January 2013 chemo group

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    duckiedee thank you for finally describing what I am experiencing with my tastes. I tell people that there is an awful, lingering, constant after taste in my mouth and they all still reply "Oh, so you can't taste?" No dumbshit, I CAN taste, but everything tastes like ASS!!! Sorry, my suttler, more mild side is still in the kitchen looking for dinner.

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  • LeeA
    LeeA Member Posts: 1,660
    edited February 2013

    Skimommi, you always crack me up! 

    And congratulations, duckiedee on being so close to the finish line!  We're on the same cocktail (TCH) but i'm one behind you.  

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  • Jubby
    Jubby Member Posts: 85
    edited February 2013

    Oliverhog - hoping your tests went OK? Fingers and toes crossed. Keep us posted.

    Dead skunk and ass is a good analogy. I have a girlfriend that describes the taste in your mouth after a hangover as tasting like the bottom of a budgie's cage. I think I have been licking a few cages. It's hideous and so hard to descibe to others. Nothing tastes good.

    Today makrs my chemo upswing - yay. I have energy back. I went for a walk tonight along the beach and wore my wig. Will have to rethink the wig walk and get a cap to keep it on. It was a windy night and I got back into the car looking like 'Animal' from the Muppets. A fright.

    Is anyone else also seeing their Dad in the mirror? Without hair I look so much more like my Dad.

    Bryona, are you on the up? Hope so.....

    I also want to share this link about an actor here in Australia and a ride he is doing on a unicycle for his sister with stage IV breast cancer. It's the most amazing story. I know the actor will have little meaning to you all in the States and Canada but the YouTube video will touch anyone. http://loveyoursisterorg

    Be warned, it will make you cry.

    Watching it tonight helped give me perspective on my treatment. It's bad, but there are always others in a worse predicament. I so hope he succeeds in reaching his goal.

    Ciao for now and hoping those having treatment this week are OK.

    xoxoxo

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  • Jubby
    Jubby Member Posts: 85
    edited February 2013

    woops. pasted in the wrong hyperlink. http://loveyoursister.org/

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  • Fighter69
    Fighter69 Member Posts: 55
    edited February 2013

    Morning Ladies . 

    I am so happy that I was able to encourage someone and you do the same for me . With laughter and inspiration that makes me feel great! 

    Second sesson was yesterday did not feel bad at all as a matter of fact my daughter and I went shopping and instead of taking the bus we walked the 6 blocks needed to get there . But , when I got home I ate and went to sleep . Woke up this morning with a slight headache and  I feel dehydrated but other than  I am doing good. 

    As soon as my chemo was over and I got home I took an entire capful of Pepto mann did it helped . Doc said my blood work was excellent have to go to the doc today to get the naulesta shot. 

    Sending out Positive thoughts and well wishes for all of you . 

    Fighter

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  • Zorina
    Zorina Member Posts: 103
    edited February 2013

    Made it through A/C #4 without a hitch.  (My white cells were good, temp was very good!)  My dance with the Red Devil is over, and I am half-way through chemo—SO TAKE THAT INSURGENTS! 

    A/C and T Gals:  My Onco Nurse did tell me that my taste buds and hair will begin to return while on Taxol.  She also said nausea isn’t an issue with Taxol.  I am a strange person, so bear with me, but the return of my hair was not the best news I got yesterday.   The best news was that my taste buds will return because  I hate it when chocolate taste like the remains in a cat litter box.  I’ll have to work to kick the bad eating habits when I get them back, though.  I am not going to have any excuses.

    Skimommi, you have echoed my thoughts exactly: “I've questioned and wondered whether I will reinvent myself somehow, or just trudge on. I'm definitely trudging on right now because I just want to get through this sh!t.”   For me, it’s not just the eating habits (I bought pop-tarts the other day, for cripes sake!), but my whole perspective on life.  Yet, much like the eating habits, I think the only thing I can do now is just trudge through this as fast as I can.  I am envious that you feel the courage to start planning trips and other activities when you return from your journey down the rabbit hole,  but I just haven’t been able to plan much.  Ideas exist, but I don’t feel I can commit to anything, yet.  I also don't feel like a survivor yet and cannot get into all of the cheerleading and Pink, but for now I do trudge with purpose.

