Taxotere, Carboplatin and Herceptin
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I saw my onc today before my Herceptin treatment and she put in the order to get my port out. It will not be until after my last Herceptin in three weeks, but I hope they schedule it pretty soon after that.
I had a bone scan today because of the bisphosphonate trial I was on. I got off it early because the Clodronate that I was taking for it was giving my kidneys a hard time. Even though I only had it for a few months rather than 3 years, they do the tests that they would do at the end of the study which is mainly a bone scan. When it was all done, I had a look at the monitor. My skeleton looked very ready for Halloween.
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Blue, I think getting the port out is going to be a big It is finally over moment for me.
My Breast Surgeon put mine in, but I have not seen him since last November and have no intention of every seeing him again. Excellent surgeon, put turns out he is a pervert. I am going to have to speak to my onc about someone else to get it removed.
Started a serious diet yesterday. On Sunday I went over the limit on the bathroom scale. Time to get serious and stop fooling around. I am back on The Eat Clean Diet. No processed foods, no raw sugar, no mayonnaise, bread, alcohol, diet soda, etc. I have got to get this weight off.
Have a great day ladies!
Lisa
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Congrats to all your port removals. I did not get one and have 3 more chemo and of course Herceptin. It hurts during weekly pricks now but pray I get through it. We can only use one are with the nodes removed from the other one. so far so good. So now what for you ladies. Are you doing hormone therapy, diet, rads what now for all of you. did anyone hear of a study doing Herceptin for two years and have you heard of the Herceptin with some power boost. I worry when all is done I am fighting this alone.
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Hello everyone! I had the twitching too and I think it is from taxol. I don't get it anymore or at least not often but I had it before cancer. I have fibromyalgia which causes some of that. I did have problems with white cells from the very first tx and so I got shots. they tried the Neupogen first but it was not strong enough and so I had to have Neulasta the day after tx every time which kept the white cells up but I had a great deal of bone pain. I did not have a lot of problems with nails mostly toenails but I do have ridges in my finger nails and they would break off at the ridges that went across so I am thinking that may have been the time I got my tx and as they grew and broke then it finally quit so I am done with that. Now the ridges go long ways down the nails but not a big problem. I do not have my nails done and my book said not to use the acetone to clean polish off or it would affect your nails. Maybe that is why I never had any turn black and fall off. I had radiation and it was hard one me but there again it is part of my other problems. If you have Lupus you are not supposed to have radiation but I think my auto immune problem is close enough to Lupus I probably should not have had it but I decided to take the chance. I hope it was the right decision and no more cancer.I do not have any hormone therapy and that is great but I do watch my diet so I don't gain weight. They told me the cancer could come back in the fat around the breast since I had a lumpectomy and I sure don't want to go through all this again. I had 22 lymph nodes removed but only 3 were cancer and the sentinel one had cancer and was as big as the tumor which was more than 5 in size. I find most have less side effects than I did and they keep blaming my other problems for that. A lot of women do great and never have anymore problems. I hope we all fit in that category.Positive thinking helps.
Carolyn
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Gramma23 I had ridges also and I used a buffer to buff them down it helped alot with the looks of them I am telling you I had to have a sense of humor just think it takes a fairly attractive lady to brown and yellow nails twitching eyes, bald, fatter than norm, eyes watering, boobless, its unreal what we go through but we are women men couldnt handle much like loosing a ball is what I tell my boys when they actually said your fine dont cry hmmmm just wanted to give you a laugh through it I counted the days until I was done for sure. I used tree oil on my nails and it helped even after a year after chemo and still waiting to let my head go naked oh yes now I have my boobie but no nipple now if this isnt cute hmmmm Take care and try to smile through it and let yourself cry too I did no matter where I was I was at the coffee shop one day ordered Soup it was all I could eat and forgot my wallet and started crying and the lady gave me a free cup of soup I just told her its all I can eat and I am so hungry she must of thought I was homeless I still owe her a flower ...
Maura
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Lisa, yes, getting the port out will be a big moment for me, but so will the last Herceptin. I think I mentioned that the next one would be last about 20 times during my penultimate Herceptin. My nurse was very patient.
Shelclaire, thanks for the congrats even if they are a bit early. Mine isn't scheduled yet. I didn't get the port to avoid the pricks. I still got most of my blood tests and all my MUGAs using veins in my arms because the lab techs can't access the port. The techs where I go are good and if someone gets a vein inside my elbow at one try, it doesn't hurt any more than when they stick the needle into my port. The veins in my arm aren't that big and I was concerned that the concentrated chemo chemicals sometimes hurt the vein - by using the port, they go into my juglar and get diluted more quickly in the high blood flow of a big vein. I didn't want to " blow" veins for future use. I also like being able to move around during chemo without having to worry about dislodging an IV in my arm or hand.
