Taxotere, Carboplatin and Herceptin
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kauaicharm - Sorry you had to join us, but you have come to the right place. I had the genetic testing done and am now fighting with the insurance com apny and the testing center. Even if I end up paying the $3000, it will be worth it to know that my neices are safe. As for TCH, Herceptin (the "H" part) can cause heart muscle damage. Just an FYI. You will need regular MUGA scans to monitor your heart function.
If you have any questions, please don't hesitate to ask us. "We been there and done all that"
Lisa
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Sorry guys, but I need to complian. It is 11pm in my time zone. I am in bed with my trusty laptop, I am burning up! The AC is set on 65 and I have sweat running down my face and body.. This is just miserable. I started Effexor about a week ago and it has really helped. It was worse. I really hate tamoxifen.
Lisa
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Lisa, while Herceptin may decrease heart function temporarily, the heart normally recovers once Herceptin is stopped. That's why I chose TCH. The damage from Adriamycin isn't as likely to go away.0
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ccbaby,
I had the very same reaction to Taxotere TODAY during my second tx! They stopped the drip, put steroids and benadryl and then the doc came in. He had them add more benadryl and more steroids and wait for an hour and then drip more slowly and I did fine! I hope that works for tx 3, 4, 5, and 6 because if not, he said we would have to change to a more complex longer tx schedule.
Wish me luck!
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ccbaby,
I had the very same reaction to Taxotere TODAY during my second tx! They stopped the drip, put steroids and benadryl and then the doc came in. He had them add more benadryl and more steroids and wait for an hour and then drip more slowly and I did fine! I hope that works for tx 3, 4, 5, and 6 because if not, he said we would have to change to a more complex longer tx schedule.
Wish me luck!
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I am a smart person but all these chemo options have me asking me if I'm nuts?
NO: 1 - why would I chose to be in a study. I'm a really nice person and I'd help anyone out but my life is at stake here??
NO 2: Why would my insurance not pay for genetic testing for me to see if my sister and daugther are at risk to develop breast or ovarian cancer?
NO 3: Can you drink Chardonnay on chemo cause I need a sip NOW!!!
NO 4:; Do they assume my ovaries need to be removed and what do they base that on? I'd ask the doctor but I find we groups have a better and more easily understood answer.
Thank you all for your commetns. I love to laught, keep em coming!
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kauaicharm:The reason some doctors remove ovaries is because you can not detect cancer of the ovaries as easy as in the breast. If you are ER+/PR+ then they think you might get it in the ovaries. I don't know much more about it than that. I had a complete hysterectomy when I was 29 and never went through menopause. I have never had hot flashes so I am sympathetic with those that do but really have no experience. I am not taking anything after I finish Herceptin next month. Well as far as I know that is. My onc seems to hit me with one thing at a time. I had no chose of what I would take they just told me and I was not asked if I wanted a lumpectomy or mastectomy I was told what he would do. Now that I am almost finished, I am coming to. I wish I had the chose. My breast I had the lumpectomy is sore all the time and the bottom part is so hard and it is bigger than the other one probably because of swelling but after a year I think it should be better but when I had the mammogram it got bad again. I don't know though how a mastectomy would have been so I guess I will live with the hand that was dealt me and go on with Life. I choose Life and will deal with the rest. I wish you all the best and the girls here are great help.
I am sorry so many are dealing with Tamoxifen. This too will pass but I know 5 years is a long time when you are looking at it from the first year. I have lived with fibromyalgia since before 1991 and I am so totally miserable but I keep telling myself my family needs me and I put on a happy face as best I can. I do get tired of docs using it as a catch all problem when I feel like they need to look deeper to see what might not be fibromyalgia or arthritis. I feel like not telling them when I see a doc. I wish now I had not told the onc I had that. would he have treated my cancer different? He was still puzzled by my difference to the meds than most had. I wonder?
I feel so bad when we get new ones here but then I am so happy for them when they get finished and want to move on with life. This is a journey for sure and for some harder than for others. Everyone is different with different symptoms but we have so many here I am sure someone will have had the same problems. If you read back through the beginning you will really see so many different viewpoints. I always wonder how those who started this are doing and I hope since they have not checked in here it means they are great and it is all behind them.
