Taxotere, Carboplatin and Herceptin
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Sanasia, I am so sorry that you tx have not been very enlightening. At the beginning of the Chemo post is some tips for getting through it. They stay at the top all the time. You might read through some of it and get more insight. I never had post IVs either but I had pre chemo class and given a book they said would be my chemo bible and it was. I read it all the time when I had a question and also it had this web site plus others but this one seemed to fit me better. My chemo lab everyone is out together with only a curtain to pull around if they need to. A couple of times I had a rough time of it and they pull the curtain to keep others form seeing some disturbing things like vomit. I know of one man they had to take to ICU once but he is doing great now. Mine also had snacks, Ice & water machine which was wonderful. Coffee and different kinds of creamers and sodas. They do give this to the patient but ask visitors to pay a donation for anything they get. We started just pitching in some money so they can keep this up and I have gone in and got some creamer for coffee when I was not having chemo but radiation. I loved every Nurse there but some was a little more harsh than others but those are not there now. the person who draws blood is great too. I have to have my arm stuck since they don't use the port but some places use the port for blood tests. they had two private rooms for some that need more privacy but I was never in there but I do know one of them has a TV. We took my laptop and played movies when it was the long tx every 3 weeks but the Herceptin I had alone 2 weeks between and also when I had TC so that was a long day. I never really took lunch but the hospital had a cafeteria which my hubby could get food but we took some snacks instead of eating food that made a smell. I got to where I could not stand the smell of food. We thought maybe some others might be the same way. I did see people bring ensure or boost or other liquid meals and some brought sandwiches but I just could not eat. Probably why I lost so much weight. anyway you can be prepared now for next time. Do you have premeds you take like Benadryl and Tylenol? they always gave me those because I get reactions to everything. some don't take them when they take Herceptin only. I see where you are ER+/PR+ Her2+ so you probably get the dark red med some of my friends call " the Red Devil" I did not get that. I took Taxotere, Carboplatin, & Herceptin. You should be getting a paper about all of these to sign when you start and a copy to take home that tells you about the side effects. If you did not sign one you should have. Insist on seeing them. Not that it is much different wording for each thing by by law you should have signed them and gotten a copy. I like to get a copy of my blood results some times so I can see where I have gone up or down. Some places inundate you with too much paperwork to keep up with but the "American Cancer Society" recommends you keep your records in case years later you get cancer again they have some records to see what you had.
CCbaby,You are a great adviser and cheerleader. I am so glad they have you here.I hope you continue to come and help the ladies even after a while. It was my lifeline and I learned so much. I am glad you are doing good.
Cloud,You are great too. Please keep cheering everyone on. My onc will not let me take vit yet. I am post any tx since July but still having red blood cell problems. Just eat well he says. I was not allowed to eat any raw fish and no raw fruit or veg which could not be peeled. May have been my onc but another woman I go to church with had a different onc and he said the same. Also no alcohol since the chemo poison is hard on the liver. I am not a drinker anyway. the chemo class did say multi vit and calcium but nothing else. I didn't take anything because I wanted this chemo to do it's job of killing the cancer.
It seems that with some who have had chemo first and then surgery it really got the cancer. I had surgery first but a lumpectomy and lymph nodes removed. I wish everyone the best. I hope no bad SE for anyone. If you do, take your meds. It is a lot easier if you know what to expect.
Carolyn
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Shelclaire I also had the eye twitching I had to go to he airport and I told my sister to look for the swollen eye twitching bald headed crying lady it looked like I was crying my eyes also teared I did use and it was ok through the doctor some genetic for claritin it helped allot with my nose running and eyes watering they said somewhere your nose runs because you loose nose hair heck I didn t know the hair in our nose stopped snort ha anyway we did get a chuckle out of it while it went on what else can you do and it does go away one day I stopped twitching and didnt remember it until I read it here again. Also I have been out of chemo over a year and my nails got better then started in again I use the tree oil it helps allot stinks but helps I might try the vit e now that its better ..This is the place to ask question some things there isnt a cure for just time but it helps to know your not alone and I don't want to go to the support groups so this is the best place for me I get too attached I cant even walk by a puppies in a box to give away..
Have a great weekend I liked them on chemo no commitments just rest
Maura
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Thanks so much Carolyn (Gramma23)! I remember when I first joined this thread, I asked alot of questions and got a lot of help from these fantastic ladies. So, I am very willing to pass it on.0
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Hey sistahs!!
