Taxotere, Carboplatin and Herceptin
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katymom, that's strange that your onc doesn't think the bone pain is femara, that is the most common side effect for the medication. I used to wake up in the morning and not even be able to walk or standup straight. at one point my lower back pain was so bad the radiation oncologist made me get a MRI of my back to look for mets. thankfully that was negative. Since switching to the aromasin, my joint pain is ALMOST gone. I still have a bit of stiffness in my hand joints, but joint swelling seems to be going down. I almost couldn't get my wedding rings on because my joints were so big! the morning stiffness is soo much better. I wouldn't say that I feel completely normal, but definately much less miserable. I haven't done too much of a literature search on aromasin vs femara, but it looks like many of the original studies were done with aromasin,so i'm just going to trust my onc when she says they're the same (my rad/onc said the same thing). Plus it comes down to quality of life and there is no way that I could keep going with all the joint pain.
cindy-I'm on herceptin until may 08 also. my MUGA keeps consistently dropping but it is still within the normal range, so my onc wants to keep going. i'm totally asymptomatic so that's always a good sign.
Happy new years everyone! I hope 2008 is a better year for all of us!
Leslie
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Hey girls,,,,,,,,,,,,,Happy New Year to you all.
Katy,,,,,,,,,,,I am ER-........so no tamoxifin for me. Just got back from my daughters house,,,,,,,,watched the new year come in with them. We played Wii,,,,,,,,omg what a fun thing. I think I will be sore in the morning though,,,,,you actually get a pretty darn good workout with that game. We played tennis, bowling and baseball. Very very fun.
I'm a lil tired so it's off to sleepy time I go.
Have a great week all,,,,,,,and again,,,,,,,,,happy New Year.
Just want to add also,,,,,,,,,that I thank all of you for being here this past year. It has helped me a great deal on this journey.
Love, Cindy
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Hello All,
My sister was just diagnosed with ER neg anf Hers2/neu positive breast cancer. She had a lumpectomy and her nodes are postive. She is ging for auxillary dis. soon. Anyone what to comment on AC followed by TH vs. TCH? We can't decide which to go for. I think she is leaning toward the AC followed by TH.
Thanks, JK
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Hello girl from Philly,,,,,,,,,,I did the tch,,,,,,,so to be honest I dont know much about AC. Did her doctor give her a choice between the two? My doctor didnt give me a choice,,,,,,,,she just said that for me and the type of bc that I would benefit from TCH. I also was ER neg and HER2 positive. So thats a good question,,,,,,,,I wonder if maybe given two options by her doctor,,,,,that it might benefit her having a second opinion. Just a thought. I wish your sister good luck,,,,,,,,,and have her join a thread here with others that are starting the same time as her. This site was such a great thing for me during my chemo and even now. Its nice to share with others that are going thru the same thing as you. Great wealth of information. Good luck to her,,,,,and kick some cancer butt. God bless.
Cindy
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I've been lurking here for the course of my treatment. It has been very helpful to understand how others dealt with their side effects. I am extremely happy that I just had my last TCH treatment today. It's time for the side effects to go bye-bye (and I've had all of them).
GirlfromPhilly: I had a choice between AC/TH or TCH. I'm ER+/PR+ and HER2+. I had one sentinel node removed and that was negative. So there are some differences between my dianosis and your sister's that may impact her decision. When I first met with my oncologist, she talked to me about the AC/TH option in detail. She did mention there was another option, but we moved on to a discussion on genetic testing and didn't go back to the alternative option. When I met with her the second time she spoke more about the TCH option and it's side effects. She did say that AC/T was the "gold standard" but more doctors were moving towards TCH for HER2+ patients because of the possible effects on the heart from taking "A" followed by Herceptin. My doctor felt both options would provide me with the same outcome and I felt that, at the age of 44, I wanted a treament that was less likely to give me heart damage and provide a poor quality of life for the long life I see ahead of me. They monitor the heart with Herceptin. I go for my second echocardiogram on Wednesday.