Have a good day everyone.
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lmt041409.... You will probably have to remind the nurses what happened to you this time the next time you go in again because they are so busy in between that they will forget. And make sure they watch you close. Hopefully it won't happen again. It is very scary. It is better to have more pre-meds and slower drip and be there longer than to have another reaction.0
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kauaicharm - RE: Chardonnay - Much to my dismay, I could not stand the smell, much less the taste, of my dear friend Chardonnay during chemo. It was the darndest thing. But alas, 3 weeks after my last TCH, Chardonnay and I were reunited and it felt so good......
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Kauaicharm: No 1: It is a personal thing... No 2. The only place in the world that does this test is in New York and the company has a patient on the test. They set the price at $3,000.00 and beings they have the patient if you want the test you pay their price. I'm sure insurance companies maybe would like to save lives they are a business and cannot. I was fortunate enough to have gotten the test, but still had to show I was at a high risk having so much cancer in my family, even my brother had breast cancer. I did not have the gene. No 3. Can't help you on this one wine gives me a headache. No 4. Don't know how old you are, but if your done with babies why not have them taken out? When I was ask I said, "why would I leave them in to lay around and get cancer?" "take those puppies, uterus, and cervix out". Glad I did. And last but least welcome to Camp Chemo and any question no matter how big or small ask away. Someone will have the answer.
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kauai,what study are you considering? I would do a study if it was a good fit for me. Why? Because I have benefited from the women who were willing to take part in the Herceptin studies so I know how important that can be. And the women who got Herceptin throught those studies benefited to so a second reason can be the opportunity to get a treatment that otherwise wouldn't be available.
The hard thing can be deciding whether a study is a good fit. I was offered a study at the begining of chemo. It was one that might add Avastin to TCH chemo. My onc and I agreed that that would not be right for me. Avastin has a risk of stroke and with a tumor under 1 cm, the possible benefit of Avastin would be too small to be worth that risk.
On the other hand, at the end of chemo, I was offered a bisphosponate clinical trial and did decide to participate because the risks of it seemed low so it was worth trying for the benefit of a possible 30% or so reduction in my already small recurrence risk. I'm now considering whether to stay on the study because my creatinine level which was elevated at the end of chemo has not come down.
I would have liked to participate in a study doing shorter radiation but my facility wasn't participating in one.
On your question 2, I don't know why in your case. Usually they only pay when there is a history of breast cancer or other cancers related to the BCRA gene mutations such as prostate. It usually takes a certain number or cancers that occur at a younger age (like under 50). I did the genetic counseling with my insurance company to see if I had a background that justified the test. Because I didn't have any relatives with breast, ovarian or uterine cancer and got mine after 50, they decided I didn't. I'm a little concerned about that because I'm not sure the information I have on family history is accurate and my family is relatively small. Also I'm of Ashkenazic Jewish descent where the gene mutations are more likely than in the general population.
3. Chemo can be hard on your liver and so can alcohol so if you drink on chemo, you shouldn't drink much. I did occasionally have a drink during week 3 of my chemo cycles but not very often. I found that wine rarely tasted good during chemo. Also, you need to consider what other drugs you are taking - I never drank anything when I was using Ativan for nausea.
4. I think that there are two reasons that they might consider removing your ovaries - if you have the BCRA gene mutations, then your risk of ovarian cancer is increased and it is difficult to detect early, The other is that for hormone positive cancers some people have the ovaries removed or chemically surpressed to reduce their estrogens and to use AI rather than Tamoxifen. But being hormone negative I don't know much about that.
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Welcome, kauaicharm. I'm fairly new, too. Had my first TCH June 17th. NO. 3--my onc said no alcohol day before, day of and day after each chemo. I found I had no desire for wine at all until about day 8 and suddenly it appealed again. I'll be interested to see how it is with tx 2.
Everyone have a great day and feel good!
