Taxotere, Carboplatin and Herceptin
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Amywolfe, you will find at the top of the chemo boards several posts that are permanent. This should be everything that you might need to know. You will not have all the side effects that are listed but you might have some. One is the hair loss. You may not lose all your hair but most lose enough it is not worth dealing with so just plan on it. get your wigs, scarfs hats whatever you feel good in. I never wore a wig but wore hats and scarves. I am sure you will get lots of information here. We are so lucky now that we have Herceptin which you will take for a year and it did not bother me a lot but I would feel bad on the days I took it but most don't. It gave me a bad taste and the TC will more than likely affect your taste. Do drink lots of water while on chemo. You must wash the poison out of your system after you get it because it can damage your kidneys and you need to stay hydrated too. As for food you will find what you can tolerate and it depends on the nausea meds he gives you how you feel and also how you react to them. A friend who goes to church with me ate normal and very seldom felt sick but I was sick from the first infusion and I can just think of some things now and get sick. Mental I think! So you did not have chemo before? Did you have radiation before? My sister in law had radiation but no chemo years ago and so I am not sure what her path showed. We are not close. This is doable but it will be a fight and remember it is a fight for your life. Lots of women go through this and make it real good and have lived very long lives. You will too! come here for questions, rants or just to see how everyone is doing. seems like when one starts here a couple more start. I know usually there are some that are even on the same schedule from different parts of the world. I am old here but try to check in on everyone as do some of the older ones. If you have a chance go to chemo school. they gave me a neat book that answered a lot of my questions but still you will not understand it until you do it. I will be thinking of you and you can PM me for anything you don't feel comfortable talking about here. I had some weird problems but I was not the only one so just remember that. You are not alone. We are all sisters!
Carolyn
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I started TCH on June 14th 2010. I have 6 rounds once every 3 weeks. My 4th round is this Tuesday. Ugh! My hair started falling out around 2 weeks after round 1 and on the 19th day.. I shaved it. My head hurt! And shaving it made the pain go away. Weird! I had long hair.. middle of my back.. That was the most devistating part. I cried... I still really wont go out with friends, or to many public places. I do have a wig, but I know alot of people in my area and I just dont want to run in to anyone and have to explain. Even though I have wigs, ( which by the way. I HATE.... Itchy and sweaty)Its still NOT ME! I am starting to get about 1/4 inch of peach fuss right now... I am hoping it will keep growing. I had a single mastectomy by choice.I wanted to minimize my chances of a reoccurance. I am in the middle of reconstruction and actually excited to get new boobs! I had no node involvement but I am ER+/PR+/HER2+ so I do have herceptin for a year. The herceptin has no affect on me.. The TCH I get on Tuesday mornings, Wednesday morning I go in for the fabulous Nuelasta shot, and by Wednesday afternoon I am laid out until usually Saturday or Sunday... I refer to it as 10 days down, 10 days up and then back in for the next round on day 21. I feel great and normal 10 days after my treatment... But right afterwards... days 2-3, I feel like I have the flu.. Achy bones bad... sore muscles and weak. No vomiting though.. I have never thrown up. I have felt nautious, but the nausea pills work good! I get metalic taste in my mouth, mild mouth sores on my tongue and my lips feel like they are dried out and burned. I take vitamin B6 and lysene vitamins which have helped. I also use Biotene mouthwash which is mild and restores moisture... I drink alot of water and sports drinks as well. I actually love 7-up or orange soda during that week. The carbonation helps the dryness in the mouth. I have gained about 5 lbs... but seem to loose about 2-3 lbs right after chemo. Probably because I dont have a desire to eat and when I do, the diareah kicks in for about 3 days,... Its not unbearable.. it just sucks.... I am a busy active person, and this lays me out of commission for a few days... 3 more rounds to go...well... 2 after Tuesday and I cant wait to be done. From reading everyones posts, it sounds like we all have very similar side effects.... Good Luck to everyone...
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Toni,it is good you are not throwing up like I did. that was the worse part and the diarrhea. I was so glad to get the hard chemo over with but I had a bad time with radiation too plus lost my brother to cancer just as I was starting radiation. I know this is not fun and I hated losing my hair too but it could be worse. I did not wear wigs I just wore scarves. the worse part is I really looked sick. I looked like I was dying and I was so pale but now I have hair and am darker again like my normal color. I know how bad you want this to be over and it will. then you will look back and say it did not seem so long but it did at the time. the year of Herceptin is not bad. I worked while taking it and doing radiation. I lost a lot of weight but I am trying to keep it off. I need to eat healthy but not gain weight. Not easy! Are you taking "The Red Devil " Med? It is put into your IV and it is dark red. It is for those who have ER+/PR+ I think. I never got that because I was only HER2+ stage IIb grade 3 4/22 nodes positive.
