Starting Chemo October 2012

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  • CelineFlower
    CelineFlower Member Posts: 875
    edited October 2012

    love the hair cut Poke!! you are so beautiful!

    Today is a big day for me... port surgery at 8am then second round of chemo at 9:30

    cant sleep ofcourse.. been up since 2am.

    Love reading this thread.. its great to be with all of you on this path.

    Feeling a bit down today.. need to go find some purple bubbles..

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited October 2012

    I think it would be fine to take your daughter along.  13 is plenty mature enough to deal with these issues and she will probably be a big help to you in picking out wigs, makeup, etc.  (My experience has been that a daughter will be more brutally honest about what looks good & what doesn't, than a close friend will be!)  I need to find out if there is one of those classes around here.  I've never worn makeup in my life and wouldn't know what to do with an eyebrow pencil, eyeliner, whatever.  LOL!

    36 hours post first chemo and still feel OK.  Neulasta shot was nothing, couldn't even feel it, and no SEs from that yet either.  Took the Claritin so hoping for the best!

    Virtual hugs to all who are having stuff done tomorrow (er, today, I guess...  insomia strikes...).  Hope all goes smoothly.

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  • ridergirl
    ridergirl Member Posts: 443
    edited October 2012

    Look Good Feel Better is awwsome! I went on tuesday and really enjoyed it. I do wear makeup already but the tips on dealing with the lost eyelashes/brows and how to recreate them were super, and youll get a whole box of really nice cosmetics.

    As far as taking your daughter I think it will be fun for both of you, just make sure she knows some ladies there may be bald and/or way sicker looking than you, just so it doesnt scare her. Just my thoughts,, hope you really enjoy it tho:-)

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  • BethBV
    BethBV Member Posts: 49
    edited October 2012

    Thanks for the encouragment about Look Good, Feel Better!  When my daughter gets anxious about the cancer stuff she gets clingy which is understandable.  This morning she said, "I'm going to miss you at school today!" and gave me a crushing hug (not hard to do six week post BMX).  Then she went and found a little craft she made me . . . a pink hedgehog (sparkly pink pipe cleaners glued to a pink pom pom).  She said, "I want you to take this to chemo with you." I thought that was a great idea . . . a chemo hedgehog!

    Sounds like insomnia due to the d-whatever is pretty common.  I slept for two hours last night (1 - 3 AM).  I just layed there awake until my husband got up at 5:30 . . . read my kindle (yay for the lighted cover), listened to my iPod, tossed and turned but did not sleep.  I certainly feel tired enough to sleep.  Maybe I'll sleep through chemo instead.

    Thanks for being here, ladies!  I'm learning a lot!

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  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited October 2012

    My LGFB class got postponed from Tuesday to Nov. 1 but I may not have made it anyway as felt rough Tuesday after chemo Monday. Beth, I think taking your daughter is a good idea. I heard from a friend yesterday who went with her s-i-l that she had to sit back of the big round table the group was around but that was just here and with a 13 year old I suspect she would be right with you.

    Bet it was the dex. My last dose was yesterday, day 3 and I feel pretty good this AM. Mind you I did take .5 mg of Ativan last night as two nights poor sleep was enough. But I can't emphasize  enough, to drink lots of water and continue it. 

    SmileMarian

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  • Poke
    Poke Member Posts: 225
    edited October 2012

    Thanks for the kind words everyone. I am a little woozy so I can't remember who said what :) dexamethasone can definitely cause headaches and palpitations. Teenagers should absolutely be allowed and welcomed at Look Good, Feel Better! My veins are huge so I'm gonna stick with allowing them to use them for quick blood draws until I'm more comfortable with my port.



    The IV dexamethasone did nothing for me as I slept all night like a baby :) It was very hard for me to stay hydrated last night because every time I would try to drink I would get abdominal cramps. Fetal position was my only relief for several hours, then I finally gave up and went to bed. My honey made some spaghetti which I gobbled up so that was good. Today I chased my zofran with biscuit and jelly.



