HERCEPTIN and/or PERJETA Threads
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momallthetime - There's some really interesting older studies out there on ER+/HER2+ breast cancer. These were studies looking at the use of tamoxifen with Herceptin. It seems that at the DNA level, there's some cross-talk that goes on. These older studies indicated that tamoxifen could reactivate HER2 and overcome resistance to Herceptin. Meaning that Herceptin becomes effective again.If you go to the Pfizer website, you can see that there is quite a bit of interest in the use of Ibrance with Herceptin/Perjeta. Ibrance is such a new drug. How it works with the cross talk isn't clear. There may have been some animal studies done on this which we don't know about. But it sounds like your oncologist has done his research.
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I've been thinking about the statement "Very few people become NED". There's a good scientific rationale behind this statement.
The HER2 gene represents a pathway. HER1-->HER2-->HER3-->HER4. Targeted therapy interrupts the pathway at HER2. Which means that cells that have already advanced beyond HER2 are not affected by drugs designed to stop the pathway at HER2. However, if you stop the majority of cancer cells from progressing beyond HER2, you can control the progression of HER2+ breast cancer. New cells die before they reach HER3 and those that do reach HER3 eventually die a natural death as their life cycle expires.
Doctors like to use the word "subclinical" for a variety of conditions. Which means that the disease is present but not at a sufficient level to make you sick or symptomatic. That's what oncologists are thinking when they say "Very few people are NED. " There's always some cancer cells present. But they aren't present in a significant amount and the idea is to stop the progression from HER2 to HER3.
It's also the basis for immunotherapy in cancer treatment. The idea is to teach your immune system to recognize and destroy cancer cells before they become clinically significant. Our immune system actually knows how to do this, but there's a gateway that gets turned off in cancer. This causes the immune system to recognize the cancer cells as "US". In normal infections, bacteria and viruses are recognized as "THEM". Researchers have started to understand how to inactivate that gateway, which has led to the development of new treatments, including vaccines.
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subclinical - that explains a lot, pwilmarth. I am also still mulling over the "Very few people become NED" comment, and my reaction to the Living Beyond Breast Cancer conference as a whole. I just - it just seemed so wrong-headed to me. I am going to publish more about that here, but I am super busy and I am still thinking about it.
Ladies - there is a secret FB Group for women with Stage IV HER2+ that I started with agness. Because it is secret, you can't find it by doing a search on FB. I must add you via e-mail. If you are interested in being part of this group, please send me a PM with your e-mail address and I will add you. A few of you have joined, and I know that I am still trying to figure out how to add at least one person, but I will do my best. I was interested in starting this group as a place to discuss Stage IV HER2+ issues beyond H&P.
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Here are the HER2+ materials from the LBBC goodie bag. There were about 400 people at the conference, and I only met two other HER2+ folks - both were triple-positive. (Hi Bluefrog!) There were no trials in the bag for TN or ER+ folks.
* HERMIONE TRIAL - MM-302 is one of those lipid-encapsulated chemos (doxorubicin) that are released only when in contact with HER2+ cells. https://clinicaltrials.gov/ct2/show/NCT02213744
* SOPHIA TRIAL - https://clinicaltrials.gov/ct2/show/NCT02492711 This is the Margetuximab trial. They are testing the effectiveness of Margetuximab vs. Herceptin.
* There was an advertisement for the Genentech 4HER app. I downloaded this, but was not impressed.
* BROCADE3 - http://www.brocade3study.com/ This is a trial for people with the BRCA1 and BRCA2 mutation.Margetuximab (Marge Simpson!) and MM-302 could be additional lines of defense after Kadcyla and TDM-1.
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scrunch,there's a lot of interest in developing new therapies for those HER2+ cancers that are resistant to or become resistant to Herceptin. I recently read the following at American Journal of Hematology / Oncology:
More than 12 different HER2 mutations have been described, and identification and targeting of those mutations may prove to be beneficial in the treatment of this disease.
