August 2011 chemo, anyone w/ me?!

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    for breast cancer treatment, I mean

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  • Chava
    Chava Member Posts: 50
    edited August 2011

    Madismommy. You can always pull outmof the trial if you get put into that leg. My onc said he thinks they may modify the trial into just two legs instead of three buts haven't done it yet. Good luck. Also see if there is a previous group for TAC. I know there is a June AC+t group I have been reading there posts so I know what is up and coming.

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    VtEllen.... Here's what I was told, I'd be computerized into one of these 3 groups for treatment.....



    Group 1) TAC x6 every 3 weeks



    Group 2) TC x6 every 3 weeks



    OR



    Group 3) TC + avastin x6 every 3 weeks and than the remainder of 1 year of avastin every 3 weeks... Til August 2012......and than tamoxifen for 5 years



    Than a bunch of follow up tests, etc for TEN years.....



    OR I say NO to the trial and do TAC x6 every 3 weeks plus tamoxifen for 5 years.....which I'm leaning towards staying out of the trial at this point.....BUT, will it be some break through to help the future BC patients???? It's so hard..... Seriously, I just wanna do what I need to do and LIVE???

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  • edoyrest
    edoyrest Member Posts: 55
    edited August 2011

    Madismommy,

    If I had to make that decision I would opt for standard of care, by that I mean what the current standard practice is for treating your cancer.  Nice if that helps research in any way, but to prolong your treatment in the name of research seems unfair to me, and not to mention the side effects.  At least with your standard of care you'll be getting the best treatment known for treating your cancer.

    Eileen

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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011

    Madismommy -- I dunno about the Avistan....As you said yourself it's being pulled for BC treatment due to it's ineffectiveness for advanced or metastic breast cancer. I remember reading about it when I was on vacation in June:  http://www.cnn.com/2011/HEALTH/06/28/fda.avastin.appeal/index.html

    Ultimately it's your decision -- Say a quick prayer that you make the right decision and then go with your gut!

    Hugs, 

    Crystal

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    Thanks you guys for the support on the hair trauma!!! But it grows back...right?!?!

    Madismommy - I had my first AC last week (Thurs). I went in cocky and figured it wouldn't touch me (well, not quite that cocky!). The actual infusion was completely uneventful. My Mom and best friend were there, we just talked the whole time. I sucked on ice chips. Got home and felt sleepy so I took a nap. I woke up from my nap about 3 hours after my infusion was over and I felt sick as a dog. Headache, nausea, diarrhea. Didn't throw up but I could have; I consciously made myself not so I could keep the meds down. Called the on-call doctor and asked if I should be feeling so sick so soon. He said not usually but everyone is different. Took all my meds and upped the amount of Ativan as the doc suggested. Slept off and on throughout the night. Woke up Friday a bit better but still queasy. Kept taking the meds as I was supposed to. Drove myself and my Mom to get my Neulasta shot. They ended up giving me fluids there because I told them I had diarrhea. I didn't really think I needed fluids because I was drinking so much water. But the fluids made me feel better. Friday night I drove and picked up my bro from the airport. I had no bone pain from the Neulasta. Saturday, Sunday, Monday I was ok. Didn't feel like myself but I wasn't bed bound. I walked the dogs and did yoga each day. Tuesday I felt like myself again. The only thing that is lingering is my distaste for food. Hope that helps! 

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    And if it helps, I don't think I would do the trial - but that's me.

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  • Ybrooker1
    Ybrooker1 Member Posts: 41
    edited August 2011

    Good morning ladies! On my way to the chemo chair for my 2nd AC treatment. Not feeling as anxious as I was for the 1st one....that's a relief! Praying I feel the same way when I actually get there!!!! Here's hoping & praying for a smooth tx and SE free day for everyone

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    Good luck Yvette!!! Hoping and praying for the same for you!!!

    Question for guys - Are you paying a copay when you get your chemo? When I went for my first treatment last week, they charged me a $30 copay for an office visit. I talked to my insurance and they said it should be considered "treatment" and not an "office visit". I have to go back today for my bloodwork and I wonder if I have to pay again. If I have to keep paying a copay, that's $120 a month! 

