TRIPLE POSITIVE GROUP
Comments
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All dressed up and no place to go - yet.
We were told to be here at 6:00 am then they called later in the day (yesterday) and changed it to 7:30.
We were put in the far side of a double room - had to put the gown on - i already have the IV thingy in my hand - urine sample - blood pressure - not long after that we hear the sound of my breast surgeon's voice on the other side of the curtain and he starts out by saying "hello, my name is Dr. _ and you have been diagnosed with breast cancer, etc.". He would say a few sentences and then someone would translate in Spanish. My first thought was that she had gotten a biopsy and he was using this room - or rather that half of the room - to give her the results but about 15 minutes later she came through this side to use the restroom and she was dressed for surgery as well. After a few minutes they apparently came in and took her to surgery.
When we got here I saw a board with the BS's and PS's names and my initials and could have sworn it read 8:30. When they had cleared the other side of the room my husband went and checked the board and said the time next to my initials now shows 12:30.
I had a moment of thinking "has there been some kind of mix-up??"
I'm still wondering what's going on but no one has come back to check on us for quite some time now so there hasn't been a chance to ask.0 -
Wow! I'm a full day behind! I don't think I can catch up. Day 5 post chemo.
Hi Jenn! Glad surgery went well and all ok.
Rozem- still hugs. Lotsa hugs. And then more hugs.
SpecialK- got the link to eyebrow stuff too. Yours and Lago. Thanks! Also got your PM. Will look for it.
Went to LGFB yesterday. It went good. We all ended up talking and never fussed with makeup though. There was a lady there that was just diagnosed and has absolutely no local family or friend support. She doesn't need chemo, but rads. My heart goes out to her. I gave her this sight info and of course, we each gave her our contact info. I hope she reaches out. :-(
I still have some stubble hair on my head. And I haven't shaved in a week! Hah! So there Gillette! I have been wearing my beanie cap less around the house. But my complexion I noticed is changing. Meh!
Thanks for all your support and links and I hope everyone has a fantastic day!0 -
Pbrain, & specialK
Thanks for replying. I will see the mo again on Nov. 26, after scans are done. They went over some SEs with me, but I wanted to hear first hand from ladies who've actually taken it.
Blessings
Paula0 -
The nurse just came in and brought a tube of numbing cream and had me apply it - she acted like it was something new to her and had said earlier that they might wheel me over to his office to apply this stuff...
She confirmed what the board indicated when my husband went to check it the second time.
I'm glad I brought my iPad.0 -
Soter,
Herceptin gave me headaches at first. Pretty bad ones.
I also have heart damage from it.
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Lee,
How frustrating! Here's hoping things get worked out sooner rather than later.
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Hi TonLee,
I was able to get a quick look at the scheduling board on the ride to the sentinel node procedure. I misinterpreted it. I thought the first slot with the BS's name only was for the portion that's his part and the second slot that showed his name and the PS's was for the tissue expander part. This is the first time I've ever had a midday surgery so I didn't realize it still required such an early arrival.
I saw some of the herceptin heart related posts but didn't read far enough to find out that you had sustained heart damage. I'm sorry......0 -
Lee I'm sure you're in surgery now but I had to be at the hospital by 7am. My surgery was set for 2pm the earliest. I think they finished up around 9pm with me.
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Lee, I went in at 8:30 a.m. for a 1:00 p.m. surgery. I asked the anesthesiologist to put me under ASAP because I was too hungry to go on. It was one long day and all I ate was two graham crackers and 2 diet pepsies. I got the dye at about 9:30 and had the wire placed around 11. All went fine. I hope the same for you. They've gotten pretty dang good at this stuff.
So I have to post a small rant. Everytime I move on to the next step in this lovely journey, someone pees in my Cheerios. I'm not normally annoyed with my fellow humans, just accept them as flawed loons much like myself, but this experience is pushing some buttons. Everyone wants to help me all the time. One lady said to a few of my friends "why do I have to fight with Jane to get her to let me help her?" Um, maybe because I only met you 2 months ago, and I'm kind of private about things.
So now, during my 8 hour chemo on Friday, my buddies all want to take the day off of work and sit with me. ALL DAY! Why??? I do love them, but I can't sleep then. I'll feel like I have to entertain them when I just want to zone out on Streaming Netflix. I'm hooked on lots of inane series right now, so I'll be plenty happy. I have to see what's going on on Say Yes to the Dress Atlanta.