This is even more intriguing:
Subtypes of HER2-positive breast cancer with varying sensitivities identified
So our disease is complicated and no two women with HER2+ breast cancer will have the same course. It's all about the DNA.
I forgot that my MO asked about me about a clinical trial last year .I've been enrolled in an observational study sponsored by Genentech since last year. It's called The SystHERs registry. They are collecting information about the long term survival of women receiving H&P, as well as collecting data on quality of life measures. I answer a questionnaire every 3 months. They took a tissue sample of my tumor last year and drew some blood for DNA testing. This week, they re-consented me to the study because they made some minor changes to the study. It's a long-term study - 8 years.
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Thanks, PWILmarth! I'm going to look into SystHERs. Not sure if I qualify since I was diagnosed 9 months ago, but I would love to participate.
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Momallthetime - there's recent reports that Luminal B cancers that are resistant to Herceptin are sensitive to H&P.
HER2 Subtype Offers Clues for Individualizing Breast Cancer Care
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Guys thank you so much for your sensitivity and help in this issue. Your writing is superb
Meanwhile, the last 24 hrs were scary, Dani has tingling and numbness on partial side of the face. WTH right?? PCP and Onco don't wanna panic, she did have 10 days ago MRI of the brain, yes, of course it showed extensive mets (not in the brain) but the skull, but nothing that would guide them to this. So we'll wait for tom ( a long night it is), and mabe it was just a spasm and it will move one, or we'll have to do more detailed checking (MRI).
Scrunch – my 2 cents is that I know that you still TDM1 or TDM1 with Perjeta, you would still skip these and go for the vaccine or trial first? Unfortunately for Dani it did not work. Another very strange status, not only it did not help, she had much progression while on all the so called target therapies. It really left the ex Onco scratching their heads.
Pwilmarth she is definitely Luminal B, either you look at it. Before the confirmation of HER2 status, was high KI67.
Regarding the Tamoxifen, she took tamoxifen before mets, and w Tamoxifen she got to Mets. So…
Did not get the Herceptin/Perjeta yet, because of some snafu between the Ins and docs office. They need the doctor to actually write for an authorization, Fridays the docs office is closed (it's a weekday no??), and when we call the Ins they say they waiting for the doc, when we spk to the office they say it's the ins. Nice. Meanwhile Dani started on the 4th cycle of Ibrance/Letrozole, and we can only hope that this gets taken care of sooner than later. I do have a choice of "words" but I gotta hold back!!! You know, it's not an emergency for them!
Years ago a surgeon told me, it's minor surgery for him and major surgery for me. Like with this meds order, they are not nervous about time. I bookmarked all the wonderful ideas you guys forwarded to me. Thank you sooooo much. It's extremely helpful. Just those few days I learned so much.
Also attached is a link I got from the Ibrance thread
http://livestream.com/lbbc/metsconf2016it's all very interesting but of interest to Heceptin…is the 3rd video. She is terrific.
Scrunchthecat I wonder if you heard of Dr Anders when you were there?
Hope you have a great night, check on you tomorrow and really thank you again
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Hi Momallthetime,
I'm sorry to hear about Dani's progression. You said that she had mets in her skull but not in her brain? Did the doctors say whether this was leptomeningeal disease? That's when the cancer spreads to the lining of the brain, not the brain itself. There's a member of BCO named agness who has been very effectively dealing with HER2+ leptomeningeal disease. If that's what it is, I would search her name and see what she says.
My plan is to do the vaccine trial before the next line of treatment, yes. Although, depending on what "progression" looks like, I would probably ask my onc to do a biopsy of any new lesions to see if they were still HER2+. I did see Dr. Anders' Keynote presentation, and the presentation she made with one of her colleagues from UNC on brain mets. She's a great speaker, I am glad you learned from her, but for me, personally, she did not say anything new. I was surprised that she spent about half the time discussing HER2+ therapies, when my personal (but limited) poll of the attendees indicated that very few of us were HER2+. So I remain disappointed, and I have written the organizers to recommend they cover immunotherapies (there are several different categories, and there are a few that FDA-approved for other cancers but may work for breast cancer), financial planning, participating in clinical trials, HER2+ and TN treatments and more.
