TRIPLE POSITIVE GROUP
Comments
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Hap - you are 4-5 months behind me. My Lx was in Dec. and I started chemo in Feb. (brachytherapy in between). So I'm not surprised that you haven't gotten any bills. I just saw my April Medicare one which came with several previous months. So far, I have paid NOTHING for my treatment, just co-pays for medication.
Teva is a manufacturer of a generic AI. I know Walgreens carries it but I had to ask for it. My first 90 days also gotten at Walgreens was manufactured by a company called "Accord." Several on the AI site have noted that they have experienced fewer side effects than with other generics because of the different "fillers" used by each company. That makes sense to me. My neurologist wouldn't let me take a generic of a particular seizure medicine I was on because of the fillers. After he switched my medications, he was perfectly comfortable with my taking a generic (and was it a huge savings!) As I recall, I paid under $30.00, $28.00 maybe, for 3 month supply of Teva with my drug plan issued by AARP with United Health. I don't remember what I paid for the first 90 days so it couldn't have been much. I have felt better during the second 90 days but obviously can't be certain it is the drug switch or that my body was getting used to the drug or that I was farther out from surgery, rads, and chemo. If you haven't been there, check out the AI thread. (I must admit I don't always remember who I meet where as I am on several threads here and my chemo class established their own private Facebook group.)
Have a good weekend, everyone. Still over 100 with lows in the 80's here in Phoenix but at least for this week "it's a dry heat."
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Hapb, I drank alcohol. So it's easy to make a list of 'sins' and be hard on myself. But while hormones are of course at the foundation of this cancer, I can't believe that taking a low dose pill on its own did this. I guess what I'm saying is that it's very complicated, we all have a unique genetic map, and there are so many factors. For the lifetime smoker who gets lung cancer, three is thar direct link to smoking. I don't believe it is that way with breast cancer
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I do believe in the "perfect storm" reasoning. A combination of factors set the stage that allows cancer to grow. My dx came a couple years following a stressful period at work, the death of my father and a miserable menopause. Just like some bc is related to the hormones of pregnancy, I think mine was related to some wacky hormones during menopause. At one point, my ob-gyn had my estrogen level tested and it was off the chart high, then a month later back in normal range. I also had a breast injury in the exact area of my tumor a few years before dx. Is it all related or just coincidence? Who knows.
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posey...i just want to clarify my post. I wasn't saying that my BC pills caused my cancer. I just meant that my hormone positive cancer was being fed by them. I just wanted to clarify. No one should feel guilty about anything they have done! It's just bad stupid luck :-( I hope I didn't upset anyone....
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Tresjoli,
Nope! I understood you perfectly! I know you said it fuelled your cancer and I agree with this reasoning. We have a similar background in some ways...
My strong belief is that it's a combo of things and -yes- absolute crap luck!
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thx Posey!
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I don't believe in "should-haves," "would-haves," and "could-haves." Since 2014, breast cancer became my new reality and that's what I have to cope with NOW. There's no sense in beating ourselves up about prior behavior or choices that might have contributed to breast cancer.
All I can change is how I react to breast cancer NOW. I can't change what I might have done to get in this situation in the first place. So, that's what I focus on.
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I keep following your discussion on this subject regarding the pills and postpartum bc. Now I also red on the web about it, I had no idea that the risk was so high, no one ever told me that, I never googled it before either when I was trying to conceive after 40, I just thought I could do it because I did not have any problems to conceive earlier. It also says that prognosis for postpartum is not good. I know there is no point but I do blame myself, I wish I would had let it go, sometimes I even did say to myself it was enough, I had my two children, but I always came back to that I just badly wanted another one. I also got prescribed birth control pills in December but saw that bc was one of the risks and decided not to take those. If I had, I would have now thought that it was the reason behind my bc. However I was pregnant and developed this lump within 1-2 years of my pregnancy, which one of them caused it I do not know.
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Here is some info regarding breast cancer risk and oral contraceptives. I don't think any of us should assume that we know what has caused our breast cancer, it is too simple to draw a straight line between one possibility and one result.
http://www.breastcancer.org/research-news/study-qu...
https://www.cancer.gov/about-cancer/causes-prevent...
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I have been thinking about this a lot since I got my diagnosis and started to read about bc and all possible cause. I know it is pointless but some part of me wants to understand, I do not know why, maybe my mind is trying to cope with bc or any other problem in this way in order to get some closure. I just wonder (did not find on the internet though) if ER levels during the early pregnancy and those while taking birth control pills are the same? Is it possible that I had still got Her2 positive but hormone negative cancer if it was not for those pregnancies or if I just could avoided the whole thing. On the other hand I used to read a lot on the forums where women over 40 were trying to conceive over time, some taking ovulation pills, some going through the fertility treatments, all possible kind of supplements. Some of them had several miscarriages behind them. None of them had ever came back to the forum and said now I got bc. It is bad luck as my onc said.
