August 2011 chemo, anyone w/ me?!

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  • Grimbol
    Grimbol Member Posts: 326
    edited September 2011

    Welcome DebinUtah, for the rash - do NOT use hydrocortisone cream on it, it can make it worse, unless of course your onc recommends it.  Mine said not to.   Try an unscented lotion, I am using Cetaphil, which is soothing it some too.

    I had trouble with what people didn't say, in the end I sent out an email to close friends and church people explaining what was going on and what I would and would not appreciate (mostly their 'stories' of people they've known). I know this apporach can't be made all the time, it only works in some situations, but some (not all) people semed genuinely grateful to me.  I felt bad as I know I have been guilty in the past for the very same things, ignoring people because I didn't know what to say.

    That's why this place is sooo nice as we do understand and can talk to each other and get encouragement without the wierd looks etc.

    Day 6 from 2nd tx and finally beginning to crawl back over the edge again. Wow, I don't like the idea of the cummulative effect. 

    Those in tx tomorrow hope it all goes well and no reactions, and minimal SEs.

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited September 2011

    Hi everyone.... Hugs to all!!! Welcome to debinutah and any other new girls I may have missed in the last couple days, I need to go back and read and catch up. I've been basically here, waiting for the bottom to drop out fro under me..... I'm a week tomorrow since tx # 1 and the only annoying s/e has been a headache everyday off and on. I've felt nauseous a few times, mostly at night and take an Ativan and feel fine?? I went to the zoo yesterday and walked around with family yesterday, I ran my usual errands today and baked banana bread and made dinner, I cleaned the house on friday.... I guess I'm just confused and sitting here waiting and wondering..... Is it safe at day 7 to say I've dodged the s/e bullet???



    All you ladies that have shaved your heads, I am SO proud of all of you.... I hope I have half your courage about a week from now. I know that's probably when my bottom will drop out?!?



    I'm sorry some of you are having some pretty crappy days lately.... I wish I could take it all away from all of us!!!! Better days are ahead, I just know it!!!!



    K....I'm off to catch up on everyone's weekends..... HUGS to all my August sisters!!!!



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  • sandy115
    sandy115 Member Posts: 172
    edited September 2011

    dianamaps sorry you are having a shortage we had a news articale a few months back here in Ontario but I hav'nt heard anymore about it.I see you are from Ithaca we are travelling there this weekend my 16 year old son is singing @ the Newfield fair we have friends in ithaca have been there before very nice city.Having chemo # 3 in the morning so hope im okay to travel with my son he actually just got back from Ithaca 2 weeks ago he was singing all over.Hope everyone is having a S/E free evening.

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  • vtellen
    vtellen Member Posts: 345
    edited September 2011

    Carol- first let me say, congrats on feeling so well! I would no sooner feel like going to a pub and socializing than going skydiving. People are treating you w/ caution and maybe a little reverence. They are going about their normal lives, while you are looking into the jaws of the tiger. So, it is awkward because you are on different planes, is all. I don't think the wig was the problem, it is just everyone is thinking, " Is Carol going to be OK?" " Poor Carol" That would be my take on it anyway. Everyone is quiet w/ me, now. People that used to joke around are serious and concerned looking. It will pass.

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  • summergirl1
    summergirl1 Member Posts: 182
    edited September 2011

    Thanks for all your kind responses, trying hard to get my confidence back today.

     VTEllen: I think you are very very right in what you say , I really felt like my bubble was burst and was very angry last night because these are the very same people who advised me (do not change Carol you will still be Carol hair or no hair) so then why avoid me just cause I look a little different? I felt like shouting I have Cancer not the Plauge and its not contageous, I know people are scared but I am not acting sick so why cant they just treat me the same . so I guess being positive is not all we have to do to get through this ,OK rant over LOL so I  am just going to pick myself up and move on .Hope all is well with you. 

    TX 2 on thursday and I am so looking forward to getting it over and done with with. 

