April/May 2012 Chemo hang out

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  • kjiberty
    kjiberty Member Posts: 1,385
    edited June 2012

    Doris:  Thank you and good luck with the crash.  Sounds like you go exactly through the same thing I do. I swear my couch is going to get a hole in it from my butt.  Or at least a permanent indentation!

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  • SaturnRing
    SaturnRing Member Posts: 36
    edited June 2012

    Hi everybody,

    Long time lurker, finally deciding to join the group.

    I am done with my AC cocktail and will be starting weekly Taxol on Jul 12th.

    This thread has been very informational, Thank you for that.

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  • SaturnRing
    SaturnRing Member Posts: 36
    edited June 2012

    One question I had for you ladies is about the hydration. What do you drink?

    my only very bothersome SE is that I hate water, any type of juice etc. I am constantly hunting for something to drink to keep me hydrated.

    so far this week my fav has been homemade Mango Ice tea.

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  • kjiberty
    kjiberty Member Posts: 1,385
    edited June 2012

    SaturnRing:  Welcome!

    How about water w/Lemon in it?

    Lemonade?  Iced Tea, I like drinks called "ice"  they have no calories, and are very very lightly carbinated.  Different flavors.  It's like selzer water but better.

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    My MIL doesn't throw anything away.  She came over the other night with a ski hat someone had made for her out of Angora 50 years ago.  It was very cute, but can you imagine putting on something that warm at this time of year?!!!

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  • vballmom
    vballmom Member Posts: 426
    edited June 2012

    Hi SaturnRing - I struggle with the drinking, too.  I used to love Vitamin Water and diet iced tea, but I am not drinking anything with artificial sweeteners except stevia now.  I've been making my own tea and have done with seltzer. I actually didn't like seltzer before, but now that my tastebuds are whacked, I am drinking it and liking it. Lemon or lime does seem to help.  I'll be having my last AC Monday and starting Taxol next.  I actually started a chart to track my liquid intake. I'm sure I am not getting enough.  Oh - I made iced coffee with a lot of milk in it.  It was more like dessert than a drink, so it felt like a treat.

     I worked a few hours yesterday. It felt good.  I made a really nice sale from just a simple email.  I know our income has been suffering since I have basically checked out and I need to motivate myself to do better.  I will go in again today after my neupogen shot.  Hope my counts are better tomorrow.

    My pulse was racing last night and it kind of freaked me out.  It was up to 110 or so. Usually I am in the 70 range. I am 80 this morning.  

    Did anyone else NOT lose all their hair?  I buzzed mine but now I am a little sorry.  It stopped falling out and I still have quite a bit left. I could have kept a pixie, I think.

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  • SaturnRing
    SaturnRing Member Posts: 36
    edited June 2012

    Thanks KJiberty, vballmom, I am off to finding that Ice drink and seltzer water.

    Lemon with water didn't help for me as I am sensing some kind of a weird bitter asfter taste.

    vballmom - Same here, after the second AC I buzzed my hair, but hair fall seem to have stablized and I still have stubbles all over and looks like they are even growing. I do have spots of baldness here and there, so I don't think I could have sported a short cut/pixie etc. But hoping with Taxol, it will keep growing.

    BUT...I actually LOVE my wig, lot thicker and straigher than my original hair, LOL. So may be not that much regrets!!!

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  • DorisMarie
    DorisMarie Member Posts: 129
    edited June 2012

    hi santurn..welcome..good group here..

    I didn't buzz cut..got the ostrich look going on..seems like longer hair(I keep a short cut anyway) has all come out..left with very thin..almost all white..shorter hair..ah well..the new me..LOL..

    we have a chart on the fridge..I get a star every time I drink..usually just water..my choice of beverage..only way I can keep up with how much..handy spot to write down meds too..

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  • TriChick
    TriChick Member Posts: 56
    edited June 2012

    Of course, "there is an app for that!"  iHydrate, Water Intake and Hydrate.  My husband had installed one on my phone and gave me outrageous daily goals.  Really ridiculous goals until I finally snapped and told him to take my chemo and then see how much water he could drink in a day!  He laid off.  I lost my taste for water almost immediately after my 2nd A/C treatment.  I drink lemonade (minute maid light 5 kcal) with either a splash of iced tea or a splash of cran/raspberry.  And most of the time I can handle club soda.  I am at the point now where I can do small amounts of water throughout the day if it is cold.  Weird.