Keep in touch! It is good to talk to others with this problem.
Carolyn
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Dear All--
I started TCH in late January, 2009, followed by radiation. Completed my year of Herceptin last January and am on Arimidex. I am checking back in just to tell folks that this group was my lifeline and savior during chemo. I am forever grateful and feel like the group pulled me along and through the process, even though I was a relatively quiet member. Please know how important this group is.
When I was in the midst of chemo, I could not have imagined that I would ever feel good again. I have plenty of hair and plenty of energy and few aches and pains. Folks on the site kept saying that chemo is "DOABLE". Not a glamorous description, but it sums it up. You can and will do it. Rely on your buddies here to help you through and to tell you all the tricks to make it easier.
We are all lucky to get Herceptin. I am now starting to do advocacy work to help make sure that research will continue in the fight to treat women better and to eradicate this disease.
Hydrate!!! Water, water, and then more water.
M.E.
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Sailor35, so good to hear from you and to know you are doing good. So many do not post once they are finished and would rather forget the ordeal they went through. I am glad you will be working to help women to deal with this and to get more research. a young friend I had known all her life died when she was early 30's. she did not have Herceptin then and I do believe she would have had a better chance if she had. besides she did not think she would have breast cancer so young but her family had cancer on both her mother and father's side. If nothing else we must tell them to do their breast exams and to get the tests they need. I know I had lumps most of my adult life after my first child but they were benign. I had one that was not. Hopefully we can get the word out about all cancers, but since we went through breast cancer we can tell people about this. good Luck to you and your work!
Carolyn
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Hi all,
I just found this group and thank god I did...
I finished TCH chemo on June 30th, continuing with the herceptin for a year and starting rads today, I really thought I would have seen some hair growth by now...but so far..just a little on my legs. I am getting discouraged.
How soon after chemo should I expect to see some growth? I know the herceptin slows it, but I'd love to her from people when their hair started coming back, I am too tired and too HOT to keep wearing the wig...sniff
Mo
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Welcome, ladym13! I'm not sure about hair growth, but I would expect you will see something within the next month. It's too bad it came back on you legs first. What's up with that?!
I am going to radiology today for a sono. I went to the ER Friday night to be scanned for blood clots because my port-side arm is swollen. They didn't find anything, and I'm still swollen, so I have to go back for a sono with dye. I hope it's not a clot. I have surgery scheduled for a month from yesterday.
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Hi Ladies - Just recently found this site and really, really wish I had known of it last January when I first started TCH. Had BC.org bookmarked but never did get back to explore. After being diagnosed I was so overwhelmed, as I'm sure we all are, that I had trouble keeping up as life does go on even though we are in the depth of our own private hells. Anyway, found it now and am doing what I can to pass on the site and to share my experiences.
ladym13 - I am keeping track on a calendar what my hair is doing as I am finding that interesting. Mine is now between 1 1/4" to 1 3/8", curly beyond belief, shockingly white, & coming in very slow. Last TCH was 3/23/10 & first stubble could be felt on 5/1 = 5 1/2 weeks BUT progressing very slowly as has taken 15 weeks to get to 1 1/4".
Bon - You were discussing the rash a few weeks ago but didn't see if you resolved this problem. I definitely sympathize with you on having a Doctor LISTEN to what you are saying. I changed Oncologists after 2 treatments as she not only did not listen to me, she lied to me. I had existing digestion problems which I told her about and asked specifically if chemo would be a problem. Her reply was 'not at all' - so not only did she not listen, she did not warn me that it could cause constipation and to watch for it. As a result I ended up impacted, in severe pain & in the emergency room. All of her literature said that if there was a problem to call a certain number and I would receive a call back within no more than 40 minutes. After 1 1/2 hours my husband rushed me to the ER - he received a call from her about 3 hours later!!! That was a horrible experience and one that could easily have been avoided. That set the pattern and after the 3rd TCH I again ended up in the ER with a temp of 102 and that turned out to be an infection in the colon which no doubt would never have happened if I hadn't had the first incident. Ladies... make your doctors listen to you or find another one. Bon, let us know how you are doing.
