August 2011 chemo, anyone w/ me?!

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Also....the whole white blood cell count thing scares the crap out of me.... Anyone else have that drilled in your head over and over about fever over 101 requires visit to doctor or ER (if nights/weekend).... And that 1,000 is the magic # and it drops below AND a fever that it could be life threatening.... Oh my gosh, I'm putting myself is a damn bubble tomorrow!!!! They really scared me about the white blood cell count!



    Good luck to the august 11th ladies.... May your treatments bring you boredom and leave you feeling just fine!!!! Thinking of you tomorrow.....



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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011

    Hi Madismommy -- trying NOT to think about the whole WBC/fever thingy. Man -- I hope that doesn't happen to any of us. That's been drilled in my head too. My chemo nurse said today that days 6 through 9 is really when people's levels start to drop off.. Yikes...

    I've been resting/sleeping on and off since 9pm and it's now 12:30am and I'm awake and a little nauseous. I had soup during the transfusion at lunch, then a small chicken wing and biscuit at Popeye's chicken (why did I do that??!) on the way home with my sister. Came home and made an all natual pot pie from a natural farm  (only had a few bites), then 2 brownies and 2-3 Doritos and loads of water with lemon.

    What was I thinking?! No wonder I'm a little queasy. I'm going to take some Ativan/Lorazepam and see if that helps. Plus, my head feels a little wonky. Nothing major though.

    I brushed my teeth earlier with Sensodyne toothpaste and mouthwash -- not too bad. 

    Nighty-nite until 2moro...

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  • Ybrooker1
    Ybrooker1 Member Posts: 41
    edited August 2011

    Hey Chrys, it's my 2nd tx. And honestly, my SEs from the 1st were minimal compared to most. Just fatigue days 2-4 & a little constipation. Call or text me when you get there to see if I'm still there. 215-224-0824.... I would love to meet you!

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  • Chava
    Chava Member Posts: 50
    edited August 2011

    I start my a/c tomorrow and amazaing I feel only a little nervous. I am actually fasting yesterday and today...read about it on a different board on BC.org and decided after doing some research to give it try--amazingly I feel good after 52 hours of fasting. I will let you know how it goes. I am hoping that my se's are minimal. It is encouraging to read that some of you have sailed through. I guess I will find out soon if I get to join that club.

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  • LindaF
    LindaF Member Posts: 29
    edited August 2011

    Kasi,

    I seem to be sharing your same regime exactly.   I started the DD AC on 5 July, but then had a PE on day 4 post chemo (now giving myself daily injections of Fragmen blood thinner), went neutropenic (now give myself daily x5 days neupogen after each chemo session), had my liver flare, so missed the second round of AC until Aug 2.  I am now on day 10 post my second chemo round, and just starting to feel better, but my intestinal track has quit on me, so I am still only tolerating clear liquids this time around...bummer, I am so hungry but the bloating and the URQ pain makes eating not worth it.    Maybe today will be better!!  i have got to stop asking myself what else can go wrong!!!

    How are you doing with your treatments so far, mine have not been much fun.   Hard to look forward to the 16th.

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  • LindaF
    LindaF Member Posts: 29
    edited August 2011

    Sandy

    My advice, for what it is worth, ....don't shave your hair, I did that about 15 days after my first chemo round with AC since it was just coming out in huge handfuls and I am suffering.   Cut it really short, like a pixie cut, but DO NOT shave it.   Now I have this tiny stubble and it catches on everything I wear, my scalp is so itchy, and the tiny hairs, of course continue to fall out and  drop into my collar, and itch my neck. I am actually thinkiing of trying Nair, so get the prickliness to stop.  I have a couple of cute wigs, but they itch too, and that is how it is going to be, but I am thinking that the buzz cut was the wrong move...

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  • LindaF
    LindaF Member Posts: 29
    edited August 2011

    eodyne

    My experience with extreme neutropenia was that I suddenly ran out of gas, it was day 8 post AC, and altho I wasn't feeling too bad stomach-wise, I suddenly actually had to work to take breaths, and could barely lift myself out of bed when I awoke.   To be fair, I don't know If I would have recognized the signs otherwise, but I was in hospital with my pulmonary embolus and they were doing daily blood draws from me (maybe they were taking so much blood that I ran out???  Just kidding) and I awoke and was so energy-less that I could hardly sit up.  (It was a huge change from Linda, the pacing Energy bunny with chest pain the previous day)  But, after this second round, I was self-injecting the neupogen for 5 days, and then I had my blood drawn on day 7 and my white count was fine, still, I was pretty energy-less from day 4 to day 9, but maybe not as bad. 

     I also try to fluid load with a gallon of water the day before,the day of and the day after chemo, don't know if it helps, but I read it somewhere..I am trying to protect the kidneys???  I know I certainly pee out the red Adriamycin quickly, and that is supposed to be good.

