Taxotere, Carboplatin and Herceptin
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Fawn: Love the fight song!
I've done 2 tx of Taxol/Carboplatin/Herceptin. I'm getting 6 every 3 weeks, then Herceptin every 3 weeks for a year. So far, so good - no major side effects, but a lot of the same things you guys have had - red flushing, fatigue, and aches and pains from the Neulasta shot. My hair is pretty much gone - sort of a monk's fringe around the botton, which is quite attractive, let me tell you! Oh well, my hair was thin, fine, and a mousy blonde color, so most of my high school students think I look about 10x better in my funky reddish wig with black roots and blonde hilites. My husband told me that I should have been born with this hair! Thanks, guys!!!
Kimbly: I had expander reconstruction on 3/19 (with a unilateral mast) and I have had VERY little problems/pain so far. I've only had one fill, and my PS is being very conservative - only 30 cc's at a time. He tells me I'm one of very few patients who has been so lucky about the pain, but I don't think everybody has the same painful experience that many people post about. Hopefully yours will go well also.
Sue
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Cindy, No I'm not retaining fluid, sorry can't help you there. I am curious about the downgrading from 4 to 6 treatments. I wasn't sure I'd be able to have my 3rd treatment this week because my liver enzymes were elevated in the bloodwork I had last Thursday. I had to have a second draw on Monday and since they were back to normal I did have my treatment. I've been thinking that if it becomes a problem again, I'd like to stop at 4 as well. What was your oncologist talking about when she said it works so well??
I gained 5 pounds in the first 5 weeks, but I kicked butt last week and lost it. It's such a battle and I have been eating way too much. I hope I can do better for the last few treatments, how ever many I have left.
My worst days are 4 through 8, yuck. Good Luck Mary
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Mary (and all),
My oncologist said that most likely it's the steroids or carboplatin causing fluid retention and worsening farsightedness. Apparently, those things should return to normal after I'm finished with chemo. My worst days are 2-6, so at this point in the cycle, things are looking up.
About decreasing the number of treatments from 6 to 4 - this was my oncologist's recommendation. The only reason we initially said 6 was because that is the number that has been studied most, in correlation with the other major chemo that has 4 treatments - AC. She said that she gets awesome results TC with metastatic patients. Many apparently have NO CANCER after 2 treatments. From her perspective, with a small tumor and no lymph nodes involved, 4 rounds of chemo should be plenty. She feels that over the long run, we will "get the most bang for our buck" with herceptin and tamoxifen. The chemo is primarily for clearing out any renegade cancer cells. I found all of that quite heartening. This regimen has been a challenge for me. Any possible side effects that could have happened, have happened. I will be happy to move on to the next phase of treatment!
Take care,
Cindy
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I agree with the side effects, I feel like crap today. Tired, dizzy, nausea, confusion etc. I would be so ready to stop after 4 or possibly 5. Of course, one difference is that you are triple positive and tamoxifen will not do me any good, so we'll see. Good luck and keep posting. Mary
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Hey. I'm new to this realm. I had a 1 cm HER2 positive, hormone neg., no nodes removed on the right side with mastectomy. I don't believe in babying myself. I ran a half marathon two days after the lumpectomy wearing two running bras and peeled four minutes off last years' time. Now we're talking about TCH, and I wish I had a punching bag, I'm so angry. This blog has helped with what to expect physically from the treatments, though. I'm wondering how you all deal with the psychosocial aspects of telling people in such a way that you don't have to deal with a backwash of gooey sympathy and fear. I really don't want other people's reactions sliming me with even more fear and negative emotions. Also, how do you discuss it with children? I have five kids, ranging from 22 to 9.
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Shelbaroni,
I stay away from people who are negative. I had a great friend who put off so much negativity that it took two months for me to see her again. Some just don't know how to give support. Cling on to those who support you, you will need them. You will get the stares and the whispering but you will be strong and learn how to avoid certain uncomfortable situations.
As for your kids, if they are anything like mine then they will be wonderful. It is not like you planned to have this or could have done anything to prevent it. They will learn from you and see your strength and become stronger people themselves. Cry together, laugh together---just get through it together. TCH is doable, I had my third round and am halfway there. You will feel awful for a few days every three weeks. These are the times you will need your family to help.
Good luck!
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Welcome Mary, Cindy, Tomato Juice, Shelbaroni, Sue and LisaAnn!
I wish that you all did not have to be here, but I am glad that you found this thread. A lot of the regulars who posted when I first joined don't post as often - and that is a good sign to let you know that there is life after chemo.
I finished chemo in October and will finish herceptin in July. It has been a long road, and I am happy to see the end of it. Please read this thread and come back often for support - it was a great comfort to me on my bad days.
