Taxotere, Carboplatin and Herceptin
Comments
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Thank you ladies for your port responses, it helps to know that I'm not crazy or just being a baby about it! I'm sure that I'll be happy to have it once the chemo starts. The nurse hit a nerve when she tried to start my IV for the port procedure and my hand is still having shooting pains from that. But I am officially putting on my big girl panties now, and will deal with my port.
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My port still annoys me on the odd occasion - it just likes to make it's presence felt - doesn't hurt but just feels really prominent. Sometimes it won't give blood but that's not a big deal. I'm so glad I had one though.
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It's interesting how docs downplay the port, when so many of us had the same experience-- honestly, recovering from port surgery was almost harder than recovering from my (major) lumpectomy and double reconstruction. But now that I've had it for a few months I see that there's no other way, and I'm grateful for it, and don't notice it 23.75 hours a day.
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I had my port put in on May 25th and it really hasn't bothered me much at all, except 'knowing' it's there. The day I had it placed (under conscious sedation), my friend and I went out to lunch and got pedicures afterwords ( I did have to take some pain meds and ice overnight though) I also know the area was numbed up with Lidocaine as well, which I'm sure is the main reason I felt so good right after.....I think everybody has a different experience with 'better and worse'....my surgery on April 27th, was by far the worst part pain wise for me. I think my port is going to be my best friend over the next several months. Of course to be used for the chemo, but they can draw blood, give IV fluids (if needed), but not sure about blood transfusions.
I am starting my chemo June 7th...I am really a little scared of this part. I just went back to work this week (yippee) and am hoping to continue working while going through this. I read up on as much as I can, but I am clueless as to what to expect!
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Hi Janny...we have very similar stats...I managed to work through my entire chemo. On the days I had chemo, it took about 5-6 hours. The first one will take longer as they will allow the Taxotere to take more slowly to monitor you. I never needed any blood transfusions (that was what I was worried about). I tried to eat as healthy as I could...I still can't get over how food tasted so awfully different. I am not Jewish, but I might as well be now as I could pretty much only eat the organic chicken broth with homemade matzo balls (sometimes a few carrots made their way into my soup).
It was amazing how sweets repulsed me (sweet products seemed to taste horrid and forget about carbonated beverages!). Funny, I just realized that I have not had a soda since I started chemo! I have no desire to have a Coke or other soda, anymore! I pretty much just drink water and freshly brewed teas (warm or iced). I really don't like my port, but I understand how beneficial it is...I have seen first hand. I still get my weekly Herceptin treatments and am counting down (I have 13 left to go...then will get the port out). I started the Femara (I started menopause at age 40) about 4 weeks ago...I don't know if they will put you on Tamoxifen or Femara after chemo, but the hotflashes do subside (as do the body aches). I love your quote! Hugs...0 -
MelMel, One more thing about the port... I also had conscious sedation and felt great immediately after my surgery. I was still on meds, went home and started unloading the dishwasher, cleaning up around the house... in other words, I probably over-did it. THIS may be the reason I experienced so much pain later. Janny probably had the right idea and I'm sure you'll be in much better shape if you TAKE IT EASY, even though you'll feel fine right after your surgery. Don't lift anything, even putting away dishes- you'll pay for it later! Okay, I think I've covered everything I wish I would've known about ports. They really, truly are a breeze for chemo and you'll forget it's even there very quickly.
Janny, The worst part about starting chemo is the unknown. Don't forget to take your pre-meds the night before and the morning of, they help tremendously. Many of us don't have ANY nausea or vomitting at all! Try not to be scared. The nurses are wonderful and you'll actually find the time is a nice way to catch up on reading or any hobby you enjoy. The other patients can be a great source of companionship and comfort. As for your employer, once you find out how your body reacts to your treatments and which days are hardest for you you can adjust your chemo days accordingly. Make sure you use nausea meds at the first sign of symptoms- that's huge! It's much harder to get under control the longer you wait. You might be tired, and this is progressive throughout your treatments, but don't get too caught up on this yet. Everyone is so different, so just wait and see how yours goes. Sometimes it helps to be working and have a regular routine! People are usually very supportive and understanding. Hang in there! Be confident!
