Taxotere, Carboplatin and Herceptin
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Wow, Lisa--hair and no more port--life is good! Happy for you!
Becky
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Alaina...The bracelet is beautiful! That is so nice that your friend made it in honor of you!0
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Alain the braclet is so pretty I emailed your friend my birthday is coming up next month and its the first time I have seen one I liked its not like the pink ones everyone has I dont care for those but the one she made you is so beautiful and you are so lucky that she did this for you of course it would be great if it was never needed and no one ever got breast cancer but not shure when this will ever happen and to have this special frined in your life it makes it alot easier.
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That's the first bracelet I've seen that I really like! How exciting to have it named and made for you!
I've got a neutropenia question. For those of you that experienced it, did it happen once or repeatedly? Ten days after tx #5 I went to the ER with a fever and was admitted for three days with neutropenia. My last tx is coming up and I just have a bad feeling about it. I don't want to end up in the hospital again and I'm terrified that I'll end up with the flu - swine or otherwise. I feel like my body is telling me enough and I want to skip this last tx so bad. Any thoughts?
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Twinmom - Ask your doc. If he/she thinks you are at risk, they will let you know. You have come so far. One more to go!!!!!0
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Twinmom77, Talk to your doc about this but I know how you feel about not wanting to take it. I was the same way at #4 but I made it fine the rest of the time with of course the normal SE. I never had that but plenty of other problems. I know it is not fun ending up in the hospital and maybe getting flu. I went in the emergency because of chest pain in July and they kept me for 4 days doing tests. I will think twice about going next time. Of course it would probably end of being a heart attack if I had not gone.
Alaina, the bracelet is very pretty. You are lucky to have a friend do that for you. I do not wear any kind of jewelry not even a wedding ring. It hurts me to have things touch me. It is the fibromyalgia that causes this and I have had it for a very long time. I looked around on the web site too and I know my daughter would like some of it so I will pass on the site to her.
Congrats Lisa! I am so happy for you to have your port out. My hair was late getting any bangs too. I have a little now and I did get a trim to make the hair grow the way I wanted it to and I think it is growing a little now. It has been almost a year since the end of my last TC. Mine gets a little crazy at times because of humidity. I put conditioner on it so it won't go too crazy after I wash it. My hair had some natural curl before and I think it is just like it was just shorter. I have a scar across my forehead and I was glad to have the hair cover that a little.
enjoylife, a friend of mine who did not have cancer had very thin hair for as long as I knew her and it was like male pattern baldness. I saw her several months ago and I could not believe it was her. She had more hair. I did not ask her what happened because I was not even sure it was her for a while. I had wondered if she had the implants like some men do. I work at the same bank she does but I am not at the same facility so I don't feel I can ask her. She looked good though.
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Lisa: Congratulations on getting your port out! Happy day for you!! My doctor said that when I get my port out (next July) that he would be taking it out right in his office with just using a local shot for numbing the area. Ouch!!! Not looking forward to the procedure but can't wait to get this port out of my body! Lucky you!!
Alaina: What a wonderful gift to you made by your girlfriend! What an encouragement that must be to have such a thoughtful friend and people that are walking this road with you!!
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Lisa, congratulations - we're done!!!
Blessings, I had my port out with a local. The shot for the local stings a little but after that it was fine. No pain and pretty quick. The only problem I had was my usual allergic reaction to the adhesive on the bandage.
Twinmom, I had neutropenia the first time and I got a neutropenic fever (no infection, just a fever from very low white cells). I spent the night in the ER but didn't need to be admitted because I'd been started on Neupogen the day before and my white cells were starting to come back up. After that, I got Neupogen (3 doses) each chemo which kept my white cells high enough. I did get a cold just before Chemo 5 but it was just a normal cold - no fun on chemo but no major problems.
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After my first 2 chemos, my WBC bounced back high enough (although they were still in the low area.) THey always were high enough to get the next chemo treatment. Treatment #3 took a nose dive though. They went down to 2.0 so onc ordered 2 neupogen shots and a precautionary antibiotic. THe funny thing is after the 2 shots, my WBC shot up to 21.0!!! But then by the time chemo day came, they were back down to 3.9. So now my chemo protocol is going to be Friday chemo, and then Mon & Wed neupogen shots. They really aren't that bad. I had bone pain with only one of the shots. All the others have been side effect free, except maybe a little queasiness on the nights I take them. With 3 small kids (and snotty noses constantly) I am actually thankful I am getting these. At least I will know I have somewhat of a chance to fight off all the germs they bring home!
