TRIPLE POSITIVE GROUP
Comments
-
Ingerp, chemo is the baseline for Her2 pos patients with an invasive bc. Herceptin was first tried with chemo and considered to be most effective with chemo too. SpecialK can give a better answer
0 -
Thanks, Cherry. I've been doing some reading--lots of women asking about herceptin without chemo. I also saw some studies about not being on herceptin for a whole year. I am getting ahead of myself, but I do like to have the information going into these decisions. It calms me down.
See it looks to me like only a 3% difference in 3- and 5-year overall survivor rates between herceptin with and without chemo.
0 -
coach - body fat, the liver, and your adrenal glands continue to produce estrogen after menopause and/or removal of ovaries. Aromatase inhibitors seek to control the conversion of secreted androgens to estrogen, which is why post-meno women are still put on anti-hormonal therapy. AI drugs are the more common choice because they have a performance edge over Tamoxifen, particularly in Her2+ patients, unless one is osteoporotic prior to treatment. You can do a blood draw for the extra sensitive E2 estrogen test to determine what your serum estrogen level is - this is different from the test that determines whether you are truly menopausal - this test is supposed to give a better reading of the type of estrogen that is produced by the aromatase conversion and helps determine whether there is benefit from taking an aromatase inhibitor, but the true reading needs to be done off meds.
ingerp - prior to the use of Herceptin for early stage patients all trials were for Herceptin added to chemotherapy. Because the early trials (HERA and BCIRG006) had a significant and demonstrated beneficial effect from adding targeted therapy to chemotherapy (either AC-T or TC drug regimens), doing this became standard of care for early stage Her2+ patients. Withholding chemotherapy presents potential ethical considerations because there is probably benefit for the use of chemo absent the Her2+ aspect of the cancer. One of our members, deni, has just participated in a trial that combines targeted therapy, Herceptin and Perjeta, with anti-hormonal therapy but no infused chemo drugs. This is an early trial and unlikely to yield changes in standard of care for quite some time even if the outcome provides benefit for the trial participants. Using Herceptin without chemo is available as an off label choice for early stagers by oncologists and is very infrequently done for those with significant co-morbidities that prevent use of the chemotherapeutic agents. Several years ago the use of Taxol only with Herceptin became available for those who are node negative and have tumors less than 2cm as a single chemotherapeutic agent option, which usually is much more tolerable than regimens that consist of multiple drugs. So, to answer your questions - Herceptin (and Perjeta in cases that warrant its use) when added to chemo produces better results than chemo alone. Herceptin (and Perjeta) without chemo has yet to be proven to provide results that are as good, but is now being looked at. Changes to standard of care require rigorous FDA trialing and are slower to materialize than patients who are in the throes of treatment decision making would like, of course. If I was diagnosed today instead of 2010 when I was treated, I would have had Perjeta but it was not yet approved - it is now standard for those with my clinical stats due to trials that showed the benefit for a certain subset of patients.
0 -
Thank you so much, SpecialK, your information really speaks to me. This Friday I have an appointment where I will get all the test results, hopefully find out that the margins are now clear and start a plan for the next step
0 -
Hap, I have not been running outside for a few weeks now since my PT told me that I could not do it with my current plantar fascitis condition. It is quite cold here too, below zero most of the time and lots of snow. But I have been running on my thread-Mill, or I think I have the one that is called eclipse. I am trying do at least 40 min at the decent resistance and when I am done I am usually drenched with sweat, but it is going too slow, I mean losing the weight. I have ordered the new jogging shoes though, will pick them today, expensive but some amazing cushioning so I have great expectations.
I know what you mean about the treatments and we do still have to undergo them to be able to live but I would say like this if I can tolerate them I will do it. I agree with you that your exposure to scans might have caused your bc, we have a lady in our chemo group who was treated for leukemia at her 20-ies and now at her late 40-ies she got bc, they told her the same thing. But I do not have any idea what have caused mine. As I have mentioned I consumed a lot of turmeric, veggies, cabbage and not that much meat at all, we had periods, months without red meat because some articles mentioned it increased risk of colon cancer, so the eldest girl used to tell me, mom please let us buy some beef, she loved it, the poor thing. That is probably why the youngest does not like meat, she is not used to it if it is not grounded, five-six years ago we seldom ate beef and we only ate pork during summer when we occasionally barbequed. And still I got this bc. As one doctor told me cancer is a result of occasional system failure, that is still extremely rare. Cells going rogue, dividing wrong etc, happens all the time but it gets corrected On the cellular level. When th system responsible for this correction fails to destroy it you get cancer. It is just an unfortunate clash. Majority of women with pod genes fo not get bc. Those like me, no family history, running three times a week, we do.