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Yes, Janny, Lady Madonna is right, chemo day itself (as long as you don't have an allergic reaction) is actually kind of nice and restful. Make sure to get Emend if you can, because it's a wonder drug (not a bit of nausea for me), drink TONS of water, and eat small, bland, low-fiber, easily digestible snacks/meals. You'll probably have a few days of not feeling great (with various possible symptoms), but it's manageable and you'll get through it, and before you know it, you'll be at the end of it like some of us are.
Hang tight!
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I have a power port which can do any kind of infusion or whatever. It's not that big and like most of the ladies here said, I almost never notice it. The surgery didn't bother me at all, but it hurts when they access it. Not bad, but worse than a stick in the arm.
Of course it would be nice if it were actually useable! They put the catheter in the wrong vein (a little one next to the big one it was supposed to be in) and I need ANOTHER surgery to fix it. Supposedly a minor one, but I'm still not happy.
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Oh Daisy that's terrible! I'm so sorry you have to go through another surgery... how could they make that kind of mistake?! You have every right to be unhappy. Hopefully everything will go perfectly with your next surgery. Keep your chin up!!
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Thank you everyone!!! I think through this whole thing, I had not even thought about chemo, then 'WAMMY' I'm starting in a little over a week! It stinks because now 1 month post-op from surgery I am feeling so good, I just worry about feeling awful again and that's why I'm going to really try to be as normal as possible (when and if I can). It felt great to be back at work, everybody was so genuinely concerned and kind. I'm pretty open about what's going on with the cancer and surgeries and such, so some people asked me questions, others just kind of listened quietly while we were talking, and I didn't get too many 'odd looks or unkind remarks' which I have heard lots of people have had happen. Wow, what a relief to get that part over with, now I can just 'work' next week.
Thanks for all the tips, I am jotting them down as I see them...chemo teaching this week. Hey, I got some pretty scarves and turban kind of thingie and a sleep hat thingie that I bought online last week. I am assuming that my hair will be gone in a few weeks, so I didn't want to be caught with 'nothing' when it happens. My daughters gave me my "Fight Like a Girl" coffee mug for Mother's Day, and I love it!!! That's just what I'm going to do!
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Daisy, I am sorry about your port. My friend I go to church with had a rough start with her port too but it was a malfunction in the port not something they could help. I liked having mine because it made the chemo so easy. I don't think it hurts to get stuck there but everyone is different. Take a deep breath just before they stick. they always told me but if you find it is too uncomfortable you can get Lidocane cream to numb it. Just ask the doc for a script. I never took Emend but sure wish I could have. I did forget to take my nausea meds at first but it didn't take long for me to remember. They have a new Imodium to help with diarrhea, bloating and gas. I recommend that kind. some do get constipated but if you do take care of it right away and the water should help a lot. I am glad you are going to chemo class. It really got me prepared but still the shock of it all is just not like anything you have been through before. they always give benadryal for allergic reactions where I go and most of the people go to sleep but it gets my mouth going like an upper. I am different than most. My husband can take 25 mg and sleep for 2 days. If you have someone to take you I suggest it because of the meds. Driving might be a challenge afterward.
Janny99, I didn't mean to leave you out. I did go back to work for a little while but it was soon evident I could not work. I reacted worse than most so don't let my experience scare you. I think what kind of job you have is important too. I only worked part time as it was but I had too many problems and there were days I felt like I could have worked but then it was not fair to put my weakness on my work partner. he would have to do most of it and also they needed someone to be there every day so I felt it was better to take a leave. I was IIb grade 3 3of 22 lymph nodes in my arm pit was cancer. I waited too long to go in. If I had gone sooner it may have not have been so bad. I do try to tell every woman it does not matter your age go to have any lump checked. It has made my daughter and daughter in law more aware. I guess if I didn't do anything but make others aware, I have done something right. Again Water is so important or at least some liquid you can get down. Lots of it. It is so important to stay hydrated and flush your system after chemo.
