TRIPLE POSITIVE GROUP
Comments
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I see my PS once a year but he isn't checking for cancer. He is just checking to see if the foobs are OK (haven't moved etc) and if my tatts need touch ups I guess. I haven't seen him since last summer, about 6 months after that tatts were done.
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Marlene, while I was on taxol weekly, the 30 minute herceptin was no problem. It was when I went to herceptin alone, every three weeks that I had the issues. I felt awful. Like I had the flu. I actually felt worse than when I was on the chemo mixture.
I told the onc after the second one how crummy I felt and asked about slowing it down. He said sure. Also said I could continue weekly or go to every two weeks if I wanted. The 90 minutes helped a lot. I was over going in weekly by that point in time. I didn't really have heart issues...a few palpitations during infusion but that was it. I really wanted to feel like I didn't have a bad case of flu, achy and just crummy and the 90 minutes accomplished that.
Pbrain, while my hair did grow back after taxol (I didn't really lose it all until I was done), it didn't really go crazy until a couple months after herceptin ended. And bangs take FOREVER!
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Ang: I have no idea why but my onc is still seeing me every three months and bloodwork too. I finished chemo 6/8/11 and Herceptin 11/2011 (my 10th and final). I need to ask her next month how long I continue with the 3-month visits. I don't know of anyone who goes every 3 months this far out. My cardiologist is doing echos every 6 months due to the potential for EF problems after Herceptin (even though mine is back to 65).
Ladies: I have a friend (triple negative) who finished chemo late January and no hair yet. Since I did the caps, I don't know when you start seeing hair regrowth?
Should be soon right?0 -
arlene - here is a page that has some hair pics, but I think mine came in much more slowly:
http://community.breastcancer.org/forum/69/topic/707348?page=606#post_3405378
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Thanks SpecialK. She's getting worried because of the AC (red devil, I think they call it).
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I have not heard much about permanent alopecia from Adriamycin. Adriamycin is often given with Cytoxan, which is more possibly the culprit if her hair does not make a comeback. We obsess about losing the hair, then once chemo is done we obsess about the hair coming back - I hope she has no problems, it is hard to be patient!
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Yes, she had the Cytoxan with the Adriamycin and then did Taxol. I noticed a few days ago that her eye lashes seem to be coming back so hopeful. It is tough to be patient.
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arlene - the hardest thing for me too was that when I looked in the mirror I was concentrating on the front of my hair right above the forehead. Too hard to see the back and sides of your head while looking in the mirror. For most of us that very front part is the last to grow in! My DH and DD kept telling me that I really did have hair but it was all inthe places I couldn't see in the mirror! A number of the ladies in my chemo group (Feb '11) all had a lot more hair than I did earlier on, and they had full coverage - mine took a while but it is good now - nobody would ever know I was bald at one point!
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Thanks SpecialK. I'll convey to her and hope it makes her feel better.
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Thank you Ladies on the info of every 3 mo exam and blood work. I am off to meet with doc to take out my port hopefully before April. I am REALLY looking for spring and summer now want to be as fun and My new normal Life Be better than it has been the past 15 mo.
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ArleneA I know a few people with chemo induced alopecia. They all had Taxotere not Taxol. None of them had the red devil. I do believe they both had Cytoxin. From what one of my friends research told her is that is from Taxotere and the more rounds and combinations with the Taxotere the higher the risk if for Chemo induced alopecia.
Ang I do believe there are lots of people who see their onc every 3 months for the first 5 years in my area. That just not the way my treatment center does it. Also many do get blood tests. But like I said my onc feels tumor markers are unreliable. Remember I also have my gyno giving me a physical exam on the boobie prizes too.
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Thanks Lago!
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ArleneA,
Just wanted to say I had the AC tx as well as Carbo and Abraxane so I was bald twice..but after the AC it did take a few months for my har to come back it has grown slowly even at 17 months out ..I have short hair but it is growing I also lost my eyebrows and eyelashes both times after tx was done...tell your friend to be patient ..I wish her luck...0 -
More good news in cancer treatment.....
http://www.doctortipster.com/13153-researchers-made-a-breakthrough-in-cancer-treatment.html?utm_source=twitterfeed&utm_medium=twitter0 -
Interesting article on radiation heart risk...cardio toxicity.....the risk is apparently modest. And there is a new medical specialty called cardio oncology.
http://www.nytimes.com/2013/03/14/health/radiation-modestly-raises-womens-heart-risks-study-says.html?hp&_r=1&0 -
Here we go...one of the first cardio oncology teams in the country...
http://www.brighamandwomens.org/Departments_and_Services/medicine/services/cvcenter/cardiooncology/default.aspx0 -
Finally home from my last TC treatment! No reactions this time, but my MO did reduce my carbo again, this time by 25% and reduced the taxotere by 25% also. I hope that means that my SE's will be reduced by 25% too. One can hope
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Bren, Congrats on being done with the nasty stuff!!!
