TRIPLE POSITIVE GROUP
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TonLee when I asked the RO fellow where my Mardi Gras beads were he looked at me like a deer in headlights. The female RO fellow chuckled. Then the RO came in and gave me a pass on rads. It was a good visit even though no beads!0
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Here's an interesting article that just came into my inbox. It seems to be most applicable to the newly diagnosed...looks like some are starting to do a Ki67 at biopsy and then treat with Tamox for 2 weeks, do lumpectomy/MX and then test the tumor for Ki67...and use that data to determine responsiveness to Tamoxifen. I only scanned the article, so I may not be summarizing it 100% correctly, but that was the gist I got from it. I'm sure this is really new with lots of questions to be answered and kinks to be worked out...but it's the first time I've heard of this and thought you all would find it interesting, too!
Prognostication and Prediction for ER-Positive Breast Cancer
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This article just came into my inbox. This is the first time I've seen such a strong warning about Herceptin...most of the time they say the heart risk is low and reversible if it occurs. I am one of the "low risk" HER2+ gals, b/c my tumor is so tiny and treatment of it is controversial. It took a LOT to convince myself to do treatment. I am having some STRONG reservations about continuing after reading this. I hope I'm not scaring anyone (I tend to overreact when I first read something).
Trastuzumab Raises Cardiotoxicity Fivefold in Breast Cancer Patients
The review concluded that high-risk women with few cardiac risk factors would benefit from trastuzumab, while those at lower risk "must be carefully evaluated," adding, "The oncologist should share the decision with the patient concerning whether and how to start the treatment."
Dr. Lenihan said he was concerned that the potential cardiotoxicity might cause oncologists to steer away from trastuzumab. He is a proponent of a multidisciplinary team that involves a cardiologist at the outset of therapy.
If cardiac effects develop, "the key is not to ignore it, but to pay attention," said Dr. Lenihan, who is also president of the International CardiOncology Society USA/Canada.
Early identification enables rapid treatment, which can stabilize or correct the heart issues, he said. That allows patients to return to their cancer therapy.
Dr. Lenihan and his colleagues at Vanderbilt University are currently conducting a study testing various cardiac biomarkers to detect toxicity during chemotherapy.
It is still unknown, however, whether the cardiotoxicity that develops during therapy is ultimately reversible, or becomes a lifelong issue. While the ejection fraction may recover after withdrawal of trastuzumab, at least one study - the Herceptin Adjuvant (HERA) trial - has shown that some women had long-term loss of heart muscle cells, said Dr. Telli.
"So we know that the heart is taking a hit," she said, adding that the trastuzumab damage is not "some sort of reversible thing."
The key, she said, is for oncologists to weigh the risks and benefits individually in each patient.0 -
DanceT This is the type of stuff you need to discuss with your onc. One study doesn't make is so. Many of these studies have flaws. This also might be an opinion of 1 onc but not the masses.
I'm sure they are watching your heart very closely. Don't drive yourself crazy but do talk to your onc
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It's not one study. It's a Cochrane review of 35 publications that covered 8 randomized controlled clinical trials enrolling 11,991 women. About 7000 women were assigned to the Herceptin arm, 4971 were assigned to non-Herceptin arm. Median age 49. Metastatic disease excluded, preexisiting heart conditions excluded.
And you bet I'll be discussing it with my onc.
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DT, I guess my question would be what if I didn't get Herceptin, would I get recurrence, mets? That is a tough decision. There seems to be much to learn about this drug, but survival rates, of her2 vs heart problems after, seem to need more study. 6years of general use leave a lot of questions.
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I know moonflower. Which risk is higher? That's what I've been asking all along. I wasn't too concerned about Herceptin (relatively) until I read this. I think for those of us who are HER2+, node negative, with very small tumors, this Cochrane review should give us pause. Not jump to conclusions, but certainly not be ignored or blown off.
If I had a large tumor and/or positive nodes, the risk of cancer would be greater than the heart risk. Go for the Herceptin, for sure. I don't know what I'm going to do, but this is going to require some futher serious thought. I thought I was done with this.
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OK I got to read what you posted in detail. I was on the phone with a bc.org gal that just got some not so great news.
