Stage III Chemo questions
hi everybody!!! so i'm new to this whole forum thing so please be patient with me. i'm single, 31, see below for dx specs. i got my dx 2/8/10, bilateral masectomy 3/22/10, preparing for chemo to start in may. up until now, i haven't really reached out to other survivors for support. the further i get into my treatment, the more i'm realizing i need that support...
right now i'm having hard time trying to decide on which clinical trial to pick. i have a choice between tc tac +- avastin study or ac -->t +- avastin study. any feedback would be GREATLY appreciated. thank you, thank you...
Comments
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Dear mcsushi;
Sorry to hear you are going through this but welcome to a wonderful site full of wonderful women who are extremely generous in their support and advice. I really don't have any advice for you reagrding your decision just to tell you that I had my first AC on March 29th and am heading into my second one tomorrow. My SEs were minimal. I am scheduled to have 4 AC followed by Taxol (# still to be determined) then rads then I will have my other breast removed. I am also IIIA so we're pretty much in the same boat. I would suggest you go into the March 2010 forum and you can see what the different women have experienced on the different treatment regimens.
You will find strength here and support. Heather
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Hi and welcome,
did 4FAC +4TH, then 25rads thenHx1year.
Chemo, whichever you decide is manageable and you can do it. Being part of study will give you opportunity to try something that is at the cutting edge.
Did you know also there is a forum for young survivors(under 40...sad to hear i was old at 44...lol,back then).
I am coming up to 5 years with no evidence of recurrence and living a full life. I wish the best for you and your treatment.Next year i will be %)...imagine...
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hi and glad you found this website
i was diagnosed in 2002 and was in a TAC clinical trial (phase III) my experience of being in a clinical trial was very positive; plus....costs were covered by the trial. back in 2002 they were testing combination chemo and i did get the TAC for 6 rounds. so far so good...i am 8 years out. you can do this; they will watch you and be sure to ask questions...etc. i did get into a breast cancer support group at the clinic i went to and really did looking forward to attending weekly meetings...helped me get the disease in perspective.
what ever you decide will work for you if they are offering you choices. talk with oncologists..get a second opinion if you need. talk to us too; we will help you. hang in there.....
diana50
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Hi mcsushi. I wasn't able to participate in any trials (my her2+ status kept me out of the only available one here at the time), so I'm afraid I don't have any experience with those, but I wanted to welcome you anyway. I did 4 AC + 12 TH - just finished up last week. AC was much rougher, for me, than Taxol, but it was all managable. I can only echo the advice of others - ask lots of questions and get a second opinion if you have a bit of doubt. Then trust in the treatment and come here whenever you need a shoulder to lean on or friends to vent to who understand. Good luck!
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Hi mcsushi! I have no words of wisdom on the chemo trials, but I wanted to welcome you to the boards. I'm glad you are coming here for support...our stage 3 forum is an awesome group of women. We'll help you get through this
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Sorry you've had to come here, but welcome - you will find plenty support. I too was a little apprehensive about talking to other survivors, but it does help. And...... to be honest I don't think I could have gotten through it all without the support of others who have been through the same things, physically and emotionally.
I was offered the AC + T w/Avastin trial. What I liked about being in the trial was that my trial nurse was extremely attentive and I got to visit with both the nurse and the onc before each chemo. If I had a question or needed help, one call to the trial nurse and I had a return call from either her or the onc within 10 minutes. I don't know much about TAC so I can't answer those questions. When I was unblinded I was not receiving Avastin (there is a thread on this board for the trial I was in).
I'm not going to say that chemo is a walk in the park, but will say that it's doable. We all react differently, some have very little SE's while others have it much worse. It's hard to say how you will react, but you can and will get through this. And......you are welcome to come here to help find answers, talk, vent, rant or cry - you will find that the women are very supportive and will try their best to answer your questions.
(((HUGS)))
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mcsushi......welcome to this wonderful sisterhood of women....the support is is inbelievable....I was in a clinical trial for chemo....but assignment to Tx was randomized....I got TAC x 6. I was a hard chemo for me, but it was doable and I got through it....and you will too.....good luck and keep us posted....HUGS, Karen
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Hello mcsushi. These ladies are SOO awesome, I can't tell you how much they've helped me and continue to do so. Can't give you much input on the clinical trial as I did not fit the prodical for any in my area. Did four rounds of dose dense A/C then 4 of Taxol. A/C was pretty hard, but I managed to get through it without missing or reducing a dose. Just started radiation last week. Hope all goes well for you on your journey. Keep us posted on how you are doing.
