TRIPLE POSITIVE GROUP
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thanks Moonflwr, he didn't ask you to repeat the test after a while and restart Herceptin if it is ok?
did you have some symptoms concerning 48%EF ( like fatigue, short breath etc)? me I had just fatigue, nothing else, and I though I was just tired after 6 month of chemo, never thought at my heart . they ask me to repeat , because it is possible to increase in time. I am not sure. and I want this herceptin.
thanks and good luck, we all need.
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Ashley, I just had fatigue too, and assumed it was from chemo. I was seriously bummed go find stupid heart betrayed me too, just like the darn breasts. Actually betrayed me again, as I already have a pacemaker. I didn't have any positive nodes. Clear margins and a bmx. Most studies have indicated that the most important Herceptin tx are when given with chemo. And I had half of the tx, which is what they are studying to see if 6 months is enough . There is also s new herceptin tx they are testing that is given as an injection rather than iv. So asy onc said, we dont want to kill you to save you from cancer..... LOL
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Ashley: Your profile shows HER-2 negative? I could be way off base, but I didn't think HER negative received herceptin.
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Moonflwr- you haVe the peace maker because of Herceptins SE?me I had the H just 3 months. now I'm hoping for at least 6 month. I understand you didn't have any heart condition before BC. like me. I started to exercise today, a bit, maybe 30 min ,bicycle afetr 2 months of break ( beacause of the heat - just pilates) I hope I'll improove so my EF. evan if no results I'll continue.
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ashley - As I understand it if your heart function goes down on herceptin it really isn't because of anything that you did or didn't do - it seems to just happen to some and not to others.0
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I was behind in my posts so I was reading a couple of pages---OMG all the questios (good ones too) and all the answers--I couldn't answer one--well I knew a little about the chemo before and after chemo and herceptin stuff. For some reason I payed attention that day--(that's the only thing I can pay) whoever said for shrinkage and to see if the chemo works before surgery and I got mine every week for 4 mos. She probably figured cuz of my age she's go with the weekly and I lived 5 mins. away???Ithink I got that right and then a few months after my surgery I continued chemo and herceptin and like everybody got all different kinds of chemo and 31 rads like everyone else. So I'm sure it's pretty routine.
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Oh I do rememver the MUGA stuff, because it doesn't matter what u do it's how u'r heart is reacting to the herceptin and I thought my first one was auful and I was upset and didn't say anything and when I had my 2nd it was exactly the same so I did talk to her about it and she said 70 was considered good for that test--I ean when I got a 70 on a school paper it was an automatic D- so I thought like that. But that's how much I trusted my Drs. I figured if she didn't say anything I passed with a D- and that was good enough then and it was good enough now.
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Ashley, I had the pacemaker before bc. That's why I was worried about Herceptin. I was on that since February, so I had 6 months, about half the recommended tx. And, my onc won't even let me do my chemo rehab til I get ok by my cardiologist.
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thanks ladies.
I'll see at next MUGA.....I'll keep hoping for 50%.not enough for school, but enough for H
with 50% we receive an H.
have a nice weekend
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I will be getting my first MUGA this week Don't know what this is but I wil let anyone know how it went.
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Ms Tori just to let you know I didn't have rads and had only 10 nodes removed on the left, no node invasion. I do have LE although minor. I wear a sleeve and do some daily exercises/stretches for it. While my risk was low my mom has it in her legs as did her uncle so I must have had a predisposition. Be sure to learn about how to reduce your risk of LE… granted it didn't work for me.0
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I have no advice todayciz the last couple of days have been SEish days and good thing we have 2 bathrooms LOL--0 -
Cami, love the pics!
If you are having diarrhea, please be sure you are drinking enough. Don't let yourself get dehydrated.
Ang, a MUGA is a nuclear heart scan. It measures the ejection fraction (EF) of the heart. That is how much blood does your heart push out of the left ventricle every beat. A normal EF is 50 - 70%, as the heart is never completly empty. The MUGA starts with them inserting an iv, even if you have a port, the prefer the iv. They take some blood out and you sit around about a half hour while it is mixed with the nuclear material. Then they put it back into you and you wait around again for awhile. Then you lay on a table, the machine is like a big xray machine but you get pretty close to it. The machine takes pictures of your heart moving, and takes eight minutes or so with you not moving. If its an older machine.it can take a half an hour. The hardest is not moving, and putting your left ARM up over your head, especially if you are healing from surgery. Hope that helps.0 -
sol - Yes i think the carbo also causes hair loss. I used the elastogel caps but only during the tax and couldn't keep it cold enough during the first infusion because it went long and I only had two caps. If I remember correctly I only did it during tax because I read about women who had permanent hair loss from the tax. I still lost about 70-80% of my hair but in the places where the cap fit snugly I didn't lose nearly so much hair. Also my hair came back in really quickly so I was happy that I used the caps even in my minimalist way.0
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sol yes, a reason to do neo adjuvant is to assess tumor responsiveness to the drugs they are giving you. If your tumor is not responding they have the opportunity to change chemo cocktails. My BS does not use neo for breast conservation like lago said because the tumor may die in a "swiss cheese" like fashion so you can't be assured you are getting all the cancer out if you take an area less then the original tumor size. More aggressive tumors like ours tend to respond better to chemo because chemo targets fast dividing cells best.