Anyway yes you are right. They know about this. This is why they watch you with MUGA or EKG. This is why as soon as they see heart function too low they stop Herceptin and decide if you should continue. There are folks that do get damage. It's a risk we all take anytime we deal with medical. TonLee can give you more info on this… but ask her. If she knew what she knows now would she still have done Herceptin.
But there are women here that have mets, no nodes and small tumors with HER2+… lots of them. HER2+ doesn't always spread through the nodes. There is still a lot they don't understand in terms of how is spreads.
I'm not saying you should do Herceptin. I'm actually saying given your diagnosis I don't know. Maybe it's time to get another opinion as well.
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I answered on the other thread as well, but I knew there was a chance I'd get heart damage....about 20% I think is what I read at the time..
Heck yes. I wouldn't change a single thing in my tx. Even though every month my heart does not improve it becomes more and more likely it won't, that damage is cellular and not reversible. Both Onc and Cardiologist confirmed this...and well, it is what it is.
One Onc told me in the beginning that Her2 cancer starts to grow, from the first division of cells, it gets a passport and packs a suitcase;loves to travel. When I was unhappy about it being in my nodes one of my second opinions told me basically...hey, over half the HER2 mets cases I deal with have no node involvement...at least you know it traveled.
It didn't make me feel better. But, it opened my eyes to how HER2 really is a game changer when it comes to how cancer acts. So 20% was worth the risk for ME.
Good luck DT...I think you've got some good information, valid concerns and questions to discuss with your Onc...please share when you get answers.
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Lago thank you for your input. I of course agree with all that you say, and I know all of that - none of this is risk-free. This article really caught my attention though b/c (1) it is a Cochrane review (2) it specifically notes that those who are "low risk" HER2+ should really look at this issue closer. Up til now the Herceptin risk had been really minimized in all that I have read and been told by my docs - only 4% of patients, it recovers most of the time, etc. etc.
I won't be getting another opinion b/c I've already had plenty. LOL However, I will be discussing this review with my onc to get his input, for sure.
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Thanks TonLee for your input. I will report back of course!
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Omaz - thanks for that article - great read.
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dance - member kittykitty originally posted it!0
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Omaz
Thank you for posting the article about the 10 types of bc. I read it carefully and my understanding is that further research is being done to understand why some Her2 women fair better than others.Hence, it is now too simplistic to say that Her2 is automatically a poor prognosis or indeed a good prognosis. The point is more work is needed (on the role of the immune system for example). According to the article TN had the least favourable outcome (for the original 4 subtypes) But even this traditionally held view is being re evaluated as many TN's fair well and of course post 5 years have an excellent prognosis.
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Thanks Jackboo9, I'll remove my post. I edited out that part, could you take it out of your post too? Thanks0
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Lago, that is really great to hear. Hope that's the case for me too. Ha, my last appt was with the plastic surgeon who opened my gown, stepped back to take a good look, felt around, then asked me to unbutton my pants . . . to see if the flap was even an option from the ab area. Ok, so it's not as creepy coming from a dr. but still!
Kayb, it's good to hear I have an option if the pain is unmanageable. I guess I will know before I leave.0 -
Ashla, I followed the advice given by everyone else and did well with rads. I was burned to be sure, but the Calendua cream put on several times a day helped immensely. Being large chested, I also used cornstarch under my breast; I put it in a clean sock and used this like a powder puff to keep my skin dry, fresh and clean. Sometimes the skin can 'weep' and keeping it dry helps avoid that. I wore tank tops under my bras to help with chafing and to keep my bras from being destroyed by the cream.
Good luck!!
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jackboo09 my reaction was the same as your when I read "Her 2 had the worst prognosis." At one time that was true but also it is true that just because you are HER2 doesn't mean automatic mets.They have know that for a while. I used to post this linky from Dr. Love's site: linky as well as the link the article references on the Komen site about Luminal A/B etc.
The bottom line is Herceptin IS a game changer for a significant amount of us HER2+. No it doesn't work for some but it seems to be working for a larger majority of us. I'm glad I got it instead of spinning the wheel to see if I really needed it .
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Lago - I removed that comment, asked jackboo to as well. Did you not see my post after jackboo?0
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I have one more Herceptin tx on May 11th. During chemo my blood was regularly checked to assess WBC, but I now havent had a blood test for a long time. I will ask for one next month.
