TRIPLE POSITIVE GROUP
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Don't be too hard on yourself, moodyblues. Only someone with a good heart, which I know you have, would be worried about having missed a chance to give someone else a pep talk. At least you didn't silence the woman or chew her out!
I, too, have been a less-than-ideal patient at times, and all my friends know it. I got crabby with people who opened windows on a cool day when I was already having a hard time staying warm--I live up north where cold summer nights can happen--and all kinds of little things like that. Fortunately, my friends have forgiven me for these things and I just need to work on forgiving myself, too.
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cherry - yes, exactly. Different areas of the same tumor can have a different grade. My experience has also been that often grading done on your biopsy sample(s) is the grade that becomes your clinical stat. Some surgeons order grade on removed tumor samples, but not always. That said, it is more the norm for Her2+ patients to have grade 3, due to the aggressiveness of this type of tumor. Grade is comprised of three characteristics, each is scored from 1 to 3, then those scores are added together to reach the number that corresponds to grade - a total of scores that are 3-5 is grade 1, 6-7 is grade 2, 8-9 is grade 3. Tubular differentiation is the first aspect, the 1-3 score is based on the percentage of tumor material forming glandular/tubular structures. Next, is nuclear pleomorphism, the 1-3 score is based on cell and nuclei sizing and appearance. Last is mitotic count, the 1-3 score is based on number of cells in the process of dividing. As you can imagine, there is potential for different areas of a tumor to vary, but I feel this may be more common in Her2-, HR+ tumors.
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SpecialK, thank you for such a thorough answer, really appreciate it.I only had a fine needle biopcy before my surgery so the grade was confirmed after they analyzed the tumor.
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moodyblues - I'm happy to hear your last treatment went well and your numbers are good!
Don't be too hard on yourself, you have been such a positive influence to so many in this forum and your feelings are justified. Recurrence is a fear we all have but as the mods and others here have said, our bodies respond differently and no 2 experiences are alike.
AliceAgnes is so right! I too have bad days and I beat myself up for not being positive all the time. We need to allow ourselves to feel what we feel without being self-critical.
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Suburbs thank you for the info.on Nerlynx. I see MO on 9/8 and this is at the top.of my list of topics to discuss with her. Since i had to stop the Lupron (goodness do I feel so much better OFF Lupron) i have been a little terrified....lupron was like a safety blanket for me. But my feet can move again, my body doesn't feel 90 anymore...no more migraines...quality of life versus prevention is such a balancing act for us who are triple positive!
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Alice, Deni, Kb870, Thank you for your words of encouragement and love. Chemo# 4 went down on Wednesday, 2 more of the TCH and then 6 more of Herceptin only. I am getting close here, thank goodness!
Melanie
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Hello Ladies, good morning. I've been a member of these boards since my diagnosis las year, but I never stopped by this group even though I'm +++. I write because I am on day 6 of Neratinib. My oncologist is a ninja and was able to get me approved for it within 2 weeks, so it is already available for those of you who want to ask your doctors about it.
I've had no side effects and am feeling fantastic. I finished Herceptin April 24th and I am pretty much back to normal and just trying to lose the 36 pounds I gained throughout treatment. For those of you who are just embarking on this most difficult journey, stay strong and positive, it does get better. Eat healthy, exercise, laugh, get some sleep and try not to worry too much. I promise you will feel better with each day that passes.
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I never understand how to post on these boards.... I did but my answer didn't show... anyway I read extensively and it seemed like it was tailor-made for me, then I asked my doctor and she decided to put me on it because I had a positive node and I'm HER2+++. They have me on baby aspirin as well, to help in preventing recurrence.
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I personally decided to do whatever it takes to never go through this again, regardless of the side effects. At the beginning I chose a more aggressive approach with Lupron and Anastrozole, but it gave me horrendous side effects and I was super depressed. My doctor told me it was crazy to put myself through so much and switched me to Tamoxifen, now I have very mild side effects and feeling better every day. My only issue is still my weight, which I can't loose as quickly as I'd like because of this darn menopause.
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hap - my educated guess is that most oncologists will not put stage 1 Her2+ patients on this drug due to the study on which its approval was based not including them. I think this will be a clinically assessed risk profile decision for most patients. Not sure how insurance companies will respond to this either, but again feel that, at least initially, it will be a risk based decision.
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Hi SpecialK. Have you had any news about the vaccine? I wonder if it will ever come to market.
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specialK,
what stage was the neratanib approved for? i am stage 2 a,node negative and i am not sure if inqualify for it just in case...thanks
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suburbs - are you asking about the GP2/AE37 vaccine trial that I participated in? As I may have mentioned previously, that trial was set up to treat A2- tissue types with the AE37 vaccine, and A2+ tissue types with the GP2 vaccine. This is tissue typing as is done for organ transplant, nothing to do with breast cancer or tumor type. The trial results showed a better response by patients to the GP2 vaccine, so I'm guessing a Phase III trial might eliminate the AE37, but I don't know if they would eliminate the exclusionary criteria on the tissue typing. I did see another trial by Dr. Poeples (the initial doc involved in the inception of the GP2 and AE37 trials while he was at the U.S. Military Cancer Institute) using no exclusions for the GP2 vaccine which ended in Jan of 2017, but it was a Phase 1B trial. I do not know what the future is for any further trialing for GP2 to continue its way to FDA approval, despite the great success so far. The way FDA approval works is to continue past the Phase II process to Phase III, which could take a number of years.