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  • michelleo13
    michelleo13 Member Posts: 342
    edited September 2011

    Debinutah, welcome to our group!

    Carol, I do think people sometimes don't know what to say so they say nothing. When I wore my wig to church the first time, about half the people who know me complimented me on it and the other half didn't say anything. Maybe they just didn't want to draw attention to it.

    Madismommy, so glad to hear you're doing okay following your first tx. At day 7, I'd say you may just have dodged that s/e bullet. Long may it continue!

    Feeling good following my 3rd AC tx this morning. Going to pick up my girls at school in an hour or so. Haven't decided yet if I'll wear the scarf or the wig. The parents of my girls' friends all know what's going on with me, and I've told the Principal who has told their teachers as well. However, there will be lots of people there who don't know as I was diagnosed two days before school ended in June. I guess whatever I wear on my head I'll look different than I did in June so I should just not stress about it.

    So, this weather is crazy!  On Friday and Saturday, it was 34 degrees C (about 93 F) and yesterday it was 14 (about 60 F). That's way too much of a temperature swing in two days. Mind you, the cool temperatures last night meant I got the best night's sleep I've had in about two months so I'll take that!

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  • theatercat
    theatercat Member Posts: 58
    edited September 2011

    I also had bad headaches from aloxi, one of the pre-meds. I am getting a/c treatment also. I have a port almost  3 weeks old. Its been becoming increasingly sore. There is some swelling where its tied into the vein. I had it used for my first treatment and blood drawn last week. maybe it needs flushed.

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  • capinva
    capinva Member Posts: 138
    edited September 2011

    DebinUtah, please check with your doctor. I had an allergic reaction to the taxotere and it took 6 days to show up. The rash began on neck and scalp then moved to the hands and I started to swell. DIdn't have any trouble while the infusion was going on. The doctor put me on steroids and it was a big help, almost overnight. Of course I can never use taxotere because of the reaction. The doctor did say if I had another infusion of taxotere the reaction would be worse. So please have it checked.

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  • sara1970
    sara1970 Member Posts: 127
    edited September 2011

    FIRST, ladies I need some help, and I'm sorry if this is "TMI." But, since I've never had a UTI,  yeast infection or any women's issue, I don't know what's happening. I got my second CMF tx on Friday and for the past few days, I've had a slight but consistent 'burn' feeling in my vaginal area. I think I have read that this can happen with chemo. Can anyone tell me what it means, and what I should do?

     

    Deb and jbagley - I have gotten a crazy amount of cysstic acne in only 2 weeks. My Onc is not surprised. I have been using my Proactiv and I've seen a difference in just a few days. Not kidding.

     

    Summergirl, I feel for you... I  have had a good amount of people 'disappear' - not exactly what you spoke of in your post, but another way people can let us down. I hope tomorrow brings you the confidence you deserve

     

    Madismommy - I am so happy that you are doing so well. I know how worried you were during the onset and I just can't help but smile BIG for you right now... Go girl!

     

    MichelleLeo - You are past #3 - nice going - see the finish line? Is it pretty? : )

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  • koalakid39
    koalakid39 Member Posts: 42
    edited September 2011

    Well Ladies, I have to say, after catching up on everyones posts, it makes me feel a little better! (less alone, let's put it that way!!) Even though I don't respond to everyones posts, you are all in my heart constantly!  I have felt so crappy this time, I don't know how it can get worse.  I've had the funky weird dreams, I wake up with my legs cramping, for two days I couldn't even function except to go potty...this is Tuesday (right??) and I still feel like crap.  I tried to do some things around the house this morning and my heart started racing and I got sweaty........there I go, parking my butt on the couch again!  I usually have my full taste back by now...so I guess not until this is over! I have the second half of 2nd round on Thursday and then off next week and I hope I'm not in as bad a shape as this past weekend. At least by then it will be half over!!! YEAH!Ok, can I whine some more!!  I think I'm going to ask for some ativan on Thursday, maybe that will take away the stupid weird dreams that I wasn't having before!

