Taxotere, Carboplatin and Herceptin
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Good morning, I thought I would be done with herceptin in two weeks but was told yesterday when I went in, that you need to do so many weeks and not a year. Has anyone heard this and do you know how many weeks you have to be on it?? I was so hoping to be done!
thanks
Karen
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I was told I needed 17 total (6 TCH and 11 herceptin only). That would be 17x3=51 weeks, just short of a year. That's what he said at the beginning. Now I have only 4 Herceptin left and am seeing onc on Tues and will confirm it again. I should be done in April and am hoping to schedule my de-port operation for May. THAT will be one surgery I am looking forward to!!!
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I was disappointed when they told me I had 2 more Herceptins left but I never understood why even though he tried to explain it. I guess I had made up my mind I was going to be finished by June and ended up the last of July. I made it of course but I am still going every 3 weeks for blood test and port flushes every 6 weeks. I want so bad to get stronger but can't seem to get the old blood count up. I know it is not all due to chemo or cancer but auto immune problems I have had for many years. I will not get de ported any time soon he said and could be indefinitely. I wish I had the mammogram when my PC told me to but I was so sure I would not have a problem because for years it was clear and only fibrocystic lumps and I was not liking getting the girls smashed. 4 months later I have a big lump that is not feeling like the others so I sneak off for my mamo without telling my PC doc and sure enough it is cancer. I knew it when I first found it. It was a year and a few months from my last one and then it was there. Ladies please tell every woman you know to get those mammograms. It can save their lives! I am on a soap box now about this. Too many in my life have died from cancer these days and I don't want anymore. Not all breast cancer but just tell friends if something does not seem right to get checked. may not be anything but could be. Pay a doctor to tell you nothing is wrong and it is better than waiting to have one tell you something is very wrong.
Carolyn
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thanks Amy! I guess I'll be going to the end of March. They also started me on Zometa- anyone else taking this?? My onc likes you to have the infusion if you are on Femara. They recommended keeping the port but the idea of having it the 5 years I am suppose to be on Femara is overwhelming !
Karen
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Just like with Amy, my onc told me a total of 17 treatments. I have 2 left and will done on March1!! I can't wait!
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Girls, I was reading over some of the old posts and am noticing that some oncs have prescribed 18 herceptin treatments rather than 17. I guess that's because 17 is not quite the year (only 51 weeks)????? I don't know how many I'll get. I'm only on #9, I think. I can't keep all these numbers straight (chemos, rads, herceptins, months, etc.) Good thing I'm writing it all down!
I'm going to repeat what someone else said on the last page about the free scarf from franceluxe.com. If you go to that site and click on "goodwishes program" they will send you out one of their beautiful scarves, your choice of pattern. I chose a black and white silk one and I definately get the most compliments on this one when I wear it! They were really sweet. The scarf even came with a handwritten good wishes card that was signed by all of their workers. Their scarves are pretty pricey, but if you love the free one as much as I did, it might be worth it to get another. Instead of doing that, I tried out some more inexpensive ones from several other companies, but probably wasted just as much $ on the wasted ones I didn't wear as if I had just bought more of the expensive ones! There was one other company's scarves that I did love that were inexpensive (I think only about $15) chemoscarves.com The women who sells them had breast cancer and went into business after she got well. They are cotton and have a really nice form to them with the elastic in the back, so all you have to do is pop them on like a hat and then tie the ends. She has a lot of patterns to choose from. Some of them are pretty hip looking (aka cute enough for us young ones!) I got a really pretty brown one with bright pink and turquoise flowers.
Karen, I think I'll be starting zometa soon, too. I originally was looking at the trial going on (I think its just about to close) but my onc agreed to give me the zometa off-label. I'm not sure when we will start it. Radiation just got thrown in to my life at the last minute. I guess because I'm young and HER2+ and grade 3 and my mastectomy margins were small, they decided to hit me with the rads as well. I shouldn't complain--at least I won't be able to look back and say I should've done the radiation--but when you think you're done, it's a big downer when you find out you've got 6 more weeks of treatment. Plus, I'm tired of always feeling like the black sheep in this whole cancer journey. I'm 39 (but people always think I'm in my 20's) so they stare at me and feel sorry for me as I'm carrying around my baby, and ask me all kinds of questions that they probably wouldn't ask an older women going through this. I take the shuttle bus to my radiation site and I'm the youngest one on it by at least 10 years. I hate the pity. It is what it is. Okay, I'm done complaining. We all know it just sucks anyway you look at it!
To all, have a nice weekend!
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youngmomof3 - glad to hear #2 went well! Sorry to hear about the Port, hopefully they will get that figured out as well. Drink, drink, drink - and then drink some more. The other thing I noticed was how when the fatigue hit around days 4 to 9, if I ate some protein based food, it seemed to help.