    Hope this helps!!

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    LindaF - I'm so sorry to hear about everything you've been going through :-( I am sending healing energy and thoughts your way!! My blood count check is today, I'm interested to see what comes up. But I can tell you that I am definitely NOT looking forward to my next AC on the 18th. The idea of most foods to me is still yucky and I'm forcing myself to drink raw vegan protein shakes just for sustenance. I've never felt this way about food for such an extended period of time.

    Madismommy - I am just trying not to think about the WBC and fever thing and hope for the best. As hard as it is. I'm not going to lie, though, I take my temp almost every day just to make sure I don't have a fever!

    Chava - Good luck tomorrow!!

    Aimska - Good luck today!!! Thinking of you!

    Robyn - Sorry you are here but glad you are (does that even make sense?) :-) Is your first treatment tomorrow?

    Michelle - Thanks for the well wishes!

    HUGS TO ALL OF YOU!! I hope everyone is well and you are all on my mind. I would write more but I am running late for work!! :-) I think a couple people asked if others are working during chemo. I definitely am but my work is cool and they let me work from home when I need to. I worked from home the Friday and Monday after my infusion and went back into the office this past Tuesday. That will probably be my game plan throughout, fingers crossed that I don't get too sick! Have a great day everyone! 

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  • Robyn6463
    Robyn6463 Member Posts: 167
    edited August 2011

    I start tomorrow, but I've not had any education or counseling or anything yet, except for what I'm reading here! Thank you so much for sharing ladies! Not sure I could self-administer a shot. Lots to get done today, haircut, work, some shopping. I'll need to pick up Tylenol, some crackers...anything else? And I'm going to drink lots and lots of water! I'm already pretty well stocked up on ginger ale, gatorade, cranberry juice, lemonade and selzer. I'm pretty nervous! Can I take my Alprazolam before I go tomorrow? I think I need to call the Cancer center as soon as they open today!

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  • roxessence
    roxessence Member Posts: 12
    edited August 2011

    Tminus 5 hours & i'm turning this whole DREAD thinking around Now!  i'm about to kick A$$ & take names w/the help of science!!  can't get here soon enough, i say!!

    gonna be late for work - yes, i Intend to work straight thru - operative word is INTEND!  they've been awesome & understanding so it's a flexible thing.

     stay well & positive, everyone.

    roxx- Out.

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  • dianamaps
    dianamaps Member Posts: 50
    edited August 2011

    I start round 1 of AC today in a few hours, then 3 more rounds, every other week.  I just had the port put in on Tuesday afternoon and it's still quite sore, but...   Maybe it won't be as bad as using an IV, which I can't stand and which I always have problems with.  I'm definitely anxious about this whole experience, wish I could curl up in a ball somewhere and have it all go away.  I'm feeling more defeated than warrior this morning.

     Diana 

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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011

    Good Luck Roxx and Dianamaps -- I wish you the best today! (and anyone else who is starting)

    I slept pretty good (except for waking at midnite -- cause I had slept a few hours before that). I did feel a little quesy then and a teenie, teenie bit this morning. I'm just sipping lemon water and may have some yogurt to take my sterioids with.  I have to travel in to Philly at 1pm today to get the Neulasta shot, which I am dreading. Took some Claritan yesterday at 3pm and will take another round at 2pm before the shot. (maybe will pop a tylenol as well).  I hope I don't experience any severe bone pain.  I will be self-administering the shot myself after my 2nd transfusion on September 1st. It doesn't make sense for me to keep traveling back to Philadelphia for a 5second shot. I hope I can do it. Surprised

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  • michelleo13
    michelleo13 Member Posts: 342
    edited August 2011

    Morning all - Had a better sleep last night but was still up at 6 a.m.

    I've put together a master list of everyone who has posted on this thread, with information about their dates, regimen and schedule. If you're interested, PM me your email address and I'll send it along.

    We have a lot starting today.  Good luck 46MD, capinva, chava, cupcakies, Justina, Kim, Roxessence, Tsb1!!

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Michelle, I'll PM you....I need a master list for sure..... :)



    Good luck today ladies!!!! You can all get through this....one foot in front of the other!!!



    Cancer doesn't stand a chance with this group!!!! {{{{hugs}}}} to all of you!!!

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    I can't remember who said that 1000 was the danger mark for white blood cells? I am 1/2 that, I guess. My Gr read .5 on my blood work. I am house bound. Have to take my temp. 2x a day. Get to the hospital if it reaches 101. Need IV antibiotics w/in 2 hrs.  Yes, I am scared. Other than that, I don't feel any worse. I went for my daily walk yesterday. I plan to amuse myself today by running around the house w/ chlorox wipes.

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    Madismommy, I had no idea that ativan was something to fear. That is part on my anti nausea regime? It works sooo well.