I have not posted in this thread for a long time. I do read and follow each of our challenges and progress.
I decided not to do the Hormone blocking therapy at 2% E+ the benefits would be equivocal. I ask 3 oncs I got 1 yes and 2 no's.
I have a different experience than Lisa I have taste alterations from Herceptin that last about a week and a half. I hate it!!! Love the cure though.
I have lost 18 pounds since my peak from chemo. I have a long way to go and will be goal close by Christmas. Looking all hot in my short hair and skinny jeans and sweaters. I think that working out eating right are the best things that I can do to help with recurrence. I think of it as getting FIT!
It is nice to know that there is life on the other side of this journey. Most of us are early stage and have such great hope. We see more beauty and appreciate life more now then we ever did. Not to mention we now now we are strong and not to be messed with. My avatar was taken when I auditioned for a Conan movie (in the day). It now has a completely different meaning for me.
My thoughts and prayers everyday are for you all. We can do this, are doing this and have done this.!!!!!!
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Bold, I am sooooo jealous! I have to work my fanny off to just keep from gaining more weight! I am sure the Tamoxifen has a lot to do with it. If my pathology read like yours, I wouldn't take it either. But I about 98% positive, so I am stuck. I need to up my cardio, but I just stay so busy and by the end of the day I am whipped. But you have inspired me! 18 pounds wow! Are you on a specific diet, or just eating healthy and light?
Thanks, Lisa
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I would love to know how Bold lost her weight I am mowing with a push mower walking and going to the hosp. rehab for after cancer strength building I do the stepper and the treadmill and a bike and lift weights I am on Amedex and I have been off chemo a year and Herceptin since end of April. I eat allot of fruit and salad and some good foods too but not a big huge eater I eat more small meals than a huge one what can be up I have never been over weight I hate that part of it ....any suggestion my thyroid is good I do have lymphedema from the nodes being removed I only had 5 infected and they removed 29 because I told them to clean house I never dreamed it would cause the swelling problems and in this town your on your own no one knows how to fix the nails the hair to grow back or the swelling to control I don't salt anything but most foods can be salty to a point so good luck after chemo everyone with your body ha
Maura
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Hi girls,
EnJOYLIFE- I understand your arm issues. i had 16 nodes removed back on May5th during my bilateral masectomy DIEP flap surgery. I do stretches every day and i have so much pain and tighness and swelling in my arm. The swelling isnt THAT bad, but the soreness is so frustrating, i feel it all the way down to my hand. Is this possible scar tissue? I have no idea.
Girls, i have heard that tamoxofin in many cases only reduces your reocurrance risk by a small percentage. Is this true?
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Trish and Enjoylife - PLEASE get a referral to a lymphadema therapist!!! It is SO easy to control once you have a had a professional explain to you what to do. You need to invest in a compression garment. The therapist will tell you to wear it all the time. I don't, but when I see the slightest bit of swelling, I put in on and within just a feww hours the swelling is all gone.
Lisa
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Lisa thanks for the info i have gone to a theripist and it was good but it is expensive even with insurance it was 25.00 twice a week so she gave me a start then she told me about sleeve and I use it when I work out it helps and to watch my salt and self massage that I dont do enough its not that easy to do.. I also got a electric pump machine which helped alot this summer but I cant wait until I can wear long sleeve to hide the arm this winter I hate it when people say what happened to your arm ...Do you wrap at night Lisa I do but some nights it doesnt help maybe I am doing something wrong. I wish they had a easy sleeve to wear at night or a easy slip on wrap do you know of anything? This is what its all about reaching out and asking for help and suggestions...
Maura
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Oh my gosh, the eye-twiching thing----what's up with that? I can't get my eyelids to stop twitching! I thought I was the only one. I've only had 2 TCH treatments so far. Anyone know what causes this?
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One more thing I forgot to ask about--my doctor is already concerned about my WBC count (it was 3.3 when I went in yesterday for treatment #2.) She ordered my neupagen shots to start next week. I was pretty depressed about this because I was feeling so good and (almost) normal this last week. I was so sure that my blood counts were going to be good! What implication does this have being that I'm only at the beginning of my treatments? Did anyone else out there have to have WBC help this early on?
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Weety... Didn't you get Neupagen after your first tx? I was on Neulasta so I have no idea of the Neupagen routine. To give you an idea, my WBC was 11.2 at my first tx and was 11.4 at my last tx so my WBCs held up pretty well. I hope your counts don't present a problem down the road!