I also am going to be on a year of Herceptin - have no clue how many - they just told me a "year", and since I have only had one TCH treatment so far, have a long way to go.
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Wow Maura, you are one tough momma. It sounds like you've been on a tough cancer journey:( I too have 3 sons and going on 34 years of marriage. They all have been sooo.... supportive. I don't know how I would get through this without them. I'm sorry to hear that your hair is taking so long to come in. You mentioned massaging your head...that's the first time I've heard of that. Best of luck with your appointment on Monday!
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Cakelady: Hi neighbor... happy you are at the end of your treatments and starting on your reconstruction. Which brings me to my question and if it's too personal, please don't answer. Why did you choose to have a bilateral mastectomy? The reason I ask is because my cancer was a grade 3 and I had 2/16 nodes. I considered having a mastectomy but my surgeon steered me towards a lumpectomy. He said life expectancy was the same for both. I guess I am just second guessing myself, wondering if I made the right decision.
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Wow, I can't believe it has been a whole year now since my diagnosis....what a year!
Cakelady....Did your PS tell you how much he is going to fill you to? I am surprised he is waiting 2 weeks between each fill. Mine originally was going to have me come in twice a week and then changed it to once a week. Of course, that is all water under the bridge now.
Welcome newcomers!!
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I now have joined the ranks of the shaved head group - had it done today.
Came home to my dog who barked at me - as if to say - who the heck are you? Once I called her name, she stopped - crazy dog!
Of course - no hair as a cold snap decides to hit St. Louis - but I actually like my wig - go figure!
Now that I feel almost normal it is almost time for #2. Curious to see if my mass has shrunk. It feels like it has - but waiting for the "official" measurement from doc. At least I no longer have the stabbing pain that I was having before treatment started. Evidently it has started to press on a nerve or nerves.
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stlcardsfan, Your dog barking at you reminds me of my story. I had bought a wig, but only wore it once (I felt like a fake in it) and went with scarves instead. One day I decided to try my wig on again (in the hopes that maybe there would be some miraculous change in the way I felt about it!) Anyways, the baby woke up from her nap in the middle of me trying to style it so I went in to get her from her crib. She took one look at me and started screaming! I couldn't calm her down until I took the wig off! LOL!!! I guess she likes me bald.
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Say wondering if anyone is having major fatigue, on the non-carbo/tax weeks. I am currently receiving Herceptin on my non-chemo weeks and by the weekend following my Herceptin infusion, I am wiped out. I get up eat breakfast and then have to take a nap. After lunch, by 3:00 pm I need another nap! I am trying to figure out if it is the herceptin or if there are other factors causing it.
For example, last night my hubby came home from the airport at 12:30 a.m. after waking me up with a phone call at 11:30 p.m. to let me know he was on his way home. So I really didn't sleep too soundly from 11:30 to 12:30 and then he was talking to me until 1:30. Last weekend, I was just coming off having my period, so I was kindof hormonal and that sometimes wakes me up, so I again I didn't get a solid nights sleep.
Do you think that's the reason that I am so tired or is it the herceptin, or am I still feeling the effects of the carbo/tax from 1/12?
I would love to be able and get out and get some exercise, but I'm in MN and it has been something like @#%&* below zero with the wind chill right now. I can't go to the YMCA, b/c my neutrophils/wbc are way too low! I did manage to get in some yoga the other day which seemed to help a bit.
They are going to look at my numbers on Tuesday and decide if I need the Neulasta shot! Thus far I have been in the house since... January 19th (medical appointment), with the exception of leaving on January 26th for another medical appointment! AAARRRRRGGGHHHH! My next medical appointment and release from house arrest is on FEBRUARY 2ND!!
I so need my number to be up! I have hardly left the house, since I had my bilat mast with recon, on 12/2! Then it was recovery, so I wasn't feeling much like leaving. Hell I feel like some sort of retiree right now, only leaving the house for MEDICAL APPOINTMENTS!!
So any advice on the fatigue would be helpful right now.... and many thanks for listening to me vent. Oddly enough, other than the fatigue I am feeling pretty good. Just really really tired, and well somewhat bored!
Just-Sher
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Christy.. I think he said I have 500 cc expanders, but I don't remember. He is doing it every 2 weeks, That sounded like the standard way they do it at this hospital, which is fine, I want to do it slow, so it doesnt hurt so much. Right now I am still achy from the surgery and the first fill. I got 120cc at surgery and then 60cc at first fill.
