HERCEPTIN and/or PERJETA Threads
Comments
-
DGHoff - that's fantastic. What a fantastic result
0 -
Happy to hear your good news DGHoff! Keep going up that mountain!
0 -
Just checking in with anxiety at an all time high. I have been having abdominal pain for about 6 weeks now and got my scan on Friday and waiting for my onc to call with results. With my initial diagnosis I had one met in my liver with a complete response to chemo (TCHP) and a liver RFA laparoscopic surgery in July. Have been on H&P ever since. Last scan was in December and everything looked good but then I just started getting tenderness in my abdomen and it's been getting worse and now some back pain. I think the stress has finally gotten to me. I woke up this morning and called in sick to work because I just couldn't imagine spending the day at the office waiting for THE CALL from my oncologist. I hate living like this in constant fear of progression and every pain or ailment gets my anxiety going uncontrollably. I don't like to share all these feelings with my family because I don't want to burden them. Thanks for letting me vent and share my feeling as I know you all understand....
0 -
Vent all you need here, josalive!! That's what we are here for! You are surrounded by people who get it.... really! We're all here for you, and sending you much strength and love.
0 -
You are so right josalive - the anxiety is so, so awful and so unfair. We deal with the cloud of cancer hanging over us, and the fear of being blindsided besides.
No good fix for the waiting part. Sometimes I try to envision myself on the other side of the waiting, to after I get whatever the news will be, and this can help (minimally). I try to remember what it felt like when I wasn't full of anxiety, and that I will be able to go back there soon.
This sounds so lame. Just know that I and we are thinking of you, sharing your anxiety and hoping for good news. Hang tough - SUE
0 -
josalive I know exactly what you are going through I have been dealing with anxiety for the last 2 years I take Xanax but hate depending on meds for that I use,to be her2-and was on falsodex for 3 months not working for me so after 3 months Dr ran test to find out I am now her+ so he put me on taxol weekly and h&p every three weeks scan in Oct showed low density in my liver so Dr sent me for y90 which completely drained me to get what was in the liver out of there because he felt the taxol was not doing it so I go for another scan Thursday to see if everything is working I try to talk to my husband but he thinks I should come off all treatment give my body a rest says Drs just want my money so that does not help anxiety either I went from feeling good all the time to feeling exhausted now nobody understand anxiety unless they have gone through it it truly sucks
Patti
0 -
Thanks everyone! I just got the call from my onc's office and although my doctor is out until Wednesday everything is looking good (they never say NED because something always shows on the scan because of the RFA scarring) but it keeps shrinking which they think means it is not active. I'm still in a panic because of this abdominal pain but at least they didn't see anything new on the scan. Thanks for the good advice and being a sound board sue and Patti
0 -
I have come to realize I will never be the care free old self I was before this cancer diagnosis! Every ache and pain is cancer, even though I know it is likely ok. I am having a brain MRI on Wednesday, which is actually my birthday. What was I thinking? Thought I should have a look under the hood to make sure all is well. Someone posted 50% or HER2+ have brain mets. I have stewed about it since. I sure hope all is well.
I guess we just have to go with what comes our way. Someone said, "Boy you are so strong." she felt she wouldn't be able to do it. Like we have a choice, we get up each day like everyone else and hope the universe is amazing!
Wish me luck April 6 as I wish all of you health and happiness on this journey of life
0 -
Losalive, yippie! Hope your pain subsides!
Patti treatment is hard, hang in there! Treatment (the taxotere) will end and HP is really manageable. This to shall pass. There is no reason to think you won't have a complete response to treatment like many of us. Don't let doubts take over! Hugs to you!
0 -
Glad you got good news JosAlive, but I'm sorry you are having pain. Does your doctor have any ideas what else it could be? Hopefully something simple and not cancer related!
Good luck with the MRI bstein. I had one recently and it came back clear. It was nice to have the confirmation that all is well in the head...the relief lasted for about 2 days before I started to worry again!
The anxiety never really ends, we just come up with better ways of dealing with it.
Love to all...
0 -
I will be discontinuing all but Herceptin. I've had a lot of side effects. My MO is telling me that Herceptin alone is easier. Wondering what others have experienced. Did your taste or hair come back?
0 -
mltdd, Hercepton is an antibody that attaches to the cancer cell and presents it to your immune system, so is perjeta. I tolerate both well with no premed required. I have had 12 doses so far.
The other medications are chemotherapy which effect cell division at various stages. It effects all cells so you loose your hair and tastebuds, etc. the side effects are managed by premeds. I'm sorry you are suffering so much.