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Just added my post, my grammar is terrible, I am not a native speaker and have to read through several times before I post. Have also a tendency to express myself in a stream of consciousness manner
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I've been off this page for a long time, so I hope my question hasn't already been answered, is anyone on the new (FDA approved July 17) Her2, post Herceptin drug Nerlynx (neratinib)? My MO thinks I should try it and I have a ten year old and 13 year old twins, so they need me, but the side effects sound like chemo and I do not want to go through that again (Nausea, Diarrhea, Nail issues, fatigue, etc). But, I also don't want my cancer to come back, because if it did I'd be back in full chemo. I'm very conflicted right now.
Also, can you do a search within a specific board? I would have done that, but I don't see that option. I searched on the home page and just got all the articles from Treatments and Side Effects, nothing from the forums.
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I am going to ask my MO about nerlynx when I see her in September. Not sure if it's worth it.
I really am sorry about my earlier post everyone. I in no way think that anyone does something that gives themself cancer. It's just bad luck, a mutation that can happen to anyone. I was just trying to relate my hypothesis about my own personal situation. I do believe I had PPBC and so does my MO. But it's a hypothesis only, based on a very unusual set of circumstances, with no solid research to back it up (research is just emerging).
I love all of you on this board dearly and find this place one of comfort and support. I didn't mean to take us off track with our discussions. I don't ever want anyone on this board to think for even one second that they did something to cause their cancer. No way...
Hugs!
Pamela
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KNM, interesting. I haven't heard of this new drug! I'm in Canada and that means we'll be behind on this, but if I were a candidate, I'd get my butt down to the US and get it. I personally have zero conflict over it. It's such a personal decision, but my own view on treatments is 'balls to the wall'
Re: our postpartum discussion...I think it's pretty clear that our hormones are responsible for the cancer, but like SpecialK says, it's very complicated. As a good friend of mine said (who has not had cancer) said: "look at me. I have several risk factors. I'm turning 50, am overweight, I drink, I smoke, I've never had children, and have a bad diet right now with little exercise".
Bottom line is that it's so natural for us to run down the list and fixate on the past. I still get caught in that zone and it just stabs me in my heart. But I also realize there is no point to this. Most women have a few of the risk factors. And I know many women who started having kids in their late 30's to early 40's. It's so damn easy to walk this path. But 50 percent of people will get a cancer.
Elainethere, your message is vital, and I need to focus on that. None of us did anything wrong. We just need to do our best now.
And Cherry, a quick clarification re: postpartum bc...it's a more poor prognosis if the cancer has spread. The theory - I believe - is that in that pregnancy and postpartum period, hormones are so elevated and cancer cells can quickly disperse from the original tumour. Looks like you are extremely early stage
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tresjoli, stop!!!
you did NOTHING! I am the one that took a tangent!! You never suggested that we caused our cancer!! I just spoke of my demons on that.And as for a conversation going off track, there is no 'off track' I thought. I feel welcome to say whatever is on my mind and know I'm in good, caring, resourceful company here.
So stop it, you!! ;
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ok ok ok 😀
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Posey I see my MO on 9/8 And I'll let you k ow what she says about this new drug Neratinib (Nerlynx). It go approved in the US in July and I believe is available in september.
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oh, I would so appreciate that...thank you xox
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Hugs back to you Pamela. I actually appreciated reading responses to your post, as I too have ruminated over causes and "what ifs." So reassuring to hear others' well-articulated thinking. Thank you everyone!
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Tresjolie, I am glad I can discuss everything here, I have been thinking a lot about PPBC before I found this forum. I cannot discuss it with many people, I do not know anyone who had bc, I know few people though who had miscarried or had babies recently, but I cannot tell them that I believe my cancer had anything to do with me trying to have a baby with no luck. They will just think I am mean. I can only speak about it here or follow you who in a way went through the same thing. It was very interesting.
Cherry
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kmntwins
You are pretty far out from having had chemo. Below is a link to a very lengthy paper on Nerlynx. I know there are some on here able to decipher all the scientific mumbo jumbo, but I'm not one of them. I did however note the following passage:
"In clinical practice it is likely that neratinib will be sequenced shortly after the completion of adjuvant trastuzumab. The results of the adjuvant trastuzumab studies suggest that patients are at a higher risk of recurrence closer to completion of adjuvant trastuzumab, and the risk of recurrence may decrease over time."
With your stats, the risk of recurrence were already low and your risks decrease the further out you get from treatment without a recurrence.
I will be interested in seeing what others have to say about this new drug and if MO's all start recommending it. The last time I saw my MO was in June, so prior to this being approved.
