Starting Chemo Feb 2010?

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  • kshep
    kshep Member Posts: 49
    edited March 2010
    burley- if you figure out what that taste is let me know! Water is a huge chore this time around.
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  • faithfulc
    faithfulc Member Posts: 284
    edited March 2010

    Burley, good luck on your new job tomorrow.

    Burley/kship, I had an issue with water too after round 2 - just could not take it any more, but round 3 seems better - I can tolerate water more this time.  I was told that Gingerale could help but I haven't tried.  Hope you stay dehydrated!!

    In mid January I was to get my Oncotype score, but the lab sent the wrong sample to Gemonic.  After some shuffling (they sent an incomplete sample the second time, I was told) and we just said forget it.  Guess what - today I was checking my insurance records and saw that my insurance company paid for the test back in early Feb.  The onc who ordered it (she was my 2nd opinion) then faxed the results to the onc I'm seeing.  No one bothered to tell me that it came back - a month and a half ago!

    It's being faxed to my home today - I still don't know the score so guess I'll find out tonight when I get back from work.  Although it's kind of a moot point now (I'm already half way through my TC chemo of 6 rounds) I'm still nervous.

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  • CinD
    CinD Member Posts: 163
    edited March 2010

    I just caught the tail end of a lecture "Natural Defenses in Fighting Cancer" by Dr. David Servan-Schreiber on UCTV.  If anyone with that channel is interested, it is being rebroadcast overnight at 3AM EST. Also, the UCTV website shows an option to play the video, but it wouldn't work on my computer. Based on recommendations here, I ordered his book, "Anticancer: A New Way of Life," a few days ago. It feels good to finally look toward the future since we become mired in the diagnosis and treatment phase for so long. Even though I've still got some stuff to get done, I still have to hold on to the thought of the future and this part being in the past. Not all of you, just the bad stuff.

    The hot flashes have been toned down significantly for the past three days. They're actually letting me sleep now. Eating hot food, wearing a headcovering or dressing warmly still bring them on, just not as often or as pronounced.

    I know what all of you mean about water being unappealing. I'm burned out on it too. I'm drinking more iced tea now. Sometimes I add a little Crystal Light flavoring to my water for a little zing, usually lemonade or strawberry-kiwi.  I might pickup some KoolAid next time I'm shopping -- haven't had it in years but liked it as a kid, and I like that you control the amount of sugar, if any.

    Countrystars, welcome. I have cocker spaniels too. They've kept me halfway sane throughout all of this.

    MomWhoFan, I'm sorry you've had so many problems. I hope everything clears up soon. I've seen "Here Comes The Sun" as a sort of theme song for getting thru this winter.

    I hope everyone is feeling good and having very few side effects. We can almost cross March off the calendar now!  I wish you well.

    Cindy

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  • faithfulc
    faithfulc Member Posts: 284
    edited March 2010

    Cindy, did you do Oncotype? 

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  • CinD
    CinD Member Posts: 163
    edited March 2010

    Faithfulc, I got the Oncotype DX and was surprised it came back with a low recurrence score of 11 with an average rate of distant recurrence of 8%. I thought being a grade 3 with one involved node would make it much higher, but my oncologist says it happens occasionally. I bet you're shocked to find yours came back a month and a half ago. They're just starting to extend it to those of us with some node involvement, but that's supposedly for postmenopausal women with 1-3 nodes. It's easy to say try not to be nervous, but it's harder to do. I hope it comes back good for you!

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  • swiftbird
    swiftbird Member Posts: 177
    edited March 2010

    MomWhoFan, I am sitting in airport waiting for a flight checking the boards and busted out laughing about getting stock in your drug company. I feel same about Neulasta. One one hand, I'm thinking, what a rip, but on other hand, it helps. So torn. But funny! I am thinking same of Miralax too. I've been going through bottles of it. haha

    Burley, I feel the same way about water. I choke it down but it has to be VERY ice cold.  I am keeping Gatorade in business ~ orange gatorade ONLY.  Others just taste yucky; absolutely no logic.  I have also discovered two things that taste good with my jacked up taste buds (I'm on taxotere and carboplatin, ugh)... Boost (strawberry or choclate...so sweet, yum) and frozen yogurt (it helps with digestion right??)  ;-)

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  • burley
    burley Member Posts: 631
    edited March 2010

    Today I've had coffee, iced coffee and Powerade...yet to drink any water, and it's already 5pm.  Terrible, I know.  I need to find something I can add to water to make it tolerable-I should hit up the Crystal Light aisle I guess.

