August 2011 chemo, anyone w/ me?!

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  • michelleo13
    michelleo13 Member Posts: 342
    edited August 2011

    Thanks for the great info on chemo, Kasi!

    Day 5 post 1st AC and the energy level has rebounded today. My only complaint today is a terrible case of indigestion/heartburn. Haven't had that since I was pregnant!

    As for 2012 plans, an overnighter somewhere easy to get to (I'm thinking NYC) followed by a cruise for those interested sounds perfect to me!

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  • YaYa5
    YaYa5 Member Posts: 667
    edited August 2011
    grimbol, my onc and his nurse say they've never heard of the claritin w/neulasta trick.  it kind of amazes me.  i took claritin the day before, the day of, and several days after the neulasta shot and i didn't have any reactions to the shot at all.  i have my next treatment a week from monday and i plan to try the claritin again.  if it works then too, i'm all in!!
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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Ellen, can you take the wig to your hair dresser to be cut and styled??? That stinks....



    Thanks for the great info Kasi!!!!

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

     Madismommy, I really think it is beyond help. And now I have had a glimpse of myself w/ short hair and it is ewwww. I am depressed for the first time about losing my curls. Who knew Headcovers had such a restrictive return policy. I didn't pay attention. BAH

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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011

    Kasi -- you rock!

    Ladies, I actually went to a nearby casino today. Even ate a burger, however -- my legs feel like 50lb weights and I'm lightly achy on and off in my shoulders.  I'm still taking the Claritan -- I think it helps. I missed my 1pm dose and I could tell the difference.

    Its weird; my legs feel like I can't move them hardly, really heavy.  I guess it's the chemo doing somethin'. (?!?) . Anyone else feel like that?  Also, I fell asleep last night at 9:30 and woke up this morning at 8. Yowsa!

    I just keep forcing myself to walk around -- even though it's tuff moving around. My body feels tired.

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  • IslandGirl50
    IslandGirl50 Member Posts: 50
    edited August 2011

    I'd like to join in with all of you! 

    I was diagnosed 6/30/11.

    Bilateral mastectomy, sentinel node biopsy and reconstruction at the time of surgery (TE) 7/25/11.  Five lymph nodes removed - biopsy results = negative.  Good margins.

    Port will be put in 8/16. Nervous about it too!

    Chemo starts on 8/22 - 4 treatments every two weeks of Cytoxan & Adriamycin THEN 4 treatments every two weeks of Taxol. THEN because I am not a 100% triple negative (5% estrogen)  All my Drs consider me Triple Negative even though I have a weak 5%.

    I am just starting this Chemo journey and dreading it.  You guys are an inspiration to me!

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Uh oh, really??? I was going to place an order with them for scarves. I just ordered a wig from wigs.com this morning that I HOPE I'll like.... More of a fun, extra wig that looks nothing like my hair or color..... But I'm gonna be pissed if I don't like it and can't send it back. BOO.... :(

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Hi Jo Ann.... Welcome to our family. That's great that your nodes and margins were all clear!!!! How you feeling with the bilateral and TE's? I had mine 6/14 and STILL uncomfortable.... :(



    I start my chemo right after you, 8/23.....

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  • Robyn6463
    Robyn6463 Member Posts: 167
    edited August 2011

    Thanks vtEllen, I've been concerned about an allergic reaction myself. Took some benadryl, just in case...My GP changed my Blood Pressure medicine early this week, because he was afraid the hydrocholorthiazide that I took would cause me to dehydrate on the chemo, so I'm wondering if I'm flushed because my blood pressure has skyrocketed as a result of the med change. I really feel pretty good overall. Took a nap this afternoon, and I've had a little bit of diarrhea, but my apetite is still the same! I'm still pretty red, but don't feel to bad, so it's off to curl up with a good book now!

    I'll go along with whatever plans for the group hug/cruise...what have you as long as I can fit it in my budget! And I'll really try!

    Great research Kasi! 

      Hope everyone is feeling well and enjoys the rest of the weekend!

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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011

    Well - I'm in a lot of leg pain tonite....strong achiness :(

    Have a good nite everyone; I hope I'm better in the morning.

    Hopefully extra-strength Tylenol will help.

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  • Grimbol
    Grimbol Member Posts: 326
    edited August 2011

    I got some Claritin and am trying that, but I should probably have started it before the shot.  i am very achy tonight, only 2 hours into the Claritin.

    I may change my mind but I think I'm not going to buy a wig, I think hats will do it for me, but we'll see.

