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HERCEPTIN and/or PERJETA Threads

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Comments

  • Bluefrog76
    Bluefrog76 Member Posts: 250

    Zula:

    You will find this forum to be incredibly valuable for answers and support. It is great that you are tolerating the treatment so well. Your picture is gorgeous! Wishing you the best with your scans. Please keep us posted. It is amazing the results people have experienced with THP. My 4 cm breast lesion was "undetectable" after 4 treatments.

    Niki:

    I hope today is easier for you. Once your mother's fractures start to heal, I think you will see a big difference. I had two spinal fractures and was mostly immobile over the summer but was diagnosed and had surgery in August and started treatment. In some ways, that feels like a lifetime ago. But now that I've "graduated" from taxotere and have had several Xgeva shots, I feel closer to normal. In the beginning, it definitely feels more like crisis mode, which is terrifying.

    Rachel

  • shutterbug73
    shutterbug73 Member Posts: 284

    Welcome Niki! I'm so sorry your mom is having a rough time. The first few months after a Stage IV diagnosis are very difficult emotionally and often physically. I too had radiation to my spine, and while in the long term it helped tremendously, in the short turn it made the pain worse. I had extensive bone mets and compression fractures in my spine which were beginning to cause spinal cord compression. Today I am nearly pain free only take Alieve for pain management.

    Welcome to you also Zula! I'm glad to hear you are mostly side-effect free. Fingers crossed for good scan results. Were you diagnosed Stage IV from the start (de novo)? I was and I have not yet had breast surgery, although it is being considered.

  • Nikisscared
    Nikisscared Member Posts: 18

    thank you for your replies! Shutterbug and Rachel, you give me hope. I'm afraid of how much time is left.

    Has anyone else had just HP and no taxotere? I'm afraid it won't be enough. I understand her fractures are still healing and her immobility is a factor but her cancer is her 2 positive!!

  • sueopp
    sueopp Member Posts: 238

    Nik, I have been on herceptin for years and years (the primo HER2+drug), together with other combos. When I progressed on herceptin and xeloda, he switched me to herceptin and perjeta and added navelbine in place of a taxol drug. I am also given zometa every 6 months. I know that there are some who began with herceptin, perjeta and taxol, and first the docs dropped the taxol, then even dropped the perjeta! The chemistry of cancer - geez ! Hope you and your mom are both doing better today. SUE

  • Bosco2602
    Bosco2602 Member Posts: 21

    Hi all

    I'm new to the boards.. I was diagnosed stage iv triple positive on November 11,2015 after I fell and broke my collarbone. I'm 38 years old with 3 young boys 9, 7 and 1. I was still breastfeeding my little when all this started to unravel. I'm devastated to say the least.

    I am at dana faber in Boston for treatment. Taxol every week and h,p z every 3 weeks. So far I am on my 3rd cycle and my breast tumor is 70% smaller then it was when all this started. My blood tumor markers are also already in the normal range which per my onc is great. Unfortunately I am still waiting for more bad news to hit me as the last 2 months have been a black cloud.

    I have read most of the posts on this thread and it makes so happy to see people years out with this diagnosis. I need to watch my babies grow up!

    Much love to everyone on here.

  • scrunchthecat
    scrunchthecat Member Posts: 138

    Hi there -

    I had my H&P today without any Benadryl. Has anyone else done this? My friend has been kind enough to drive me to and from treatments for six months, and I am trying to wean off his kindness now that I am off chemo and only on H&P. My oncologist has been reducing my dose of Benadryl, and today we decided to try going without. It was OK. We did Perjeta first, waited 30 minutes, and then I had them do the slow boat 90-minute Herceptin infusion. I felt a little ooky after the Perjeta, but then I felt better. When it was time to go. I was tried but not Benadryl drowsy. I think I could drive myself home (it's about 40 minutes away).

    Anyone else doing without pre-meds?

  • Ohmydarlin
    Ohmydarlin Member Posts: 43

    I have never had Benadryl with H & P (been on this combo since November 2013).

  • Teakie88
    Teakie88 Member Posts: 97

    Interesting. Every infusion I have ever had has been with Benadryl. There has never even been a discussion where I could opt out of taking Benadryl, as it absolutely makes me so drowsy after it is given. Might be something I readdress to my infusion nurses. Have a great weekend. Ann

  • Almosthere
    Almosthere Member Posts: 177

    Nope never had Benedryl, just dexamethasone while on taxotere.

