Starting Chemo February 2009?

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  • apple
    apple Member Posts: 7,799
    edited February 2009

    what a mess.

    you all will be ok in a couple days. 

    (apple says encouragingly with a little smileSmile)

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  • Britt
    Britt Member Posts: 731
    edited February 2009

    Hi, Apple -

    Although I am not a Feb Fury (will be a March Chemo Warrior Princess), I very much enjoyed and appreciated your post regarding the chemo infusion "parlors."  I read it on the day I was told I am definitely going to get chemo and it gave me feelings of encouragement and, yes, peace.  So many of us going through the same regime . . . .together.  Thanks.  You have a great gift of perception . . . and also of expression.

     Maria

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  • webwriter
    webwriter Member Posts: 535
    edited February 2009

    Would you believe I was out of the house for less than two hours and had my WALLET STOLEN?

    Is there no end to this stupid nightmare?

    Webbie's havin' a downer day for sure. Gotta get back on the phone and check on my kid. 

    Hang in there ya'll. It's GOT to get better than this!

    Love,

    Web

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  • Carol0371
    Carol0371 Member Posts: 23
    edited February 2009

    Web-so sorry you're having such a rotten day.Having your wallet stolen-you sure don't need that on top of everything else.Sometimes I don't know why the powers that be can't move on to somebody else.Hope tomorrow is better for you.

    I finally slept Wed nite for 12 hrs.We went out yesterday & did some non-medical things for a change.Sometimes betewwn the 2 of us it seems like all we do is go to Drs. & hospitals{Husband is on perm disability-so not very healthy]Enjoyed being out but today I'm wiped out.The yuck taste has arrived in my mouth,I knew it was coming ,just didn"t know when.Grapes taste salty,Mandarin oranges taste sour,water tastes off.I bought some peppermint tea to try, sounds good right about now.

    Hope everybody can enjoy there weekend at least a little.It's supposed to get to 50 degrees here tomorrow.Maybe we can take a short walk outside.

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  • csbsk123
    csbsk123 Member Posts: 16
    edited February 2009

    Hi everyone.  I hope tomorrow is better for some of you.  I feel fortunate that the SE's are mild.  It was 27 here in NY and felt like a heat wave so I took a walk with a friend.  The fresh air felt good, but after picking my daughter up from school it was nap time.  I can feel some ache bones especially in my shoulders, I'm guessing Neulesta is working.  The nurse called to check up on me today.  It is like a big family and the support is great.  Have a great weekend and remember there is sunlight at the end of the tunnel.

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  • susan13
    susan13 Member Posts: 732
    edited February 2009

    Oh gosh... So many of you don't sound too good. I'm so sorry!  Please please call your onc's.!   I hope all is better soon ladies!  Hugs to you all, and a good nights sleep!  Webwriter-so sorry about the good-for-nothing thief who invaded your privacy!  arg.. that is just so wrong!

    Sue

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  • suzmarks
    suzmarks Member Posts: 83
    edited February 2009

    Hi all, haven't written in awhile. Things have been happening at such a fast pace for me. I had my port put in on Tues. and today started my first chemo treatment. I have to say it was a pleasure to have the port to use, so much less fuss. I got really good news as well. I'm participating in a clinical trial here in Albany, NY so I was either going to get TAC or TC. It was the luck of the draw. And luck I had as I am only getting the TC, a much milder regime so I'm very pleased. My chemo session was quite nice. I sat in a heated recliner with a massage mode and had heated blankets placed on me. I read, listened to my ipod, knitted, chatted with my husband, and had some snacks. Sounded easier than what my work day is like. So as long as I don't get any of the nasty side effects this seems doable to me. Of course I do realize the road ahead will be more challenging but was glad the first step was good. Soon I'll check into getting a wig and see how I can redo myself with a new look. There has been so much support coming from various people in the community as well as my friends. I'm just in very positive spirits. I'll have to refer back to this I'm sure at a later date when I experience some of the more difficult parts of this. My best wishes to you all. I'm going to go and read back a couple of days now so sorry for not addressing anyone.  Suzanne