I am now progressing with my Herceptin and since I was ER-/PR- I don't have to take medication to block estrogen production and since I had BMX I don't have to do Rads. When you are going through Chemo, it seems it will never end - but it does
and you will look back and be thankful you are past that stage.0 -
ladym13 - welcome to our group but so sorry you had to be here. as for the hair, mine started to grow back this soft baby bird type hair about my 4th chemo. i totally shaved my head down with a razor and it is growing really well now. i have been taking prenatal vitamins, and using the Nioxin shampoo system. It is special shampoo, conditoin, scalp treatment and I was also using their follicle booster. I used 2 bottles of follicle booster and stopped using that. I have had my hair colored 2x and cut 3x (just the straggly ends and clean up the edges). I finished chemo on 4/7 so it has been just a little over 4 months. I will finish Herceptin in December.
My hair prior to chemo was to the middle of my back and the best hair I had in years from being pregnant! It seems to be coming in pretty good now the front is still a little thinner than the rest but i do a little spiky hair do now!
Good luck to those starting or still doing chemo. like everyone says it is doable just not the best experience!
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Allison, did you find a natural hair color? I'd like to start coloring but I'm not sure where to find one without all the chemicals.
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LilyLou...The rash cleared up after 5 or 6 days on Prednisone. But then I was faced with double steroids when it was time for the next chemo round. I had to phone MO and ask about discontinuing Prednisone to start pre-tx Decadron...or not? You would think the doc would have addressed it when he wrote the Rx. Am so discussed with MO that it's hard for me to think of having to deal with him for another couple of years. He may be great at figuring out the right chemo regimen to follow but his health care delivery stinks!
This last tx 'inspired' indigestion/GERD of mammoth proportions. I've suffered for days and MO had no suggestions except to get GI consult. You'd think I was the first patient who ever complained of this SE. But no rash this time.
Just fed up with it all. In the words of my patron saint Rosanne Rosannadanna..."it's always something".
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Ladies, You've got to laugh! Life has thrown us a curve ball but if I get one good belly laugh a day, I'm in much better spirits.
To that end, here's a link to an old video of my patron saint, Rosanne Rosannadanna, the Weekend Update Medical Correspondent 'don't you know', giving her take on smoking. Listen to the description of how the guy feels. Sounds like us and our complaints here on this board.
Hope it makes you laugh and remember that "It's always something".
Sorry, You'll have to cut and paste. I can't seem to get it to function as a direct link. But it's worth the effort, honest.
http://www.hulu.com/watch/4147/saturday-night-live-roseanne-rosannadanna-on-smoking
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That was great, thanks!
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Ladies, You've got to laugh! Life has thrown us a curve ball but if I get one good belly laugh a day, I'm in much better spirits.
To that end, here's a link to an old video of my patron saint, Rosanne Rosannadanna, the Weekend Update Medical Correspondent 'don't you know', giving her take on smoking. Listen to the description of how the guy feels. Sounds like us and our complaints here on this board.
Hope it makes you laugh and remember that "It's always something".
Sorry, You'll have to cut and paste. I can't seem to get it to function as a direct link. But it's worth the effort, honest.
http://www.hulu.com/watch/4147/saturday-night-live-roseanne-rosannadanna-on-smoking
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Bon, do I ever know that fed up feeling!! Now that I am finished with TC, I look back and there is an awful lot that I've dealt with - we all have. First I had the shock, then I had to drop everything to educate myself so I could at least have some idea of what was happening to me and hopefully help me make educated decisions. As we all do, I came face to face with my own very real mortality. I had to surrender my health for the time being so poison could kill out the hated intruder. Yes, we deal with a LOT so it is OK to be fed up at times, even healing. For those of you still receiving treatment, it will soon be complete and you have literally fought a battle for your life. This small span of time will seem a very short time. Every day that passes, I am stronger. I can feel it and I can see it. I started working out again yesterday and today I was reflecting on just why that made me feel so good not only physically but mentally and you know what it is? It's being in control of your life again. Ladies, that day is coming for you again too, and will be here before you know it and you will be all the stronger for having fought this fight.
Enough of that - now I'm going to Bon's link and have a good laugh. Thank you Bon for posting it.