Best of luck to everyone.
Carolyn
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Daisy -- I'm sorry you're having to go through another surgery to fix your port. That just stinks.
As far as accessing the port goes, it doesn't have to hurt! Ask for lidocaine cream -- it's awesome! I put a glob of it on my skin directly over the port entry an hour before my appointment and cover it with a little piece of saran wrap. I don't feel a thing when they access my port.The only other thing I don't like about accessing the port is the taste/smell when they flush it. But thanks to one of the lab techs, I learned that Altoid mints are the best thing in the world for covering that up.
I finally figured out that I can use the lidocaine cream on my arm for them to draw blood, too. So on my lab work days, I put the cream on both my arm and my port. So far, they've been able to get a vein in my arm every time, and I haven't felt a thing. But at least the port is ready to go just in case they can't find a good vein in my arm.
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Janny-Chemo for me wasn't as bad as I thought it would be. My best suggestion is tons of water. The day before treatment, I would drink 100-150 ounces and then I would drink the same for the next 5 days. I would continue to drink a lot of water until the next treatment as well. I really think that this is what helped me out. In addition, I work part time from home and I was able to continue to work. Since we are self employed, I could pretty much work whenever I wanted.
I also was able to exercise for 30 minutes a day 6 days a week. The first 10 minutes were really hard, but once I got going, I was fine for the last 20 minutes. For me, this was a totally mental thing, and helped my outlook tons. I don't think this is the norm for most people on chemo, but it was what made my life feel normal. The exercise gave me energy. Since I have a 2 year old and a 4yo, I need the energy.
It really does go by quickly. Good luck.
V
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Which days are the hardest 'after' chemo? I am kind of planning my chemo on Mondays, then I will be off of work Tuesday and Wednesday, plan on working Thursday, Friday & Saturday (12 hour shifts ~ if I can't handle 3 long shifts, my boss will cut me back to 2....I have intermittent FMLA and extended illness benefits to cover the shifts that I can't work). I am a nurse, and work with awesome people who will be there if I can't handle it. I guess that's why I'm trying to set my mind that I will be able to work and be normal throughout this. But, I will listen to my body, and if I can't do this, I will cut back as necessary.
vmarie ~ lots of water and exercise seem to be what I keep hearing the most to help alleviate the symptoms. I cannot imagine chasing around a two year old and four year old during this. My daughter and her 2 year old live here temporarily, and he wears me out even when I'm NOT sick!!! He has been a wonderful distraction for me while going through this whole ordeal.
gramma23 ~ Please don't worry about scaring me... I feel I need to hear it all... Reading everyone's different experiences has helped soooo much. Both good and bad. I would rather know what might happen than not be prepared.
carolsue ~ can they not draw blood from your port? I haven't gotten that far and was hoping that all my 'sticks' would be through my port! I guess that's another question that I'll need to ask about....
Lady_Madonna ~ I think you're so right, it's the 'unknown' that is scaring me right now. I have really been blessed with excellent care so far, so I'm hoping for that to continue. As Writer said, her chemo days were kind of relaxing too....I've got my music, books and magazines ready to go!
Daisy ~ really sorry you've had such problems with your port. I have an old co-worker who had problems with hers when they first tried to access it....I believe she said it had 'flipped' and so they couldn't get the huber needle in the first time...not sure what they did to fix it.
sanaisa ~ It's great to hear from people with similar dx, and with you ahead of me, kind of gives me a 'what's in store' perspective. I guess I will be having rads after I'm done with the chemo as well (thought I'd get to skip that part, darnit) I am peri-menopausal, so I will be on Tamoxifen after all of this stuff is done and over with. Hoping to have a big chunk out of the way by the time my second grandchild is born in October!