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Blue, isn't it a great feeling!!!!
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Weety911: I am always confused at how different doctors treat us each so differently. My WBC have always been below 2.0 after chemo and my doctor has never given me any shots but tells me to just make sure I am washing my hands and staying away from sick people. Glad I didn't have to have the shots but if that's what your doctor recommends than he must know what you need. Are you taking steroids before chemo? That helps to raise your counts before they give chemo and most are on it the day before chemo, the day of chemo and the day after chemo.
Start my Herceptin only next Monday, meet with my PS to discuss exhange surgery tomorrow and go for an echo on Thursday to see how the heart is taking all of this. At least chemo is done!!!
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Neupogen is given to increase your neutrophils - one kind of white blood cell. So you need to look at the WBC plus the % of neutrophils. One person might have a WBC of 2.0 and have enough neutrophils because their neutrophils are still around 70% of the white blood cells. Another might have WBC of 2.0 and very low percentage of neutrophils. My first chemo, my neutrophils went down to almost zero. When my onc ordered the Neupogen, my WBC was 1.5 and less than 30% neutrophils. The next evening the Neupogen hadn't quite kicked in yet. I had a fever and had to go to the ER. My WBC was less than 1.0 (which means less than 1000 white blood cells per uL of blood) and the percentage neutrophils was tiny - I don't remember the exact number but it worked out to about 100 neutrophils per uL when normal is 2100 to 7700.
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Don't even see neutrophils listed on my blood count paper that I get from the lab each time. Thanks for explaining the difference in treatment.
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Blessedby4 ~ Sometimes the lab reports use acronyms that can be hard to decipher.
Neutrophils show up on my report as "ANC" = Absolute Neutrophil Count.
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Don't have that one on my report! Go figure!!
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Blessedby4,
I have 3 young children (ages 8, 5 and 10 months.) I am sure that might play into my immune situation as well! They are germ breeders!
As for the steroid (I am assuming you're talking about decadron) I only take it day of chemo in the IV and then in pill form for the next 2 days after chemo. I wonder why it's different. You would think there would be a certain protocol.
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I could not remember what was on my reports so I had to go look. I have kept a lot of papers but not all my blood work papers because it would be an outrageous stack. the last one I have in my file was 9-3-08 and I was in good shape. It was a the last of my treatments. it does show everything including Neutrophils. it tells me what mind is and what it should be. it is nice to have that I guess to know where you stand but even if you don't have that info it is good to wash your hands with soap and to do all the other things to stay well. I am not on any chemo but I do try to keep away from germs with working with the public. there are so many rude people out there. Two women that work at a Nursing Home came in Monday and they were congested and coughing and not even trying to avoid my area. We are supplied wipes to clean our area and hand sanitizer but I would rather just wash with soap when I can.
I go for a checkup with the radiation doc.today. I am not sure why unless it is so he can get more money. I am still not happy about that whole experience. he is on TV a lot when they advertise that treatment center and I get mad every time I see it. I am so glad a lot of woman had an easier time than I did with it.
I hope everyone stays well out there. I have been exposed to the H1N1 but knock on wood nothing so far.
Carolyn
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Blesedby4: I began Neupogen 7 days after my first infusion. My neutrophils were just under 33%. I bottom out to less than 11% after my fifth infusion. That was pretty scary, but I was never hospitalized. During chemo, I saw my oncologist every week, sometimes three times a week, so I was monitored carefully. After chemo, I would go in when ever I felt that my counts might be dropping. Basically, I was still seeing him every week. I wondered if I would ever get off Neupogen, but I finally returned to the lower end of normal after the second month post chemo.
H1N1 - I posted this previously, but it might be helpful to post it again. I am tutor at an elementary school and we had a case of H1N1 with one of my students. My oncologist said that H1N1 attacks the lymphocytes, not neutrophils so he wasn't overly concerned. However, as usual, I was cautioned to follow all the normal precautions. I hope this helps to put your mind at ease.