    Hang in there ladies! xoxo

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  • Poke
    Poke Member Posts: 225
    edited October 2012

    BethBV good luck with the wig shopping. I got one online last night. I asked the mean wig lady for the model info. OMG she was so rude!!!! Anyways, I got it online with free shipping and it was $150 less than she was charging. I could not bear to give her my business. I hope you find a place with some compassion. I thought I would cry, but I didn't! Stay strong!

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  • Poke
    Poke Member Posts: 225
    edited October 2012

    Good luck Celine!!! I was asleep for my port placement I hope yours is going well right now and that you are comfortable! I just took my first shower, yesterday the worst part of treatment was when they pulled all that tape off me :) I can't see mine through my thin skin which was a huge relief this morning when I finally looked at it.



    I know you're feeling down, but try to smile :) we are all here for you :)

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  • alcb70
    alcb70 Member Posts: 166
    edited October 2012

    Poke- you're hair does look SUPER cute!

    My hair has finally started falling out. Normally I wouldn't be happy about this, but seeing as my doc told me it would come out "not a day before or after day #15....and it's now day #22!!! I got it whacked off at day 9! Grrr

    Ok, so those of you who need to laugh.....how many of you are self conscious at chemo? LOL They give me my nausea meds and benadryl and I have no choice but to knock out! I wake myself up snoring a little. hahahaha I hope it's only a little! Also, considering what this does to your stomach....I hope snoring in public is the WORST thing I do!!!! bahahaha How horribly embarrassed would I be! I guess we aren't responsible for what we do in our sleep. Well, at least this is what I keep telling my husband! (after 23 yrs-he's not buying it)

    I hope everyone is se free today! Not looking forward to my shot tomorrow & feeling like crap. We FINALLY moved into our new house and I was feverishly unpacking before I got knocked down. Still tons to do.

    Have a wonderful day ladies! I'll probably be back on tonight when I've slept off my benadryl all day and the steroids have me up!

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  • Poke
    Poke Member Posts: 225
    edited October 2012

    Andrea, 

    I can't imagine unpacking a house through all this. Between all the surgery and the filing of the paperwork and the bills and the constant worry about one thing or another or finally yesterday chemo - I'm lucky if I feel like putting the dishes away. You guys are awesome :)

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  • Fastforward14
    Fastforward14 Member Posts: 16
    edited October 2012

    Hi everyone! Hope you are all doing well and that SE's continue to be manageable.  I have completed another step to cross off this list - my re-excision surgery which went really well yesterday. Thank you for the well-wishes.  Not bothered at all by the newest surgery - it's that pesky little port that is still sore, but I am sure it will be my best friend when chemo will go through that and not have to access my veins.  I actually have grown accustomed to my little golf ball chest friend. I have a dumb question to ask since I am scheduled to start dose dense AC next week - I have read all the posts urging the drinking of large amounts of water - if you flush the chemo out with all the water, is the chemo doing what it should be doing in your body?  Does the water flush out the waste or chemo that your body has already processed?  Just trying to wrap my head around the theory.  I also want to do what is best to avoid unncessary SE's.   Also, if anyone has a suggestion about anti-nausea meds - I have been given Ondansetron (Zofran), Prochlorperazine (Compazine)  and Lorazepam (Ativan anti-anxiety with anti-nausea properties) - I have been instructed to take them on an "as needed" basis, but it seems as though if you wait until the nausea hits, it's too late - I was looking for a "preventative" way to take these.  Have a great day girls :)

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  • Poke
    Poke Member Posts: 225
    edited October 2012

    Glad your surgery went well. You will be thankful for your port - I watched yesterday as they poked everyone and I was in no pain :) Yours is a golf ball?! I took the bandage off mine this am and I can't even see it. 