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  • jbagley
    jbagley Member Posts: 102
    edited August 2011

    Hi everyone, been away for a bit. I had my second A/C tx monday, today is day 6. This one was a bit worse than the first. The fatigue hit me aboujt 12 hrs later than the first tx did. The worst parrt is the taste buds, nothing tastes right for a few days....ugh. my daughter who is 9 made me a nice smoothie. The only problem with it was, she used mandarin oranges. It hurt my mouth, but I drank some of it. She is trying so hard and doing a good job. She is my little nurse (I m a nurse as well).



    My hair has finally decided to leave me. It started really coming out the day after my second tx. Little sprills on top, that wont come out even when I pull on the,. Might have to get the razor out! I will be doind tx on mon, labor day--tues.)



    I want to thank everyone on here for all the support and answers.

    Jennifer (38 yrs old)

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  • jbagley
    jbagley Member Posts: 102
    edited August 2011

    Hi everyone, been away for a bit. I had my second A/C tx monday, today is day 6. This one was a bit worse than the first. The fatigue hit me aboujt 12 hrs later than the first tx did. The worst parrt is the taste buds, nothing tastes right for a few days....ugh. my daughter who is 9 made me a nice smoothie. The only problem with it was, she used mandarin oranges. It hurt my mouth, but I drank some of it. She is trying so hard and doing a good job. She is my little nurse (I m a nurse as well).



    My hair has finally decided to leave me. It started really coming out the day after my second tx. Little sprills on top, that wont come out even when I pull on the,. Might have to get the razor out! I will be doind tx on mon, labor day--tues.)



    I want to thank everyone on here for all the support and answers.

    Jennifer (38 yrs old)

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  • jbagley
    jbagley Member Posts: 102
    edited August 2011

    Once I get the whole list of archangels and signs, I will post for everyone.



    Amethyst and rose quartz are good healing stones. I wear both when I get my chemo. I have a large rose quartz pendent that I got from Hong Kong from Ebay. It lies right over my heart. My amethyst is a bit higher. Moonstone is another healing stone as well. I wear it as a bracelet.



    This is my ritual when I go for chemo. The stones help fight and heal.

    jennifer

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Jennifer, my grandma gave me a really nice bracelet to wear to chemo.... And I know she told me one was a moonstone in it....I'll have to find out the others. I'm going to buy the chemo bracelets that you countdown with them.... I was going to get that for my daughter.

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  • Jillejo
    Jillejo Member Posts: 32
    edited August 2011

    First, thanks for the warm welcome to the board. Had my first ac treatment Friday, and it wasn't bad at all. the worst part was that I started crying as soon as my big toe entered the room. Ugh! Wiped the tears away, got my big girl panties on, and did the deed. Quick, easy, and painless. Then lunch at cheddars and home. Felt fine Fri and really fine yesterday, according to my family, since I was a one woman comedy troupe. fortunately, I remember very few of my antics. Scott had to het his sister to come babysit me while he ran errands bc I was so goofy. The good news is no nausea, and I can lay down whenever I feel like it for now, until school starts Tuesday. Hope everyone has a great Sunday!

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  • mrfiedler
    mrfiedler Member Posts: 14
    edited August 2011

    Hi ladies, 

    I started TC x4 on August 2; next treatment is on the 23rd. So far the SEs haven't been too terrible. No nausea or fatigue to speak of, however, every day seems to bring about something new. I'm mostly dealing with skin rashes on legs, backs of my hands and fingers, arms, shoulders and I had terrible throat and mouth issues. Mouth sores and raw throat were painful - thankfully a call to my MO resulted in a prescription for "Magic Mouthwash." It's terrible going down, but provided overnight relief!

    Yesterday (Day 12), my hair officially started falling out. I have 2 wigs ready and an appointment on Wednesday this week to have it all shaved off. I'm hoping I can hold on to most of it enough to make it through the next 4 days. Terrified of this part, of course.  

    My golden retriever provided some comic relief the other day though.  She saw the wigs on their stands on the dresser and immediately went in to guard dog mode with growling and barking. Poor thing probably thought there were 2 strangers in the room! Thankfully a supervised sniff of both wigs settled her down.

    I don't have any children and can only imagine how difficult it is to take your children on this journey with you and want to keep them safe and protected. I am an ony child - telling my mother was the hardest part for me and I struggled over it for days before finally talking to her. While I understand that it is different with kids based on their ages, sometimes we take for granted how strong those who love us really are. 