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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011

    Ativan is techically Lorazepam -- same drug for anxeity. I was prescribed Lorazepam at the beginning of my diagnosis from my GP because I couldn't sleep and was just in a horrid state waiting for over 2weeks to get my first consult for BC. It supposedly is also a good nausea-aid for those on Chemo, so I was prescribed more from my Onc.  I also have Zofran, which is a wonder for nausea.

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    VtEllen... Dang auto correct....it's NOT Ativan....it's Avastin..... Which is the drug the FDA won't approve for BC treatment..... I didn't catch my i pad changing the name.....



    I was just coming on here about my having to choose this or not....i couldnt sleep last night and have been researching and researching......UGH..... I want to advance BC research BUT the s/e's seem so scary if they occur.... And it's an extra 9 months of treatment.....and 10 year of study and followup.....

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Oh, and regarding WBC count, I was told 1000 is the target number to stay above.... But if you go below it's ok as long as you don't develop a fever of 101 or more.... So, you are house bound??? For how long????



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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    Good luck today Roxx, Dianamaps, 46MD, capinva, chava, cupcakies, Justina, Kim, Roxessence, Tsb1 & Aimska!! Michelle, you are wonderful for putting together a master list. I will definitely PM you for it. :-) Glad you had a better sleep!

    Robyn - Sounds like you are plenty stocked up! I was eating dry toast with a little bit of natural PB, that was the only thing I could stomach. It's also good that you have a variety of drinks - water wasn't cutting it for me afterward. They gave me Ativan in my IV and as a take home med and I heard a chemo nurse say that she knew someone who couldn't even come into see her until he had popped an Ativan beforehand, so you are prob ok to take something like that before. 

    Chrys23 - I take Claritin  every day for my allergies and I didn't have any side effects from the shot. I also cannot give shots to myself but when the nurse gave it to me last week, it looked really easy. A quick pinch in the upper arm and it was over.

    vtEllen - I'm so sorry that you are homebound but I got a laugh out of you going around with your Clorox wipes. I'm anxious to see what my counts are today. :-( I hope that yours rebound quickly.

    Guys, I am so dreading losing my hair. I keep playing with it in the mirror and savoring my last days with it, I love it so much. It's going to take years for it to get back to the length it is right now. Sometimes I second guess my decision to not try the Penguin Cold Caps. I better get EVEN BETTER HAIR growing back after this! 

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011
    Madismommy - I'm so sorry that you have to stress out in making a decision over this; I don't think it's one I would want to make. I didn't know anything about Avastin so I Googled it and read the Wikipedia entry. I don't know if I would do the trial or not. I wish I could help you get to an answer. Frown
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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Kasi....I do the same thing with my hair.... I wish I had a dollar for every time I've tried to convince myself "it's only hair Jenn, let it go, it's no big deal, it'll grow back, it's just your hair" :(



    I wish none of us had to lose our hair! We've all given up so much already.... And yet, all I've been through so far I know my hair falling out is going to be the worst part. I even cut 6 inches off 2 weeks ago....and it's not helping me emotionally.



    {{{{hugs}}}} to you Kasi!!!

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    Thank you, Jenn!!! HUGS right back at ya!!! I know it's only hair but...IT'S OUR HAIR! At the risk of sounding super vain, I really do love mine, I loved it even before this whole ordeal. It does what I want it to. It's long. It's got a bit of wave to it and it holds curl really well!

    *sigh* 

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    I love mine too.... It's always been great. And thick but manageable....and easy to style or just wash and go if I choose..... It's a part of me, a big part of me. We can cry together because I'm right there with the emotions!!! Infact, I could cry right now knowing you're getting close to losing yours. I'm sorry!!! :(

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    I'm soo sorry for you guys. You've made me tear up. And you both have beautiful hair, the hair I've always envied!

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Ladies already a dose (or more) in.... I want to know how you truly feel having experienced Adriamycin already.....s/e's, the actual infusion, etc..... I have one day to make my decision on the B46 clinical trial and this might help me. If I don't do the trial, I will be on TAC for sure....



    Or do I flip a coin?? I really don't know if I can make this decision.... I wish I wasn't a candidate and was just told what I'd be getting???

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  • edoyrest
    edoyrest Member Posts: 55
    edited August 2011

    Madismommy,

    Ativan is used for anxiety, its been around a long time, short acting and really works well to calm nerves.  My internist prescribed it for me when I was having panic attacks after my mother died, its also helpful now when I get so worked up about all I'm going through.  It allows me to get a goods night rest which is sooo important.  Are you sure he said ATIVAN?

    Eileen

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    So, Madismommy, are you saying that you are in a breast cancer drug study? Can you give details of this? I'm goggling avastin....

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    The wikipedia descriptions of the trials don't make avastin sound particularly compelling?

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Eileen, see my post above.... It's Avastin.... My auto correct changed it on me.

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