Dasher: I am glad to know that you had your port out with a local. I hope I can have the same! Six more Herceptin infusions to go and I have to remind myself that it is too early to schedule a February port removal.
Gramma: I am not so wild about my radiologist either. I make appointments and the office calls and cancels them because they need the appointment time for new patients. I am truly glad that his office is doing all they can to accomodate new patients, but I don't see why they can't have a nurse practioner see me for follow-ups. They cancelled my appointment in early October and I haven't rescheduled it yet.
Cheers and best wishes to us all!
Cloud
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Cloud, My rad have cancel my appointment 3 times this month and I finally seen one yesterday but I have never seen him before. I guess a new person. anyway he finally seen what I had been trying to tell the other docs about my neck and collar bone. I am supposed to have an ultra sound next Wed. and then when I go in for my blood tests on the next Wed. I am supposed to see them to get a follow up about the ultra sound if they don't cancel it. they never even told me about my mammogram and now I find out the lump they found that I can see and feel is supposedly a fatty mass. I guess it was not worth mentioning to me or my med onc. I sure hope it is not cancer! It is not as big as my cancer was but about 2 cm he said. I am supposed to have another mammogram next month but just on one breast. I see my med onc Dec. 2 so I am going to find out if he saw the results of the mammogram.
Just to warn everyone about using the arms where you had lymph node removed. I did not realize I had not been using my arm as much and when I tried to raise my arm over my head it really hurt and stretched my skin. I must get back to my exercises. I guess it does not matter it has been over a year I still need to keep it moving because of scar tissue. It is my left side and I am right handed so I don't use it like I do the right side.
Carolyn
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STUDY FOR NEW DRUG FOR HER2+ PATIENTS
Ladies, I met today with the research nurse regarding the study my onc would like me to join.
The drug is Neratinib; it has been studied in lab animals and humans. The 2 human trials prior to this were done on HER2+ patients with bone or organ metastises. This is the first study in HER2+ patients with no known organ or bone metast. To qualify for this study you must have had one year of herceptin and all "known" cancer cells removed/irradicated.
Neratinib is very similar to Herceptin in that it attacks HER2 cells. The difference is, some people are "herceptin resistant"; this is for those folks. The docs have no way of knowing the exact level of herceptin resistance until/if the cancer comes back. Neratinib would prevent a recurrance of wayward HER2 cells in the herceptin resistant patient. The HER2+ patient would take the herceptin for a year, then follow up with the Neratinib to prevent a recurrance of the cancer. This would increase our odds dramatically.
The study is for 5 years. They want 3850 participants world wide. For the first year, the participant will take 6 pills a day for an entire year. It is a triple blind study which means some folks will get a placebo, but only the research company will know who that is.
Side effects: Diarrhea, nausea, fatigue, heart failure, etc. same list we all got for herceptin. Only with this drug, all of the above is less common. The study requires regular MUGA and bone scans, but the study pays for this, not your insurance., The study requires regular mammos (even with mastectomy) and the participant pays for that.
During the study, your onc is your primary care physician. The resaon is they need to know every little thing about you in case it becomes a common side effect.
Bottom line: I would take 6 pills a day for 1 year. I would see my onc apprx. every 3 months during that year. I would have a MUGA and a bone scan every 3 months and 1 brain scan during that year - all paid for by the study. For the next 4 years, I see my onc every six months and have periodic scans and blood work. If at anytme I want to quit, I can - no strings.
For me, you and all our HER2+ sisters, I think I am going to do this. I really want your input. This will take time out of my life, but hey, I had cancer, so I am used to that.
Thanks guys! I love you all.
Lisa
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Lisa, I just got the paperwork in the mail today for this study as well. The drug sounds fantastic--the thing that worries me is the whole "double-blind" aspect of the study. You only have a 50/50 chance of getting the drug. I wish there wasn't a placebo involved. Still, 50/50 isn't a terrible gamble. There are several threads on this trial that I have been following on this site. It seems that most of the participants know whether or not they are getting the Neratinib (at least they think so--they won't know for sure until they are unblinded) because the diarrhea side effect has been so bad.