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  • 3littleangels
    3littleangels Member Posts: 16
    edited February 2013

    Zorina - Congrats, you made it through the toughest meds!!! Great job!

    Oliverhog- prayers and hugs to you for some good news, you are truly an inspiration for all you have gone through and how tough you are, pulling for you and for good news!!

    Tx#3 done one more AC to go!!  WBC good RBC not so good - anemic so I guess the energy level will continue to be low ....no nausea today and hope it last through Wednesday at least!!  Neulasta shot this afternoon - yuck!

    Best of luck to all who are being treated this week and lots of happy thoughts for good test results to all!

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  • Zorina
    Zorina Member Posts: 103
    edited February 2013

    Is anyone else going to do the dose-dense Taxol? I start on March 7. 

    I know there  is a group for weekly Taxol, but dose-dense is bi-weekly.  I am hoping I can sustain the dose-dense.  MO said each dose-dense is equal to three weekly treatments.  I just want to get chemo done as soon as possible and hope I can sustain dose-dense.  If I cannot, they will move me to weekly.  

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  • kimmeam
    kimmeam Member Posts: 10
    edited February 2013

    Round 3 has just about knocked me out totally! Thursday was my 3rd TC Friday was the neulasta shot. By Friday night I could hardly move. Yesterday I finally started feeeling well enough to make my husbands birthday cake & tacos for dinner; with help from my oldest son. Yes my husband really doesn't care about his birthday & did not want me to do anything that would make me feel worse. Thankfully my son did most of the cooking.

    This 3rd treatment has been by far the hardest on me & everyone around me too. It felt like my feet were going to literally shatter when they hit the floor. My legs & knees hurt so bad I was  certain that I would fall (thankfully I did not). I slept from like 2pm on friday when i returned from gettuing the shot until sunday night. I would wake up every few hours to either shower eat or take pain meds or watch a bit of tv but not much else. I literally could not keep my eyes open. I honestly don't think I can handle any more pain than that. I am taking claritan but maybe took it too late to help. I took it on saturday & the shot was on friday. My mouth feels like i've been chewing on hard crucnhy toast & is so sore. Yes I am rinsing with warm water baking soda & hydrogen peroxide. My taste buds are gone. I am so hungry though. It's hard to eat when nothing tastes good.  Maybe that is good to keep the pounds that I keep gaining away. My iron level was very low the day prior to chemo this time ; perhaps this is why I have not been able to keep my eyes open. She said that I may need a transfusion this time if they get any lower. Since I am starting to feel half way human I won't call; unless of course it gets worse.

    I was so excited for the Look Good Feel Better class. The one in my area was kind of a joke. In my bag of goodies I ended up with juat a few things that I could use. For the most part yes it is good make  up if you can use it though. Being with the other women was the best part by far.

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  • LeeA
    LeeA Member Posts: 1,660
    edited February 2013

    Zorina, congratulations on hitting the AC finish line!  The dose-dense weenly Taxol sounds intense but I understand the desire to get all this in the rear view mirror.  

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  • LeeA
    LeeA Member Posts: 1,660
    edited February 2013

    Kimmeam, how many TCs do you have total?  I have six TCH (carboplatin/taxotere/herceptin) then on to Herceptin only every three weeks through December 2013.  

    I bounced back quicker (I thought) with TCH number three (treatment was last Wednesday) but started feeling very weary yesterday.  I actually think I felt more energy the day before (Sunday).  Strange that, because with the other two treatments it was a steady upswing.  I'm wondering if a big cold front moving in isn't contributing to this slug-like feeling.  I'm sensitive to barometric changes so perhaps this weather thing is a factor.  