So yes you hair will grow back once you stop chemo...I wish you well
0 -
Oh Josalive, I totally understand the anxiety! I'm glad to hear that everything came back OK, but sorry you are dealing with pain. I hope you can get that sorted out.
Bstein, good luck with the MRI. I saw that same post about the odds of brain mets, but I'm not quite ready to go down that road yet. I'm working on getting everything in the lungs and liver gone and then maybe I will worry about the brain. Too many other worries to keep track of before I add something new.
Just got the word from my onc today that she expects I will only have to do two more of the weekly Taxol and then I can move to endocrine therapy along with the Herceptin/Perjeta. Not that I'm excited for the hormone stuff either as I hear that can be a bastard as well, but at least I'll have hair. I am, officially, sick and tired of hats, scarves, and wigs.
mltdd, yes Herceptin alone is a lot easier. When I went through treatment the first time some years ago, it was really easy to take just by itself. My hair came back pretty quickly too once the regular chemo was done.
0 -
Hello ladies, it's been a while since I checked in. Just had a PET scan yesterday and remain at No Evidence of Metastatic Disease. Last MUGA was 78. Still have neuropathy but it just feels like background noise. I have some issues with lymphedema following radiation therapy. It's 14 months since I started on THP.. I had limited metastatic disease with only three small sites identified and I achieved Complete Response within 2 months of starting THP.
A former co-worker was recently diagnosed and treated for ER+ Breast Cancer. She has a strong family history of breast cancer and she's young - just 35 with a 5 year old daughter. I keep her in my thoughts and prayers.
I continue to count my blessings every day. We're on a 6 month plan and next PET scan will be in 6 months.
0 -
Congrats, PWILMARTH! That's great news.
0 -
HER2 ladies -
I'm not sure where to post this, so I am posting it here, where I know a lot of us are or have been NED. I was at the Living Beyond Breast Cancer conference this weekend, where I attended a seminar on Bone Metastases, led by a famous researcher-physician in the area of bone metastases. Her talk was very informative, but in the middle of it she just casually threw out this line:
"Very few people become NED."
This stopped me short, as I know many of us here have been NED. I consider myself pretty much NED, as I have some dead tumor still floating around my breast, but the liver mets that first gave me a Stage IV diagnoses have disappeared. I know many of you are in a similar situation. Was the researcher just being hyper-technical - NED as in No Evidence of Disease, not even evidence of dead tumor cells?
So I wonder... According to the researcher, about 60-75% of metastatic breast cancer patients get bone mets. However, I don't think she mentioned HER2+ breast cancer at all. I wonder if bone mets are more common among HER2- folks? I wonder if maybe THP, in particular, has led to more instances of NED than other treatments? (I have no evidence of this - it's just a question I have.) I'm not saying that HER2+ is in any way "superior" to HER2- - there are A LOT more treatments for ER+ breast cancer, for example. I just wonder if our first-line of defense is more effective, at least temporarily.
Also, just FYI, I seem to have been one of the few HER2+ ladies at the conference (Bluefrog was another, and a nice young woman from Minneapolis was the third). I was the *only* HER2+ hormone negative individual I met - a couple of folks said they had never heard of my condition! Apparently we are all freaks of nature here, ladies. On the other hand, there were three clinical trial announcements for HER2+ patients in the goodie bag they gave us (and none for HER2-). I'll post them later. My guess is that it might be harder for researchers to find HER2+ patients, and they are "oversampling" at places like breast cancer conferences.
0 -
Ladies, I usually post in the bones mets thread. I help my daughter she is 31 going on 32 with extensive bone mets for awile. 1 yr ago through a biopsy, she was rediagnosed to Her2+ from Her2- which was the orginal dx. So she's triple positive. Last year was a hell of a year, with constant aggressive progression. She was on Herceptin/Perjeta/Abraxane.Then due to progression, went for Kadcyla. Progression. Then Halaven. Progression.That in itself is very weird, but her Her2+ is triple +++ so it's not dubious, but what gives?
Then this January new doc tried Ibrance/Letrozole and now 3 months later, there were some lesions that actually disappeared in the Pet/CT some were stable(which is a big deal in her case) But some are new! Yep, and anything to the skull did not change.
So my question to you ladies, is: Did anyone ever hear of Triple Pos. taking this protocol, I spoke to Pfizer they said they know some doctors use that off label. But there is no documentation.
As of next week, he wants to continue Ibrance/Letrozole but add herceptin/Perjeta. My problem with it is that in the past these 2 were not helpful at all, so why try again, his take is, now working with Ibrance it will be much different.