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Thanks, Lisa Ann, for the encouragement. I've been pretty much on the down low all along, since I never want to be perceived as weak or needy. LOL So even though since Nov. '07 I've had three biopsies and a skin-sparing mastectomy, many people, including my two youngest kids, just think that I've had "some kind of surgery involving my back". So it's becoming quite a personal challenge to even tell my best friends, most of whom know the whole scoop now. But now I'm having a run of chance encounters with acquaintances I haven't seen in a long time. It's interesting how a little voice will just tell you who to tell what to. But after I start my treatments, it will be out there for the world to see. I guess it's hard to be the kind of person who never lets down their towel in the locker room (like I am) when you're having chemo. Unless you never leave the house, you're stigmatized in many ways. Invisibility would be an awesome super-power during treatments, wouldn't it? Maybe I'm too philosophical...
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Just wanted to say thanks to all of you. I was diagnosed 9-25-07. 1.5cm,grade 3 stage1 ER-/PR- HER+. Had mastectomy on 1-16-08 with reconstruction no problems. Started TCH 3-5-08 just finished round 4 on 5-6-08 2 more to go. I have been reading your comments since the beginning and it has really helped me get through this. Thanks again. Mary Anne
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To Maryanne--It's encouraging to see someone else who didn't go straight from diagnosis to mastectomy to chemo-badda-bing-badda-bing. I have pretty much the same picture: 1 cm, grade 3 stage 1 ER-/PR- HER2+. I was diagnosed November 9, and didn't have my mastectomy until March 26 because I had to get the right surgical team together...had to consult with a lot of people before I found the dream team. Then the decision to even do adjuvant therapy has been agonizing. I haven't started yet, but I guess it's not too late, huh?
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Oh...another thing. Has anyone out there had heart problems related to the Herceptin? That's one thing I read about that's a little creepy.
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It is not too late and believe me you can do it. I was the one that no way I was doing chemo. But my doctors and the team of nurses are great. I have had side effects but they have stayed the same the 1st week is the hardest and I am still working. And as far as everyone knowing after you start chemo that is up to you I don't think anyone would know I was doing chemo if I did not tell them and very few people do know. I have no problems with the herceptin at all. Do not put the chemo off it is not that bad just get it over with. Take Care
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shelbaroni: Welcome to this thread - sorry you have to be here, but this is a good place for advice. I had a lumpectomy/re-excision/ and then mastectomy on 3/19 then started Taxol/Carboplatin/Herceptin on April 2. I've had two treatments so far, and it's "doable." I've actually been surprised at how normal I've felt. I'm a high school teacher, and I've taken off Tues-Fri of treatment week. So far so good regarding the possibility of heart damage.
Best wishes -
Sue
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I have been on Herceptin for over six months and I have not had any heart problems. One reason why I chose TCH over AC/TH was to lessen my risk of heart problems. I have echocardiograms every three months (3 so far) and they have all come back normal.
Terri.
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I've only had 3 treatments, but so far herceptin is fine with me. I go to a group of 4 oncologists and they all seem to be amazed with the results people get from herceptin. Two of the doctors (one female and one male) on seperate occassions told me that if they had to have breast cancer they would want it to be her+. I get severely ill from the taxotere, 3 days in bed and another 3 with nausea so they're still trying to find something to help with that, but at least I'm halfway through. Good luck, Mary
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Shelbaroni: You are right to be concerned with the heart damage. That was a driving force for many of us on the TCH regeime. I mean, it seems like the only smart option for us HER 2+ gals, and why more women aren't on this is puzzling to me. I mean why put your heart through the double whammy of AC and Herceptin if there is a better way? Ugh! Can someone give me a hand? I need some help getting off my soapbox!
Having said that, I have been on Herceptin for about nine months and I have not had heart problems. I am tired, especially the day after treatment, and I get a pimple like clockwork around treatment time, but that is about it for side effects. I get a MUGA scan every three months, which measures the percentage of blood that your heart ejects on contraction. In women taking Herceptin, they look for a percentage number higher than 50%. Mine have been lower than pre-treatment, but still above 50%.
From what I have heard, heart damage from herceptin is reversible once you stop taking the drug - unlike damage from AC. I think that if your MUGA stats drop lower than 50%, they hold off on the Herceptin until they normalize, and I assume, you pick your treatment back up.
Check this out regarding Herceptin side effects: http://www.breastcancer.org/treatment/targeted_therapies/herceptin/side_effects.jsp
Mary: I am sorry to hear about your nausea. What do they have you on for it? Seriously, there are no many good drugs out there that control nausea - there is something that will work for you.
