Taxotere, Carboplatin and Herceptin
Comments
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Shel: Your nose is lined with a membrane, so it's getting zapped as well. Mine did run a lot. Stock up on tissues. Feel free to be in a bad mood once in a while. The whole chemo process pissed me off royally. People who tried to cheer me up pissed me off royally. People who would call (my mother) and ask how I felt pissed me off royally. I'm being poisoned, how do you think I feel? The good news is that you eventually get over it and become philosophical about the whole experience. And the best part is you get to cheer on others that come behind you.
Aly: It's good to hear my eyebrows are in a better place. Your comment made me laugh.
Joia: Good luck with your first treatment on Monday. I'm glad you were able to come to agreement with your oncologist. I am thinking of trying accupuncture as well. I'm 5 months past treatment but still get tired at night so I don't get much done after work. After swimming last week I talked to a "regular" who is an accupuncturist and she thought she could help strengthen the immune system. She's bringing in her card next week.
Terri.
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Shel: Your nose is lined with a membrane, so it's getting zapped as well. Mine did run a lot. Stock up on tissues. Feel free to be in a bad mood once in a while. The whole chemo process pissed me off royally. People who tried to cheer me up pissed me off royally. People who would call (my mother) and ask how I felt pissed me off royally. I'm being poisoned, how do you think I feel? The good news is that you eventually get over it and become philosophical about the whole experience. And the best part is you get to cheer on others that come behind you.
Aly: It's good to hear my eyebrows are in a better place. Your comment made me laugh.
Joia: Good luck with your first treatment on Monday. I'm glad you were able to come to agreement with your oncologist. I am thinking of trying accupuncture as well. I'm 5 months past treatment but still get tired at night so I don't get much done after work. After swimming last week I talked to a "regular" who is an accupuncturist and she thought she could help strengthen the immune system. She's bringing in her card next week.
Terri.
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Terri: Bless you for the permission to be pissed off. I have never been so angry in my life. If anyone wants to talk about how pissed off they are, I'm a good one to talk to also. I will not go to the "Happy Hut" with the Brownies and eat freakin' Girl Scout cookies. I will not be tranquilized by the human equivalent of elevator music. I WANT to be mad...it makes me happy right now. Maybe all those chemicals are turning me into Oscar the Grouch. I think I'll go ride my bike now. By the way, I'm now getting inflammation on my hands like I have on my lips. The weird mouth rinse is working, though.
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Aly: By the way, I wasn't really taking a jab at you. I just wish I was capable of turning negatives into positives, like you seem to be able to do. But sometimes I can't, that's all. I felt pretty good today. Now, though, it looks as though the Alien that probed me on June 5 laid eggs and the larvae have emerged beneath the skin on my hands. Weird skin stuff. Eeeuw.
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Yeah, I've been kind of feeling like your anger was directed at me but it's Ok, I completely understand how you feel.
Shel the honest truth is I can't turn negatives into positives. Most of the time I'm a "glass half empty" person. Going through this is just about killing me. I think yesterday I was trying to convince myself that there were some positives in all of this even more than I was trying to convince you. Today I feel like the next time my husband asks me "what's wrong?" I'm going to grab a wad of falling hair off my head and throw it at him and ask him if he still has questions.
I'm so sorry you're having so much trouble since your treatment. I hope you will call the doc again on Monday and tell them about these new problems so they can help you feel better. I hate to think of you having such a difficult time!
Hugs,
Aly.
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I have just been told that this is the best regimen for me. I am also very fearful of the hair loss, really freaks me out. Also, feeling tired/nauseous, I have 2 small children. Does anybody out there have small children who have gone through this regimen, how do they handle it, any tips.
Thanks.
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I have just been told that this is the best regimen for me. I am also very fearful of the hair loss, really freaks me out. Also, feeling tired/nauseous, I have 2 small children. Does anybody out there have small children who have gone through this regimen, how do they handle it, any tips.
Thanks.
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I have just been told that this is the best regimen for me. I am also very fearful of the hair loss, really freaks me out. Also, feeling tired/nauseous, I have 2 small children. Does anybody out there have small children who have gone through this regimen, how do they handle it, any tips.
Thanks.
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Shel............I am so sorry that you arent feeling well. Please make sure to call your dr on Monday ok? They need to be aware of how it is going for you and maybe they can help you there. And its ok to be angry. I know exactly how you feel. I cant even tell you how many times I just wanted to stop the treatments. Its normal for us to feel like this. But please hang in there ok?