The article posted by Omaz was really interesting and yet the same questions spring to mind. Why do women who have led a healthy life (diet, exercise, non smokers etc) go on to develop bc.Surely their immune systems are fully functioning to keep them in this fit, healthy state yet they still develop the disease. I had a look at Tonlee's post ooph scars pic. She is a case in point of a lady who is very fit and yet has developed this horrible disease. Sorry just venting. Grrrr!!!
Lago: Ive just re read the article about Her 2 and reoccurance. What are your thoughts on the paragraph about Her 2 and reoccurance rates in node positive women. The node issue is again, another controversial topic. As we know on these boards there are her 2 women doing well years out with both positive and negative nodes. I wish I had been node negative but from my reading being negative is no guarantee either. Also where do oncologist come up with the number of nodes per stage. As in: 3 or under- lower risk etc. Just pondering some unansweable questions.
Happy weekend to everyone on this brilliant thread.
Liz
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Liz (jackboo) They get these numbers by keep track of us women. If you have node involvement your risk for mets is higher but again it's not a given that you will have mets… as so many women with nodes don't. Even if it did travel hopefully the chemo/Herceptin/ESD or EBD kill/starve what ever cancer cell might have escaped. That is why so many women seem to do better with these treatments then without.
But I may be node negative but certainly not in the clear. Technically we are the same stage. Although I'm node negative, I have a slightly higher risk (a few percentage points) due to my tumor size. So the story isn't all about nodes
Kay my WBC were low for a while on herceptin (last checked 7months PFC). I kept getting colds even 10 months PFC. I don't know where they are now but I seem not to be catching these things anymore. Some of us take a bit more time than others.
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I didn't get sick during chemo but I assumed that was because of the nuelasta… I mean I was even eating sushi. I did get shingles 3 months PFC and the 1st cold just before my last Herceptin. The other cold was a few months after my last Herceptin. It makes sense though to ask your onc.
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Hi Lago I saw your post about recon. I am curious about the recovery time on nipple recon and implant replacement. I have one that is lower than the other and creates a concave appearance near the armpit. I am loaded with travel and only have about 3 weeks downtime until Sept. thanks
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To be honest the worst part of that was the fat transfer (had another round then too). I would think you would be OK if your PS give you the OK but no heavy lifting (suitcases). The nipple stuff was easy. By 3 weeks though you will still have to protect them and not smoosh them.
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Yes I keep putting it off because of the fat transfer. The stitches still hurt 6 months later, not in a rush to heal agin. Thanks for sharing,
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nmoss, I just had a lot of lipo w ith fat grafting, and I was really sore, but it wasn't bad. PS said I couln't do anything strenuous for two weeks, but could walk all I wanted. It was a different kind of pain for me. The kind that is based on a LOT of bruising and overstretching of muscles. I was really sore for probably 5 days, but really didn't do much with pain meds except at night as I can't get to sleep on my back. It seemed like after the five day point, it started getting better quickly.
I have become one with my compression garment. LOL.0 -
I should clarify "worst". I guess you can say I was uncomfortable to the touch but really not bad. BMX is far worse and remember I didn't take pain meds for either.
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What is WBC?
I will have my fourth and probably last at least for awhile herceptin infusion. After the fourth infusion, I will have my third echocardiogram. Since Herceptin I have strong constant PVC's. Anyone else have an onset of PVC's after starting Herceptin? My EF went down 15 points after my second infusion. This last infusion wasn't as bad as the first two, but I'm noticing more and more subtile side effects. It seems that I' fall into the 12% that have heart issues.
Since I am early stage 1a and NED the Herceptin treatment is only preventive treatment. I am hoping that the four infusions will have destroyed (or helped the immune to kill) any possible micromets that esceaped or seeded after the biopsy (3 months from biopsy to mx).
I do hope after stopping Herceptin that my heart will go back to normacy. My oncologist said it would and if it doesn't I will feel misled..
And...for those who can't take Herceptin ( dx with HER2+++) it may not be a game changer. I would like to believe this is a miracle drug, but I'm not absolutely clear it is as said it is still new and we're not sure of long term effects. I fear it to be one of the drugs saying if you have had these problems or someone die as a result of Herceptin, you mabe entiled to compensation...call XXX Lawyer ...
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WBC= White Blood Count
(((Evebarry))
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