I was on Compazine, which was great, but caused me to have a really bad reaction after taking it for two days. I felt really anxious, jittery and almost like this ball of dread was building in my chest. I have heard this reaction called a feeling of "trying to run around your own center of gravity."
Anyway, they moved me to Zolfran - very effective, but here is a heads-up warning, a little on the costly side. I hope that they find something that works for you!
Thinking if you all,
Nanette
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Thanks, Nanette, Suemed, Mary and everybody for all the encouragement. Now I'm just trying to wade through the jungle of which doctor to go to and trying to get office staff to call me back just to set up an appointment. It takes persistence just to get going. And I haven't even started treatment yet!
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shelbaroni: Oh, making all the appointments is another big hoop to jump through. Have you had your port installed and had the "pre-treatment" tests (MUGA, scan(s), etc?) I felt like I was chained to my cell phone while I was setting all of that up - plus the inevitable goof-ups involved with dealing with two surgeons and an oncologist at the same time. (They scheduled me with my plastic surgeon's BROTHER which then screwed up everything else.) Anyway - now that I just have my reconstruction fills and chemo to schedule, life is much less hectic.
Best of luck - (Just keep your patience!)
Sue
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Sue...The answer is "no" on the port and the pretreatment bru-haha. I can't even get in to see the bloak, because my original surgeon who referred me to the guy is being putzy about forwarding over the medical records. It makes me want to tear my hair out before the treatment does it for me! I just did yoga for the first time since my mastectomy, though. Feels great! Then I painted a portrait of Muddy Waters. I feel well-oiled and spent!
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shelbaroni: Yoga and painting - sounds like you have some good stress relievers; I pretty much bit my fingernails and drank copious quantities of wine at the stage you're at. At least my surgeon and oncologist work together, so I had no problems there.
Hang onto your hair as long as you can. Although I have thin, fine, mousy hair, so I got a funky reddish wig with highlights and everybody likes it. My husband says it's the hair I should've been born with, and my high school kids told another teacher that it looks SO much better than my own hair. . . thanks, guys! But it's HOT, and not going to get any better since I live in Phoenix.
Hang in there - it gets better ( or at least less crazy) -
Sue
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You have a right to a copy of your medical records. I would get them and let the appointment setter know you have everything. My PCP referred me to a surgeon in-network that I didn't want to use. The "in-network is better" thing only lasted a week for me before I called the imaging center and path department at the hospital and got my mammo films, slides from the biopsy, pathology reports. I then went to a surgeon that a friend of mine used (still in my health insurance network, but a different group of hospitals). She did work with the cancer center I wanted to go to (tumor boards and all that). Right after my first appt. with the surgeon, I called the cancer center and got an appointment for later that afternoon when I told them I had all my films and reports.
Even now I get a copy of every test result. The only things I haven't gotten have been the MRI and PET scan films or whatever they produce. The place I now go to for mammograms has digital so they print me a copy of the film before I leave.
Terri.
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Suemed...about the hair thing. I've always had medium length to long hair. I was thinking about getting a really butch cut (quasi Annie Lennox or something) about the time I start treatments so that no one will be compelled to call animal control when I start leaving large rodent-sized clumps of it on my pillow and strewn through the house. Then, when the critical mass starts to detach, have my husband buzz it. Does that sound like a plan? What fun things we think about when we wake up in the middle of the night... Have any of you had any interesting or irreverent things henna-tattooed on your heads?
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Hi girls,,,,,,,,,havent posted in a while. Been busy with the grandson and the kitchen remodel. They are finished and I have my kitchen back. Took wayyyyyyy to long. lol
Katy, Leslie, Chemomom, Janet, Goodvibes, Nan, Carolina,,,,,,,,,,hope you are all doing wonderful. Guess its good news when we dont post as often huh? That means that things are going well and we are pretty much back to normal. And to anyone else I have forgotten to mention,,,,and to the new ladies,,,,,,,,,,Hiiiiiiiiiiiiiii. lol
I finished with my herceptin about two weeks ago. And life is just moving right along. I cant believe that my next dr appt is in July,,,,,,lol Sheesh,,,,,,I was so used to go to some kind of dr every other week that this seems surreal to me. But I love it. lol
The hair,,,,,,,,,,,welllllllllllllll,,,,,,,,,,it sure is taking forever. Its probably about two inches long in the back and the top is about 1 1/2 in. The back came in faster than the top. Its just so fine and thin,,,,,,I still wear my wig. Way too short and not for public viewing yet. Now that I finished with the herceptin,,,,I wonder if it will grow faster?? My hair used to grow really fast but its so slow now. When it gets to a couple of inches on the top,,,,,,I think I will go to the salon and get it trimmed up. Its awful looking to me that is. But I have dyed it,,,,the gray just wasnt workin for me. lol
Post girls,,,,,,,I would love to know how everyone is doing.