Aly,,,,,,,,,I know what you are saying too. My family was really supportive and all,,,,,,,but there were times .... I would think,,,,,,,are u f......ing kidding me? Be in my shoes people,,,,,,,,then you tell me how you feel. People who have never gone thru chemo,,,,,,,,well they try to be sympathetic,,,,,but they really dont know what its like. Please hang in there too ok?
Stacey,,,,,,,welcome and I am sorry you have to be here. But this is such a good way to get info and share with others going thru this journey. As far as how you will be feeling,,,,,,everybody is so different. I suggest you tell your doctor every side effect you have,,,,,,,because they can come up with a remedy to help you thru it. And also,,,,,,,,if you have family and friends that can help you out,,,,,take advantage of that. You will need the extra help. When do you start?
Good luck girls. Just know that you are not alone here,,,,,,,we are here to help you. Use us as a sounding board,,,,,,,its ok. You have a right to be pissed off. You can vent here all you want. Just keep in mind the light at the end of the tunnel,,,,,it is there,,,,,it might take a little bit of time to get there,,,,,,but it's there.
Cindy
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HI Stacey,
I have 5 kids- not all little but my youngest is 7. I have always been the person who helped others and my biggest advice is to let people help you- when they ask what they can do, have some ideas ready- bring over a casserole, take the kids for a couple of hours on a rough day, borrow a book, come sit with me at chemo etc.
I also hired some house help- not cleaning the whole house but they clean all 3 bathrooms, my room and do the living room and kitchen floors each week- its affordable with just this list and it maintains the critical cleanliness.
I found a local restaurant that also makes casseroles and I buy several frozen ones to have on hand- heat and serve. Our church also brings over 3 days of dinners every chemo week which is a HUGE blessing.
It is tough sometimes- for me days 2-6 are rough- your experience may be different or different bad days- but manageable ususally.
Kristy
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hi
i am going thorough my second treatmen for breast cancer (first finished september 2006) recently they found on pet scan some nodes involved and node on lung which they removed i received an option for TCH every three weeks i am still young so i deceided to freez embryos because i have no children. is any one at least two years after that treatment and how are you doing so far? iam not worrie about the hair los i went throught that already but trying to figure out if i will be able to work during the treatment. thanks for any responses.
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Kasiamile,
I am so sorry to hear that you have to go through treatment again. I'm 2/3 through TCH, but it's my first time with BC. I hope you get the answers your looking for. You might want to start your own conversation to find someone who's 2 years past it. Good luck and God bless. Mary
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mary,
tahnk you i am reading the comments to kind of prepare myself for new type of chemo see how people are doing on it. for me was kind of suprise i thought i will not see my cancer for long time but well i just have to make my choice Dana Faber or Mass general both in boston and start my battle over again. good luck with TCH.
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Stacey: I have a little one as well. She will be 3 next month. I'm trying not to gauge how I will do just yet because I had such a bad reaction to the Neulasta with my first treatment. I'm going on weekly treatments now without the Neulasta and hope it will be better. I had no major problems with nausea, just some twinges now and then which were easily controlled with meds. I think everybody experiences the fatigue to one degree or another but being tired wasn't so much of a problem for me as my issues with the Neulasta which were also taken care of. Like everybody says, just keep your doctor posted with every side effect so they can nip it in the bud and you should be OK. I hope that you will be just fine!! I will keep my fingers crossed for you!
I hope everybody has a great Sunday! My husband is vacuuming. He probably thinks it's safer than risking me throwing wads of hair at him (lol). I'm getting my hair cut today because it's falling like the Roman Empire. Now where did I put those hats!
)Aly.
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I hope everybody's having a fun, relaxing-as-possible Father's Day.
Kristy: between us, we have 10 kids. That's scary. I counted up and determined that I breast fed for 14 years. (I tandemed the last 2). So much for the contention that breast feeding prevents breast cancer, eh? Anyway, my "baby" is 9. He was probably the most anxious for me. But when I feel poorly, he's the first in there with a prayer of encouragement. All my kids have been awesome, really. My 16 year old son, though, is mercifully on a month-long trip. He has a hard time anytime I feel really badly. He just can't handle me suffering. I too, have issues with being the weak one, since that's not my favorite role. Learning how to receive from others is a postgraduate course I'm taking right now. I have a lot of issues, really, that this "episode" has brought to the surface like a gigantic zit.