So I weighed the similar outcomes, less chance for heart disease with TCH, 16 weeks AC/TH vs. 18 weeks TCH -- at the time I wasn't happy about an extra two weeks. But now I realize it's the number of treatments that take the toll (at least for me mentally) not the number of weeks you are in treatment. Six treatments were enough. I don't think I could have taken eight. I do think TCH is tolerated better than AC/T but I can't say for sure since I didn't have to take the red devil.
I agree with Cindy's post -- a second opinion can't hurt. You will probably want to read through this complete thread to see what kind of side effects people get and do the same with an AC/TH forum.
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I am only on my 2nd round of taxotere and have completely lost my taste; everything tastes awful. Were you able to find any food you could eat that tasted OK? I could sure use some help here. I love food and am about to cry because the thought of eating just makes me not want to eat. I have tried the lemon drops, yogurt (chemo nurse said to try that) but nothing is helping at all. Thanks for any help you can offer.
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Hi jan,,,,,,,,,,,I also had that weird metallic taste and nothing tasted good to me either. About the only thing that semi tasted ok was,,,,,,,milk and I drank shakes. The lemon drops just didnt do anything for me. Towards the end of all my chemo,,,,,,,I ate nothing for like a week and had lost 8 pounds. Be careful ok,,,,,you may just have to try different things and see what is good for you. Typically I would get my taste back the week before I had to do chemo again. lol Be patient as your taste for things does come back after all of your chemo. Hang in there girl,,,,,,,,,,,there is light at the end of the tunnel,,,,,,,I promise you that.
Leslie,,,,,,,,,are you here girl? I hope all is going well for you. You must be busy getting on with your life after BC,,,,,,,,I dont blame you one bit. As I am doing the same,,,,,but like to pop in here from time to time.
I am doing very well. Got my first mammo since all this started and it came back clear. Happy day thats for sure. When you have time,,,,,,,,leave a note so I know you are doing ok.
Andddddddd Nan,,,,Carolina,,Katy,,,,Chemo,,,,Janet,,,Mrs,,,,,Lg,,and if there is anyone I missed,,,,where are you? Please drop a note girls ok??
Cindy
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hello girl from philly: I compared the ACTH vs TCH before we decided to go with TCH...you might look at the study BCIRG006....I think the website is BCIRG.org....it compares the 2 treatments. Adriamycin has a big heart effect and so does the herceptin...my main reason for TCH....results of the two looked similar in the study.
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Cindy:How are you doing? I can't wait for all this to be over....herceptin is a piece of cake, but I still have the femara...I'm doing better on it so I will hold off on switching to see if it levels off. Glad Leslie is doing well on aromasin....and Cindy you are lucky you don't have to have any of it!
I haven't been on as much as usual, but let's not lose touch. You, Leslie and I have been on the same track for nearly a year!
Katymom
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Quick question for everyone: I had my lumpectomy last February. Since then my nipple has been irritated...almost like a paper cut or something like that. I thought it would heal after chemo and radiation, but it still seems to be a problem....any ideas or thoughts. My onc is puzzled as well......
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Hi ladies,
sorry i've been missing lately. i love this thread and it's the only one i go to when I visit this website. I'm back to work full time and they are really working me full time. so much for easing back into things! I'm so glad that you mammogram went well cindy. I got my first breast MRI since my diagnosis this past week and it also came back normal so i'm very grateful for that. katymom-i don't know what to make of your nipple. does it look funny or does it just hurt? if it looks different, may want to see a dermatologist to make sure it isn't paget's disease (sometimes seen with breast cancer). but if it looks okay but just hurts, perhaps it's just the nerve. it never hurts to get a second opinion so if your doctor doesn't know what it is, perhaps you should ask to see someone else who may know.
hope everyone is having a great new year! I'll stop back soon.
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Hi, Girls!
I have been AWOL for a few weeks, but I have been in rads hell. Physically, I am tolerating the treatments well. I have some minor irritation, but the toll of going there everyday (it is an hour commute each way) coupled with FIVE snowstorms (do you think even ONE could have been on a weekend) and daily break-down of the machines (one day I was there for FOUR hours waiting for my appointment) has just about done me in. Thank God I only have five more treatments!