Any input would be much appreciated, thank you so much.
0 -
Momallthetime - I don't have any experience with what your daughter has been through, and I wanted to let you know that I am thinking about you and hope that she does well on her next round of treatment. Have you looked at the HER2+ clinical trials? There are some that specifically seek out HER2+ patients who were not responsive (or ceased to be responsive) to Herceptin. I looked into a vaccine trial - https://clinicaltrials.gov/ct2/show/NCT01730118 - and they said they would take me when/if I stopped responding to Herceptin.
0 -
Scrunch I am always scared of clinical trials, maybe it's an old fashioned thing, but I do know someone on the bones thread now on clinical trial and she does not know if she is getting a placebo, so that's very nerve wrecking, and then I would feel we really could be loosing time. I just don't know. But thanks.
0 -
momallthetime - From what I understand, things get very complicated when you are talking about ER+/PR+/HER2+ breast cancer. Or any combination of the above. Early in the history of Herceptin, there was some thinking that Herceptin and the drugs for ER+ disease lessen the effectiveness of each other. But you can't just treat one of the subtypes, because the one that isn't treated becomes dominant. So current thinking is to treat both because, if they treat only one of the subtypes, then the others dominate. This can lead to a cancer that no longer looks like the original tumor, and can actually become triple negative. I don't know if your daughter had any genetic testing of her tumor, but there's a great deal of interest in personalized medicine where they do genetic tests of your cancer to see what type of treatment will be most of effective. This is a fairly new model for the treatment of metastatic disease, and the treatment would be off-label. The advantage is that it is specific to your disease. . Many oncologists recommend re-testing the cancer cells to verify that they are still treating the same type of cancer and that it hasn't morphed into something else.
All of this is an indication of how our doctors have a better understanding of the genetic basis of cancer. How quickly it can change from one type to another and that not all cancers are a "pure" type. If I have 1000 cancer cells and 99% of them are HER2-, I can kill off all of the HER- cells. That will leave 10 cancer cells that could be HER2+ or triple negative. With no competition, they continue to divide and grow, eventually becoming the dominate cancer.
It also reminds me of the way that bacterial cells become resistant to antibiotics. We kill off the bacterial cells that are susceptible to a certain antibiotic, leaving behind only those cells which are resistant to the antibiotic.
Factor in the ability of DNA to mutate, and things get even more complicated/
As far as clinical trials, they are the standard of care plus. My understanding is that the care is BETTER than the current standard.
scrunchthec… Usually, breast cancer specialists report that HER2+ breast cancer represents 20% of all breast cancers. According to The New England Journal of Medicine (NEJM), up to 70 percent of patients with HER2+ breast cancer respond to treatment. However, total remission for the condition occurs in around 7 to 8 percent of patients. This statistic was before THP became the standard of care in the treatment of metastatic disease. The Cleopatra study shows an increase in response to 80%. According to NEJM, complete remissions can last a long time - 15 years or more. Chances are, we'll see better numbers once more data is available on the long-term survival of women on H&P.
As far as the subtypes go, the terminology is changing. Breast cancer oncologists now talk about Luminal A, Luminal B, HER2+ and Triple Negative cancers. This is a good breakdown of the occurrence of the subtypes: Molecular Subtypes of Breast Cancer . This would indicate that the prevalence of tumors of all types that express HER2 genes is higher, but the occurrence for ER-/PR-/HER2+ is relatively low (5-15%)
When I look at statistics from clinical trials, it's not clear to me how many of the women in the data are Luminal B and how many are solely HER2+. Since they are different cancers with different prognoses, it would affect the data if some of the patients were Luminal B.
I believe that researchers are very interested in HER2+ breast cancer because it's become easier to find therapies that work. Because of targeted therapies, I think it's harder for researchers to find women who have failed on THP and TDM-1, which is the standard of care. I'd say that's because of the success that researchers have had in treating the disease. Where there is still much work to be done is in triple negative breast cancers - which seem to be a cluster of many subtypes of breast cancer and where genetic testing and clinical trials with vaccines offer the best hope for finding effective treatments
0 -
Momallthetime, there is a real possibility that she has two cell lines in various places. The combination might be just the ticket to get get rid of the Her2+ and possible residual HER2- cells! Give her a hug for me, this could really work
0 -
You and your daughter are really in unknown territory, so I think we can all appreciate how much anxiety you and your family are experiencing.
Thoughts and prayers for all of you. It seems that there are some clinical trials that are in a very early stage investigating this use.
