TRIPLE POSITIVE GROUP
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thanks Hapb! There aren't any results published yet. Interesting question about the Herceptin, I will ask my MO at my next appointment. He has stated multiple times that the AI is more beneficial than HP because the HER2 feeds and grows off the hormones.
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you will find this debate in this link...it's a good article, and you're right that it was not a huge YES like Herceptin was. But because the difference did cross over into statistical significance, they ok'ed it...
http://www.fiercepharma.com/pharma/puma-s-nerlynx-...
Hapb, I am all for being aware of cancer causes and doing all we can to prevent it - you're so right. And yes, concurrent to that, being careful not to find something we did or did not do that has not been verified and beating ourselves up...I am trying!!
I admittedly know so little about the postpartum angle. I was diagnosed at 47 and I'm pretty sure the cancer had been there at least 1.5 years (based on scans and a biopsy 2 years previous). This means it kicked into gear after turning 45, not long after miscarriages. I do think the dense breast thing was a huge factor for me. I can't go back and change either of these things. Wishing Nerlynx had a better response, as it seems to be meant mostly for triple positive
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deni1661 - Congratulations on being almost done! I'm surprised my MO fought to get me this and even more so that the insurance company approved it. I don't believe I've seen any studies on the effects of HP for a year, so I'm a little concerned about long term issues. Have your doctors discussed this with you? My tumor was only 1.2cm and from everything I've read on here, it doesn't sound like they usually even give Perjeta to people unless their tumors are larger than 2cm, let alone give it to them for a full year. Believe me, I'm not complaining, but I do find it curious.
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Danna, I hear you, the thought of chemo is terrifying. For me, finding out that I needed it was my lowest point. I'm sending you a big hug and strength.
I am at the end of my chemo now and it is manageable. My diagnosis is similar to your and I have had the "standard care" of weekly, low-dose Taxol with Herceptin. Yes, there are side effects but it is tolerable. You'll find lots of support and info in these forums. Just know that you can do this!
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The clinic I am treated in did a neratinib trial back in 2011-2012. I found this article on their website. Now it is not a scientific one and it does not say how many patients were enrolled but it tells about a woman who participated, sh suffered diarrhea as one of the se. There was a link in English
http://ki.se/en/research/smarter-drugs-to-save-liv...
I was searching for neratinib before because it seems that it can cross a bbb and I asked my onc whether I can get it but he said that I will only be getting Herceptin.
Back in 2011 there was a user in this thread Christean, SpecialK knows her, she was enrolled in a lapatinib (Tykerb) ALLTO trial but could not do it due to the se, she mentions it in her profile. According to her it was the lowest point of her bc experience so ill she felt and had to go back to Herceptin. I was also looking for info on lapatinib because theysay it also crosses bbb.
Cherr
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Hi Dannajae, welcome to this group, really sorry you had to join it. I am new to this too, was diagnosed in the end of June, still have not come to terms with the diagnosis, had my lumpectomy in July and will be starting chemo on Monday. I was also initially told that I will probably only have rads after the surgery but the pathology came showing I was highly Her2 positive and I was later told that I will have to do chemo, Herceptin, radiation and Tamoxifen after. As I understand it is a standard protocol for triple positive bc. This community was so far very helpful t me, I feel I can only talk about my condition here, no one who was not in the same situation can exactly understand what I am going through. And here you can find so much info and practical advise.
Cherry
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Dannajae, I haven't met with my MO yet, but my breast surgeon brought up the option of no chemo for me. I wouldn't think he would do that if it weren't a possibility considering triple positive, but we will see. I get final pathology on Wednesday from my lumpectomy and will let you know what is said then. I don't want to give you false hope - chemo definitely seems to be the preferred line - but you're not the only one to hear that as an option.
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About how one gets cancer...
I was reading in another forum (stupid comments I think) and a BC Woman was asked "how she caught cancer."
She replied "from a toilet seat."
I am still laughing and plan to use that line if ever asked. LOL
Vicky
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omg Coach Vicky that's funny. I was at a sporting event Friday and someone told their child not to sit to close cuz I had cancer and it spreads. I was laughing so hard I cried. Poor kid. And just to be a b***h when I got up to go to the bathroom I purposely touched that lady. Her face was the best. My husband looked back at her and said "you better go see your dr"
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Thank you, HapB, I am very nervous. I just had a long conversation with an oncologist I who happen to be a mom to one of my youngest daughter's classmate. She works in another clinic not the one that have treated me so far. I did not want to bother her from the beginning but then decided that it was not time to be shy and just asked If I can call and discuss my case. She confirmed that I will receive a standard treatment for my type and stage but was not satisfied how my clinic handled the process, that we have not received councelling for how to handle my anxiety and how to tell our daughter, so I will go this another clini for the second opinion. Apparently I can be treated in one hospital meanwhile another one goes through my case If they both are in the same county. Also this protocol weekly Taxol has been used here only for a couple of years and this decision was based on the results of international research and trials. Cherry
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Shelabela, no, please say she didn't. Are people analphabets, ever red a book or paper? Anything except for a drive-in menue? Now your husband was funny, what a great line. What kind of adult this child will be when he or she will grow up with the parents like this? Stupid people is the worst kind Unbelivable
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Yes, stupid people is right. I really can't believe it. And how did they know you've had cancer??