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    Smooth sailing, I hope Ybrooker1 ! I wouldn't do the trial either, Madismommy. I can say that now that everyone else has! Don't you have youngish kids at home? Do the current best recommendation. Start as soon as you can, so you can be done by xmas? You don't need to prolong your treatment.....

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    No copay here. Just wandered wobbly back in. Definitely all part of the treatment package. So, I get hungry, but eating isn't as fun is it? My mouth just feels so rough inside and metallicy.

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    Thank you, vtEllen, for the info. I'm going in today and ask them about the copay business. Last week I was like "I am PAYING to get chemo?!" hahahha.

    Eating is so not as fun. I pretty much only like pb toast. 

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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011

    Kasi: Unfortunately, I DO have to pay a co-pay for each chemo visit at $25 a pop. Yikes! However, for radiation -- there is no co-pay and covered at 100%.

    My center has free parking for radiation treatments (since it's every day) and they will be starting free parking for chemo on August 15th. Drats - I had to pay parking yesterday, but at least it will be free for my 2nd treatment and going forward when I go back on August 31st.  I'll be paying $6 in parking (patient rate)  today for a quick Neulastat shot.

    YBrooker -- Good luck today! I will call when I get to the center to see if you are still there hon!!

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  • ukgirl
    ukgirl Member Posts: 9
    edited August 2011

    Had my first dose of chemo last wednesday. Today is the first day i feel "normal" ( talk to my family about that) but is has been doable. Am doing adriamycin/cytoxan x4 with neulesta shots then taxol x4 rounds. The copays are a little ridiculous $35.00 every time i go to the office. Lucky parking is free. Any advice about wigs, my hair is starting to go.

    Good luck to everyone.

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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011
    UKgirl :  try http://crickettsanswer.startlogic.com/id4.html -- they will send a free synthetic wig of your choice if you send in their enrollment packet (short 2 pages). They let you choose two wigs from www.wigs.com and they pick one and pay for it for free! Check it out :o)  I just was approved for a free wig and it's been ordered already. Wink
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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    Thanks for your input everyone. Geesh, I'm sorry Chrys23, I feel foolish for complaining since I do have free parking. WTH? Paying for parking for chemo just seems so wrong.

    UKgirl - You and I are doing the same chemo regimen and I started just a day after you (last Thurs). I'm glad you are feeling a bit more "normal," although that is now a relative term. Ha! I'm sorry your hair is starting to go. I am waiting for mine. I have an appt next Friday at the hair replacement place and they are going to buzz it off for me and get my wig all spruced up. Frig. I've already said this today, but I love my hair. I just said to my Mom "This coming weekend is my last weekend with hair." And I just noticed that we have the same diagnosis date. 

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  • Ipswichmom
    Ipswichmom Member Posts: 3
    edited August 2011

    Yesterday was my first AC and overall I feel OK. A little nauseated (but well controlled with my meds) and a little loopy (also from my meds). Gave myself the Neulasta shot this morning and was so nervous despite being a nurse and having given hundreds of shots: to my knowledge, none had ever cost so much! I have the other shot for two weeks from now sealed into the butter drawer in my fridge with tape and a sign saying "Do not touch!".



    I agree with the positive thoughts about chemo minimizing side effects and have been doing a meditation on preparing for chemo which I think has helped me to view it as my choice and a gift to help heal my body. I am trained as a midwife so I really believe the mind-body connection stuff. Who knows, though? I'm one day out from my first chemo.



    I take courage and comfort reading all of your postings and am grateful to have this community. Best of luck to everyone and hoping we all cruise through this together with relative ease.

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Thanks so much everyone for your opinions and support with my decision.... honestly, no one can give me the guidance better than all of you going through all of this too.