Cherry
0 -
And I also wanted to share with you all that we are getting a puppy in the end of April. A small Welsh Corgi Pembroke, hopefully a red one. We have not meet the puppies yet and we may fall for one of what they call tricolor, sort of like German Schaffer color, we will see. Our youngest became sort of calmed down, because she finely knows she is getting one, but on the other hand she cannot wait to meet him nd I am afraid she is going to dissolve into happiness sitting there surrounded by all these puppies when we will be visiting the kennel for the first time in the beginning of April to pick "our" puppy)
0 -
Special ... a million thank yous.
Cherry ... missed you.
Vicky
0 -
Hapb - thanks for the article on mushrooms, I love them! They can't hurt so I will use them more often.
Cherry, I missed you! I love your posts, you are pretty witty at times. Congrats on getting a puppy - dogs bring such joy. I hope your depression gets better. Keep exercising, they say that helps lift the mood. Thank you so much for the recap from your MO on diet. My MO and BS said similar things. I do know that I feel better when I eat mostly a plant based diet and it is so easy to keep the weight off. However, I do enjoy a treat and a cocktail every now and then. I am striving for an 80/20 balance so I don't feel deprived. It seems there is no good predictor of who will get cancer or recurrence so we need to find a lifestyle balance that gives us peace of mind. I do think stress plays a big role, more so than diet or alcohol but that is just my opinion.
Specialk - thank you as always for the detailed explanation on hormones and HER2 treatment. You have such a great way of explaining things!
Nicole - glad you are done with treatment. I'm sorry you had such a tough time. Thanks for your encouraging message to those who are new to the cancer journey. It is so scary in the beginning and the road ahead seems daunting. But we can and do make it through the treatments, surgeries and side effects. It's not always easy but we are survivors ;-)
0 -
SpecialK and HapB--yes--I love the information!! It's just that I know if you present a problem to a surgeon he's probably going to want to cut, and if you present a dx to an oncologist, you will likely go on the recommended protocol. I KNOW THAT'S NOT A BAD THING and maximizes the probability of a good outcome. I'm sure it's done for liability reasons as much as anything. I've just always tried to be as conservative in treatment as possible. Certainly there are women who would do just as well without the Taxol/whatever along with the Herceptin. I know standards of practice are slow to change. Anyway--again, I am way ahead of myself. I haven't even had surgery yet. In the meantime, I'm eating like a box of mushrooms and a stalk of celery every day, and am drinking green tea and Pinot Noir every day. It can't hurt, right?
Cherry--we are on our second Corgi. They are soooo full of personality. We also have a black lab mix (like twice as big as the Corgi) and you gotta know the Corgi is alpha. I was watching the Westminster show a few year ago, and when the Corgi came out and they guy was doing his little blurb about the breed, he said, "they can be quite. . . bossy." I thought yes! That's it! They really are bossy. You will have so. Much. Fun.
0 -
Ingerp & Rebecca - so sorry you have to join our group but you will find lots of support, encouragement and inspiration in this community. The time just after diagnosis is the most emotional and overwhelming. Ask lots of questions, get a second opinion if you feel the need and make sure you have complete trust in your medical team. Have faith you will get through this and we'll be here to help you along the way.
Specialk provided a great recap of HER2 treatment history and options. I participated in the clinical trial without chemo because I was concerned about the damage chemo can cause to healthy cells. I had a near perfect response to treatment with clear lymph nodes and margins and only a few single cancer cells remaining in the breast tissue that was removed. The treatment plan you decide on is a personal choice and this is why asking questions and getting as much info as possible is critical. We all respond differently to medications and the DNA of our bodies is all different, therefore you must rely on your medical team to provide options that will give you the best long term outcome.