    First day on the job went well-nice lady, very informed on breast cancer and totally willing to work around all my junk.  It's going to take me a month to dig her out of the mess she calls an office!  Should be a good mental exercise everyday for my chemo brain...

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  • faithfulc
    faithfulc Member Posts: 284
    edited March 2010

    Oncotype: 9.  Recurrence risk: 7%

    Although it does say this applies to post menopausal and node negative patients, neither of which would fit me.

    Wonder if I could talk my onc into doing just 4 treatments instead of 6.  Or should I?  With 3 nodes (2 sentinel and one auxiliary) perhaps I should stick with 6 treatments?

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  • CinD
    CinD Member Posts: 163
    edited March 2010

    Faithfulc, that's great your score is so low. My feeling is that we can use the test as a guide, but because we don't fit it absolutely, we can't place complete faith in it. Whether you should try to go from 6 to 4 is a tough decision. It will be interesting to see what your onc says after seeing your report. My onc told me if my score had come back high, he would have recommended 8 treatments instead of the 4 that I'm getting. Sometimes I've wondered if 4 is enough since I was grade 3 with 1 node. But, Tamoxifen is supposed to be very beneficial to those of us with low scores.

    Kim, I'm glad the job went well today. That's great they are good working around your health issues. 

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  • faithfulc
    faithfulc Member Posts: 284
    edited March 2010

    Cindy, I'll probably stick with 6.  So far I'm having very little SE from TC.  Plus as my onc explained to me before, chemo can only work IF the rogue cancer cell(s) are actively growing, as chemo only targets fast growing cells.  Not all cancers grow fast at the same time, so any one chemo treatment may not be effective to the cancer cell that is resting and not growing at that time.  So the multiple treatments are done in the hope that we catch all the bad sells growing rapidly at DIFFERENT times.  I remember my onc said repeatedly to me that he does not think 4 treatments would be enough for me.  Oh well.  I might still ask...

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  • me2u
    me2u Member Posts: 52
    edited March 2010

    Today's chemo got deferred to saturday cos my white blood cells are low. cant wait to finish my treatments.....had a mini booster jab and another tomorrow.

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  • teemee
    teemee Member Posts: 122
    edited March 2010

    The writing about Oncotype scores and treatments is very interesting to read. My score is 25, pretty high, and I fit the boxes: premenopausal with no node involvement. I asked my onc last week if she would ever 'up' my chemo, because I met a woman whose doc told her on tx #4 that he decided to give her 6 (that last minute thing should just not be allowed!). Anyway, she is adamant that I only need TC x 4. Maybe it's the lack of node involvement that's letting me off 'easy,' but I know there's a lot of factors the oncs take into consideration. I wonder also, why the 4 vs 6 vs 8.

    On another note, this February/March girl is finally on her way. Day 7 after tx #1. Honestly, I hate the way I feel, but my new mantra is 'doable, temporary.' I can't move much without a lot of nausea. If I take compazine for the nausea I sleep all day. Trying to figure out how to get a little exercise in, plus I need to be at my new job starting Friday so a little worried. I have a dr appt tomorrow, going to ask if the nausea is a constant for the next several months.

    Hugs to all,

    Toni

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  • retrievermom
    retrievermom Member Posts: 522
    edited March 2010

    Teemee:  Oh, I hope your nausea won't be constant.  One of my anti-nausea drugs made me feel worse, so I backed off it and just used the zofran.  Ginger is good, too, as others have mentioned.  Ask if the compazine is making things worse; maybe another drug would be better for you.

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  • makmak
    makmak Member Posts: 632
    edited March 2010

    A suggestion I got and is working for me for nausea:  Whey Protein shakes in the morning... the protein is apparently supposed to help with nausea much more than the carbs I was eating all day.. and keeps the munchies at bay.. I can't take nausea meds as they make me really sick..

    So I am sitting at treatment.. had a very scary start. The nurse couldn't get the port to work..thought it had FLIPPED.. luckily another nurse got it..said she was just a bit off to the side.. Thank GOD.. I was thinking surgery and almost passed out..  But then it all worked.. blood counts still OK.. so my last treatment of cycle number 2..  No count downs for me.. all depends on my CT scan in a month or so... crossing my fingers..

