TRIPLE POSITIVE GROUP
Comments
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Vicky - congrats on your milestone! Celebrate!
Tres - I suggested that my RO make my tattoos into little bitty hearts! Some RO's have no sense of humor nor hearts as yours well showed. If you don't get them removed or covered, which I hope you do if they bother you, they do fade eventually. Mine were very blue at first but I'm hard pressed at find them now.
Deni - I recognize those hills! We live in Pewaukee. Do you sell your wine commercially or just for your pleasure. My friend's hubby has had bee hives for years. Locally produced honey is great for allergies.
Hap - while I love obtaining new information, perhaps the New York Times article would have been better posted on another forum. Because we are Triple Ps (thus the reason for this special thread) I would hate for a newcomer here to get the wrong idea.
Suburbs - so extremely glad you are on the mend.
Special - as always you make sound understandable points. Besides that I would not want the manufacturer of a drug have too much control. They already have enough which is why our healthcare system is in trouble. I qualify for Medicare next month & bought every imaginable supplement but I am still worried about what will change in my previous great coverage. The price difference between my supplemental & my hubbies was enormous (our other healthcare issue)!
We are in the Low Country...specifically on Seabrook Island in South Carolina. It is absolutely beautiful here. I am enjoying all kinds of new foods & have developed a love of fresh grown peach tea. SC actually grows more peaches than Georgia and has the only tea farm in the US. Can't wait to tour that. It is hot here so we've been living on newly retired time - slow and easy touring....then hit the beach!! If I can figure out how to post pictures I will post one of the moss draped gnarled oak trees & the gator in the pond behind us!!
Have a great week all! Juli
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hap - it is incumbent upon oncologists to determine whether chemo is appropriate for their individual patients, not drug companies. Just because drugs are available doesn’t mean 100 of cancer patients should receive them, and they certainly don't at this time. Fewer breast cancer patients receive chemo now than in the past thanks to genomic testing and a better understanding of the disease process. Refinement of treatment processes and the decision making rubric is incremental. The recommendations now are different than when I was treated 8 years ago. And, no, I have not worked in the pharmaceutical industry, but I appreciate that their products saved my life. My statistics for survival without treatment were not as favorable as yours, so my outlook differs. I believe Juli24’s point about The NY Times article is that the results of the study are not applicable to those of us who post on this thread, due to our TP diagnosis.
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Hap, this is the Triple Postive Thread - that article does not belong here.
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As if things weren't bad enough for new participants, being inundated with scathing reviews of treatments, particularly Herceptin for obvious reasons since for most it's a requirement, and trashing the only system we have presently in the U.S. creates a hostile environment here on the board for new people. I don't have to live in a place where most people read the Times to figure that out.
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Hap, I had already read the article. Again, that link should have never been posted here.
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Yes they do have oak trees in Wisconsin Hap although I believe you know probably know being the educated person you are. As you so often put it - if you don’t like my pictures of South Carolina oaks with moss just don’t look at it. I also completely understood The NY Times article since I am a lot more educated than just having a one degree. I stand by my comment that the article doesn’t belong here.
On a kinder note, and I mean this seriously Hap, have you ever considered being evaluated by a professional for anger and depression? So many women, with just one cancer diagnosis (I happen to have had 2 by the way), suffer needlessly from undiagnosed stress and illness induced mental issues. Often the people they interact with recognize the symptoms even before the patient does. Denial is common again leading to prolonged delay in getting help and suffering. A common denominator is the inability to let go and the need to always be right to the extreme of having the last word trying to prove their point. For all I know Hap you are a very happy go-lucky individual and I might be totally off base. I truly hope this doesn’t ring true in your mind. If so, I apologize sincerely. If not please do yourself a favor and at least check it out. I’d be happy to get you more info should you so desire. In non-judgement and compassion, Jul
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Stop playing the victim!
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LOL Hap! You just don't get it. I am not angry. Anger is a waste of brain power. I do live in Wisconsin BTW. I also stand solidly by my comment that the NYT article does not belong here and that seems to be the general consensus of the board participants. Since that seems to anger you, I respect that, but you are the one who edited in a nasty self promoting fashion. Enough already!
