TRIPLE POSITIVE GROUP
Comments
-
Hi, Bucky 317. Are you by any chance getting tx at Penn? That's where I am.
0 -
Kay1963-- Hi Kay No, I am not getting treatment there, although my MO graduated from the U. of Penn.
I am going to Morristown Memorial in Morristown NJ. I was going to go to Sloan,( my MO calls it the "THE MOTHERSHIP", but it was too far to drive ( over an hour each way) and I really love the staff and my MO @ Morristown. I lived in Yardley Pa about 15 years ago. Loved it!!! New Hope too!!!
0 -
ARLENE---so glad to hear the cold caps worked so well for you !! 0
-
Went for my colonscopy today but the surgeon could not advance near splenic flexure. so he arranged for me to have Barium Enema in a couple of weeks. I have eaten Barium before wwhen I was little and the dr thought I had a fish bone stuck in my throat. I have an enlarged uterus, like 3 months pregnant. maybe that made the camera hard to go through? He said it is clear for the parts he could see today.
0 -
Glad you love your MO and staff. I wouldn't be able to get through this if I didn't feel the same way. And with all the help here on the boards.
0 -
Thanks everyone for the well wishes on my first chemo day. So far, so good, though the steroids have me totally wired. I think I will cut the evening dose in half from now on because I know underneath the buzz there is a very tired woman who needs some sleep.
0 -
sue, it's a great feeling to have the first one behind you. i'm hoping for little to no side effects. check in and let us know how you're doing ... everyone on here will be happy to help with any questions you might have.0
-
Omaz-I asked my onc tonight at yoga about lengthening the time for herceptin infusion next Tuesday to see if it helps with se. He had no problem with it and wrote the order. So, I will see if it is better. The good news is that we head to Hilton Head on Thursday, so if I am tired, I can just sack out the entire time in the car. LOL which is pretty much what I do anyway! If I have joint pain, that won't be so pleasant, but I can take a pain pill and.....just sack out! Either way, I'm asleep!
Trying to decide if I have the guts to ride in the car without a wig. Haven't decided yet. Arlene, congrats. I thought about doing that and then didn't, but I kept enough of my hair through chemo to get around without a wig most of the time. It was after chemo that the leftover stuff pretty much fell out. So I have been growing it...sloooooowly.....since the end of June.
0 -
Fluffqueen - I hope it helps!0
-
fluff - my first Herceptin after the end of chemo they ran in 30 minutes. I posted here that I had achy hips and legs for the first time - didn't have that problem through all 6 tx of chemo, but they had run the Herceptin slower with chemo. It was so bad I couldn't sleep on my side for several days because it hurt my hips so much. Omaz suggested having them slow the infusion to 90 minutes, which I have done ever since, have not had the achiness on the subsequent ones. I am a happy camper! I would say definitely try it - there is nothing to lose, except the extra 60 minutes!0
-
Yay for an "all clear" one year mammogram yesterday!
I also get slower infusions of Herceptin due to heart issues - seems to take care of all side effects. They actually run mine very slowly for the first 30 minutes and then usually speed it up a tad to finish.
0 -
Hooray achpurpose. Great news! What kind of heart issues did you have? I went through a real mess with all the palps and all the cardiologist tests to find out that the chemo created problems for my heart but I still notice it sometimes and I think it could be the Herceptin too.
0 -
This is just a test picture to see if I can finally figure out how to post pics on here.
0 -
Apparently that's a big "fail"
0 -
C:\Users\achoward\Pictures\2011-08-10\DSC_0093.JPG
0 -
SpecialK-I had the same kind of problem....hips and lower back ached badly, along with a charley horse feeling in my calf. At yoga, I was asking him if it could be mets to my spine, or a blood clot in my calf, etc. (I really keep him on his toes). He said it was neither and to quit stressing. (Sure!)
He said with herceptin, there is no real policy as to how it has to be given as long as you get it and take it for a year. I hope this helps because I really don't want to go every week. I also felt nauseated off and on for a couple of days and just exhausted. Heart is ok. Just had second echo two weeks ago. Told the radiologist that I was leaving from there to work out, and if I was going to drop dead from a heart attck, she needed to give me a heads up. She laughed and told me the output looked good.
Stilts-pretty cool about the Mayo trial. I hope you get into it. I responded to their email and told them I would be finished with herceptin in February and they responded that timing wise that was fine and would connect with me closer to the date.
