Taxotere, Carboplatin and Herceptin
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Wow, Emster, how generous of you! I'll PM you my address. You are so sweet! Thanks!
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Good to hear from you Alaina and so sorry the med made you feel so bad but hopefully that is all over with. I want pics when you are looking good again!
I know the drains are a nuisance and I thought I would never get rid of mine but I only had a lumpectomy with one drain. I can not imagine having to deal with more than that. when they started pulling it out. I ask the doc where all did that thing go? I still have a big indention where it was but it does not matter.
Where they did a biopsy after I had radiation is still not healed so I don't know what I would do if I have to ever have surgery again. I keep getting pus and lumps coming out of the 2 holes they made. Once for a needle biopsy and once a small incision but my onc says no more antibiotics. I am still battling low hemoglobin and antibiotics can kill the red blood cells so I guess it will finally stop but it has been draining since June. I had the biopsy in April and it finally erupted in June. I have fat Necrosis from radiation and I think it is falling apart and coming out but I will wait until I see my onc again next month to find out what he thinks again. He was so mad because the surgeon gave me antibiotics so he will be seeing me if I get worse. He wants all the say so about it.
So glad everyone is doing well or seems to be.
Carolyn
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Anyone have any problems while on just Herceptin? I'll be having my first Herceptin-only tx next week and wondering if I need to be aware of anything that might crop up. Thanks.
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Carolyn, I'm sorry you're having healing issues. This thing never ends, does it? Hopefully it will resolve itself soon. Any idea what they can do if it doesn't? Surgery to remove the necrosis? Good luck and hugs to you.
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Wife is 30 days into TCH (1st was Aug 9, 2nd was Aug 30) and no hair lost (yet). None, not at all.
What is the average amount of time you all lasted before hair loss? What is max you've heard before hair loss. Anyone NEVER lose hair with TCH?
Thank you.
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Sun Diego-at about txt 3, I started losing quite a bit. But, I had TONS of hair to start with. I didn't need to wear any type of a cover on my head until after txt 4. Then, i had enough hair that I could get away with a baseball cap until 6 weeks post final chemo. After that, it started to thin more. I finally shaved my head 9 weeks post final chemo. Glad that I was able to keep my hair as long as I did. I also didn't lose my eyebrows or eye lashes. They did thin a bit, but that was about it.
Also, my 6 treatments of chemo wasn't nearly as horrific as I thought it would be. I have a 2 yo and a 3 yo and it was challenging but totally doable. I actually was able to exercise almost daily. The exercise was was huge mental thing for me. For me, this is what kept my anxiety at bay. Also, my onc said it was a huge factor in me not having tons of fatigue.
Bon-the only side effect I have noticed is a slight runny nose. Congrats on being done with TC.
V
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SunDiego...I only made it about 16 days before my hair started dropping out all over the place, so your wife has made it twice as long as I did. When I was stying it that final morning, so much hair was falling on the floor, it was slippery like an ice skating rink. So that evening a friend with an electric razor buzzed it off using a #2 guard. It wasn't as traumatic as I thought it would be and now I'm pretty accustomed to walking around bald in the house. I've even forgotten that I didn't have anything on my head and answered the door bald as can be when a young kid came to collect something for the local high school, when the substitute mailman delivered a package that wouldn't fit in the box, and when two Mormon women wanted to talk about religion.
I know your wife doesn't want to lose her hair...it's not an easy thing to deal with. But if and when it happens, well, they keep telling me it will grow back. I'm looking forward to next summer with hair. Here's hoping that your wife beats the odds, though, and keeps her hair throughout.
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What were their reactions when you answered the door???
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Just wanted you know that I had my first appointment with the radiation oncologist today and he was so positive about Herceptin that I had to share this. He noted that I am ER-PR- but HER2+ and receive Herceptin. And he addressed it by saying that he thinks Herceptin is really a fantastic drug that does an infinite amount of good. They are even doing some trials with Herceptin in HER2- women when they are undergoing radiation. He described cases where women with mets on diagnosis ended up in NED status and he credits the Herceptin more than the chemo. He said he knows people count down chemo tx but thinks we shouldn't count down the Herceptin. Instead he suggests we should say "Oh, WOW, I get to have Herceptin number 8 today", and on and on. I just thought that was such positive stuff for us here to keep in mind. It's coming from an RO, not an MO, and that means something, too. He wasn't gushing over what he does, but what another doc administers.