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  • suzmarks
    suzmarks Member Posts: 83
    edited February 2009

    to Bethie1-wow I can't believe they put the wrong port in, isn't it one size fits all? Which hospital are you going to? Which oncologist are you using? I had mine done at St. Peter's. I had no problem using it 3 days later. Good luck to you.  Suzanne

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  • Fulllacewigsbyfelice
    Fulllacewigsbyfelice Member Posts: 4
    edited February 2009

    Hello Friend, if you need anything, please let me know I am a hair specialist for full lace wigs, you may contact me directly at 919-535-8170

    Mi Felice~

    Lace Wigs By Felice~Full Lace WIgs By Felice Gallery

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited February 2009

    Commercial solicitations are against the rules of this Board.  I have reported the above post by clicking on "Report this Post."

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited February 2009

    Michelle - I am glad you called your Onc. I was throwing up terribly after my first round. I just had round #2 yesterday, she ordered me IV Kytril right after my infusion. We a bit nauseous last night, but nothing bad at all, this morning I am fine. Kytril does constipate, so remember the Sennakot!! Fingers crossed that works next time!!

    To everyone feeling crappy this morning, hope you feel better soon. i am trying to focus on the fact that if it is killing all the good cells, it must be working on the nasty ones too....

    I was thinking of Apples Mouse Factory analogy yesterday while I was sitting in there wired up for all those hours. They could turn the Chemo Clinics into Spas - think how lovely it would be to get a nice pedicure while sitting in there, or even a nice leg massage...!!

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  • jancie
    jancie Member Posts: 2,631
    edited February 2009

    Kerrymac - I just spit water on my screen reading your comment about turning chemo clinics into Spas Laughing

    I am not posting much here but reading ALL comments on a daily basis.  I just don't have anything much to say since I still waiting to start my chemo this month Yell

    For ya'll that are having so many SE's - hugs to each and everyone of you! 

    Apple - you crack me up!

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  • webwriter
    webwriter Member Posts: 535
    edited February 2009

    Hey Ya'll!

    After a good cry and a long rant, I'm feelng more myself today. Hubster, after initial, and understandable frustration, was so great with me through it all. I'm so lucky to have so much support through every aspect of this! He and Monkey have gone off to explore the pitcher plant bog nearby. (Flowers that EAT BUGS, Daddy? Really?!?!)

    I Slept in late and headed out here to start re-arranging all the online finances. (Sigh, I WAS a computer geek, this is not going to be a quick job. ) Of course, I got sucked in here instead of dealing with all that so it might take a little longer too. ;)

    About Nausea: I had Aloxi for that, along with my Decadron, in the IV just prior to my TC infusion. I asked for, and got an RX for Phenergan (25mg) and Restoril (30mg). I'm quite sure we'll be adjusting for the next go-round. However, I never had nausea per se. At all. There was no warning, no queasy funny tummy feelings. Once, my mouth watered with that sour taste we all know and hate. But I didn't throw up that time. I did a couple of hours later, from my toes up, with NO warning. None. I almost didn't make it 15 running steps to the bathroom. And it went it rounds, not incidents. Same thing the next day. One marathon round, without warning, and then overwith. I'll let ya know what the adjustments are. We're SO not doing THAT again!

    Other than that, I'm good for about 4-5 hours a day. If I had to work, I'm thinkin' it would be part time and light duty. I''m really pullin' for you all who are trying to make it work. With TC, I think I need to adjust my timing to Wed., giving me Thurs. & Fri. to be a person. Sat & Sun to mostly sleep. Mon & Tues. suck pretty much, but then the rest of the week can be good for 1/2 day or so. A pondering for round two anyway.