Best of luck - let us know how things go.
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momallthetime - sorry to hear about the progression. Keeping your daughter in my thoughts and prayers.
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MRI done today, so far they did not see anything that would explain her symptoms. Tomorrow they will look at it in more details.
She started Herceptin today.
GN everyone, God bless all of you for your support.
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Hi, I've been on Tamoxifen, H&P since Jan. My stomach is still bubbly and my bum still hurts. Does anyone else experience this? What do you use? TIA
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My oncologist recommended a 50/50 mixture of cortisone and lomotil (athletes foot med) over the counter creams. Sounds crazy I know but I was desperate enough to try it and it worked on my sore bum!! I use it on my feet/hands too when they get that yucky cracking. For the bubbly tummy the only thing that worked for me was warm Coke. It caused me to burp like crazy thus relieving the pressure. Good luck
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Had a follow up MUGA scan. My left ventricular ejection fraction is at 49% compared to 79% in December prior to the 5 herceptin treatments. MO wants me to see a cardiologist. Anyone have experience with this? I'm wondering if this happened after 5 treatments what will happen if I continue for a full year?? I'm 37 and am worried about having heart problems the rest of my life.
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I had a similar experience. Was taken off herceptin and put on heart medication. My heart function returned to normal after about a year. Some bounce back sooner. Mine was probably a little slower due to the Adriamyocin I had been on previously. I was 38 at the time.
I was put back in herceptin years later and made it about 9 months before the same thing happened again. So I'm off herceptin indefinitely.
I would say that your heart wil most likely rebound and that there are other treatments out theref for Her2+. I know it's a blow butt here is hope.,
Hang in there
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Hey TXmom fancy seeing you here. Hope you could feel better with the tummy.Sorry.
mld So sorry you are having a rough time at it, it's so scary when they take you off something you know it's good, we went through this a whole last year. All the tx were shown to work on the biopsy report but it did not translate in real life. My daughter was so disheartened, whenever I told her oh, but we have the new tx for HER2 she was like, yes, sure like the last one, and it did not work. But they are coming up with new tx real quick for Her2+ so this is real good, I wonder what doc is planning for you.
Pwillmarth regarding the link for H/P now I am a bit concerned. Because doc said that Insurance does not wanna cover Perjeta bcs she was on it already (yes and it did not help at the time). But they did ok Herceptin, which she took one dose already.I wonder if he should have tried harder, I am very annoyed with the office for not getting the paperwork done in time with prescriptions etc...and it seems from talking with the Ins that they reached out to the office and were not getting the right paper work better such as explanations of why Doc would think this is a helpful tx etc...So I am thinking did they screw up something or it makes sense that they would ok Herceptin and not Perjeta??
The idea is to take Ibrance/Letrozole and he was gonna add H/P due to the new lesions and then I thought it all made sense bcs of what you guys showed me all those links and talks saying how Her2 could come in different ways or pathways.The article in Onclive saying how really H/P together is the ticked, and now that she would only have Herceptin, is it going to have a good effect or are we wasting time?? Also, he wants to add Lapatinib(Tykerb) have you guys heard about it? On her F1 and Gardant assays it showed she has amplification that Tykerb would work, (it also showed that H/P and TDM1 would work, BUT IT DID NOT) But now he will be adding the Ibrance/Letrozole so he says there is another punch.
What is your input, everyone?
Thanks so much,
p.s. she still has the numbing on one side of her face, it got a drop better, and the MRI did not show pressure of lesions on nerves in the skull, so we will give it a few more days till I start freaking out!
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Get them to reduce your dose, or take a chemo vacation.
I use avonec cream on my bum, and also suppositories when bum chapped.
