Taxotere, Carboplatin and Herceptin
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I know the Taxotere is the long one. I think maybe the Herceptin is only 30 minutes. I hope so. The less time I spend in Suite 420, the better! (Can you believe my oncologist has Suite 420? And he has no sense of humor about it at all!)
Bethany---My eyes have finally stopped puking all the time. This is the first day I haven't used the cortisone drops, and I even went for a run this morning, and my eyes behaved themselves! Maybe I can even wear makeup again. Yay! As for the swelling, that has not stopped, unfortunately. I'm still on Lasix in the morning, which makes me pee like a racehorse IN THE MORNING. But if I have to be on my feet a lot, or like the day I flew home from New York, my legs were sooo uncomfortable! And when I go to my acrylic class in the evening and stand there and paint for 3 hours, it can get bad. The nurse said that it might take over a month for that to go away. I've gained about 5 pounds since I started treatment (but I had lost about 10 pounds between my surgery and chemo, thanks to my nutritionist), and I'm probably less muscular and more fat than I was. But I don't have any excuses to eat Jello pudding any more, and I think I got a lot of the "cheating" out of my system in New York. So I'm back off dairy and gluten, and I'm able to exercise more without dying. So as soon as this funky edema subsides, I'll be rippling again. Or so I hope...
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Shel: They push my Herceptin in 30 minutes. You have to add time for getting your port hooked up and the meds to be ready and then for them to unhook you but the drip itself is done over 30 minutes.
Terri.
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Aly, you brought Snickers ice cream bars into your house??? Are you nuts? I have zero control around any ice cream products, and it makes me crazy when my dh brings home "frozen treats" as he calls them. He can eat one and then not go back for weeks, but I'm like you - don't get me started.
Shel: I had my first Herceptin-only tx three weeks ago, and it was supposed to only take 1/2 hour, but took lots longer since they couldn't find my MUGA score, then got all antsy about my low hemoglobin. All of that took awhile, so I was there for a few hours. I go back for #2 tomorrow, so I'll time the actual infusion and we can compare notes.
Welcome to Julie and Yuyu. I second everything Bethany said about driving and working. I'm a teacher and I took a few days off during chemo week, but then went back to work. I admit that I became more tired near the end, and I was glad I was on summer break. I went back to work two weeks after my last tx, and have been doing just fine.
Hair watch - 6 weeks post-chemo - afraid I'm still sporting a "chrome dome" (I knew that calling my elementary school principal that would come back to bite me.) Nary a hair in the nether regions either - I'm getting a little bit nervous.
Sue
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Sue. I just ate Snickers ice cream bar #6. Never again will they be allowed in my house. I do NOT know what I was thinking!! (lol!).
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Hi Aly and Shel,
You go Aly -- out, out damn Snickers. I just ate a 100 calorie Klondike dk choc coated vanilla ice cream bar thingie and it was great. This I did in the dark next to my sleeping husband and sleeping doggie b/c I'm starving. An improvement over the Ben and Jerry Americone Dream.
Sleep well. I'm wired tonight. Tried taking the Decadron at 4pm but my brain is still spinning and my body is not still. I frequently say that it's like drinking 10 quadruple venti lattes. I could become a true Seattle type on this stuff. (I think I mentioned I travel there often b/c my son, Hunter, his wife and baby Hazel live there just north of UDub.That's why/how we got to go to Snoqualmie Falls which we loved)
night night - b
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Hi all! My herceptin by itself takes about 45 min. then of course them getting it all started and fooling around sometimes takes 30 min. we do get a little tired when we know they are just talking about nothing and need to get this done. I guess they figure we are there and we will wait which we do. yesterday the nurses were not really talking to each other. It was a strange feeling like someone had done something wrong. I tried to talk to the woman that was setting mine up but she looked at me like she was not going to be nice.She also sets that thing to pump at record speed which makes my port feel uncomfortable. I try not to get her but I never know who is going to be where in the treatment room. I asked my husband was it me or were they acting strange. he agreed it was very strained in there. Most of the time they are all friendly and speak. it was rainy yesterday and maybe no one felt good I just don't know but I also wonder if someone got in trouble for something.
My other treatments with everything take about 4 1/2 hours. We take my laptop to watch a movie or 2 depending on how long the movie is. they give each bag of stuff separate but one after another. I am not sure which one makes the awful chemical taste in my mouth or if it is both the T & C. I hate that! they always have the IV bag too and it seems they never use much of it.My husband says it has something to do with how the meds that are hung above feed into the port or vein. I wonder why they don't use more of the IV. yesterday they threw away 3/4 of it because she pumped the herceptin went in so fast. My port and the tube in my neck are sore from that today. Maybe there is nothing wrong with the way she does this but I prefer someone else that is more gentle.
