TRIPLE POSITIVE GROUP
Comments
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speedy, I did the taxolx12 also. Tolerated it really well. My onc says they are using it a lot more frequently in Europe, I believe. My tumor was just under 1cm. He was more concerned that I receive the herceptin and said, in his very proper Indian voice"You need a little chemo to make it work well."
SpecialK-16 days until I head back to Wake Forest for my Vaccine trial 6 months booster. Hard to believe it has been 6 months. You shouldn't be too far behind!0 -
Hi to all you wonderful ladies!
Here is a current medical posting relating to the benefits of sticking with Tamoxifen for 10-plus years, especially applicable to pre-menopausal women but also directed to post-menopausal women who struggle to take aromatase inhibitors due to their toxic effects. Yes, I know, studies with varying viewpoints exist re: this issue, but just letting you all read it so you can ask questions of your treatment team and be better informed yourselves. Have a wonderful day
. Here is the article:http://www.sciencedaily.com/releases/2013/03/130320115008.htm
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Hmmm...seems to be a lot of conflicting info regarding the taxol/herceptin 12 wk regimen. My treatment: I had surgery, 1.6cm tumor removed. Then chemo A/C (4), taxol/herceptin(12), now rads which always go with lumpectomy. I think MO's recommend chemo regimens based on individual pathology reports. Herceptin is for her2+ only.
gratitudeforlife, the hospital in NYC where I am being treated told my friend the tamoxifen is now being recommended for 7-10 years.
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Waiting....you are right, it does depend on the pathology. In my case, my tumor size was just under 1 cm. My breast specialist said probably no need for chemo, just take tamoxifen. Then the FSH test came back, and I needed herceptin. She believes in it so strongly, she thinks even tiny tumors should have it. I interviewed three oncologists. Two of them had the exact same protocol. They said for me, the most important thing was herceptin, and it had been shown to work better when mixed with some chemo. They both suggested taxol weekly as it is generally tolerated better with fewer side effects (note I said generally). In my case, it wasnt too terrible. I had other things reconstructive related that blew up.
The third onc was very young. Se recommended AC, and a couple others for an 18 week time period. Both the other oncs thought that was way overkill. So, I decided to go with the majority, lol. I hope it turns out to be an ok decision.
Gratitude....I have to pull away from the Science Daily site. I read one article then start clicking on other links, and reading and the next thing I know, I have killed two hours!0 -
Fluff u made the right decision.
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Fluff I also find the Science Daily site tends to write in a way that sometimes over exaggerates. You really have to read their articles carefully. They don't lie, it's just the way they are written that at times causes unnecessary alarm.
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I think so too, Lago, when it comes to Science Daily, even though it can be a helpful site to troll for the latest information -- skimming doesn't work well with that site.
I also want to again indicate that because trials have never been completed as yet for the use of trastuzumab without chemo, scientifically it is not accurate to describe the use of trastuzumab as being more effective when trastuzumab is used with chemo. That MAY at some point be proven to be true, but as of yet it has not been proven. What has been proven is more correctly stated as "chemo is more effective [for certain patients, primarily HER2 positive patients] when chemo is used with trastuzumab."
In other words.... trastuzumab provides an extra punch for chemo -- not the other way around. It is an important distinction, because it is still quite possible that trastuzumab when used alone (without any chemo) may in fact be adequate for some breast cancer patients, such as early stage patients.
We simply do not yet have trialed documentation one way or the other.
People have a tendency to want to believe that chemo is essential as a kind of a fear factor almost iron-clad garantee that they won't be the ones to recur if they do the tough treatment. But even so, it is not accurate to say that it has been proven that adding chemo to trastuzumab makes traztuzumab more effective. It is the other way around. Adding trastuzumab has been proven to improve upon chemotherapy used alone.
This is a very important distinction to make, because at some point it may be possible for some patients who get no benefit from chemo but who might benefit from trastuzumab alone, to be able to not suffer through chemo and its many SE's, additional expense, etc.
A.A.
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AA,,
Great point. I think it will be wonderful if they do a trial to determine Hereptin is good without chemo. But I don't know how they'd get women to do it...unless they solicited women who refuse chemo but will take Herceptin by itself, and then publish the results.
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TonLee. I was 73 yrs old when diagnosed. I wanted herceptin without chemo but my MO said the protocol was chemo & herceptin,so I did it,but I would have gladly skipped the chemo..I was even willing to participate in a trial..
