TRIPLE POSITIVE GROUP
Comments
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Lago....
I know I'm going to have very mixed feelings on Oct 15.....my last herceptin..I am definitely going to feel much more " alone". My new mo plans to see me every 3 mos for at least the year and seems very sensitive t o my psychological as well as physical well being. He asked me yesterday if I had any psychological changes after 2 mos anastrozole....0 -
sol - i was on FEC-D , similar to ACTH. Im a grade 3 and highly triple positive - had my sample tested twice
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ashla...I was all excited about being done, and then my onc put his arm around me for a little squeeze and I got all teary eyed. It is a weird feeling. I think I would feel better if I was getting a booster shot every so often, lol.
Arlene...since you are a runner, have you checked the ACS Determination? I just got an email today on the program and they are started a training session in town. I hate running so I am not going to do it, but it sounds pretty neat.
SpecialK... I would like to see the kid that watches you open your pill box, count out your gummy vitamins and convince them they are health related!
Lago....no more liver scans! Yay. And congrats on the fundraising. they will want to hire you!
I just have to say that I feel like this fat grafting is waaayyy more painful than the first one. Maybe it is because I have less fat this time, but my abs are sore! The foobs look great on the upper pole though. Too bad they will shrink some as I think they are perfect right now.
I suppose it could also be sore because I overdid it the day after. I showed some houses (husband drove) and then did some shopping for daughter's Thailand trip. I have been exhausted running a low grade temp ever since. Today was better and no tylenol or pain meds. Temp never went over 99, and was normal most of the day.
Regarding the HER2 stuff, my onc has a patient in a trial now that is getting herceptin but is not triple positive. Whatever kind she has, they believe she will benefit.
ok, that is as good as I can get to catching up. Put daughter on plane for Thailand today. She left from NYC and is currently somewhere over Canada on a 12 hour flight to Tokyo.0 -
And the only way my posts will submit is if I hit preview and submit from there. Crazy. Otherwise it just shows as submitting and goes nowhere.
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Good luck Jenn. We'll be thinking of you.
Fluff: Thanks for the link...I'll check it out.
SpecialK: Need to see if our tiny YMCA offers the program. Thanks!
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Jenn-Step away from the computer! lol! Even afterwards. I just talked with someone 5 yrs out and she is doing great! Not many of us trams, but in the right hands, we do great! I am here for you. Try and relax and put your mind elsewhere.
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Fluff: Just checked out the ACS Determination...darn, the nearest one is Orlando which is an hour away...too far!
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Fluff: Just checked out the ACS Determination...darn, the nearest one is Orlando which is an hour away...too far!
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I know many of you have issues with nausea after anesthesia. I don't so far, even though I tell them I do every time, so they will give me the good stuff just in case.
What I do have is the big C issues. I take everything in advance and throughout and it is still an issue. Might be tmi, but finally things are getting easier and I am starting to feel better. Of course, now I have the opposite problem given all the stuf I have put in my body. Lol0 -
I know many of you have issues with nausea after anesthesia. I don't so far, even though I tell them I do every time, so they will give me the good stuff just in case.
What I do have is the big C issues. I take everything in advance and throughout and it is still an issue. Might be tmi, but finally things are getting easier and I am starting to feel better. Of course, now I have the opposite problem given all the stuf I have put in my body. Lol0 -
fluff - DS girlfriend's dog was not convinced the gummy vitamins were for my health either! He just thought they were delicious, along with my Arimidex and Lipitor. At least he didn't eat the diuretic!
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Fluff have you tried the Metamucil. I know that worked for me on chemo… the only thing that worked. How come the 2nd time around (exchange) when I told them I had issues with nausea they sent me home with a motion sickness patch that didn't help all that much. 3rd time I got the good stuff.
Good luck. I know you'll do great.
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I got the nausea patch once and woke up feeling wired and like I couldn't lay still but tired. I don't get that anymore.
I have tried Metamucil and many other things. Dulcolax stool softener works pretty well, it just seems for three days nothing helps, and its painful.0 -
fluff - BIL the gastroenterologist recommends Miralax, have you tried it?