By the way, Shela, quick question. Your signature says 3b; how come you were that and not 3a? I just notice sometimes people with similar profiles and differing stages and wonder why the inconsistencies; do others of you notice that?
Yes, the side effects of Nerlynx sound awful. Diarrhea can be severe. I guess they suggest you take Imodium alongside. And then the liver damage angle... I was excited reading about this yesterday, but now feel a little disheartened as it doesn't sound super great when you line up benefit next to risks. It's a bit surprising FDA bothered to approve it? I will keep watching. Hopefully we'll see some new kids on the block soon
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Hi guys, when is it better to take my Zofran? I have an infusion in the morning 10 AM. Now or right before it starts?
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Posey girl, I was told , not sure it's true, but I have decided if i don't believe my oncologist who should i believe.....
So I was told the "b" part is the lymph node positive and multiple tumors that dictates that.
I have based my "diagnosis signature " off her notes.
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There is another thread on Nerlynx, very recent, started in July by Moderators. The user geewiz used to be on this thread a lot before, she participated in a neratinib trial years ago
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hi Shela, I guess the multiple tumours dictated the 'b' part. As soon as a person is node positive, I believe they are in the 2a to 2b range and up from there....
I am going to check out the Nerlynx thread - thanks
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Here is the link to the Nerlynx thread. I posted what my MO told me this week when we discussed it.
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Cherry, I was given Zofran (pills) at the infusion center as soon as I was put in a chair. Then they would hook me up to the saline bag while we waited for the chemo drugs to come from the pharmacy. They didn't order the hard drugs until my labs had been reviewed. It was 30 minutes or more before the first chemo drug arrived. Good luck with your infusion. I found the fear/anticipation was way worse than the actual process. Plan on being there all day and bring stuff to entertain yourself (book, tablet, crossword, etc).
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thanks, Twiggy. Very informative article...
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Your scenario sounds identical to mine. I see my MO for the first time tomorrow, so I guess we'll see.
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Dannajae - some of the worse is not knowing what comes next. The TP really threw me for a loop. I was already done with surgery and brachytherapy before my final path report came back. Did 8 sessions of Taxol and Herceptin until the SE of the Taxol did me in. Have been on just Herceptin since April and started AI in May. Get your profile posted and make it public so folks can help you even more. Good luck and welcome to this club we didn't want to join.
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I completed my profile. I don't know why it's not showing.
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Thank you, T-Sue!
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Taco1946 -- figured out how to make my profile public. I appreciate everyone so much. Will report back tomorrow night after I meet my MO. My lumpectomy was 7/13 but I was derailed a couple weeks due to Cellulitis at the incision site of the lymph node biopsy.
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Dannajae - I saw you got it (looks like on the first try although I needed some coaching attempts.) Good luck with your MO. Being HER+ you probably will need chemo. Look for other threads on BC.org as you know (and want to know) more. The group that "started chemo in Feb. 2017" has a private Facebook account and it has been fantastic. We've watched hair fall out and come back in and had both lots of tears and laughs.
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Taco1946 -- would love to find that FB group.
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Thank you twiggyOR, I have not taken any yet, they told me to take it 30 min before the infusion, I get nauseuous easy. I will only be given cortisone before the infusion. I hate all this stuff and that this is happening, could not sleep much at night
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I also had prescriptions for compazine and ativan, both for nausea. I took them regularly for the first few days to prevent nausea. It's easier to keep it at bay in the first place than deal with it after it takes hold.
It all sucks but you can and will get thru it! Find the group for those starting chemo in August 2017 and be active in it. You will all be going thru this at the same time and you will form some amazing bonds thru this process. I still communicate with some of the women from my group two years ago.
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TwiggyOR,
I am already in the August chemo group, everybody here has been so helpful. I have to go to the clinic now
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I have been receiving the Neulasta on body injector before I leave infusion area. How many get it the day after when they check your labs? Wondering if I really need the Neulasta at all. Am I getting it unnecessarily? For those who go the day after, did they find that you did need it every time?
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