Below are links to the press release and clinical trial I participated in.
www.marketwired.com/press-rele...
clinicaltrials.gov/ct2/show/re...0 -
Tres, I was on Mirthazapine before and they told me it was ok to rake with Tamoxifen and now I got Escitalopram, the substance has the same name. I got it from the rehab at my clinic, my councelor is a former nurse and the psychiatrist is only dealing with people like me, like us. They work very close with MO office, I assume I got the one can be combined with Tamoxifen and my MO saw it in my journal, because she said it to me when I mentioned that X wanted me to tell her that my sick leave needs to be prolonged and so on. I really hope this med is one of those
0 -
deni1661, glad I could help with my MO recommendations and answers, I missed all you, and you were one of those who always offered a kind word or a piece of advice in the beginning when everything felt just horrible.
I intend to drink dome wine and eat some meat, all in moderation, I would even say I would rather give up the latter than the former. I know that if I stay away from bread and jamon serrano I just get miserable and can end up half of a whole-wheat baguette one evening. Some ice-cream and cheese must be ok too, otherwise I feel exactly as you say, deprived.
0 -
coach, missed you too)) I realized that I never tasted a mimosa and decided to do it this Friday after my final rads
0 -
Ingerp, how fun! I do not know much about Corgi, never had one, but long time ago I had a lajka and a schäfer so I think a Corgi cannot be more difficult than those were even though it is rather a big dog in a smaller package so to speak) I liked the looks so much that we decided to opt for one and we are going to name him... wait for it.. Mr Darcy))
We will see how our cat will react, right now the poor thing that only ests and sleeps has no idea what is ahead of her, so I believe we will see a clash of personalities
0 -
Great post, deni. (BTW--I went to grad school at UW. Lived in Madison for three years and then Milwaukee for three years. I love the Midwest. :-) )
0 -
Rebeccasmile, I am so sorry you had to join this thread. You sound just like me back in August when I stumbled acrosd these boards when I was turning the internet upside down for information. Her2 pos is an aggressive form of cancer and treatments are long but very effective. Herceptin changed the game for Her2 pos and at your stage you most certainly have years ahead of you. Stay on these boards for both venting and piece of advice. You can do it and you will be fine. Hugs
0 -
hap - just wanted to flesh out the details in case readers on this thread don't/cant read the link you posted. It is important to note that the immunotherapy trial you noted was to treat relapsed lymphoma patients - so, more advanced stage patients that were already experiencing complications, and this was a Phase I trial - the FDA phase that is intended to establish safety. Drug trials take an average of 11 years to go from initiation to approval, so this was not a drug anywhere close to being used for mainstream purposes. I don't mean to ever minimize any patient death, but anyone who signs up for a trial is made fully aware of this possibility, particularly in the earliest phase because the sole purpose is determining the dose that can be safely administered. There were two dose levels in this trial and the deaths occurred in the higher dose arm, and the FDA is the one who halted the trial.
ingerp - standard of care exists because it has proven dose info, approved drugs, and has been shown to benefit the patient in controlled and measured scenarios over long periods of time. Individual oncologists follow it for these reasons, but they are also free to make treatment decisions based on each patient's clinical presentation, within reason. You may have a hard time finding an oncologist to administer Herceptin unless you have a documented co-morbidity that prevents using chemo, as the majority of docs would feel they are undertreating you.
0 -
Thanks, SpecialK. Way deep down I do know that. I just have to let my brain take its time getting there. I trust my medical team, and in the end I'll want to maximize my probability of a good outcome. (And this is probably the most overused phrase on this site, but I really did not see this coming. I'm definitely still processing.)
0 -
ingerp - totally understandable - I don't think anyone is really prepared to hear it. It is a steep learning curve, but hang in there and you'll get to a place of readiness. It is great that you are actively seeking info - it will help you assimilate that much faster. Remember, we are always here to provide support, and answer questions if we can!
0 -
cherry...you are good to go! That's lexapro :-)
0 -
hap - first, nobody can read the link you posted without a subscription so I can't tell what it says. Second, right above the snippet I can see the author amends to indicate there was a mischaracterization of the disclosure. My understanding is that the drug maker kept quiet about the deaths publicly, but this does not mean they hid the data from the FDA - who is ultimately responsible for approval or not. Not announcing public results from a Phase I aspect of a trial is related to their financials, but the FDA process is independent of that. I don't personally feel that most oncologists treating us use drugs and treatments that have become standard of care based on less than fully vetted information.
0 -
hap - Dr. Angell was not the editor in chief of the NEJM for 20 years, she served on the editorial staff and was interim EIC for just one year, and that was almost 20 years ago. She withdrew her name from consideration for the permanent post so she could write a book on alternative medicine. She is but one point of view, hers happens to be critical of our current system of drug approval - among other things, and I say this not to agree or disagree - just to clarify.