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Hap, perhaps you could start another thread on this subject matter. Your other thread has reached out to many people who are very interested in your topic and they say they are so happy to have found your.
We need to think of the newcomers! They are so vulnerable and desperately seeking info and support. I'm really having a hard time with this thread.
Again, think of the newcomer.
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HapB,
I think the point that everyone is trying to make is that the article in question is not particularly relevant to breast cancer patients who are diagnosed with triple positive breast cancer. This is a thread devoted to such patients.
I'm sorry that you perceive those who point this out to be engaged in negative attacks and hostility.
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Hello All, I'm pretty new here and I thought earlier if this triple positive thread doesn't turn more positive it's time to turn off breast cancer.org. I'm on two threads with you Hapb and you can be a little difficult. I'm sure you don't mean to be unkind. I've offered encouragement to you but I must say my peace before I exit.
It's very unkind to keep belaboring certain points. When I first came to these threads it was to gather strength, information and implement helpful tips from others who have gone before. It never occurred to me we would be attacking each other's choices or implying others are stupid to cooperate with the only options we currently have!!! God knows everyone with cancer would love to hear, no chemo, no Herceptin, here's an easy way to get rid of cancer instead! But the reality is we don't have any other way to battle just yet!!! Arguing about whose fault it is that we don't have better options, trying to place blame or just be down right depressing, has no place here! It adds frustration, confusion, fear and doubt to a situation that already overwhelms each of us with these emotions. Please take a deep breath. Accept where you are and do your best to survive while allowing others to do the same. Please don't take this as an attack. It's more of a plea to think about the way you're projecting your own frustration on others. God be with us all.
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Tres - my tats are like yours, very apparent 4.5 years later! You might want to have a convo with your MO...mine (and my NP) told me to go ahead and have them removed. Perhaps your derm isn't clear on this? Might be worth a check?
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Tres - I would def check with your MO, it may be that your derm is making an assumption that is not in line with your MO and/or RO's thoughts. I did not have rads but I would also think that your planning CT and sims would be able to show the rads targets. If they can't radiate the same location why would the tattoos be that critical?
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I’m very confused about the reaction of the NYT article, which was, btw, on other news sites. I realize it doesn’t apply to TP-ers, but I can’t see how posting the link to it hurts anyone, even newcomers. It’s more information about the war on breast cancer and follows a trend of de-escalation of treatment of cancers in general.
There are lots of topics discussed here that aren’t specifically relevant to TP. I can’t figure out why this topic is prompting such a negative response. My reaction to it, I am almost ashamed to admit, was one of simple jealousy.
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I am so scared not to do chemo. I am 1a no lymph node but HER +. Only 3cm. Lucky to catch it early. BS thinking Herceptin and rads. Meet with MO this week. Surgery was easy lumpectomy and all clean margins. Will likely go for 2nd opinion MD Anderson. This last study appears promising re no chemo for early stage HER2+. Can you please se d the link ? Many thanks. Appreciate you all on this board
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I think this is the link you want, TTW: https://clinicaltrials.gov/ct2/show/record/NCT02689921?term=NEOADAPT&rank=1.
As you can see, it is a very small Phase II study and the results are not yet available. So, I'm guessing it won't provide you with the information you seek.
The protocol for the study was implemented prior to lumpectomy or mastectomy and looked for PCR ( Pathological complete response) at the completion of the neoadjuvant therapy. Someone like me, who had a lumpectomy first and then did therapy (adjuvant) would not have been eligible for this study.
Good luck with your MO appointment. Once a treatment plan (with lots of questions and concerns on my part) was decided upon, some of my initial panic subsided. I hope you find that to be true, too.
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There should be no confusion- herceptin has been shown repeatedly to be more effective when given with chemotherapy and that's why it's not given by itself except in unusual circumstances. Hopefully one day one of the studies finds a combination that works effectively without it or a newer drug is developed.
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1Cupcake2018, thank you for sharing. You expressed in a much better fashion the same feelings that I have about the board. I am still in active treatment. I am not ready to debate the evils of drug companies and the failures of the FDA. I feel like I am being bludgeoned with an anti-Herceptin debate. And yet, for most of us, we have a year of Herceptin in our treatment plan. Prior to 2006, we would have had to wait to become metastatic to obtain the benefits. That is a fact for early breast cancer TPers.