And Omaz...each of the poor folks at my door were a bit taken aback by a bald woman staring out, but they didn't react much...just wide eyes. But today my lawn guy rode past on the mower as I was on the porch without hair. I know he's heard that I had cancer but he hasn't seen me. And today he did a true double-take and then waived. Thought he was going to crash into the palm tree!
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Bon - Thanks for sharing about herceptin. And, LOL about the lawn guy - so funny!
I had ordered a wig that was pretty cheap and when it came it was OK. I went to get it trimmed at the salon at the cancer center today and they had a GREAT wig sitting there in front of the chair. A woman came to help me after my cheap wig was trimmed and she put that one on my head and it looked great! She then went and got the ring of colors and picked out my color for me. Best of all it really was't too expensive, $200. I am so excited because once it comes in and gets trimmed it will be styled like my hair and I will feel comfortable going out in it! yay!!
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Bon~
I have 4 Herceptin only treatments left and I have been feeling soooo tired and I thought it was something with the Herceptin. They did a blood test and I am severely anemic. That would make more sense. In that case, I do not think I have any SE's.
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Ang7...Thanks for sharing your experience on Herceptin. After what the radiation oncologist said about Herceptin today, I'm quite looking forward to my tx on the 15th.
Glad they found your anemia and got you treated. Hope you are feeling better now. Bon
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Bon - No SE from Herceptin other than occasionally a runny nose. I get Benadryl with each H tx and that makes me really sleepy so now I just plan on a nap that afternoon. Kind of a treat, really, to justify an afternoon nap :-) Next Wed will be my #12. Another SE, if you can call it that, is that H slows down the growth of your new hair. I am 23 wks past last Tx and only have 1 1/2" growth.
When I was first dx, my onc called Herceptin a "miracle drug" for women with Her2+. She said when it was first available, supply was scarce and patients who were lucky enough to receive it were chosen by a lottery.
SunDiego - My hair was all but gone by day 16. So much had come out in the shower that I couldn't comb through what was left so just shaved it all at that point. Was ready with a couple wigs - one I really liked until I got too close to the oven and the bangs began to look a lot like straw. I'm considering getting a replacement of that same one (name is Heidi) just because my hair is coming back soooooo slowly due to the Herceptin. At the rate it is growing, It will be maybe March before I will feel comfortable without a wig in public.
Ang7 - After my 4th tx, my blood count were so low that I truly had trouble getting out of bed. It was an effort to walk across the room. VMarie, you are so fortunate that you could exercise throughout. I normally am so physically active that to have trouble walking across the room was horrible. The only thing that saved my sanity was knowing that it was only temporary and would get better. Ang7, your energy will return faster than you think. My lowest point was in late March and today I was climbing around on scaffolding, painting my house (and loving every minute of it!).
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mntdawn, my onc thinks it is the fat necrosis breaking down and coming out. A necrosis is dead skin and in my case dead fat left in there and the radiation did something to it. I guess if we had never biopsied it it would never have done this. He told me to just let it drain out so I am. It is disgusting but yesterday I was flipping through channels and there was a man who had boils all over his head and he had them other places. It is a rare condition and from looking at his problems I have none to complain about. they said his skin instead of flaking off like normal it would stick in the pore and cause infection. Like a pimple as my onc said so now I think I understand what the onc was telling me. He said my white count was not up because it was not in my blood but under the skin. Radiated skin is slow to heal but mine healed really fast after the biopsy and I figured I had beat the odds but it flared up and blew out. I guess the pus had been there from April until June and now again it flared up. Seems like hot shower or hot packs make it come out and my onc said to keep doing that until it was all out. since I had radiation they would have to cut away a lot of my flesh to get to good non radiated flesh so I don't want that. I wish I had never had radiation but I did so I will deal with it I guess. I also just have to deal with my low red blood count. I am lucky though because I have my life and I now have hair and a lot of people tell me how good I look now. I was very pale and lost a lot of weight which I am trying to keep off and eat healthy. Hard to do! I am Lucky after all. Poor man on TV, he is doing good but nothing can be done for him and he has to have plastic surgery to make him look normal and I can't imgine the pain he goes through. I am sorry I was complaining and maybe God showed me this so I would quit feeling sorry for myself.
