Taxotere, Carboplatin and Herceptin
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Swampy and all of you this is why YOU DONT want the government to go to social medicine which they want if you are for it you bettter think twice they already tried to change the fact they wont pay for mamograms in earlier years its awful and I am so sorry for you swampy I know it takes allot of energy but keep fighting this until its resovled. The government shouldnt say who and who cannot get what they need.
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Swampy, I have had some problems with my insurance but not over the chemo. for some strange reason they got me and my husband mixed up on how much payment had been satisfied because we used the same cardiologist. then they would not pay mine in full like they should have. This was back in April and I have been working on it since June because that is when I found out it was not being paid. Anyway nothing like your problem but you should have some recourse. Talk to your onc, surgeon whoever you need to to get a letter sent to the Insurance and fight. I think they do this to sick people because they know we don't have the energy to fight. Heck I would write a letter to the President. I know they say he reads some of them. anyway you should have some kind of appeal process. I am just now learning about Medicare since my husband is on it. the past 2 years we have had a lot of medical problems but before that we were not that sick. We did not need the insurance so much.
As for mammograms at an early age, I had them from age 28 because of lumps that was fibrocystic breast but they could not really see that much since I had dense breasts and it was in the 70s. the tests are better now. I found my own lump that was >5cm and the mammogram did not find it when it was smaller. Was it there or did it grow that fast? I ask the surgeon while he was looking at my last 2 mammograms and ultrasound's. I had both the last 2 years because of lumps. It was not there he said. Okay I do not know what is best as far a a time frame for mammograms. I do think self exam is a must and who is going to tell me not to check myself. also with men they must check themselves for testicular cancer. there is no test for that like a mammogram. I like the new thing they are talking about with what the military does with infra red rays. I am not sure I understand that but if I do not get mashed anymore and it works I am all for that.
Hope everyone can enjoy Thanksgiving. Last year was rough for us but I hope better this year but I have a urinary tract infection again.
Weety911, I think you are going to be okay with this protocol. Hopefully they would not have done that if it was not okay. I had TCH week 1. H week 2 & 3 then TCH the next week and over again so you are getting as much as any of us did just not so much T at one time. The Carboplatin is what I had the worse time with and I sure wish they had given it 1/2 at a time or not at all but I know they had to. I hope it is all okay for you and try to relax and trust your doc like you did in the beginning. this is just another phase we all go through I think after the most of it is over. We get afraid it will come back. It may come back even if they do it all at once but you cannot worry about it just stay on top of things when you think something is wrong.Relax!
Carolyn
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Hi Lisa -- have you started the Neratinib clinical trial? If so, have you had diarrhea? I just received the information and am considering the pros and cons. If you don't mind telling me, what helped you to make the decision to go for it? Best to you, Bethany0
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Hi Lisa -- have you started the Neratinib clinical trial? If so, have you had diarrhea? I just received the information and am considering the pros and cons. If you don't mind telling me, what helped you to make the decision to go for it? Best to you, Bethany0
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Bethany, I do not start taking the neratinib (or placebo) until Dec. 2 I am out of town for TG and I did not want anything to disrupt my travel. I have been reading the thread on this sight regarding the neratinib trial and I am concerned about the diarrhea concerning my life long digestive issues. But, I willl try.
A Happy, Happy Thanksgiving to all of my Sisters!! To Gramma, Cupcake, Bold, and Bluedasher; you guys have become an extention of my family in the past year and I could not love you more, Thanks so much for always being there. And a great thanks to all the the other TCH sisters. Swampy, CCBaby Ipohgrl, Weety, Engtch, Bethany, Ellen, gosh, I can't think of all of you, but thanks. We are, and will, beat this crap!!!
Happy Thanksgiving! Peace Hope and Love to all my Sisters!!!!! May God Bless you all with his Grace! I love you guys!
Lisa
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Ladies I have been about a year behind all of you but have been reading every email you have entered I am one of them that the hair has not come back I feel wonderful as far as energy wise but emotionally its been hard. Today I had my sons and my ex over who I was married to for most my life and he has a great relationship with my grown sons and I am at a much better place then he is I dont need things to make me happy cancer has given me happiness with just simple things. I realize if I was to stay married to this man I would of never gotten this far with my recovery so for that I am glad and I think God has given me a gift in my weak days of lonelness of a hair less lady to think maybe he has changed god has opened my eyes again to your better off so by being kind and having him eat with my sons and I there was a reward of your so much better off Ms Maura hair or no hair and every night (I can stay awake) I would like you to know I have my prayers to god for all of you ladies and the ladies who are dealing with a second cancer and for the ones as I am dealing with hair loss. I just wanted to share this with you I am thankful for god opening my eyes and for all you ladies kind words and thoughts it gets us through it every day and Thank you we are a family of its own..