    Sara....on the vaginal thing, not sure about that one sorry.  You might try using some baby wipes and see if that helps. I know when I had my "chemo education", the onc nurse told my husband to use condoms to protect himself.  I guess chemo does some really strange things to a person!

    A word on the confidence thing....I'm one of those people that don't care what other people think about me (when it comes to most things). I act like myself around people I know, I go to walmart without my prosthesis (sometimes it's just too damn hot to wear it!) If I don't want to wear a headcovering, then oh well! people can think what they want since they don't have a clue what's going on with me!!  Love yourselves, no matter how you THINK you look!  If someone wants to think I'm crazy for leaving the house with only ONE BOOB, that's their problem! They don't know what it feels like to wake up from surgery with something gone that you've had all your life, and how fake it feels to have a chunk of plastic in your bra. Don't worry about others (except family of course!) or what they think!   OK, I will get off my high horse. I do feel better anyway LOL!

    I have everyone has a great evening! lots and lots of HUGS to ALL!!!! KIM

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  • Doodlebug12
    Doodlebug12 Member Posts: 35
    edited September 2011

    Hello ladies



    I must apologise for not posting in sooo long.



    I just wanted you all to know that I am reading posts daily and keeping up to speed and I will post a proper message tomorrow or the next day if I am able. I had #3 yesterday and I am not feeling well at all.it is 5am and my heart is racing, my head is pounding and I can't sleep- onc gave me new tablets today but they have made fleck all difference. Think I'm gonna have to resign myself to being a night owl that shakes. Hope the men in White coats don't drive past my house anytime soon. I would be an ideal candidate for them to take away and put into a padded room :-)



    I luv all you girls. You are all so strong and keep my spirits up. What a lucky day when I found this forum



    Take care God bless you all and ill be back soon with my words I'd wisdom (ha)



    Michaela

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  • sandejosgirl
    sandejosgirl Member Posts: 57
    edited September 2011

    Heyyah all. I can't remeber at this point if I have posted here before. I kinda felt like I didn't belong 'cause I started Chemo in May and just had my last today.

    Wanted to post for Michaela: I did dose dense ACx4 and weekly Taxol x8.  When I was on the AC I felt AWFUL and had a really hard time sleeping. You'd think with feeling so bad that I would be able to sleep at night, but I had a hard time going to sleep and if I woke in the middle of the night, had a hard time getting back to sleep.  Just wanted to let you know that it passed about two weeks after I moved on to just Taxol.  I dont' know if it was just getting "used" to my dx or treatment or if it was not being on the AC, but I do sleep much better now. I would take Ativan and melatonin. Helped a lot.

    Peace, Stephanie

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  • mommichelle
    mommichelle Member Posts: 191
    edited September 2011

    All,

    Just dropping in from the August 2010 chemo thread.  I am sure most of you have had at least one treatment (some lucky ones probably already have the first two in).  The first is definitely the scariest...not knowing what to expect.  Losing the hair is hard, but once it is gone, you have a new sense of inner strength.  You can do this!  You will get through it and come out stronger!  Hang in there, stay hydrated, and keep your heads up (or down, in the case you just want to keep your head down and push through it).  Although it seems like time is going slow, you will look back on these days and wonder how quickly they actually passed.  Enjoy your "golden weeks" if you are lucky enough to feel fairly normal on your off weeks.  I am thinking about you all and praying for minimal side effects and maximum ass kicking!

    Hugs,

    Michelle

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  • vtellen
    vtellen Member Posts: 345
    edited September 2011
    Thanks, Michelle from Aug 10! A lot of us can definitely use some encouragement at this point. I am #2 of 4 T/C. I am over a week out and still feel pretty nasty. Have to keep picking myself up by my boot straps. Kasi's quote "when you're in Hell keep going" has bolstered me. Envisioning the Taxotere cornering and murdering the cancer cells (this can be quite graphic and violent, I've gotten into the angry part of chemo!) has helped, also. I have been feeling particularly sorry for myself this week, because I feel crappy, but also because this was the week that my fiance and I were going to quietly "tie  the knot" ( after 10 yrs) and have a nice long weekend in Maine. I'm not exactly feeling bride- like right now. Cry When life throws you a curve ball?
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  • Vivie
    Vivie Member Posts: 52
    edited September 2011

    Hello everyone...

    vtEllen , you go and tie the knot..your fiance's stuck with you in this..