As for hair loss, I think everyone is so different. I did not lose mine until after 3rd tx and it was sore so I buzzed it off. herceptin made me feel ache and tired for a day but I could work. I also had a bad taste for a few days. runny nose some too. I sure hope that means it worked.
I wish everyone the best. We are all different and our onc are different so they treat different. I guess just try to be a patient patient. I am not! I need to be.
Carolyn
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Gramma23 - I like that 'patient patient'! I need to work on that too.0
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Omaz, thanks. My doc years ago told me I was the most impatient patient. he said I thought I should get a shot or pill and get well. I guess I am like that but with cancer I think I have gotten a little better but I still want it to be like on Star Wars or what ever where they put you in a tube or touch you with a instrument and you are diagnosed and made well at the same time. I have not watched this stuff since my children were young and I have forgotten what all it was about but I liked that idea. wish it was true!
Hope you have a great day.
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Gramma23...Carolyn, are you possibly related to my Mom? She, too, is a most impatient patient and drives everyone around her a little batty with her disdain for meds that take longer than an hour to make her totally better. Yep, instantaneous dx and tx and cure would be fantastic. Hope someday it's true. We can always dream, right?
I'm so sorry to hear about your fat necrosis problem. As I am about to embark on the rads journey, I now do so with trepidation. It would be nice is just one thing along this long cancer trail didn't cause some other horrible thing to happen.
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Bon, I have had one treatment of Herceptin and I also had a runny nose and felt tired, but then I blamed it all on Hurricane Hermaine (or Lisa) that came thru here! Also got my final drain out and boy am I glad. That last drain was becoming a pain in more ways than one.
Gamma23, I am pushy too! The sad part is all the medical people in this area know me as a fellow medical provider and so they just laugh at me, but so far they have been good cooperative medical providers! LOL! This disease makes us all impatient, so it is good to see the posts and know we aren't alone. I am so sorry about the fat necrosis and I hope it resolves soon. It is bad enough we lose our hair and body parts, but to keep losing body tissue sucks. Hang in there, we are thinking of you.
Peace and laughter, and bald heads!!!!!
Cheryl
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Thanks for the posts Bon and CherylQ, it is hard to keep going with this problem but we do have to keep fighting. Cheryl we have about the same diag. I did not go for a mamo when I found mine because #1 I had lumps all my adult life(but I knew this was different) #2 I did not want to mess up the sons and grandsons graduations. #3 I was scared! I know this was stupid and if I had gone right when I found it I may have not had lymph nodes involved. I was fine in Nov of 2007 and at the end of Dec. the lump was there and huge. It felt different too. Like I had a small orange in there but very close to the top of the skin. Most had been deeper in my breast. If I can do anything I will preach self exam and going for tests. Even for men. they get cancer too and some get breast cancer. I did not watch the show about cancer last night but I hope it really causes people to think about it and maybe it can save lives.
A funny thing happened yesterday. I put a bandage in my bra so it would catch any leakage from the open wound and I have not see it since. I wonder where I lost it. I did not see it at work and it is not here at home. I just hope it did not get sucked into the holes in my breast! :{ I don't think it could though. I just feel sorry for anyone who finds that nasty thing. I don't think it leaked a lot though because it was not on my blouse. I think I could write a book about the crazy things I have done in my life or things that have happened to me.
hang in there girls and hopefully you will be well and strong again.
Carolyn
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I was just reading through several days of posts. I had my last Herceptin in June--never had any problems with it. I know this has been mentioned before in this thread, but some of the newer women may have missed it. There is a movie called "Living Proof" starring Harry Connick, Jr. that's about the doctor responsible for the development of Herceptin. It came out a couple years ago and I think was made for TV--Lifetime channel or something like it. It's very good and makes you realize what a huge difference the drug has made. It gets rerun occassionally and I think you can also get it on Amazon.
Sorry you've been having so many problems Gramma. Hope the leakage stops soon!
Take care, everyone.