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weety, I guess what you need to think of is: This study is not for you or me, it is for those that come behind us. If we get lucky and get "the real drug" and it works, God bless us. If not, we tried to help our sisters, daughters, neices, neighbors.
Lisa
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May I add one thing to the discussion? I have a peer support person from our local Breast Cancer Coalition. She had her2+ BC over 7 years ago. She has helped me through so much and just been a great example by being all done with this and living a normal life now.
But anyway, SHE was in the original Herceptin trial. She was in the placebo group. Around the time she was finished, the herceptin results were so amazing that they pulled the trial early and went public with prescribing herceptin (as we are so lucky to have today). So she went BACK and did a year of Herceptin even AFTER her treatment was all over. And...she said that it was so new that Ins was not routinely covering it at that point. They eventually did agree to cover it, BUT if they hadn't, the docs said she could go to the drug company and push them to give it to her for free since she was a member of the trial. So I would say this: If you don't do the trial, you DEFINITELY won't get the new drug. But if you DO, you have a 50% chance of getting it now, and the option to get it later if the results are positive and it becomes standard of care.
I wonder if I will get offered the trial when my herceptin is done next Spring. I wonder how they pick.
Good luck to you both as you make your decisions.
Amy
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Amy, this particular study will be full by the time your herceptin is done as it only takes 3850 people.
Weety, I don't think we are talking about the same study. The one I was counseled on just opened 2 weeks ago.
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Lisa, this sounds like a great opportunity. I would get in on that if I had a chance but no one has approached me with any kind of trial. wonder how they find the ones they want to be in the trail. Is it the area they live in or something else?
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gramma, it is based on several things. You must have completed one year of herceptin, but not more than 2 years ago; no currently knwon mets (they already did the mets study), no existing health issues that would conflict with knwon s/e's of the drug - for example, the drug can cause congestive heart failure so if you already have heart disease you would not qualify. The study is world wide. The 3850 people must be spread out over all modern countries. So far there are 7 people from my doc's office.
Lisa
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I don't think the study will necessarily be full in a year. It has taken some of the studies more than a year to enroll 3000 women. Some of the study locations aren't enrolling yet. They list 5 non-US locations.
For others who are interested, the study information is at:
http://clinicaltrials.gov/ct2/show/study/NCT00878709?term=NCT00878709&show_locs=Y#locn
This lists the requirements to join the study (which are pretty short for this study) and has a list of study locations (though this study hasn't included contact info in that list).
If your oncologist is participating in the study, your oncologist might suggest that you join the study like Lisa's did. If your onc isn't participating in the study, you can contact Wyeth using the email address on the clinicaltrials.gov page above. If you click on the email address there, it will open an email with a subject line with the subject line. They will give you the contact information for a study location near you.
I did that and gave the one near me a call. They won't start enrolling women until December. The one near me isn't associated with my HMO. I may send another email to Wyeth to ask if any Northern California Kaiser location is participating. I haven't decided whether I would enroll if they are. I'm kind of put off by the diarrhea side effect. Apparently almost everyone who gets the drug (rather than the placebo) gets that. I had bad diarrhea almost every day on the Clodronate trial - my stomach still isn't back to normal and it gave me a yeast infection so I'm not excited about entering a trial that does that again.
But if I had positive nodes like Lisa, I'd probably change my insurance at open enrollment if I needed to so I could switch to a local oncologist running the study and be covered.
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It is interesting how it is said that the study would increase our % of no recurrence. I believe that is why they are doing the study to SEE if it indeed works. I truly hope It does. I have not been approached. I hope that I am. I too have had diarrhea issues. I have been on a probiotic since chemo. YUCK! But like Lisa said Hey!!!!
Blue you are just great! Just in case you forgot.
Check out my new avatar. Uber blond!!!!!
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Blue, thanks so much for putting up the link. My doc is participating in the study and Wyeth pays for everything, not my personal insurance. I think I am going to do it. If the diarrhea becomes an issue, I will just quit.
Bold - Uber Great!
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I am very interested in doing this trial but as of now there is not any centers in Maryland participatin
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