    As far as the nausea meds go; I was told to take Zofran the morning after chemo, then again that afternoon or evening (at least 8 hours apart). Repeat this also the next day. This was regardless of if I feel sick or not (because who wants that!?) I felt a little twinge last night but opted for xanax instead which put me right to sleep. I woke up this morning, had my zofran sitting next to the bed (sometimes I feel sicker when I sit up, and that is just in general for me) took it, continued to lie flat for like 10 minutes, then got up. Feeling fine. I was a little overprecautious, I'm sure. But I am tolerating fluid much better than I was yesterday, have no more abdominal cramping and even enjoyed some chicken soup. 

    As far as diluting the chemo, (don't quote me on this) but I feel that water is not going to prevent the chemo from working on your cells, it will only help it flush away after the fact. The water shouldn't physiologicially do much more than increase your blood volume and that shouldn't be a factor when it comes to the meds doing their jobs. This is just in my opinion. 

    Love to all xoxo

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  • Caitgrace
    Caitgrace Member Posts: 48
    edited October 2012

    Waiting to go in for the first chemo treatment. Port installed - a bit sore but still lots of meds in my system. They sure do help with the anxiety though. I'll try to get a photo up later, all my gadgets don't allow the upload so I'll have to get on the laptop.



    Wanna show you all the Mohawk before we shave it next week.



    Remember ladies attitude is everything -- there's nothing we can't tackle if we approach it with a smile, our strength, a heart full of love and an optimistic attitude!



    Have a great Thursday and I hope all are pain free - emotionally well - and free of SEs

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  • 301724
    301724 Member Posts: 478
    edited October 2012

    Fastforward - the onc nurses explained the take-home nausea meds to me this way: Your body has two nausea trigger centers - one in your gut and one in your brain. The compazine is designed to work on your gut; the ativan is designed to work on your brain. They suggested taking the compazine prophylactically every 8 hours for 3 days. If no nausea, go ahead and just stop it. If you do have nausea, you can increase it to every 6 hours. If you have 'butterflies in your stomach', add the ativan.

    Hope that helps!

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  • Fastforward14
    Fastforward14 Member Posts: 16
    edited October 2012

    Thanks Poke and 301724! And love love love your Dr. Seuss quote :) Good luck Caitgrace!

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited October 2012

    Thanks 301724, that makes sense.  I was given Compazine and Ativan and just told to use them "if needed".  I'm at 48 hours out from chemo #1 now and no SEs yet, but I did take the Compazine at bedtime just as a precaution and thought it might help me sleep.  

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  • melissa119
    melissa119 Member Posts: 172
    edited October 2012

    Fastforward14



    Glad your surgery went well. As far as the anti nausea. I had dose dense AC also. I took the zofran the morning after and then every 8 hrs so 3 times a day for three days after treatment. My mo said to take it no matter how I felt to keep the nausea away! And it worked. I never even touched the compazine which was additional as needed. I was never nauseous and made it thru AC and today just had #9 taxol of 12. Taxol for me is even easier. Hope it goes well for you!

    Hope everyone is having minimal se's. Feel free to ask questions as I have been thru most of my chemo and will be done in 3 weeks! Remember to take Claritin and aleve before neulesta. I did and never had bone pain. Anyone on AC chew on ice chips while they are pushing it thru. It will help with mouth sores and you should get minimal. On taxol soak fingers in Epsom salt to help with the nails and use tea tree oil on them. It really helps. And to give words of encouragent. If your regime is AC and taxol your hair will most likely start growing back during taxol! Mine started growing back already around my 7th of 12 taxol!

    Thinking of everyone! It is doable!

    Melissa

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  • ridergirl
    ridergirl Member Posts: 443
    edited October 2012

    Melissa i've only had 1 AC so far next is next week.. S/e's were not too bad nausea was manageable with the meds didnt have to use the iv ones they prescribed for home care nurse to give. Mouth did get sore for a couple days, would having a popsicle/freezie do the same as the ice chips? I hate even drinking plain water so if that would work...

