TRIPLE POSITIVE GROUP
Comments
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Jstarling, if you can do a bit of gardening after 4 rounds of TCH, I would say bravo. That is a big accomplishment. It's a tough regime. Sounds like you are handling it pretty well.
Moodyblues, I hear you. I'm still taking a low dose of Prozac. It's definitely helping but I have moments like you describe. Hang in there. Please vent often and keep us posted. We don't want to have to bail you out!
I don't want to get ahead of myself, but, after a year dealing with a post-surgical infection and revision surgery post surgical return of infection, I have finally turned a corner. The wound has closed. No more output. The bandage is for safety, not a weeping wound. I see my infectious disease doctor tomorrow. Fingers crossed
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MoodyBlues ... Go to the manufacture's website and ask them where to get it localy or if they can directly sell it to you. No jail time, sweetie ... Orange is not your color.
Photogirl ... It will get better. I think it takes a good year from the last treatment to feel like yourself again. As for not understanding, several months after I had my diagnosis I asked my first Oncologist to go over everything again and explain it to me. It was the kindest he had ever been. He said you were in shock when your first heard this and his second explanation made sense to me. Just ask.
I am off to PT this morning for my hands. I believe this will avoid trigger finger surgery from most likely the Arimidex.
Warm wishes to all!
Vicky
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Welcome ladies,
just to let you know I had my last herceptin yesterday and first zoledronic acid (I`m supposed to get it every 6 months) and today I have terrible back pain . I hope it will be gone soon as I`m getting back to work on Thursday.
I thought my onc would switch me from tamoxifen to some AI - but she hasn`t. She said tamox is better in my case, that she would give me an AI if I was very young (I`m 40) , or my tumor was big (it was 1,5 cm), or if I had node involvement. Can you (SpecialK?
) comment on it? I started to read TEXT trial but my English is not good enough to understand it in every detail. I don`t know if patients engaged in it were high risk given their age, tumor size or node involvement? Does it make a difference for me , shall I insist on switching to AI or tamoxifen is enough? My onc also said that 5 years of hormonotherapy would be enough for me. Well, I was convinced I should get 10 years. Grrrr ….0 -
Suburbs, I know that if all of you ladies pool your money, you can get me out!! Or buy me cigs. lol.
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Vicky, you are correct when you said orange is not my color! I am a pansy, I wouldn't make it a day in the PEN!
I had already contacted the manufacturer and this is what I got as a response when I asked which pharmacies sell Letrozole manufactured by Apotex:
Good afternoon,
Thank you for your inquiry. We understand how important this is to you. Apotex only sells to wholesalers and distributors and does not sell directly to pharmacies or individuals, therefore we cannot specifically state which one of the pharmacies within your area carries this medication. However, please try any of your other local pharmacies such as Target, Wal-Mart, Publix, CVS or Walgreens etc. Should the medication not be available, ask the pharmacist whether they can have the medication special ordered through their wholesaler for you.
Kind Regards,
Denise Adams
Lead Associate Call Center Product Complaints
Apotex, Corp.
2400 N Commerce Parkway, Ste #400, Weston, FL 33326 USAT: 800-706-5575 | F: 800-706-5576 | dadams@apotex.com | www.apotex.com
So, I am getting nowhere. Of course....
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Photogirl - my first MO let me know right away that it was not his job to teach "Breast Cancer 101". So glad to see the last of that pompass ass! Due to insurance company changes every year, I've had 3 others since then
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Congrats to all of you finishing Herceptin, yay! Time to celebrate 😊
Suburbs I am so very happy that your wound is FINALLY closed...that is wonderful news.
Vicky I must have missed the post about your hands - what is going on with them? I’m curious because lately my right hand is super stiff and sore. I have never experienced this before. I have PT on my left arm for LE and shoulder rehab plus I am left handed so my left is not as sore as the right. Is this another side effect from the AI? I am on Letrazole.
I hope the PT helps you!
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Blownaway, I do think most oncologists think that they rule the workd.
Deni...I have trigger finger on two fingers on my right hand. On my left hand I had trigger finger operated on before diagnosis. My surgeon believes the Arimidex is affecting my hands. My ortho surgeon wants to do surgery. My surgeon said no way as long as I'm on Arimidex.