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Yep, tried it. I am not planning on any more surgery for awhile now, so hopefully I will be good.
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Ok, I checked this board this morning. when I checked after my cardiology apt, WTH? Three pages? LOL whoooo boy. Jen, good luck. Fluff, I do have nausea.issues. I get the patch. When they removed my te this time no prob. Still giving myself the antibiotics through my port daily. Nurse comes once a week now just to check. Got a little more than a week to Ho. Heart fox concurs, done with Herceptin. Really, really, really hoping that the new study results prove 6 months is at least on par with a year. Otherwise he said its just wait and see and hope the EF comes up. Oh joy, more hurry up and wait. Still need a Dr apt for infectious disease, and see my onc once he gets the cardiologist report. Am I having fun yet? I keep forgetting! Must be Chemobrain! LOL
If I have not mentioned you today forgive me, I blame bc! LOL. Much love. You are all in my heart( slow as it is....LOL)0 -
Forgot to mention, to post easier when boards are screwy., hit submit and if it turned color to signify it took it, don't bother waiting, just go to the bottom of the page and click on favorites or active or anything. It seems it forces it through, once!
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Hi. This is my first time posting on this board. I am wondering if there is anyone else that has been doing this for as long as I have. I was diagnosed in 1997, had bone mets in 2001, treated with herceptin and arimidex. Then with femara. Femara worked for almost 5 years with the herceptin. After my recurrence in 2008, I have been on various combinations, and have just started on perjeta/herceptin. Also on Affinitor, aromisin and tamoxifen. Other than the big D from the perjeta and affinitor, I feel great. I would be anxious to speak with other women that have had similar experiences. Hard to believe, but I am the only patient in my onc's practice that is triple positive. I would be anxious to hear treatments that others have received.
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Hi. This is my first time posting on this board. I am wondering if there is anyone else that has been doing this for as long as I have. I was diagnosed in 1997, had bone mets in 2001, treated with herceptin and arimidex. Then with femara. Femara worked for almost 5 years with the herceptin. After my recurrence in 2008, I have been on various combinations, and have just started on perjeta/herceptin. Also on Affinitor, aromisin and tamoxifen. Other than the big D from the perjeta and affinitor, I feel great. I would be anxious to speak with other women that have had similar experiences. Hard to believe, but I am the only patient in my onc's practice that is triple positive. I would be anxious to hear treatments that others have received.
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Hi. This is my first time posting on this board. I am wondering if there is anyone else that has been doing this for as long as I have. I was diagnosed in 1997, had bone mets in 2001, treated with herceptin and arimidex. Then with femara. Femara worked for almost 5 years with the herceptin. After my recurrence in 2008, I have been on various combinations, and have just started on perjeta/herceptin. Also on Affinitor, aromisin and tamoxifen. Other than the big D from the perjeta and affinitor, I feel great. I would be anxious to speak with other women that have had similar experiences. Hard to believe, but I am the only patient in my onc's practice that is triple positive. I would be anxious to hear treatments that others have received.
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Hi. This is my first time posting on this board. I am wondering if there is anyone else that has been doing this for as long as I have. I was diagnosed in 1997, had bone mets in 2001, treated with herceptin and arimidex. Then with femara. Femara worked for almost 5 years with the herceptin. After my recurrence in 2008, I have been on various combinations, and have just started on perjeta/herceptin. Also on Affinitor, aromisin and tamoxifen. Other than the big D from the perjeta and affinitor, I feel great. I would be anxious to speak with other women that have had similar experiences. Hard to believe, but I am the only patient in my onc's practice that is triple positive. I would be anxious to hear treatments that others have received.
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Welcome pearlady. The board is having problems, so don't worry about multiple posts. Did you know about the stage 4 boards? There might be someone on those who could help you too, not that you are not welcome here! LOL. Much love
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Welcome pearlady, sorry all have to meet like this.
