Taxotere, Carboplatin and Herceptin
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Amelie_Rose - Welcome! It actually took me a little while to get used to my port. I am close to finishing up my year of herceptin and then will get my port removed. It has functioned really well and I am very glad that I had it. Some women adjust really quick. For me I had a stitch that didn't dissolve for about 6 weeks so that was kind of annoying. I was so scared to start chemo too. Have you read about icing your fingers and toes to potentially prevent nail damage from the taxotere?0
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Today I completed my 6th and last TCH! Tomorrow I return for my Neulasta shot. This will be my first in all the 15 weeks I've been on chemotherapy, so I have been fortunate. My luck ran out last week ... I ended up in the emergency room and then the hospital because my WBC was 0 and I started running a temperature. They pumped me full of antibiotics and my oncologist released me after four days.
I am excited about only being on Herceptin until April 2012. It will be so much easier to do. Can't wait for the bloating to be gone and not having to worry about neutropenia.
Now on to seven weeks of radiation on Aug. 22. How did folks tolerate that?
Thanks all!
EvelynMarie
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Yes, I eventually adjusted to my port and don't even notice it anymore, but it took about 3 to 4 weeks. The first few weeks were very bothersome. Although the port area was sore, the problem and discomfort was in my arm. I had quite a bit of nerve pain and it hurt to let my arm hang straight. It also felt like something was pressing on my funny bone. The good news is it does go away and having the port is much better than getting an IV every time. Hang in there! Its so much easier and less painful to access the port for your treatments.
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Amelie_Rose I remember the port being uncomfortable and sore for a few days immediately after the surgery. I actually felt a little bit short of breath as well from the trauma to the area. I described it like an elephant sitting on my chest and the elephant decided to get off my chest after a week or so:) After the first week, my port has been completely comfortable and has never bothered me at all and I've been so incredibly grateful for it with the frequent infusions-I don't notice it anymore.
Please don't be afraid of TCH. Yes, there are SEs but everyone is different and not everyone gets them all. I had a relatively tough time through TCH and yet I continued to work full-time so it's a matter of perspective. Some of the preventative things I was really glad I did: Acetyl L Carnitine to prevent neuropathy, icing my nails during Taxotere, drinking a lot of fluids throughout chemo. You will get a good sense of your prominent SEs during your first cycle and will know how to deal with them as you go along. There are so many people here to help you and give you tips along the way-keep in touch with us and best wishes as you begin TCH.
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Evelyn Marie - CONGRATULATIONS on finishing chemo - YAY!!0
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Evelynmarie Congrats on finishing TCH!!! It's amazing to reach the end and start to feel a lot better. Oh the bloating-I had that as well and noticed a significant improvement between weeks 6 and 7 when the swelling stopped and the fluid weight went away. You'll read lots of different Rads experiences. I'm happy to say that I'm in Rads now and today was #26 of 33. I've had absolutely no skin reaction at all-no discomfort, no burning-nothing-but I have definitely had increasing fatigue (could be because I'm working full-time, doing Rads right after chemo...)0
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Dragonfly - what lotions, etc., have you used before/during rads?
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Dragonfly1 .. Sounds like we are in a similar situation ... I've been working fulltime too through chemo and I intend to work through radiation. I am scheduling radiation for the end of my workday so I can return home. I have been doing really well through chemo ... not too many SEs ... just the fatigue, bloating and change in taste but I've managed to control that. I've been able to maintain my exercise routine throughout ... elliptical, free weights, and yoga. I think I am going to be ok through radiation ... the doctor warned me about the fatigue. After all we've been through, I think we can manage this fatigue.
Sounds like you are doing well ... I am glad to hear that. Keep us updated ... I'd like to hear how you are doing. I've been on the radiation site and I have my baby wash, my lotions, etc., all ready. Did you do anything different from your normal body/skin care routine? Thanks a lot for sharing!
Omaz ... thank you! I was thrilled. I brought cake in to the wonderful infustion staff and a note which made all the nurses weepy. I got balloons from them.
EvelynMarie
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Jackifp My RO believes in using only Aloe unless there is skin breakdown and I was instructed to use only Dove Sensitive Skin for showering. So, I've been using Aloe (with no alcohol in it) 3x/day since the first day of Rads. Aside from that I've been very careful about sun exposure to the area. I still spend time outside and go swimming, etc but I wear a rashguard swimshirt with sunscreen in it for extra coverage/protection. It seems to be working well...0
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Ladies, thank you all so much for answering. Sounds like the pain and discomfort vary a bit for everyone, both in lenght and intensity. I hope I'll feel better tomorrow. I understand the need for the port; it's just the thought of having it in my body that freaks me out. I also hadn't expected it to ache so much all day... Oh well, I'll look forward to the day I stop noticing it.
