TRIPLE POSITIVE GROUP
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Awesome feeling isn't it? Congrats!!!
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Congrats Sara!!
I actually don't mind my port...but I will be glad when it's gone....
WOO HOO!!
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saralmom-how did they do it?0
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saralmom - awesome!! I'm scheduled for mine out on 5/31, how did they do it. The BS gave me the choice of in the office with a local, or in the surgery center with an IV. I chose the office, but still have time to change to the surgery center if I get too nervous. The scheduler said said 1/2 choose one and 1/2 the other.
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I didn't have a choice. My BS only does it in the OR. But I just had light sedation. I actually woke up in the OR while they were stitching - kind of weird - my face was covered - I was like "I'm awake, is that okay?" It was fine though - I couldn't feel anything they were doing so they must use alot of local too. They used my same incision - its about 2.5 inches, and I have internal stitches and external steri-strips and a big bandaid. I have been in NO pain whatsoever all day and felt fine when I woke up. Annoyed that I couldn't drive all day because of the sedation!
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saralmom - I will be going to the OR too. Sounds pretty good, I can't wait.0
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Thank you ladies for your input, unfortunately I live in the Cayman Islands and things are a bit differnt over here. That is why I am looking into what will happen to me if I can not afford the Herceptin. My insurance have told me they will not cover out patient treatments, they have told me that they will pay twenty five thousand for in patient treatment, so that will cover the Mx.
It is really bad having to deal with this again after ten years. The last time the cancer was ER was negative this time it is positive.
Thank you all so much
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sara congrats on getting the port out...just one more step to normalcy.
Sam1 talk to your onc group about your concerns, and like someone here said, american ca society, there are grants and help, because I am sure you are not the first to have to deal with the ins. co. They should also provide you with a social worker. I talked with a social worker at my Ro and MO office without even asking, they just popped in to see if I needed anything or had any questions. Let us know how this all works out. Herceptin is going to help save our lives.
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Getting #5 of 28 rads today....
So far, just sore...skin is holding up...we'll see how that works at my fill next week!
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TonLee - I got a sheet withall the appts printed out and I crossed them off one by one. First week down foryou - Yay!!0
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What are the most current recurrence stats for her2? I just spoke with a neratnib trial coordinator in my city who told me herceptin only works in 25% of us and at the 5 year mark, 15% of those experience some kind of recurrence. Shes an oncologist, not employed by the drug manufacturer. Good grief. If that's true, somebody please lie to me here and tell me I will be fine.
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geewhiz does that include women that are stage IV and go into remission? That seems very low to me. My onc could give me stats based on my case that say if I do TCH & Anastrozole that 84 women out of 100 will still be alive and cancer free in 10 years (and 2 of those who did die, die of other causes, not breast cancer).
What the hell is "some kind of recurrence" mean? Yes many times lumpectomy has a recurrance… they go in remove the crap and you are fine. Doesn't mean mets. Sounds to me like that coordinator is trying to scare you into being part of the trial.
Your onc must have given you stats based on your case. I wouldn't listen to this person who you spoke with for a how long?
BTW I heard about 50% effective BUT just because you are HER2+ doesn't mean it will spread. There has to be other factors but they just don't know what they are yet.
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Lago: I was given much higher %ages. Those really do seem low!
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I have read the higher HER2 cancer responds to it best. But I can't ever find any reliable statistics.
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I was told I have a 10% chance of recurrence within 10 years. With node involvement and HER2 positive status I wasn't sure if he was just saying that to keep me positive or if that's really what he felt it was.
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Nora- I like the way hour dr thinks
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Ditto. I like the positive thinkers.
Lago, I took recurrence to mean local or metastatic, so all forms. I go back this Wednesday, I will get clarification. I for one, sure could use a little bit of peace of mind.0 -
geewhiz as we know local recurrence, although serious is not as serious as mets as long as it's found soon. The rate of local recurrence is a bit higher with lumpectomy but it doesn't seem to effect survival otherwise they would not be doing this procedure. I think those stats that coordinator gave you don't give you the full picture… and therefore very confusing. I would get the info from an MD not a coordinator.0
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Lago - how are your nails doing? Are you back to your power walks?0
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Omaz Toenail are rather sad looking. I don't expect them to be better for another year. Ugly toes for me this summer. Fingernail, some still lifted and tender but they are growing out. Not such a big deal. Hair seems to be getting lots and lots of compliments though.
I went on my first power walk yesterday in a month since I got the shingles. (Also getting much much better). I have posted the following story about my walk as wellas told friends/family as well. They all keep laughing at me:
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So guess who else likes my hair. @$#%& bird in the park. I was doing my first power walk in a long time (finally felt up to it today) and this small black bird starts going for my head. I didn't get pecked but I had to keep brushing it away then finally run away. I think it wanted my hair to build a nest or something. Gee and I thought Robins and Blue jays were mean. Next thing I know all those Canadian Geese in the park are going to attack me.Hmmm I might have to wear a hat in the park from now on. I did do the entire 50 minute walk. Still at my old pace!
Thanks for asking. How are you doing?