    Just wanted to drop my .02 in there and wish all of you well. This ain't no disco, but it's still doable and we CAN do it. Thinking of you all tons. --Web

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  • webwriter
    webwriter Member Posts: 535
    edited February 2009

    P.S. KerryMac, I am so IN! Where do we get the venture capital? I'm thinkin' you're on to a million dollar idea! Well, except I'm thinkin' most of the people in my chemo room, um, well, er...might not be "enthusiastic." LOL! Thanx for the grins!

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  • apple
    apple Member Posts: 7,799
    edited February 2009

    hopefully you all will find that the first assault of chemicals is the most difficult.... very sobering to be tethered to what could be considered poisons... very mentally challenging.   once you know you will survive with having a heart attack, it seems to get easier.

    i could so go for a foot massage.. my gosh that sounds good. 

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  • gcpommom
    gcpommom Member Posts: 883
    edited February 2009

    Hello girls, thought I'd check in.  It has been a rough few days, for sure, but I am hoping to feel better this week.  I am now off the compazine and off the decadron per onc's orders (said I shouldn't need the nausea med now), and so far, so good.  I don't know which med is causing the extreme fatigue and dizziness, but it could be the neulasta I guess.  That is most troublesome, because I haven't been able to drive myself anywhere while dizzy.  All in all, though, I think I might be rounding the bend.

    I am having peculiar skin pain, though, all across my chest, just under my chest, my back and neck.  Not sure if that is from stopping the decadron???  Will see if that goes away tomorrow.

    My mom was helicoptered to the hospital last night, so it's been a tough day.  Not sure what's wrong with her yet, breathing problems, heart problems, kidney problems....  she is an amazingly strong woman, though, and is still telling me that she will drive me to my appt next week!!!  I told her I think not!

    I went to work this morning, then straight to the hospital to see her, so maybe my aches and pains are from too much activity today?

    The hospital I'm at offers massages....I've never had a massage before, maybe I'll try it.  I will be scheduling PT for my cording/swelling from surgery.  It is too much all at once, honestly.

    hope you all have a better week ahead.  hang in there furies!

    Judy

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited February 2009

    Judy - I hope your Mum is doing OK. So much extra stress to have to deal with. Actually, I have a sore chest too, all along my incision line, I wonder if it is the Chemo or the nausea meds. How amazing you get massages, I would take them up on it for sure. not sure Canada's public health would stretch to that....!

    Hope everyone is doing OK this weekend - i slept most of yesterday, just got up to eat. My Husband and i are going to catch a movie this afternoon, taking advantage of the grandparents being here! Worst thing i will do is sleep through it!!

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  • marlomom
    marlomom Member Posts: 6
    edited February 2009

    Had my first round of chemo on 2/6/09; Adriamycin and Cytoxin; tx lasted about three hours including time for blood work,etc.  I felt awful the first day home.  I was super dizzy, nauseous, and had a lot of body aches.  I felt like I had the worse flu/hangover of my life...lol - But Saturday, I felt better; just tired and had lots of "brain fog."  My friend gave me the Nuelesta (sp?) shot on Saturday a.m. Today same thing - tired, foggy.  I'm staying on top of my nausea/steriod meds, though.  My appetite, however, is out of control.   I have some exams I need to study for this week and am having a hard time concentrating.  Hopefully it will get better as the week goes on.

    Michelle - how are you?  Best wishes to all for a good week.   

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  • MicheleS
    MicheleS Member Posts: 937
    edited February 2009

    marlomom~ I'm still sick but hanging in there..  I went to mass this morning and it wiped me out.  I'm terrified of doing this again.  I don't know how I'll do it.  Glad you are doing OK.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    hello all. sorry to see you got so sick (((michelle))). hope it calms down for you soon sooner soonest! i know it's hard, but try to stay positive. we're all pulling for you.

    (((marlomom))) the brain fog is weird, eh? i'm hoping it clears midweek.

    and webbie, wt*??? so not fair about the wallet! hope Auntie A's daughter is doing ok now.