    I have read posts here from so many brave women and find so much of what is shared to be encouraging. Thanks to all. 

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Welcome mrfiedler.... You and I will be sitting in the chair together on the 23rd, mine will be #1 of TAC....glad to hear your side effects are minimal....the mouth and throat don't sound very nice but hopefully the "magic mouthwash" will clear it up.



    I think it's hard telling any loved ones about this.... actually my mom took it the worst out of anyone. I would call my dad at the beginning of all this to make sure my mom was ok. Irony.... She was a mess though!!!



    I hope your hair holds out til Wednesday!!!! I'm going to try to do the same thing with my wig place... I have an appointment for day 14, I hope I get there..... Good luck! :)



    Jillejo.... What happy drugs did they give you and where can I get some??? LOL. :). Glad everything went smoothly!!! One down, YAY!!!

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  • oaktownmom
    oaktownmom Member Posts: 114
    edited August 2011

    First chemo (AC) on Tuesday - what should I eat?! My day starts with port placement at 10 am, so I won't be able to eat anything to 6 hours before (so, effectively the night before). My infusion starts at 1, so I'll have a short window to get something to eat. Any suggestions about what I should eat? I've heard some people fast, but any kind of meds on an empty stomach always makes me nauseous. Should I just eat a regular lunch, whatever I feel like? Or do something very mild like a smoothie or clear soup?

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    I was told to eat "whatever I feel like eating" at that moment.... But I'm going to try for smaller little snack sized meals....I get an upset stomach with meds too....so I'm thinking a regular sized meal could be dangerous for me?

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  • edoyrest
    edoyrest Member Posts: 55
    edited August 2011

    mrfiedler,

    I have almost the same dignosis as you, but bilaterally and grade 1.  I started TCX4 on Aug 3.  I've had weird different SEs almost every day since.  I'm day 12 from 1st chemo now and am getting anxious about the hair loss.  I have a plan for a wig but really am praying I won't need it.  I'm not shaving my head pre-emptively, just going to let it fall until I panick and then go ASAP to the wigmaster to let him work his magic.  I hear if you shave it and it all doesn't fall out right away, its prickly and hurts your scalp.  So I'm just going to wait and see.  My next tx is Aug 24.  Don't want to repeat the past 12 days 3 more times though, the thought is overwhelming!

    Eileen

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  • mrfiedler
    mrfiedler Member Posts: 14
    edited August 2011

    Hi Eileen - it really is something new every day, isn't it? A girlfriend of mine who has been through this (unfortunately) suggested that I sleep in a hairnet to minimize hair loss overnight, use a wide-toothed comb and skip my daily washings. Whether or not it helps me hold on until Wednesday remains to be seen, but I'll try anything! I thought hard about just letting it fall out on it's own versus the pre-emptive head shave - I decided that I'm probably not strong enough to see it fall out. Either way it's not easy! I think tomorrow I'm wearing a baseball cap to work - OY!

    Madismommy79 - me, too! And I hope you get there as well.  Thanks.

    lstreett - Be sure to have something to eat before your treatment. You'll want to keep your blood sugar normal.  I had breakfast before heading to the hospital for my 1st treatment. In spite of that, my CBC showed low blood sugar and my MO sent me to the hospital snack bar for orange juice and a snack before my infusion.

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  • summergirl1
    summergirl1 Member Posts: 182
    edited August 2011

    Well after a total meltdown from anxiety yesterday and incredible nerve pain from mx . Im glad to say I had a lovely day today, sat on the beach for a while then had fun with my sons girlfriends  they wanted to try my wig on, they love it so much they want it when Im done with it, LOL it made me feel good though as they told me they thought it looked so much like my own , all I want is enough confidence to go outside and hold my head up high.then i will be fine.

    Hope everyone is doing well and havent got too much trouble with SE's and GOOD LUCK to anyone having TX in the next few days ,  

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  • michelleo13
    michelleo13 Member Posts: 342
    edited August 2011

    Welcome Mrfiedler and IslandGirl5. Sorry you have to join our club but I'm sure you'll find the support and conversation here is amazing.

    IslandGirl, our hormone receptor stats are very similar. I had a very low estrogen % too but they're considering me triple negative. I need to talk to the ONC about that again when I see her on Friday as I've been hearing that lots of women with low estrogen receptor % are still being treated with Tamoxifen. It's all very confusing!

    Day 7 post 1st A/C and I've actually felt almost normal all weekend. The terrible tiredness from Thursday and Friday has gone away.