     I just resurfaced from tx #2.Had an 25 hr nap ( nap? ) and still nauseous , still out of sorts , trying to hang in there..the worse thing is that *I* do this to myself , and I keep thinking..if only the damn tumor was half a centimeter smaller.If only.... If only....If only I had found it a lot earlier ..If only...Sorry to sound so negative , but things seem a little bleak for me right now..Not to mention that also my country is teetering on the brink of debt and exit of the euro...

     This is one of the days I hate myself in general..I want to feel positive...but cant..

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  • Taylor777
    Taylor777 Member Posts: 141
    edited September 2011

    Hugs to you all....We can do this were strong women!!

    I know what you mean Ellen life throwing you a curve ball..This sucks!! I was supposed to have started school yesterday..Who has time for this?! Were busy women!! But we are STRONG WOMEN and were going to beat this monster!!

    Kasi..I love that "When your in Hell keep going!!"

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  • Taylor777
    Taylor777 Member Posts: 141
    edited September 2011

    Vivie..I say that so many times if only I went earlier, if only this and that but we cant change anything and it sucks!! I'm starting to say thank god I went because there are so many women that I know that dont even go to the docter becauase there scared of what there going to find!! I know many that dont go to the dr. they would rather not know!! So we should all be thankful that we caught this and that were being treated..I've been having a hard time being positive these last couple of days and yesterday was the worst, all I did was cry!!! But today is a good day..I talked to a lady this morning who is a 9yr survivor and a 12 yr survivor of skin cancer and she is doing great!! This someday will be a memory but right now we just have to be strong and we can do this...Sending you a hug Vivie

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  • DebinUtah
    DebinUtah Member Posts: 75
    edited September 2011

    Thanks to everyone for the warm welcome and for the advice!.  The rash on my face is gradually fading.  I've been using Atopalm MLE cream--it's amazing--originally designed for post-cosmetic surgery patients.  Pure moisture and no side effects.  Vivie, I know exactly how you feel.  For the first week after TCH I just feel absolutely toxic: miserable, depressed, anxious, angry--I hate everything about myself and how this damned disease is ruining my life.  Then about day 7 or 8 I can literally feel the toxins leaving my body: I'm still tired and shaky, but mentially  I feel more like myself again.  I know I'm very lucky that most of week 2 and week 3 are pretty good for me, but I can barely stand the thought of FOUR MORE first weeks!  I know it may seem a little corny to some folks, but during those bad times, I get a lot of comfort from some CDs I bought called Relax into Healing for chemotherapy patients.  It's just guided relaxation with a focus on "welcoming" the healing effects of the chemo--very calming.  Peace and strength to everyone.

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  • Chrys23
    Chrys23 Member Posts: 291
    edited September 2011

    Morning everyone -- I think this is day #8 for me. Yesterday I woke up with really bad dizziness and nausea then it subsided. I felt achy too. This is the first "nausea" related s/e I've ever had. I have been eating like it's my job -- like A LOT and eating late too. Maybe that is the cause? However, today, I woke up, felt ok then a HUGE wave of rolling nausea hit with dizziness. Then gone. Really weird.  I went out to get a bagel and I took some Zofran, but I feel ok.  Anyone have any ideas? It's just weird to get this type of s/e this late in the week.  My legs have been on and off achy, but I've been managing because of the round-the-clock Advil since last Thursday.  During days 7 & 8 during my first treatment were my worst days when I look in my notes. I actually had horrifying flu-like symptoms.