Some sweet woman made me a giant pot of chicken noodle soup and I'm a vegetarian. My doggy is enjoying it. I thank them, but I feel like I reach out when I need help, and handle the rest on my own just fine. I asked for help when I had to go into a part of Indianapolis that I'd never been in at 7:30 in the morning for the echo. A native Hoosier friend drove me there and back, so I bought her lunch that weekend and she graciously accepted. We had a great time actually. Why do some people (especially those you barely know) have to be so dang pushy???
Ok, done ranting. I'm feeling nauseated these days and I haven't started chemo. So now I'm convinced that I have pancreatic cancer. Or liver cancer. Or my gallbladder will go during chemo and they won't be able to help me and I'll die like Andy Warhol. Can someone talk this neurotic east coaster off the ledge?
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Pbrain I too am an east coaster in the Midwest.
1. people who bring food. You need to thank then but let them know that your taste buds are funny and there's so many things you can't eat right now. Best to save it.
2. friends who want to stay with you all day. Tell them the chemo room limits how many visitors can come with you. I know when I did chemo it was in the old space. I was only allowed one person. Now I think you can have 3-4 but you can tell a white lie… or just tell them they give you so much benedryl that you just sleep the entire time.
3. Pancreatic/liver cancer symptoms are almost identical to the symptons I get when my IBS acts up. My IBS acts up. Those symptoms are similar to lots of stuff including many drug SE. I was bloated and had very light stools the other day. I also ate badly all weekend so I know it was my IBS.
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Did I mention I was deported today. I too had my port get stuck to my skin. My surgeon said that wasn't common. I know someone here had that issue. Big dark spot where my port was. Hope it goes away.
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pbrain i felt the same way during chemo...well meaning friends and family doing the same thing. I remember one day a good friend of mine showing up at my door with some frozen homemade goodies which was really sweet but I looked like a bag of s**t, I don't think i had showered for 2 days (I know disgusting) and the thought of people seeing me like that was horrid. Your friends and family want to help in some way so they feel like they are doing something because they feel so helpless in what you are going through. As for acquaintances, I had a tough time with offers from them. It was also very sweet but I just felt weird accepting help from people who I only knew casually (ie neighbours) - but thats just me
mstori my complexion changed during chemo, I had some dark areas on my face - they did go away once i was done and my complexion now looks pretty much as it did prior to all this crapola
thanks for the hugs everyone - I am down to 1 perc every 6 hrs instead of 4 so i guess thats progress??? the spasms stopped today - Dance, I got the spasms on the side without the lat flap the last time aswell so i just think its the muscle contracting in response to the the liquid being taken out. I guess it will be awhile before i get my first fill, which is depressing because its that much longer before i get these monsters out of me
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Lago, yay on the deport. I can't wait till end of march that is when mine is coming out. Right after my last herceptin.
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Lago- congrats on the deport! I just tugged on the skin on mine ......maybe I should keep an eye on that. Ouch! Hope the spot goes away.
Rozem- thanks, it is changing, but I just don't even feel like fussing with make up at this point. My skin looks thin too. Meh! ((Hugs)) your expanders, my abdominal mesh, ugh! All uncomfortable! Lets pity together.
I'm bleh tonight, gonna hit the sack early. Cancer sucks. That's my scream. I think these chemo meds mess with the mental aspect too!
Prayers out to everyone with surgery, recovery and starting chemo.0 -
Lago, thanks for the kind words and congrats big time on losing the port. I'm still kind of freaked about mine, but hear I will seriously appreciate it over the next year. And that's an idea, the limited time. I know there are two chairs and a table in my chemo room and they want to park themselves there and use the WiFi. If I just want to sleep, I'll feel weird and shy. I can't even sleep on intercontinental flights. Sleep is a many splendored thing, but kind of private, no? And yes, over the years I've wondered if I have IBS and even a bit of a gluten sensitivity. I get pretty messed up if I eat a bagel or a Philly soft pretzel.
Rozem, I'm like you, good friends can definitely haul my butt to the echo and sit with me at the chemo teach, but I don't want sort-of friends to be trying to do things for me. I get shy and I don't know them so I can't relax. I'm so glad you are feeling a bit better. I feel so bad when I see how much you are struggling because you and I had surgery on the same day and besides an errant itchy stich in my breast, I am doing fine.
Hang in there Ms Tori! You are golden. Go sleep :-)
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Got a call from my BS. He got the path back from my MRI last week. 2 nodes 1"+ showed up. Confirmed his DX to do chemo first before surgery. I saw the onc that works with him, but both of them are over an hour away so I may do chemo closer to home. I liked what someone earlier said: "once you know your tx, it doesn't matter where you belly up to the bar". It made me laugh. I have an appt with an onc that is closer (and was recommended by my BS) next Wednesday after my wig appt with my DD.