So, I'm taking physical therapy on my hands and it is working. My physical therapist says I have full mobility and I awake without my hands cramping. I do my home exercises. I also tape the fingers as SpecialK shared.
Vicky
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SpecialK et al.--(first of all, SpecialK--I still have not figured out how to "link" your name--ennyhoo. . .) I continue to have fun looking at my weekly blood panels, which are always posted Wednesday mornings. I'm still holding up pretty well (absolute neutrophils just dipped out of normal range, RBC coming down but still normal, WBC low, although they had ticked up the week before last), but my glucose is up. It had been in the 80s-90s but was 115 last Friday. This is probably diet-related, right? I admit I've been treating myself to slightly junkier food than I might normally eat. Tell me I can keep having some cookies.
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ingerp - are you taking oral steroids or getting them in your pre-meds? Dexamethasone or Decadron? That is usually the culprit in slightly elevated glucose, unlikely to be food if you didn’t have a pre-diabetes situation previously.
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Thanks as always, SpecialK. I'd read that steroids (which I get weekly in my premeds) can lead to elevated glucose. No pre-diabetes here, but just to be clear, you're officially giving me permission to continue with my cookies?? ;-) (And really--I only asked because I am very focused on keeping to my tx schedule. I'd be more than a little bummed if I showed up some Friday and got sent home, although my guess is the glucose level wouldn't impact that)
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ingerp - yes, cookie on for the moment - gotta do whatever it takes to get through this, then think about cookie moderation, lol! Doubtful elevated glucose would be a send home event, mine got up to 205 at one point, never a word from my MO - they expect it due to the necessary steroids. If it had not normalized then we would have a different issue, but it did.
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Roger all that SpecialK. Again--your input is wonderful.
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shelabela,
interesting that you are menopausal. is it from tamoxifen or the chemo?i am 45 and despite being on zoladex and arimidex, i am not menopausal. but my estrogen is low so it's all good.
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I am through, Herceptin done! I am very happy that I breezed through the Herceptin as I know some people do not. I have to remind myself of what you ladies have said (those that are through) when you are done, finished....now what? Now I continue on and keep pushing forward. I so wish that I didn't need the estrogen blockers what a freaking bite in the butt.
I had a man try to pick me up at the infusion center today (he was bringing his friend). I was thinking who in the world would try to pick up a woman who is hooked up to high test? lol. He was some kinda special, he mentioned that women needed different things than men did. I needed him to shut up. Seeee what the Letrozole made me think. Bahaha
Melanie
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Hooray Moodyblues!!! I can hardly wait to be done with H/P phase! Congratulations, so happy you got through it pretty well. Funny about the guy at the center today......we can think things like that with or without drugs!
😉 👏 🤐
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A huge Congrats Melanie!
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Thanks Vicky for the info on your hands. I am glad that your PT and home exercises are helping. Who wants to go through another surgery after what we all went through! I will talk to my PT about the stiffness in my right hand. I don’t see my MO until November; however, my tailbone pain is getting bad again so I may request an appointment earlier.
Congrats Melanie on your last Herceptin! I had a good chuckle over your pick up experience at the infusion center, especially your thoughts lol 😂 I’ve been having a few of those Letrazole thoughts myself lately.... or at least that’s the excuse I’m giving myself0 -
RAY RAH MELANIE!! You must feel wonderful. Coincidentally, apparently todayis my two-year anniversary of finishing rads. I posted a picture that popped up on my Timehop app over in the Weekly Taxol group. Good motivation during this middle period of my tx. #5 tomorrow, and after next Friday I’ll be halfway through with the T. :-)
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Hello everyone. I am new to this diagnosis and this group. I had a lumpectomy May 25th. It was an 8mm triple positive, clear margins, no lymph node involvement. My BS told me because I am her2+ I may need chemo but because it was less than 1cm and margin/lymph node clear the oncologist may decide no chemo. My appointment with my oncologist is Monday June 18. The wait is terrible!!!!!! Why do they make you wait??? Anyone have any info?? Thank you!!
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hello ladies,
1stronglady: the wait is terrible. Sorry you had to join us, but also, welcome to this amazing group! Most Her2 positives undergo chemo, however, there are variations in routines. So great you found it this small! It is indeed a huge advantage in beating it for good. Even if you need chemo, most probably a lower dose. And although to you chemo now sounds probably like the worst thing possible, it is doable. Trust all the ladies here, if we could do it, so can you!
