HERCEPTIN and/or PERJETA Threads
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I'm sorry to hear of your progression Pwilmarth. Best of luck with your new treatment plan. Feel free to bounce back in here now and then and let us know how you are doing.
Gramen - I agree with Scrunch. If your gut is telling you something different from what your doctor says, get a second opinion. Wishing you the best.
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Pwilmarth, I am really sorry that you have had progression. Fingers crossed that you get a good long run with TDM1.
Gramen, I would absolutely get a second opinion. It can't hurt.
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it's been quite some time since I've posted on the forum, but I check in with this thread several times a week. I'm uplifted by the stories of fellow women who are tossed about in the storm that is cancer. And I'm always amazed how different our treatments and bodies are!
I started with taxotere (stopped after three treatments), herceptin and perjeta. I had a large tumor on my left breast and three large tumors and multi-focal spots throughout my liver at diagnoses in March of 2014. Continued with h/p until May 2015 when i dropped perjeta. I had itching on my forearms that could not be resolved. And scars still on my arms where I scratched in my sleep. Worked with an allergist who determined that what I was experiencing was neuropathic itch. Perjeta was ramping up the neuropathy from taxotere so it was dropped. Itching resolved itself in two months.
June of 2015 I was considered for a clinical trial for sterotactic radiation for the three now smaller spots in the liver but after a PET and MRI I was bounced out of the trial because only two tumors remained and were too small! That was a great visit with the radiologist! He offered to have my case put before the tumor board but I took the chance to let herceptin continue to work it's magic.
Sept of 2016 my CT scan results for the first time mentioned no evidence of disease. Yowza. My oncologist is conservative in treatment and conservative in phrasing. She told me she dislikes the term NED. Mostly because it can be fleeting and doesn't stop treatment. That's alright, I danced a little jig to the tune of NED anyway.
One thing that I would love to have happen for HER2 women is the routine imaging of the brain. It is not currently standard of care (that I know of) and mostly not covered by insurance. Once a year since diagnoses I mention to my doctor that I am experiencing head aches. Boom. MRI of the brain. Maybe you all could look into this as well?
My best to all of us!
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On one of another posts it was mentioned that insurance decided that Perjeta was no longer needed. This person had at one time had sternal mets and a liver resection but evidently had reached NED.
Has there been a protocol published for how long Perjeta continues with Herceptin? How long is the record so far since it is fairly new drug?
Is the Perjeta dropped and Herceptin continued?
Once again I am amazed that insurance can dictate our medical care rather than our Physcians
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Pwilmarth What the heck???? NOOO. spot on the liver?? How large? What's the plan?? In the Brain? Where?Awww, can't take it. How are you dealing with it? TDM1 is supposed to be good. Dani tried it also. Do check in the brain mets and liver mets thread, I am there, and they are great ladies there as over here.
Pwillmarth you helped me and others so much, I wish you the strength to get through this and have great news soon.
Gramen sweetie, I answered you on the liver thread, beyond words, and yes, a 2nd opinion will for sure be wise, and DF that's great! Who will you be seeing there, could you tell us or pm? How are you??
OPINION! Guys not for pitty sake, but there has been a lot of stress emotionally about things going on w Dani. The short end is that she had progression and progression. Liver/Brain/Bones. So she was on Navelbine/Herceptin and then now Ixempra/Herceptin. BUT when I checked with the office on Thursd the day of the infusions(chemo is also every 3 wks and it coincided w H purposely), they did not have her down for Herceptin, doc was not in, I emailed her, and got an answer over this weekend that there was a TYPO and she WAS supposed to get it but did not!!! How upset should I get, if she takes it only on the 13th again, it throws her off the 3 wk deal. So what's best. Do it anyway, and then leave it like a 2 wk soon, and then she starts again on Nov. I would not want her to miss all these wks, just for them to start from scratch.
Dani is going to neuro onco tomorrow, after much going on between RO saying she will radiate and surgeon sayg surgery!! She already had Rads to the cerebellum, but another spot is in a very sensitive area. and many more throughout!
Beatmom, the person at my Dani's ins place, is sitting at her home w her dog by the side, she told me that the supposedly docs that will JUDGE what she is entitled to or not, are constantly rotating, they do that on purpose and are doing something else, just occasionally seeing "what the next case" is. Totally impersonal. Someone like Dani that is doing all she can to maintain her social life, takg care of the kids, home, and small business, they should look at the big picture, not just numbers. Just, quickly my mom was 96, and looked and felt better than 60yr ols, so go figure! There should be a Human face to it.