    I hope you can avoid the transfusion but I've also heard that people feel really great after getting one (energy-wise). 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    Jubby you made me laugh out loud at the image of looking like animal after a windy walk in your wig.

    kimmeam you should start the claritin sooner. It needs time to build in your system and maybe that will help next time. I start the same day, but have been told to start as early as a few days before. This time I had more bone pain than at any other time, so I'm thinking I too need to start earlier.

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  • kimmeam
    kimmeam Member Posts: 10
    edited February 2013

    LeeA I will have a total of 6. The first 2 were so much easier

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  • smethot
    smethot Member Posts: 161
    edited February 2013

    Zorina- i'm on dose dense AC & T...x4 & x4...16 weeks total.  My MO seems to think the whole deal is no big- so that's my attitude, too!

    OK...i got the hair cut on Saturday...i kinda look like the bad-god Zuul in the original Ghostbusters...either that or my little brother.  Women as small as i am shoud NOT get boy haircuts if they want to continue to be regarded as women...sad but true.  I also got THE WIG...and it looks pretty good.  The colour match is dead on and the style is something i could have cut the hair i had into...its a little poofy but wearable.  Except for one thing.  I feel like an imposter.  I really, really don't like it.  The whole "wtf died on your head", weird Uncle Larry's bad toupe and i feel as conspicuous as an elephant at a tea party thing x1000.  I just couldn't do it this morning.  I wore my newsboy hat to work (I like it and it hides the Zuul-cut) and that feels ok to me.  My mom (very girlie) thinks i should ovary-up and put on THE DAMNED WIG but honestly, i don't think i can do it.  Spend $300 (which benefits will pay cover) for a stupid wig i refuse to wear...brilliant.  I just didn't think it would feel so ODD.  Everyone ignores my hats (i'm gonna premiere the bucket a la Paddington Bear tomorrow) but THE WIG???  i just can't fathom it...

    i'm telling myself its a matter of MY comfort.  I don't like turbans or bandanas or seemingly wigs but the hats feel ok...bought them on-line at Headcovers...great site.  I might buy more...but this is ALL about me and the stupid, nasty wig can sit in the stepson's closet (the only one with room- my stepson calls it his "company") and gather dust...right now, i don't feel like i'll EVER wear it.  Anyone else???

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  • LisaMM
    LisaMM Member Posts: 120
    edited February 2013

    Smethot- you made me laugh & I needed that today! Mine is coming out in big handfuls today so I'm trying to work up the courage to get the clippers out because it's just making a mess. I also have a wig, but I like it. It does feel odd wearing it, almost like a hat for me because I've never been one to wear hats. Guess I'll get used to it, a hat isn't really appropriate at work for me. Go with whatever YOU like! Your ovaries will like it no matter what!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    Zorina~I finished AC on the 8th. My only SE was the Dead Skunk tastebuds. I start weekly taxol 3/1/2013. I'm with you. I'm looking forward more to the return of tastebuds than I am hair, though that will be a great benefit too!



    Yea!!!!! We made it!!!!! We Beat the Red Devil!!!!!



    Blessings

    Paula

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  • hope49
    hope49 Member Posts: 370
    edited February 2013

    Congrats Zorina and Paula on beating the Red Devil!  I know that's a tough regimen and I am happy to hear you are both on the 'other side'!!!

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  • SherylB
    SherylB Member Posts: 450
    edited February 2013

    kimmeam,

    Just a thought on your mouth rinse. Hydrogen Peroxide actually destroy new fragile cells. Most all I have read say to use baking soda 1 tsp/ salt 1/2-1 tsp/ and 8oz of water, and rinse 3-4 times per day everyday even when mouth is ok. In healthcare we stopped using peroxide to clean wounds many years ago because of the destruction of new cells. Wounds are just cleaned with sterile saline. The sores in your mouth are sores. The American Dental Association recommends baking soda/salt/water. A chemo nurse told me to use the rinse even when mouth not sore so that it would be on board when the chemo hit.