Becky
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Becky, Good point. I wasn't thinking about it because I never even thought about drinking alcohol right around a treatment. I didn't get benadryl with my chemo treatments but many do and the drug information for benadryl says don't take it with alcohol. Zophran and decadron which many take around that time says to avoid or limit alcohol while taking them. Pretty much any drug that can make you drowsy or depressed can have that side effect intensified by alcohol. The drug info said that the issue with decadron and alcohol was that it increased the risk of stomach irritation or damage.0
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I went for my after-chemo Muga test today. I went from 75 before chemo to only 57 today, 5 mos later. Is that bad? What are your scores?
The technician said it was because it was a different machine than last time and the one upstairs (where I got my first Muga) tends to score higher. She said anything over 50 is normal.
I don't know. I'm worried. I have 7 more months of Herceptin to go.
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I am very interested in the discussion regarding ovarie removal. I asked my doc about it last week in the context of not having to take tamoxifen. He said if the ovaries were removed he would switch me to arimidex. when I asked, I was just trying to avoid another pil. I was not thinking about the long term and possible cancer in the ovaries which I understand is very hard to detect. I need to think about this more.......
If it ain't one flippin' thing it is another......
Lisa
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Linda my score has been 56 at the beginning, 46 and then 57.8 the last time. I get echo's because I am a sissy
Don't worry if the tech. knows this I am sure the doctor's who read the Muga also know this. You are still well above 50 and you got TCH which if it does impair any heart function it normally returns to normal. Hang in there sweetie and prepare for your H only drip
Bluedasher~ Have you had any SE with Clodronate ?? I am on that arm also and day 1 I got sick after eating breakfast. I have not been sick the entire time during chemo and I take these pills and 1:45 min. later yacking....YUCK!! I sure hope you are having any easy time with them. They are horse pills but just another thing to try and prevent the beast.
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Thanks Bold,
I have issues with my dad's side of my family since they were all men and I'm not sure cause of death on two of them.
My mom's side, 10 in all, she's the only one living, had 5 girls and 5 boys. Some died of lung cancer but they smoked and my aunt died of lung cancer in her 70s. Doesn't sound like I have the data to get this test paid for..
Myriad offers a payment plan but since i have no income right now that is not very attractive. I'm worried about my daughter, You must have better insurance that I do!!
Thanks for the support, I'l be on this website dailty for a while. Start treatment mid July.
charm
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Thanks so much Jaimieh, for taking the time to write! As usual you've made me feel better!
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chaarm, any chance your daughter could get the test paid for by insurance because she has a mother with breast cancer and needs to find out if her risk has increased?
Becky
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Had my second TCH yesterday. My CBC was so good that my onc increased my Carbo. Guess the first chemo wasn't enough to make me sick (nausea and diarrhea) that they had to give me more! By the time I got home I was nauseous and running for the bathroom. That didn't happen the first time. When I get my 3 week combo, they start me with H, then add a nausea medicine (can't remember the name), Decadron and Benedryl. Then I have the Carbo followed by the Taxotere. Today I was really nauseous and had indigestion. Had to take Compazine during the day and Zantac. Both really helped. Tonight I am just drained after working all day. I've been trying to figure out what MUGA is. Could y'all explain to me, I don't know if I've had one or not.
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jeffine, the MUGA is a nuclear test to see what the output of your heart is and I would have thought they did this before you started chemo. It is normal between 75 & 50 so it is a big range and my cardiologist said if it was higher than 75 then your heart would be pushing the blood out at too high a pressure like a water hose under too much pressure. It would explode or rip away from your heart. She also said that each machine will test different so don't be worried about the difference unless your doc says something. I had to have a complete heart workup including stress test. Not too bad. I have good scores but lower than when I started so July is my last Herceptin and I expect it to come back to where it was after a while.
I had a lot of indigestion too and nausea was worse about day 3 after TCH but I had some times it was bad for 2 weeks but you need to get meds if it is and don't fool around like I did and get dehydrated. I was not real smart and my husband was not really paying attention because he did not know what to expect either. Read all you can on everything and let your loved ones know what they can expect because they may have to help you remember to take your meds. I hope you have an easy time of it. Just keep on drinking the liquids (water, juice anything you can without caffeine)
Good luck everyone with your se
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So I am about to start Taxotere, cytoxan and Herceptin. I hear that using ice gloves helps with the finger and toe issues. Also, has anyone used ice caps? My doc poo poos the alternative meds, but I also hear that accupuncutre and Chineese herbs can help. This is in addition to what you talked about with steroids and ani nausea drugs.