Hugs to all!!
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pwilmarth, I am sorry to read about progression in your body. Is there a plan for the brain met? There is a woman on another board I read, her2support.org who has written extensively about the treatment of her brain met. I would be happy to link you up. I only didn't because you might very well be inundated with materials to read already.
TDM1 has been very good to two friends of mine who experienced progression during treatment.
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momallthetime-
Herceptin can be dosed differently. I've had it given to me for s one week dose and then gone back the next week for a 3 week dose to get me on the right schedule. Ask your doctor to do something similar to get her back on trac
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Hawkeye – So happy to hear that discontinuing the Perjeta helped with your itching, and that your scans have been so good. It is interesting to see how many are dropping the Perjeta and doing fine on Herceptin alone. Your doctor sounds like mine, he is also very cautious with phrasing and seems to dislike the term NED, but I say celebrate it! So happy for you! (Where in ohio are you, if I might ask? I'm in SE Michigan, but was born and raised near Warren/Youngstown)
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Hi mom, it's good to hear from you. I've seen a few of your updates on Dani on the brain mets thread.
Just had a PET scan on October 3rd, showing two spots on the liver, and one on the hip - no idea of the size. Doctor called with results on the Thursday. I haven't had any real symptoms from these new spots.
The brain mets was found during the PET scan, and I was asymptomatic. They saw 3 spots. Went in for a STAT MRI yesterday and they confirmed the mets. The MRI confirmed that they are small spots that aren't disrupting the structure of my brain and not causing any swelling, which explains why I still feel well. I have a consult with the RO Friday and the MO feels I will only need 1 treatment for the spots to the brain and a very short course of steroids to manage the brain swelling.
After that, we will move to the next agent, which is typically T-DM1, but there's a theory floating around amongst the breast oncologists that you need a course of lapatinib in combination with capecitabine after treatment with Perjeta before starting T-DM1 - it has something to do with the pathways that lead to resistance to H&P and the lapatinib seems to break the resistance. So we will see what choices are made.
The new MO has been very responsive and quick to act. He feels that there is time to act on everything and this isn't a rush job to deal with the liver and the hip. And I'm feeling well.
I know that many of you worry about symptoms and wonder "Could it be brain mets?" My story is that I wasn't have any symptoms yet and, by following the routine schedule for my PET Scans, we found these spots early. The short course for Cyber Knife treatment means that we'll zap these things out and now I will have more scans of the brain to maintain control. I just read about a woman who has had 33 treatments to the brain with Cyberknife treatments and during that time she went from extensive liver and bone mets to NED in the rest of her body.
I continue to think of this as a long-term illness with many bumps along the road. I'm taking it one day at a time and enjoying each day. And keeping all of you in my thoughts and prayers. Remember that the antidote to fear is knowledge, and the more we understand about our disease, the better we will cope with it.
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Hello, I am posting on behalf of my mother and was advised that this was allowed as it is a specific question but if not please do let me know.
Hi there I am new to this and am hoping to find some advice or experience that would relate to my mother's diagnosis.
Mum (now aged 66) was diagnosed with Stage 3 HER2+ breast cancer in 2012, she had a mastectomy, chemo (Taxotere/Docetaxel), radiation therapy and Herceptin, and she has appeared to be cancer free until now. This week she has been diagnosed with metastatic cancer in the lungs, she is breathless and has lost her voice. She is going to have the fluid drained and then the oncologist has advised that the usual treatment would be another 6 rounds of the chemo (Taxotere/Docetaxel) and then Herceptin every 3 weeks for as long as she is alive, possibly in combination with Perjeta - though we live in New Zealand and that drug is currently not funded here.
My question is about the chemo drug Taxotere (Docetaxel). When she underwent the chemo therapy in 2012, the Taxotere had a profound affect on her short term memory - causing severe "chemo brain" (she can go and see a movie and if you ask her on leaving the cinema what it was about she may struggle to tell you), and it has never really improved since that time. I am concerned that if she has to undergo another round of this drug it will cause even more brain problems, leaving her unable to appreciate or enjoy the time that she has left.
Has anyone decided to fight against a metastatic cancer using JUST Herceptin and/or Perjeta and NOT done the chemo drug? If so what has been the experience/success? Or does anyone know anything about the Taxotere (Docetaxel) causing these memory issues and if there is an alternative chemo drug that they believe is better? Any insights much appreciate
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Taxotere works differently than Herceptin and Perjeta. Taxotere is true chemotherapy meant to kill fast-growing and dividing cells regardless if they are normal or cancer. It's like taking a sledgehammer to the body and killing the good with the bad. Which makes it great for eliminating the cells that are causing cancer. But it does cause many side effects including chemo-brain. I had chemo brain when I was on Taxotere and my thinking was quite clouded during that time. However, my brain cleared up after we stopped the Taxotere.