Thanks to all! What amazing women I've had the privilege of meeting on here!!! I know I ramble on and on and on, but I have so many questions!
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janny99 -- you will come out of your first chemo and wonder why you worried! Just like your surgery, it is truly the unknown that made this hard. For me it was not knowing when and how hard the SEs would hit. I have my chemo on Wednesday; Sunday is my down day. It seems most of us get hit between days 4 and 7. The two days after chemo seem to be be good because of the steriods. You will soon find out what works for you. And yes, exercise and water, even when the water tastes like metal and you get tired just taking a shower, keep moving. I have one more to go (June 16!) and then on to herceptin for a year. My onc told me last week I'll be starting tamoxifen at the same time. But he said cake walk compared to the TCH combo. Good luck.
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Janny, sorry to meet you here, but glad you found us! My worse days are 3 and 4, but as they say - everyone is different. Hopefully, you will be one of those with NO problems! :-)
Daisy, they are definitely right about the lidocaine cream! I wasn't using it when I was going every 3 weeks, cause it wasn't that bad....but now that I am on a weekly schedule - I felt that was too often to put up with dreading it, and the lidocaine is WONDERFUL. They have to use a 1" with me because evidently my port is deeper. They let one of the "trainees" put mine in last week, and she didn't get deep enough, so they had to push it deeper...and I still didn't even feel that. How do I spell relife? L I D O C A I N E
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Janny, for me, I could work pretty well (and exercise) the day after chemo, and even two days after, because of the steroids and Emend. If you count chemo day as 1, days 1-3 aren't bad, days 4-7 (sometimes 4-12 for me b/c of intestinal trouble) more of a challenge. I would need a nap days 3-6/7 but have been able to work. I've also kept up exercise, although longer walks (3-4 miles) on days 4-8 seemed to have made budding intestinal issues worse. Yesterday was day 5, a gorgeous day here in LA-- I walked about 3 miles and did okay. So far, knock on wood, the intestinal issues have been milder than after #4 and #5.
Anyway, it seems like you might want to consider changing your schedule-- chemo on Monday, work on Tuesday and maybe Wednesday, and consider taking off Thursday-Friday.
Although your mileage may vary-- you might have to get through one to see.
Good luck!
Colleen
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Janny and suepen and anyone else who this may help,
One thing I learned early on with my port is this. If the lab tech has difficulties getting the blood to flow from it, turn your head to the right and take deep breathes in from your nose and out thru your nose. Do this three or four times and it should get the blood flowing. Always worked for me. Good luck and prayers to all
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Thanks Laurie, We've tried everything - raising my hands above my head and waving them about, standing up, deep breaths - you name it. It's only happended a couple of times. Last herceptin tx, they didn't want blood and it to bleed straight away. I think it has to do with how they insert the needle. Really depends on the nurse. Anyway, with only the herceptin now hopefully they won't take it very often.