    And to top it off...my Chihuahua Nacho bit me this morning. He was eating out of the cat bowl and I went to move it and he nipped my hand......on my lymph node side *sigh*  Undecided   I put alchohol and Neosporin on it and now he's all over me knowing he was bad. Considering this could be my low blood count days, I hope I don't have any issues.

    Ellen! I didn't know you were a bride-to-be -- that is awesome! Take that leap and relish in it, even if you are going through this.  I'm very happy for you!

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  • Vivie
    Vivie Member Posts: 52
    edited September 2011

    Ah Taylor..thank you for the encouragement..it's just a bleak day in general..Greece is on the brink of bankruptcy..strikes all over..Everyone here is really down about it not just me..then it's me and the curveballs..this year has been a rather bad year for me..

     Add in the depression that I can't hear..I'm deaf w/ a CI but I can't wear my CI bc of the scalp being really sensitive..I've had a lot of supprot from everyone , and I've made it through surgery and treatment #1 , but it's starting to really hit me..it's so hard , isn't it girls ?

     I hope tomorrow is better...

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  • Kasi
    Kasi Member Posts: 216
    edited September 2011

    Hi everyone! I just wanted to say hi and give you all hugs. I wish I had time to respond to everyone individually. I think of you all every day as we go through this journey. It just has to get better, you guys. It has to and it will! That is what I tell myself every day.


    Love to you all!! <3  

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  • theatercat
    theatercat Member Posts: 58
    edited September 2011

    Number 2 for me also next week. My first one was pure hell!!! Vomiting, dry heaves,could not move. The bad stomach cramps,could not even keep liquids down. My nausea meds are going to be changed. Hair is starting to come out today exactly 14 days later{as I pick my hair off the computer keys LOL]. Since sept 1st I have been really good except for mouth sores and a low wbc. I almost feel normal. I can deal with nausea just not the throwing up,  and chills and shaking. I hear Taxol is much better,then I hear its worse.

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  • vtellen
    vtellen Member Posts: 345
    edited September 2011

    Chrys- I am having more nausea this time as well. And eating is weird, I feel gross so I don't eat. Then when I do eat, I go over board and feel sick again. And I feel hungover pretty much every day. And this is day 9 out from chemo. I am having a lot of lip and face numbness, plus my wbc has bottomed out again, so the chemo nurse is going to recommend that they lower the taxotere dose. Which is a whole other ball game.  But, I seem to be overly sensitive to it. Oh, and I have cut and smashed up fingers on each hand ( 2 diff. spastic acts) so, I'm trying to keep them super clean as well. If Nacho's mouth is anything like my dog's....

    DebinUtah- I am ordering the cds. I think I need something like that- is it Nancy Hoon(?) ?

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  • vtellen
    vtellen Member Posts: 345
    edited September 2011

    oh and geez, Theater Cat! What were your bad nausea meds? Zofran seems to work ( but now I'm hearing that it may be part of the headache issue) I also have had good results from ativan, which I melt under my tongue. You should not have to deal w/ vomiting! I hope that you don't go through that, again!

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  • Chrys23
    Chrys23 Member Posts: 291
    edited September 2011
    Ellen -- What's weird is that I've NEVER had nausea at all. I can still eat full meals, still have an appetite and have never been nauseated. It's just strange that I would have it two day in a row via a sudden onset and then it disappears. I really have been eating way too much and late as well.
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  • jbagley
    jbagley Member Posts: 102
    edited September 2011

    I am on day 2 of #4 A/C. only nausea so far but awaiting the fatigue. Tomorrow will prob be a bad day, Resting and waiting, then it will get better.

     I want to thank all of you. You are all an inspiration to me and it is great that we can talk frankly. About anything!!!!!! That's really what we are here for, companionship and compassion through a really tough ordeal. We need this.

    My onc doc stated that there is def a shortage of Taxol. But the center that I go to has some in stock. I might get some of it. If not Dosi-Taxol is a sister drug which is prob what I might get at some point. my next treatment starts in 2 weeks and it will be taxol (i hope).