     I am declining the trial.... i originally told them i would seriously think about it, and i have.  and i told them that "my main concern is my 8 year old daughter....and protecting her against all this in the future"  BUT... what i was forgetting is my 8 year old daughter NOW and OUR future together.... she needs her mommy and i need to see her grow up.  I can't "chance" that with some trial that may or may not be good... and may or may not even help research.... and may or may not hurt me with heart problems, heart failure, leukemia, etc. in the future....

     TAC x 6 for me!!!!!!    as always, you girls are the best!!!  Thanks for all your honesty and opinions....   :o)  

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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011

    Just leaving Philly now - got my Neulasta shot, which DID NOT hurt! Yay!

    Had the added benefit of meeting Yvette (Ybrooker1) while she was recieving her 2nd treatment

    It was so nice to meet you, Yvette - along with your husband and friend!



    Had some lunch too - it's a nice day out! :)

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  • michelleo13
    michelleo13 Member Posts: 342
    edited August 2011

    Busy day on here today!



    Day 4 post first A/C injection and I am sooooo tired today, I feel like I've just crashed. I haven't slept great the last couple of nights. I've just been laying around doing nothing all day but can't sleep! Hope this passes soon, it's awful! Mind you, I've otherwise been very fortunate as far as S/E go. Other than some intermittent nausea, today is the first day I haven't felt relatively normal.



    Madismommy, OMG $5,000 a shot for Neulasta. I saw the claim go through my insurance and it was $2,800 per shot. Interesting that there would be such a difference between Canada and the US.



    LindaF, thanks for the advice on the hair shaving. I've been wondering about that. I had mine cut short last week so I think I'll just leave it at that until it falls out.



    Welcome Diana! Hope everything went well today for you.



    Chrys, I didn't think I could self-administer the shot either, but it really wasn't all that bad. I injected into my stomach as there's more fatty tissue there! :)



    vtEllen, here's wishing you lots of WBC production. I was told to take my temperature twice daily and anything over 38.2 C, go immediately to emerg. SO far it's normal, but YIKES!



    Kasi and Madismommy, I hear you on the hair front. I'm not particulary in love with my hair but I still dread losing it! Had a funny email last night from a (male) friend from work who is balding. He said, look on the bright side at least your hair will grow back, unlike mine. Then, he emailed me a picture of his bald head. It made me laugh out loud!!



    Chrys, free parking! That's great. At our centre, it's $10 for anything over 2 hours, but oncology patients can buy a monthly pass for $35. I bought a monthly pass on Monday and I've already recouped my investment. Crazy, huh!



    Welcome ukgirl, we are on the same regimen. I started Monday. I'll add you to our master "roster".



    Ipswichmom, my biggest fear with self administering the Neulasta is that I'll spill it! That stuff is liquid gold!!



    Must go now, need to put my head down again.



    Don't forget to PM me your email address if you'd like a copy of the Aug 2011 master chemo list!

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    Well, my WBC is at 1300. Boooo. No fever but now I am paranoid and feeling kind of worn out. I didn't realize that it took a week or so for the Neulasta to kick in.

    Madismommy - Glad you came to a decision! Personally, I would have done the same thing.

    Michelle - Hope you feel better soon.

    Chrys & Yvette - So cool that you guys got to meet each other! 

    Hugs to all of you!!! 

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  • summergirl1
    summergirl1 Member Posts: 182
    edited August 2011

    Hi Guys, hope everyone is feeling good, and thanks for all the anniversary wishes, I had a great night thxs, 

    Michaela, I was told also to gargle with salt water or bread soda/water for the mouth sores, hope you have a better night tonight, Im not sure again which hospital you are going to Im in vincents, do you know if they will let you have someone with you while you are having your chemo, I cant imagine being by myself.

    Michello13. I must check out that site, I feel as though my heart is coming out my mouth with this anxiety. and  really need something to relax me, thxs , must chat on FB .

    Leighsa , I agree this group is growing so fast , cant keep up , lol 

    well headin off now , so wishing Good Luck to ALL my fellow warriors. 