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Lago - I am doing alright. Getting in exercise everyday pretty much in some form or another. Only SE of tamoxifen that I have an awareness of is extra apetite - I am working hard to ignore that!!! I also made my appt to get my port removed the day after my last scheduled herceptin. I hope I can keep to that schedule. Somehow for me getting the port out is a huge milestone. I am also feeling concerned about my good friend who was recently diagnosed with a rare form of uterine cancer. She has surgery next week and I just want good news for her. (c: Oh yes, and we go on vacation in June - whoo hoo, I am excited about that!!!0
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Omaz, wishing your friend the best. I know what that's like. This one friend of mine sent me a couple of scarves before I started chemo. She had DCIS 2 years ago… a month ago she was diagnosed with IDC stage I in the other breast. She had a lumpectomy, didn't get clear margins so they had to go in again. Good news this week…oncotype says no chemo. She's doing rads next week.
Sounds like you are doing well. I can't wait till herceptin is done. Good luck getting deported.
I'm hoping to get out to my parents in August. My mom is having major back surgery at the beginning of June. I wasn't planning on coming out then because I was supposed to be recovering from surgery myself. (shingles postponed exchange). I'm just waiting to see if the shingles do infact go away completely in the next few weeks. I feel I'm soooo close.
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Canadian geese are MEAN!!! And crap all over. BLECH!! I hate them, used to live on a lake and couldn't even swim in it because the fecal content was so high from disgusting geese. That scene is hilarious though. We have birds that nest on our porch every year. Anyone coming to my front porch gets dive-bombed and runs away screaming. My husband has torn the nest down ( before eggs are laid) only to have it rebuilt in hours. This week, I walk out there and he has one of my daughters barbie dolls sitting in the nest.the birds were flying around squawking mad. Too funny.
The stats came from the oncologist running the trial in my city. I will make him cough up a study. It's been on my mind a little too much.
My 42 year old neighbor died this week.He was diagnosed December 23 with stage 4 stomach. He died in the house, in the room across the street that my family room looks onto. He left 3 little boys. I figure it can terribly depress me or I can use it as a wonderful reminder that I can never turn my back on this disease, and must remain vigilant. I have been walking, juicing regularly. It's quite a motivator.
His death spurred us to take a family vacation. The hearse pulled out of his driveway, and my husband got on the Internet. Airfare to Europe was all of a sudden 1/3 what it usually is...so off we go!! We leave in a week and are gone over 3 weeks. Dh has to be back after 10 days for work, but I will be trekking around with my 3. It's so last minute, can't find reservations....but I am not turning my back on the opportunity. I got huge into my Irish genealogy and it's always been a dream to get over there to see my ancestors hometown. We leave from there to London, then Paris...then we will see what else we can figure out!!0 -
This cancer is a nasty disease. My good friend in Florida has been battling uterine cancer for 2 years and we thought they had it but now hospice has arrived at her home. She was a Stage IV. I have another friend who is in hospice (also in Florida) for breast cancer that has moved everywhere.
With all of this occuring, they really, really need to put all their efforts into research and find a cure. The negative side of me says if they find a cure, look how many people will be out of work. Hubby says we need that aggressive researcher looking to figure all this out and make a total name for him/herself.
Arlene
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OK next time I go out walking I'm going to put a Barbie doll on my head… I do like her cousin Francie better. Do you think it matters?
I keep reminding myself that part of what comes with life is dying. It will happen some time. Always sad to see someone go before their time though.
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carberry & tonlee - Radiation was really hard for me. I was so done after Chemo and didn't want to keep going with treatments. I was told it was so easy, but the first week was really hard to wrap my head around. The machine scared me too, I kept thinking of it burning me up. The good news is that I got past those thoughts and tried to make it a fun experience by talking with the techs and telling them to turn up the radio! They enjoyed my upbeat attitude and looked forward to seeing me. I did peel under my arm and it was uncomfortable for a few weeks. I swore it was worse than Chemo because it was constant. At least with chemo the side effects lasted a few days and then got better. In the end, I'm through it and looking back, it wasn't that bad. I'm enjoying not shaving under the one arm still! 0
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I am a recent triple pos. I was HER2 neg when I started but after surgery and the testing, I am now pos pos pos!! Looking at doing a 2nd course of chemo and herceptin to get all these nasty cells!!
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I don't shave under my rads arm either....and for TMI...hair in bikini zone only came back in areas postchemo that must be shaved to wear a swimsuit....the exact opposite of ideal. God has a sense of humor. I hated rads way worse than chemo....especially that last few weeks. But, it does go super fast.
Lago did you ever see HEEHAW? Remember Minnie Pearl with the hat with the tag on it? I'm sure we can fix you up a nice bonnet with a beach scene of Francie, Barbie and even Ken hanging out at the beach!!!!
Welcome karebear!!! If I was a newly diagnosed +++, I'd definitely make sure I got herceptin!!0 -
Ha yes I remember Minnie Pearl. I may look 30 in my avatar picture but I'm a "bit" older than that.
Hi karebear
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michcon thanks for the encouragement, after finishing the first week I am much more comfortable with the whole process, I think I just had to get over the "unknown". I see a young guy, come out of rads just before I go in and he brings his own CD and I can hear through the walls that the place is "rocking!" He doesnt change into a gown so I think hey must be radiating his head or neck maybe? Too bad.
Hi Karebear! My name is carrie also and the kids I work with have always called me carebear! What do you mean by a second course of chemo? Do you have to do it all over again with diff drugs because of your diag change?
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