TRIPLE POSITIVE GROUP
Comments
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The only drug I take before Herceptin is Tylenol. I hated the steroids and benadryl puts me right to sleep. So far all is well. I have just 5 more tx to go!
I was getting some aches after tx and asked about increasing infusion time to 90 minutes. MO said the pain I was describing was not the type of pain associated with Herceptin. He kept my time at 30 minutes and explained that its his job to get me through this with as little disruption to my life as possible, and that means get in and out of the infusion center quickly.
The pains have decreased, I think the aches may have been related to my surgery and just feeling really stressed about everything. Turns out my MO was right to keep me at 30 minutes, but at the time I was kind of upset that he wouldn't honor my request.
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Special - OMG really I might have the 'ringing' for years... YIKES - then I need something to 'calm' me. I find with 3 little kids, 'rush' times, leaving for school, leaving for practice, making dinner can aggravate me and with this constant ringing and pain in my joints I feel like I get more upset than I used to. I wish I could remember to just breathe, but I'm not so good at that, and all of the sudden the crazy screaming mommy comes out. I so HATE that and wish I could stop it. I guess you go through all the chemo, then the surgery and everyone thinks you are better and should be able to be normal, but I'm just not there yet, and all these bills freak me out. I have never ever ever in my life had people calling me to pay bills and I just can't take that either. I feel like a dead beat, but I'm not, I'm just a cancer survivor, trying her hardest.
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knm-I had to go to 90 minutes. i felt worse on short dose dense herceptin than I did on the weekly taxol/chemo mix. Ninety minutes made a world of difference. My onc said I could als o consider every two weeks or keep going weekly if that would help. He felt the point was to get the stuff. I only got benadryl twice. They lowered it the second time and then eliminated it. It really didnt have an effect.
Also, I had ringing in my ears during the infusion year. It has gradually subsided, but took awhile.
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knm, I also had ringing in the ears and a weird clicking/crackly noise through the whole chemo year. I even went to an ENT about it, but he said there was nothing he could see that was wrong and it was most likely due to the chemo drugs. It has subsided greatly, but the ringing is still there somewhat. Not enough to be bothersome like it was during chemo though.
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My ears still ring - it's worse when the room is quiet. I keep music or TV on to cover up the ringing.
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I too now have tinnitus due to the latest med I'm taking to combat SE from Exemestane. It's constant in my left ear. Of course it's more noticeable when I go to sleep in a quit room but so far I'm dealing with it. Not take the med and dealing with the other SE is worse. White noise is the best way to deal with it. Get a recording of the ocean and play it when you go to sleep.
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I don't have a constant ringing, it's just every once in a while. It sure is annoying. I had my Herceptin treatment today. My MUGA results from Monday show my EF has dropped to 58. I know it's still in the normal range but I have to say I'm a little concerned. I'm going to keep my fingers crossed that it doesn't drop farther. I'm happy to announce that I've lost three pounds in the last three weeks! All my hard work is finally starting to pay off
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my husband wears a cpap so i have the white noise. sitting here in my house this afternoon, I notice it some.
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had my Herceptin today. 30 mins with premeds of Tylenol, and Benadryl and Xofran in the IV. I'm the one used to get steroids in the IV too and talked my MO into taking them out. He was concerned because I've had big rxn to chemo drugs. But I've been fine without the Steroids. Hasn't impacted muscle aches, face psin and headaches that I feel after infusion for a few days. I get occasional ear ringing. Sometimes I notice it happens when there is a pressure change in the room. But nothing as bad as what you are going through!
We decided on Femera today. It was pick an AI day. We had it narrowed to exemestane or Femera. They used exemestane in the SOFT trial, but it is a steroidal (making me less keen on it) and it traditionally has not been used as a first line defense, but more for progression, my MO said. Lago I'm curious as to how you got there. My MO had good patient results with Femera SE wise (Over arimidex), so starting it tomorrow. Last day of tamoxifen was today. We are lucky to have choices here.Fingers crossed on this new part of my journey. Still hanging in with Lupron. More hot flashes this month than last, so grateful for subzero temps.
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formydaughter I started with Anastrozole (arimidex). We skipped the Tamoxifen even though chemo put me in chemopause. Given my age (turned 50 two weeks after chemo), was perimenopausal but have regular periods, my family history (mom & sister) both my onc and I knew my cycles weren't coming back. She did test me for 5 months.
Then the side effects after 3 years got to be too much. Switched to Exemestane in April. Doing much better on Exemestane.
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thank you Lago
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lago, I am very curious about exemestane. I have talked to my NP about it, and she said they are "saving" it , for second line treatment, in case I have a recurrence. And I am reading about it, and it seems it is given mostly to women with her2 neg. It would be given to me in combination with affinitor. I am thinking they are crazy, because I am her2 equivocal, but they decided to give me herceptin anyway. So they had treated me as positive, and now they want to treat me as her2 neg? They are making me crazy. She has refused to give me aromasin as a single agent. Cause I have had it with the "special affects" of A.I.s altogether, but you see, I must do something...
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I was ready to dump Anastrozole. My MO recommended I try Exemestane (not Fosomax). It's an AI so if you can't do Anastrozole then maybe try Fosomax but Fosomax I hear can have similar SE to Anastrozole.