Ashla, Thanks for posting all the article links. You are a great resource! Btw, I grew up in Rockland Cty, but now live in Bergen Cty, so we are sort of neighbors, although I might have read that you spend some of your time in FL!
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Great articles ashla. Thanks for posting them.
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bren - yay!!!
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I've been reading a lot but don't post much. I'm wondering what determines one's treatment frequency? The MO I met with last week is suggesting 6 treatments of Taxotere, Carboplatin, & Herceptin every three weeks then continuing the Herceptin for a total of a year. I see that some people go weekly, some biweekly. Can anyone shed some light?
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And has anyone heard of having Herceptin alone without anything else?
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Hi Speedy and Welcome: I think (not positive) that the biggest portion of us Triple Ps were given TCH (Taxotere, Carboplatin and Herceptin) for 6 txs (I only had 4) and continuing the Herceptin every 3 weeks until 18 Herceptins have been completed (I only finished 10 before they stopped my Herceptin).
I've never heard of just Herceptin and no other treatment but there are a lot of really smart ladies here who will chime in.
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Hooray Bren.
Ashla: I can't believe there are not more cardio/onco teams. I asked my onco why cardiologists aren't knowledgeable about Herceptin and was told, they aren't oncologists....not a good response.
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Speedy, I was prescribed your exact treatment by my MO (who is tops in his field) and I couldn't tolerate it. I ended up in the hospital with neutropenic fever and was there for 5 days. So he dialed me back to weekly taxol and herceptin for 12 weeks, every week. I think what is planned for you is pretty much the accepted practice for us triple positive people. However, I know another common approach is 4 weeks of adriamycin and carboplatin, then 12 weeks of taxol, all with herceptin.
It never hurts to get a second opinion, but I think a lot of the decision making is based on concerns of the patient and cancer stage. I told my MO I was not comfortable with the adriamycin because heart failure runs in my family, and it can pose damage to the heart muscle in some people.
I will say I see a lot of women on these board who do just fine with the strategy your MO has planned, so don't take my experience as a given. It seems chemo tolerance is pretty individual.
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Ashla, thanks once again for posting interesting articles.
Bren58, a HUGE congrats on finishing this nasty part of your treatment regimen. Hope you are feeling okay.
I had the worst night yet since taking Tamoxifen (one month anniversary is tomorrow--
). Insomnia issues are becoming more common, and that is TOTALLY crappy seeing as I have always been able to fall asleep and stay soundly asleep. Just another SE from this whole treatment regimen. Anyone else have sleeping issues when first taking Tamoxifen or another SERM?0 -
Gratitude: I don't what causes my insomnia, it began with diagnosis. I'm almost 2 years into Arimidex and still have too many sleepless nights. Who knows what causes it but I will tell you it is MUCH better than at the beginning so I'm hoping as time goes on your sleep pattern will return to normal.
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Bren congratulation on finishing.
Speedy I did have all mine weekly, and finished up with herceptin for a few months weekly by itself so that's how it was done for me. I do know I had 1 year of herceptin like everyone but weekly. I think I explained that right.?????
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Speedy I too did 6 TCH with a full year of H. Herceptin works better with chemo that's why you don't hear it given alone too often. Granted I'm sure there are some that might not be able to do chemo due to other medical issues. The other common cocktails I've seen include Adrimycin with I think carboplatin or cytoxin followed by either taxol or taxotere. Adrimycin can have cardio toxicity issues as does Herceptin so they don't give them at the same time because that increases the risk.
It seems most people do TCH every 3 weeks. It's actually easier on the patient as far as traveling. It would have been are a real PITA to go every week. But in some cases they do give it weekly or every 2 weeks depending on what you get. You are getting the same amount over all. The weekly is a smaller dose.
Bren Whooo Hooo Chemo DONE!
Taxol seems to have a bit more neuropathy issues than Taxotore but Taxotere also has them… as we know from my left heel that can predict weather.0 -
Speedy, It wouldn't hurt to get a second opinion. Your diagnosis looks very similar to mine (although I'm PR-) and my oncologist recommended 12 weekly taxol and Herceptin. His alternate recommendation was 4 tri-weekly TC plus Herceptin, taxotere and cytoxan rather than carboplatin (I don't know the difference between the two C's). You might ask about having 4 treatments instead of 6 since you're early stage. I'm sure age enters into the mix when determining aggressiveness of chemo treatment.
I asked my oncologist about getting Herceptin alone without any chemo. He won't do it, but he said another oncologist in his large group does. I don't think it's very common at all. After learning a lot more (mostly from reading these boards) I'm glad I didn't push for H alone or change oncologists.0