    DebinUtah--Some other great relaxing music is Reiki music. You can find it at Amazon or any other type bookstore. Anything for Reiki music is soothing and meditative. I listen to it every night before I go to bed. I have to agree to someone's post, that A/C causes insomnia. I sometimes don't get to sleep until 11 or 12, then wake up to go to the bathroom around 1 or 2 and find it hard to get back to sleep.

     To everyone else, hope this week is a good one.

    Thanks everyone.

    (((((HUGS))))) love to all.

    Jennifer

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  • vtellen
    vtellen Member Posts: 345
    edited September 2011

    Chrys- What are you taking to prevent C? Because, clearly it works well for you, and I want to try it next time. I was using Senekot-s, but not enough of it or something, as I really suffered this time. I mean cramp city. That was the majority of my nausea. What do you take after your treatments? I took the steroids for 2xday for 3 days + morning of the 4th day. I took 11/2 ativan at bedtime and a zofran morning and night for first 3-4 days after. And Aleve for first 5-6 days. I think that's it....There were a couple of ES Tylenols thrown in during the achy period.

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  • Chrys23
    Chrys23 Member Posts: 291
    edited September 2011

    Hey Ellen -- I use the Sennekot-S (to really have an effect, use 2tabs/2x day), but the thing that really works for me is Milk of Magnesia. You take a couple of tablespoons and it will make you go in about 2-6hrs.

    I really don't take any meds after my treatment except for the steriods. I take the steroids twice a day the day before, the morning of (then I get 20mg of steroids during chemo) and then skip the night, and then the day after I take my final two steroid dosages.  I don't take any ativan or zofran after treatment (never needed it) because I get a huge bag of it in my IV during treatment.  I actually sleep fine and I can eat fine.

    I start taking Advil and Claritan the day before my Neulasta and I've continued the Advil for the past 7 days. I haven't taken any today.  But as I type this, I feel "off" -- stomach is lurching again like I'm going to be nauseated.  I don't understand why this is happening 8 days in. I had a bagel and some popcorn and that's it today. Weird...

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  • Grimbol
    Grimbol Member Posts: 326
    edited September 2011

    Oh, Can I join the misery here??!!  I have not been able to keep ANYTHING in my stomach for over 24 hours now.  It came from nowhere, just started throwing up, so weird.  I do have a headache with it but not so severe as it can be to cause the puking.  I went in for Demerol for the headache last night, then this morning, still puking I went in and got more meds and a bag of fluid.  This is day 8!!! poop, I was supposed to be back at work today,  I have no diea how to deal with C, I'm convinced anything I do will be too much and go to D, and how can I possibly have anything need to go when I've thrown up so much??  Oh misery me!! 

    But I'll be ok!!

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  • dianamaps
    dianamaps Member Posts: 50
    edited September 2011

    Hi all.  It's chemo-eve, and I'm trying to rally that willing attitude to go to the hospital for AC round #3 tomorrow.  

    Vivie - I really like what you said, that sometimes it's hard to believe that we're actually doing this to ourselves.  That is, there are plenty of people who choose, for whatever reasons, not to do chemo.  And here we are, doing it, for lots of reasons.  Mostly we all want to live as long, and with as high a quality of life, as if we'd never found the stupid lump(s) in the first place.  But we did. And so we take the medicine that's (eventually) supposed to make us better...

    Grimbol: I'm so sorry. I hear the misery in your voice!  I really hope things will get better soon.  We *need* those good days so much to help bolster us up to go through the bad ones again!

    JBagley: love your positive thinking.  May you slide right through the worst of the s/e!  

     vtEllen: hope the nausea calms down!  My last round I had a lot less, don't know if it was the acupuncture that helped or the other new drug, the one that's a patch that you wear behind your ear, starts with an "S" but can't think of its name...   Are you getting rain over there? It's been POURING here in central New York all day. Serious flooding going on around here. Like you need more rain over there!

    Peaceful sleepy nights and calm stomachs to us all.

      

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