Here is a link to Nerlynx
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aww you guys rock. It's like being wrapped in a virtual hug. I would be so lost without this board!
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PoseyGirl, of what I red in one study on bc connected to pregnanc (in Korea) on the web there was no particular condition on whether the nodes were positive or negative. Instead it said that those who was diagnosed postpartum had worse prognosis then those who were dianosed during the pregnancy. It was not explained why, I do not understand what is the difference but it might be as you say the more into the pregnancy the higher the hormone level is and after delivery it will be a havoc which can cause a bc. As far as my diagnosis is concerned, the tumor is 1,5 cm, I am highly Her2 positive and have high Ki. Besides I an getting paranoid and do not trust the doctors, feels like they do not want to burden you with any detailed information, I have to dig it up myself in order to be able to ask the right questions. And when I do I see it bugs them they start to look at you like oh, you are one of those. What I am trying to say is that I do not know how accurate the stage diagnosis can be If they only base it on SN surgery. It is still an IDC and it has vascular strukturer so the cells are in the blood and they say they cannot check it, at least what they say here, and that is why I have to do chemo. They do not do any scans and they told me they wouldn't until there will be any symptoms. I saw several profiles here where people were misdiagnose in the beginning and they had small tumors and no involvement. I understand these are the rules of this game, but I still have hard time to accept all this situation. Exactly as you said, like stubb in the heart of completely pointless regrets. I am so glad I can read about everything here and pour out everything I bear inside. A few days ago while in the shower it hit me what would I have done If I had not foundthis forum? My first thought was desperation,total lonliness. And the second thought was oh I would have sooner or later, I was after all turning the web upside down for info. Cherry
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Soxfan - sorry I don't post very often either but wanted to weigh in on the Perjeta. I have been getting Herceptin and Perjeta for a full year as part of a clinical trial. I have one infusion left. No major side effects other that fatigue and dizziness for a few days after. My insurance has paid for both drugs.
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coach Vicky congrats on your last infusion! I am so happy for you!
Specialk you are amazing thanks for all the great info. I'm especially interested in the info regarding nutrition, here I thought a plant based diet would be better but there are flaws in that too! It's just so darn hard to know what to do with some many different perspectives out there. Thanks for sharing specialk I feel your info is the most reliable
Posey I think the anxiety and fear does ease up somewhat but for me it comes and goes. I am almost a year in and feel much much better than when diagnosed but I have days where I get myself worked up about recurrence.
I have to constantly remind myself one day at a time and stop trying to predict the future lol
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Hi Everyone,
I was recently diagnosed with breast cancer. Caught very early, grade 2. I had a lumpectomy on July 13th and they did a biopsy on lymph nodes. Doctor thinks they got everything and lymph nodes were clear. They haven't told me a stage, but according to the standard definitions, I think it would be stage 2. I'm triple positive. About two weeks after the lumpectomy I got Cellulitis at the lymph node incision site. That totally laid me up and brought me down when I had been staying so strong and positive up to that point. Now that the infection is gone, I have my first appointment Monday with the medical oncologist, and I'm very afraid. Throughout the whole beginning of this ordeal, the surgical oncologist didn't think I'd need chemo, just radiation and hormone blockers. However, because of the HER2, I'm concerned that I might need chemo. The messages at the beginning of this group in 2011 seem to indicate that chemo is a given with HER2. What is the latest best practice? I know I'm putting the cart before the horse, but I really don't want chemo.
Thank you,
Danna
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My husband called my MO to ask about the new drug Nerlynx. My MO said that they had lengthy discussion in their group and they were surprised that this drug was passed. He said that the improvement in preventing recurrence is too low in comparison to the possible side effects. He was especially concerned about liver toxicity. All in all, he doesn't think I would benefit from this drug.
I'm curious to read about others' MOs and their decisions regardingthis new drug.
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Thank you.
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BBwithBC - my MO said the same as yours i.e not worth the side effects for the minimal
chance of reducing recurrence.0 -
Dannajae - sorry for your diagnosis but you'll find a lot of support and helpful information here. Standard of care for HER2 triple positive is as Hapb mentioned, chemo and HP, hormone blockers. I've been in a clinical trial without chemo and getting Herceptin and Perjeta for 1 year and will be on AI (Letrazole) for 5 years. You are the only other person I know besides those in my clinical trial where your MO did not recommend chemo.
My cancer has been eradicated with just the HP and taking the daily hormone pill. My MO ordered a Mammaprint test to determine my risk for recurrence, maybe you could inquire about this test with your MO? Standard of care doesn't have to be the only option but you should be prepared just in case. Treatment depends on many individual factors as our bodies are all different and respond differently too.
Ask lots of questions and get a second opinion if you feel the need. I wish you the best with making your treatment decisions. Take care
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