The Herceptin and Perjeta only attack cancer cells and therefore has less effect on the brain. They don't think that H&P crosses the blood brain barrier unless you develop brain metastasis, which seems to open a pathway for the brain to soak up the H&P.
Since my experience with chemo brain was temporary, I would not choose to undergo treatment without the chemo portion, But using chemotherapy drugs is a complicated matter. Sometimes what some of us think of as chemo-brain is actually a form of neuropathy, and the brain is composed of nerve cells.
This is really a quality of life issue. What I can tell you is that I don't feel like the quality of my life has worsened because of chemo-brian. In fact, the side effects of cancer treatment caused me to think about the choices I make and how I want to live my life. I eliminated a lot of things that were causing me unnecessary stress, including my job. So I'm a much more joyful and happy person today.
Over the weekend, the head coach for the Denver Broncos made a trip to the Emergency Room for "flu-like" symptoms. In 2013, during the middle of a game, he was taken to the Emergency Room for what were symptoms of a stroke, He's only in 50's. They determined that he had a "mini-stroke". He didn't coach another game that season, took a less stressful job in 2014.
Then he became the head coach of the Broncos last year, leading his team to a Super Bowl win.
When he developed those symptoms this Sunday, there was deep concern that he was headed for a stroke. It turned out to complex migraines.
Having watched this man during his career, he is very passionate about his job. He gets joy and pleasure and meaning in his life with the career that he has chosen. Because of his history, he could easily end up with the debilitating effects of a stroke. But you would have to ask him if he has done everything he has wanted to do to live a satisfying life. I think the answer is yes.
My answer to your question is: How does your mother feel about this? She may be getting more joy and pleasure out of her life than you know. And if she isn't, she will tell you.
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Shutterbug, I was born and raised in Northwest Ohio and now live in central Ohio, northwest of Columbus. I'm more familiar with Cleveland and the surrounding area and have a sister near Wooster. Next time I see the highway sign for Youngstown I'll say hello for ya!
Pwilarth, I like how your MO acts/thinks. Similar to my oncologist. She's forever telling me this is a long haul. You sound grounded in your plan.
Jen878, any chance they are considering a biopsy of the lung? Also, the question of taxotere would be a good one for her doc. There are other chemo drugs in the cupboard but I don't know what the thinking is for mets after 4 years. Did she do herceptin for longer than a year? I'm guessing that at stage 3 at diagnoses she did one year. With her past history of taxotere, perhaps they would consider an alternative. You asked if anyone with mets only did herceptin/perjeta and I don't know anyone who has. Hindsight being what it is, I wish I had skipped the taxotere. But who knows, even with just three doses it may have something to do with why I'm Ned now. I wish you good luck going forward
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Thanks Pwilarth for your thoughts - I will talk to mum about her quality of life.
Hawkeye I will definitely talk with her oncologist about the taxotere, I was just hoping to find out if anyone had any direct experience of this decision. She did Herceptin for 6 months last time. May I ask why you ask if they are considering a biopsy of the lung?
Many thanks for taking the time to try to respond to my questions.
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Hi all. I haven't spent the time to write out all my diagnoses, but suffice it to say I had bone mets 8 years ago...was clean for all that time on Arimidex and recently dx'd with liver mets (on a routine scan). I am still in disbelief. Life was getting so back to normal. Anyway, just started on Taxotere, H and P. First dose was Monday. Yesterday and today feeling crappy. (tired, GI distress, achy). Tell me what your experiences are in the 2nd and 3rd week between doses. Does it get easier before they slam you again? I hope so. Just want to feel normal again.
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Taxotere was pretty rough for me the second time around (I had had it with early stage Dx and worked through it) and I was only able to get through four cycles. We switched to weekly Taxol and it was infinitely easier to do but the commitment of time was an issue but I stuck it out and got to NEAD after four months. I can't speak to whether or not will get easier because we each handle things differently. I hope it doesn't get more difficult for you and that you get to NEAD too. EIGHT years with bone mets! That makes me super hopeful. Were your bone mets HER2+++? I really hope you begin to feel a bit better.