    I am getting more and more depressed about being bald, being sick, having mutant looking tissue expander boobs...blah blah blah...It is just all too hard to comprehend sometimes.  At the beginning of this I figured once I got here (treatment #7 of 8) I would be jumping for joy!  I am not, I am done....mentally, physically done with all this.  I want my hair back and I want my life back!  Sorry for being such a drag....thanks for listening....

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012

    SaturnRing - welcome!  I drink a lot of decaf green tea - decaf so that the caffeine won't hurt my sensitive tummy - and green tea b/c of the incredible antioxidants in green tea.  You can make iced decaf green tea, too.   I also drink a lot of skim milk.  Gentle on my tummy and good source of calcium.  I cannot tolerate juices b/c of my acid reflux.  I do drink a lot of water, too, though. 

     vballmom - stevia is the only sweetner I use currently, too.  Don't trust the other ones, and sugar is a big no-no for cancer survivors.  

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  • DorisMarie
    DorisMarie Member Posts: 129
    edited June 2012

    trichick..hang in there..almost thru..then hair will be back in about 3 months..I hear..then nice new perky boobs..

    big hugs to you..

    I don't get perky new ones outta this trip..still got the old ones..but did put in order for red curly hair when is grows back..daughter says not very probable..I had salt and pepper grey..blonde when younger..told her it was not "probable" for me to get this triple neg cancer either..so I'm hoping for that perk..

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  • lisa2012
    lisa2012 Member Posts: 652
    edited June 2012

    Feet peeling; mine have been around the heel and the ends of a few toes. Fingernails sensitive but no hand peeling. I've been doing the Aquaflor/sock at night thing. I woke up in the night because my toes were hurting- and my poor fingers could barely manage to get the socks off! The pressure of the socks touching my toes was too much.



    Is it funny, is it stupid, it just is. Took half an ambien and went to back to sleep.

    Anyone deal with this?

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  • rgina
    rgina Member Posts: 100
    edited June 2012

    Morning all,

    No time to catch up, my job is slamming me, worked 10 hours yesterday and looks like I'm headed that way today.  But wanted to give you all a head's up on a product that a friend highly recommended and is bringing me one this weekend.  It's a cool cap that fits under a hat and it might even work under a wig?  Since I have to be outside in this relentless heat to take care of critters, she thought this would help keep me cooler, she spends most of her day working outside and it helps her a lot.  Anyway for what it's worth here is the link to the product https://www.coolmedics.com/products.php?product=Adult-Cooling-Cap-%252d-1310

    Everyone take care, mild SE's to all.  Be back soon (I hope):):)

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  • lisa2012
    lisa2012 Member Posts: 652
    edited June 2012

    TriChick, I get it. I'm glad on most levels to be done with chemo, but still dealing with bullshit. Side effects. And now wondering if it was the right chemo, did it do anything, how will I know. And in a way not wanting to know because I don't want to do more.

    And hey, good morning, beautiful day in coastal California. Going to plant pumpkins and basil today with DH .

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  • nofear2012
    nofear2012 Member Posts: 160
    edited June 2012

    Trichick - I postd yesterday about how I was feeling so ready to be done w this. July 18th is my last chemo & I am ready to be done. U are not alone in how u feel as we have all chimed in that chemo is a struggle. What helps me to know is I am not alone in the struggle as u are not either. It will be over be4 we know it. Hang in there.

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012

    vballmom- Hope you are doing well today!!!  I did not buzz my head to the scalp.  Instead, my DH gave me a very short short boy hair after I snipped off the five pony tails I made from my short bob hair cut.  At that time, I knew I couldn't handle going totally hairless so I took the next step and just wanted to see out of curiosity what chemo would do to make hair.  I'm glad I didn't cut it off.  I still have some hair all over like a thin veil of hair and stubs growing out.   Some of my hair stands straight up and it looks pretty funny.   I have 2 more rounds of chemo left so no telling what will be left.  I have some wispy bangs in the front and back so i can wear a hat and still look like I have hair.  I love rubbing my head and feeling what little hair I have left--- sort of comforting.  As I report in to my onco's office every week for an update for the clinical trial--- my hair aka Elvis has not quite left the building!!! 

    My pulse is a little higher these days so the onco and internist are watching it.  Hope it goes back to normal once chemo is over.