Aly: I am sincerely penitent that your face happened to be between my zit and the mirror when I popped it. It didn't feel good to you, I'm sure. And it would have made a spectacularly kaleidoscopic SPLAT on the mirror. I am really happy that your husband is being supportive. Do you think you might be a wig person? I don't think I will. I've looked and acted eccentric all my life, and maybe this is just a chance to let 'er rip. I don't know. When I don't feel like being bizarre, maybe I'll just try to blend in with scarves. I'm no stranger to wearing out-of-the-ordinary things on my head, so maybe it'll be more of a "flow" than I anticipate.
Cindy: Thanks for being such a mom to everyone. And I WILL call the doctor on Monday. This bumpy rash all over my hands is starting to itch a bit and seems like the beginning of the horrible dermatitis I got on my legs from the leg-pumper velcro strappy things they used in the hospital when I had my surgery. (I have a very strong allergy to many plastics and adhesives.) I'm just hoping that the tree goo they get taxotere from isn't chemically related to epoxy resin, which was the occupational trigger of all my allergy problems. I might have to LIVE on those steroids for awhile. My bowels won't move for three months, but I'll probably write a 1000 page novel or something.0 -
Shel: No worries at all. I really do understand how you feel. I'm pretty pissed off these days myself. My husband gets most of the fallout, poor guy. No, I'm not a wig person. I run really hot to start with and everything I've heard is that wigs are hot and itchy and that doesn't sound like fun going into summer. I've got lots of baseball caps and bandanas so I'm good to go. I'm just back from getting my hair cut super short. My hair is really thick so despite the massive fallout I don't have any bald patches yet so we just cut it short to ease the transition and we'll see what happens over the next few days. I may be back in for a buzz. And my daughter's reaction? She couldn't care less. I've been worried for nothing, as I suspected.
) You know, you and I are the same with regard to skin sensitivity. I had a horrible reaction at my chemo I/V site. About 3" on my arm turned red and got hot (no infection thank goodness) and where the adhesive was from the tape that held the I/V is bright red and looks like a burn scar. I'm horribly sensitive to adhesives as well. I hope that your doctor can give you something for the rash and the other side effects you are having.
Cindy: I should say thank you too for always being so encouraging with everybody. That's sooooo sweet of you.
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Kasiamile, I am so sorry that you are having to go through all this again.
I am starting TCH tomorrow at Dana Farber. It is ironic that I moved to Boston to be near friends and go to the Dana Farber, but am not going with my oncologist's recommended regiment (check a few posts back).
If you do end up at Dana Farber, send me a private message. It seems like I will be there often enough and our paths might overlap.
I am spending tonight cooking (brown rice, spinach and zucchini soup, smoothies) so that I will have prepared things on hand in case I don't feel like cooking (I live alone and don't have anyone to cook for me
)Will also pack my bag for a loooong day tomorrow with my first tx. Crappy thing is that when I had a chest xray on Friday so the tip of the port could be located (it was put in in a different hospital), they saw something "suspicious" on my lung. My oncologist said that there is a good chance it is nothing, but sent me for a chest CT on Saturday. I am really hoping it turns out to be nothing.
-- Jo
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Joia,
So sorry to here about that damn chest x-ray!! Just what you need, to worry and wait again about another thing!! Hope it goes well for you!
Kasiamile,
So sorry about the BC once again. This is my first time though. I've only been through one treatment of Taxotere/Carbo. and 3 herceptin, (Plus neulasta). I've not had the bad reactions like Shel and AlyMarie. Mine was mostly indigestion, major bowel issues, terrible taste in my mouth, and a lot of fatigue. After about 10 days, my taste came back and so did my energy. I can only hope this lasts for my next 5 treatments!
If you don't mind me asking; what were you treated with before?
Hang in there!
Donalee
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Shel,
You should seriously write a book or a screen play! I love the way you write! I love to read and am always looking for a new author, I could proofread the thousand page novel for you! (hahaha)
I just finished reading Duma Key by Steven King, it was really good. I like to paint and it was all about an artist. Have you read anything good lately?