    (((judy))) hope mom's ok and up and around soon. how scary! 

    suzmarks, your tx certainly does sound like a spa day ... i'm a little jealous!

    Except for a rather lousy 4 hrs Thursday night (sennokot and I officially do NOT get along!), I've been doing pretty ok. Worked thurs & fri, had a nice visit with a friend yesterday, vacuumed a little today, napped, read, etc. - no neulesta pain, thank god. just having a hard time with the feeling of something lodged in my throat. Pepcid's not working. And tums and anything chewable and chalky make me puke on a good day, so I don't know what else to try? zantac maybe? I've never had heartburt or acid reflux before before. (and I feel horrible complaining about acid reflux while some of you are dreadfully sick ... I'm sorry!)

    My meds were emend the morning of chemo (not sure what else they gave me during the infusions), and the following two mornings, then the dexamethasone for 4 days, then ondansetron/zofran as needed. I haven't needed the zofran, really.

    Interestingly enough, in my head I think I'm off something - but if I try it, it's usually ok. (except for coffee *whimper*) I keep steering towards my comfort foods (goldfish crackers, milano cookies, why yes, my middle name IS Pepperidge farm, how'd you guess!?)... and I must needs head for more salad & fruit & veggies, this I know. I bet I'm the only one who GAINS weight on chemo, lol!

    Went back to the ativan at night. Can't help it, a good night's sleep really does help.

    tomorrow's the mr's birthday, and he's making us dinner tonite - i feel so bad, but the three of us think it's best to save a birthday dinner out at our fave restaurant until next week. i can't imagine dealing with noise or music or icky smells or drinks i can't have or, um, people right now. and i know i won't be up for it tomorrow either, after work. plus the kid has too busy a day/evening. i feel so guilty.

    soothing hugs for (((everyone))) 

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  • Grace4me
    Grace4me Member Posts: 47
    edited February 2009

    just want to jump in here to say that I just called my onc on call.............I am so jittery, feel like I got the flu, headache...........was told that the composine was causing me to feel like I was loosing my mind and the zofran causes the headache. neulesta the joint pain.....his advice is that by now I should be out of the woods as far as the nauseua is concerned so to stop takng the composine and only a zofran if needed then take pain pill for the headache........................live and learn.  I thought I was doing pretty good right after chemo, then for the last few days it has been so very hard.......keep me in your prayers as I am praying for all of you.

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  • sweeeeetpam
    sweeeeetpam Member Posts: 115
    edited February 2009

    Hi Everyone,

                  I have chemo brain I think I already joined but toooo lazy to go and look, I have finished my a/c and start taxol on thur feb 13, i have to take dexamethasone..............12 hours before and then 6 hours before????? So I have to wake myself up in the middle of the night Before chemo to take 5 pills?? anyone else doing that???

                  Please don't be scared about s/e effects everyone is diffenernt, I have not had one yet.but we shall see after thursday and I have not missed even one hour of full time work.........it is just like people you know some get the flu and some don't. You just have to wait and see!! 

                 I will say please drink lots of water or juice the day of and the night of that really helps.

    I want to go spend some time reading your posts.

           Wishing you all a great week!! Pamela 

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  • Artemis
    Artemis Member Posts: 759
    edited February 2009

    Hi, Furies ~
    Just checking in to see how everyone is and to send good wishes to out sisters who start chemo tomorrow:

    Jancie    --    February 9th, ACx4, Tx4 dd
    Kelty    --      February 9th, ACx4,  Tx12 dd   
    kisblessed -- February 9th, TCx4

    Let us know how it goes, ladies!  Drink your water and take your Colace/Sennakot/whatever!