Omaz, yes, I have read about icing hands and toes. I have in fact made a list of all the helpful hints I've found on this site and plan to use most of them. Thank you. You ladies are helping so many others by sharing your experience.
Dragonfly1, what's the difference between L-Carnitine and L-Glutamine? I've bought the latter to use for neuropathy and mouth sores prevention (found that hint in a book). I was just wondering why you chose one over the other, or whether you used both? It must be so great to be done with chemo! Can't wait to be on that side of treatement as well!
Evelynmarie, Congratulations! I always rejoice (and gain encouragement) from hearing about others who've made it through.
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Amelie_Rose- Welcome!! I drug my feet about getting a port. I really wanted to try chemo without a port until I realized I would be getting herceptin weekly and would only have one arm for IV's and blood draws. I am now so glad that I have it. It was tender and uncomfortable for the first 3-4 weeks after placement and I did notice a heaviness or pressure like sensation around my neck/ shoulders/chest area for the first while, but that has gone away. I had my first chemo one week after port placement. I was really nervous about it, but I used the numbing cream and didn't feel a thing. It's been like that ever since! It's way easy. My port site has a little bruising because it is accessed every thursday, but it isn't too terrible. It is noticeable on my skin though, and I feel like I have an alien sticking out. Even so, I am glad that I have it. My onc would like me to keep it for 2 years, but I am planning on having it removed when I have reconstruction this fall. Best of wishes to you!
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Amelie_Rose I actually chose Acetyl L Carnitine after hearing about it from another member right before I started TCH. I also see a neurologist because I have terrible migraines and I asked him about it at the time and he agreed that it was a reasonable choice that may help to prevent neuropathy (although he admitted to me that neurologists don't really know how to prevent neuropathy from chemo and he wishes they could find the answer). I don't know much about L-Glutamine but I notice that a lot of people use it...0
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I use the L-Glutimine. I tried the powder but didn't like the consistency. I stopped using it for a few days and the numbness in my fingers increased significantly. I spent the extra bucks and switched to the pills and the numbness went away.
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My oncology nutritionist at the oncology center was the one to suggest L-glutamine powder.
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Amelie_Rose it took me a bit to get used to my port but I eventually did. I actually only have 2 herceptins left. My onc likes to keep the port in for 2 additional years just in case I need it but she did say I could have it removed if I wanted. The issue is if I do need it they can't put it in the same place. I have decided to keep it for the extra 2 years since it doesn't bother me much. It does need to be flushed evey 3 months but I can do that at the same time as my doctor appointments.
I started using Acetyl-L-Carnitine after I started to get neuropathy. I only ended up with some in my left foot that still gets a bit numb when it humid or cold out. I really felt t his helped a lot because I was getting tingling in my fingers before I started taking it. Also it's a memory booster.
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Amelie_Rose,
The port will become something you don;t even notice in a very short time. Mine seems to stick out more than other peoples I have seen but it still isn;t a problem.
Warrior princess-you are so close to the finsh line-good for you. I am 2 weeks PFC and am so happy it's done. My taste buds are retuning and I am working my way thru my cravings list. I never got the metal taste, for me everything tasted like ashes (or what I thought ashes would taste like). And everything tasted sickening sweet. I would lose 10-15 lbs with each round then eat my way back up in week 3.
rdg-I have ended up with 3 large whitehead things on my face that are making me nuts. I have not heard anything about the Head and Shoulders-wish i had tried that. I have an appt with a dermatologist but not til Oct. I may go to a spa thing and see if they can fix them-like with an extraction thing. I will let you know
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Hi all! Those who are experiencing acne...PLEASE do not try to extract them yourself. I have worked at an avers spa for 15 years and extracting them with our skin being so sensitive will cause scarring. A cheap way to dry the acne out is with Tea tree oil.
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I used L Glutamine on the direction of my naturopathic doctor (DO). Had no problem with neuropathy, but who knows if that was due to the supplement or if I wouldn't have gotten it anyway. I also had no trouble with my nails and didn't ice at all - never heard of it back in 09. I just think this stuff is so individualized - the way the chemicals affect the body. Do the supplemental/preventative stuff and take one day at a time and see what happens. It is not easy - the not knowing. But day by day, we do get through this. And now, i have to admit, it is fading more and more in my memory. I remember talking to women who went through this and asking them specific questions and they would think back and say "You know, I really can't remember exactly" and I would think, "I will NEVER forget this." And yet, 2 years out, I am now one of those women myself! Time does have a way of healing us, both body and spirit.