    Hugs, Sheryl

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  • Zorina
    Zorina Member Posts: 103
    edited February 2013

    Semthot - I never bought a wig and would never have worn it.  Around home, I am naked unless it is cold, but in Florida that means I am in 'nude' much of the time.  I always get really warm when I get the cytox, and yesterday I wore a really warm hat because it was a cold day.  I kept stripping off blankets and finally DH told me to take my hat off. What the Hell, I am in a damned chemo room, this shouldn't be a shock to anyone.  I felt much more comfortable.  The way the room is set up, not many saw me, so I guess I was kind of disappointed to have not horrified anyone.  Ha Ha.  Don't buy the wig if you don't think you will wear it.  Where whatever you want..even if it is nothing.  This is all about you!  However, Ontario in February probably isn't a good time to go au natural even though I think it is grand.

    Soteria, you are my canary (possibly Nichole, too) I will be waiting for your first dose dense Taxol report since you are a week ahead of me. And it is so good to see the Red Devil in my rear-view mirror!  I think that alone will reduce the strength of my SEs this time. Sometimes the mind does work over matter.

    Heading out for my Neulasta, a restorative cocktail of fluids and a nap at the spa...

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited February 2013

    smethot- The wig thing - I only wear mine when I work. Not much of a choice for me as I am behind a bar. I felt very strange the first time I had it on. I felt like I was walking around with a huge neon sign that said "HEY, I HAVE A WIG ON... SEE!!!?" It took a bit for me to get used to it. I am looking forward to the time when the 50 hairs that are left on my head are more like 200. Then I can maybe NOT wear it!  Until then, I wear Cousin It to work... and for now it sits on the stand in the bathroom on a shelf like a taxidermy piece.

    Big hurray for Paula and Zorina!!! Glad to see you on the other side of the red devil... On to the next battle!! I cant wait to have my taste buds back. Everything tastes like plain oatmeal. yuk.

    Feeling tired today. I started work last week. I rested on Sunday and decided to ski on Monday. We only went for a few hours and today I am shot! Usual soreness from being the first time out and the exhaustion from not doing anything for a few months!!

    My right eye still twitches and they are watery. MO says to chew on a TUMS. I know eye twitches can be a sign on calcium deficiency, so, ok why not!! She also said that is a sign that my eye lashes were loosening up and I will loose them soon. I have noticed them becoming thin. Bummer.

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  • duckiedee
    duckiedee Member Posts: 45
    edited February 2013

    I have a wig that my insurance paid for. (It was VERY expensive!!!) But I only wind up wearing it one day a week to church. I call it my "Sunday hair." haha! And the main reason I wear it then is because I sing in the choir. I feel that if I was up there in my choir robe and a hat on my head, I would stick out like a sore thumb. And it could distract from worship. The whole point of church music is to take the attention away from self and toward God.

    It's a nice enough looking wig, and I get lots and lots of compliments on it. But it is itchy and uncomfortable on my little bald head, so I can't wear it for very long at a time.

    I say - wear whatever makes you happy. I have tried scarves and buffs, but I wind up looking like a biker chick or something. (Totally not me!) So I rely on several cute and comfy hats. I have a denim blue bucket hat. (reminds me of Gilligan- remember that, baby boomers??) But it looks cute on me. I also have some pretty knit cloche type hats with a little fake flower on the side that are adorable. (Both from TLC - American Cancer Society) I have a few others too. But wear whatever feels good, ladies!

    We are beautiful and strong. We can do this!!! 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    Shannon I bought my wig for over $400 and wore it for a total of 1 hour. I yanked it off at a bar (yes, literal) just after having my head shaved and buying the priceless piece of jewelry and never put it on again. I sport head wraps in the office. I felt the exact same as you. At least in the head wraps I feel like I am not trying to cover up the fact that I am bald. In the beginning I never thought I'd be able to get used to wearing the head wraps either, but I've come to love them. This is not to say there is anything wrong sporting wigs, it just wasnt for me. I've seen women that look amazing in a wig and you would never know the difference. But as you said, this is about our own comfort. I've actually toyed with the idea of getting one of those halo wigs. One of the girls posted a pic on FB wearing one with a cute hat and it seems like fun.