So, stupid question for all of you who have gome thru this. Who puts in the port??? If it's the BS, then I will just call him and make the appt now before I even see the new onc. None of the docs have said anything about who does the port. Or maybe they did, and I was just too overwhelmed to pick up on it! Thanks in advance.
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Sometimes the port is put in by the BS and sometimes by a vascular surgeon, particularly if you are doing neoadjuvent chemo and not having a breast related surgery first.
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Thanks SpecialK. I guess I will call BS office tomorrow and see what they say. I would really like to get started with the TCH the week after THanksgiving.
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Bren, I woke up from my lumpectomy with the port, so it was my BS. But like SpecialK said, I didn't have neoadjuvent chemo. My buddy Mike's wife did and she had to make an appt with her BS for the port. I go to a breast center that coordinates it all (which is a good thing because I'm the absent-minded professor if you ever saw one). I'd call my MO and ask for it before you get started.
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Port Vascular surgeon did mine. I asked to have it done during my BMX but the nurse said no. Granted I hadn't seen my onc yet but know I was HER2+ and had a really big tumor I knew I was getting chemo & herceptin. Same Vascular surgeon removed mine today. I had adjuvent chemo.
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pbrain - I know my center would only allow one person with each patient and that was only if there were available chairs. My center was in a brand new office and the chemo room was large, but it was communal and very busy. Also something to take into consideration is the safety and privacy of the other patients - more people means more potential exposure for patients who may be immuno-compromised.
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Hi everyone! I've been off the site for a day & fell behind 3 pages! I was at my center all day because there was a big back-up due to Sandy. Waited around for hours, but happy to say it was my last herceptin. Happy & a little scared at the same time. My echo this week showed 60% & MRI of back showed degenerative discs. That explains back pain, so that's a big relief. Bone scan showed uptake in left ribs, in the same area shown in bone scan in january. Im told its post surgical trauma nothing to worry about. So its all good - just feels weird to be done with the infusion room.
Lago - ACS would be incredibly lucky to have you.
Rozem - sorry you're still in pain girlfriend.
Pbrain - I was freaked about port too. I was picturing some kind of gaping hole in me. But I got used to it quick & am so glad I had it.
Long day & another storm kicking up here in jersey. Nite
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lago - Deported - that's a milestone - congrats!
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Jennifer404Yay for negative nodes!! Feel better soon.
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Jen, glad no nodes. Rozem, hope you get more relief, maybe even go to 8hours on a pill! Well, even a bit better IS progress. But we'll pray for complete relief from pain.
Lago, you have been unported! Did they put you out? Was it surgical? I am leaning more and more to getting it out. But I am still thinking about it.0 -
Wow, lots has happened since I checked here this morning. Congrats lago! My BS put mine in during my MX and he took it out in the office, just numbed it up alot, I didn't feel a thing. I had planned on being knocked out for de-porting, but would have had to wait another month, it really wasn't bad, I did take an Ativan though and didn't watch!
Shore1 (hope that's who it is) congrats on your last Chemo.
Pbrain - the chemo rooms usually have limited space, and I never wanted more than one person with me. Just thank them, and say no. Do you have someone close that could take you, it is good to have one person there. I volunteer at our infusion center an too many visitors can be in issue for you, the other patients and the nurses. I usually didn't visit a lot during the big chemo's it was different on herceptin only days. Not sure how your center is set up, but ours is set up so the patients can visit some, if they want, it ended up being kind of a support group many times during treatment.
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Yuck! Received a script in my emails at work just before from my MO for a brain CT. I was pretty much expecting it since I emailed the nurse the other day to say I was experiencing a weird headache on the right back of my head along with mild nausea and floaters in my eyes and blurry eyes. Separately these could all just be side effects of Tamoxifen which I restarted about 3 weeks ago (and had to get a different brand), however combined they are worrying.
I knew that my MO would probably want to test, but it's just so CONFRONTING seeing the script which says "previous breast cancer - headaches - ? mets".
Anyway, my appointment is 7.45am next Tuesday morning before work (I'm back working full-time) and the nurse emailed that my MO would call me with the results so I might have them by Thursday next week...
Jenn
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Aw, Jenn, ((((hugs)))))
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Adding ((((HUGS)))) for Jenn
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lago - good luck with the ACS job. If I ever go back to work, that's the kind of job that I'd love. Cancer can sure change your interests!
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lago - yay for the de-porting. The torch for "old ports" now comes to me and camillegal.
jenn - somehow I think seeing the script for the CT in writing makes it very real - bummer, but hoping it is all ok.
sol - YAY, YAY, YAY!
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