0 -
Dbstein - that's a very interesting take, about the 2 lines, hmm, gonna mention it to him. Gonna look real smart. He has to figure something out. The hugs consider it done, and right back at you.
pwillmarth Oh my!! How are you so learned in this thing??? What a pleasure to read it, I was not expecting this explanation. I did hear from someone else about Luminal, but we were never told anything about it, and I don't remember seeing it in the original report. So how can we find out?Looking at the chart from the link you sent, she should be Luminal B. So how would this change what's going now? Doc knows that, bcs he has her original reports. She was on everything already, i think.
Now to make things more interesting, Onco sent NP to email me that he decided she won't move on to add more tx, BUT stay on Ibrance/Letrozole. Hmm, tomorrow morning we have a scheduled phone conference with him, usually Dani does not like to be involved with the clinical side of this monster thingy, but I asked her to be on it, so we could make him crazy, and he's really gonna have to explain himself.
Now the fact that if the PET is correct, then the Ibrance which is guided for HER2- ppl is working on Her2+. And all the good stuff for HER2+ was not working on Dani. She wan H/P/A and then TDM1 on it's own. Much progression when she was on it. That is really strange. Unless nothing is what it is. The biopsy was double checked by a different source in Sloan, and then another biopsy this year confirmed status, so that's insane.
Our heads are still turning, from the comical first paragraph of the Pet/Ct report, new hypermetabolic lesions ribs etc.., but stability here and there, and some resolution in the femur. really? and stability, is supposed to makes us happy, but she has such extensive mets, I've seen the pictures, they are like a Christmas tree, that by not telling me that they got smaller or disappeared I'm sorry, it's not my happy dance.
I am thinking of Dr Robert Nagourney also, he has a different take on the cells, something like they don't proliferate really it's more that those that stay are because the don't die. He takes a sample of the tumor and tries all options to see what really works for that person. Did anyone here of him, he is in CA. Maybe it's worth a phone call.
So many wonderful ladies, suggested names for opinions at Dana Farber, and I was asking about Univ of PA, and voila, someone on the bones thread goes there. So maybe we will do that.
Something is missing here, I can't put my finger on it. Dani is devastated, she tries to go about her day in a "normal"fashion, she has to and wants to be just ok when her 2 little girls come back from school, she helps so many ppl, she cooks for others that are sick, ppl don't even know she has something going on. So I have to make sure that she is getting the best care. I think doc wants to preserve the other stuff when it's needed? To be honest, I told him she does not want to be debilitated bcs she has to take care of her fam, so maybe that's why he's holding back?
Thanks again!!
0 -
What I've learned about breast cancer is a result of my own journey with trying to understand my disease. I'm a registered nurse who spent a fair amount of my career working at teaching hospitals. That work kept me around leading researchers in medicine (not oncology) and has taught me how to read and understand what the doctors are thinking when they look at our cases.
I've always had a natural intellectual curiosity and I believe that we can deal with our disease if we understand it better. This site has been helpful in pointing me in the right direction, but my understanding of breast cancer and its treatment deepened after I listened to several breast cancer oncologists discuss this on webcasts at Living Beyond Breast Cancer. Those doctors are some of the leading minds on the current treatment of breast cancer.
We have a diverse community of women on this website. One of the ladies who is a frequent visitor here writes a blog, and in it, she discussed the University of Washington Tumor Crowd Modeling Platform. It's program open to any patient with cancer who would like the opinion of experts from around the world on their particular cancer. It involves submitting your cancer to their database and various experts review and discuss what they think might be effective. This is really the cutting edge of breast cancer research, since it is truly personalized, and through the power of the Internet, you can reach out to many experts.
The other thing to realize is that your current oncologist also has access to experts at other cancer centers and they often discuss difficult cases. At my cancer center, they have a tumor board, and I know that my case was presented to it when I was first diagnosed. I'm currently in remission, so I'm just a blip now. But I also have learned enough about the treatment of my type of cancer to know what the next step is, should it become necessary. And that, should the need arise, a clinical trial is always an option.
By no means do I consider myself an expert on this disease, but wherever I can, I like to help others understand what's going on with their bodies. This is a chronic disease that requires a lifetime of care and I always feel for the women who are young, like your daughter and are hoping to see their children reach adulthood.
God bless.