Sharon
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Welcome. I'm glad your considering a trial - the more data that's collected the better it will be for future ladies. I did a trial using Sutent which in the same family as Avastin but it's different enough that my SEs would not be comparable. The protocol was taxol/Sutent for 12 weeks followed by AC for 15 weeks. I'm assuming yours would be dose dense and every 2-3 weeks. I will say that AC was easier for me in terms of how I felt, but it did hit my bone marrow pretty hard and I had anemia. I actually stopped at 14 tx of AC because I needed another transfusion of red blood cells.
I'm wondering if the TAC protocol is taxotere (docetaxel) versus the AC-T which normally is taxol (paclitaxel). If the two protocols use the different taxanes then you may want to research the SEs of taxotere.
If you go to the search option and put in Avastin for a keyword you'll get plenty of results. There have been a lot of ladies who've had experience with it. Another option is to put a post in the Chemotherapy - Before, During and After forum and ask for advice. It's a very active forum.
Good luck with your decision. It's hard, but you'll figure out what is best for you.
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thank you everyone for the warm welcome and advice! so i've picked my poison, literally. i've decided on the AC -->T (taxol) +- avastin clinical trial. there's higher chance of receiving avastin in this study (as opposed to the TC/TAC +- avastin study) and also the option for dose dense. my port was put in tues morning. guess i just have a couple anxitey ridden weeks and it'll all begin... thanks again; you're all wonderful...
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Make sure you keep us up to date with how things are going. Unfortunately we have a wealth of knowledge now!
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Wishing you minimal SEs!!
Heck of a decision to make. Do want the devil with the blue horns or the purple horns? But it is all worth it in the end. It'll kick the cancer's butt and you'll be able to move on with life. Stay strong!
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hey everyone. so to update you, i got the call today that i'm all set to start chemo next thursday the 13th. i'm as ready as i'll ever be i guess. i feel physically and emotionally strong enough to tackle this next step and yet, i'm finding myself feeling very isolated; not sure why exactly. sometimes i feel isolated because i'm young. sometimes i feel isolated because of my staging. sometimes i feel isolated because i'm not really concerned about reconstruction or having babies or losing my hair or wigs. i just want to survive. i just wish i could connect with someone. I'm not looking for a twin, i guess i'm just looking for someone who understands me or at the very least, accepts me for me. i felt like you all gave me a warm welcome and good advice last time i guess i'm hoping you have some more advice now. keeping my fingers crossed...
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mcsushi. Welcome. I am somewhat new here too. I have found the stage III ladies to be so upbeat and positive! Good luck next week on your first chemo. That same day will be my second round. I am having TACx6 and then 30rads. I think this road we're traveling is long and filled with barriers, but we will make it through! I hope we both have a good experience next week!
Kelli
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Nobody gets it quite like we do, mcsushi. I remember talking to my friends about things and I would either see the glazed over look, or they would TRY to help...but they didn't know how to help. Then I would come here and vent about something and I would feel so much better after reading the responses. I wasn't alone, and what I was feeling was completely normal.
Good luck with your first chemo. Make sure you let us know how you are doing!
Bugs
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Good luck with your first Chemo!
I actually welcomed starting Chemo - firstly I thought the sooner I start, the sooner I would be done. But I also couldn't wait to zap any of the little buggers that were still lurking about.
I don't think you can prepare for it totally - the good news is that it is cumulative, so your first round shouldn't be too bad. You do learn as you go along - everyone gets a slightly different grab bag of SE's, so after round 1 you will be more prepared for round 2.
Just keep moving forward. The only way to get to the end is by starting at the beginning, and taking a step each day. Before you know it, it will be behind you.
I felt very alone too - it is so hard when something like this happens to you, and everyone else around you is just going about with their life. Remember, all of us here have been through it, we get it. So come here whenever you need to.
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A bunch of us did the AC/Taxol treatment so we're here to help and listen to you as you go through this process.
I had very thick eyebrows when I started chemo, in fact as soon as I knew I would do chemo I stopped plucking. I started losing my eyebrows once I was into Taxol and what was interesting to me is that I started losing them from the bottom and top moving inward. I was left with a sparse line a month after Taxol, but I never lost them completely.
Are you doing weekly Taxol?