    PS I just read the Anticancer - a way of life.. LOVED that book.. very inspirational and action oriented..just what I needed!! now reading "50 things you should do when you have cancer".. pretty good one too..

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  • ariesrottie
    ariesrottie Member Posts: 260
    edited March 2010

    Teemee- I too was a 25 on my oncotest. I have to 4 T/C. I had no node involvement... I have 2 down and 2 more to go, with #3 on next Thursday... Not looking forward to it... I am down about 4-6 days after treatment and then back to normal for the next week and 1/2. This time my levels were a little low but they wanted me to rest and eat lots of protein... So that is what I am going to do.. I have been resting....Drinking a lot of water and eating protein...

    Me2u- I'm sorry that your treatment was delayed... I know how you must feel... Rest...... Drink....and try to eat well.... I know we need to get on with this treatment so that it is behind us.... Good Luck....In my prayers..

    Faithfulc--- Listen to your onco.. They know what is best for us.... {{{{{{HUGS}}}}}

    Keep the failth everyone......

    Donna

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  • burley
    burley Member Posts: 631
    edited March 2010

    You know, I've never asked what my score is/was.  I'm not sure it would have mattered to me in going with chemo or not-I wanted chemo-I want this crap zapped and eradicated!

    I'm also in a January Mastectomy group, and most of them are not having chemo-completely shocked me at first.  Many of them based their decision off their score.  I just couldn't personally stand even the smallest amount of risk.

    When my onc presented me with my treatment options, I said just give it all to me-I want the highest dose possible, regardless of the side effects and how long it would be.  And I'm still comfortable with my decision.

    By the way...day 6 after my 3rd treatment, and my eyelashes are coming out.  Sigh.  I was really hoping to hang on to them!  I'm seriously bummed.

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  • faithfulc
    faithfulc Member Posts: 284
    edited April 2010

    Donna, onc called back.  No change of plans.  Still 6 rounds of TC.  So I'm still at halfway point.  Kind of mentally prepared for that anyway since that was the plan to begin with.  :)  I think of my 10 and 8 year olds and definitely want to be around as long as possible.  What's another 3 rounds of TC compared to a better chance of watching my kids grow?  (Of course I have to believe that chemo does give me a better chance, which I do.)  If I have to endure their adolescent years (in a few years) then I'm entitled to life after that, right?

    Burley, sorry to hear about the lashes.  Hugs!

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  • retrievermom
    retrievermom Member Posts: 522
    edited April 2010

    faithful:  Yes!  Those kids are going to give you grief in their teens, and you will be around to get a kick out of it.  Give that bc a kick in the pants--out a here!  And there will be weddings and grandbabies, too.

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  • riley702
    riley702 Member Posts: 1,600
    edited April 2010

    Haven't checked in for awhile. About two weeks ago, I got really run-down. I had a Hg of 8.3, so had to have a transfusion. The night before, I started vomiting and couldn't even keep down water. The hospital took one look at me and said I wasn't going anywhere after the transfusion (2 units), and kept me from Wed. to Sat. on an IV. They think I had some GI bug on top of the anemia. But on the bright side, I got my Restoril dose upped from 15 mg to 30 mg since I would wake up every hour or two on the lower dose. I had initially been given Ambien and loved the sleep, but only took it twice since I managed to have a minor car wreck the next day both times I took it! I was just a bit spacey, a little off with the reaction times, and my memory was crap. I flushed the rest of the bottle and asked for something else.

    The other good thing was getting an anti-depressant (Lexapro). It took about a week to kick in, but I cannot believe the change! You don't realize how low you feel until you stop feeling low, do you? When I was first hospitalized, the next morning, my doc actually chastised me for being 'mean' to the nurses. (Not wanting the lights on, not wanting to eat since water was making me puke - yeah, so 'mean'!). I told him, "Yeah, I'm a bitch when I feel like shit. Do something to make me feel better." He didn't like that, but sent in a gastroenterology guy who gave me Marinol for appetite and nausea, and upped my Restoril and gave me Lexapro. I could kiss that man. That was my turnaround point.