For those who are interested - here is some info about GP2:
kae - the FDA approval just says early stage, but the trial was for stage 2-3, after initially trialing the drug for metastatic patients, which is pretty much the norm for a lot of breast cancer drugs. This is the same way Herceptin came to be used for early-stagers - initially it was for mets patients only. Due to the potential for side effects, I think many oncologists will weigh recurrence risk against SEs when deciding whether to add Nerlynx (neratinib) to patient treatment design.
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thanks specialK, i will ask my onco next time i seeher. one thing is for sure ,i am tired of SEs.lol.
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Hi. SpecialK, thank you for the update on the trial.
On neratinib or nerlynx for anyone interested:
http://ascopubs.org/doi/abs/10.1200/jco.2014.32.15_suppl.528
https://www.cancercommons.org/tag/neratinib/
https://www.fda.gov:80/FDAgov/NewsEvents/Newsroom/PressAnnouncements/ucm567309.htm
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I asked my Oncologist about Nerlynx at my treatment earlier this month.
He said it might improve my non recurrence by 1% and he did not believe it was worth the possible side effects. My non recurrence number is 94.6% based on my MammaPrint.
I figure if this cancer comes back with the number I got, it was going to come back no matter what I did or did not do.
BTW, my last Herceptin in Monday!!!
Vicky
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My MO had the same response as coachvicky i.e. not worth the side effects for me in particular with my non recurrence per Mammaprint at 99.3%.
Coachvicky congrats on your last Herceptin on Monday, woo hoo! I'm happy you have reached this milestone with such a good response
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Vicky,
Congratulations of your last Herceptin treatment! I still have 3 more to go. I'm counting the days.
That's interesting about the Nerlynx. I'm not sure I'd want all those side effects either for such a small percentage.
Thanks for that info!
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Thank you TampaBBGirl
I never thought the end would come!
Vick
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Thank you deni166.
WOW 99.3 is awesome.
Vicky
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I hear you loud and clear. It has been a very long journey.
The odds are in your favor based on your non recurrence number. Thank goodness! Have a Happy Monday!
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having a bit of a pity party for myself tonight. I have had three goals since my treatment. 1) keep the cancer from coming back 2) lose the huge amount of weight I gained during treatment 3) deal with some worsening depression. The problem is these goals conflict! Lupron causes depression and weight gain. Tamoxifen prevents me from taking most anti depressants and weight loss medications. I stop Lupron, which improves my joint pain and migraines, but prevents me from switching to an AI so I can find an antidepressant. ( Effexor and celexa were awful). And never mind the vaginal atrophy at 42! Ahhhhhhhhhh
Ok. Vent over. Pity party finished. I just needed a moment with those who would understand.
Love to all!
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OncotypeDx is definitely not for TP patients, but Mammaprint includes identification of both Luminal B and ERBB2 (Her2+) molecular subtypes, so it is appropriate for TP. In fact, not all who test positive for Her2 are ERBB2, some are indeed Luminal B, and Mammaprint has delineated this with the type of assay done. There is some thought that those who test as Luminal B benefit from the addition of neoadjuvent Perjeta
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Yay Coach Vicky! So exciting your done with herceptin!
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Tres,
I'm trying to lose weight, too, and it's hard because Aromasin has made my insomnia worse. So, I'm thinking about Ambien. Plus, Aromasin + Zoladex has given me full-blown osteoporosis, so I now have to take Fosamax. Ugh. Cancer is truly the gift that keeps on giving!
Hope your situation improves soon!
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hap - it is a combo of receptors, her2 status, tumor size/nodal status, and sometimes age, that determine the systemic treatment recommendations with Her2+. Microinvasion, usually not - and less then .5cm (5mm) is a judgement call. Anything 6mm or above usually gets a recommendation for chemo and Herceptin. 2cm and larger, or smaller but node positive, will get all that plus Perjeta. Many oncologists don't use assays for Her2+ patients because chemo and targeted therapies are somewhat foregone conclusions - you are correct. I had Mammaprint testing way back in 2010, but that was because my oncological breast surgeon was participating in a study with Agendia, and it was a biopsy sample that was sent in to them, and that the assay was performed on. I'm not sure if he had known ahead of time that I was Her2+ if he would have sent it. I had a 2.6cm tumor with two positive nodes so I was definitely doing chemo and Herceptin regardless. OncotypeDx is not appropriate for known Her2+ patients, so you don't see done for TP
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Elaine Therese,
what is the difference between prolia and fosamax ?i ask because i am already osteopenic based on baseline dexa scan and i will be doing zoladex plus AI. i wonder if i could start on something already... thanks
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kae,
Fosamax is a biophophosonate, whereas Prolia is amonoclonal antibody. (Monoclonal antibodies are made to target and destroy only certain cells in the body.) My insurance company will only pay for Prolia if Fosamax doesn't work. Unfortunately, my insurance company only pays for a dexascan every two years.
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thanks Elaine!
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