  • sueopp
    sueopp Member Posts: 238

    Nope, I was never given any pre-meds before my H/P infusions (been on it for 1.5 years). I will add though that once or twice I was given IV fluids just because I was low, and noticed that side effects that cycle were greatly reduced - hmmmm. SUE

  • Bluefrog76
    Bluefrog76 Member Posts: 250

    I had my first H&P only last month. There was a miscommunication between the doctor and the nurse. I was supposed to have zero premeds. I was given Decadron, but refused Benadryl because I was driving myself. Next time I will have none.

  • toto06
    toto06 Member Posts: 47

    hi all,

    Have been reading through the posts and always take something positive from them so thank you.

    Finished my 9th taxotere on 29th September and had a scan on that date and all was stable. Have been on perjeta and herceptin since and feeling great. Side effects are cramping feet, legs and especially in my neck when I yawn, pain in both my arms (tolerable). Zometa every six weeks

    Had my ovaries removed in early November and all went well. Started on arimidex on the 30th of November and all seems to be going fine. Have some aches and stiffness which is all normal so I am told. Taking glucosamine chondroitin complex along with pharma nord d-pearls vitamin d3 daily.

    Next scan in February so hoping that all will continue to be stable.

    Haven't interacted with this thread but sincerely wish everyone well. Xxx

  • shutterbug73
    shutterbug73 Member Posts: 284

    Welcome Bosco! I'm glad the THP combo seems to be working well for you. I know what you mean about waiting for the other shoe to drop. I'm not sure that feeling ever really goes away, but it does get easier over time.

    Scrunch - I had Benadryl with my loading dose of THP, then steroids with normal dose of THP, but no pre-meds at all since dropping the Taxotere. Have you had a reaction in the past? Maybe that is why?

    Welcome Judo. I get the cramps, mostly in my feet and calves. Is the pain in your arms like cramping too? I've not heard of that as a SE, but many people have reported itchyarms. Do you have the Herceptin Drip (runny nose)?

  • Eleanor922
    Eleanor922 Member Posts: 6

    Hi Scrunchthecat! You should be able to drive yourself if you are on H & P only. My first time around 5 years ago I had Herceptin for a year after chemo was done with no more Benadryl and I drove myself. This time I have two more treatments of Taxotere and then will be on H & P only for a while and will drive myself. My husband drives me now while I am on chemo. I got wiped out from the Benadryl too. This next chemo they will not give me B. Good luck!

  • Beatmon
    Beatmon Member Posts: 617

    I have been on Herceptin and Perjeta only since last January. No steroid or Benadryl since dropping the taxotere then. I have had really weird cramping continue this year despite perfect lab. And of course Big D, runny nose and eyes. Poster girl for side effects. Slowed down infusion and seems better.

  • Zula73
    Zula73 Member Posts: 4

    Hi,

    Thak for you for your comment and the warm welcome!

    I did not get any big answers today unfortunately, as my new pictures are not done yet. I have a mamography tomorrow, and the ultra sound of my liver is not scheduled before the 1st of February. However, my doctor was very optimistic about the visual change in my left mama, and I hope that the liver is responding just as much on this H+P treatment.

    //Zula73


  • Zula73
    Zula73 Member Posts: 4

    Hi,

    Thank for you Bluefrog76 for your comment and the warm welcome!

    I did not get any big answers today unfortunately, as my new pictures are not done yet. I have a mamography tomorrow, and the ultra sound of my liver is not scheduled before the 1st of February. However, my doctor was very optimistic about the visual change in my left mama, and I hope that the liver is responding just as much on this H+P treatment.

    //Zula73


  • Zula73
    Zula73 Member Posts: 4

    Hi,

    Thank you Bluefrog76 and Moderators for your comment and warm welcome!

    I did not get any big answers today unfortunately, as my new pictures are not done yet. I have a mamography tomorrow, and the ultra sound of my liver is not scheduled before the 1st of February. However, my doctor was very optimistic about the visual change in my left mama, and I hope that the liver is responding just as much on this H+P treatment.

    //Zula73


  • josalive
    josalive Member Posts: 53

    Hello and happy new year everyone!

    I wanted to check in and let everyone know that I just got my results from my first set of scans since I stopped chemo 7 months ago and I continue to remain NED. I am excited about the results but feel totally run down from all the treatments (chemo, breast surgery, liver Rfa, radiation, and now h & p indefinitely). I have three very young kids at home so returning to work is actually a much needed break. I was wondering if people who have been on H&P for a while can share what side effects they are experiencing? I am fatigued, have low WBC, body aches, terrible rash on my arms, and in the last few weeks have started experiencingheadaches. The headaches are of course worrying me and I'm requesting a brain MRI ASAP even though I had a clean one last May. It seems any type of ailment causes terrible anxiety as I obsess about it being the cancer spreading. Anyone else experience headaches with H&P? I never used to be an anxious person and I think it might be time to seek out someone to talk to about all of my fear and anxiety. I thought things would calm down once I got through some of the more difficult treatment but it seems as though new hurdles keep presenting themselves... Sigh.