Donalee
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Jo...my prayers will be with you. You won't have any reactions like mine. I have my onco nurse stumped. I think they're going to run some DNA studies, first to find if I am, indeed a carbon-based entity and second, to verify that I am human. My reactions have been just about that weird. You are so proactive, and it looks like you're into healthy stuff. You may find, however, that there may be a couple days when the only thing that sounds good is Jello Instant Pudding. I would put a few boxes of that in your pantry and maybe some popsicles in the freezer.
Donalee, OMG. (I write poetry too, cancha tell?) Duma Key is actually one of my favorite books, because I, too, am a painter. I just finished The Girl Who Stopped Swimming by Joshilyn Jackson, which was a good page-turner. But during my recent bout of piss-offedness, I returned to my old friend, Charles Bukowski. His first book, Ham on Rye, is the closest thing to a secular book of Job you can find. It's easy reading, but if you are easily offended, please don't read Charles Bukowski. Have you read Cell by Stephen King? That one is awesome, as is Terrorist by John Updike. I could go on and on....And as for me, I HAVE written a book and was just getting started on the major rewrite suggested by my editor when the feces hit the oscillating blade, so to speak. Dealing with four surgeries, five kids, and teaching tends to take the creative wind out of one's sails. I have a feeling, though, I'll get back on it this week. If I don't, kick my butt, OK?0 -
Welcome to all the new ladies that have joined this thread. I think it's great that you are all going to be able to share experiences and advice at the same time.
Kasiamile: I worked throughout my treatments, but from home. I wanted to be able to deal with side effects as necessary. And I took a nap every day after work. Sometimes work ended at 3 since I was tired, but for the most part I worked full time. I took treatment day off and never once had to "call in sick". I did take two weeks off after treatment #5 since that was at the end of the year and I had been saving up my vacation specifically thinking the later treatments would kick my butt. Turns out #4 kicked my butt.
Jo: Good luck tomorrow. Also stock up on jello. Jello is considered water so when you can't face another glass of it you can eat some jello instead. I also didn't have anyone to cook for me. I had a lot of cravings and they kept changing. A couple of times I called a friend and asked her to do a food run for my latest craving.
My PET scan showed a couple of really small spots on the lung as well. My onc thought it was probably scar tissue. I had a follow up chest CT in April and that showed no change. I will have another one in October and if there is still no change, I'll start having one every year. I hope you get good results.
Shel: I hope you find some good eccentric headcovers. I met a woman at one treatment who was wearing a magenta wig (it matched her sweater). She also had a blue and lavender one.
Terri.
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Hi Michele
I was all signed up and ready to go on the Phase 2 Avastin trial and then a CT showed that there were a bunch of nodules in my lungs. They said I would have to undergo a lung biopsy so they could rule out cancer and I refused because it would have set my start date back for the chemo. So, no Avastin trial for me.
Clinical trials are so important and one reason I wanted to do the trial was because they monitor you so well when you are part of a trial. You get a lot of extra tests at no extra cost. And they follow you closely for 5 years. And Avastin has been working for colon cancer.
Ask them about your blood pressure though...i sat next to a woman in the treatment room who was in the trial and she said they had to cut back her Herceptin and take her off the trial because of high blood pressure. It may have had absolutely nothing to do with the Avastin but I would look into that before I signed up........
Leslie2
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Hey all. Could someone remind me again what supplements you are using that are supposed to help with your hair and nails?
Thanks!
Aly.
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hey all
again what happen with nails during TCH i kind of missed that in reading. thank you all and good luck with treatments. remember pets scan really helps a year after tretment to see if the is something going on. i found my by luck going to pet scan.
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Terri; I went to Urban Outfitters today with my daughter and her friend and, among other things (like my checkerboard pattern suspenders) I got some eccentric headware. They have these big, soft beret things in different colors that would feel good against a bare head and cover everything.
Leslie: Herceptin causes high blood pressure? Didn't hear about that one.
Aly: Don't know about supplements for the nails, but I intend to keep up with the manicures and pedicures so I don't know how horrible they look:) Do your look bad now? At least my hand rash is going away.0 -
Hi Shel. No, they don't look bad yet, I'm just being proactive. Everything still looks fine.
) I'm glad your hand rash is going away, that's really great news!!I've been busy (stupidly) scaring myself reading all the posts on other threads about recurrence and people fighting their second and third cancers, etc. I'd love to know how everybody keeps themselves sane while going through this. How do you control the fear and worry? I understood from my Oncologist that recurrence is not the norm but holy cow I'm just about scared to death right now!