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you are all the best. i find more support here (stage III ladies rock) than anywhere else. for that, i thank you again.
kelliga: sorry you have to be here but i'm more than happy to travel this road with you. i'm hoping we both have smooth days next week. i meet with my onco tues to find out whether or not i'll be dose dense or not. if i'm not, we'll be on the same sched pretty much.
bugs: you're right, nobody quite gets it like you do. it's sad and inspiring at the same time. that's the problem with those double edged swords...
kerrymac: at this point i can't wait to get started. i'm 6 wks post op and anxious to just get started with the next step, even if it is chemo.
clariceak:i think i'll stop plucking my eyebrows now!! i don't care if it looks like a caterpillar crawling across my forehead or not. i'm so over caring about things like that right now
and yes i am doing weekly taxol x12 -
day 2. so far, so good. minimum se's. thank god!!!
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Excellent! Often the first days of the first treatment can be the roughest.
Just watch out for the emotional effects of steroids. They can really mess with your head. I typically took less than recommended because I couldn't stand what they did to my moods - put me in very dark place. You may start to see a pattern to your se's and be able to predict when your good days will be. Or you may be one of the lucky ones who go through the whole treatment with minimal se's.
Glad you're doing well!
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Welcome...You will find so much great support here. Your young so you will handle the SE's (if you have any just fine) My se's came from the steroids so keep that in mind. You can always ask them to lower the decatron.
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Yeah, those steroids are nasty. Especially as you get further into treatment, they can mess with your emotions.
Glad to hear all is well though, You can do this!!
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besides the messed up emotions and mood swings are there other se's from the decadron i should be looking out for? still feeling pretty good overall. definitely fatigued today but i'm going to drag myself and the dog around the block for a little bit. too beautiful a day to waste. as always, thanks for all the support and advice!!!!!
~colleen
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I was able to drop steroids all together when I started Taxol. A few of the other gifts steroids have to offer is "moon" face. You'll know it when you see it and often they can keep you up all night. Not much fun when they are already playing havoc with your moods. One benefit is you can use this excess energy to clean house, finish uncompleted projects etc.
Glad to hear you're going outside despite not feeling your best. There is evidence that exercise can help you in many ways during chemo - including keeping your blood cells up.
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Colleen: Great to hear you are doing so well with your 1st treatment! Are you having your 2nd one on the 21st?
I just had my 1st chemo on the 11th.
Did anyone else have FEC x 3 and Taxotere x 3?
I came through it pretty well.. a little heartburn, flushed face & a bit of a headache and very, very sleepy.. could hardly keep my eyes open. I will be happy if the rest of the sessions go like that (crossing my fingers)!!
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Hi Jan,
i will be provably start my chemo in two weeks. I was given the same treatment as you, I know of two other that got the same all from Canada. It looks that there are some differences between Canada and the US. I will provably be following you since you have a head start over me,
Happy to hear that the first treatment wasn't so bad,
Daniela
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I did FEC-T too. Finished just over a year ago. If you have any questions, feel free to PM me.
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hey! i'm still feeling pretty good overall (nausea is gone, dry mouth is manageable, fuzzy head is a little clearer) but very, very rundown. i'm supposed to go back to work tomorrow morning and i'm not sure how good an idea that is but we'll see how it goes.
clariceak: my onco said once i move on to taxol i'll be done with the emend and the decadron. i think i'd actually welcome some excess energy at this point.
jan-m: my next tx is the 27th. i'm AC x4 @2wk then Tx12. glad you made it through your first tx well!!! sounds like the se's were about the same for both of us. when is your next?
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Hi..
Daniella, I am glad to have someone on here that is having the same treatment as myself! You will have to let us know when you are going to start chemo.. I would like to be here for you! You and Colleen will probably be having be having it around the same time. I hope yours goes as well as mine has!!
KerryMac, thank you.. you have helped me alot with your posts on other boards.. I know at some point I will take you up on your offer
I'll just ask you one quick question right now though.. how long did it take for your hair to fall out. My youngest daughter is having her highschool graduation May 28th and I'm wondering if I'm going to be there with hair or bair lol.. well not really bare, I am not that brave! Colleen, I'm glad you are doing so well! We must have had our first chemo about 1 day apart. I'm wondering why are your treatments only 2 weeks apart? I thought we needed a 3 week interval to recuperate and build up our blood counts? My next one is June 1st. Hope work for you tomorrow goes well.. let us know.. if your not to pooped!
You all take care!!
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Jan - my hair started falling out about 12-14 days after my first round. I cut it short before round #2, but if I hadn't, I still would have had enough to look "normal". So, I would think you will be OK.
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