I am a not raising this issue to complain about one post. If I had started this board recently, I would run for the hills. This used to be a helpful and supportive place. I think it can be again. People are not objecting to one post. They are objecting to a constant barrage of posts raising doubts about the only treatments we have currently. We're not idiots putting our head in the sand. We are trying to get through these treatments without wanting to jump off a bridge
I agree with the suggestion to create other threads. Include the failures of the medical system in the US and provide those daily reminders of the evils of Herceptin and chemotherapy.
Finally, thank you SpecialK, for your infinite patience and command of the facts.
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For anyone interested,
Topic: Triple Positives staying Positive through it all
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Yeah, HapB you are beating a dead horse. Everybody knows at this point that you've had problems with chemo/herceptin/AIs. We get it. However, the fact remains that the benefits of all these therapies FAR FAR FAR outweigh the risks, and there is nothing more effective at keeping our triple positive cancer at bay at the moment. The second someone comes up with a side effect free, 100% effective cure for breast cancer I will be all over it. However, in the meantime, I see no reason to keep trying to scare people away from seeking effective treatment.
And I agree that an article about Her2- women not needing chemo is misplaced in this thread. Good for them, but it applies to literally nobody here. You might as well post an article about Diwali.
FWIW, I fully support anyone who chooses to go the no chemo route. I have to drag myself into that chair every three weeks and it only gets harder. It just isn't a choice I made for myself considering my age/stage/receptor status. When I first started with this cancer thing we thought I was Her2- and I was all gung ho on the no chemo bus, but alas things have changed and unfortunately chemo is my best bet. Wishing things were different does not change the fact that chemo + herceptin + AIs is the best we've got at the moment.
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I have found great support and information here. That said, i was reading NYT yesterday and came upon the article and saw that it didn't pertain to us TP ladies, but still found it fascinating and hopeful. When I was first diagnosed my BS thought I might not need chemo,only Herceptin. A higher than gray area Oncotype changed that. For that background alone about chemo being standard,I found the article interesting and applicable to me. I tried, unsuccessfully, to figure out how to post the link here, but now feel shunned for even thinking you sisters might also find it worth reading
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jstarling - there are already half a dozen threads here on BCO about the TailorX results, all started within the last few days. I don't think you need to be worried about posting the link - it is available in a post above, and elsewhere in the Active Topics list. Since OncotypeDx testing is not done for those who are deemed Her2+ from their biopsy sample, which most of us are, the test is not what determines whether Her2+ patients need chemo or not. I think we all can celebrate for those in the future whose OncotypeDx scores fall into the intermediate area and now will have more information about whether they can avoid chemo - it is a win for sure in that regard!
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I refuse to back down from my previous posts. I am not objecting to one post. I am objecting to the sum total of participation here that provides unfounded statements and conjecture about the medical system and everything about it. I find this situation to be toxic. Everyone is entitled to their own opinions. Before we "move on" let's agree to have some compassion for others and not just our own personal crusades.
HapB, it's not just what you say, it's how you say it. There is a thread of superiority as well as snide remarks about those who bury their heads in the sand. Hiding behind the NYT and geography does not make things ok. It's another example of the very point I am trying to make. I do not offer my opinions as personal attacks, rather, I offer suggestions that might spark some self awareness and common sense.
When anyone addresses the elephant on the coffee table, they are accused of being ignorant, then nasty and offering personal attacks and then they are silenced. HapB, you have had your say, and now, I have had mine.
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Lita
I understand jealous.
When I read someone is getting 800cc implants, I do have implant envy!
I think those are normal feelings / reactions when on a cancer journey.
Vicky
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Hapb,
I just want to say thank you for all your posts. I appreciated all of the nutrition articles you posted and am following the thread you started. I also wanted to say that I appreciate your posts on Herceptin. I don't post very frequently but I had a very hard time on Herceptin (no heart damage that I know of). It was nice knowing someone else was having a hard time on it, because everyone acts like it is so easy and it was not for me. I had a reaction to it at the initial dosing and it made me sick every three weeks for an entire year. It was a long miserable year but I knew I had to do it. I always felt the oncologist office blew off my comments about it making me sick, and it was reassuring to know there were others who had a hard time. I am bothered by some of the comments I have seen, and just wanted to let you know.