Maura
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Ladies I have been about a year behind all of you but have been reading every email you have entered I am one of them that the hair has not come back I feel wonderful as far as energy wise but emotionally its been hard. Today I had my sons and my ex over who I was married to for most my life and he has a great relationship with my grown sons and I am at a much better place then he is I dont need things to make me happy cancer has given me happiness with just simple things. I realize if I was to stay married to this man I would of never gotten this far with my recovery so for that I am glad and I think God has given me a gift in my weak days of lonelness of a hair less lady to think maybe he has changed god has opened my eyes again to your better off so by being kind and having him eat with my sons and I there was a reward of your so much better off Ms Maura hair or no hair and every night (I can stay awake) I would like you to know I have my prayers to god for all of you ladies and the ladies who are dealing with a second cancer and for the ones as I am dealing with hair loss. I just wanted to share this with you I am thankful for god opening my eyes and for all you ladies kind words and thoughts it gets us through it every day and Thank you we are a family of its own..
Maura
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My sistahs!!!!!!!!!!!! I just wanted to say how grateful I am your all of you. Lisa really said it well. I could not have done this with without you. Well maybe I could but it would of been a lot more frighting. You all Rock. Speaking of Rockstar I always loved her posts too. So many exeptional woman..... Thank you all..................................................................
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Happy Thanksgiving sisters! Have a safe and happy holiday!
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I started TCH on 11/19 and am still feeling horrible. I am really discouraged, since my dr. had told me I "might have a couple of bad days", but that's all he anticipated. I'm usually really strong and don't let things get me down, but I have felt lousy since last Sunday. I can't stop the nausea unless I take phenegran, then, all I want to do is sleep. I've had diarrea for an entire week, but I'm afraid to take the Immodium, for fear of being constipated. My bones hurt, especially in my hips, knees and elbows. My tongue feels like it's been scorched and I have a terrible taste in my mouth. My bottom end is so sore from going to the bathroom so much, I can barely sit down. Please, if you have any suggestions to relieve any of these side effects, please share them with me. I want to be able to enjoy my family, especially now, during the holidays. I don't like who the chemo treatment is turning me into. Thank you for any help you can send my way.
Lisa
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Iammom2four, so sorry to hear you are having a rough time! My digestive side effects usually lasted 10-12 days and I lived for a relatively "normal" week 3. Make sure you are drinking plenty of water in order to flush the chemicals out of your system as soon as possible. Do not let yourself get dehydrated! Suck on popsicles, eat jello and sherberts to help keep you hydrated.
Take the Immodium and a good probiotic. Start the probiotic the day before your tx. This will help replace the good bacteria in your digestive system that the chemo kills.
The bad taste in your mouth is probably going to be around for your enitre course of treatment. For me (along with all foods tasting bad) was the worst SE of them all. It was as much psychological as anything and very frustrating. Ask your oncologist for a prescription for "Magic Mouthwash" if you have mouth sores.
Hang in there and know that we are here to help and encourage you.
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Iammom....Swampy has given you some great advice. Although everyone's side effects are different, yours are pretty much normal with the rest of us that have taken TCH. I thought when I first started that I would only feel bad for a couple of days too, but that is not true. My SE's would last a good 10 days before I felt better. I was never nauseated though. My onc had me on Emend, which I think helped a lot. Ask your onc about it. As Swampy said, drink a lot of water, it helps so much.0
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iammom; I am so sorry to hear you are having a hard time. Swampy and CCbaby are right, take the immodium - if that makes you constipated then just take a laxitive the next day. You have to do whatever it takes to feel better. My doc too said "you should be fine" well he was wrong, that first one knocked on my backside. Then I got used to them and knew what to do and what not to do. Everyone is different, but this is a great place to come for guidelines. Just remember we are here for you. Don't be afraid to ask anything, we have heard (and said) it all!