I lost 10 pounds this last TCH but last week I ate everything from Thur to now and still eating. I feel like a caterpillar trying to beat the frost and make a cocoon. I hope I am a beautiful buttlerfly next spring! I am not tall 5'3" and weigh 150 right now. I have been heavier but I hope I don't gain a lot after these treatments. If my eating is any indication I will!
Carolyn
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I had my first Herceptin with Tx 3. It took 90 minutes, then I had to wait around another 60 for them to look for any adverse reactions. I was told the second time, it would be 60 minutes for the infustion and 30 minutes to wait around for reactions. After that (and for the next year), it will be 30 minutes for the infusion, then wait 15 minutes. I think any adverse reactions to the Herceptin (like allergic reactions) happen right after infusion, so that's why they like you to stay for observation.
I've gained 4 pounds (though I am pretty petite so it shows more) and hope to lose it when I make my push to get back in shape after the chemo (as long as the radiation doesn't tire me out to much to exercise!). For me, it's the juices, frozen yogurt and pudding I've been eating, which I started when I had mouth sores after the first treatment. Over the past few years, I've run several half marathons and had planned to run my first marathon this past July to celebrate my 60th birthday...however, I got sidelined from all that with my diagnosis and treatment. I'm still trying to keep up exercise, though it is mostly in the form of walking these days (I did try a 3 mile run yesterday which was okay, but I am a bit afraid to push things because of Herceptin's cardiotoxicity). I wrote to a researcher at the University of Alberta who did a study on the effects of aerobic exercise for bc patients on Herceptin. Results are not published yet, but he wrote back that aerobic exercise was definitely doable and beneficial, but noted that those involved in the study were doing the exercise in a very controlled and monitored lab environment. Still, it gives me hope that I can resume running during the coming year.
Gina
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Hi Everyone,
My herceptin infusions are 30 min of drip time for the herceptin plus the seup and take down time. My doc is an exercise fanatic so she definitely encourages aerobic exercise all through treatment.
I had a consult with the radiation onc yesterday and he is recommending 33 treatments - my tumor was really small (9 mm) and my sentinel node was negative but I had a positive intramammary node - a really gray area and there are not a lot of cases with those factors- I am leaning toward going ahead with the radiation at this point.
They also retested my tumor- there was a question on the ER positive or negative- original pathology showed ER+ with 1% and the review board felt like it would be negative if retested. My onc had it retested at some lab she specified herself and it came back ER+ but at the lowest level (1-25%) so now I am being tested for my hormone levels and also to see if my body will metabolize tamoxifen - so I guess in 3 weeks when I see her again, we will make a decision on the hormone treatment appropriate for me. She said something about if my body did not metabolize tamoxifen I might have to have my ovaries removed. I havent really researched much on this one since all along they felt like I would be ER- -- guess I better get busy learning about this stuff now. Anyone else with insight please let me know.
I had just started water aerobics as an alternative to the treadmill where I lived for months thanks to a PICC line- and now I have to get out of the pool for another 6 1/2 weeks once radiation starts
Kristy
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Thanks to all for your input. It looks like the Herceptin takes 30 minutes. We'll see. They haven't done my follow-up echo yet--hopefully, they'll give me my stuff. I'm getting my running legs back, so I don't think my heart's too messed up. Gina--I hope that guy's studies do find that aerobic exercise helps prevent herceptin-induced cardiotoxicity. I've sure pushed the envelope on that during my treatments! You keep running. Remember the Camp Chemo games!
Yeah, the goodies continue to sing to me, too. But I had a major victory yesterday. I made chocolate chip cookies and didn't eat any dough or cookies. But I did have a couple nuggets of raw dark chocolate sweetened with acai during Project Runway. Rich in antioxidants, you know:)
Well, it's off to the races. I have an 11 year old daughter who I think will have to be blasted out of bed!
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Hi camp buddies and newbies. Welcome home Shell. I have Herceptin every week and the third one they add the Carbo and Taxo. 1/2 is right on the time. They usually give some IV first so plan for about 45 minutes.