kltb04 my understanding is that even if they surgically remove positive nodes, the fact that there was nodes positive requires rads to the axilla - read tonlee's post a few pages back about the guidlines on rads to the axilla, or PM her, she is a wealth of knowledge on rads. I think your level one nodes would be "in the line of fire" if you are getting full breast rads anyway. Maybe a second opinion would be in order?
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OH moon perfect explanation and u'r right the hardest part is not moving cuz I talk and laugh alot so I have to concentrate on keeping my mouth closed and my thoughts more serious. Yes I think about things that make me laugh... But right no pain just mostly waiting--like most of them.
Oh moon TY, I've been going thru this D. stuff for 5 yrs, now so I know but it still lands me in the hospital sometimes--but I always drink plenty of water always did, but I do drink vitamin wter--small % vit. and contastly have the bottle next to me and don't go anywhere without it--I am so totally addicted to this water anyway so I constanly drink and we all should drink alot anyway so that's not a problem. It's funny (haha) at my age I get dehydrated much quicker even than a few yrs ago.
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Omaz: Two caps would have been tough. I had 5 and that worked pretty well.
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Thank you Moon on the muga info. Wow the things we go through
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thanks rozem - I guess I can always discuss with them when I go in for the mapping? I have a while to contemplate it as it will be 5 weeks after surgery so into November. This dude seemed very knowledgeable and aggressive with the TX plan so I can't imagine him not doing everything necessary but I was kind of overwhelmed with info during the consult.
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ang - good luck with the MUGA - I am scheduled for my 2nd one in November - I was SO SICK during my first one, I hardly remember it (I had gotten an infection after my SNB and had a fever, etc...) but I do remember it was a piece of cake compared to everything else we go through!
camillegal - I am still laughing at that pic - I copied it and put it on my FB page.
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Cami, I ended up in the hospital with ARF from dehydration, so I try to tell everyone to drink more, I am SUCH a mother..... LOL
Kltb, my first MUGA wad three weeks after my BMX, and they had both old and new machines they needed me to do. And of course the first one on the old machine did not work so we had to do the half hour one again and then the new one. It hurt to stretch so long right after surgery, I was crying. The nuclear med nurse actually went down to buy me flowers and gave them to me when I was done. But now its only eight minutes under the machine. can you tell I have the best and nicest nurses around on my team?0 -
sol - no steroids for herceptin only. My center does insist on still giving benadryl the first H only time but I am going to have them cut it out next time.
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KLTB,
You may want to ask him if he's seen the newest study out showing rads to the axilla improves survival.
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Tori,
Yes, I think you have a good handle of all this! Here's hoping your nodes come back NEGATIVE!!!
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Tonlee- thank you! :-)
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Do I need to think about having a port for chemo put in or can they do it through a picc line or do I just get stuck each time with IV needle? And is that last one safe? What if it infiltrates?
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MsTori. I had a port. I had nodes on both sides (10/4) removed so I was glad no sticks in arms. They could have done it in my foot but I'm glad I got the port. A friend of mine did TC (no H) and some of her veins are now blue. Given that you will have Herceptin for a year I would consider the port.
Wishing you clear nodes.
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MsTori...
Good luck with the nodes. I had my power port placed during sentinel node biopsy prior to neo chemo I have had n o problems with the port from placement through my 15th Herceptin last week. No pain..no se 's and minimal discomfort in acceessing. Some nurses of course are better than others. My power port has been my friend but we're breaking up next month!0 -
Miss Tori: My opinion is go for the port...save those veins. I have really good veins and wanted to keep it that way. It was in my way a bit but if I have to go through this again....NOOOO....I'd get it put back in. I was very fortunate in that every nurse who accessed it was great and they used mine for my MUGAs too. Remember you get a lot of routine blood draws too and they use the port so IMO save those veins.
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Be sure to get a power port. I did not so it couldn't be used for any scans. I have to fight to get them to use my foot
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