    Hugs to all,
    Artemis

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  • jancie
    jancie Member Posts: 2,631
    edited February 2009

    Artemis - I WISH I was starting chemo tomorrow but I am not.  Instead I have a chemo orientation on Wednesday (2/11) and they will start me either at the end of this week or for sure next week.  I want to start my fight with chemo!  I feel like I am sitting around doing nothing at all other than not smoking.

    I have to get a root canal and crown done on Tuesday.  Found a great dentist that got me in there really fast once I gave them the story of chemo, etc.  I am not one to take advantage of situations but if I can play the chemo card and get a response then I will do it - such as having to get dental work done prior to chemo.  Had I just been a "normal" person I would have had to wait 3 weeks for the consult and then another 3 weeks or so to get the work done.  Instead I got the consult within 3 days (Thursday last week) an here 3 business days later I am getting my dental work done!

    I have been drinking water (laced with lemon) like crazy for the past 5 days (didn't do so well today) and am laying off the caffeine.  This is also helping me with my "want to smoke hissy fits" Laughing

    I am prepared mentally to go through chemo.  I know it will be tough but what still bothers me is losing my hair - that I know no matter what is going to really get to me.  I sound so vain when in reality I am not it is just I like my blonde hair and it makes me feel like a "woman". 

    I showed my dh two of the wigs I already purchased and he liked them.  I am going to have the hairdresser trim the bangs to my length next week.  I dread the stares I will get next Sunday when I go to church with a wig on.  Nobody would ever say anything mean but you have to wonder what their silent thoughts are.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited February 2009
    Janice - Just a word on the hair! Really, once you cut it off, a lot of the fear goes. I have always had long hair, and there were some tears when my husband started cutting it. But it doesn't look terrible, and you will look fine too! Don't leave it too late, as right after my second treatment the hair left my head in great chunks, which would have been very demoralising if it had still been long. I am very very patchy now, I think once it is all out I will actually look better. I don't even have a wig, have just been wearing scarves and hats. My husband has actually said he prefers to see me all bald, as I look more like "me", he isn't upset by it at all, if anything he finds it quite fascinating, and a little sexy! You will be fine, really! 
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  • marlomom
    marlomom Member Posts: 6
    edited February 2009

    Good morning all -

    Had an okay day yesterday.  Went for a walk up and down my street twice with my hubby and it wore me out, but I've been trying to do some very light exercises to keep my strength.  Slept okay, and woke up with a red face (not bright, but red).  It looks like I've been out in the sun for a few hours.  Probably not a bad thing since the weather here in Cleveland has been awful. 

    Janice - I gradually cut my hair when I was first diagnosed.  It's now in a cropped bob and I actually like it.  Never thought I would like having short hair.  I'm still, of course, apprehensive about losing it all. 

    Michelle, I hope you're doing better this a.m.  You and everyone here are in my thoughts and prayers. 

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  • Luv2sing
    Luv2sing Member Posts: 145
    edited February 2009

    Okay.  I meet with my doctor for my follow-up on Friday and she has recommended two oncologists.  I will choose the one that's only 5 minutes from my house.  The port was placed during surgery cause I hate needles and pain.  I don't know what type of chemo I will be receiving and I don't know what the effects will be.  My husband said he will love me with or without hair.  I've been looking at wigs that look similar to my hair and they cost more then 500.00!!!!!  Will have to find something less expensive without looking crazy.  The nearest ACS is 45 minutes away ... does that mean I can only go there to receive support?  I read in someone else's post about a wig voucher, can someone give me more info?  I have Anthem and I'm not sure if they'll pay for a 'cranial prosthesis'.  I'm extremely nervous and somehow have managed to gain a whopping 6 pounds since Friday (2/6)!!!!    I plan to go out with my husband for some fresh air today and maybe that will help me feel like being active again.

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  • apple
    apple Member Posts: 7,799
    edited February 2009

    hi luv2sing.. (I luv 2 accompany singers btw).