Welcome yuyu. I was like you and terrified of what was going to happen in the beginning.The first time I had a ride cause with chemo everyone is different and don't know how it will hit you, but for most of us that day you are fine, the next day so so and then the third day be prepared to rest. Good advice on having light things like jello etc. on hand. The first day began the water and flush the junk out. Second day the same thing. water-water-water!..I just line up 9 bottles of water and drink them before the day is out. Eat lightly, nothing greasy, spicy or sweet on day 2. By the time it hits you won't want to eat, but try some crackers or something. And even though you don't think you can sip on that water, or eat ice chips. Even a shot glass of water ever hour can help. Carolyn made a very good point on working. Not that you will feel like it, but if you do it is important not to be around a lot of people. Especially beings we are going into the colds season with lots of sneezing and coughing people in your face. By TX 2 or 3 you will begin to see a pattern of what days you are going to be down and that is very helpful in planning your days. Keep in mind you WILL have good days in between and look forward to those and just wait out the bad ones. Who knows you may be the lucky one that doesn't have any SE or mild ones. You onc will watch your SE and will adjust your dose and meds to help you through it.
Maggie I don't have any problems really with the Neulasta shot, but everyone is different.
Getting all the things done to be ready for next Tuesdays big whammy. Sure has been a good week. I think they may have found the pain in my left leg crease and that is a possible incisional hernia.from the colostomy..just my luck. I go in for a cat scan tomorrow. Oh just thought of the yuckie stuff you drink before the scan...UGH! Oh well just one more bump in the road of this wonderful journey called cancer. Have a good day guys.
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I never had to wait around for reactions after Herceptin. They always give me Benadryal before the tx . all the treatments I get Tylenol and Benadryal. the first dose I had of Herceptin was a loading dose which meant more and so it took longer but I only got a little dizzy when I went to work but other wise felt fine. I think this is interesting how so many places do it different. I don't do much exercise except the stuff I do around the house and walking to the road for the mail. My husband does not like for me to go to the grocery by myself because he does not want me to touch stuff others have touched because my WBC are low. I told him I need to get out but at least I thought I could go outside safely. Well I got a tick on my hip and I thought it was a mosquito bite and he looked too and did not see anything. After my Herceptin treatment I went into the bathroom and was going to put some med on the bite and a tick fell off in my hand. I guess that stuff killed that tick. good thing though because it was where I could not see it too well and my husband apparently did not either. It was small but it itches. I am still putting stuff on it and I have been on antibiotics anyway since I have to take them a week after the TCH tx.
Carolyn
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Had my Herceptin only without incident. The infusion took 90 minutes (it's the ones that are once a week that are only 30 minutes.) I can take CoQ 10 again, since I'm off chemo. My red cells, though not yet normal, are much better. So there you go. The nurse said it might be a whole 'nother month before the edema totally goes away. Slowly getting back to normal...
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Shel that seems so strange to me! I have Herceptin every 3 weeks and that bag takes 30 minutes. Maybe they have me on a faster drip or something.
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Shelbaroni,
I am amazed at how you ran after lumpectomy etc...I had my last treatment in Oct 07 and exercised though the whole TC 6 treatment regime but after radiation which ended in Jan 08 I have no "mojo" left...I am beat and just have no energy...are you still running and exercising and do you have any advise??? Barb
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Kristy: Did the doctor's tell you you can't be in the water during radiation? Lap swimming is my primary exercise. I had to stop for about two months at the end of chemo because of severe muscle aches from Taxotere. I started swimming again the week I started radiation and didn't want to stop. I asked my rad onc about it and she said talk to the techs. The techs said talk to the rad onc. The rad onc finally said that I'd know if my skin couldn't handle it. Luckily I didn't react too badly from radiation. I got quite pink but my skin never peeled. I also had 33 treatments (25 whole breast, and 8 boosts). The rec center where I swim was closed for cleaning the week that I had my final treatment (3/17) so I figured that timing was quite perfect. I didn't swim that week but went right back to it the following week.
Barb: I had a burst of energy right after radiation ended but then I got very fatigued again. My red counts were still low at my last CBC (early May). Since the low RBCs are chemo induced, there's not much I can do until my bone marrow gets better. But the fatigue got fatiguing so I decided to try acupuncture. I've been going about two months and the fatigue has lessened. Now we are working on helping me get to sleep quicker so I get more sleep each night.
Terri.
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Aly: Maybe they do it slower when it's by itself. OR...maybe they give you MORE when you're just getting Herceptin? I don't know...
Barb: I certainly couldn't run a half on CHEMO. I wasn't on any adjuvant therapy when I ran that event, so my red count was compatible with life. And I didn't and don't have to have radiation, which I've heard is exhausting in itself. I'd say do what you CAN do. If walking is what you can do, walk. It's a mistake, I think, to have an all-or-nothing attitude. Do what you can, and push yourself just a little bit when you feel up to it. And then you don't lose all your edge.