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Ladies,
I hope you can help. The pathology on my Lumpectomy showed insufficient margin. I'm opting for BMX with TE&Implant reconstruction (orig scheduled for 6 weeks post chemo to avoid any need for radiation therapy).
I then had a staph abcess in the breast post chemo, (inpatient admit) 2 days before scheduled and surgery delayed. The PS says he won't do reconstruct until 6 mos. without staph, due to increased risk of infection on TE. I don't have a problem with that, but now I have to decide whether to wait to have the BMX (which will be a 9 mos. delay post chemo) or to go ahead with the BMX and have the reconstruct later.
Does/did anyone have similar delay post chemo to surgery, or experience with BMX seperate from TE implantation?
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CTRLfreek What does your BS say. I would think they would want to remove the questionable tissue now if wasn't clear and you aren't having rads.
contact carrol2. I think she had her TE's sometime after her BMX (not for the same reason as you though but a scheduling issue with the PS). Give her some time because she does work random hours. Tell her lago sent you.
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?Welcome Cntrolfreek--I'm sorry u have to be here--but keep checking this thread there are so many women who might have had this done. I don't know anything about this, But Lago does-so as she sugested what does u'r Dr. say.
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CTRL - in looking around on the threads the member sassa had delayed recon with TEs. Maybe you could PM her and ask her about her experience. Most of the people who have had delays seems to be rads patients who had to wait for skin healing, so I am not sure their experience would be similar.
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Eileen,
I don't know how your center works, but I know a woman in her 70's at my center who refused chemo...was willing to do the Herceptin, but they're all or nothing at my center. I don't understand why they won't do it alone for women who refuse chemo. We could gain a lot of important information from women like you willing to do just the Herceptin.
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Thanks TonLee.. My cancer center will not do Herceptin without chemo. I was told that insurance would not pay for herceptin w/o chemo. So glad it is behind now. There are trials for Herceptin alone going on now, if I remember correctly the trial will be over in 2016.
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The trial for trastuzumab without chemo is for breast cancer patients who are 70 or older:
http://clinicaltrials.gov/ct2/show/NCT01104935?term=trastuzumab+70&rank=4
Enrollment may be slower for this trial because HER2 primarily affects younger women, so there just may not BE a lot of people at that age to enroll who are HER2 positive.
It is not uncommon for oncs (with patients who are very early stage) to be willing to prescribe trastuzumab alone. They also often will offer trastuzumab alone to patients who have other health problems that could be adversely affected by the use of chemotherapy and all the support drugs used with chemotherapy.
A.A.
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My onc will prescribe herceptin alone, although he doesn't really like to do that based on current protocols. He feels they still need to know more, and feels better including chemo as part of the protocol. He has a couple women that are only receiving herceptin, but I believe both are results of something else medically related.
I agree with your comments on Science Daily, Lago, but I still managed to kill two hours just clicking away...ended up way off topic but interesting, lol.0 -
Hi ladies! MAN is this thread busy!! I am so behind – took me like 3 hours skimming at warp speed to catch up. I apologize in advance for the novel.
Camillegal, so glad the back pain isn’t cancer related.
In terms of juicing (I know that conversation was weeks ago), I was told that you need a lot of fiber with your carbs, otherwise you might get an insulin spike and that is bad vis a vis cancer/recurrence. If juicing is what really works for you (it’s also important to get all those veggies!) then try to eat them with fiber or get some fiber in there somehow.
Speedy, re taking herceptin alone, I asked Dr. Slamon (inventor of herceptin) about it. He said that there was a group of her2+ women who had not had chemo and refused it, and had herceptin alone. Those women did not do as well as the women who had the herceptin and chemo. It wasn’t a double blind blah blah study so not published. I had the same question and my appointment with Dr. Slamon solidified for me that I needed to bite the bullet and do chemo.
SpecialK, interesting article about melatonin and bc risk. I am a natural insomniac and so is my mother, who also had bc.
TonLee, ugh! I actually LIKE to eat kale raw, I use it in salads. So now that’s bad? Oh all this stuff I should and shouldn’t be eating makes my head spin. Aaargh!!
LeeA, a facebook friend posted about the most adorable batch of german shepherd puppies that are looking for homes….
SpecialK, ALH? ADH?
Fluff, I also worry that if I don’t worry I might not be vigilant enough and I might miss something.
Vball, congratulations! Glad to hear it’s b9
Sasha, I got thrush during chemo. What helped was gargling with warm water with salt and baking soda, drinking my kefir smoothies (tons of probiotics), and taking probiotics. But mostly the first thing.