CinCan... I had my tumor on the right side and it was less than 2cm, but I tried the lumpectomy first, and they did not get clean margins, so they did it a second time. They still couldn't get clean margins because not only did I have IDC, but I had DCIS and that was what the surgeon could not get all of. So I definitely needed the mastectomy on one side. But after seeing the plastic surgeon for a consultation, I decided to do the bilateral mastectomy. The reasons being that I was a DDD before surgery. They did not want me to have immediate reconstruction so I would have had to walk around for a year with one gigantor boob and one flat one until my chemo was over . I would have had to have an implant on one side and a reduction on the other, and they would not have matched, and the doctor said also eventually one would droop and one would not. Also because I did not want to have to go thru all this again if I were to get cancer in the other side some time later. So, I decided to just get a matching set..... the original DDD's were just too big anyway and when ever I saw a picture of myself all I ever saw was BOOB's. It's a hell of a way to get a reduction though!!!!
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Wendy..I was filled to 480 cc's the whole 10 months I had it...very uncomfortable!
Just-Sher....it is probably left over from your chemo... I didn't have weekly infusions of Herceptin. I had it every 3 weeks with the chemo and I was extremely exhausted, especially the first 10 days after. Now that I have herceptin only, I do not have any side effects from it alone at all.
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Sher...Fatigue plays a huge role in this whole chemo trip. Those chemo chemicals remain in the body for a long time and they are cumulative. Your body is working hard to compensate for the damage it all does to good cells. Surgery alone is an energy consumer, any kind of surgery. Radiation is also an energy depleter in the same sense that the body is trying to "catch up" with the damage done to healthy cells. Of course everyone is different, but do what feels right for you. Rest/sleep is a good thing. (And of course drinking that water.) Fatigue will abate when you finish your TC and are on H only.
Cin Cin... I had DDDs too and opted for bilateral mast. My surgeon told me pretty much the same thing about being "out of balance" and possibly developing back/spinal problems from the weight on one side. (Remember how they used to warn you in high school not to carry your books on your hip?) I did not do reconstructive surgery, but at my age (68) it didn't make much sense to go though all that. To tell the truth, I'm pretty happy running around braless or wearing just a modest mastectomy camisole with polyester fake boobs for a little shape.
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Christy...wow ya you had expanders for so long and then to have it all for nothing. But you're doing great now huh? How are you going to deal with your hair? I want to grow mine back to shoulder length, but what to do at the in between stages is not clear. My sister is also a hair dresser, and she said there are a lot of short transitional hair cuts that I could have while growing it out. But I don't know because if I trim it at all I think it would just take so much longer to grow. It doesn't seem to grow that fast anyway, or maybe its just me. Have you trimmed yours at all?
Swampy... Ya it was nice to be rid of the DDD's for a while. If I was older I would not do reconstruction either, but at 46 I thought I needed to, and my hubby wanted me to also.
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Cake Lady getting your hair trimmed every 5 weeks helps allot my hair is one of the heads that hssnt came back and I am on some meds for it which helps with the swelling of my arm at the same time but I know its grown longer quickly from the trims just not spreading I have no thickness. I really think you will like the shape of it when you trim it out every 5 weeks I am due for one next week and this time I am having him cut it different lengths so I can spike I need to go wtihout a hat by spring that is my goal ..Not sure if my hair has the same goal god knows I have begged it to grow and god has heard enough from me he wants to give me a busy signal..
Maura
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Cakelady....I have trimmed my hair every 4 to 5 weeks since the end of chemo. I just take off the very tip ends. You need to cut off the 'chemo ends', so it will be healthier when growing out. You will be amazed on how better it will feel and how much faster it will seem to grow. I am going to grow my hair on out and just keep trimming the ends only. It will probably take a while, but I think once we are off of Herceptin, it will grow faster. I just trimmed 2 of the girls here on these boards... Gramof3 and Alyad...they live here in my city and we met through these boards and found out that we go to the same hospital...us 3 are all a month apart of when chemo ended, and I am in the middle, so I can see what my hair will look like in a month.
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Enjoylife....where do you live in MO?? (if you don't mind me asking)
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I had my hair trimmed for the second time, It looks better because it does not grow even and looks messy so I needed it to look neat. I don't have much growing on top. It is covered but is not as thick and does not grow out as fast as the sides and back.
I am glad to see so many doing well and the tiredness is a problem. I always seem to be tired but I do think exercise no matter how little makes a person feel better and getting out of the house too but with these winter temps make it hard to do much. I was afraid of catching something for a while but when I went back to work I did okay and then someone got H1N1 and sure enough I got it too. I got Tamaflu and it was not too bad. Just be careful when in public not to touch things with bare hands. I aways use the end of my sweater or something to push elevator buttons and try not to touch hand rails etc with bare hands but I also wash my hands a lot and try not to touch my face. drink water and wash the poison out of your system and if you do everything you can you will do good.