I use unscented babywipes after really high class t p.
buy the babywipes by the case...use always.
I also use Trader Joe's korean aloe..helps with whole GI tract. use sparingly...I refrigerste mine.
Slippery elm also helps stomach and bum..it is all one long tube.
Cut back on dairy except yogurt, use a good 10strain probiotic, cut back on wheat, corn, milk,sugar..eat oatmeal, use almond and coconut beverage...
Good luck! Everyone's body is different..
( Been on Herceptin/Perjeta one year since Jan 15...was on Pacetacil as well Jan-Mar.)
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Newbie 20111 needs some help...EKG/ECHO leads caused rash...maybe latex allergy...
Last week I had my regular reduced dose Perjeta/Herceptin infusion. ( Get Benydryl IV as well. ) No problems.
This afternoon I had my routine ( every 4months ) ECHO. Been having one since Jan 2015 no problems, ever. Same tech, same facility,etc. Different machine...maybe different EEG leads..the big flat white ones.
I now have open red circles exactly where leads were placed.
The one closest to my port #2 ( where they tape over my port during treatment every three weeks for my infusion) is the worst. (Last week it was momentarily red after they took the infusion tape off last week but went away.) Rash is not on my port but above it.
(Today I checked with the ECHO tech and had them add the sensitivity to my chart, and checked with a local pharmacy for benedryl cream, etc.). Red spots went away, then came back later tonight.
Just took some topical Benydryl and a small amount of oral Benydryl hoping this would lessen the welts.
Any suggestions in the short run? Will check with my onco tomorrow.
( My last BC was intradermal etc.but not on my port side. This is my non-cancer side...the good side.)
Regards,
Noreen
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Have two METS friends on Ibrance combo and doing well except for neutropenia.
( One was on the dlinical trial before it was approved) . She has great hair! Feels good. )
Good luck!
Newbie20111
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Well Newbie you are doing everything right to reduce the allergic reaction. BC would not respond to Benedryl so you shouldn't worry about that. Hugs to you
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momallthetime. I would keep pushing the insurance company. You can also go to the Genentech website for help.They offer financial assistance for H&P
Insurance companies are the biggest obstacles to personalized medicine because they only want to cover "standard of care". But the way that cancer treatment is going, personalized medicine will become the standard of care.
You always have the right to appeal your insurance company's decisions. You might do some research online - there are some organizations that also offer financial assistance with some of these meds.
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pwilmarth I am so upset now, I only checked in tonight, and you are right about appealing, and I let it go, and she started Herceptin with Tykerb now, and now I feel I missed an opportunity. Also, Perjeta and TDM1 together have a good success rate. When she was on TDM1 after Herceptin/Perjeta/Abraxane did not work for her, I begged the ex Onco to put her on TDM1 with Perjeta and she refused. So she was on TDM1 by itself, and that did no good. I am so frustrated. Thanks so much.
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momallthetime - Sorry to hear about the frustrations you're having with the insurance companies. You are doing everything you can to advocate for your daughter. I don't know how the appeals process works with your insurance carrier. Some have a deadline, but I don't know what yours is.
This is a documentation game - and it's sad. Your daughter doesn't need to be put through this. Keep trying with the pharmaceutical companies and keep appealing if you can. The OncLive article is some of the evidence you need to support the use of the agents you are talking about. And ask your oncologist about any clinical trials available to your daughter. These trials are primarily funded by the pharmaceutical companies and they pay for all the study drugs.
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Oh let's just say 4 pages of frustration. I put down just about all the details dating back a few months of issues with the office not following up in a timely manner for her meds and miscommunication issues.
Thx pwilmarth!
Do you guys take Protonix as a matter of fact? or only when needed? What about Neupogen? Only when the numbers drop very low? Last yr when she was on Herc/Perj she was taking Neupogen like 3x wkly all along. So far now he did not tell her to take. He is afraid of too much Neupogen.