    I was hospitalized the day after infusion and spent my 'week off' recuperating, so I didn't actually miss any infusions. I get Xeloda, Taxotere and Avastin week one, Taxotere and Xeloda week 2 and week 3 off. I just started cycle 3 of 4 on Tuesday, then after cycle 4, I'll take two weeks off for retesting (and my vacation that I AM going on, damn it!), then I'll start another 4 cycles of Avastin, Adriamycin and Cytoxan. Whew.

    Some of my SE's are sweaty feet and cracked skin on my hands (not helped by my sudden surge of energy inspiring me to actually go out and prune the hedges!). I get Decadron the days before, of, and after infusions, and I hate it. It makes my voice high and scratchy, I eat constantly, I've gained 10 pounds, and it interferes with my sleep. But other than that, I'm peachy! Wink Hope everyone else is doing well, also.

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  • ariesrottie
    ariesrottie Member Posts: 260
    edited April 2010

    BURLEY- My heart goes out to you... My hair loss was the hardest for me...I am up for round 3 of T/C next Thursday and keep hoping my brows and lases hold on... I guess I wrong... Oh you need a {{{{HUG}}}}}. I keep saying courage we can do this.. Look what we have been through. already... Just another kick to the ground... But get up and start all over again.....

    Faithfulc---- That's what we are doing this for our kid, spouses, and OUR LIFE...... Remember that... What ever it takes....Hang in there you are half way through like I am....I know its hard but we can do it,,,{{HUGS}}

    Riley702- Sorry to hear about your SE but thank goodness things are back on track.... Hang in there with courage and strength.

    That goes for everyone... You know when I started this chemo stuff. I was yeah I can never not go back to work...Well Never say Never.... I feel great some days and others give my only a couple of hours.... and I need to rest.... So lesson learned Never say never...Sometimes you make plans and God laughs.....

    Hugs,

    Donna

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  • Iamstronger
    Iamstronger Member Posts: 378
    edited April 2010

    Hi All,

    I had round 3 yesterday.  I was supposed to have it monday, but they didn't have the Avastin (Beth Study) drug.  I can't believe how annoyed i was.  I think that, like all of us,  I just want this all done and behind me-YESTERDAY!   I am now at the halfway point!!  YEAH YEAH YEAH

    riley702-what a round you had.  Sounds like you are doing better.  Glad you founds the Lexapro and that it is making you feel so much better.

    Burley-they never did an oncotype score on me because I was Her+.  Apparently the onc scores on those are always really high.  IN addition to that, my oncologist said there was no question as to whether or not i was getting chemo.

    Hope everyone is doing well and having little or no side effects.

    Verene

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  • writer
    writer Member Posts: 208
    edited April 2010

    Riley, love how you can list the miseries and still be peachy! That's our life, isn't it! Burley, I obsess over my brows and lashes every morning and night when I'm brushing my teeth with Biotene toothpaste (which I now loathe)... I feel your pain. I've lost a bit (I'm day 11 after tx 3) but not so anyone but me would notice, but it's terribly distressing to see what's coming. 

    As for oncotype score, my oncologist never did it, because they considered it pointless. Because my tumor was grade 3/3/3 and Her2++++, I was getting the full boat of chemo/Herceptin no matter what.  

    I had most unpleasant surprise side effects this round that I wasn't prepared for-- but don't worry, most of you wouldn't get this. I'm taking part in the BETH trial and getting Avastin, a monoclonal antibody (like Herceptin, which I also get) that has proven to reduce the blood supply to tumors so they don't grow in some advanced cancers. This study is seeing if it impacts recurrence rate in early cancers. SE are supposed to be minimal, mostly fairly minor nosebleeds (which I've had).

    Anyway (warning: gross alert), a few days after my last tx I developed hemorroids-- bad ones, for no reason (I had them twice before in my life, 17 and 20 years ago, after c-sections for my two big babies). It was miserable. Bleeding ensued. I treated with Prep H and Tucks and they got better but the bleeding and internal itching got worse. Yesterday morning I got kind of scared, and it finally occurred to me that it must be the Avastin, so I called my nurse practitioner. I'm leaving today on a 10-day east coast college-hunting trip/vacation with my daughter and mom, and had just turned the corner from the "normal" SE from this round and was rarin' to go, with the full blessing of my team, but they were alarmed at the bleeding, too, and wanted me in immediately for a blood test.