Aches and pains – ok I have been having these spasms while I’m asleep in my lower right leg. I mentioned this to MO and he said it might be electrolytes. Also, and somewhat disturbingly, my right arm seems to be getting weaker, and I don’t know why. I can tell because I’m a swimmer and I know how many laps I do of what kind of stroke, so it’s easy to track. Any thoughts? There isn’t any discernable swelling.
Jlynn, I was reading your posts-- I am on a clinical trial for early stage her2+ women to get pertuzamab prophylactically along with herceptin and chemo. I don't know if i'm in the placebo group or not.... I'd be very interested to read about any of your symptoms b/c I'm curious! I frequently have very odd-smelling pee (kind of a cross between that smell when you've eaten asparagus and a burning smell. Without having had asparagus).
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Iago - Thank you, I will contact carrol2. My BS isn't comfortable giving a recommendation until they take my case before the tumor board again....another week to get an answer....I strive to mentally balance the quality of care I'm getting...which is outstanding...with the frustration of having to coordinate and keep communications going with all the different teams and drive my own overall treatment. Major communication/coordination disconnect between PS and Onc/BS clinic.
At this point I'm convinced that it's not worth the risk to wait and it will be great to talk with someone else who has a delay between the BMX and TE.
Thank you!
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Thanks for the welcome ladies,
My BS says they need to go to tumor board before a recommendation, but I will push to have the BMX right away. Thanks again Iago I sent a message to Carol and yes Cam, I am looking to find others with the experience of delayed reconstruct after BMX.
I'm also going to spend some time on the threads for TE's and implants as I now have more time to rethink and replan and check to ensure that I'm getting the right devices. I was so sick with chemo that I didn't do enough homework. Maybe this is just part of the cosmic plan that will allow me some time to make the best choices.
Thanks to you all for helping me be positive. I lost my hair but found a new world of wigs and headbands. I have neuropathy but now I'm a "comfortable but stylish" shoe expert. I ached from neulasta, which was a wonderful opportunity for massages from my husband of just over a year. My skin was dry before and after taxotere pimples, rashes, and infections, 9 weeks after chemo my it's like I've just healed up from the most marvelous internal chemical peel, my 49 year old face is smooth as a babies butt! I found out who my best friends are and I have a world of new ones here online and locally. I'm continuing to find out that although I was strong and capable before, I can get through more than I thought.
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Cypher I love when u post and miss u when u don't--I don't know if u have a double screen or u'r memory is that good, but all in all It's great. Can I ask u a question Please and if now answer no problem---If u'r on a trial and getting placebo why do the trial? I mean does that mean u'r not getting any benefits from anything. I just really don't understand the meaning of putting a woman with cancer on pacebos.
OK 2nd question. My Onc. said my back was clear and I had an MRI on my back, and the Dr. seeing me probably saw all the damage my vertabrae and discs are in--Now the first Dr. that saw me did do an ultra sound on my back, he did it on my kidney and bladder (which I have another infection) he saw the can cer there and the MRI showed a small part of my kidney. So my question is am I being a total bitch wanting to know about my full kidney and my bladder, could there be cancer there that didn't show up on the MRI--since I never asked for reports or asked questions I don;t want to bother these Drs. with foolishness.
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camillegal Trial phases all do different things. First phase I believe is to see if the drug works/safe on humans. 2nd trial is to figure out the dosage. 3rd trial is a larger group to see if it is really that effective. Not sure if that is correct but you get the idea.
On the trials that doesn't mean you aren't getting treatment. Typically if a life/death situation are usually done on people who have tried everything else (in case of cancer stage IV) before it ever goes to trial on early stage. On early stage the women do get standard treatment and the drug/placebo. It doesn't mean they are treated.
So in a nutshell getting the placebo is just like those who aren't on the trial at all. Still treated but not with this addition of the new drug that may or may not work.
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Camillegal.....I think you should ask for tests for anything that is concerning you! I will for sure! I see my once on Friday, not sure yet if I'm starting my chemo or being prepared? I know I'll get a confirmation call probably tomorrow, they'll tell me whether or not I am! Good luck to you and definitely put your mind at ease! Ask for the tests!