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  • LeeA
    LeeA Member Posts: 1,660
    edited February 2013

    Shannon, I can identify with the word imposter regarding the wig.  For some reason, that's what I feel like when I put it on and I can't shake it.  More than that, it feels uncomfortable and if I'm not feeling 100%, and let's face it, who feels 100% during chemotherapy(?), I feel even more uncomfortable wearing it.  

    I don't want to feel that way in it but I do and yes, it cost quite a bit and I feel like I got kind of ripped off with it (long story) but the insurance company did pay about $100 toward it.  Today I am wearing a Buff.  Most days I wear ski caps.  I'm home most of the time so it doesn't really matter but the only time I go naked-head is when I go to sleep.  I set the laptop on the night stand, take off my glasses and take off my cap (and settle down for a not so restful nap).  

    I concur with Skimommi.  The halo looks very good with the cap one on of our January comrades.  I've seen the photo on Facebook and she looks great in it! (there's a subtle advertisement for the Facebook group Kiss).  I might end up ordering a halo at some point.  

    I think it's great that some women feel so comfortable in a wig.  I really wish I could get there.  

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited February 2013

    I say if you can go without it then go without it! I have no idea what I am going to do when it gets warm out. I wear a fleece ski cap or buff when I am outside right now. When the warm weather hits I am going to hate that. I am hoping enough hair grows back so I don't have to wear anything in the late spring.

    dickiedee- I like the 'sunday hair'... So, mine is 'work hair'. lol I like it! The first wig I got was awuful. It was so itchy and uncomfortable. I haven't put it on since I wore it home.  The other one is better. It has a face front which makes it feel less binding on my head. And it looks more natural I guess.

    I say we have a wig burning party when this is all over with. Or wait... Who suggested the birds nest?

    Lee- I ordered a halo one too. looks like that might be fun when I do wear baseball caps.

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  • LeeA
    LeeA Member Posts: 1,660
    edited February 2013

    Skigirl, I'm looking forward to seeing pictures of you in your halo! Innocent 

    Work hair, church hair - I plan on taking mine to go out to eat in while we're on vacation so I'll call mine vacation hair. 

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  • smethot
    smethot Member Posts: 161
    edited February 2013

    mine's "closet hair"...i'm afraid the cats are gonna get at my wig and destroy the "intruder".  I really thought i'd like the wig...and i was trying to explain to hubby at lunch why i DON'T...i think i'd feel different if no one knew i was bald...but after surgery, once i knew my path forward, i went ahead and told everyone at work, home, family, etc.  Everyone knows i'm doing chemo- a co-worker actually tried to look UNDER my hat today (and got told to "f*** off- i still have hair"- how rude!).  So i really do feel like i'm trying to "hide" something wearing the wig...its not like i'm fooling anyone...they all know i'm soon-to-be bald...why the ruse?  It just feels more honest to me to wear my hat...its a chemo hat...so it sits low over my ears and covers my hairline...but its honest.  The wig feels like a bad toupee...i know it looks fine but it feels creepy.  Screw it...wig can live in the closet...wearing my hats and be done with it.

    And i agree summer is gonna suck...although all 3 of my hats are spf 50 protection!  :)

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  • honeybair
    honeybair Member Posts: 746
    edited February 2013

    Went out and bought a wig before losing my hair.  It looks good according to my friends, but i do not like to wear the itchy, ill-fitting thing.  So I wear cotton turbans plus two cotton hats whenever I go out in public.  Never knew the hair loss would make me feel so cold so the turbans are on all the time.

    I am anemic and very tired and tomorrow is AC No. 2 for me if WBC holds up.  My port placement site is still very sore so am wondering how that will go.

    Just wanted to share that I was advised to take claritin and alleve the day of infusion and take the same the next day.  These two meds really helped and I had no muscle pains at all.  Did experience queasiness, lack of appetite and just felt like hell for the next three days.  Guess this is to be expected.