Even if I don't get into that one, I am doing the Metformin trial, so I hope I am one of the ones receiving it. I received all the literature, and have first appt on November 17 and it looks like they are only working with 12 patients at the med center, so that means 6 of us won't get it. My nurse practioner bff said I will likely know as you have gastric issues for a bit.
0 -
Hi, YaYa, and everyone else,
Now 24 hours post first Tx and feeling good. Had some dental surgery this morning complete with nitrous oxide and things have been looking up since then.
Still a little high from the steroids, too. Only one more dose of those and the chemo nurse warned I could experience a bit of a crash afterwards. I'm closely following the thread on slower Herceptin infusion and plan to ask my MO about that on the 18th when I next see him. Also ask about the 4x vs. 6x. Very happy to do 4 if that's the current standard.
0 -
fluff - oncs are kind of vague about the timing issue - the onc nurses said it won't matter - but I swear it does. I always ask if I can have it over at least 90 minuutes - as long as they have open chairs. They are always nice and it has not been a problem. I would definitely try it slow and see if it helps. I am now seeing my onc every 3rd Herceptin, I always go with a list of questions - he just laughs! I think he actually likes patients who are informed and have an active interest in their treatment. It still amazes me when I encounter people who have no idea what chemo cocktail they are receiving as we are sitting there hooked up to the pumps!
0 -
I'm glad it's not just me that is bothered by the fact that people don't know what they are being infused with! I've asked before and they don't have a clue. Also, I was talking to an old neighbor of mine at the store right after my diagnosis (hers was about 2 years ago) and asked her what kind of breast cancer she had. She said "run-of-the-mill breast cancer." Sometimes I think I might know too much because I always have lots of questions and sometimes he just kind of chuckles and says "I don't know." He (the onco) once told me that I wanted a "written guarantee" and no one can give me one. Everything else that costs that much has a written guarantee - why not breast cancer treatment? LOL
0 -
ArleneA: I'm sure I've said before that I have what they call PSVT's (basically a fast heartbeat that comes out of no where for no apparent reason). Had them before any diagnosis of breast cancer but never that big of a deal. I was supposed to get TCHx6 but had a severe reaction on my second round (first round went fine) and ended up in the ER with severe tachycardia. Gave the old heart a rest for a few weeks then started ACx3 with Herceptin to follow. My heart was really touchy with AC chemo but no "severe anaphylaxis" like with TCH they just had to push the Adriamycin real slow. With Herceptin, I make sure I drink a ton of liquid (I don't drink all water because it makes me feel yucky) starting about a day before treatment and they always run saline first to "dilute me" then run it slow for about 30 minutes, sometimes longer if I'm not paying attention then run saline again when Herceptin finishes. I still get the whole dose between 1 1/2 and 2 hours on a good day. Luckily I already had a cardiologist and he takes good care of me - he's actually a cancer survivor also so he understands the constant worry about heart damage. I also never drink caffeine.
0 -
achpurple-I am glad you have a good cardiologist. AC+Herceptin is the one the they really watch for heart issues. I had Taxol for 12 weeks, once a weeks, with herceptin. I had few side effects and no heart issues. A lot of people say the weekly is easier on your system as it isn't as dramatic. You might ask your oncologist if that is an option for you. I interviewed three oncologists and two of them had that protocol. Bot of them said that in my case (and yours is similar except mine was ductal), they said that I really didn't need chemo due to the size and the fact that I had a mastectomy with clean margins, etc. He said I needed a "little chemo" to mix with the herceptin, because hercepting works better with chemo. I figured since two people said that, one of them is nationally known at a med center, they couldn't be too far off.
SpecialK-I also go with a list every time. Many times it has been for vanity stuff....ice for nails, etc. He said he learns a lot from the women about the little tricks. I asked him about latisse early on in case I lost my eyebrows or eyelashes. He just laughed.
0 -
Thanks ach. Now that you say this, I think I remember your post.
Cardiologists who are familiar with chemo and Herceptin seem to be a rare breed from what I am finding. I had a great rhythm cardiologist but he tried to tell me he was familiar with Herceptin but when I started questioning him, it became apparent he really didn't know anything about them and their effects.
0 -
fluffqueen: Don't you think I wasn't one scared girl when I found out they were switching me to AC therapy. Once again, I read too much sometimes, and knew the heart implications involved with both Adriamycin and Herceptin and getting in that chair after the anaphylaxis episode, with a new chemo, let's just say I had my fair share of anxiety that day. My nurse kept telling me that she would need "vitamin A" if she were in my shoes - I was like "why vitamin A?" she said "Ativan." Her idea of a joke I suppose, but I didn't find it very funny at the time. I had a lumpectomy and clean margins, only chemo because of the triple positive status. I completed chemo in April.