Welcome, GirlFromPhilly - I too was almost doomed to the AC fate - and I did NOT take it and I am so glad that I opted out of that! TCH is better tolerated and in the long run will be shorter because she can start the Herceptin right away, whereas with AC her year of Hercpetin will not start until after she finishes her four cycles of AC. And then, as other ladies have mentioned, there is significantly less risk for cardiac damage and future development of leukemia. Those were all big decision factors for me - and I have to say that I really did not have a bad time during my chemo. I am not saying that TCH is all sun and roses - I still lost my hair (mostly on my head...a little brows and lashes) I was tired and I had chemo mouth for about a week after each treatment - but other than that, it was nothing compared to what my AC counterparts went through. I wish you and your sister the best in this unfortunate journey.
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I found I could normally eat raw celery (the crunch felt good even though it didn't taste like much). Couldn't handle anything sweet, salty, spicy, acidic, etc. Raw veggies were good. And I could normally eat a hamburger or steak (wierd, isn't it)? as long as there were no spices on it.
Most often, I could eat fruit juice 'popsicles'.
When things were at its worse (that 6th cycle for me), I had a few days where I could keep nothing down because even water (which I LIKE and is my main drink) tasted disgusting. But I tried to keep sipping it and just kept reminding myself that the really disgusting taste normally didn't last longer than 3-4 days each cycle.
I had a lot of dinners where I had a hamburger grilled and steamed veggies. I probably ate more healthily then than I do normally (*smile*).
Good luck. This too will pass!
Janet
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hello to everyone. i've been reading this thread for a while and need to go back and reread. I'm starting tch on thurs 1/17. they're giving me the herceptin first and then the taxotere and carbo on fri. booster on monday. splitting the two for the first treatment. anyone else do that? i will have 6 treatments, three weeks apart, herceptin for the remaining year and 5 wks of radiation.
i'm er- pr+ and her2 borderline but being treated as positive. next week is full of appts and tests for me before the big day thurs. my mind is whirling thinking about all i need to do and trying to figure out what to expect with the side effects.
i just read your post janet about eating raw veggies and i was told to stay away from anything raw that isn't peeled. i love salads and this really bummed me out.
have many of you been working through all of this? i seriously need to be able to work--even though i'd love not to. i'm really thankful for this thread and being able to read about the experiences of you ladies on the same meds as me!
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Hi all, I'm new here. It's so interesting reading the experiances others are having and how they are dealing with them. One side effect I'm having that I don't hear much about is watery eyes and blurred vision. My Dr peercribed eye drops which haven't helped much. They water so much when it's cold outside, tears roll down my cheeks, it looks as if I'm crying. His other suggestion is having stints put into my tear ducts. That seems a bit extreme and since I only have three more treatments to go, I'll just deal with it. Just wondering if anyone else has/had the same problem.
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Jan 58 - Your question about what foods might tasts good...sorry to say there isn't much that I've found. It's so unfair, my appetite has increased and food tastes bad for about two weeks after treatment. I've had 7 rounds and so far the only thing that doesn't repulse me is a chedder chees soup my mother makes. It has chedder cheese, ham, mushrooms, carrots, onions, milk and cornstarch.
I've tried the lemon drops that are supposed to taste good and nearly gagged. Peppermints aren't too bad. I havn't had any nausea, just extreme fatiuge and body aches three days after treatment that last two days. I have my chemo on Wednesday afternoons so I have the week end to crash. I'm still able to work 40 hours a week. I have three more rounds to go. For me, loosing the sense of taste has been the hardest side effect to deal with. Thank goodness for mothers and their chedder cheese soup.
Fawn in Houston
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Hey girls,,,,,,,,,,,,,so glad to see you all post. Katy and Leslie,,,,,,,,nice to see you are doing well. And good news for you Leslie on your MRI. Katy,,,,,,,I know what you mean, I also cant wait to not have to go anywhere, even if it is every 3 weeks. Have to have my echo again this month,,,,,,,all the ones I have had done so far are good. Katy, dont know what the nipple irritation would be actually. I wonder if it could be a nerve thing. If it persists, I would definately want some answers huh?
Nan,,,,,,,,,,,good to see you post too. Im sorry that rads are turning out to be tough for you. I cant imagine having to drive that far for them every day. Hang in there girl,,,,,,,,,you are almost done.