My MO insisted on Exemestane instead of Tamoxifen. She knew I had it with Anastrozole. She said Tamoxifen was better than nothing but really didn't want me to go that route.If your MO rather see you do nothing than Exemestane then it's time to find a new MO or at least a 2nd opinion. That 2nd opinion might help convince MO #1.
Exemestane is for hormone positive post menopausal (or ovarian surpressed) women. Has nothing to do with HER2 status.
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Lago, how long were you on Anastrozole before you began having SE? I've been on it around 4 months and so far so good, but I'm sure it takes awhile till the drug builds up in your body.
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3 months I started to get stiff. Then that eventually went away except first thing in the morning. Then gradually got other side effects and switched after 3 years.
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Good morning !
Been away for awhile so I am hopelessly, irrevocably behind.
Tough ride this winter for everyone it seems and going through treatment must be even more challenging these days.
Just wanted to share a most hopeful new advance in estrogen positive breast cancer treatment. Our hero, Dr Dennis Slamon is front & center:)
"A Biological Quest Leads To A New Kind Of Breast Cancer Drug
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Thanks for that link, ashla. Encouraging to read.
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Has anyone who had stage 1 triple positive b/c gone through the whole lumpectomy/chemo/radiation/hormone blocking process had reoccurance? If so, how long after finishing treatment? I keep reading that HER2 comes back to visit.0 -
blownaway, I sure hope not.
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Thanks for the link ashla. I remember hearing about CDK4/6 at a BC conference I went to in the fall of 2013. The MO that was speaking said that was one of the drugs in the pipeline. Good to hear that it has been approved, even though only provisionally for now.
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Thanks for sharing the article, Ashla. I had heard about the Pfizer drug on the news. Dr. Slamon is indeed our hero! I hope to meet him someday...
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Thanks lag. I am well aware that exemestane is for post menopausal estrogen receptor positive disease. EXCEPT in women that are her2 negative, estrogen sensitive positive post menopausal. Then they do give aromasin/ afinitor in combo, mostly to her2 neg women. look it up.
it's not that they want me to do nothing, np said they would offer me tamox again. i will have to wait a couple weeks till i see onc. And worry about progression if and when it gets here. It just weirds me out- that they will treat me as her2 pos and give me herceptin, then treat me as her2 neg, and give me A/A.
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...I am not saying this very well. she doesnt want me to have aromasin as a stand alone now, because they want to "save it" as a second-line treatment if i need it for progression. And then it would be in combo with afinitor. but when i look and see who has done A/A, it is almost always er+, her2 neg women. I am just not wanting tamoxifen for other reasons...
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Tomboy given that you are stage IIIC it sounds like things are a bit more complicated. IIIC isn't considered early stage but not considered Metastatic either.
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Blown away...yes unfortunately there are triple positive people who have gone from stage 1 to stage iv, and done all the treatments. Some of them are on the stage four threads. I dont know about length of time, etc. I used to argue with my onc who told me I worried too much. I took pages from the threads in to to prove my point. It finally got him to ok a pet scan at 18 months and 3.5 years. The peace of mind for me was so helpful, even though he thought it was a waste of time. Then , he passed away. My hope for a final one at 5 years was pretty much gone. I saw one of his replacements, but didn't feel his answers to my questions were very knowledgeable regarding a survivorship plan. So, in the next month, I am interviewing two more, maybe three to make a decision on a new one.
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thank you fluffqueen it seems like the subject is always glossed over but I think reality is beneficial
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Blownaway. This woman just passed Feb 8th. While recurring so long out isn't the norm it does happen. We also don't know her grade. Seems high grade seems to recur earlier but isn't a 100% guarantee that it won't recur late. This woman may have had a low grade. She wasn't HER2+ either or she would have mentioned it.
The thing is we need to live our lives but be aware of our bodies.
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Amen to that Lago
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Last Sunday, I did the Donna Breast Cancer half marathon (Donna is a 3-time breast cancer survivor Triple Negative) and has worked very hard to raise funds for research and a Vaccine for breast cancer. She works in conjunction with Mayo in Jacksonville. As I was running, I came across Team Genentech - they got a big high five from me.
Nice to see organizations out there doing something to as Donna's theme says "Finish Breast Cancer".
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Wow, I cant believe this thread has gone for two full days with no updates! That must be a record. I had my interview with one of the new oncologists today. I liked him a lot. Seemed smart, very nice, very current on programs.
Blownaway...this might make you feel better. He has a patient who went from stage 1 to stage IV (before herceptin). Liver mets in 1998. She was progressing on chemo, so they got her into the herceptin trial. She will receive herceptin the rest of her life, but she has zero evidence of mets. He thinks it is a godsend drug.
I asked him about using herceptin as booster shots kind of every so often. He said there is merit to the thought, but the money it would take to finance that study over the amount of time it would take, given the price of herceptin would probably not be realistic at this point.
He also noted that based on my stats and treatment, I had a less than ten percent chance of distant recurrence, and even smaller chance of recurrence in the breast area. I gave him my speech about odds. That he can spout all the percentages he wants but at the end of the day, I either have 0 recurrence or 100 percent recurrence. There is no inbetween. He took my hands at the end of the appointment that he talked with me for an hour and said...seriously don't worry about it.
Still easier said than done, but I am trying.
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