    It's all fine-- my numbers were great, and I'm cleared to get on the plane, and I got a good prescription that seems to have all but stopped the INSUFFERABLE itching and misery. The bleeding has subsided, too.

    But I told them if this continues or gets worse with each round, I will not stay in the study. A week+ a month of hemorrhoids, rectal bleeding and pain/horrible itching on top of the all the "regular" chemo side effects is too much for this girl! The doc's going to tinker with the dose, so maybe next time will be better.

    So I'm off for 10 days of fun, gonna think about cancer as LITTLE as possible! Seeing 7 colleges, 2 plays in NYC, and meeting some family in DC, where we get to tour the White House (as well as American University) and hope to see Michelle Obama gardening! 

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  • retrievermom
    retrievermom Member Posts: 522
    edited April 2010

    Glad to hear you still get to make the trip.  Have a wonderful time.

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  • mofend
    mofend Member Posts: 140
    edited April 2010

    Writer - that sounds miserable!  I think hemorrhoids would definitely put me over the edge!  I hope you get some relief from that asap.  Have a great time on your trip!  If you're going to Gettysburg College, I can arrange a tour with my daughter - she's a senior there and loves it.  She also likes to show it off to anyone and everyone, so let me know.  The weather here is FABULOUS and it really makes me feel so good - walking and seeing all the new growth popping up really has a new meaning when you're going through all this stuff - it's really good to take the time and smell the roses, as they say!  I'm 7 days out from third treatment and I feel good - nothing tastes quite right, but other than that, I'm doing really well - thank goodness, because the huge art show that I organize is coming up fast and furious - I have lots of back up people just in case I'm feeling crappy, but so far it's been a great diversion from all this other stuff.  Great day to everyone!!!  Mo

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  • grdnslve
    grdnslve Member Posts: 310
    edited November 2010

    mofend

    after my first 3 week cycle ac i ended up in the hospital, neutropenic, --guess the neulasta didn't lasta very well.  so we are going to plan b.  had treatment yesterday with a dose reduction of the adria and doing neupogen shots everyday for 4 days, checking my blood count on mon to see if we need to continue.  but all in all still think this was the best decision to go for the 3 week cycle.  at least i have some good days--and can see the light at the end of the tunnel.

    sorry to hear you had some problems as well, but guess we will get through it.  we all react differently to this stuff.  best wishes for your next treatment that all goes well.

    burly--you are right about the jan group---all the chatter seems to be about te & fills,which i can't relate to yet.  did you do reconstruction?  i am waiting untill tx is over, but am wondering if i can get it done this year as it would be much cheaper ins wise...but wondering about the time frame as we are determined to get to az this winter!!!!!!!!!!!

    ___________________________________________________________________________________

    diagnosis: 11/19/2009, DCIS, 6cm+, Stage IIIa, Grade 2, 2/5 nodes, ER+/PR+, HER2-

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  • lbreedl
    lbreedl Member Posts: 59
    edited April 2010

    Writer: Proof that this is all a huge pain in the ass! My onc also said no point to do onco test, same exact stuff yours said! Her 2, grade 3, young age, blah blah blah. Thank God for herceptin! Let me know what shows you see and how you like them, I'm taking the kids to NY city this summer, after chemo before surgery. I've been several times but not recently. Have a blast!

    Momwhofan: So good to hear from you. Sorry about all your difficulties. This too shall pass!

    Escribbbe: Are you doing ok? I've been thinking about you. :)

    I just completed my 9th TH. Can y'all believe I still have my hair! It has thinned a lot and is coming out, I get a bunch when I brush it or wash it but it's liveable so far. I'm sure the FEC will get it though. I really sympathize about the eyelashes, I look like a ghost without mascara. So sorry. At least they will grow back :) I have been feeling better this week. Last week I was just worn out.  These hot flashes drain me & can't sleep well.

     Like someone earlier said, temporary, doable! Ya'll hang in there! Prayers for those of you having bad se's. It will all be worth it in the end & we know we did all we could with no regrets. That's all we can do.

    Have a Blessed Easter!

    Laura

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  • teemee
    teemee Member Posts: 122
    edited April 2010

    Riley, I'm so glad you got the Lexapro. I totally know what you mean about not knowing how bad you felt until you are out of it a bit. And what ordeals, both you and Writer (not to mention the incredibly bouncing back Mo).