How's everyones hair coming along? I have about an inch now,,,,,,,,whoopie huh? lol Sure is fine though,,,,,and seems thin. On another thread they were talking about taking Biotin........so I bought some today and started taking it. Hope it helps,,,,,we shall see. Still not long enough to go topless though. Wayyyyyyyyyyy to short for me. lol I thought I would only be wearing my wig for a few months,,,,,,,,,,little did I know I would be wearing for over a year.............sucks.
FTG,,,,,,,,,,I also had the watery eye thing. My onc gave me a presc too,,,,,,but it didnt seem to help. It will go away though. As far as what to eat,,,,,,,,,,pretty much everything tasted shitty to me. I drank milk, had shakes,,,,,and also mashed potatoes were ok too. Other than that,,,,,,,,for a couple of weeks after chemo, nothing tasted good. Got the taste buds back the week before chemo,,,,,,so at least I had a week where I could eat. lol This soon shall pass for you ladies,,,,,,,,,,just keep in mind the light at the end of the tunnel. Thats what kept me going.
Take care ladies,,,,,,,,and so good to hear from you all
Cindy
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Sista2: At "chemo teach" I asked about avoiding fresh fruits and veggies. I was told I did not have to. I still played it safe and have not eaten many raw things -- peeled apples, clementine tangerines and bananas are about all I eat raw.
RE: Working while undergoing treatment. I have continued working. I asked my manager if I could work from home and he was agreeable, so that has made a huge difference. I spend my day on the computer and on conference calls so it isn't physcially taxing. I got hit hardest with treatment 4. I moved from the desk to the sofa in my office during that cycle. I also took two weeks off around the holiday anticipating treatment 5 (Dec. 17) would be bad. (Turns out #5 wasn't as bad as 4). I usually get tired the first week after treatment and end my day a bit early with a nap.
Fawn: I am suffering from blocked tear ducts as well. They started around treatment 4. I too have decided to wait it out to see if they clear up. The thought of getting shunts is not pleasant. I finished my last treatment a week ago (Jan. 7). I will let you know when/if my eyes fix themselves. I've been told they should clear up on their own.
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Hi, Girls
Kinda a bad day here - I should be on the last 4 treatments of rads, but we are getting hit with a snow storm which will likely prevent me from making my appointment tomorrow. The really crappy thing is that I get that day added on so I should finish Fri instead of Thurs...BUT there is ANOTHER storm on Friday and there are no Sat or holiday appointments, which means I won't finish until NEXT TUESDAY. I HATE THIS! Haven't I earned one get out of rads free card yet?
Cindy: I have been taking Biotin for about a month now, and I think that coupled with the Nioxin hair products, it is helping. I am not ready for topless (won't be cause I don't do short hair!) but the growth seems to be kicking in. It is hard to tell exactly how much I have because it is so fine, but I would say that I am at 1/2 inch.
Sista & Fawn: Welcome! Glad you found us!
Sista: I had not heard of splitting the treatment into two days. I had everything on that first day (herceptin-carbo-taxo was the order), but maybe since herceptin is an antibody, they want to keep an eye on allergic reactions. Sounds like they are being really cautious, but they give you tylenol and benadryl in your pre-med cocktail, and they do a great job of keeping any would-be side effects in check. So, don't freak out if no one else had a split treatment - it just sounds like they are being very cautious. I know the first time is really overwhelming - but just think of it as one down. Countdowns are sometimes easier to comprehend!
Fawn: I had the eye thing as well. Some days were so bad, that I could not wear my contacts. My last treatment was 10/31 and although it has gotten much better, I notice that my eyes are still a little sensitive to light and I wear sunglasses when I drive. It does pass, as does that horrific chemo mouth. About a week after treatment, I would have this constant metallic taste in my mouth and food would have no taste. One would think that I lost a lot of weight, but having no taste was better than the metallic taste, so I can't say that I stopped eating! My nausea was very well controlled with zolfran (compazine gave me an adverse reaction where I felt like I was going to crawl out of my skin).