    So glad we can all share helpful solutions for one another.

    We will get through this and get our lives back.  

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  • ywheels22
    ywheels22 Member Posts: 230
    edited February 2013

    Zorina: Awesome you are done with AC! I have round 2 of AC tomorrow and I am on dose dense 4x, every other week, then I start Taxol, dose dense, 4x, every other week. Keep us posted on how you do.

    I have not lost hair yet, but tomorrow is day 14 so I suspect it will start falling out in the next few days. I have noticed that the hair down south has been falling out. I honestly thought the hair on my head would be the first to go. Too bad the hair down south can't stay gone!!

    About 5 days after my first AC treatment the suck ass taste in my mouth went away. I wonder if that will be the same each time. It really is just disgusting and I love all your descriptions of how you think it tastes. I can't better any of them so I won't try.

    I too suffered from terrible pain after the nuelasta shot. My MO and nurse both said it was from that and not as much from the chemo. I got a pain killer (perceset) for the rest of my treatments. I did take Claritin and I will again but am adding the pain med and hoping that helps. It was pretty bad for 36 hours. Lots of pain and aches from the inside out, could barely move to go pee. I, however, did not have any nausea, which is a plus!

    Good luck to all of you!

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  • LeeA
    LeeA Member Posts: 1,660
    edited February 2013

    honeybair, good luck tomorrow on the counts and the chemo!

    ywheels22, my own southern hair (I love that, btw - the expression, not the hair) remains and I am on day 48.  I could still feel some hair on my legs last night when I took a hot bath so I shaved them.  Maybe it's a phantom sensation (feeling hair there).  Good news on no nausea.  Re: Neulasta - ColleenKelly's oncologist didn't give her the full dose (I'm not sure if you read that or not).  I had the full dose and took generic Claritin and some Tylenol and didn't seem to have what I would think of as long bone pain.  Just that weary-@ss post-chemo slightly queasy feeling.   

    shannon, how utterly rude (the person trying to look under your hat).  Elbow room.  Head room.  It should be sacred (or something). 

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  • cancernoway
    cancernoway Member Posts: 90
    edited February 2013

    I prefer buffs and hats myself, but I did purchase a wig from voguewigs.com (the price was unbelievable and it was close to my real hair before all the cutting, shedding, buzzing, just a little longer.  We have 4 weddings this spring and a couple graduations.  I took it to my step daughter (also my hairdresser) because I didn't like the bangs and had her fix them.  Well I decided to wear it to the grocery afterwards just to give it a try.  It's itchy as hell and I've started hot flashing so it was hot often.  The funniest thing was this lady came up to me and said "Have you seen the Millionaire Matchmaker show?"  I said, yes.  And she says, "You look just like Patty on that show."  I cracked up dying laughing and thanked her.  Sort of made me feel like I wasn't wearing a dead cat on my head, but doesn't make me want to wear it anymore than I have too.  Especially when hats and buffs are sooooo comfortable.  I agree everybody should just wear what makes them feel the best and is the most comfortable.  We have enough crap making us uncomfortable at this point, we don't need something else. 

    I use the salt water/baking soda rinse as well, but also add in Biotene rinse several times a day.  It doesn't have any alcohol and it protein and enzyme rich.  My MO recommended it and it really helps with the tongue pain.  Not so much with the taste buds, I think they are hosed until week two regardless. 

    I didn't have the crappy Post Day 3 like last time, thank goodness.  No puke day.  Just had drop ass which I will so take over throwing up for 36 hours anytime.  After Neulasta my body did hurt like it had been hit by a Mack Truck, but I took a Norco and it helped a lot.  That lasted about 24 hours and started to feel better. 

    There are so many woman here that are an inspiration to me.  Each day I get a boost by reading what everyone is doing and by how everyone is feeling and by knowing that I'm not in this alone.  I love the stories and quick wit and all around comraderie.  I'm thankful everyday that I have all of you. 

    Here's hoping that all of you heading to the bar this week have an uneventful time and that all SE's are minimal and manageable. 

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