Becky
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Thanks Engtchr. It has stopped leaking for now but it always does that for a while and then starts again. I do hope the necrosis will finally go away. I hate having that lump but at least I do know it is not cancer because of the biopsy. I guess we all worry about that at times. I do have a lump up a ways from the biopsy spot but the onc thinks it is nothing which is what he said about the Necrosis so he is probably right. They said on the mammogram it showed up as a shadow and was probably a lymph node that was swollen from the infection. I can live with that because I do not want them cutting on my skin that has been radiated again.
Carolyn
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Becky - After you completed the Herceptin, did you notice your hair growing faster? I am getting really frustrated with the hair situation and was just wondering what you experienced. And thanks for the info on the movie "Living Proof" - did not know of it but plan on getting it.
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LilyLou, my hair did grow better after Herceptin. docs will tell you no but I know my hair did grow faster but then it was summer and they say your hair grows better in hot humid weather. Seems like once it gets started it grows better. My hair is still thinner than it used to be but it is okay because I really had thick hair. anyway I am so far cancer free. I have to be happy about that even if I had no hair. My husbands blood pressure med is making his hair grow and get thicker. If you take blood pressure med it may help you too. the only thing is the hair on his arms is growing too.
I hope you will start seeing more hair soon.
Carolyn
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Crap. My ejection fraction dropped, so I'm off herceptin and on blood pressure meds for 6 weeks.
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mtndawn - what was it and what did it go to? Was it echo or muga? How long have you been on herceptin. I ask because I just had my second round and will be continuing until next august and worry about this.0
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Omaz,
They said it "wasn't great" to start with, but I don't know the exact number. It dropped to 45. I have done 7 rounds of herceptin. The muga showed it first, so we did a follow-up echo, which showed the same thing.
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Thanks mtndawn - Congratulations for finishing the 6 rounds of TCH - that is wonderful!!!!
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My SEs from Herceptin are hard to tell, but I think pretty much nothing. I have a lot of joint and muscle/tendon pain, but that appears to be residual from chemo, plus being 52 and being as active as I can manage. As for hair, mine probably would have held on longer than I expected, but I shaved it once it started coming out, because it made me so anxious. I never completely lost my brows and lashes-- kept about 4-7 long lashes on each eye! Now I have stubby new growth and a few stray long ones. Brows came back fastest.
I also got through chemo better than I expected. Yes, plenty of misery, but the memories do fade... and like VMarie, I stayed as active as I could, and it helped. And I made sure I rested when I needed to. Same with radiation-- I followed the doc's orders and got extra sleep the last week of rads, and I took the week after rads off and had a little vacation with lots of sleep. I was exhausted at first and slept a lot, but a week later, after all that rest, I was back to work and pretty much my old energetic self.
As for the Herceptin thing, I've met a couple of women who were early recipients of the drug, and they are here to say, 7-8 years later and disease-free, that it is wonderful.
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mtndawn, My EF dropped some during Herceptin but not enough to have to stop. My cardio told me anything between 50 and 70 is the place to be. It did drop a lot the 5 days I was on the trial drug Neuratinib though. Like any drug everyone is different. Hopefully yours will rebound fast and you can finish Herceptin. If you do start again see if they will drip the med slower than they were. I started having side effects while taking it and so instead of 30 minutes they dripped it for 1 hour. I did not like staying that long but it did help plus Benadryal. I am so glad I got Herceptin and hope you can too. How many have you had? I know they told me that if you could get some it was better than none.
Carolyn
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Hi Carolyn,
I had 7 cycles of herceptin and have a complete clinical response to chemo. I have surgery tomorrow, so then we'll know what my pathologic response is. The last couple of times, my drip was quicker, but they were doing the slow ones during chemo. I wonder if that made any difference. I also wonder if weekly tx would be more beneficial. Oh well, we'll see how it goes over the next few weeks. I saw one study that found the following:
A 52-week course of trastuzumab is unlikely to offer clinically significant benefit over a short course of trastuzumab administered concomitantly with optimum taxane-based schedules and response-limited anthracycline cycles, Dr. Mehta said.
I know that one study (not even a stage II trial) may not have anything to do with my case, but it's good to see someone found great benefit from a shorter course. This study was really about pcr, and its excellent prognosis for people who are her2+, er and pr -.
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