Lisa
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iammom,I know it is discouraging right now, but you will learn to handle it. It is not fun for sure but the information you got from the others is right on. Drink that water, I don't care what it tastes like. I got dehydrated 2 times from vomiting and diarrhea. You must drink liquids (decafe) and take the Immodium. It was a lifesaver for me. he had me take 2 over the counter to start with and if you drink your liquids I don't think you will get constipated but if you do take Miralax. It is great. The main thing is you don't want to be constipated before a treatment and then the other hit. I almost died the one time I was like that. what I did from then on was take the Miralax a few days before the TCH and then 3 days later the other hit me. I always felt okay for 2 days and I would start feeling sick and get sicker for 10 to 12 days. Take you meds for nausea. I forgot to do that at first and my husband helped me remember what to take. You will get the hang of it. I am not saying this is going to be an easy ride but you will get through this and be well again. I am a year past TCH and 5 months past herceptin. You can do this! We are here for any question or just to listen to your rants. We have done our share I can tell you. I still rant some. Please drink your liquids whatever you can get down. I did find a cherry slush was good a few times but it changes what you fell like drinking. Do not eat your favorite foods because they won't be after this. You are not a cancer victim. You are a cancer Warrior! I know there are some times you will not feel like even turning on your computer but you will find us here waiting to help.
Carolyn
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Lisa~ iammom2four PLEASE, PLEASE, PLEASE ask or demand emmend. I was going to refuse treatment 4 & 5 because I felt soooo bad but after this drug I honestly felt human after my last 2 treatments. Another thing is come here with you problems and we can try and help you with suggestions for your side effects. Hang in there sweetie you can do this..... BTW, I had a couple good days inbetween but they where not until after 2 weeks.
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Hi all,
Did anyone else on TCH have their tumor markers tested during chemo? I just had mine done and I'm freaking out because it is above the normal range!!! I started chemo at 27 and now it came back at 47.5! I've been researching this and came across a couple of other ladies on this site that had it happen to them during chemo and then a few months later it went back down into the normal range, but needless to say, I am crazy with anxiety!!!
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Weety911, I had mine done with the CA 15-3 but it was a while after I finish TC and was on my last H and it came back at the top of the normal range. My onc never said a word about it. I did some research and most places I looked said they are not exact and most times cause more anxiety than it is worth. It can be a false reading and so even if it is high where do they look? I am having mammograms and the other normal tests to check for spread of cancer but so far no cancer found. Look on the Internet for the kinds of tests they did on you and see what it says. If your onc did not think it was a big deal I would not worry. I am not even sure why they would do it during your chemo anyway. Seems like that is something they would do after the chemo is finished to follow up. Try not to worry too much and discuss this with the onc.
Carolyn
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iammom, others gave you good advice. For the sore rear, it helps to have wet wipes. You can get flushable ones in the toilet paper aisle. That way you can clean your rear more gently after using the toilet.Some use a squirt bottle of water to help with clean-up. When I was on a trip in Italy, the bathroom in my hotel room and even some of the public bathrooms had hose with a spray head next to the toilet - kind of a poor man's substitute for having a separate bidet - that would have been nice during chemo.
Also try a good diaper rash ointment like Balmex to provide a protective barrier for the raw skin.
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I hope everyone has had a nice holiday weekend. Hubby and I are traveling today to go look at a new horse for him. I hope it turns out to be what we are looking for.
Have a great day everyone.
Lisa
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Lisa, come to Oklahoma. We have lots of horses. You can stay with me. I would hate to think about that long trip for you though. I hope you find a nice one. I saw a trailer going down the road the other day and it had 2 horses. One was average size and the other was really tall. I wondered how big it really was or maybe the trailer was not made right but his whole rump was hanging out. I told my hubby not to get up behind it just in case it needed to relieve it's self. the whole tail was flying in the breeze. It did not look safe for the horse to me!
Carolyn
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Happy Belated Thanksgiving - we were all in my thoughts this past week.
Lisa-iammom I, like the others, are so sorry that you have had such a rough go. Hang in there and follow the advice of the others. Please look into Emmend. I took Emmend throughout my chemo and my nausea very mild to not at all. Please be sure that you have help around the house and with the children.
Swampy - Please fight like a junk-yard dog for your Herceptin! Our treatment protocol is established. Your oncologist will be your strongest advocate. I shall pray that your concerns are heard by a compassionate person who will straighten this out for you.
Question: The radiologist who read my annual mammogram has called me back because he has noted something in my breast, but it is not around the incision or surgical site; it is on the opposite side of my breast. The technician used the term "calcification". I made sure that my August diagnostic mammogram and PET scan (both of these came back negative) would be at the office for my visit.
I don't feel nervous or frightened; I just want to be well prepared for Friday's mammogram/ultrasound. I'll start with looking up "calcification" but I wanted some input for you ladies as well. Are there any special terms or tests that I should be aware of?
Thanks for your help.
Cheers!
Cloud
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Oops! A stuttering post!