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Shelclaire... Yes a lot of us had the eye twitching. I am 9 weeks after last chemo. I think the eye twitching stopped about 5 or 6 weeks after or so, I still get it once in a while, but it used to be almost constant. It's kind of funny, you get used to it and then when it stops happening you almost don't notice it ,,,,,but one day you'll realize its not twitching today! wow.
and about the radiation.... my diagnosis is similar to yours and I had the bilateral mastectomy, had one positive node out of 18, and my doctor said I would not need radiation. Everyone is different here, some have gotten radiation even with no positive nodes, I don't understand that. And people like Lisa, who also has similar diagnosis to us, didn't have to have it either.
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Enjoylife I do not wrap my arms at night. I have managed to keep things under control with the compression sleeves. It is difificult at time becuase it is so dang hot here this time of the year. But in your case, you really should consider wrapping at night. Give it a try, can't hurt.
Lisa
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Weety911, my onc routinely prescribes neupogen shots at the start of treatment. I do them days 2-6 each treatment (had tx #5 last Wed.) and haven't had any problems with white cell count. I was so chicken about giving myself a shot at first that a good friend, who is a nurse, came over every day to do them for me the first two txs. Then she had to go out of town one weekend so she "talked me through it" and I have been doing it myself ever since. Something I never thought I'd be able to do! They seem to do the trick.
Good luck,
Becky
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Thanks girls, at least I know there are others twitching uncontrollably. Does anyone also get stiff necks and back aches. Also are there any old timers that are still doing well today. I am going for #4 this week and have heard it gets worse Can anyone explain. So far it has not been so bad and I am still shaving my legs just not as often. For the low WBC I get nuelesta 24 hours after treatment and so far so good. My counts have stayed in the 11 so far. I do feel a bit more tired but still going. I think my neck hurts from the hats I am wearing:)
Thanks ladies
Blessings and Hugs
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Sorry I haven't been on very often lately. There have been so many posts and I have been very busy at work and with some business travel.
Weety, it is very common to need Neupogen or Neulasta with this chemo and the need usually starts right away. My onc starts out trying to do without it. 3.3 isn't terribly low assuming that is thousands per microliter (K/uL) but they also look at what percent of the white cells are neutrophils - the type of white cell that fights infection - and perhaps that was low. About a week after my first chemo treatment, my white cells went to less than 1.0 and my neutrophil percentage was tiny so I had almost none of them. Three Neulasta shots fixed that up and I had Neulasta for all the remaining chemo treatments. It made me nauseous, an uncommon side effect for it, but that was better than the way I felt without it.
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Ladies,
So what's the difference between the Neupogen shots and the Neulasta shots. Is one more expensive than the other (in other words is that why my insurance is providing the Neupogen ones?) Does one work better than the other? What about side effects? Should I push for one over the other?
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Shelclaire...I had a mastectomy and one positive node and I am getting rads. I am almost halfway through. My radiologist here was iffy about whether I should get them or not because my margins were clear around my tumor and I had 13 nodes removed. He suggested that I get a second opinion from a breast specialist radiologist in St Louis (3 hour drive away). When I went to see her, she explained everything very throughly to me and actually told me that (IN MY CASE) without rads I would have a 25% chance of recurrence and with rads, under 5%. And, she felt that my benefits outweighed my risks. So, that sealed the deal for me and I decided to go ahead and do it. If I were you, I would get a second opinion. It is a piece of mind. Oh, and I had eye twitching too during TCH, drove me crazy, but like Wendy said, it just went away I guess one day and I was so glad!0
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CCBABY- They suggest that new studies say radiation is more effective with or without nodes. I just did not think I would have to do it. A little bummed but defiantly would love the odds if mine are like yours. The only difference is mine was my tumor was a bit smaller and I am triple positive. That would be great odds. I am on week three getting chemo Wed and I have felt great but today kinda blah and achy. How did you girls feel as the chemo accumulated or did it ever change. Today no twitching thank goodness. It tricks me to , one day one eye and right when I get used to it it switches on me. What are the feelings on rads, pain tired etc. Anymore info would be great.
Anyone taking tamox? anyone doing trials either.
