January 2013 chemo group

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  • cancernoway
    cancernoway Member Posts: 90
    edited February 2013

    Hope49 - Love American Pickers.  We watch it all the time and then rewatch it (for some reason).  I like to find out what things are worth.  We used to collect old signs, but since that show started it is hard to find a good deal on them.

    Paula - I cracked up laughing.  Thank you!

    Went back to work today after treatment #2 (I went back after #1 also) and it felt great.  I've been taking Thursday, Friday, Monday and Tuesday off and back Wednesday.

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  • SherylB
    SherylB Member Posts: 450
    edited February 2013

    melibt,

    I too get the fever like you described but mine have stayed down 100.5 and 100.3. I notified the doctor but no need for meds my numbers have been good. I like to look at a fever as a healthy (at least it was) immune system doing the job it is designed for. Foreign poison put in our bodies and our bodies are revolting. My MO said to notify them everytime I hit 100.5, I can wait until the office is open if it stays in that lower range.

    Hugs, Sheryl

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  • SherylB
    SherylB Member Posts: 450
    edited February 2013

    NicMac,

    I had head bumps before cancer and the worst part is they would itch and I would pick at them and make them worse. I am trying not to pick because that just  makes them worse.

    On the Livestrong website they have recommendations for everything and here is one that I have done but only twice so far. Warm some olive oil and rub all over your head then take the baking soda and make a paste and rub that all over your head too (I just paste it with the olive oil in my hand) I leave it on for about 20 minutes then wash it off really well in the shower. It seemed to help with the itching and dried the bumps up some. Might want to try it, it sure didn't hurt anything.

    Glad you decided to post with us and share the laughs and the tears. 

    Sheryl

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  • SherylB
    SherylB Member Posts: 450
    edited February 2013

    Martha and smethot and all,

    I should be taking notes because once I read and scroll I can't remember who I wanted to respond to. I definitely have some chemo brain going on.

    Martha about emotional feelings in the afternoon. I wake up every morning feeling teary, I can turn on the TV or computer and then I am crying for no reason, good news, bad news, it doesn't matter. I feel like when I first wake up that I don't have my defenses in place yet and am just vulnerable.

    Shannon, I don't know why as healthcare workers we feel we have to be to honest and think we are being helpful. It took me many years into my >30 year career to just ask the patient what they may be thinking and let them control the conversation. I have learned to respond with as much honesty that I have learned from talking with them that they may want. It is not easy dealing with sick folks all the time, I spent 20 years in adult intensive care and got so burned out. If I didn't check on the patient after they left my unit I didn't know if they got better or died. I did learn over the years that they generally don't want to hear all the stuff I have to say and if they do they will ask. I hope I am better and can be more therapeutic with my patients as I have gotten older and walked in their shoes. Younger nurses really have been trained differently and come from a different place generationally. Ok let me get off one of my favorite subjects.

    I too am having treatment #3 tomorrow and gonna get them to run my infusions slower I can't go through the SEs I had last time. It can't hurt to run them slower.

    Hugs and love to all,

    Sheryl

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  • cancernoway
    cancernoway Member Posts: 90
    edited February 2013

    A friend of mine that hasn't seen me since before I shaved my head saw me today and burst into tears.  I asked her why she was crying.  She said because it hurt her heart to see me sick.  I reminded her that I wasn't sick.  I had cancer, but it had been removed and now I was doing preventative maintenance (sounds like a copier) to make sure it didn't come back.  I told her that hair was just that, hair and would she rather I have hair, or live a longer life.  She started cracking up at this point and gave me a huge hug.  She said, I hate that you are the one comforting me, when I should be comforting you.  I again reminded her, I don't need comforted.  There isn't anything wrong with me except the SE's of chemo and they are temporary.  She is an awesome cook and makes these delicious Chicken Cheese Enchiladas and just sent me a text message that when my taste buds come back she is making those for my DH and I.  I am so gonna let that happen because they are scrumptious!