The study of 2 years of Herceptin versus 1 year is HERA. It has been going quite a while now and has released results from the one year arm and the no Herceptin control arm but it hasn't released results from the 2 year arm. The most recent update that I've seen is an update after 4 years of follow-up released March 2009. Because Herceptin was being shown so effective by early 2005, they allowed women on the no Herceptin arm to "cross-over" to get Herceptin. A little under 1/4 the women already had had recurrences by then and a little over 1/2 crossed-over and that included most of the women with more advanced cancer so the comparison between the non-Herceptin and Herceptin arms after that isn't very meaningful. (Of course that was the right thing for them to do for the women even if it blurs the scientific data.)
It is kind of frustrating that they haven't released 2-year vs 1-year data, but my interpretation of that is that they haven't seen any significant difference between the two yet or haven't seen anything that favors doing 2 years. If they had, I expect they would have released the data. Given that there are small studies showing that women get much of the benefit from Herceptin from very short durations of it (9 to 18 weeks), I'll be very surprised if the 2-year arm ever shows significant benefit.
As far as something to boost Herceptin, since you are hormone positive, you should have the option of hormone therapy. There is Avastin during chemo on a study, but that has its own risks - I was offered the study when I began chemo and decided it wasn't worth the risk. There is the SWOG 0307 bisphosphonate study which IIRC you can join up to 8 weeks after your last chemo. They hope from some earlier studies that it may reduce recurrence by about a third though there are also some earlier studies that show little or no effect.
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Lisa, my BC surgeon doesn't do the ports. A radiologist places the port using the imaging tool in radiology. A regular surgeon takes it out and my onc told me it won't be my BC surgeon. She asked me if I had another surgeon, but I don't so who I get will depend on who is available. I'm okay with that - it is a pretty minor procedure and I've been generally happy with the docs at my HMO.0
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We lost a good man he was so hunky Patrick Swassy he could make a nun dirty dance...
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Hey sistahs. I just wanted to say that I have been doing weight watchers. I think even if you do any kind of diet plan the most important thing is to journal. Sometimes we really do not know the calories of things.Veggies are free. I am eating pretty healthy. I still love a little bread. And cheese is good too. I am allowed these things. Everything in moderation. It is good also that it controls our portions. That a big one for me. I am a little over 5'9 maybe less. (shrinkage) I got soooooo fat. It is hard enough being bald but fat and bald is a horrible combination. I have a long journey ahead of me. I have 28 pounds left to lose. I am trying to exercise more and eat less. We have a thread if anyone wants to join. Its funny though it is not to active. I guess the commitment is hard to make. We have weigh in on Mondays. I would love to change that to Tues. (for obvious reasons) The thing is that I do not want to do something so rash to my life style that I will surely fail. I would like to always be able to enjoy wine on occasion or weekends. I love to cook and look forward to many years and many recipes. I have to get into the proper BMI. I want this for my health and my ego. Thats some strong motivation. I would love it if more people were on the thread. If you think about it, it is a part of our overall recovery and ongoing health. Hell if we can do chemo and rads we can do anything. Right?
I never had a port and I have never regretted it. I drink lots of water and work out before infusions and so far so good. Congrats on drawing to the end of Herceptin. I can not wait. I am tired all the time and my hips and lower back hurt, I hate the taste and sticky nose. My fingernails are thin and my hair is growing slowly. BUT..... I hope it is giving me a long life!
peace and health..
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Christy........my port does not stick out at all, as a matter of fact it looks pretty flat there with just a scar. The nurse had trouble accessing it last time she took blood and had to have another nurse come and do it. She could'nt feel the 3 little dots on top because mine seems to be a little tilted and farther under the surface than others. The 2nd nurse told her you have to tilt it back a little so you can feel the center.
Went to the plastic surgeon today...... they said I could get my expanders in January. Wow , not looking forward to 6 months of discomfort from those!