0 -
hap - I was quoting Wikipedia regarding her departure from NEJM, that wasn't my personal assertion. Thanks for adding that info.
0 -
I really want a corgi!! 3 elderly beagles, a dumb Scottie, and 2 clever mutts here....
0 -
She is darling!
0 -
astyanax66))) It sounds like you already have a full house))
0 -
Tres, phew, thanks, good to know! Istill take some Mirthazapine on the evening for my sleep but they said we will try to whean me off it.
0 -
Rebeccasmile… Strange thing is that no one knows how long they have. Once diagnosed, however, I believe mostwomen begin to cherish everyday. I know that I have.
Ingerp ... you wrote: but I really did not see this coming. Neither did I. Remember replying when I was told I had breast cancer, no way, I am dying of a heart attack early on! (Actually, there were some foul words before that. When my girlfriend got her diagnosis another girlfriend was with her. My friend said "poop." Her other girlfriend knowing like I do that our common girlfriend is capable of very colorful language, replied "You have cancer and all you can say is poop?" Girlfriend said there is a statue of Jesus in the room keep it at "poop.")
I digressed ... Once I knew this was going to be my rodeo, I got on that horse and made every barrel jump anyone threw at me.
7 June will make two years from hearing my first diagnosis. In some ways it seems like yesterday and most days it is barley visible in my rear view mirror.
It does get better.
Vicky
0 -
coachvicky you are so sweet. My mom actually had BC at around age 62 (so definitely post-menopausal), and of course does not remember the exact dx (yes--she's doing great at 89), but it sounds like probably DCIS. She did say that a doctor told her at some medical visit years later that if she'd gotten that dx then, they would have done a lumpectomy vs. the mx she got. But no other cancer in the family. Really--none. Like 8-9 years ago I had ALH, and then the DCIS two years ago. I was not terribly surprised but I REALLY believed that would be the end of it. I said back then, "Cancer is not going to kill me." In fact, I haven't thought of myself as a "survivor"--seemed like Stage 0 with the relatively easy treatment I had didn't really count. And it has been so out of my brain space--I hadn't been on this site for like 1.5 years until this week. I'm a little pissed that I feel like after whatever this journey turns out to be, it will NEVER leave my brain space. I love your rear view mirror comment. I guess I'm looking forward to a time when that's possible for me. (And I know all of us have terrible thoughts, and I do understand that I am fortunate that my kids are <mostly> independent now, but two are recently married and DAMN I've been looking forward to grandkids. I think realistically that's still 5-ish years away for both, but I never in my wildest dreams imagined I would not be around to meet them. My dreams have been wilder of late. . .)
0 -
Cherry, I always love reading your posts
. That's all I have to say there.Corgies!! I know nothing about them, but they do seem so cute.
Hapb, I've read all your posts over time and can see that you are very disillusioned by how things are at this time with treatments, studies, ethics. I think it's great that you analyze and don't take anything at face value. I appreciate the resources you link. The only things I would like to throw out there are: 1. We are where we are with respect to treatments. I just saw an article posting 200 drugs in development and trial for metastatic cancer. We are stepping into a new frontier with immunotherapy. Despite all flaws, there has never been a better time in history with respect to bc research. It's dramaticslly evolved in 50 years. Is it nearly “there"? No. Do I wish it was? Fervently so. But I will take it, 2. This is a point of debate, I realize. But please understand that for many of us, conventional treatment is vital. It is dangerous to demonize the treatment path when it truly is the best shot for many. I clearly don't have studies to properly compare the alternative path versus conventional (they don't exist), but the science behind pursuing alternative alone is not there. And any stories shared do not properly evaluate and separate out factors involved in that person's healing. Stage 1a is not 2b or onward and I'm just trying to put this out here on this thread because people new to this board need to understand what all paths offer in reality. I firmly defend treatment to some degree for all invasive cancer. I'm not trying to engage in conflict here; I respect your own journey and your intelligent and questioning mind. But I too have done my research and just want 'newbies' to feel comfort in accepting treatment if that’s what they have chosen - that’s all.
Everyone needs to feel some kind of peace with what they are doing...we’re all doing the best we can given where modern medicine is at
. 0