Sol-did you start the perjeta from the beginning of herceptin? Or did you start perjeta after chemo?0 -
Oh and I just finished round five of tch today...one more in three weeks then surgery nov 6th!
And I am growing hair...well more like a 5 o'clock shadow on my scalp! Lol0 -
Hi Jennifer and Soltantio. Actually I have been getting herceptin since 2003. All was great until 2008. My onc at that time told me that he still wanted me on the herceptin, since he had experience when women had mets and he stopped the herceptin, it was not a good outcome. He felt that the herceptin was still working, but that I needed something else also. He added Xeloda and Tykerb and switched from Femara to Aromisin. I guess his thinking was right since I've been fairly stable. He recently added the perjeta when it became available. I dont really fit the profile of how perjeta was approved, but for some reason, my insurance approved it. I'm the only one in my practice that has been approved. I have found it to be a bit difficult with the big D side effect, but other than that its okay. I just completed my fourth treatment. My tumor markers have decreased. Soltantio, hope you're getting the perjeta. From speaking with other women who have received perjeta, the big D is the most common side effect. Its very likely if you have that, then you are getting perjeta.
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Hold the bus!
I have a BS wholwill be doing the BMX and then a PS who steps in and does the recon.
Well, today my BS phoned me from her hospital bed. She is pregnant, due in 5 weeks and had a slight bleed. :-(
Now not sure if the op will go ahead. There is a back-up plan (her advanced trainee) but it only works if she can still supervise the BMX. I trust her totally and already knew that her advanced trainee was good - my BS is very highly sought after as a mentor and so she has the pick of the trainees. And, as she said to me on the phone today, her part isn't the important part of the surgery.
Won't know until tomorrow afternoon what is happening about the surgery the next morning...
Jenn0 -
Fluff, i take Smooth Move tea on evenings i anticipate the big C. No cramps, works like a charm, and it comes in chocolate flavor.
Whoever posted the hashtag on twitter about the study, kindly post it again. My chemo brain cant find it.
Had my last toxotere today. Yay!
This thread just moves so fast. Hard to keep up. But thank you for all the good info everyone puts in.0 -
Soltantio, actually my ER and PR are very high. I was always glad of that but now I'm not so sure. I'm still very confused over the new study with the different classifications. I have to try to read some more and understand where I fit in with that. Herceptin did work for me for many years, so I'm hopeful that the perjeta helps to give it the kick start. Also, the new TDM1 which should be available next year is suppossed to be even better than perjeta/herceptin. My Dr. actually had my bone met biopsied again two years ago to make certain that it was still expressing Er/Pr. Apparently over years the tumor can change, but mine was still very high ER/PR. Regarding the nausea, I've never had nausea from the perjeta or herceptin. The only issue I've had are the GI issues. But definitely annoying and on some days relentless. So bad that I begged my onc to give me less of the perjeta, which he has. I also take probiotics, limotil, immodium and eats lots of yogurt and banannas. Accordingy to my onc, eventually the perjeta will be available to all of us. You are getting herceptin, right?
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Hi pearlady. There are lots of good things happening for HER2+ ladies with advanced breast cancer. Do you know about T-DM1? I don't know if the clinical trials are still open but it appears to be very close to FDA approval. Do check out the stage IV boards. The women over there are very helpful and knowledgeable too… but don't forget about us here. We'd miss you if you left.
Also given that your ER/PR is very high and your grade very low is probably why the Arimidex (I call those class of drugs ESD, for estrogen sucking drug) works so well/long for you. To be honest you are the first HER2+ I've seen with a grade 1 tumor.
Jenn well that stinks. I really hope they can work it out.
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Hmmmm. When I go in for surgery (bmx) on nov 6th. Will the surgeon retest my tumor for more specifics on it as well as my nodes? Or do they just stick with the info on the teeny sample they took at biopsy?
Seems like a lot of ladies had surgery first...and some that had chemo first might have had a lumpectomy before that and bmx after chemo????
Jenn-I am going to pm you...but, I really really hope you get that surgery. I kow how hard the waiting is.0
