Starting chemo January 2009?

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited January 2009

    Hi all: I'm so enjoying reading everyone's thoughts, worries, joys--helps keep me going!!

    I had a busy morning with accupuncture and lymphedema massage. Actually drove myself the day after tx--a bit scary but ok. My acc. dr. was surprised at how red I turn after tx--but I have that kind of skin, and was always a blusher. The 2nd lymphedema massage was great. It's such a gentle motion. I complained to her about my back--the scapula on my mx side sometimes sticks out (and my surgeon told me it's how I'm carrying my body), but she said there was fluid there and brushed it away. I'm hoping that the massage they taught me will end  my minor swelling.

    No nurse told me to eat ice during AC, but I read it somewhere here (which is a beauty of this site), and it really helps. Maybe knock on wood but no mouth sores after 3 ACs. Water doesn't taste as good this time, though. But I'm knocking it down--and a bit of apricot nectar really helps. Yes, and the chicken curry still sets ok. I seem to enjoy salty and a bit spicy--not so much sweet, but my dh made some killer choc. choclate chip cookies last night and I couldn't resist (but still didn't taste the same as before chemo--I think my new aversion to sweets has helped me knock off a few pounds).

    Well--gotta take the weight off my hemmorhoids (which my nurse practitioner is a bit worried about--scared me with complications).

    Hugs..P.S. Is there something special to do to view the pictures. They don't pop up for me.

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    so.......new problem.....i've finally "adjusted" to the loss of hair.  i'm loving my "hip hat with hair" and getting lots of compliments on it.

     now....my eyelashes are falling out.  my lower lashes are about 1/2 gone!  please, please don't let me lose my eyebrows....i'll be a beige blob without some definition on my face.

    ack!  anyone else?  i'm just days away from cycle 3 of T/C if anyone is wondering timing/treatment.

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  • bobcat
    bobcat Member Posts: 681
    edited January 2009

    Jess - that is the leadup to hair loss - the scalp hurts and is tender.  You'll be fine when it's done.  Stay in touch - we will help you.

    B

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  • kt57
    kt57 Member Posts: 425
    edited January 2009

    Jess:  There is relief when it's over.  and for me, it was harder than I thought it would be.  was a very emotional couple of days.  Just go with your emotions - be mad, be sad, cry.. you don;t have to be strong every minute.  and know too, you will have moments when you will laugh about this... and  it's all transient.

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited January 2009

    Wow--some of you ladies are sure holding onto your hair longer than I did (began pulling it out at 15 days, with some straggles left).

    Lisa--I've so worried about my brows and lashes. I'm not sure I can draw them on ok, but maybe I'll look into some glue on ones. I've always had good lashes, and it'll be so strange not to have anything to put mascara on--my one make up that I feel naked without. Maybe my eyeglasses will shield me from the truth.

    Jess--I've finally adjusted to the hair thing. Now that I have my wig I feel ready for anything, but prefer my denim bowler.

     To all ACers--I'm with Chris. Day 2 and NOT cumulative (knock on wood). I'm less dizzy and have a bit more energy. More red in the face, though.

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  • Renrel
    Renrel Member Posts: 497
    edited January 2009

    I thing the Look good Feel Better class is suppose to help with learning how to draw on eye brows and use eye liner to make up for missing eye lashes.  I too am worried about that part.  Seems much hard to pull off an attractive bald look without those defining features.  And just to warn you, I have read that the eye lashes are on some differnt grow back schedule than hair so they grown back and you lose them a few times before they are back for good.  I have not lost anything yet so that is based on posts on some other thread here but I think it is good to know stuff like that ahead of time and not be broadsided. 

    We went to the dinner party tonight and it was nice.  I hope I was not stupid.  I ate a yogert dip and a hot spinach dip and a small piece of Brie as we waited over an hour for dinner to be ready.  I was trying to stick to cooked things but I was hungry.  Then I served myself a nice serving of yummy looking salad before remembering I was not suppose to eat that, so I left it on my plate but it did touch my other food.  Ah well, it is done. Our hosts openned a very special bottle of wine which was mostly wasted on me.  I had to try a bit but my taste buds were not registering the flavors to really appreciate it.  