Louise
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lady_madonna - My cancer center has an Image Recovery Center. She is a licensed cosmotologist. She has been with me from the start. Shaved my head, did my wig, did the hair trims and colors. I know she does not use anything that is permanent but that is all I know....sorry. You could try a Whole Foods??
She only charges $25 so I cant beat that price. I use to pay $100 for a color and cut.
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LOL... that's one benefit, right?! Imagine all the money we've saved on grooming!
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Welcome, LiliLou! I'm glad you found this group. It has been so helpful to me.
Well, I have a clot next to my port. It's not in the port or the cath, but next to the port near my shoulder. I will start shots tomorrow. I could have started today, but the pharmacy didn't have the generic. The name brand is $900 a shot, but the generic will be $15. Both the radiologist and the GP said it was okay to wait a day, so that's what I'm doing. Hopefully my man-arm will resolve itself quickly after I start the shots.
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Dawn- What do the shots do? that is quite a price difference between the name brand and the generic. Do you do the shot yourself or do they do it for you? I'm glad the clot was discovered.
I had a bulging vein in my neck (on the other side from the port) and they did an ultrasound to be sure it wasn't a clot - which it wasn't - it was just a bulging vein which eventually went away. I had wondered what they would do if it had been a clot. I hope this resolves for you quickly.
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mtndawn,I do hope you get over this blood clot fast. If it is not one thing it is another.I take Procrit for low red blood count. That is one of the side effects of that.
I am 2 yrs Post TC (well almost, in Nov.) My hair is growing good now but thin. Seems like everyones hair is the main thing they are concerned about. I know that was mine but I guess that is to keep from worrying about other things you can't see. anyway it will grow the way your body decides to and where it decides to! My legs get more hair than they ever did before but I still don't have hair under my arms and did not for years. I am old though(63) and that seems to be one of the benefits of growing old. My legs had quit growing much hair too but that is back but it is baby fine. My hair on my head is too and my eyebrows are very light and crazy acting. I look like Andy Rooney on 60 minutes except you can't see them that well. Why are they sticking out? Anyway I used to wish my eyebrows were not so thick and dark. Be careful what you wish for!
I know this is hard to go through but so many here will say after it is over you look back and think that was not so long. I guess it is like the pain from giving birth, it is soon forgotten. I do feel like my onc is wanting to brush me off now that everything is over and I failed his trial drug. He is very busy and he is getting tired of my problems I think. I mean because my blood won't come back up. I really do eat well (healthy I mean) I am not hungry most of the time. My husband worries but my stomach did not get much for a couple of years and now I just don't eat like I used to. I get enough to maintain my weight though so that should be good. My onc told me not to gain weight and I have gained 5 lbs but I am trying to keep it down. I love fruit and it is so fattening because of the sugar in it. he will not let me take vitamins, just to get it from good healthy food he said.
I wish everyone the best and I am so thankful for all the ladies that come back and encourage those who are dealing with this thing. Too bad more cancer centers don't help the patients more with the mental side of cancer. The American Cancer Society helps a lot if you give them a call or go on line to find what they can do. they help with money for transportation and other things.
Carolyn
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Amy, the shots are to thin my blood, to allow the clot to dissolve. My insurance doesn't cover name brands, so that's part of the reason for the price difference. I guess if all the shots were given in an office setting, it would only cost me the office visit copay. If so, and if only the name brand were available, I guess I'd go to the clinic for all the shots. As it is, I will take the medicine over to the clinic, and they will show me how to do it. I'll have to do my own after that. I've given myself shots in the past, though, so I should be able to do this. My symptom of the clot is a swollen arm.
Thanks for the info, Carolyn, it's good to know what people are going through. I am not getting anxious about my hair coming back yet. I actually enjoy my scarves.
I hope your counts start to come up soon. Protein is supposed to help, I think. I know I don't eat meat, though, so mine may be stubborn as well.
I have been so lucky with my quality of care. Everyone at every single office I go to has been wonderful, so compassionate and caring, never rushed or condescending. I love our community's health care people. I'm lucky to be in a small town area.
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Hi: I'm popping in from the Jan. chemo group. I started Herceptin with Taxotere (4 rounds), ending March 31. Am continuing with Herceptin.
Have had echos every 3 mos, had one last Friday. Today, they wouldn't do Herceptin because they said I was "borderline"(?) Have scheduled another echo for next week, then Herceptin again in 3 wks.
Has anybody "taken a break" from Herceptin before?