Sorry to sound like such a whiner about the rads thing - but I can't take much more of this. Mentally it is so completely draining, and the thought that weather can extend my sentence is enough to put me over the edge. Glad I have a place to come where I can vent and people "get it."
Lots of Love to Everyone....hope we hear from Carolina and GoodVibes soon!
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Nan, I had radiation 9 years ago for Hodgkins. 5 days a week for 2 1/2 months. I looked like I had a severe sunburn in the middle of winter. The sore throat was the worst part, but the Doctor gave me a liquid he called a mucus cocktail that numb my throat so I could eat. I still have 9 little dot tattoo's to remind me. I thought about having them removed, but glad I didn't. My oncologist now said it helped him to know exactly where I had received radiation.
Has anyone been told that they'll have to have Herceptin for the rest of their life? My Dr. just told me last week after I had my 7th chemo treatment. I thought I only had to sit in that chair for three more chemo treatments, now he says I'll have to continue with the Herceptin every three weeks and it's only given intravenously. I'm having a hard time accepting this. I thought after chemo I'll have reconstruction and be done with it. Is my only hope that modern medicine will eventually come up with a pill form?
Fawn
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Fawn- forgive me for asking as I'm sure you have mentioned this before but what stage are you? I have only heard of herceptin indefinately for those ladies with more advanced breast cancer. for earlier stages, right now I've heard 1 year. studies are still out on whether two years is more beneficial then 1 year.
Leslie
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Leslie, I've had a modified radical mastectomy of the left breast. I'm not sure what stage, but in the beggining I was told 2B. That was before the PET scan showed it had spread to my liver. I never asked what stage that put me in. I had 20 cancerous lesions on my liver before chemo, now I have only two. I think this is why he said I have to continue with the Herceptin. He said he has another patient that has been on it for 6 years. I'd like to get a second opinion.
Fawn
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sista2,
Re the raw veggies. My blood counts stayed high enough that I simply washed the veggies and then didn't worry about them (and ate them). Also, other raw veggies I liked: frozen peas. They are processed (so not really raw), but I'd take them out while frozen and just suck on the peas until they thawed. Yummy. (and wierd, but the cold felt good).
I'm a salad lover too, but the first thing that "went" while on Taxotere was vinegar. Anything with vinegar tasted HORRIBLE. And I love vinagrette dressings. (*sigh*). Had to wait until after chemo was finished to enjoy a salad again.
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Peppermints were too strong for me. Yes, for me too, the taste changes were the most difficult part of chemo.
Re the tears. I just lived with runny eyes for a few months. It took (I think) 2-3 months after chemo ended before I noticed my eyes weren't running any more. Yippee. I couldn't believe how wierd it was to have tears start to run down my face for no reason.
I used non-prescription 'tears' eye drops at night when my eyes would get very scratchy and dry. And I never went anywhere without tissues for the tears. It was such a silly side effect, and nothing (to me) worth doing anything drastic to fix.
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TF8: I was lucky too in that my manager let me work from home. During chemo, I simply moved my laptop from upstairs to the kitchen table (so I didn't have to climb stairs). And whenever I felt well enough to work (most of the time), I got quite a bit done.
My management was amazed that I got so much accomplished, and I felt so much better since I had something to keep my mind OFF my aches and pains. And I was at home, so i could easily rush to a bathroom, take a pill, and not spend 2 hours each day commuting.
I ended up working at home for 6 months (through surgeries, chemo, radiation). Then after I started going back to work, they re-organized and I now work from home full time permanently (*grin*).
I really think that working through treatment did help me feel better. It was a better distraction than daytime tv!!!
Nan, good luck with your radiation. Wish you could send some of the snow here (Dallas area). We saw a few flakes one day in November, but that was it. Also, good luck with your hair!!!
To everyone on Taxotere, Carboplatin, Herceptin: My best recommendation for "sewer mouth" is Biotin mouthwash. For a few days of each cycle, I felt like I had cleaned the sewers of Dallas with my tongue (sorry for being so disgusting, but the taste in my mouth was equally disgusting). After the first cycle, i found the Biotin mouthwash (didn't like the toothpaste much though). i went through about a bottle of the mouthwash every chemo cycle.