Thank you
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Sheilcare I found rad very easy I went every day before work I was already tired from the chemo still so I couldnt tell the difference it went by alot faster than chemo and I didnt have any bad side effects for me it was a piece of cake next to chemo and my chem was easier in the begining at first and worst the last two and I guess its because like you said it accumalates. Hope you have a good reslut from the rad like I did.
Maura
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Did you burn and can you explain what was worse? I have had no nausea and most days are good 2 are kinda bad and just sleep or hang around the house. We are planning a cruise 3 weeks to the day of my last chemo and want to feel good. Anyone move there days a few ahead. Anyone have nail problem or hearing problem. I never got a port so far so good thank GOD. I have emends but have had no problem so I hear it gets worse and wonder if nausea is part of it and should I take them this time. I am at Mayo and get aloixi and it is good. Thanks ladies for helping me rest at night.
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I never got sick infact at times now I get nausheted more because I have to take water pills for my fluid buidup with my arm by the time I got my last one I definatly felt worst but every one is worst my muscles hurt more but I went on a trip a few weeks after my last chemo also. Make sure your doctor is aware its a cruise so they can give you some meds incase the cruise makes you sick that way you'll be covered. My motherlaw did burn from rads but they gave her some onitment and it was because she is built like Dolly Parton seriously but she is also 78 . I had nail problems and still do they got better and it came back the tree oil helped me alot and I would keep them painted.
Maura
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Weety, Neulasta is a stronger long-acting form of Neupogen. My oncologist said that one Neulasta shot is about the same as 10 doses of Neupgen and that Neulasta would be too strong for me. If it overproduces white cells, then the spleen has to get rid of them and it is better to not do that. She also said that the side effects would be worse with Neupogen. The newer more expensive medication isn't always the best.
Neulasta is more expensive, but Neupogen isn't cheap. When I picked up mine at the pharmacy, the receipt says the cost to them to show what my insurance saved me. It was over $400 per dose and I had 3 doses per chemo. Fortunately, my co-pay was only $10 per prescription. I think Neulasta is thousands per dose though when folks have compared cost, there is a lot of variation.
Some of the oncs seem to like Neulasta because it takes only one shot per chemo so patients can come in once to get the shot the day after chemo. For Neupogen, they taught me to give myself the shots. It was a little wierd at first but no biggy.
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Hey Lisa, we are almost done with Herceptin!. Because of my doses being adjusted around my trip to Europe last week, I get it tomorrow and once more in 3 weeks then I'm done. I'm looking forward to getting my port out.
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Dang Blue! How did you beat me! I am not done till Oct 20 and I never missed one?!
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Lisa, a "year" of Herceptin is often 17 treatments x 3 weeks = 51 weeks. But my onc, like yours, goes by the calendar and would have given me 18 treatments with the last one on Oct 20 so it would be 54 weeks. But I had a meeting in Europe last week and was going a bit early to do a little sight seeing and get a cheaper fare. So 4 weeks ago my onc gave me a 2-week dose instead of the usual 3-week one. I got another 2-week dose 2 weeks ago before I left on my trip. I'll get a regular 3 week dose tomorrow and my last one in 3 weeks.
So I'll have had 16 3-week doses plus 2 2-week doses. (48 +4 = 52). If it is any consolation, I'll still get stuck 18 times.
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SHELCLAIRE- YES ! the back and neck aching was really bad with me. after my first tx it was the worst. My boyfriend tried to massage it for me and i was too sore to let him. Even his light touch was excruciating! I am now almost 6 weeks post tx and last week i had my first massage (thanks to LISA's suggestion THANKS LISA!) and it helped me so much! i go back this Tuesday for more! I have set money aside to do this once a week for as long as i need it.
By the way my twitching as gone away too, Like CAKELADY, i get it once in a while but just now noticed by this conversation that it is no longer constant! YAY! my eyes still water like crazy, but that is not supposed to go away for a while still.
BLUEDASHER- i have 9 months left of Herceptin and I am like you, CANT WAIT TO GET RID OF THIS PORT! it drives me nuts. why does it have to be right on my collerbone where almost every tank top, v neck, spagetti strap shows it off? I will be thrilled to have THAT procedure! haha
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trish...I hate my port too and can't wait to get it removed in March next year! I have a hard time figuring out what to wear so it doesn't show. It looks like an alien protruding out!0
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Blue, now I see why you are finished earlier. I can't wait to be done with this. I think my body is saying very loudly that it IS DONE with the chemicals. Also, can't wait to get rid of the port!!
Lisa
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