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bump
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Thanks Carolyn. In 07, when I had Stage 0 DCIS, I did not have to do chemo. I did do the Mammosite targeted radiation,, which was great: just 2 sessions a day for 7 days. Insertion of the catheter wasn't fun but it beats the 5X-week 6 week regimen I'll have this time.
Just had Infusion #1 yesterday. I actually feel fine, but I know the side effects start up later. I have been drinking a ton of water, and have reconciled myself to total hair loss as this thing goes on.
Chemo is the great unknown for me: the only treatment I haven't had, and the one I dread the most.
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I thought I'd weigh in about the hair. I finished chemo July 15, 2009. I finished Herceptin in March 2010. When my hair first grew back I used to spike it with gel. Now, one year later, it is about 4 inches long (I have only had one 1/2 inch trim), and is super curly. I look like I have an afro. I never had curly hair before. It is fun because I can just wash and wear (the curl pops back in within about one hour of it drying). I am hoping that the curl will continue as it grows more. My hair is, if anything, thicker than it was before. I think that Herceptin did cause slow growth, but now that I am done with it I think the hair is growing faster. You too will get your hair back and maybe you will get a surprise variation like I did! Some women discover that they like a short hairdo, but never tried one before.
My only health issue one year down the road is that the drug Arimidex (prescribed for postmenopausal women for 5 years after Herceptin is finished) has caused some bone/joint pain.
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1marmalade1: You had 4 rounds of taxotere but was it also with carboplatin or with cytoxan as well? Wondering why my onc kept telling me that it usually is always with 6 cycles.
thanks
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1marmalade1 - Your echo was borderline of what? I have my 3rd one Monday and my 11th Herceptin on Wednesday.
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I didn't get that much info re the echocardiogram, it was the nurse that passed on the info. Your results are based on how the heart pumps, and whether the heart can pump well enough for the H to pass through your entire body. The results are based on a scale of 1 to 100, and upwards of 50 is good to go for H. However, my results were around the 50 mark, so they decided to give me a break from H until my next scheduled app't in 3 wks. Probably the onc could have explained it better, but no one was available at the time.
Emster: I had 2 rounds of AC, followed by 4 Taxotere with Herceptin.
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I found out when I was taking Herceptin that some places do the heart tests different. I had good results and did not have very many like some people do. I was told it was supposed to be done before chemo & Herceptin and then every 3 months but I did not have it done until six months after the beginning, I do not know if it was an over site or what. Mine was good, in fact very good. My onc had me to go to a cardiologists though because when my blood count goes down my heart races and feels weird. The cardiologist explained how things are supposed to look etc and my only problem was 2 valves that were not as tight as they like to see but still not a bad problem. She also told me that some people read these things different and it depends on how they do it. When I was going to do the trial drug I had to have another one and so I went to the ones the trial place wanted me to have it and the young man doing it showed me what they see and how he would do the math to figure the results and he said a lot of places use a computer program that he felt was not so accurate. Of course I could not have read the results but I could definitely see the difference in the way he read it and the computer read it. Mine was great before the trial drug. I took 5 days of med and was so sick with it, so I quit the study after a couple of weeks and so I had to go back for the test again to see what my heart was doing for the end of study report. Mine had dropped a lot. the young man told me he would go over it with me but he was on a tight schedule and he told me to ask the study doc. he did say it really went down a lot in that short of time. My onc would not tell me the difference because he did not have time either. I figured if it got worse I would know it and my heart beat did feel like it was skipping beats but now I am feeling better with that. I think for the most part they are just being cautious but if any of you feel like you need to go to a cardiologist or ask the onc if you should with a low result. The cardiologist are a lot better able to give you good explanation. My infraction rate did drop a little with the Herceptin but it came back good after I finished. The study drug was not so good. I am glad I could not take it now. At least they did get some information from my tumor and the short time I took it. I wish I could help more but I could not go a year being that sick for sure.
I think what we fear the most is what we don't know. Once we get started with the chemo and we get used to the side effects we feel better knowing what will happen. I hope everyone taking this will do well and get past it soon.
Carolyn
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I go for my 3rd Echo Monday. I do seem to have some odd heart rhythms going on at times but perhaps it is just anxiety or maybe just continuing SE for the TCH.
There is definitely a difference in the testing. My first one was $1500 and the second one was over $11,000 !!!??? Same hospital but different doctors as changed my Onc after first 2 treatments.
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