But a side effect: when I went to the dentist after chemo, he was shocked. I had the BEST dental checkup I had had in years due to being so assiduous about cleaning my teeth and mouth during chemo.
Janet
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Fawn,
If you haven't been there before, go to http://her2support.org/ and go to message boards. You'll find lots of people there who have been on Herceptin for years and expect to be on it the rest of their lives.
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Fawn, I am sorry to hear that you have a long go with herceptin. I hate that it is an IV drug - so you are not the only one wishing for a pill...a patch...anything but needles! I have heard that some women are on herceptin for life - or in the words of their docs..."as long as it works." I think that the mets to the liver puts you in a different staging, and that is the reason for the longer treatment. Make your doc explain his reasons for putting you on long-term herceptin, it might help you understand where he is coming from.
Janet - I sent you a truckload or two of snow - check the mail it shold be there any day now! Thanks for the "hairy wishes." My mom (the only one who has seen me topless) thinks it is growing really fast, but I am not going to be satisfied until it looks like it did before chemo. Unrealistic, I know - but with all the changes that cancer brings - it seems like all I want to do is get back to normal...normal hair, normal weight...normal skin!
TF, Congrats on your LAST chemo! Joyus day for sure! I lurked here for quite some time before I was ready to read and post. I don't venture too much to other threads because I got quite comfortable with these ladies.
Hope everyone is doing alright - I have TWO rads to go and come hell or high snowbanks, I plan to make it in for that last one on Friday!
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hi everyone,
havent checked in in a while. Barb had her last chemo on 12/26. YAY! Her first "herceptin only" drip was yesterday. A real hurdle to be over. YAY! She has her breast reconstruction "tune-up" next Tuesday and returns to work on Feb 1st. YAY! Her hair is starting to grow back too! YAY!
What a long strange trip its been.
GOOD VIBES!!!!
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Good Vibes: It sounds like I am 12 days behind Barb in terms of treatment. I'm happy to hear her hair is starting to grow back. I'm excited at the prospect of having hair come in in 12 days or so..... Like Nan, I'm tired of all the changes this ordeal has put me through. I want to stop looking like a freak!
I went for my rad set up appointment yesterday. Still trying to scrub off the sharpie marks... I got two tiny tatoos and will get a third at my next appointment. I have Herceptin only on Jan. 28, rads simulation on Jan. 29, first rads Jan. 30 and will end rads on March 14. Ye gods. One nice thing is that the rads center offers free massages weekly (or every two weeks if there are too many people taking advantage of the program). Also, there are two rads centers that the staff work at so if one machine breaks down they can send us to the other center for our appointments. They are both about five miles from my home so my "commute" won't be as bad as Nan's.
Janet: Lucky you for having a permanent work at home situation now. I've always worked at home at least part of the time -- I have yet to go into the office on a Friday. No way am I dealing with Friday traffic. But I've been working from home all the time since September. I am not going to enjoy having to go to the office again. I keep hoping the company will decide they want to save money and send us all home.
Terri.
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Hey girls,,,,,,,,,,,,,,havent posted in a while. Took a lil vacation to Arizona to visit my girlfriend that I have known for 44 years. Had a great time,,,,,,,,chatting, watching chick flicks, drinking martinis and did some touristy stuff. Was nice to get a way for a few days,,,,,,but also sooooooo nice to be home too. I miss my family when I am gone.
Sounds as though everyone is doing good. Cant wait for May to be here to be done with herceptin. Hair is coming back in,,,,,,slowly,,,,,but coming in. Started taking Biotin as some people say it seems to work. So we will see. I did dye it though,,,,,,,,,the gray was just buggin me.
GoodVibes,,,,,,,glad your wife is done with chemo. Herceptin is a piece of cake.
I did see someone posted on another thread that herceptin will slow the process of hair growth. Has anyone heard that also? Maybe thats why it is taking so long.
Well ,,,, gotta go get my son from work. Have a great week all,
Cindy
Hi Lesle and Katy!!!!!! Hope you two are doing well. We go way back huh? from the beginning,,,,,,,,
Hi Nan also,,,,,,,,glad rads are just about done for you. Of course they may be done by now. lol
Take care,,,,,,,,,,,
Cindy
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