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  • Robyn6463
    Robyn6463 Member Posts: 167
    edited August 2011

    I'm so sorry about your co-pays ladies. I don't know if mine will apply or not, but it's only $15 and I'm only up for 4 treatments, so that's not so bad. Of course, if it applies to radiation it'll add up fast! I'm much more concerned financially about running out of sick time. I've got about three weeks left, so I'm trying to work when I can, but I'm so overwhelmed by everything I don't feel terribly productive.My kids and friends are taking me to treatments, so my husband can keep putting in some overtime...

    I'm really sorry about the hair loss, too ladies. Kasi and Madismommy you do both have awesome hair! Mine's not nearly as pretty, it's thin, but I'm still very upset. It's been shoulder length for years, and I just had a pixie cut this afternoon. I'm actually enjoying it...for a week or so! But I'm really afraid I'll look like Uncle Chester before this is all through. I can't wait for it to grow back and it hasn't even fallen out yet!  

    Up for first treatment in the morning! Best friend is coming along for the fun! Yay for free parking! 

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  • capinva
    capinva Member Posts: 138
    edited August 2011

    Maddiesmom my insurance denied the drug too. So my dr recommended adrimycin & cytoxan. Wasn't,t crazy about ant of the side effects but also wanted someing thAT has been around. Good luck with yr decision

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    Where are you going for treatment, Robyn? Best of luck where ever it is, be thinking of you tomorrow.

    On the hair front, and also stupid things people say-  At my blood work appt yesterday, my nurse started going on about my hair- "Is your hair naturally curly?!" " I love your hair!" and then the other nurse chimed in also. I said " yes it is natural and  it's probably going to start falling out next week ..." They both looked like that was the most awful news. I mean, hello! I am a cancer patient at an oncologist's office. Should there not be some protocal in place- like, NEVER mention the patient's hair? Too funny if you ask me...

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    HAHAHAHA, vtEllen! Don't you love the things people say? I can't believe they even commented on your hair! My PS, whom I do love dearly and has done a great job, did tell me that my boobs were "perfect" prior to my bilateral. Yes, thank you, I know they are perfect and now I have to get them cut off. 

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    And Robyn - thank you so much for the compliment on my hair!

    I found out that I will have to pay $30 every week during my chemo because I see the doc or NP each time so that's an "office visit." This treatment stuff cannot be over fast enough. 

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  • capinva
    capinva Member Posts: 138
    edited August 2011

    Had my first A/C today. Went without a hitch, came home & took nap. Woke up feeling loopy but still pushing water and ate more crackers. The urine is starting to clear too :) hope everyone gets thru today with no s/e or minimal

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  • Robyn6463
    Robyn6463 Member Posts: 167
    edited August 2011

    Hi VtEllen, My treatment will be at the SVMC Cancer Center in Bennington. Where are you being ttreated? I worked in the accounting office at SVMC from 1990 - 2001, and all 4 of my kids were born there, so it's very comfortable and familiar for me. I know a couple of their office staff. For a rural community, it's a very nice hospital. With free parking! And I love all of my docs so far! The cancer center hasn't been there all that long, when my Mom was sick in 1989 we had to travel between Latham, NY, and Dartmouth, NH for her surgeries and treatments.

    I have a fat face (okay I'm a little overweight everywhere), so I thought the pixie cut would make me look fatter, but it's actually pretty flattering. My 17 yo son seems to like it! The ultimate compliment! But alas, it'll be a short-lived style (no pun intended). At least I'll know what to do when it starts to grow back. 

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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011

    I'm still having quesiness issues. Ugh... Ate an organic grilled chicken sandwich with spinach at the cancer center,  (and snuck a few bites of cake) and a bottle of water, but then I get very mild quesiness and my tummy and head feel out of sorts. Nothing major, but just weird....Seems like I can't eat too heavy.    I was queasy on my way down to Philly too, in the car and had to munch on organic asiago cheese crackers and water and take Ativan for the nausea.

    If this is the worst of it, then I can't complain at all, can I???  Sealed

    Capinva: I'm glad your first round is over with -- was it what you thought? Glad you got to rest too!

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