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Wendy, my port is a bit tilted. They had trouble accessing it at first because the swelling from having it put in made it deep. The first time they accessed it, the regular needle didn't work and they had to get a longer one. After a month or a bit more, the swelling went away, and it became easier to access. At first it didn't protrude at all but over time it has protruded more. I don't have any trouble with it showing in clothes prehaps because I don't tend to wear really low cut tops and mine may be placed a little low. I wear something with a kind of loose neck when I go for infusions and I can pull the neck down for them to access the port. The catheter is the thing I notice - it makes a bump in my skin especially at the neck. I notice it when I look in the mirror for just about any top I wear. Perhaps others don't because they aren't looking for it but it is really obvious to me.
I tell nurses that it is a bit tilted so they can find the dots. When they realize that, they have no trouble. Some remember but some don't or sometimes I get one who hasn't accessed it before so I try to remember to remind them.
It is a love-hate relationship because it makes chemo more comfortable having the IV out of the way of my arms.
They called to schedule removal yesterday. It comes out on Oct 9 after my last infusion on Oct 5. Woo hoo! I'm almost a free woman.
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Woo Hoo bluedasher!!! Oh my gosh, you get your port out soon! This is so exciting! Those three little dots peering at me from just under my claivicle as so creepy to me. I love reading that you are getting yours out soon! So very very happy for you. What a happy day October 9th will be for you! October 8th will be (is planned to be) my #3 TCH treatment, tomorrow is #2. I hope to be posting here in September 2010 that I am getting my port removed in early October! Wouldn't that be wonderful. I keep looking to the horizon... Best wishes to you...
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Wendy....I am so glad that you have a date scheduled for your expanders! I don't think you will have to wear the expanders for 6 months since you are done with chemo and not getting rads. I have had mine for so long because of those 2 reasons. I will have to wait 3-6 months after rads to get my exchange. I would think that you probably will only need a couple of months of fills before exchange?0
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I am 3 months out of chemo, 2 weeks ago I finished 30 rounds of radiation, I'm half way done with herception. During chemo I had every SE and some that weren't even on the books! And now my blood is going down and my weight is going up. I can grow more face hair (except eyelashes) then "head hair". I am thinking of joining the circus as the bearded fat lady!!
But I am headed to Calif. to see my 1st grandbaby Zoe Marie, who is 1 month old. I will be seeing her for the 1st time. It will be a happy/sad time; during my radiation my niece died from cervical cancer and I was not able to go to the funeral. She was 32 and left behind a husband and small boys. Family and friends started the Shawna Kilbert Cervical Cancer Foundation and for a fund raiser they are having a memorial walk/run/ family day in Fresno on Sat. The money raised will be going to women in the Fresno area who are battling cancer and who need extra help with daily expenses. While we miss Shawna a lot, it warms your heart to see how many people come out to these events to help others.
have a great day and hope your SE are small!!
Karen
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Karen you sound like me. I had more hair on my face but mostly peach fuss. It is slowly going away and my hair is growing on my head but slow still. I am still having problems with blood counts. My brother died at the beginning of my radiation and I also had every SE but I am here and feeling stronger all the time. I am so sorry about your niece. Seems like I know more and more people who have or had cancer. I guess either I pay more attention to it or there is more. I am glad you are going to get to see your grand baby. They are precious even when they get grown like mine. Well the youngest is 13 now but still they are my babies. I guess the next is great grandchildren. Have a great trip and be good to yourself!
Carolyn
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Hi - one down, 5 more to go. I got really sick about 8-9 days out from TCH, sore throat, fever, bad tummy and I was probably neutropenic, so my doctor is going to give me a Neupogen shot. Has anyone had this and what if any side effects (positive or negative) did you have - thank you, Christine0
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Christine, I get 5 neupogen shots (days 2-6) after each tx. Haven't really noticed any SEs, but they help keep the white blood cell count up to fight infection. Do you think you had some kind of flu? Usually by day 8 after a tx I feel good again. My worst days are 3-5--don't even want to leave the house and am very, very, tired.
Hope you're feeling better soon!
Becky
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My first time, I got a neutropenic fever about 9 days after chemo. Monday, I felt yucky but didn't have a fever - tremendously tired so that it was hard to sit up. My onc had me take a blood test and my neutrophils were about 1/3 of the bottom of the normal range. She prescribed 5 Neupogen shots and I went to the chemo room for a nurse to instruct me on injecting myself. The next evening, I had a fever (the stuff takes time to work).
But I didn't have the sore throat. Did your onc order a blood test to see how low your white cell count was? My temp went just over 100.5 in the evening and the instructions were to go to the emergency room if it went that high outside office hours. They took it very seriously, did a blood test, urine sample, chest X-ray. They found no indication of an infection, but my neutrophils (the kind of white blood cells that fight infection) were almost zero but the did see immature cells showing that the Neupogen was starting to do its job.