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  • melissa119
    melissa119 Member Posts: 172
    edited October 2012

    Ridergirl



    Yes an ice pop would work just keep a peice in your mouth while it is being pushed. And invest in biotene mouthwash and even toothpaste and gum. It really helps with the mouth sores. Water is really important especially with the AC. They say it flushes it out more quickly and also helps a lot with the nausea. If you can't do straight water maybe add lemon or do iced tea or flavored water or anything else u can do! A key is to stay hydrated.

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  • ridergirl
    ridergirl Member Posts: 443
    edited October 2012

    Thanks i think i will try that this time. I did make sure to be well hydrated with other liquids like you suggested. Apparently anything without caffeine in it counts.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2012

    Fastforward -  My nurses said to consider the anti-nausea meds like a religious experience for the first 3 days and take them no matter what.  I was given a steroid & E-mend by IV before treatment and then steroid, zofran, & ativan for at home.  The zofran was every 12 hours for 2 days post, steroid at breakfast & dinner for 3 days post and ativan every 6 hours for 2 days post. Then the zofran and ativan were as needed.  They said that the 3 hit different nausea centers, and while I felt nauseous, once in control after the first day, it stayed in control. I think I took one extra zofran, but pretty much their system worked. 

    I think the water just helps flush out what has already gone through the system.  I know that cytoxan can be hard on bladders. I already have a bladder autoimmune, so I was drinking water like a fish to avoid having that stay an extra second in my bladder. 

    I had a little scare with my fever getting too high yesterday, and the doctor had me come in and get by cbc done again.  My white blood cells had recovered, and I no longer fell in a neutropenic range. Now I know that by day 10, the neulasta kicks in well so I can just be extra cautious in avoiding large crowds or people or more germy situations on days 5 or 6-9.  Still don't know what the fever was from, but they gave me an antibiotic. Thankfully, the fever has broken now.  I'm hoping to enjoy the weekend before starting my next cycle on Tuesday.

    Hope everyone has an SE-free weekend!

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  • MrsCich
    MrsCich Member Posts: 409
    edited October 2012

    Hello ladies. Today is my second infusion of TC. Oh boy! 😔 First one was nothing and even the side effects weren't anything horrible. No nausea and my appetite most definitely didn't change. I lost taste for a week or so, no saliva for that week either. Horrible yeast infection and consolation those first few days which I'm hoping to fix before it can get too bad.



    As many of the ladies mentioned earlier...drink drink drink and take your anti nausea around the clock for the first few days. I had chemo on a Friday and stoppe taking Zofran on Sunday morning. Never needed it after. Hope that's how this one goes too!



    Oh, my underarm hair is non existent and my leg hair is following suit. Pubic hair is kept short and is coming out slowly. Head hair was shaved to the scalp on day 14, as I was having to clean the brush after every stroke. Now the stubble comes out when I lotion my head. You can see it on my hands. However, I've yet to be upset about the hair. Not tying scarves worth a crap is another story. Lol



    Much love to all and hoping you all have minimal SEs.



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  • CelineFlower
    CelineFlower Member Posts: 875
    edited October 2012

    first , i want to say how gratefull and blessed i am to have this place to come to. You all make this feel "almost" normal, thank you.

    I did my second round of chemo yesterday... and my hair is still growing back!! grrr ... pivot nurse said maybe im part of that .5 % that doesnt loose it... i almost hit her! jokingly ofcourse... but still...

    Port surgery yesterday before the chemo treatment went well.... though i must say, it created alot of anxiety....some bruising and pain today.. but barable. No pain at all when they hooked it up to the chemo... like snapping a snap.

    I am the founder of an alt media forum... and i have sharred much info i found here over there. This morning i started a thread call "My purple army" ... thought id post it here too...

    It used to feel like a "team" ...but now i see it as a war.



    There are so many people in this war , some dont even know it.


    Celine: The battle field, and what we are all trying to save.

    Richard (husband) : General of the army (Takes care of not just me.. but our home, our family and the rest of the army)

    Cathy (my sister): General (keeps me organized and gets me where i have to go!)