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  • Bryona
    Bryona Member Posts: 214
    edited February 2013

    Ciao, bellas! Sorry I've been awol lately. I'm currently kickin' it at the hospital with a case of pancreatitis. I know, I know: You're all jealous. With any luck, they will spring me from this joint tomorrow. In the meantime, the worst part is that I'm STARVING! I can hardly wait for solid foods tomorrow.



    I hope you are all doing well. I'll check in when I get home; I hate posting from my tablet... :)

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  • Nicmac
    Nicmac Member Posts: 4
    edited February 2013

    Thank you, Skigirl and Sheryl for the great advice about my bumpy head! I did air it out today. I was cold at first but then got used to it, and it's still bumpy but not as itchy. Going to try the EVOO/baking soda paste tomorrow. Sounds like a project my kids could get into! 

    Mandy and all, Thanks for the warm welcome. My girls are 7 and 10. When I talked to my 10 year old about getting my head shaved, she told me she had been really worried for a few weeks after I said I would lose my hair. She thought that people lost their hair because they were really sick with cancer. When I told her no, actually the hair loss is a sign the medicine is doing its job, she was really relieved! I've tried to talk with each of them since then from time to time to make sure they aren't walking around with any unnecessary worries. 

    Shannon, I can so identify with your feelings of anger about the reminders of the "cumulative" side effects. Here's a story: Mine and my husband's co-workers were kind enough to take up a huge collection to pay for a cleaning service during my chemo (a very nice thing I will do for someone else one day). Anyway, the (very young) cleaning woman showed up after treatment #1 and tried to school me in how awful I was going to feel after chemo treatments. When I mentioned that I'd had no nausea or vomiting, she said "well, you;ve only had one treatment, HON, it gets alot worse!" Well, I didn't fire her, because, like I said, I'm getting this for free, and she did do a really good job. But I vowed at that moment to prove her wrong!! Been making up my comeback lines ever since. 

    Anxious to hear how it's going for all who are hitting the bar this week. I'm on Day 10after Tx 2 which so far has been my back to semi-normal day. Hope the sun's out tomorrow!

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  • Nicole503
    Nicole503 Member Posts: 295
    edited February 2013

     Bryona ~ Well, shoot!  Pancreatits doesn't sound fun despite your effervescence about the luxury accomodations.  Glad to hear you will be sprung soon and I hope there is a delicious meal with no restrictions in your near future.  Get better! 

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

    Sheryl, good luck tomorrow!  

    And as always, thanks for all the great advice/tips/insight you offer the rest of us!  

    --

    Mandy, One part of your post was a read aloud to my husband (the "I'm not sick" part!).  We both laughed heartily!  Glad to hear you're feeling better! 

    --

    hope49, I love your attitude regarding the treatments!

    --

    Everyone else - have a great day tomorrow regardless of where you are on this hamster wheel!  I have to go help clean up the dishes from dinner (I sound like I'm in grade school again - ha ha)

    ETA:  I've already said it on FB but BRYONA - GET BETTER!!

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  • kiwikid
    kiwikid Member Posts: 204
    edited February 2013

    Oliverhog and LeeA, thanks for worrying about me! My biggest problem at the moment is time! I'm back at work and struggling with the juggling act, and haven't had time to read the thread but hope everyone is well. I did see about the fix you song. They played it at my friends funeral, he was a teacher and died in a horrific outdoors accident along with 7 students in a canyon where the river rose very quickly. It always makes me cry.

    I hope you are all doing excellently.

    Xx kk

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  • martha323
    martha323 Member Posts: 79
    edited February 2013

    Good morning, my wise and courageous friends! Headed for lab work this morning as well as a follow-up with the surgeon.

    SherylB, Sending thoughts and prayers to you today. Sometimes I take notes as I scroll through the posts - I know I miss a lot, though.

