2016. It stopped working recently and I I am moving to the H&P and Vinorelbine.. It is so nice to hear how well you are doing! I am just praying for time for us all. I start chemo next week. I am fighting insurance for the Perjeta, of course.

  • jackboo09
    jackboo09 Member Posts: 780

    Hi Fraidycat,

    Great to hear back from you. Sorry that you progressed after the rads to the sub clav node. I initially had a faint hope that rads to this mediastinum LN would achieve a cure but a) I am not eligible for rads now as I am NEAD and b) it is of course no guarantee that the beast won’t pop up elsewhere.

    HP is very tolerable. Here in the UK I am lucky enough to get Perjeta through the cancer drugs fund. I hope you get it as I feel it is an effective combo.

    Haven’t heard about the Vinorelbine- is that the chemo drug?

    I see you have experienced the joys of Letrozole. I have very achy joints on this drug but hopefully these anti hormonals are worth sticking with.

    Keep in touch and ask me about the HP when you get going.

    Thank you for your kind comments about me doing well! I am waiting on a scan result right now and hope I will continue to stay NED.

    All this is so hard to deal with. Lucky we have each other on these threads.

    Liz

  • DL3
    DL3 Member Posts: 134

    Hi ladies! now isnt perjeta a chemo? as I thought it is. just verifying with your knowledge

    also, Has anyone had a reocurrence and went on HP only and the HP got rid of your nodule(s) ?

    I have 2 nodules with my reoccurence in lung one is approx 18 mm the other is about 9mm

  • mara51506
    mara51506 Member Posts: 6,593

    No, Perjeta is a targeted therapy. It only affects the HER2 protein. Chemo is systemic meaning it affects all of your bodies tissues.