    Christina: General (my healer and food specialist)

    Pivot Nurse: Major 

    Nurses: Captain

    Social worker : Captain

    Dietician: Captain

    Technicians (blood, mri's etc): First Lieutenant (a nod to my fav tech, a man i dubbed "porcupine", he is the one who draws my blood.. a great man, good soul)

    Breast surgeon: Capt Special forces 

    Oncologist : Capt Germ warfare specialist

    Psychiatrist: CIA (takes care of my mind hehehe

    Onco Pharmacist: Drug enforcer (and wow... they are GREAT drugs)

    Nexus Family: Chief warrant officers (Reading your posts is always the highlight of my day.. thank you from deep in my heart)

    Breastcancer.org: Chief warrant officers ( the support i get at both forums is..outstanding. Being with other women who are going thru the same treatments at the same time i am.... has been invaluable)


    My children: Warrant officers ( They help me feel normal and remind me why life is so worth the figt )

    Pot dealer : Private (pot has been a god send with the SE's , side effects.)

    Purple: Mascot (its everywhere... and my purple happy button tattoo is getting a reputation at the treatment centre, they love it and use it!!)

    Flowers: R n R...(ahhh my flowers... i love them so... )

    Tristan(grandson): happy pill (he is a big part of my healing and he knows it..when we were shaving my head he kept telling grandma not to cry and saying i was beautiful.. )

    Shayna my dog: cuddle monster club mascot (she is doing much better! and i love when she sleeps next to me)

    What an army!!! We kick ASSS!!!

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  • MsTori
    MsTori Member Posts: 402
    edited October 2012

    Celine- that's awesome! I like your crew! I never thought of it in that way, but it's a good way to think of it.

    Mrscich- I pray your treatment today and the coming days are good to you. I love your avatar!

    Today, I'm feeling more myself. Yay! Since my treatment last Friday, and Nuelastra injection Saturday, I have had bone pain and 2 days in bed, DM taking care of me because of severe headache. Now I'm coming thought the other side.



    My friend who is an inpatient chemo nurse, gave me a bunch of phamplets. Go figure why my center didn't. Anyway, water day before, day of and 3 days after- a lot, 8-9 glasses a day. Remember to include electrolytes. It flushes all the dead cancer cells and chemo agents out of your kidneys. Thinking long term kidney health here.

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  • halfcan
    halfcan Member Posts: 253
    edited October 2012

    Morning ladies,  Maybe someone can answer a question for me...For the last few days my gums/teeth are really tender.  It is getting to the point that chewing is about impossible.  I don't have any mouth sores, just hurts to close my teeth together.  I have been feeling really good and thought I was done with SE's for this first cycle but this has me wondering.  This morning I noticed tenderness on the side underneath by my jawbone.  Thinking it might be a gland or something.  Checked my temp so ok there.  I am using a script from the onc for rinsing in case of mouth sores.   I see the onc on Tuesday and get checked for blood counts with chemo #2 on Wednesday.  So I am crossing my fingers this is just another SE that will clear up before then.  Does this sound familiar to anyone?  Thanks.

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  • 301724
    301724 Member Posts: 478
    edited October 2012

    MsTori - did you try Clairitin for the bone pain? If you didn't, you might want to try it next time. Start the day of the neulasta injection. Take one a day for seven days. There's a clinical trial going on testing this but many have already had good results from it. Me included.

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  • BethBV
    BethBV Member Posts: 49
    edited October 2012

    Good morning, Ladies!  First Round of TC is down the pipe and getting to work!  I went in to chemo prepared for a long, boring day but I had such a good time!  My husband and I talked all afternoon with two dear ladies both with Stage IV breast cancer that has metastesized to their bones.  Yet they were so upbeat and laughing and helpful.  One of the gals was having her 5th round of ACT (of six) and had just recieved results from her PET scan.  ALL CLEAR!  I'd never even met her but we were ALL so happy for her!