ArleneA: It was weird because I never knew my cardiologist was a survivor until my first visit with him after my diagnosis. I'm assuming he read it in my chart because it kind of took me by surprise when he said something like "so, you're going to be a fighter right?" I said "you darn right I am." Then proceeded to tell me he was getting ready to celebrate 10 years very soon. Had some kind of rare cancer under his tongue and had only 20% chance of 10 years survival. Told me about radiation and the awful mask he had to wear while getting treatment - said when he was done with radiation, they actually asked him if he wanted to keep this "mask" and he said "I told them f__k No!" I cracked up - never had a doctor talk to me like a regular person before.
0 -
achpurple - my PS is like that - he sometimes throws out a "naughty" word, often after looking at the train wreck that was my chest! He always opens the exam room door and peeks around the corner at me to judge my facial expression before he starts talking to me, to see if I live up to the nickname he gave me, TROUBLE! So far, he has only dropped the "f" bomb once - but I did start laughing!
0 -
I am starting TC X 4 tomorrow. I had no trouble with Herceptin loading dose except I thought my chest felt a little pressure on and off during the drip--no shortness of breath. I get all three drugs back-to-back tomorrow. My MO seemed to think there was no additional benefit for me to go 6 cycles. Okay by me. Lots of folks say to drink a lot, looks like. Okay! Just had some white tea. I've read that if I need Neulasta, to take a Claritin or Allegra, right? Maybe I need some of that "vitamin A" that I've got ready!
0 -
New to the group. Been told Triple Positive, but I believe I have caught it early enough. I do have one cancerous lump (1.5cm) that I had a biopsy on. Recent lymph node biopsy came back negative, thank GOD. Oncologist seems to be positive thinking I'll come thru this with flying colors... Being HER2+, I'm TERRIFIED of after reading so much online. Aggressive. Onc did reassure me though that being a "Triple +" is a "good thing" since they have meds that will beat 'em all.
Tomorrow I have a brain scan, Wed. chemo class, Thurs. upper body scan, Friday MUGA test (heart scan). Monday morning I got in for the port placement. I'm terrified of ALL. I called my doc to ask if there was something I could take to lessen the "panic" I went thru the first MRI I had. Brain scan I'm pretty sure goes in head first, and well, just thinking about it makes me want to vomit.
I am keeping a sense of humor and continuing to live in denial. It's the only thing helping me thru this. :-) I have also started discussing my issues on FB because the positive support is SO helpful.
Anyone willing to talk to me, I'd be SO appreciative.
Jeanne0 -
Welcome Jeanne - so sorry you have to be here! I got ativan in my drip with each chemo. I was always nervous going into each one and the ativan helped relax me. Many of the things that you read about HER2+ could be from before herceptin was available. Now that herceptin is available our recurrence rates are less than they were before herceptin. And you onc is right, we get chemo, anti-estrogen and herceptin immuno therapy - three systemic ways to attack any stray cancer cells that may have escaped from the breast. The women here know so much, you have come to a good place so please ask any questions and most likely someone will have some experience with it. Best wishes to you.0
-
jeanne, i couldn't STAND my first breast MRI. i understand! now i take 10 mg. of valium before i have one. it helps, but also just knowing what to expect makes it easier. it wouldn't be so bad if it weren't for the noise! each one will get easier, i promise. and i agree with omaz. she knows her stuff. what she said about being triple + is right on. come here anytime you want to cry, vent, and/or talk to us about your experience. when is your first chemo?0
-
Jeanne - there's also a 'October 2011 Chemo group' that you might want to join - it's for women like me and you that are just starting. I'm finding the the support and info I get from both boards to be priceless.0
-
Trying to catch with everyones posts, gosh a lot happens on here in 5 days. Thought I'd share with a really crazy experience I had this weekend -
So I think you guys will love this one - I was a women's retreat this weekend wearing my cute Lymphedivas sleeves. Since it was hot and I had short sleeves many of the women asked me what had happened, I would explain. But there was this one woman who told me how lucky I was to have breast cancer, because that was the easy cancer, and that almost no one dies from it anymore - OMGosh, I was too stupified to answer, and by the time I got my wits back, she had moved on to talk to someone else. So I guess we all should be really greatful to only have the cancer that no one dies from!!!
0
This is just a test picture to see if I can finally figure out how to post pics on here.