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Good morning ladies I finished my Ac on June 9th... now I start Taxotere this coming Tuesday... I'm gonna ask if there are any suggestions? Sopris... I guess you and I will go through the Taxotere together, heh? I had such a hard time with AC 4 and just feeling better... dread starting the Taxotere... eek!0
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Sopris: I have read those things too, but what I would suggest to see if you get any symptoms first. I never really had any problems with toes or fingers so if I used the alternatives I wouldn't have known I didn't but just thought the treatment kept it away. Biggest thing for you and Arnie would be to make sure you drink lots of water to flush out your kidneys, and have a good BM to clean out your liver of the poison. Eat light meals and stay away from greasy, spicy or sweet and plan to get plenty of rest. This is universal with all the camp chermo gals. I'm sure others can team in with more good advise. If you get symptoms then of course use anything you think might work.
Lisa: You didn't tell us Emily was ok now....
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Thanks cupcake....really appreciated the advise...good thing I like water! lol
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Arnie and Sopris - I have just had my 4th TCH (of 6) and here is what I have figured out works for me. Zantac the night BEFORE chemo and then with dinner daily for the week after. Stay AHEAD of the heartburn - it hurts! I take l-glutamine to help with digestion (an amino acid) but it also is helpful to prevent neuropathy - the fingers/toes problem you refer to. So you might want to take that. I take probiotics and digestive enzymes and aloe juice daily the week after chemo. I also take DIM and melatonin daily as well as Vitamin D. No other vitamins until chemo is over. I have no nausea at all, just the heartburn and some stomach pain, no interest in food for a few days after.
I take a lot of stuff and see an alternative doc who helps strategize with me. But if I was only to do 2 things, i would take the probiotics and the digestive enzymes -both about 15 min prior to meals. They help restore the delicate cells lining your digestive tract that the chemo destroys. And it really helps your body start digesting normally again. Oh -and of course - LOTS of water to stay hydrated and for cleansing.
I hope all goes smoothly for you. This sure isn't fun and isn't something I would wish on my worst enemy, but it is bearable. I am so thrilled I only have 2 more to go!!!
Good luck
Amy
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gramma23- I had an echo before I started the chemo along with bone scan and liver CT. Onc said everything looked good. I'm taking the TCH instead of ACT as my mom contracted CHF from the A. He said he would be keeping a close check on my heart because of mom. She's had breast cancer twice. The first time in 1994 which was hormone positive - this was when she took AMF(?) which gave her the CHF. The second time in 2002 which is exactly what I have now, only I had more nodes positive. She is doing great, she's 65 now and goes with me on my chemo days. She's where I get my positive attitude and the ability to treat my cancer with humor. It helps to have her as a great example of how you can survive a devastating condition twice and still come through with a positive attitude. She goes with us when we take our 10 year old son to Disney World and her favorite ride is the Tower of Terror! I hope this will help some of you look forward to after the chemo. She said it was tough, she would do it again if she had to, but it will be over and your life will go on.0
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Jeffrine: where is Baker, Fl? I am in Tampa, but have never heard of it.
Arnie and Sopris: be sure to take your meds as prescribe, even if you're not feeling sick. I would even set my alarm for 4AM to make sure I stayed ahead of the sickness. Good luck. You can do this!
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Amy and Magnola... thank you so much for this information...just printed it out! I'm so nervous about starting the Taxotere...eek! I know it's doable because so many of you brave women before me have done it.... guess I'm just a bit tired of this chemo train... I have heard of the Claritan but forgot to ask onocologist about it last time I was there... and the Zantac...so glad you mentioned that. Where do you get the probiotics and digestive enzymes? Health food stores???
Thanks again ladies... really do appreciate the suggestions. I will be a regular on this thread now so that I can glean your wisdom on these matters.
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Funny you should ask..my doctor does not think I qualify for genetic testing but is referring me to a genetic screening person for final determination.
I'm going to ask my family doctor about requesting the test for my daughter but I doubt my insurance will agree to pay. I've now done enough research on family members to think I should now qualify. I'll keep you posted. Thanks for your idea, we think alike...
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