     DS behaved for the new sitter.  Yeah!  She is very young so charges much less than our last sitter who is DS preschool teacher and a mature woman.  Unfortunately she does not drive and lives 45 minutes away from us.  DH was always so happy when he had to drive her home and than drive back after a night out with me. Get the misses all tipsy and romanced and than leave her alone for an hour and half.  Less than 5 minutes to drop the 13 yr old is sitting much better with him, even if he does not expect to get lucky tonight. :)

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  • marlenet
    marlenet Member Posts: 345
    edited January 2009

    shockedat39

    Hi Thanks for the info.  I'm on Taxotere/cytoxan 4 rounds.  I plan to munch on ice this time. The mouth sores did hurt and i hope to not get them back!

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  • REKoz
    REKoz Member Posts: 590
    edited January 2009

    Hi everyone- So many new posts in 24 hours and this tiny menopausal chemo fogged brain cannot possibly address by name so I apologize in advance for what may just be a rambling of thoughts.

    First one is to my Paris bound sister..any room in that suitcase for me? You are truly fortunate to have that opportunity in front of you and man, if ever there was a time to grab it, it would be after getting through this! I loved what you said about "who knows what we'd do when actually faced with something." So true! I have spent my life saying to anyone who would listen that I would NEVER do chemo under any circumstances. Well, I should have learned after my divorce (I too am on great terms with my ex..however, he lives in China. Unlike Paris, there is no appeal to live there!) to never say never because here I am the day after my 3rd tx! Like you, I am awestruck by the attitude of those facing recur's but truly wonder if I could do it. Some people are stronger than others.

    Did I mention the sea bands for nausea? You can get them in any pharmacy and they have been a wonderful, drug free addition to making that se a little more tolerable for me.

    LOL at my sister with the 13 yr old babysitter. Get Mommy buzzed and romanced and then leave. I can imagine you passed out upon his return! Thanks for the smiles.

    I had thrush issues after being on IV Vanco for 12 days followed by oral abx for a month after post op infection. It does indeed stink and I am Bioteneing like crazy with a rx on hand should it pop up again during this chemo. My present issue is cold sores that aren't festering anymore but won't heal (I have an rx for that too!) and the appearance of zits I haven't seen in 35 years! The Oncol. said this can be a se from the Herceptin. WONDERFUL, the drug I have to take for a year! I have a topical rx for that. So, you can imagine that I am feeling like one hot middle aged sexpot right now! Kiss Hair is still here and I could get lucky but I think it will just take longer for me being that I am on a weekly cycle. I can't even imagine the emotional work it is going to take for me to walk out the door once that happens! DD (the July bride to be) and I are going wig shopping today. I'm also getting the prothesis since I won't be filled at all during chemo. Just thank God I have the most awesome SO who always makes me feel like a million bucks no matter how gross looking I become! Without him and the support of DD's and great friends.AND these boards..Well just Thank God!

    Here's to another day of living life no matter what it's throwing at us!

    Ellen

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  • ddlatt
    ddlatt Member Posts: 448
    edited January 2009

    shockeat 39 - i tried sucking on ice cubes during my adriamycin push, but it made me so cold that my veins wouldn't give a return, so i had to stop. but i've had two sessions and so far no mouth sores.

    side effects finally hit me for the first time yesterday (day 2 after tx2 of AC, one day after second neulasta). had a sore neck, sore back, chest, sore everything, and felt basically lousy all day. slept for hours during the day, was still exhausted at night. today i feel kind of "off," but nothing like yesterday. i absolute detest drinking water now. so sick of the daily minimum 64oz. i drink juice and gingerale too, but the sight of water makes me ill!! 

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  • Alo123
    Alo123 Member Posts: 308
    edited January 2009

    I spoke with my oncologist....remember how worried I was about the salads.....he told me my only diet restrictions were raw fish......

    so I immediatly ran out and had a huge salad for luch yesterday!!!!  I was soooo happy.....

    I don't want to encourage anyone to eat raw veggies if your doctor  said "no"..... but in me personal case he is fine with it.....I might add I am taking the neulasta shot day after treatment regardless.....