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Thanks Shel, Terri and Donnalee.
Aly, stop reading! I only read enough to make decisions about each step of this process. I don't read ahead. And reading about recurrence is reading ahead.
The CT chest scan came back all clear. The "suspicious" thing in the chest xray was nothing.
I am just a couple hours out of my first tx of TCH today. It went well. No reactions to any of the drugs. I am still pumped up on Decadron. I am taking that the day before, day of, and two days after tx. I got four hours sleep last night, but will take Ativan tonight in order to get more sleep.
I get my Neulasta shot on Wed. On Wed, I have planned to do a Look Good, Feel better class, get my Neulasta shot, go to a nutritional counseling appt, and take a drumming class in the evening. It might be too much, but I'll see how it goes.
My ex-not-quite-bf accompanied me today. I was such a motor mouth due to the steroid, he kept teasing me for babbling (I am usually fairly quiet). Finally, he left my bedside and went and took a nap in an empty infusion chair as I worked on my laptop.
The nurse was far more encouraging than my onc about how I'll fare on treatment. My onc recommended AC/TH because she said I would feel more "wiped out" on TCH. In the end I decided on TCH. Well, today, the nurse said that in her experience women have fewer side effects on TCH. Let's hope she's correct. She told me to take Sennakot tonight to ward off any constipation issues resulting from the Aloxi (anti-nausea medicine) in the IV drip.
I had lost a lot of weight in the past few weeks and I took advantage of my tx time to snack on the free food (veggie sandwich, fruit cup, Odwalla bar, various kinds of teas). I am vegan (I don't eat or wear any animal products for ethical reasons) and I was pleasantly surprised that they had those vegan-friendly foods. "Dana Farber Cancer Institute: Come for the Food, Stay for the Chemo."
--Jo
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Nails: I was told to use tea tree oil on the nails. I used a Q-tip to paint my finger and toenails daily. The big toenails got horizontal ridges. Around treatment #5, some fingernails started showing a "bullseye" under the nail (I found a picture on the web and matched it to my symptoms). As those nails grew out they got brittle and tended to split.
I was also told to use Udderly Smooth on my hands and feet.
I never had any nails turn black or fall off.
Others have metioned biotin to help with hair and nail growth. I now take a multivitamin with biotin. My hair is ignoring it and growing at it's own pace.
Shel: I'm glad you were able to find some hats that suit your personality. I stocked up on lands end fleece watch caps and wore matching fleece sweatshirts. They were my most comfortable every day hats and sleeping in the winter hats.
Aly: I know what you mean about scaring yourself thinking about recurrence or something less than a "cure". I deal with it by being in denial most of the time. The odds were so against me ever getting this disease, let alone being HER2+ that I don't believe in statistics anymore. I didn't have breast cancer. I was being treated for breast cancer. And since I've done surgery, chemo and rads, dammit, everything had better be gone. I've done my part; cancer must cooperate! Yesterday on the Komen forums there was a post about a young mother who passed yesterday. I let myself cry, convinced myself that our situations were different enough (age, stage of disease, etc.) and move on one day at a time.
Jo: I'm glad you had a good experience with your first treatment. And congrats on the clear chest CT! One less thing to worry about. Definitely take the sennoket-s (the S version has a stool softener in it). I learned to start taking it the morning before my treatment and then for several days after. The Ativan will help you sleep despite the steroids so I'm glad you have a prescrip for that. I think you'll get through Wed. fine but may crash after your drumming class. I had my treatments on a Monday and by Wed. evening I could feel the energy just drain out of me.
Terri.
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joia,
ya. I'm the same as terri. I had my tx on Monday too and by late Thursday morning I was done! Pretty much slept all day. I thought it was coming down lff the steroids but the fatigue got worse each day until around day 10.
Donalee
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Terri: I almost *wish* I could be in denial instead of scaring myself silly with every negative thing I read. I'm certain there's got to be a TON of women out there who get through this the first time and never have a recurrence the rest of their lives (my mother being one of them) but it seems sometimes like people only bother to post the negative stuff and not so much the positive. I would love to hear more "happy ending" stuff, you know? I'm getting my chemo port put in tomorrow morning so I guess being scared about that is making me scared about everything right now (sigh).
Aly.
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