    Everybody here, your strength is inspiring. Even when we don't feel strong, fighting for your life is pretty powerful stuff. Thank you for sharing your stories, it always helps me.

    It's day 8 for me after tx #1 so I went in to see how my white cells were holding up (doctor didn't give me anything after chemo, wanted to see how it went). She said the lowest they let it go is 1 -- not sure what kind of measurement that is for WBC -- but I'm at .07. Yes, I confirmed the "0"! Got a neupogen shot, go in tomorrow for another, and ordered not to go anywhere near people today. I was going to go wig shopping ;(, finally nausea has subsided and it's beautiful out. But where the heck can you go in Los Angeles where there's no people?!? Anyway, I get the feeling I'll be making the 90 minute RT every day for those shots for a while (sigh). At least next cycle they said they can give them to me to inject at home.

    But all in all, today is a much better day!

    Hugs to all,

    Toni

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  • faithfulc
    faithfulc Member Posts: 284
    edited April 2010

    Teemee, don't go anywhere (if possible).  This is NOT the time to get an infection.  I'm hoping that the shots work for you and that your WBC bounces back soon.  Hang in there!  {hugs}

    Writer, have a blast on the trip.  And heck with the trial if your body cannot tolerate it.  Do what's good for yourself first so you can be around to do more good for others.

    Hope everyone has a good Friday and good weekend.

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  • lindee629
    lindee629 Member Posts: 61
    edited April 2010

    Hi Mofend.....first time on here in a while. I checked out your website for the art show, and I think I can make one of the 2 dates you mentioned. However, maybe its chemo-brain or just my lack of computer knowledge but I don't know how to send you a private messege. But if you send one to me I think I can follow the directions after that and then reply to you.  Is that OK? 

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  • lindee629
    lindee629 Member Posts: 61
    edited April 2010

    Had my first round of Taxol 2 days ago, much better than the A/C I'm thinking. And the PICC was a blessing--got a good blood return, the site flushed, I didn't have to pose on my left side with my arm over my head, etc. Took about 5 hrs anyway, I guess they were worried about possible allergic reactions. So I got all the pre-meds like Benadryl which spaced me out, and then the steroids which wired me up, but the treatment went well, and I left feeling better than I had in a while. Even yesterday, I felt normal, like I didn't just have chemo. My tachycardia was less, the GI reflux wasn't as bad, the sun was shining.....I was kind of disappointed that I didn't feel as well today. I was able to work today--which is something I never have been able to do 2 days post A/C, but I did have some numbness and tingling of my lips, so in case it was an allergic reaction I took some Benadryl. Bad idea, I was zonked for like 6 hrs. And it was a childrens dose!  But now that I am awake again, I feel a little more post chemo than I did yesterday, the dry mouth, the funny taste in my mouth (I try gingerale, water doesnt do it for me either). Food has little or no taste, which I guess is good, maybe I wont be tempted to eat too much while on the steroids. Other than the GI stuff, not too bad, no nausea or vomiting. Hoping I feel OK tomorrow--its gonna be like 80 degrees here woo hoo! 

     So I am now down to my last 3 rounds, cant wait. Although reading everyone's posts on the  oncotype stuff--my doc never said a word to me about it, so I dont know if I need to ask, and should I get more chemo. UGH. Dont even want to think of that.....I've been lucky with my blood work too, the Neulasta must work well for me--my last WBC count was 14.1. It's my hemoglobin that is dropping, down to 10.1   Probably not helping my tachycardia.

    Burley--so sorry about your lashes!!!  I still have most of mine, the top ones anyway. I could take losing my hair more than losing my lashes. Hang in there!  They do grow back (I had to have mine trimmed away years ago for eye surgery) and in the meantime, wear tons of eyeliner.

    Writer--on top (or bottom) of everything else, thats awful. wow, its like there is no end to all these crazy SE's. Try to enjoy your trip anyway, and good luck with college hunting. Just got over that with my oldest son who luckily plans on staying local and go to a PA state school yippee.

    Everybody--Have a wonderful holiday weekend, and remember that every day we are closer to being finished with all this crap. Take care girls.....sorry for the typos....no more Benadryl for me.   

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