After 3 shots, I had another blood test and my white cells were high enough so for the rest of the chemo cycles, I had 3 shots each cycle. Neulasta is stronger and long acting so you only need one per cycle but my onc said it would be too strong for me (1 dose equals about 10 Neupogen doses) and have more side effects.
I had an unusal side effect of nausea and vomiting in the evening that I think was due to the Neupogen based on when it occurred in my cycle.
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Thanks everyone - mine was also 9 days after infusion - I had blood count the next day and doctor said it was the neutropenia that made me feel so crappy and since the bug is going around, it could have been a touch of that also (double whammy) so next go, we are going to do the shot (maybe it will be nuelasta, don't remember) and so that should help. They were just coming out with this stuff when I had the first tumor in 2000. There are so many new drugs - Emend helped a lot!
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Christy... No , my doctor said I would have the expanders for 6 months.... the first 3 mos would be for filling them and another 3 months to let them settle, he said, then the exchange..... You are really going to have yours for a long time, aren't you..0
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Hi Ladies,
I saw my breast surgeon this week for an eighth-month follow up. He said he would take my port out at the end of February. I asked about the possibility of leaving my port in just in case the HERA study shows 2-years of Herceptin is the way to go. The surgeon told me the oncologist would make that decision, but it was his understanding that Herceptin is not toxic to veins like the chemotherapy drugs, so a port may not be recommended.
I don't mind my port. It is pretty small. My surgeon and I were chatting in the operating room and I was complaining that he was going to disfigure me. He turned around and asked the OR nurse to find a child size port. He came back with it, showed me the size, and asked if that would make me happy. Yes! I think I was smiling when they put me under. I have worn tank tops all summer and never once worried about my port showing.
Unfortunately, I cannot say that I am as happy with the results of my radiation treatment. The surgeon says that my skin will probably remain discolored--my neutropenia really encouraged tissue breakdown after my radiation. (I had five days of targeted high-dose external radiation before chemotherapy.) Even more discouraging was being told that the radiation inflammation will always wax and wane. Oh well, little complaints when I remember that I was looking at a 30% chance of reoccurance without radiation.
Bold - I will gladly join your eating healthy thread! My butt is too fat for my pants and my bank account is too skinny for a new wardrobe.
Dasher - Great news on your last Herceptin and port removal dates.
Here's wishing us all the best.
Cheers!
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Bluedasher,
I think I got the nausea in the evening from the Neupogen shots also! I only had 2 shots, but both evenings I got super sick to my stomach. I will have to pay more attention and see if the trend continues!
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Congrads to all of you having your ports out that was a big step for me after my chemo and hercp. it made you feel like you had this forgien object out of you soooo gooooddd
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Neupogen- I self inject the Neupogen on day 2 through 8 of each cycle and have not noticed any side effect. During the first cycle, I spiked a fever with nausea on day 8 and ended up in the ER with low WBC so they admitted me for two days to administer IV antibiotics and did blood cultures. Nothing ever showed up on the blood cultures so it was probably a virus.
Now during my second cycle, I am very germ conscience to keep me healthy and so far, no problems.
Week one is my low energy time, week two I begin to come back up and by week three I feel almost normal! The taste buds never seem to recover but that keeps me from eating too much.
Thanks to all of you for the great information you have shared. It's really helped me understand what is happening to my body and gives me hope that there is an end to the discomfort.
Juli
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Entering Phase 3!!!
Life has taken over, and I suspect that's a good thing!I've been off work since the surgery for 4 weeks! For a while in the beginning of my recovery, I was climbing the walls with boredom.
Now that I've been cleared to drive, and am getting my range of motion and mobility back, I'm starting to rather enjoy not having to think about work! LOL!!!
I'm really torn about going back. I want to get back to "normal" (or as we in the sisterhood call it, "the new normal"). But the ability to explore and experience life when you have a whole day in front of you that you can design (instead of having it planned FOR you) has been AMAZING!
I will start Phase 3 of my treatment plan on October 5th. That's when I have the simulation procedure for radiation treatments. Actual radiation will start around one week after the simulation. I will have 25 radiation treatments (Monday through Friday, 15 minutes daily) and then 3 booster sessions...so 5.5 weeks total.
All the while, I will continue to have Herceptin treatments through next April.