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jen878, I asked about testing or doing a biopsy of the lung so that the best/correct treatment can be used. It's not often I don't thnk but can certainly happen that cancer can change types. Like changing from all HER2 to maybe HER2 and estrogen positive, as an example.
Kaufman...dang! Really sorry about doing the taxotere. There are a few women here who had hardly any troubles. I'm more like MaineRott...in that I personally lasted just 3 out of the proposed 6-8. The third one was my undoing! Ha. My sister just finished her 8th taxotere in June. I'm pretty sure she worked full time during all of her chemo. A day off here and there.
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Thanks for responding, MaineRottweilers! Thanks for your encouragement, too. No, the bone mets were only minimally estrogen positive. But my recurrence in the liver is HER+ and ER+. It's so screwy. Sometimes I don't even believe the cytology. But what choice do I have?
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Hi, Hawkeye! Thanks for responding. I am feeling a tad better today, but all kinds of weird aches and pains. Is it the Neulasta? Is it the Taxotere? What is it? Does it matter? Questions to the universe. Anyway, I am hoping that my MO cuts the length of treatment, too. But of course, it's too early in the game to ask for that. I am glad you are just on the H/P now. I am looking forward to that day. I am also so bummed to hear that your sister has BC as well. Do you have the BRCA gene? I hope you are both healing.
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First, just to let you know, it turns out Dani had to have the full dose of Herceptin, so it was full hour. They totally misunderstood an order on paper. i would like to see more checks and balances, but there was so much going on at that visit, Xeloda was added bcs of Dani being much more symptomatic about her whole body, more mets to the brain and liver, I just had no energy to tell them how to run things efficiently and make sure, people are getting all their meds. She is now taking Xeloda, Ixempra/Herceptin. I did ask Onco about Perjeta? She is totally unimpressed by it. (D had it in the past, but then was taken off it)
kaufman so sorry for the mets, as someone else said in these threads, every time is like hearing it the first time, it never sounds better. Did you have a biopsy of the liver? Onco is so against it in Dani's case. I think she's scared to do it on Dani, she has innumerable lesions. Question? If you have just few, would rads not be a consideration? The liver, i believe it's only felt once it is really at the end stage, so you would not really feel it. Maybe some pain on the right shoulder sometimes, etc... good for you they found it.
Pwillm and you? Rads? Dani at first had not symptoms, not in the brain, not in the liver.
Jen sorry about your Mom, if you could deal with the small things, who knows, maybe in the long run it might be worth it, it's a hard call. Good luck.
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Kaufmanscsi,
So sorry to hear that your liver was recently diagnosed, a big shock to the system when you think everything is going so well. My treatment plan originally incorporated 8 taxoteres but I received 9 because I was taking it so well but as some of the other ladies have already said, it completely depends on how one's own body reacts as everyone is unique. After a taxotere infusion, I was usually not great for first week (tired and a bit nauseous), second week I was getting there! and by third week felt fine!! Hope that makes sense.
Hawkeye, sorry to hear about your sister, that can't be easy for the family. Goes to show that taxotere tolerance is completely individual with your sister handling 8 and working away and you managing 3 doses.
Kind Regards to all. x
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Pwilmarth, I'm shocked with the unexpected progression. If it can happen to you it can happen to us. That is the reality of this disease. I keep hoping to be that lucky one that gets 20 years or forever! I wonder if I'll get to spend my pension or the RRSP my husband and I struggled to save and put away. Will he come into my huge life insurance policy and meet someone else. I keep thinking that this wasn't how I imagined my life to be or end. It sure isn't easy but we get up each day and take what comes. Being a healthcare professional with 20 years breast cancer experience I thought meh, I'll never get breast cancer and if I do I'll catch it early. Nope all the screening in the world didn't prevent this. I'm struggling a bit today, so sad, scared and having a harder time pushing it down.
A gentle hug to you Pwilmarth
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bstein - I thought the same thing. I even had a breast surgeon doing my yearly breast exams. Mammograms every 6-12 months. I had the mistaken notion that cancer grew slowly enough to be caught with regular surveillance. Boy was I wrong!
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Bstein Thank you for your kind words of encouragement. I know how you feel about being a healtchcare professional. Met with RO and we talked about when this happens to one of us. We want to live in denial, but we can't.
We caught the progression early and I just finished the fourth treatment for the Brain Mets. I started noticing symptoms after the PET scan and MRI. Odd areas of numbness and tingling, and the RO talked about feeling like your head is under water. After the fourth treatment, all of that is resolving. I think I'm going to start telling everyone that I went in to have a procedure to clear the cobble webs out of my brain. When you think about the elderly who develop Alzheimers and Dementia, they don't have a procedure that clears up the debris that accumulates in your brain. So I feel like I just got a tuneup.