    NicMac, welcome! Happy you decided to join the group - like you, I read these posts for awhile before I joined. I feel so fortunate to be able to tune in almost every day.

    Bryonna, great to hear from you, even from your tablet, and very happy to hear that you whacked the infection and you're headed for home and real food!

    Hugs and prayers for all wherever you are, Martha

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  • smethot
    smethot Member Posts: 161
    edited February 2013

    Day 15- chemo round 2 AC today and the hair is starting to let go its moorings.  Sigh...does everyone hold out hope that they will be the .2% that DOESN'T lose their hair on AC-T?  Alas, i am not.  Its not ACTIVELY falling out yet but its got no "yank at the roots" action either...if i tug...its comes along like an obedient dog...and now i seem fascinated to yank my hair out, strand by strand...warped much, Shan?  I got the Egghead Blues...well actually, no i do not.  I knew this was coming and i refuse to cry over HAIR.  Through all of this...its just HAIR...and damn it...it grows back...and when it grows back i will love it and hug it and call it George...and APPRECIATE it...when was the last time your average woman really stopped to appreciate her hair?  You know you love your hair when you will be happy to have a 1/2 inch (or a 1/4 inch) convict cut...and i will be LOVING my convict cut. 

    Ladies- I say we post weekly update shots of our hair growing back.  What do you think?  We're all going through chemical warfare together...the good the bad and the ugly...why don't we use the Jan 2013 Chemo thread to see us ALL THE WAY through?  Those of you who started chemo first first can start posting inspirational peach fuzz pics and give us latecomers something to aspire to...dare to dream of hair.  It would be really nice to see all of you regrow and morph back into your usual selves...and since i am a "latee" it will be nice to see and hear about your hair coming back while mine is still pending.  I watch the HAIR HAIR HAIR thread and those ladies have done somethng similiar- its great to see them emerging and actively flourishing on the other side of Mount Chemo.  Anybody up for a photoshoot??? 

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  • smethot
    smethot Member Posts: 161
    edited February 2013

    Bryona- welcome back and hope you get out soon...cheers to real food!!!

    Lee- Love the new avatar...is that THE HAT???

    And cancernoway...EXACTLY MY SENTIMENTS!!!  I AM NOT SICK...STOP CALLING ME SICK.  CHEMO SUCKS but it sucks smaller balls than stupid old bc did!!!  I am not an invalid and i'm gonna be PERFECTLY FINE...thanks for asking. 

    Thanks also to everyone for responding about my minimal SE's and my resolution to keep it that way...i appreciate your support.  And my motto has always been, the best revenge is a life well lived...show that damned chemo nurse who's in charge...ME!!!

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

    Shannon~I had an easier time losing my breast than my hair. It was long for the first time in many years and I loved being able to wear it in different styles. I never cried over my hair though. Once I realized I had no control, I made peace with the situation. The day before my first AC I got it cut short. The day before AC 2 my son buzzed it.



    I'm done with AC now and 75% of my buzz is still hanging on. When it starts to grow in I'm going to buzz it again to get rid of the dead chemo hair.



    You cracked me up with your " hugging George " comment.



    I hope you have minimal SEs with AC 2.



    Blessings

    Paula

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited February 2013

    smethot- I am unable to post photos here. My firefox wont let me. I do however post on facebook and can do it there.  Good luck today at the bar. Give them your usual amount of sarcasm and banter!! I shaved my head a again last night. The dead hair was ugly and I looked aweful. So back to the shiny bald babe for now...

    Nice to hear from you Kiwikid!!

    Wishing everyone minimal SEs and a great day!

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  • ywheels22
    ywheels22 Member Posts: 230
    edited February 2013

    I had round 2 of AC yesterday. I did experience a bit more nausea this time. At 7 p.m. it started so I took my meds and that seemed to do the trick. I am more tired today as well and I have the nuelasta shot this afternoon, which I dread because it really did me in last time. MY nurse said the tiredness can be cumilitive but everything else will vary patient to patient. For me it seems a bit worse this time. I hope #3 and 4 are no worse. Not sure how I would get through it if it gets worse everytime.