    I would not be in any rush to buy a wig.. you'll have your hair for weeks at least if not longer.  i paid about 130 for non human hair wig (the human hair ones are hard to take care of).   I found some great wig sites on the net.  Altho i've actually bought two, I am more comfortable in baseball hats and maybe a scarf for flair.  my first wig was matched to my old hair style and looked just sooooooo fake.

    you might want to progressively shorten your hair to experience many styles.. with summer coming a long wig would be mighty hot   .  I let my kids cut my hair every week for a while.  (tho i sported a mohawk for a day, it was great to see myself with different looks and the process made my kids feel part of it).  Before baldness, I ended up with the most adorable gamine boy cut.. i loved it and intend to adopt that new style when the hair returns...  you don't get many opportunities to try so many styles in such a short time.

    kudos to your husband for his support and best of luck  (and welcome).

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  • jancie
    jancie Member Posts: 2,631
    edited February 2009

    KerryMac - thank you so much for your loving and supportive response.  I am not waiting until chemo takes away my hair.  Saturday night my horse friends are throwing me a pre-chemo party and they are going to cut my hair short.  I was going to let them shave me bald but I don't think I can do that but they are free to take scissors and cut it 1" short all the way around - in fact we could make a game of it - everyone gets to cut a chunk of hair out!  LOL  I have 2 wigs and 2 scarves already and one of my friends said that it would be fun if everyone brought a scarf to the party for me - I sure hope so!

    Marlomom - do you have to deal with snow where you live?  It gets so treacherous sometimes to walk in our neighborhood because it is either uphill or downhill.  I love to walk but I am hesitant to do so without someone with me - I was laying in bed thinking the other night - what if I get too far from the house and then I was too tired to walk back? Do I just lay down on the sidewalk?  What would the neighbors think?  If you haven't figured it out by now I do way too much thinking - LOL

    Luv2sing - I went to a wig shop and got two synthetic wigs for $50 each.  The wig shop gives a 20% discount to chemo patients.  Oh yes....going to take advantage of playing that "chemo card" if it means faster service and less money.  One of the wigs I got was made by Forever Young - model name "Sugar Rush" and then I got one by TessAllure called Flan but that one has been discontinued.

    It is so simple to take care of synthetic wigs - you don't need to take them to a salon to get them styled, you don't have to sit there and put rollers in them, etc.  The style they have when you buy them is the style they retain even after washing.  They last 3 to 4 months if you wear them a lot.  You just swish  them in the sink with shampoo provided by the wig shop (don't use regular shampoo) -  rinse extremely well and let them dry before you brush them out.  Mine look and feel like real  hair.  I purposely got wigs with bangs because I wear bangs now and fairly long so normally you don't even see my eyebrows - this way I maintain the same "look" and when my eyebrows go - most people won't even notice.

    Now I am going to wait until I chop my hair to go to my hairdresser and have her "trim" the bangs as they always come long on the wigs but I was told to not have anyone restyle the wig as far as cutting the length off, etc. as it prevents them from going back to the original style.  Can't remember the actual term the wig shop owner said.  One wig site on the internet I liked was Wilshire Wigs.  I would if possible go to a wig store and try some on so you know what will look good on you.  I am having a hard time matching my hair color. 

    Apple - I am going to be wearing scarves and hats more than my wigs but it is fun to play around!  Besides I can tell my husband that he should like the fact he has something "different" in bed - ok TMI for some people - sorry.

    Can't wait to share some war stories with ya'll once I start chemo!

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  • webwriter
    webwriter Member Posts: 535
    edited February 2009

    Just a note of upside for those (MicheleS, how are you doing?) in the downside. I got myself showered, dressed and off to PT this morning, no problem. I also went on a seriously needed grocery shopping spree. Then I stopped by the health food store. After which I unloaded and put it all away, got Monkey down for her nap, organized the week--packed the ballet bag, got the school payment ready, blah de blah, and posted a quick note here. There IS life during chemo!

    I hope all of you are able to enjoy some sunshine today too.

    Love,

    Web

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