Do the Onco's office always have the meds on time? Here we almost missed the ordering of Herceptin for the next bach, bcs office did not realize was time to order. Hmmm who is responsible? They seem to be lazy to deal with Insurance, but the person that needs the drugs should not have to suffer due to this. Long Convo with Onco tomorrow, i could tell you that.
Also, did I mention, that I reread the path report and I see PR<1 (weak), could it just be a fluke ER+ and HER2+++ strong. Does the PR have an effect, that's the question. Someone in another thread told me maybe it's a mistake on the reading at the time...
TIA! GN
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Momallthetime:
I haven't used Protonix or Pepcid for over a year and have never had issues with my white count it was always normal or high.
Regarding the path report - there's a lot going on with those things. Initially, they may show one type of cancer, after treatment things may be different and that's because of stem cells. The stem cells are precursor cells that morph into specialized cells. And that's another area that's being studied - with new drugs aimed at blocking stem cells from becoming cancer. The theory about treatment for cancer just gets more complex with every new discovery.
I've never had any issues with getting the drugs but I am familiar with the prior authorization process and that's a tricky issue. That's an issue with the doctors office. They should be submitting the paperwork in a timely manner so the drugs are available.
The only time there was an issue was when the pharmacy at my infusion center ran out of Herceptin, but they were able to solve it by sending a courier to another infusion center in town to pick some up. We ran the Perjeta first, did my observation and by the time we got through with this, the Herceptin was available.
Just keep being the Squeaky Wheel. With the health care system it does work
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Pwillm oh squeaky wheel I was. We actually went in with all copies of emails with requests of Status of the orders, anyway Doc was so upset, he called over the Head manager of the office, they WANNA hire me!! They were so impressed how I know so many in and out from the whole process (which I have learned a lot over here), they are definitely considering it. I would jump at the idea, but I need to devote my time to Dani and also she never knows when she needs to go in for something, and I need to be available either for her or the kids. So, I gave up my old job, i cannot commit now. But I did tell him, that heads would have to roll, hmm, he cannot actually do that. We did get the direct # for the Office Head, and will deal with her only for now. They are really messed up with authorizations. Unexcusable.
But when you say they ran out of Herceptin, they must have used your Herceptin for someone else, no? Do you know what dosage you take of Herceptin? Also, I noticed last year when she was on it in a major Cancer Center, they were giving her Neupogen as a matter of fact, I know you said your counts were pretty good, but do you think they do it there also?
Thanks so much for all your advise, PRICELESS!!
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hi ladies
Hope you are all doing well and treatment is being kind. I have a question, I met with my Onc yesterday it was my last taxol of 24 and now I'm only on h&p. Well with tamoxifen and lupron shots. Whats getting at me is that she said she hopes to get a year out of herception?!? I was thinking more like 3-5. Is that normal is she just covering her ass with stating 1 year? She is very knowledgeable and I like her a lot. But hoping for 1 year threw me. Can anyone let me know if one year is the norm in h&p ?
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Hi Bosco - Wow, what an insensitive thing for her to say! My oncologist says they have no way of knowing who will respond best to H&P and many women get many years in this regimine. I've only been on H&P, Tamoxifen and Xgeva for 17 months but I know there are many women on these boards who have been it much much longer. I understand not wanting to give us false hope, but her comment was wayoff the mark in my opinion! Wishing you the best with the new protocol!
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Bosco - Not sure why your onc would say that. If you read the study that got Perjeta approved, the median time to progression on H&P was 18 months and the median survival was over 4 years, which was a huge improvement from any other previous treatment combo. I'm 3 years on this (we've taken the Perjeta off and on and off again, and switched from tamoxifen to Arimidex) with no progression. It works, especially for those of us who had no prior treatment.
I think some oncologists are more pessimistic than others. Mine is the opposite, she thinks I'm going to live forever! So far, so good
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Bosco Dani's onco never says anything, bcs tx just never stuck much to her, she always had to change.
I would love to know if you ladies, were taking Neupogen along with H/P?? TIA
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