    I had my head shaved yesterday. The hair was shedding and I knew the clumps would soon follow so I thought it best to get it done wiith. Yeah I thought I might be that 2% too! Ha no luck!

    Good luck everyone!

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  • Zorina
    Zorina Member Posts: 103
    edited February 2013

    A/C #4  - Steroids were rough on my this time, and I spent most nights tossing/turning/sweating.   A little nausea, but I did manage to keep ahead of the Acid Reflux.  Hint:  Start taking the Prilosec a day before chemo.  Fatigue today, but nothing seems as bad this time, and I have to wonder if it is not due to the psychological boost of knowing that I am done with A/C,  but I will take whatever boost I can get!

    ywheels22 -  After today, you will be half-way through A/C, so celebrate!  I hope it goes smoothly and that SEs are limited. My taste buds did get better over time, but the overall effect builds so that even by #3,  my taste improved, but it was definitely not the same.  I had an extra rest between #3 and #4 and was surprised that a few extra days made things taste better.  So, yes they get better, but they won’t be back to what they were for a while.   Claritin has to build up in your system, so try taking it a couple of days before the Neulasta.

    Smethot –Good luck with treatment today.  My MO never want to allude to how I was doing while receiving A/C or spend much time discussing potential SEs.  Maybe she was trying to avoid the power of suggestion,  because if I mentioned a specific SE, she would discuss it thoroughly.   Even though my last A/C was delayed a few days, she actually told me that I did a lot better than she expected I would, and that she felt strongly that I would have a good chance at being able to handle the high dose Taxol. So, enjoy what you have…er, don’t have, and don’t let them bring you down. 

    Nicole – I am also worried about neuropathy, and have been reading about taking B6/B12 and Glutamine, but I forgot to ask MO about it last time.  I know I should start it soon so it is in my system ahead of time, and since they aren’t on her do not use list, I think I will go with the B vitamins at least.  I was taking B12 before chemo, and she wasn’t thrilled about me taking it,  but she also didn’t tell me to stop.  I just did.  Good luck with the Taxol this week.  I will be waiting to hear how you and Soteria do.

    Byrona  - Here’s to improved health and some solid food soon!

    Soteria – I like your idea of buzzing the fuzz that has been damaged by chemo.  I am going to wait a couple of weeks post A/C and maybe do that. At least, the newer stuff will be less damaged.  Of course, you’re talking to a woman who spent more time swearing at her hair during the day than actually styling it.  It was impossible to keep in any form or shape,  but maybe a bit of A/C will whip it into shape.  I am still reminded of the gal at my office that came back with curly hair….who knows,  maybe I will come back as a platinum blonde!!

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited February 2013

    I start weekly Taxol at the end of march. I am interested to hear from Nicole and Soteria about how it goes. I am trying to get some definitive answers about how much B6/B12 and L glutamine to take and when during taxol. Neuroathy would be bad. I need the use of my hands. When I was pregnant I lost the feeling in both hands for a month because I blew up like a balloon. Dangerous to cook clean, work. So I definitely want to do what I can to prevent that from happening.

    ywheels22- Half way there!!! Smile just because of that alone...

    Bryona- knock it off and get your A$$ home please...

    Nicmac- sounds like your kids might have fun rubbing the paste on your head. I can ear the giggles now!

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

    Shannon, yes, that is a 99 Cent Store cap (I only have 15 of them) with a halo wig that I bought yesterday.  It's much more comfortable than a regular wig; however, I'm now wondering what will happen with TSA going through airport security.  My husband says they make people take their hats off (I never noticed).  Re: thinking I might beat the hair thing - yep - I thought I might get lucky because I had a surgery that made my scalp quite numb several years ago; butttttt, no such luck.  OTOH, my south of the border hair seems to have been permanently afixed at puberty.  Strange.  I would say what my oncologist said about that but I don't want to shock anyone.  Re: crying about it - no, I don't think I cried but I was pretty agitated about it but then again, the scalp pain was intense and it was a few days post-chemo.  In short, the weekend from hell. 