Carolyn
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Cakelady & Swampy - Thank you for sharing your stories with me. The surgeon said everyone is different with their own unique situation. My tumor was small and very close to the surface on the bottom right side of my right breast...post surgery my breast look the same except for the scar, which the surgeon said will fade. Well, it sounds like we all made the right decisions and we need to look forward (not back) and concentrate on getting well and back to normalcy. Thanks for the inspiration♡0
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May I join you? I found out last week that I will be on the same regimen as many of you, starting the end of February. Waiting to get the date for my port surgery. I will also be participating in the biphosphonate study. Thanks to all of you for posting ... it really helps to know what I have coming up.
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Welcome Frosty1. So sorry you are going through this but glad to have you join with us. These ladies are incredibly helpful and supportive. I finished chemo in August and will finish Herceptin in April. Don't know if I would have made it without them. Ask all your questions - someone will always have good feedback and advice.
Amy
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Thanks Enjoylife and Christy... I guess I do need to do something. I wish my sister still lived here in CA so she could cut my hair,, she lives in Idaho now. Too bad you can't cut it for me Christy.
CinCan..you are welcome, everyone is different, but yet we go thru a lot of the same stuff and can relate to eachother, and that is what is so great about these discussion boards. What hospital do you go to? I go to Kaiser Baldwin Park for oncology and to Fontana for my plastic surgeon. I live near Don Lugo High School, how about you?
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Welcome, Frosty. You're almost the same diagnosis as me. I've been dealing with this since the end of October, and got through lumpectomy/reconstruction, port surgery, and loads of tests and appointments. This is my last week of Chemo Prep, which seems to be like preparing to go do a tour in Afghanistan. I start battle on Monday. So far I've gotten through it all just fine, and the women on this forum have been a huge help. You're good, if sometimes grumpy and uncomfortable, company.
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Thanks, writer ... it's so nice to have people that can tell you what's going on and if you are "normal" (what is normal anymore?). I'm having a "Hair Today, Wig TOmorrow" party the end of the month and encouraging people to wear wigs, write down their favorite funny movie and write down an inspirational thought or quote that I can read while I'm getting pumped full of junk. I am glad to see that we have the same profile -- for a long time, I couldn't find anyone that was HER2+ and I was feeling lonely!
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frosty1, you're my kind of gal! A friend has organized a gathering at our house this Thursday to organize friends and family to help if I need it. I'm going to have them all write down their favorite funny movie. And I might even have her email them to encourage wig wearing. Going into this ordeal (I start chemo Monday) with a light spirit can only help!
You should join us on the Starting Chemo February 2010 topic. Seems helpful to feel like we have a company of soldiers going into battle together.
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Ok ladies - here's what happened to me today.
Saw the onc - good meeting. He confirmed I only have 4 more H to go and then i can get the port out in late April/early May. YAY! Also agreed i can go for the Neratinib trial, even though it isn't in his cancer center. Gave me some grief about my weight (gained about 15 since Tamox started in Oct) and I felt very discouraged about that.But the big thing is .....I just exhausted COBRA and started new insurance on 2/1. Blue Cross. Thought that would be fine. Showed them my info and they had a little 'sit down' with me in the office (I knew that was bad when she said to come in and sit down) and said that they have problems getting some insurance cos to cover herceptin. AT ALL! Mentioned Blue Cross, Aetna and a few others I dont remember. it wasn't about my specific plan, just Blue Cross over all. So they are moving me to another chemo room, which is administered/billed by the hospital, not their specific practice. That way, if ins does NOT pay, they will 'write off most of it' which their practice is not able to do. Well, i was stunned. What is "most"? Herceptin from what I've heard is $6K/treatment. Even if they write off $5K (which would be very generous) that leaves me with one hell of a bill. Thank GOD I only have 4 to go. i asked if I could get this pre-approved through the insurance co, and they said no, that either they will pay or they won't.
My question - has ANYONE on this board experienced anything like this? PLEASE send any info you have, as you can imagine I am pretty shaken up by this.Then had a mammogram. They nicked my port with the plastic thing they squeeze you with and I really yelped and got tears in my eyes. It HURT. But mamm is all clear and when I saw the breast surgeon, she was all happy and everything is good. See her again in July. So that feels like progress.
WAY TOO MUCH of the cancer world for me today. Felt like i was moving further away from it and DID NOT LIKE the re-immersion.
But the most important thing is the insurance question. Ladies?
Thank youAmy
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Amy, I have BCBS insurance and had no problem with them covering herceptin. Maybe it's different in your state, but that just doesn't sound right. Good luck!
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