Sue
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Janny -- They always give me a choice for blood draws whether to use the port or not. They've never had any trouble drawing blood through the port (knock on wood), but for me using the port isn't always the most comfortable thing in the world. Even though it doesn't hurt when they put in the needle (thanks to the Lidocaine), it's sometimes sore afterwards. Having it accessed week after week, it was starting to look a little bruised, too. I've been a very happy camper since discovering that the Lidocaine was every bit as effective for having blood draws from my arm. I don't even feel the needle stick, and there's no soreness at all afterwards. Of course I'll never completely trust my veins, so I'll keep numbing the port anyway just in case my veins decide not to cooperate.0
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I agree with others about the days that were bad. I always had mine on Wed. and I was so sick on Sunday. the first couple of days were good for me but by Friday evening I was a little queasy and then on Sat. I was not great but could do most of my activities. Sunday I was so sick I could barely hold my head up. If you can get some of those barf bags from chemo center do get them. It saved my bed a few times when I couldn't get to the bathroom. Yes you will have to see how you react and if you can get the good meds you may be fine. I was really tired after Sunday of being sick and it took me a couple of weeks to get going again but distraction is the best thing for pain or illness I think. I have fibromyalgia and I know distraction is the best way to get through a painful time. I do think this is why being on this site has helped so much because I think of others too not just myself. If a white count is bad you may have to stay home for fear of catching something. I know a young woman at my chemo center was planning on going to something and her white count was too low and they told her not to go. She said she was anyway and they warned her she might have something really bad but I never saw her after that because she took her treatment on a different day. I always wondered if she went and if she got sick. funny how things go through our minds. I always got my Neulasta shot the day after treatment and by Friday I was in pain from it. Bone pain and back spasms. there again I have fibro and arthritis so I am not sure if it was just me or not. We tried Neupogen but you have to have several shots of that because it is not as strong. Some took extra saline on the day after chemo when they went in for the Neulasta. I did once but only because I was so sick but it did help. I am post TC since Nov 2008 and Herceptin since July 2009. I did a trial med for five days but was so sick I could not eat or drink anything. others are doing fine on it so I know it is just me.I have to keep my port indef. and that makes me sad but not because it hurts but it makes me feel like they think cancer will be back soon. I will not feel like a survivor until it is gone.
I also want to mention for those with little ones around. Keep the them away from the toilet you use because of the chemical that goes through you. I was warned about this but I had no little ones. We do have 2 bathrooms so I used one in my bedroom. You might ask about this but it does make sense. I hope all goes well for those just starting. I can't say this enough but get the water down you or anything you can drink. I loved coffee but not when I was on chemo. My taste changed so much and even the well water I love was nasty. Just drink it and don't think about it you have to do it. different things work for different people.
Carolyn
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Thank you all for the informative talk regarding your ports; I had mine placed on Friday. So far, most of the "pain" has subsided, but I do have mild pain in my r. bicep. Weird, huh? They had difficulty with initial IV access, after the 4th try, finally success. I think it took a toll on my arm. After this experience (usually, you can hit my veins in the dark!) I'm thankful for the port!
I'm pretty anxious about beginning chemo; my chemo journey begins June 11th. The placement of the port was the "no turning back" point. It made it final...chemo was around the corner; whether I was prepared or not! I feel like my biggest battle is going to be tackling one day at a time, and not looking too far ahead. Learning to live in the moment...see, I'm always the one who's SO prepared. The one who has everything figured out...NOT NOW. BC changed everything. Anxiety, and fear of the unknown are by far, worse than the known; this was SO true of my bmx (I'm alittle over 3wks post-op). Can I possible read one more book or article on how to prepare myself for chemo...what I really want is comfort before I enter the unknown...comfort to know it's going to be okay...comfort in listening to others who have walked this journey before and stand proud...comfort in knowing I'm not alone.
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GAgirl01 - The first day is the scariest, but after that you will get into a routine and it will go by more quickly than you think (although never quickly enough!).
I think your plan of living in the moment is a good one.
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Hi GAgirl, I will begin my chemo on June 11 too, so I guess we will be traveling together. I'm still not sure which chemo I will be on. Originally my Oncologist wanted me on TC, but I have heard such bad things about side effects that I am seeing if there is another one that will be as effective. So many choices, so many decisions, BIG ones. I bet you know how I feel. I feel like Dorie in Looking for Nemo, quite overwhelmed, at times confused. then I "keep on swimmin', keep on swimmin'"! I'll be thinking of you in Nashville while I'm going through similar things up here in NYC. Good luck! Are you from Georgia? Or does GA stand for something totally different? I was born in Georgia!
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Welcome to the new ladies joining this board.
I want to echo what everyone else has said about chemo. My first two rounds have been on Mondays, and Thursdays and Fridays of that week have been the worst. I am very tired and want to spend the day napping on the couch. I have been very fortunate and have had no nausea, no appetite either but no nausea. I am very thin so I need to keep my calorie intake up, and that can be difficult.