0 -
momallthetime, I am also triple positive, I was originally her2-. My switch from her2- to her2+ was so quick that I believe that both were present from the start and her 2+ took over as the other cells were killed off. I saved an article on my phone about triple positive patients that I cannot figure out how to find, if I can figure out where it saved, I will post it. The article basically said that some triple positive cancers behave more like hormone positive her2- cancer and that they are trying to figure out why. The article said that it was a small study and that more studies are needed before they can reccomended discontinuing her2 treatments for those patients. Perhaps if the hormone treatment does not seem to be doing enough, adding back in her2 therapies will be the right combination. There is one lady, pearlady I believe, that is taking ibrance, perhaps you should touch base with her. I will post the article if I ever find it!
Kim
0 -
Re Neuropathy,
I found taking Magnesium ( I use Calm) or a boiron product sometimeshelps with the neuropathy....
Can you take a chemo holiday or reduce your dose?
I also use a diabetic foot cream...
Hope this helps in some small way....
Have you tried mindfulness stress reduction..there is a book on mindfulness and cancer...
Good luck
Newbie20111
0 -
I am 65 with Her2++, while my sister 54 is Her 2 + neu-...we were surprised. Mine now Stage 4 (NED at 1month of dox...Been on herceptin/Perjeta reduced dose Perjeta for one year. Four months dox...excellent response for skin, subclavian,axilla reoccurance). Hers is Stage 3 no Mets ( at the moment) ....We had very different treatments....I am glad to hear the neu- getting some play. ( I adore my "baby" sister) . Also have three other sisters: The oldest, a mother of three, grandmother of one; and a younger sister, a mother of 5, with one 28year old daughter with triple neg, grandmother of 4 ;and an unmarried sister who is a vegetarian. I also have more than 30 first cousins on my mother's side, several women who have died of various cancers but not necessarily breast cancer.
Have a couple of friendson Ibrance with excellent results so far.
0 -
Moderators,
i hope you dont go the FB route..they are adding a billion users a year! Who will be in control when they are hacked..just a matter of time.
I dont do FB or twitter etc. ( Voyer on others but do not have an account...you do not have to use real name)
newbie20111
Please no pics...
0 -
Dbstein you know I used your line about the cell having 2 lines with doc today, he said I was just gonna mention this.
Yes, he feels very strongly that there is something going on, a component, he IS gonna add the Herc/Perj but then we will be speaking again tom morning and he will decide if mabe tweak it w something else. Thanks a lot.
Pwillmarth love your posts. This thing about being able to send the info to a bunch of biggies and get some response, I will look into it. Interestingly I was also always interested in the innerworking how things come together in Medicine. I have like 40 books at any given time, about doctors, stories about their internship, Dr Groopman's books, Dr Gupta, Dr Schneider, you just name it. I haven't touch a fiction book in years. It's hard to explain. I try to understand, I have a great responsibility, bcs Dani totally relies on me for this clinical side of it. She is great with everyday life, she is very decisive, takes her meds, she always knows about reordering, but she does not have to listen and see all the details. And we get that, she gotta have some disconnect (if there is ever one) so she can be a good mom.
It's mind boggling that I could actually get to ask all these ppl what their opinion is in this instance. I will have to look into the University thing tomorrow. This is really something. Thank you for all the explanation. Tomorrow I will update you and let you know what the final word is.
Kim who is that adorable bundle with you? How old? Awesome. It's so interesting what you mentioned, is exactly what doc explained to us today.Nothing is black/white with this thing. Kim I am just curious, why did you do the biopsy so soon? Dani did hers when there was much progression but that was yrs after first biopsy.
And Pearlady yes, I am trying to get in touch with her. She is the only one that responded to my thread, Stage IV Triple Positive taking Ibrance. There were no other takers. Pfizer told me when I called if it could be used in her status, they said, yes, they have heard of many docs using it "off label".
'Take good care,
0 -
momallthetime, thanks! that cutie is my grandson, I also have a little granddaughter, they are so amazing! I had a biopsy at my initial diagnosis, I had chemo before my mastectomy and then the tissue from my mastectomy showed the her2. At my initial diagnosis I had the breast biopsies and a few days later a lymph node was biopsies and both showed her2-. If I knew then what I know now, I would have questioned why I wasn't having a better response to chemo, tumor did not shrink much. I had chemo first because my skin seemed involved and we were worried about having enough to adequately cover the mastectomy wound. I look back and think what if I had called my family doctor instead of the nurse practitioner that took months to diagnose me or if I had my mastectomy first, or a million other things...I know that I am not alone with those thoughts! I try to remind myself that maybe things could have been worse and let it go! I do think that following these discussion boards is helping me be more educated moving forward, I really appreciate everyone!
Kim
0