All you knowledgeable ladies out here... today I have a strange day. I woke up and my left (operated) breast felt a bit tender and sore. Even my ribs on that side feel a little sensitive/sore. And my lymphs in my neck on that side. Not painful, I just feel there something. My idea is that it can be caused by two things: today the weather here was crazy. From scorching heat went to quite cool with thunderstorms and rain. Can my operated side react to the weather? Or, I started to exercise in the past week, every day for 30 minutes. Could that be it? Have you experienced anything like this? Thanks... am a little bit nervous
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1stronglady, we too are sorry you've had to join. The waiting is always the worst! Since you are 1stronglady, you'll get through what you need to do.
Photogirl81, could you have slept oddly on that side? Did you do something different with your exercise yesterday? Naturally, if it persists, probably best to get it looked out, for easing your mind.
We're thinking of all of you!!
The Mods
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Hi 1stronglady,
I am so sorry you find yourself here among up. However, this is a good group to ask questions of.
I wanted to prepare you for the probability that your MO will recommend Chemo along with a targeted therapy drug called Herceptin. If your tumor was 5 mm or smaller, they often give you the choice but 8 mm (the size mine was), they want you to have the Herceptin. Your tumor size is what is known as a T1b. Studies indicate that T1b tumors have a better prognosis if Herceptin is given. Because studies in more advanced forms of Her2+ breast cancer show there is a synergy between chemo and Herceptin (meaning they are more effective when the two are combined), the thinking has been that even in smaller tumors. you still need that synergy. That may or may not hold true, One of our members, Deni1661, was involved in a small study trying to sort that out. But as of now, the standard is chemo + herceptin.
Even doing chemo, there are several different options which your MO will go over with you. I did what was known as TCHP (Taxotere, Carboplatin, Herceptin and Perjeta (another targeted therapy drug for Her2+ ). I was supposed to have this cocktail every three weeks for 6 sessions, but my MO pulled the plug at 4. I then had two more rounds of H&P and then continued on for 12 more cycles of just Herceptin.
You may be offered a chemo called Taxol with Herceptin. Taxol is given weekly for 12 weeks. I asked my MO why that was not offered to me and she told me that the study had not yet matured. Recently, the results of this study showed the results for 7 years (maybe even 8) and they were very good. Most of the individuals in that study had tumors less the 2 cm and were node negative. I think my MO would have suggested this regimen had the study results been available when I was diagnosed.
It's possible your MO will say no chemo, but I would guess he will definitely suggest Herceptin. Best of luck.
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Tess111 Thank you for the info. What side effects did you have?
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Photogirl81 Thanks! The waiting is so difficult! The thought of chemo is scary! Wish it was all behind me. Hope you are better this afternoon
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Photogirl -- re: soreness -- there's the two weeks test. If your soreness persists for over two weeks, calling the doctor is a good idea. If it goes away, it was probably a temporary thing. ((Hugs))
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Photogirl I hope your pain is better today. I had pain off and on in my breast for a period of time, nothing horrible but still something noticeable. I was also told if it persists or becomes consistent, then best to get it checked out. I had DIEP recon last April and even now I get these weird pains. I have LE and cording under my arm which I notice can sometimes cause discomfort/pain.
1stronglady - sorry you have to join us but this is a fantastic group for support, information and inspiration. Waiting is indeed awful but in the meantime, this group is a great place to get good answers to the many questions you probably have. I participated in a clinical trial with HP every 3 weeks for 1 year. I am on an AI for 5 years. I had a great response and surgical pathology was clear. As Tess outlined, your MO will discuss several options for treatment. Ask lots of questions and decide on which treatment is right for you as an individual. Our bodies are all so very unique and therefore our responses are unique as well. Make sure you are at peace with your medical team and your decision. You are stronger than you might think at this very moment and remember we are all in this fight together. Don't hesitate to reach out - we are here to help!
Best wishes - hugs
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Welcome, StrongLady. Agree with others that the early waiting is very hard. I had hoped that I would be able to do this without chemo but after oncotype testing was way out of the gray area. I have completed 4 of 6 TCP treatments, tough but the research supports good outcomes for us. This group is incredibly supportive...and even fun-loving
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elainetherese,
what is your dose of celexa?
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