    I hope everyone is doing well. I know I am lucky to have had such good results with THP but it's been a difficult road. I know only you guys truly know what it's like and I really appreciate being able to reach out for support.

  • Nikisscared
    Nikisscared Member Posts: 18

    Hi everyone! I hope all is well with you all and good reports keep coming. Has anyone ever been given any type of prognosis with her 2 positive cancer? I Know the oncologist is a very optimistic person, but there is reality!!

    Much love to everyone.

  • mikarae
    mikarae Member Posts: 133

    Hello,

    I have been on Herceptin and Perjeta since March of 2014. To begin with I did 6 cycles of Taxotere along with the H/P. 22 months into treatment my side effects mainly are a runny nose, bone and muscle pain and constant fatigue. My eyebrows and eyelashes have all fallen out and grown back several times. My skin seems to be very thin and I cut very easily and my fingernails are very thin.

    Nikisscared - My prognosis was grim to begin with due to extensive bone mets and lymph node involvement but as I continue to do well my oncologist said I will be around a long time. I am NED (no evidence of disease) or I was NED several months ago when I was scanned. As we all know, this can change in an instant.

    Shutterbug - When is your appointment with the oncology GYN?

    Thinking of you all,

    Karen

  • pwilmarth
    pwilmarth Member Posts: 138

    Hi josalive - I'm 8 months out from taxotere, just H&P and haven't been troubled with anything other than a runny nose and not with each infusion. Only other thing I notice is constipation after the infusion - which seems to be due to the Zofran they give me before the infusion. Not really sure if I need the Zofran any more since I'm never nauseated. Going to try taking a stool softener and laxative tonight (infusion tomorrow) and for the next 7 days to get me through.

    I still have neuropathy in my fingers and toes. It's much better than it was 8 months ago, but I understand it can take year or more to resolve. It's not impacting the quality of my life though.

    I never had problems with my white count, even on taxotere.

    I agree that finding a place to go with fear and anxiety is a good thing, whether that's with a therapist or a spiritual advisor. I believe in a mind-body connection. Thankfully, I learned to develop a trust in a higher power before this all happened and I've learned how to cope with those things I can't control and learned to "let go and let God", There's a group of people in the long-term care industry that have developed some principles for dealing with fear and one of them is:

    The antidote to fear is knowledge. The more knowledge we have about our disease and our bodies, the better we will be able to cope with what is in front of us. I don't try to get all the information in big chunks, I take it in small bites. BCO has been helpful in providing me with answers in the chunks I can handle. But I also like the webinars on Living Beyond Breast Cancer. They've had some useful webcasts partnering breast cancer survivors with oncologists and social workers. One of the important things I've learned is to talk openly with your oncologist about your goals and hopes and dreams. That helps them tailor your treatment to your needs.

  • shutterbug73
    shutterbug73 Member Posts: 284

    Hi Karen - my next appointment is the 27th (next Wednesday).

    So glad to scroll through and see so much good news and optimism! :)


  • toto06
    toto06 Member Posts: 47

    hi girls,

    Shutterbug yes I also have the runny nose!! the pain in my arms is like a dead weight (pain above elbow and below elbow) some days it is worse then other days, my oncologist had not heard of that se before. The leg cramping is my worst side effect along with cramping in my neck (especially when I yawn). I am nearly 4 months out on just the h and p and have not experienced any headaches or other major se. I do experience fatigue but again it is not too bad. My oncologist said to me that the aches and pains in my joints especially in the morning (I have pain just turning in the bed!!) that is from my body adjusting to estrogen levels (ovaries removed last November) and not because of cancer!! All you girls know that every word spoken to us by our health care doctors/oncologists etc is analysed and gone over by us in our heads a million times, so when my oncologist said to me last June (first scan after diagnosis) that I was not even on her worry list, I wondered about that for some time!! I am honestly quietly confident that we will do well with the h and p and are very lucky to be in a position that these targeted therapies work. The day care oncology nurses have stated on a number of occasions that they see people with a similar diagnosis to me doing well and still attending for treatment many years on and some of those were only on herceptin.I am being scanned in February (last scan Sept 29th and all stable) and girls I know things are going to be good because I feel good. However, once this scan confirms stable or even better ned's I will not look back. 2016 is going to be a great year and I am going to live and laugh at every opportunity. Shutterbug every good wish to you for Wednesday 27th I'll be thinking of you!! Kind regards, to all. xx

  • txmom
    txmom Member Posts: 221

    Hi I am moving on from Taxotere, H&P to Tamoxifen H&P. I'm a little nervous. Has anyone had a good response with Tamoxifen? Thanks. Dan

  • pwilmarth
    pwilmarth Member Posts: 138

    With H&P, the protocol is so new and there's just not as much experience with it. I know that there is a history of using Herceptin with Tamoxifen. It seems a natural progression in the treatment of breast cancer to add Perjeta to the mix. The following is an update from Living Beyond Breast Cancer.