Angie:)0 -
cypher - ALH = atypicallobular hyperplasia, the precursor to LCIS, and ADH = atypical ductal hyperplasia, the precursor to DCIS. I had DCIS and IDC in the right breast, ALH and ADH in the left. The stuff in the left was never detected on any imaging (mammo, US or MRI) so I have never regretted having the BMX - glad to have it all gone. My positive nodes were not seen either, so imaging is not my friend! I don't sleep either, didn't before BC. I used to work second shift in the hospital 3 pm to midnight - this would have been several years prior to dx (when they say BC starting forming) - and it really messed with sleep. I would finally fall asleep around 4 am, then sleep until 10 am.
camillegal - ask for copies of the MRI reports from you doc. If you have a fax machine they can fax them to you, or just mail them. You have a right to know what the reports said. It the imaging did not show the full area then you can ask for another scan. The trial I participated in had two arms - the vaccine arm and the placebo arm. However, the placebo was also a drug. It was an immune stimulant similar to Neulasta. That was one of the reasons I did the trial, I knew I would get at least one beneficial drug and hopefully two if I also got the vaccine, along with advancing the science of vaccines to prevent recurrence among Her2+ BC patients. It was a win-win!
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Cami, thanks for your nice post! DON’T you DARE worry about being pushy!!!! If you think they might have missed something and they should look again, then you should tell them to look again!
Re the trial, 50-50 chance I’m actually getting the drug. Also, women before me have become involved in clinical trials, and the results have helped me. Lago’s summary is also helpful, as usual. The “P” (perjeta/placebo) is in addition to the full monty.
CTRL, what a great attitude you have!
SpecialK, thanks for your response. Ugh it always frightens me to hear about stuff the scans missed.
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cypher - that is exactly why I did the BMX instead of the recommended lumpectomy - didn't trust the imaging to see any new problems. I have more faith in scans, just not mammography for me personally. The tumor was plain as day on ultrasound but they were not sure what it was, and the abnormal cells of ADH and ALH are much harder to see. I also felt a responsibility to do the vaccine trial because of the ladies who went before me and brought Herceptin to the market - I benefitted (hopefully) from their participation.
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Cypher!
Good to "see" you. And thank you, thank you, thank you! You kinda answered a question/concern I had...
For the last few days my pee smells like rubber, or like protein drinks (but I haven't partaken)! So I'm thinking, oh great....what's up with that?
You mentioned your pee smelling like asparagus without eating it...well I've been eating A LOT of it. I love it raw....keep it cleaned and hanging out in the frig so when I want just a little something I grab 5 spears and nosh.
I had no idea (because I've never really snacked on the raw stuff until recently...it is GREAT with hummus!) it could change urine odor.
But I am so glad you posted that because it obviously does, and now that I think about it...that is exactly what it smells like!
As for the kale. All things in moderation. Though if you have a sluggish thyroid, you might want to limit uncooked cruciferous veggies.....
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Cypher, I would have loved to be on a clinical trial, but I was rejected from the metformin trial, and I wasn't in the right hospital to do the TCH/P trial when I started chemo back in Sept. I tried to get the perjeta added to my herceptin infusions, but no MO would agree to add it, since it isn't approved for early stage women. From everything I've read, I'm convinced that 5-10 years from now, perjeta will be used in early stage women the same way herceptin is now. I consider you lucky that you are possibly getting it!!SpecialK, I had similar situation and am very happy I did the bmx. I opted to do a bmx even though I supposedly only had cancer in my right breast. The post surgery pathology of the "clean breast" showed atypical cells, which would have meant I would be back in this situation in a few years had I not have both breasts removed now.
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Lago: What is the probiotic you take for Gerd. I tried to find it at the health food store and there are so many, I was lost. I'm thinking it might help my hubby. Thanks, Arlene
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Arlene I take a probiotic enhancer called Nutra Flora recommended by my gastroentinologist years ago. I don't use the brand he recommended anymore because it's no longer available so I use the Vitamin Shoppe brand: linky I get it in the powder form and either mix it in my water or yogurt. Completely tasteless. But I don't know how that would help Gerd. Its more for colon health. I have IBS so it does help.
For Gerd, when it was really bad the only thing that worked for me (forget prilosuc and protonics) was Carafate suspension (prescription). I also found that Nexium would sometimes work. Most importantly he can't eat too close to when he is going to lie down/go to sleep. Also avoid acidy things before he goes to sleep like tomatoes etc. Soda or anything bubbly will also upset things. (I gave up soda). chewing gum can give him added gas. I never drank coffee but I hear that is bad too. These are things that if he must consume, consume earlier in the day rather than later and in extreme moderation. Granted he probably knows this already.
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