My port hasn't been too bad, though I am very aware of it and protect it when my children aggressively hug me. I had chemo the same day it was put in, so the day was pretty sedate. I never even had to take any pain meds for it.
My third infusion is tomorrow, and then I'll be halfway done!
I understand how overwhelming this talk of chemo can be. It is so weird thinking it in terms of yourself. It seems so surreal. I myself was diagnosed on a Thursday and started chemo the following Monday. I was so happy to be doing something to defeat my invader, but it gave me no time to process it all before jumping in.
I am so glad we all found this group. It's a wonderful bunch of women with so much experience and knowledge. Each woman here is a blessing to us as we find our way.
Dawn
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Dawn~ I'm not sure whether to say "yay" or "I'm so sorry" for the fact that your starting chemo on June 11th just like me. We'll have to stay up with each other through this and encourage each other as the treatments go along. I too am undecided on treatment. I am going for additional opinions tomorrow. My MO recommends TCHx6@3wks w/Herceptin 1yr. I'm not convinced yet, but the ER-/PR-, HER2+++ seems to be pushing it that way. The choices are so difficult to make, how can we be sure? Not sure we can be...I'll be keeping you in my prayers as you too have to make this difficult decision. BTW- I too was born in GA! Once a peach...always a peach!
DesignerMom~I couldnt help but notice you also are ER-/PR-, HER2+++. Did this play a major role in your MO's recommendation for TCHx6? Were you offered TC or any other regimens? Are you working throughout? I am going to try; I'm a surgical nurse, and I work only 3 days a week. I will have to really see which days are my worst and schedule myself around those days. How are you feeling now that you have had a chance to "know" the patterns of chemo? Does the nausea relax with time or only increase? So sorry to pick your brain so hard...can you tell I'm anxious :0} I know everyone's chemo journey is different...lacing up the shoes is quite a challenge! Ready or not...here I go!~
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GAgirl and DesignerMom - welcome to the club noone wants to be part of. I am sorry you have to be here, but glad you found us. Chemo, like everything else is very personal, and can be different for everyone, so try to go into it believeing you will be one of the lucky ones with no SE's and maybe you will be! If not, know we are always here for you - to help you, to cheer you on, and to listen when you want to scream and cry. There are excellent resources here no matter what chemo you are on. Bless our vets.....and bless us, as we are vets of a different kind of war!
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Gin52~ Am I reading this correctly...are you from M'Boro?? That's only 20min. from me! Wow...what a small world. Thank you for the encouragement...I know I will be on this board alot over the next 4-6 months; This battle began for me Mar. 21, 2010. and I won't ever stop fighting! Thank you for ALL of those who have battled ahead...what amazing, Strong women! You give me strength!!
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GAGirl: TCH is the standard treatment for node negative HER+ve cancer. We are very lucky that Herceptin is available to early bc patients. I've done my TCH x 6 and came through OK. I won't pretend it wasn't nasty but it's a must do in my opinion. I was floored when I was told I had to have chemo but I have known my onc for 7 years and totally trust him. It's the HER2 component which is most urgent to treat and try and prevent recurrence. Having herceptin will halve the chance of recurrence. I still have 10 herceptin treatments to go and I find I have no side effects except for a slight runny nose on the very odd occasion. It is also important to have a porta cath put in your chest - this makes the treatments so much easier.0
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Suepen~ Thank you for the honest answers. I've done alot of reading over the past several months and I too see that TCHx6 is the protocol (especially for HER2+++) It just stinks. Several converstations have happened in regards to TCH treatments weekly as opposed to every 3wks. Do you know anything about this? I think they were mistaken and it was TC weekly they were referring too. Anyway, after I gather all of the opinions, more than likely, it will be TCHx6 w/Hercp. I just need to know, for certain, I am doing what is best. I second the recommendation on the port. I had mine placed Friday. No turning back now...here's to hoping the Zofran & Phenegran work their miracles.
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