    Re: photos - I posted a photo of my 99.9% bald head on FB yesterday. 

    --

    Zorina, congratulations on being finished with AC! 

    Re: neuropathy - lago just mentioned acetyl l carnitine on the carboplatin/taxotere/herceptin thread.

    --

    ywheels, good luck with the Neulasta shot today and with SEs in general.  I'm sorry you've had such a bad go of it in the past with that and hope today is better.  I assume you're taking Claritin.  Have you tried Tylenol?  I took it post-shot and it seemed to help, although I don't think I've gotten anywhere near the pain that some people have experienced with it. 

    --

    kiwikid, good to see you.  I hope all is well in your part of the world.  As always, I have so much admiration for those who are working throughout this experience. 

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

    Skigirl~I saw oncology N/P yesterday. Since I start weekly taxol on the 1st, she told me to start vitamin B6 now. 100mg 2X daily, and L-glutomine powder...10 grams 3 times daily on day of chemo only. She said, that's because mine is weekly. I'm not sure about dose dense. The vitamin B6 is the same regardless.



    Blessings

    Paula

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  • macyhen111
    macyhen111 Member Posts: 754
    edited February 2013

    Somthot, I like the idea of posting the pic's of before, during and after hair loss and regrowth. I am on Taxol weekly x 12. I had my 8th infusion yesterday and my hair just started shedding a little last week. I will be starting a new chemo because the Taxol has turned my toenails completely black and my fingernails are blue, I also have neuropathy in my feet and hands. My mo says the new drug will take my hair. I personally don't like my hair, but I have a very lumpy scalp. I wonder if any of you ladies that have lost your hair have this problem? And if you do how do you handle it. If my scalp wasn't so lumpy I would wear my bald head proudly.

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited February 2013

    Soteria-Thanks! We are on the same taxol ride. I already have B6/B12 in my multi so I am going to check that level. And I am going to add the L glutamine right after my last AC on the 8th. Are you going to ice your fingers? I am going to paint them too. I can hide my bald head under a wig at work, I cant hide ugly nails...

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

    Skigirl~oncology said to use a nail strengthener. I like Nutra-Nail. Also it's good to keep the nails clipped short and wear rubber gloves for housework especially dishes or anything with water.

    The dark polish is to protect from the sun. I love sunny days, but I don't spend much time in it, so I won't use the dark polish.



    I'm not icing. The breast Center where I go is a major one. Women from all over Ohio go there. They said, they only have one patient who ices her fingers, and one who uses cold caps.



    Blessings

    Paula

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

    I used to use Nutranail years ago and I think I still have a bottle around.  I always thought it was a good product.

    I just now cut my nails shorter.  I typically keep them short anyway but with the Sally Hansen hardener they seem to grow much longer/faster.  

    One thing I've noticed is that my cuticles are much more manageable than they've ever been.  I have a real cuticle problem but suddenly - I don't.  I've been meaning to google that.  Maybe cuticles are comprised of faster-growing cells - or perhaps it's the hardening polish.  The only time I've ever not had a cuticle problem is when I had acrylic nails well over a decade ago.  It sure would be nice if this ended up being a long-term benefit of having had chemotherapy.  Of course, if there are no nails - cuticles become a bit of a moot point.  

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

    Hmm, learn something new every day: 

    The cuticle is non-living tissue that is shed from the underside of the eponychium fold and tightly attaches to the nail plate to complete the matrix seal or gasket.  The cuticle sits against the newly forming nail plate.  This tissue binds so tightly that it actually gets pulled along with the growing nail plate.  The cuticle attaches to the underside of the eponychium and attaches to the nail plate.  Together, they form the seal to protect the matrix.

    http://www.nsinails.com/nail-labs/tricks-of-the-trade/cuticle-care.html#.USZnrVrzR2A

     

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

    Well I'm bellied up to the bar as I type.  I'm starting to get the hang of this so this time is much less stressful.  And...i'm officially 1/2 way done!  Yippee!