Take care all,,,,,,,,,,,,,and to those of you who aren't finished yet,,,,,,,hang in there,,,,,,,,,it will all be over soon.
Cindy
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Hi and thanks to Cindy and all the "veteran posters" for this website and encouragement. This diagnosis was (is) tough for me since the pathology report loves the word "unfavorable", but I believe in Herceptin, and all of your positive words means so much.
Shelbaroni: Are you working out all the craziness? I like the henna tattoos on the bald head. I've hung onto a little "monk's fringe" - I pull a little out around my ears and I make myself believe that it makes my wig look a little more realistic.
I had tx #3 yesterday and other than the glowing neon pink cheeks, I feel fine this morning. Of course, getting the Neulasta shot later today will knock me on my can a little bit. But really, I've found TCH to be relatively easy to do so far.
Thanks again to the veterans! You've meant a lot to me.
Sue
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Had my second TCH May 14 For me, this time the only really bad day was day 3. The day after the nuelasta shot, and even then just a little achy. For some reason I was very emotional on that day too, cryed alot, and seemed a little wired. I think maybe it was the decadron. Day 4,5,6 did everything as normal-even worked out on the treadmill a bit. This is so doable.
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Had my second TCH May 14 For me, this time the only really bad day was day 3. The day after the nuelasta shot, and even then just a little achy. For some reason I was very emotional on that day too, cryed alot, and seemed a little wired. I think maybe it was the decadron. Day 4,5,6 did everything as normal-even worked out on the treadmill a bit. This is so doable.
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Hi ladies- I finished my tch blend back on 2/13 and still go for my herceptin every 3 weeks until Nov. My strength is almost 90% of what it used to be, my endurance only about 75%, but it is improving! I have completed 7/35 rad tx without any problems. The main hassel is just going there every day of the week for my 15 minute zap.
My hair is coming back nicely. It isnt very long, but better than bald and not bad under a ballcap. I credit that to taking the supplement biotin. It helps both hair and nails, and the taxotere really killed my nails. They lifted from the nail bed. It really hurt and they then turned brown. I have cut them down to the quick and they are growing nicely. Not everyone has nail issues, I believe the biotin has really helped them to heal and grow out.
My onc told me that her2 was a very neg prognosis a few years ago, but with herceptin he believes that in a year or two they will be touting it as one of the best. Herceptin is one of the drugs that truely saves lives by preventing recurrances. It is worth my time and effort. Taken by itself is a breeze. I do take claritin for a few days because i get achey with a runny nose, like i am coming down with a cold. Everyone is so different.
Keep the faith, time passes quickly. Do wear sunscreen outside over this holiday weekend and the summer months. Chemo does make us sun sensitive.
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tomatoejuice ... the decadron made me hypersensitive to anything people would say and very emotional ... thankfully, it only lasted a few days.
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mrs7148: Thanks for the encouraging words. The recent AARP magazine (yeah, I'm old!) also talked about how much the prognosis for Her2+ has changed recently. I felt like I'd been handed a death sentence when I saw my path report, but this website has been a blessing.
thanks,
Sue
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CINDY!!!! I was so glad to hear from you. I figured you were busy with the grandson and the kitchen - and I knew that May was your "OVER IT" day. I was thinking of you and I am glad to hear that life has you busy living!
April 30th was my one year survival anniversary. I know that there is a lot of confusion about when you start counting - but since treatment plans vary - the real date is your date of diagnosis....a starting point that we all have in common. I have THREE Herceptin treatments left and I am looking forward to the time when I am not getting poked every three weeks!
I also had a digital mammo and although they are waiting to get last year's films before making a final reading, there wasn't anything immediately concerning. You take the good news as it comes, that's for sure.
The hair is still too boyish for me to feel comfortable going topless, so I still wear my wig. Can't wait to ditch that and have girly hair again.
MRS: I am glad to hear that you are achy! LOL - Okay, so maybe I could phrase that better. But I am on tamoxifen, and I have these days when I am really aching. I never thought to match it to my Herceptin infusion, but now that you mention it, some women can have aches and flu-like symptoms. I thought the likliness of that decreased as the infusions wore on, but maybe tamoxifen and Herceptin is a one/two punch.
I want to think that combo is the culprit and not the tamoxifen - since I have to take tamox for five years. That is a long time to ache, and the only alternative (removing the ovaries) seems a bit extreme...not to mention the side effects!
Thanks for sharing - even us veterans have a few things to learn!
Hope the vets are doing well and the newbies should keep coming back - even if you just read. We are stronger together!
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