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Dear Members,
We have been following the recent posts about the link to the TAILORx results and all that surrounded the ensuing discussion. Here is BCO's write up as well: TAILORx study results, and hope this is helpful. We are asking that you move away from this issue so as to get this important thread back on track. Please remember that you have the ability to block users/topics/forums as you need to to ensure your continued ease to be active in this community. We appreciate your understanding.
The Mods
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Lsambo. I wish I was the welcome wagon bringing goodies to your front door and welcoming you to your new neighborhood instead of welcoming you to our group, but nevertheless here you are...welcome.
I can tell you that when I was first dx'd in February of 2017, I was scared. Afraid of chemo and the side effects and fearful of what was to come. So many questions. I was told by my physician NOT to use Doctor Google because he has a habit of giving horror stories so, I didn't go there, instead I listened to a cancer survivor and came here to breastcancer.org, this was the best move ever. Strong, confident, educated and loving women holding my hand and guiding me through this detour. There is laughter here and tears. We vent and we rant and we offer our support. We give tips to make it through the tough days. The tips we give (like Claritin) help many of us but, not all of us. What works for one with our finicky taste buds doesn't work for another but, we come together and try to help. You CAN do this and you WILL get through this. I strongly encourage you to ask questions about anything that just doesn't make sense. Walk, hydrate, keep moving, pray if you're a prayer and ask for prayer if needed. ************************************************************************************************************************************************
I am pasting a message by me from an earlier post to someone else...it still holds true for me today.:
I too believe (like you) that being positive helps you during treatment, recovery etc. I visualize each of my organs as healthy and cancer free. Some may laugh but even when I say my prayers I thank God for a healthy right breast, healthy lungs, a healthy liver (and I see it in my minds eye as red and healthy) etc. I am not a religious fanatic and never have been one but, when I was going through chemo I visualized Jesus taking the poison chemo into his body and releasing it into my body as a supplement/vitamin to mine. Yep, I did just say that.
Speaking of future events (healthy body, no mets, no reoccurrence) with as much certainty as though they were already past.
I am pretty positive all the time and my one daughter has looked at me as a bit crazy when I seemed to find the silver lining in some of the worst circumstances. It is easier for me to live - looking for the good in things, that is. Am I perfect at this all of the time? No. I could have been a wench when all of this sucky stuff happened but it would have made everything so much worse.
Some may look at my positivity as unrealistic and I look back and feel it's the only way to go on living each day after a dx like I have had. I can live each day in the moment or worry each day and ruin every moment of every day. I choose life.
So, I leave you all with this one thing. Have you done one kind thing today to help make someone's day a better one?
Lsambo......YOU GOT THIS!
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TTW - the clinical trial Tess provided the link to is the one I participated in! I understand your anxiety about not doing chemo; I had the same concerns but my MO assured me I would be closely monitored and if the tumors did not shrink, I would then be switched to standard of care with chemo. I had Herceptin/Perjeta every 3 weeks for 6 months, then a mastectomy. I'm also on an AI every day for 5 years. I had a great response and within 3 months the tumors were not visible on MRI. The pathology at surgery was great also - only a few remaining single cancer cells were found in the breast tissue removed. I did not need radiation.
Clinical trials are not for everyone and a very personal choice. I felt confident in my choice because my Mammaprint indicated I was low risk for recurrence. I am personally opposed to chemo and felt this was a good option for my particular situation. That's not to say that I wouldn't do chemo if I had to, but I really wanted to explore other options. I'm very happy that I participated in this trial because if I can do anything to ease the suffering of other BC patients then I'm all for it.
Feel free to send me a private message if you want more information on the trial.
I wish you peace with your decision. Hugs,
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Juli24 - hello neighbor. We live in Erin surrounded by beautiful hills. We are very blessed, this is my place of serenity.
I have been to Seabrook Island and recognize those trees. Absolutely stunning. Enjoy the rest of your time in Low Country!
Shelabela - have fun at your new boobs party! You have great friends0