    Short visit with the MO before chemo.  He just laughed because I was flying so high on 2 hours of sleep and all the steroids.  I asked if I could drop back on them next time but he suggested taking the second dose earlier in the day and then taking a snake oil pill (Lorazepam) at bedtime the night before chemo and again the night of chemo.  He also prescribed some sort of sleeping pill that I could use the night before chemo if I don't need the nausea meds as well.  Next week I'll have the needle biopsy of one of the nodes on my thyroid.  They suspect it's a non-toxic goiter and nothing to stress over.

    My treatment seemed to go smoothly.  Drew blood from the port (no issues accessing it although I'd gotten in a rush and forgot the emla cream) and, of course, the numbers were fine.  When they push that saline flush it tastes terrible - I would expect a salt-water taste but it definitely isn't!  Tastes very chemically to me.  Anyway, first they pushed more steroids through.  That was fine.  Then they hooked up the 60-minute drip of Taxotere which they said might cause problems so they watched me but it went fine as well.  Third was the huge bag of Cytoxan that they pushed in 45 minutes.

    About half-way through the cytoxan I asked my new friends if the cytoxan gave them a sinus-type headache and burning eyes but they denied that.  Said I might ring my jingle bell to notify the nurse.  It didn't seem that bad, though, so I waited.  When the nurse came by later I had a definite sinus headache, clogged sinuses and my eyes were burning and tearing.  The nurse said it was the cytoxan and noted it on my chart.  She said some poeple react to the cytoxan in that way but that it usually goes better if they push it slower.  Next time they'll run it over 90 minutes instead of 45 to see how it goes.

    I took the Lorazepam last night and slept amazing!  The doctor said I probably wouldn't sleep much until Saturday night after todays high dose of steroids so I was really happy to sleep last night.  I do need to drink more today, though, to get that cytoxan out of my bladder - the nurse suggested I should empty every 1 1/2 to 2 hours all day long today and overnight last night (since I didn't wake up in the night more than once I don't think I met her goal).

    Today I've got a dry throat, burny eyes and my fingers are still jittery on the keyboard.  Also a little wobbly walking around like my balance is off.  I'm guessing this could all be fluids related so I'm off to get some more to drink.  No other nasty side effects so far which is terrific!  The nurses and my new chemo-buddies all suggested that their worst day seems to be Sunday or Monday . . . I was planning to head back to work on Tuesday but they suggest I not get too excited about it.  Although they both said side effects seemed to be more intense with each round of chemo.

    Good luck to all you great gals!  Hope you have a super day!

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  • MsTori
    MsTori Member Posts: 402
    edited October 2012

    301724- I didn't take the the Claritan. I have been on Zyrtec since 2000 for allergies, so I just continued on that. Yeah, I'm thinking something specific in that Claritan and not just a generalized " antihistamine" is what does it. May have to switch it up for a week every 3 wks.



    Halfcan- yes, mouth, and sore throat. Biotine spray, and mouth wash. It seemed to soothe me. And yes, right after my humongous worst ever headache in my life.....my teeth and jaw hurt. But it was better than the headache, so I tolerated. Now all gone. I'm day 7 post chemo number 1. I know there's a mixture out there for baking soda and water. Will try and locate. Also, chew ice chips 15 min prior, during and 15 post taxotere. Cuts down on mouth sores and soreness.



    Beth- Ativan has been my friend for about 3 of these 7 nights. Got me through a rough spell day 2. Praying no more SE for you. :-)



    Today, yay! Up in chair. Post chemo day 7! More steady on my feet, and just dealing with a lil D. Walking around, eating more. Strength returning. Praise God! The ladies on the other board assure me that each treatment can get a little better. I like that.



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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2012

    BethBV- I got that same sinus burning with cytoxan so they attached another bag of just saline and had that going in to help dilute it.  You might want to ask about that as well.  Hope you stay fairly SE free!

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  • CelineFlower
    CelineFlower Member Posts: 875
    edited October 2012

    I have heard.. with AC... to suck on ice chips during the treatment .. this will help prevent mouth sores

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