Take a day at a time, and step by step, you will come out the other side.Amy
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Ladies, thank you all for welcoming me to this board and for answering my questions about the port and supplements. I have followed this site since I was diagnosed in April and I knew I would join the discussion when it was time to start chemo. I know I will need your support and wisdom.
The port still hurts on day 2. I talked to office nurse and she suggested I take some Advil and wait to see if the pain and puffiness get better in a couple of days. It's so reassuring to me to hear that all of you have had a period of adjustment before you became used to having one in. Lago, lililady and Christean, thank you for joining in and sharing your experiences with your ports.
As for the glutamine discussion, I am happy to hear that some oncologists actually recommend it. Rdg1959, what dosage did you use for the pills? I read about L-glutamine in a very useful book I got, "The Chemotherapy Survival Guide". It's written by two oncology nurses with years of experience between them. In it, they suggest mixing 2 tsp of glutamine powder with water, gargle first and then swallow. It's supposed to 'help repair the mucous membrane of the entire digestive tract', thus helping with mouth sores and GI issues. It also helps with neuropathy. I believe I will try it and hope it works. It's always better to prevent than to cure.
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Had my first ever Neulasta shot today and since I had my final TCH infusion yesterday, I am pretty sure this is my first and last shot! I know that some people have had different issues with these kind of shots so I am keeping my fingers crossed that I will be fine. I have my Aleve ready. Did anyone need anything stronger than Aleve?
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EvelynMarie - I only had the bone pain with my first Neulasta shot. The 2 since then I haven't noticed. One of the nurses thought that the pain came from the chemo rather than the shot. I didn't take anything other than Tylenol. I heard that Advil and Aleve were blood thinners that you probably didn't want to take during chemo, but I would ask your oncologist about that for sure. I've just always stuck with the Tylenol.
Wishing you an easy time.
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Wendyspet you are correct about the blood thinner issue but I checked with my onc and for me the Aleve was OK. My worst pain from the neulasta was from the first shot. The other 5 were not as bad.
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evelynmarie I had terrible pain with the first neulasta shot but the rest were not painful. Aleve was the only thing that seemed to help. The pain hit approx 48 hrs after the shot and felt like contractions in my lower back-it tends to affect larger bones.0
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My nuelasta pain was lower back, ribs, neck and jaw.
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I was told to do 30g of glutamine. I got it in powder form from GNC. My neuropathy started with the first chemo, possibly the glutamine helped but it got worse with each treatment. I also took B6. Now, 8 months after chemo the neuropathy is slowly getting better.0
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Thank you all ... I've already started with some back pain this morning and it hasn't even been 24 hours since the Neulasta shot. Seems to be sporadic for the moment so it is bearable without medication (but I've got both Tylenol and Aleve on standby). Fingers crossed!
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amelia_rose, welcome! i'm just about a week ahead of you and i can certainly understand your fears. my port was painful at first. the day after surgery, i went back to the dr. because they'd taped me up so tightly i couldn't move my head without pain! also, i think i was allergic to the tape. He changed the bandage and all is well. I had some of the same chest issues that the others have mentioned, but it's getting better. it's been a little over a week since i got it and i've almost forgotten about it. i'll be glad when i can take a shower, though. right now, i can't get it wet.
my first chemo was thursday ... so i'm on day 3 past it. i got my neulasta shot yesterday. so far, i have no SE's. none. well, today i'm cold. it's 105-degrees outside and i'm cold! it's not chills. i'm just cold. it's rather nice.
good luck as you go along. everyone here is very helpful and supportive.
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YaYa5, thank you. I'll be interested to know how you are doing since our treatment dates are so close. My first one is this coming Monday. Our diagnoses are also almost identical, except maybe for the grade. My port is hurting a bit less today, but the area is still tender and sore. However, I was told that I could shower after 24 hours because they used glue instead of tape to close the incision. Here is hoping you have a good weekend, free of SE's.
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My onc advised me to take claritin for the neulasta. It is supposed to help prevent pain. I took it the first day of the shot and for 10 days thereafter.0
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omaz, really? claritin for 10 days after? i'm kinda worried about taking claritin AND benadryl for sleep ... both pills in the same day.
amelie, i promise that you will do fine on monday. oh, how i dreaded that day and mostly because of my port. i couldn't feel the stick. i'm serious. and i don't think you will either. my port, as i said, is still sensitive and the stitches are still there and i can't shower, but having that port on thursday was the BEST. you probably don't believe me now, but you WILL think of your port as your friend. please let us know how it goes.
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