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  • SaturnRing
    SaturnRing Member Posts: 36
    edited June 2012

    Lisa2012 - now that you are done with the chemo regimen, what is your follow up regimen with MO look like ? Every 3 months ? every 6 months ? Scans ? Tumor marker blood tests ?

    Also, did you guys discuss about when the port will acutally be removed ?

    Just curious to know more .... if you can share :)

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  • Gemmie
    Gemmie Member Posts: 103
    edited June 2012

    Good luck today and miimal to no SE's to Stacie and Kjiberty. Last one Kjiberty!  Super !!

    FightiingLikeaGirl--no way! Thrush in your nasal passages? That's just WRONG!

    Vickilin, glad you are safe ad ope hubby is too.

    Kjiberty--I think I could compete in that pissing contest b/t you and Marcia for scarves, headcovers, hats, wigs, etc.  I donated five (yes, five) wigs to my cancer center two weeks ago.(I've always been into wigs---long b/f cancer)  These were "old" ones i haven't worn in awhile.  I still had five left. Then, since my diagnosis, I've been online ordering so much cute stuff for headcovers. It's been retail therapy for sure.  What I don't want later I will donate.  But lots of the larger size scarves I can always wear on places other than my head!
      Looking forward to the liberation of no hair. My app. is in one hour!
    Blessing for a good week to all.
     
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  • RoulaG
    RoulaG Member Posts: 239
    edited June 2012

    In the big girl chair - good luck to all - hears to minimal SEs.

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  • mary71145329
    mary71145329 Member Posts: 133
    edited June 2012

    saturnring--welcome. I too have problems with water intake after infusion. I can get it in fine the day before, day of and day after but that's about it. As soon as the funky mouth tastes kick in--no more water. I did try MIO--it's an additive with no sugar, calories or fat. Just squirt it in the water and the taste is tolerable to chug the bottle. Not sure if it's actually good for me or not but it helps get the fluid in and that's the focus right now.

    vballmom--I haven't lost ALL of my hair however I know there is no way I could have not buzzed it and gone out in public! lol I have many bald patches and that makes it impossible. When we buzzed it, we used no guard but I was left with fuzzy patches. As the weeks have gone on, I see more and more shine AND some longer hairs that seem to be growing(of course they're grey...that figures :( I'm not going to shave it. I'm just letting it go and see what happens.

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  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited June 2012

    I'm kind of where a lot of you say you are, hair wise - I look pretty shiny but have stubble you can feel ( and see up close).  It is pretty well white.  I think I would have looked patchy and thin if I hadn't buzzed it off, but as a lot of you are saying, it never did all fall out (yet, anyway).  My eyelashes are almost completely gone, though, and I just have tufts of brow hairs close to my nose.  Funny how this works.

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    YAY MARY71!!!!!  Glad you have joined the "Just Say NO to More Hair Buzzing Club"!!!!  I love to hear that your hair is growing and maybe the peach fuzz will be coming soon!!!!
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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    IndigoMont- Hope you are doing well after your last chemo.  Got to get to the grocery store to get some food to help with my red blood count.  Hamburgers and steak here I come!!!! HUGS to you!!!!
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  • vballmom
    vballmom Member Posts: 426
    edited June 2012

    My neutrophils are 27,500!  Up from 800.  No wonder my bones hurt!

    I went out with my wig, make-up and real clothes on (as opposed to sweats).  Stopped in to see hubby and I know I made his day to see me looking well.  My nurses went crazy when I came in.  Nice to feel somewhat normal.  Now I am ready to nap.  Cool

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  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited June 2012

    Several of you mentioned craving carbs; me too.  I have had that nasty bitter taste on my lips since my last tx, and the only things that have tasted very good to me the last several days are salty and sweet; not so great for trying to get down some protein.  I decided just to try making a smoothie since I have two big bags of frozen strawberries and blueberries handy.  Put in a banana, a good handful of the strawberries and blueberries, and maybe a third or a half cup of nonfat unsweetened yogurt (I just spooned it in).  I got the bright idea to add sugar free French Vanilla coffee creamer for sweetness and flavor.  FWIW, it tastes pretty good and is nice and cold going down on this hot day. 