    I noticed a number of us are hitting the bar today.  Here's to minimal SE's over the weekend :)

    Bryona - I'm so sorry to hear you are in the hospital but it sounds like you are kicking that infection.  I hope you are home soon.  I'm sending healing vibes your way!

    Question on the b6/b12.  My onc didn't seem impressed with those supplements.  He said i could take them if i wanted but they don't do anything.  I have heard enough about them...i think i'm gonna just do it anyway.  how much are they recommending you take?

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  • smethot
    smethot Member Posts: 161
    edited February 2013

    OK...on this taxol string, i'm not scheduled to start until April 4th but i want to go the MO armed with knowledge and info- i swear you guys (and your medical teams) seem to be more in the know than my MO is...but I want the best care i can get...soooooo...what do i want to take with taxol (taxotere)?  Can you each tell me what you're doing/taking and where you and your medical team is, pls?  I want to present it to the MO and if he feels its not contraindicated, i'm doing it...the claritin thing worked out BEAUTIFULLY for me and the MO had never heard of it...now my onco nurses have it up on their board and they're telling all their Neulasta patients about it...and hopefully a bunch of people don't have to suffer through bone pain (because of YOU).  I have NO prob educating the docs (keeps 'em on their toes) but i need my bc survivorpedia (that's all of you) to tell me what i need to know.  Your input, knowledge and willingness to share is HUGELY appreciated. 

    And #2 went well...no issues...but i'm now known as "the claritin girl"...i really have to find a link to the studies that are being done so i can bring it in to them...  xoxox Shannon

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

    Claritin Girl :)

    Have you checked out this thread?  I've never clearly established if Taxol and Taxotere are the same animal because in some ways I am an ostrich when it comes to chemotherapy terms and Dr. Google.  In any case, this thread might be of help (it's one in my favorites group):

    http://community.breastcancer.org/forum/69/topic/578284?page=509#idx_15267

    --

    I'm smiling because Claritin Girl reminds me of Clairol which reminds me of my dad who used to take Correctol laxative pills and referred to them as his Lady Clairols!  LOL!  They were little pink pills and I think they were marketed as the "gentle" laxative.  

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

    Also, I was the one who brought up Claritin to my oncologist and his nurses in the infusion room. They were like "yeah, okay, you can take that" but being a firstborn anal-retentive OCD PITA I was saying "okay, so I've been taking Claritin and I'll continue that for a few days - is there anything else?" before they could even pull the syringe (ouch!) out of my arm. 

    My point: my cancer center didn't tell me about Claritin either and to my knowledge they don't suggest it.  

    Another reason to yell from the rooftops:  THANK GOODNESS FOR THIS BOARD!

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited February 2013

    Smethot- I just joined the Weekly Taxol Group thread to get an idea of what to do for the next round. Seems B6/B12 and L-glutamine are the big winners. I also saw an addition of Acetyl-L Carnitine. Now I am trying to get the dosage for each. I'm getting there.  I found that these boards give me way more info than the MO and nurses. I think they are afraid to give you too much info. Don't they know we all go home and dissect the Internet when we hear a whisper about something working for a SE? Glad today was a non-issue day for you! YAY!

    JulesDenver-B6/12  I would take them anyway. If it's working for a bunch of ladies here them I am all in. Sometimes the MO doesn't seem to impressed with any suggestion that's not theirs, so, go with your gut. Unless they say absolutely not!. I just have a list of things I am adding and bring it with me. I do what LeeA does. 'So, I've been doing a,b and c... is there anything else I can try?' Seems to get the point across that we are not just wondering through our treatments blindly.

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