Hey--has anyone felt total exhaustion and slight nausea from herceptin only? That's how I feel tonight. I'm supposed to go to a barbecue, but I feel icky. Not chemo-sick. Just a little icky and weak. Maybe it's all in my head.
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Hey Shel,,,,,,,,,,,,,,,,I felt fine on herceptin only. I had no side effects at all. But everyone's body reacts different. Good luck.
Welcome to any new gals,,,,,,,,,,,and the rest of you who are still doing chemo,,,,,,,,,good job ladies.
Cindy
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Shel,
Was this your first dose of Herceptin then? or the first one by itself? Was it a "loading dose?" I hope you feel better tomorrow.
Hi Barb, I found a Walk off the Pounds video by Leslie Sansone (at Target or online) that has 1, 2, or 3 mile options for marching/walking in place with simple aerobic moves. The one mile takes 18 mins while the 2 mile takes only 30 and wasn't really that much harder to do and, with the step changes, the time goes by quickly. So anytime, anyday. No more 100 degree day excuses for me. The instructor is not obnoxious and she's easy to follow. I'm excited.
B
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Shel, I know what you mean about blasting a kid out of bed. My grandson is so hard to get up on Fridays. I have to keep after him. I know he is tired but then if he would rest on weekends instead of staying out with his girlfriend he might feel better. I guess I remember when I was young but he has so much on his plate during the week with 8 hours of work and 6 of school. the girlfriend was talking about what they were going to do this weekend like the football game tonight and then bowling on Sat. with friends. she said Andy is getting non social on weekends not wanting to go anywhere. It was hard to bite my tongue. She goes to beauty college and high school but does not have the hours he puts in during the week. I remember how I always wanted to go and do and now I am happy just to get my house cleaned and do a few things that needs to be done. I guess that is what taking this chemo can do for a person. I need to get that walking video so I can get moving more. I am going to ask the onc if I can start with some light weights again. My arthritis is killing me in my shoulders and I think it would help. I am only looking forward to the next treatment so I can take the steroids to help the pain in my shoulders. I am not sleeping good because of it. I laid down on the couch this morning while my husband was getting ready for work and went back to sleep. I guess I need to get busy now and see what I can get done today.
Carolyn
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Hi Shel, I have had 3 herceptin only tx I am very tired after I have the tx and I had a slight fever this time but it only lasted a few hours. My first tx was 90 min 2 tx was 60 min I am down to 30 min tx's now. The nurse said there has been more research where it can be run at 30 min. instead of the 90 minutes.
Take care ladies.
Mary Anne
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My herceptin only drips are 30 minutes. Same as most the first one was 90 with the benedryl and wait for any adverse reactions... I had none. The herceptin does not leave me feeling any se at all now. First herceptin only I was a tad tired and that is it. My last one should be in December and then the port comes out YAY!
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Guess you all saw this:
Hello bc.o Community Members,
Lifetime TV is doing a feature film entitled, "Living Proof" on Dr. Denny Slayman and his story about the development of the drug Herceptin. The film will debut in late September. Lifetime TV has asked Breastcancer.org if we could help identify women who are taking - or have taken Herceptin. Their interest is to have survivors who are familiar with Herceptin host viewing parties of "Living Proof" in their local markets, with the support of Lifetime. They would also like these participants to be available for potential press interviews around the film.If you would like to see a short introduction to the film, copy and paste this link into your browser: ftp://ltbroadband:lifebb1@ftp.vidops.lifetimetv.com:21//EPK-LivingProof/Preview_082608/EPK_Living_Proof_082608_Harry_Connick_Jr_On_The_Movie.mov
So, if you have taken or are taking Herceptin, and would be interested in participating in viewing parties, please email your name, phone number, address and a short biography about yourself to Karen Young (kyoung@breastcancer.org). Please include your age, your diagnosis, and whether you are currently taking Herceptin in your biography.
Many thanks!!!
Melissa and Tami
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I did see that that but was unsure about doing this.I have not taken much of it yet and have a long way to go. I am not sure I want all my info out there for people to see. I may just be a little suspicious but I think I will keep my stuff between friends and family and I don't even tell every one in the family about it.
How do the rest of you feel about this?
Carolyn
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I won't do it simply because I don't play well with others and don't want to host viewing "parties" (blech). I'm a grouchy old biddy (lol!). It's nice that they're making a documentary about it because Herceptin really has been a miracle for those of us who are HER2+. As my Onc put it, Herceptin "leveled the playing field" with those who are only ER/PR+
Aly.
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Hi again,
I was thinking that I want to watch the program but wasn't thinking of actually participating since we're still wading through the shallow water of the one year of Herceptin. I liked hearing about the leveling the playing field, Aly.