I have taken on the monstrous project of getting my Thank-You cards written. I was raised to hand-write Thank You Notes (a lost art I'm finding), so while it's taking me quite some time to get it all accomplished, I think the recipients will be happy and gratified that I took the time to thank them for all they (you) have done for me! Showing appreciation, even for the smallest act of kindness, is one of the most important things we do in life.
I am unhappily finding out that chemo is "the gift that keeps on giving." Even though my last chemo treatment was 7/24/09, I am still suffering some latent side-effects, and they are sneaking up on me! I got some gastro-intestinal "enthusiasm" mid-morning and it prevented me from traveling far from home today (and I had a party with friends to go to in Virginia tonight!) *pffft*
So I consoled myself with one of my favorite drinks, Welch's Grape Juice over crushed ice (yeah, I think I've spent wayyyyy too much time in the hospital, I'm totally addicted to crushed ice right now!)
And I will pay anyone who can tell me why I'm craving BLT's. I've had 4 in 5 days.
Anywhoo, as I get closer to rads, I'll post more.
Right now, my main goal is to force myself to do the left-arm exercises that my Occupational Therapist Heidi-Miranda is trusting that I'll do. I meet with her twice a week to undo the cording (scar tissue banding) that has developed under my left armpit and reached to my elbow since surgery. It's a common malady after lymph nodes are removed. Simply put, it hurts like hell...it hurts to DO the exercises, it hurts to NOT do the exercises. Yeah...go me!
But as some observant person once said, "if you can feel pain, you're ALIVE!"
So bring the pain...I can take it!
*pulling blanket over my head* LOL!!!
Love Ya! Alaina
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Hi All - Haven't posted much lately. Been busy working and feeling surprisingly good. Had my 4th cycle on Monday and it was easier than my 3rd. I thought I would hit the wall this time but felt pretty good and was back at work by Friday. Washed my outside windows and started fall decorating today. I finally feel like I can see the light at the end of the tunnel.
Christine- This is my 2nd go around as well. My first diagnosis was 8 years ago. What a kick in the pants! Here's to hoping we can REALLY put it behind us this time. I have the neulasta the day after every treatment because I work in a school. I feel crappy on days 3 and 4 but start to bounce back by day 5. The first time I had the neulasta I had a headache and bone pain afterwards, but I started taking claritin before every shot and have had minimal pain since. I hope it helps you!
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Hi All - Haven't posted much lately. Been busy working and feeling surprisingly good. Had my 4th cycle on Monday and it was easier than my 3rd. I thought I would hit the wall this time but felt pretty good and was back at work by Friday. Washed my outside windows and started fall decorating today. I finally feel like I can see the light at the end of the tunnel.
Christine- This is my 2nd go around as well. My first diagnosis was 8 years ago. What a kick in the pants! Here's to hoping we can REALLY put it behind us this time. I have the neulasta the day after every treatment because I work in a school. I feel crappy on days 3 and 4 but start to bounce back by day 5. The first time I had the neulasta I had a headache and bone pain afterwards, but I started taking claritin before every shot and have had minimal pain since. I hope it helps you!
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Aliana it is really a payoff to do the excersises if I dont do the stretching for a few days I can feel the pain and also the pulling it feels like I had my surgery about 1.5 years ago and most days I have a reach almost as good as my good arm and I have started the last month doing 3 pound wieghts and that helps alot and staying away from salt which I havent done the last few days has made a difference not a good one I swell alot more wrapping at night helps alot too there are alot of tips on this site I wish I never had to use the site but since I need it I am so glad and blessed its here for us..Have a nice weekend
Maura
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I'm headed to Tampa this afternoon with check in scheduled for 9:30 AM and double mast at 12:30 PM tomorrow. They plan to do nuclear mapping on my right side before surgery to determine if any nodes have to be removed on that side.
I will be staying in a motel Monday night and return see my surgeon Tuesday morning before being allowed to come home. Thank God I have my nurse (RN) sister who will be with me all the way. I have a niece, who is studying to be an EMT who will stay with me for a week or 10 days to help around the house and run errands help me with drains and baths and be my exercise coach! LOL
I'll return to Tampa the week after surgery for Herceptin #3 and post-op with my surgeon. I'm hoping and praying that he will be able to remove the drains on that visit. Otherwise it will mean another 5 hour round trip at a later date or wait 3 more weeks until my regularly scheduled Herceptin "day" in Tampa.
I just want to get all this behind me. Rads start October 19.
Hugs to all the gals doing their TCH. Hang in there and trust there is a light at the end of the tunnel.
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Swampy, you are in my prayers. May God be with you every step of the way.
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