Then it's back to the MO in November and we will see which one of these treatments they are going to try. But the breast oncologists talk about women doing well on T-DM1 for years so we're far from the end of the journey.
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Hi all just wanted to introduce myself, I am newly dx'd stage IV with brain met in july. Had craniotomy in august and whole brain radiation in September.
I am currently NED below the head but will be starting a new combo to stay that way. Will be doing Herceptin/Perjeta/Taxol and hopefully dropping the chemo when I have scans in approx 3 months. My government does not allow Herceptin/Perjeta to be given without a chemo first. I am interested in any helpful hints you might have regarding the big D which appears to be common. I am thinking a probiotic and lots of water, but anything else you can think of I would welcome.
Herceptin was never a problem for me, did not have any perceived side effects other than being a bit tired and achy joints. Hoping I follow that with the Perjeta but any info would be great. I will start week of Nov 15.
Looking forward to hearing from everyone.
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Hello and welcome mara51506.
Lots of great information and people on this site.
Every three weeks I have Herceptin and Perjeta infusions. My largest complaint is muscle pain. I guess a small price to pay for a much larger gain.
I am Canadian as well. From BC.
Karen
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Thanks Karen. I am not too concerned though I wish I could have just started with the H&P since I am NED. My onc let me know OHIP would not cover that, have to attach a chemo to start. That's OK, she said is half the dose of Taxol I got before and she will drop as soon as possible for me. She's an awesome onc. I will try a probiotic, keep up on my water and exercise. I will probably have some taste issues, I did before on the Taxol but I know it will be shortlived too. No side effects for Herceptin after 18 infusions of that. Bit tired and sore joints. I will also load up on some immodium anyway to be on the safe side. I like to be prepared whether it is the big D or the big C.
I look forward to my treatment plan and hope it will keep my body NED. Easier just to worry about mets in one place versus multi organs. My brain appears to be OK for now. Next scan for that will be december. I like being a rare person who does not have mets anywhere but in the brain. Hopefully my surgery and radiation will be enough to give me some peace for a while from the brain stuff. One can hope.
Pwilmarth, you are absolutely spot on about clearing of the "cobwebs" when brain symptoms are taken care of. Best of luck to you. Sorry about your progression. I am given to understand that Kadcyla definitely can knock mets for a loop. Hope you get many years out of it.
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Bstein it's so true about being vigilant and still being hit hard. And your feelings about your DH are so real. I am sure it crosses the mind from most people. Don't even get me started when I think about the little ones etc…I gotta take pills to sleep, because the nights are the worst and the moment I am awake, my mind goes to places I cannot handle. All I could offer you is a warm hug.
Onco changed the tx for Herceptin every 2ks, something about the blood count, I was not there so I can't say why really they would change from every 3 wks to 2 wks. The duration of the infusion is about an hour. Is that too fast. I wonder.
Mara we'll get tired of each other. Hope that combo kicks in real fast.
pwillmarth how are you now? It makes me so mad when I think how cautious they have been with D's brain mets, she has more than 30 lesions in the skull, I get that, so their take was, we cannot do them all, let's do nothing, wait for systemic to work, but nothing did. So these things just kept growing, finally they are radiating 3 biggies, she has no major symptoms, but does feel oddities and some pain all over, now she has facial pain, so we gotta deal with that. The hope is that finally this new combo with Xeloda will do something.
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Just wondering if anyone has heard from Teakie88 (Ann) recently? She started this lovely thread, and I see she hasn't checked in since May. I hope she is just enjoying the summer and taking a breakfrom us for a bit.
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Hi All -- I went for my 12th herceptin infusion today. For the first time there was trouble with my port. The nurses were able to flush the port but not able to get any blood. They gave me a TPA (something to dissolve any buildup as I understand it. Then I was given a some type of scan with contrast to ensure the port was still and place and there were no leaks. There was some concer that the bilateral mammogram I had yesterday played a role in the issue. I was wonderinfd if anyone ele has experienced a simolar issue.
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mltdd - the same thing happened to me a couple of years ago. I had the contrast study done and I I was told it was fine. I have not had a blood return since. The nurse always asks me if I can taste it when she flushes it. I always can. I have not had any problems with it, even though I don't get a return. My onc. Is ok with this. I know they have a couple of other patients that don't get a return also. Wishing you the best.
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