B
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Shel,
My doctor is only in Suite 400 -- no rock. How did you get so hip?
b
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When will this documentary air?
Is anyone taking Neurontin for hot flashes? And if so,,,,,,is it working for you and how long before you noticed a difference?
Thanx, Cindy
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Cindy: I'm taking Neurontin. I first got Lexapro; that helped reduce the frequency by about half. The doc then put me on Neurontin as well since she knew the hot flashes would increase when I started Tamoxifen. I think the Nuerontin helped me. Now I barely wake up, if at all, from night sweats. I know I'm still getting them but the Neurontin takes the edge off. It's also supposed to help you sleep. I'm not finding that to be a side effect for me, unfortunatley. I think it took a couple of weeks to notice a difference. Definitely not more than 3 weeks.
I agree with most of you. I'm not willing to put myself out in public as "that person with cancer". I also told very few people about my treatments. I also don't understand why they need to "market" Herceptin when most oncs are going to prescribe it for HER2+ patients. I agree with Aly -- I'm not one to host a party. Yuck!
Terri.
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I just watched the trailer. That movie looks really cool. Found out that the movie premieres October 18. I might do the viewing party thing--already do it quite a bit for Project Runway. Might as well do it for something meaningful. My husband, who's spent a career in pharmaceuticals, is quite excited about Herceptin. Calls it a "miracle drug". So I might put my name in for the viewing party. I think I'll sleep on it a night, though. Heck, everyone already knows my scoop--except the really gullible losers who really think that I shaved my head for Comic Con or am playing a Marine recruit in community theater (both stories I've told people). Ha, ha. Really, there's nothing to hide at this point, especially since I'm shamelessly fundraising for the 3-Day. (Maybe I could even use the viewing party as another "prospecting tool"!)
By the way, an update on my Herceptin only adventure. The nurse told me that I would feel fine, maybe a little diarrhea, right? Well, last night I felt nauseous and woozy, like a truck-load of flu virus was invading my system. I got up this morning and made myself go to yoga. Did OK, but still felt weak. My husband and I had planned a 10 mile training walk today. Again, did it, but just because I have a will of tempered steel when it comes to physical activity (not when it comes to food--crossed it all out with 4 tollhouse cookies when I got home). Anyway, the nurse called me back and admitted that my symptoms are typical of the immunological response to Herceptin. So if any of you seriously feel like you're getting the flu for 24-48 hours after the Big H--that's why. I guess, this is one way of looking at it--those symptoms are just a sign that it's working. I'll just make sure that I build into my schedule one day of feeling like a piece of dog doo on the lawn one day every three weeks. A good excuse to read or watch those movies from Netflix that pile up.
Bethany: Suite 420...yeah. It would be sooo coool if his name was Dr. Marley, but it's not. He didn't appreciate my painting of him, but that's OK. He's got the personality of a slice of moldy bread. But who cares, as long as I get through this strong and never have to see him again, right? But, hey---you'd think in suite 420, they'd at least prescribe the good stuff, huh? By the way, I watched "The Man With Two Brains" the other day, on your recommendation. How ridiculous! I'm inspired to do a painting of a bald profile of myself maybe with a zoomed-in view of a hair growing out of a healthy follicle on the back of the head. More visualization!
Aly: You are not a grouchy old biddy! And even if you were, I like to watch movies with people on the hyper-critical side. It's more fun! Like the two curmudgeonly old men who sit in the balcony in Muppets features. They're a lot like me and my husband. They crack me up.
Have a great weekend, everyone! And keep pushing back.
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Hi Everybody -
I had to go get my onc's card - I knew he was on the 4th floor, but didn't know the suite #. It's 400, which explains the lack of grooviness. As a h.s. teacher, a few caring students last year offered to push the clock ahead to 4:20 for me when they found out about my dx. Very thoughtful, but I had to decline.
I had Herceptin-only #2 yesterday - no side effects so far. I've had enough flu-like crap in the last couple of months, so I hope I get to pass on that SE.
My onc is a character - he LOVES literature and movies, so he talks, talks, talks Shakespeare, novels, movies to me. It's a very surreal experience to have a short, balding, chubby little man poking around your body while he's quoting James Joyce. I have to almost grab him and slap him around to discuss MY BOOBS and everything connected to them.
I'm with you, Aly - a bunch of people coming over to watch the Herceptin movie doesn't sound worth cleaning the house. Shel, you represent us as the Herceptin-taking hostess.
Gonnna take a look at Stand Up 2 Cancer. Everybody have a great weekend -
Sue
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