    For any of the newbies, I've made a master list of everyone who has been posting on this thread so we can keep track of who's getting what tx, when, etc. If you'd like a copy, PM me your email address and I'll send it along.

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    I have been having a revolving door of symptoms as well. And yesterday I threatened to quit doing chemo all together! But, for the most part, for the last few days, I feel like myregular self - most of the time.

    So, I was wondering if we could do some posts of what we consider our successes in this crazy chemo trip. Like for instance, when my mouthwas at its worst - numb lips, metallic taste, rough feeling all over inside - I found that LOTS of ice helped me to keep drinking. I would fill a glass w/ ice, pour in some grape juice, squit some lemon on it, and fill it up the rest of the way w/ water. This saved me. Seems like a little thing, now that I think of it, but I have very fond feelings towards ice now!

    I would also say that for me getting out and walking is key. Every day.

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  • Kasi
    Kasi Member Posts: 216
    edited August 2011

    Welcome to the group Mrfielder & IslandGirl5!

    Summergirl - I'm glad you're feeling better and had a great day today, you deserve it. Sorry about the nerve pain :-( 

    Man, I feel so good this weekend - other than a little bit of fatigue, I feel like my pre chemo self. I think the neulasta kicked in yesterday, my knees and back were a little achy but no big deal. Ugh, it sucks to feel so good and know that my next treatment is on Thurs.

    Day 10 from first treatment and my hair is still intact. My appt at the wig place is on Friday. By then it should be coming out at a good clip :-(

    You're welcome from the info! Got it from chemocare.com and livestrong. :-)

    Yes! An overnighter and a cruise please! Need some fun things to look forward to.

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  • summergirl1
    summergirl1 Member Posts: 182
    edited August 2011

    Kasi. Wow thats great that u feel so good its so encouraging for those of us who havent started yet , I have to say although my tx is a little different TC x 6 every 3 weeks. it all seems doable from reading everyones SE's and wont it be fantastic when we are all commenting on our last txs hopefully the time will fly by and we can all have a big cyber party at the end LOL  my first tx starts thursday so we will both be having tx same day.(  best of  Luck ) 

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  • MaryjRN
    MaryjRN Member Posts: 130
    edited August 2011

    Hi ladies,

     It's been several days since I posted.  I'm getting ready for #2 tomorrow.  I've cooked up a few things that we can nibble from for the next few days.

    My dd21 cut about 4 inches from my hair yesterday.   That would put it at day 13.  My hair is curly, so it is very forgiving as far as a 'bad' haircut  I am already getting annoyed by all the hairs that are all over my clothing and everywear else.  I'll probably cut some more myself.  Not sure about the shaving part, as I have also read  about the sore scalp issues.  We'll see.

    My tip for SE?  Watermelon seemed like it was a food from the gods.  And also, smaller amounts of foods at meals, along with more meals! Laughing

    Hi to all the newcomers.  We have a great group here.

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  • Chrys23
    Chrys23 Member Posts: 291
    edited August 2011

    Evening --

    No more bone pain today! YAY! Last night was a doozie - yowsa!

    I'm feeling better, just a little 'backed up'. I purchased "Smooth Move Tea" and am popping Sennekot and drinking Milk of Magnesia. Ugh  Sorry if this is TMI everyone  Foot in mouth

    I'm eating way too heavy - had 1/2 a chicken parm sandwich and some fries, but I was craving it. Had ice cream too. No wonder I'm having potty issues. LOL

    My teeth, mouth and tongue feel "off" (no sores) and for some reason my left foot is sore under neath the heel. Weird.... Oh, I'm bloated too.....Wow, I guess I'm not doing so good! LOL

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  • sandy115
    sandy115 Member Posts: 172
    edited August 2011

     Welcome to the site Islandgirl and Mrfielder sorry you have to be here but the site will help you alot we are all in this together .I having Chemo # 2 tommrow so trying to drink lots of water today.Also if you take a stool softner a day or 2 before it helps as you getting very backed up day 2 and 3 after chemo .Eating ice chips and drinking lots of Fluid helps with the mouth sores.Got my hair cut thursday real short as it was falling out but now there is not much left and I hav'nt slept for 2 nights with the scalp pain but its way to painful to shave it.I would suggest getting it shaved when it first starts to fall out.i tried to save my hair  as long as possible but the S/E are not worth it.I hope everyone having Chemo this week have minimum S/E Goodluck.

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