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012

    Yay vballmom!  Not for the bone pain, obviously, LOL.  Mine went up to 49,000 one time...yeah..one too many Neupogen's there!  Eeeks!!!   It comes down quickly, though, from what I have read.   So glad you are feeling better!  I so know how you feel about feeling normal for a change.  One day DH came home and found me cleaning the kitchen, singing to music.  He was ecstatic to see me more like my normal self.  I can't wait until that becomes an every day occurrence (the singing and feeling good...could do without the cleaning, LOL!)

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  • Fierro6
    Fierro6 Member Posts: 224
    edited June 2012

    Made it six hours at work, and realized I was no longer being the least bit productive and I really wanted to cry.  Yup, time to leave.  The problem is, my Neulasta shot is 6 miles from work, and it's 30 more miles to home, and my shot was scheduled for 4:00.  I just went in and asked if they could please get me in early.  It had been 23 hours and 45 minutes since my infusion finished, so they did it.  Thank God.

    I have never been one to drink water.  I hate water.  I drink WAY too much diet Coke.  So, when I was told to drink a lot of water, I decided it was going to happen.  I'm drinking a gallon a day.  No joke.  I put 8 pennies in my left pocket, and every time I drink a pint bottle, I move one to my right pocket.  DH works inside, but with no a/c, so he started doing it, too.

    Yesterday, they told me to at least drink Gatorade when I'm not eating, and if I lose too much weight they'd have to do something else.  (Is that a threat?  LOL)  I lost 8 lbs in the first 2 week cycle, but I can stand to lose a LOT of weight.  I think that makes them think I'm doing it on purpose.  I'm not.  I just don't want food for 4 or 5 days after infusion. 

    Today I forced down a small yogurt parfait, since it was the only available thing that sounded the lease bit palatable, and it has been sitting on my gut like a rock for 2 hours.  I'm just going to carry on like I have been, and hope I don't lose too much.  I don't want to get in trouble with my MO, but I can't eat when I'm not hungry.

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  • mistym
    mistym Member Posts: 58
    edited June 2012

    Hi Everyone,

    I haven't posted since last week but have been following you all.  My thoughts are with those affected by the terrible fires and I hope you are safe.  I hope everyone suffering from bad and minumal SE's feels better soon and also welcome to anyone new.

    I am 10 days out from 2nd TX and am feeling better each day other than headaches now.  Very little appetie but I am making sure I drink lots of fluids and that I at least eat a little as I am continuing to lose weight.  However, nothing tastes good if I taste at all.  Yesterday was my last of 7 daily Neupogen injections and the bone pain so far is tolerable but with last treatment, the severe pain did not come until a few days after the last shot.  I really hope that it doesn't get bad enough that I have to take pain meds.  Oh it is only on my right side.

    My BS called yesterday with the results of my 2nd CT scan on my liver.  He said "the lesion hasn't changed much."  What does that mean? !!!! Anyway, I now have to go for an MRI of my liver and am waiting for the hospital to call me with the appointment date. 

    I have been getting blisters on my right thigh since last treatment.  I only have five of them.  The first two don't look like blisters any longer but almost look like blood blisters rather than clear.  The other three are clear right now.  They all are round and then they all have a red area around them.  They also all hurt but have never itched so I do not think they are bites of any kind.  I've put polysporin on them and it does nothing at all.  I have to wear long shorts to bed because when my other leg touches, it hurts.  I have tried to research to see if I could determine what they are or if they could be from chemo but have had no luck.  I called my family doctor to try to get in to see her but could not get an appointment until next Wednesday afternoon.  I would rather not go to a walk-in clinic or emerg but will if they get worse before then.  My instructions from my MO are to see my family doctor for any issues between treatments unless of course they are definitely chemo related.  Have any of you ever had blister issues on your legs?

    Hugs to all,

    Misty

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  • vballmom
    vballmom Member Posts: 426
    edited June 2012

    Misty - I had a blister that I believe sent me into the hospital for five days when I was neutropenic.  Do you have a fever?  Have you researched shingles?  I know chemo allows stuff like shingles and herpes-type viruses

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  • mistym
    mistym Member Posts: 58
    edited June 2012

    Hi vballmom;

    I don't have a fever and did research shingles.  But it looks like shingles come as a huge rash?  My blisters are not all together but are all on my right thigh only.  I have been getting the Neupogen so am not sure if I could be neutropenic.  Maybe I should call my MO and speak with her receptionist.

    Misty 

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