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gramma - You made me chuckle! Horses do like to releive themsleves when traveling! We may end up in OK or Missouri before this hunt is over. The one we looked at on Sunday was not even close to what was advertised.
Cloud I have heard of calcifications but I have no idea what is done about them. Please let us know what the docs say.
Today I go in for one more round of bloodwork and then tomorrow I start the neratinib study. Fingers crossed!
Have a great day everyone.
Lisa
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Cloud: 7 years ago in February I had a needle core biopsy done because they found small calcification's in my left breast on a mammogram. At that time they put a chip in my breast to mark the area so they could continue to watch that spot in further mammograms in the future. They told me at the time it was nothing that would require any further action but an area to watch. Now 6 1/2 years later I end up with IDC in the left breast and the marker they put in my breast was in the exact area that the tumor was now found. My surgeon told me it was very likely that the calcification's were the start of a precancerous condition that developed into the bc I was diagnosed with in May. This was just my personal experience and most calcification's are benign and are due to a variety different causes. Try not to worry but get ask the questions you need to until you feel you understand your situation.
iammom: Hang in there, like all have said drink lots of water! My worst period lasted about a week and then slowly I started to feel better. You will get through this! Hope you will be feeling better each day.
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I have a large lump in the breast I had the lump and nodes removed. they say it a fatty mass. I don't like it being there and I wish they would just do a needle biopsy. I am due a mammogram now just on the one side. I know it is still there because it is big and it also turned a dark brown during radiation. I had know of people having calcification's too and it nothing to worry about they say. My lump was in the exact same place I had a lump years ago but then it disappeared when I had a hysterectomy. I asked them about it being the same lump but everyone assures me it was not since I had had several mamos since then. The only advise I can give is read everything you can, talk to your doc and pray. I hate cancer. It is killing a friend of mine in Australia but hers was in the throat and lungs not breast. My brother had tongue cancer and then in his lymph nodes in his neck.he took 1 chemo and it killed him but he was so weak from the radiation to his mouth and not eating. I am lucky it was in my breast I am sure but I still hate cancer. Everyone stay strong and on guard.
Lisa, come on and we will love to have you. I am glad I gave you a chuckle.
Carolyn
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My last chemo was the worst I guess the build up of it and my dentist was so kind that he said that one will be the worst when he was cleaning my teeth he went on so much I cried all the way home no chair side manner.I wrote him a long letter and he is no longer my dentist. Now I cant get answers about my hair. Never stop asking I dont get a lot of feed back from this thread as I am done with chemo but I can help with my expierance.
Maura
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Lisa can you please explain to me what the trial you are on I would like to discuss this with my onc in Feb. I hope I am not being a pest but I am not sure about it at all and was interested anything to keep me going I have not had grandbabies yet to meet....I am young 58 and have and want to live allot ..
Maura
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Cloud you are doing all the right things I would think to be safe they will do a needle biobsy of course I had a Pet Scan before my surgery to see if there was a problem anywhere else also and it might be nothing at all maybe even scare tissue and he thinks it calcuim classification. I think you are doing all the right things what about your tumor markers are they testing them at all? Good luck on Fridy and you are in my prayers as all the ladies are here.
Maura
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Enjoylife,I know it is hard not knowing why your hair will not grow. I wish I had an answer for you. Mine is slow growing and so many that had chemo as much as a year after I did has hair growing like crazy. I at least have hair all over my head but it is very short. I can live with it. I have a friend who was bald on top for years and it was not from chemo. I saw her one day at a museum we took our grandson to and I was not sure it was her. She had a lot more hair than I ever saw her with. It was hers because it was still thin but not bad. I am sure she must have gotten some kind of help but I have not asked her. Have you thought about the hair transplants that men get when they are balding? I hope you can find some kind of help and I would share what I have with you if I could. I do know the trial that Lisa is in is a 50/50 chance you would get the real med or a placebo but at least you would get the screening tests to see how you are doing. Might be worth a check and see.
Carolyn
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Carolyn thanks for your words. I am not sure what the study is about that is what I was askihg its not chemo is it to help that the cancer doesnt come back again and is there hair loose again? I know that sounds dumb but if I ever get it back I hate to take a chance of loosing it huh..What did you mean by the real med or a placebo not sure what that is about? Well I am going to another derm. in Jan when the new year comes in I have a 40th class reunion in summer and I am to get my breast reconstruction finished in my home town Boston so if I have hair who knows maybe my prince charming will come into my life like a love story ha..I was married 32 years and divorced last 6 and I am just at the point where I would like to share some of my life with someone wonderful if there is such a person ...
Maura
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