    HER2+ Hormone Receptor + Breast Cancer Update

    I think that early in the years of Herceptin, there was some controversy about the combined use of Herceptin with Tamoxifen, but it seems that there is benefit in combining the two. The best that I can tell is that it's a complicated topic. I'm not sure how the doctors determine if you would benefit from the combination, but it seems that you get a consistent profile of the side effects from the drugs.

  • Almosthere
    Almosthere Member Posts: 177

    Hello everyone!

    We are such amazing women! Love you all!

    Josalive: brain mets! I never even had a brain MRI. Now I'm worried. Should I ask for one? I'm such an osterage with my head in the sand. I have just had a breast MRI and a CT scan following 8 rounds of taxotere, H and P. I could easily get my results from my nurse navigator (my coworker, as I too am a nurse navigator for breast cancer patients...when I return to work) I just don't want to know..or does it matter? I see my MO on Monday.

    Who was NED after they dropped taxotere and who got there after awhile with HP?

    Josalive, you had liver RFA so you must have had some residual spots after taxotere...now you are NED! If I am NED then what treatment would be done to my liver if there are no spots left?

    Scrunchtnecat, what treatment, if any, did you have to your liver? You are now NED right? You were diagnosed just before me...

    My breast surgery is scheduled for Feb 2...

    I have been a nurse navigator for many years. I learned more when my mother went through breast cancer 2 years ago as a triple negative. I have really gained a deeper understanding as I walk through this myself (I think I would have been fine not to have had this learning experience though, haha).

    I will certainly add breastcancer.org to my my before and after surgery classes as a great place to get support

  • scrunchthecat
    scrunchthecat Member Posts: 138

    Hey bstein -

    I am technically just short of NED. There is "residual" activity in my breast tumor, according to my last PET-CT in October (my giant tumor is considerably smaller, and max SUV is 3.3 - 4 is the threshhold for cancer activity). The docs think H&P will clear it up. I had tumor markers done on Friday and am SO IMPATIENT waiting for the results! THP, by itself, seems to have wiped out the liver and lymph node activity. So be optimistic! We were both given what's called the Cleopatra Protocol, which was approved in 2014, and had a median Overall Survival of 5 years in clinical trials. Five years is a lifetime in cancer research. Me, personally, I am looking for a cancer vaccine trial. In our case, a cancer vaccine is to prevent recurrence.

  • sueopp
    sueopp Member Posts: 238

    Hello to everyone, so great to see so much good news on this thread - YIPPEE! Glad to know your appt date, Shutter. Will be sending as much good karma your way as I can conjure up. SUE

  • pwilmarth
    pwilmarth Member Posts: 138

    bstein - I was NED after my fourth dose of taxotere. We tried to complete the full course of 6 cycles of taxotere, but we stopped after five because of the neuropathy that I developed. Every scan has been clear since.

    From what I understand, if you have what is called a "Complete Therapeutic Response" prior to surgery, that's a good sign that you will do well on H&P after surgery. In metastatic disease, the thinking is that it's H&P for as long as it's working, which could be a very long time. Second line drug after H&P is TDM-1. There are many clinical trials out there expanding and developing new treatments for HER2+ disease. There's a great deal of discussion about "personalized medicine" which involves testing your cancer for its genetic profile and then creating a treatment plan based on what the genetic profile says will work for your specific cancer (for example, using a drug that's known to be effective for kidney cancer, because the genetic profile of your cancer says that it will work).

    As far as brain mets goes, there is much in the pipeline for its treatment. They are working on combinations of Herceptin or TDM-1 with drugs that they know cross the blood brain barrier. There's an array of radiation treatments that have proven to be effective. There are numerous clinical trials available. If you're concerned about brain mets, talk to your oncologist. This should be an open dialogue with your doctor because the best way to allay anxiety is knowledge.

    I've been listening to an array of breast cancer oncologists on Living Beyond Breast Cancer. There's a pretty clear consensus that those of us with HER2+ breast cancer will do the best because of targeted therapies - prior to Herceptin, we did the worst. I did hear one oncologist use the word "cure" even with brain mets because some of us will go many years with NED. Her opinion on this was based on the extent of metastasis prior to treatment with THP. The smaller the areas of metastasic disease, the more likely you will remain NED for a long time.