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  • Brenny
    Brenny Member Posts: 116
    edited January 2009

    I also have not stopped eating my salads - mostly I have made them and try to make sure everything was washed carefully  but my onc didn't put any diet restrictions on me either. And my coffee continues to taste good in the am and my glass of wine in the pm.  No Neulasta shots and WBC seems to be good (taken the morning of tx) -- heaven knows what it does in between......last tx on Wednesday.

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  • Renrel
    Renrel Member Posts: 497
    edited February 2009
    A quixk post whiile i have a computer. I was running a low fever this morning and was directed to go in and have a blood count.  Now I am admitted to the hospital for the next few days with Neutpenia.  My neutrophils are .13 and they want them to be at least .5.  But my monocytes are up which is a good sign that my bone marrow will be kicking in again soon. Those are like pre neturphils. But the won't let me go till they get back the blood cultures and those take 2 days or something to grow.  I have a nice private room with a wonderful view so I am just to to rest and wait. Hope everyone else is well. I feel ok other than a bit feverish and tired.  
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  • Renrel
    Renrel Member Posts: 497
    edited February 2009

    Oh, I am defintely not allow salads or fresh fruit till this passes.  I think it is probably a good idea to avoid them mid way through treatment, at least if you dont get neulasta or the other shots. 

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  • shockedat39
    shockedat39 Member Posts: 252
    edited February 2009

    Renrel,

    Sorry you had to go in the hospital!  I hope you're feeling better soon.

    Feel good everyone!

    Diane

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  • lisalisa
    lisalisa Member Posts: 824
    edited February 2009

    Renrel,

    how scary!!!  hope you are better and home soon!

    Lisa

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited February 2009

    Renel: Hope they take good care of you, and that you get home and feel better asap.

    kim

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  • Alo123
    Alo123 Member Posts: 308
    edited February 2009

    I just learned the cost of one Neulasta shot is 3000.00!  WOW!!! 

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  • lisalisa
    lisalisa Member Posts: 824
    edited February 2009

    I heard $4-5K for the neulasta shot!  Luckily, my copay is only $25. 

    I am so thankful to have insurance. 

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  • Alo123
    Alo123 Member Posts: 308
    edited February 2009

    Very thankful for good insurance!!!!!

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  • holtbolt
    holtbolt Member Posts: 625
    edited February 2009

    Alo - no kidding.... You know that Emend Three-pack (are you taking that?).  The nurse told me that is $600 for the three pills!  I paid $45 on my plan it but it worked so it was well worth it to me... but maybe if I had to pay $200 a pill....I don't know... oh who am I kidding... I WOULD pay $200 a pill.... (vomiting is not my thing).....yes! thank you insurance!

    Renrel - sorry for the hospital stay.. try to get some rest there...are you taking the Neulasta shot?

    Happy SuperBowl day everyone.... I must root for Arizona because Edgerrin James is on the team and he is an Indianapolis Colt at heart (we hated to lose him)... Go Cards!

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  • sjr585
    sjr585 Member Posts: 20
    edited February 2009

    I too am grateful for wonderful insurance.  I can't say what the Nueslasta shot costs, but I saw that my T/C chemo regime was over 9200, with the insurance company paying 5000 because of contracted rate and it only cost me 30 for my co-pay. Guess that is why I see the doctor each visit.  

    So far not really any reactions from my shot, I had my 2nd treatment on Wed and feel I am turning the corner and feeling better.  

    Today I started my antibiotics for 7 days?  I take 500 MG of levaquin for 7 days. Is any one else taking an antibiotic?

    Sally

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  • holtbolt
    holtbolt Member Posts: 625
    edited February 2009
    sjr585 - hmmm no antibiotic prescribed here... what SE's did you have with the first tx... ?
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  • ddlatt
    ddlatt Member Posts: 448
    edited February 2009

    i got the printout of costs for neulasta and chemo at my hospital - $9,000 for each neulasta shot, $13,000 for each chemo session (AC). kytril pills are $80 each. my bilateral mastectomy was $32,000. thank goodness for insurance - except that i have a $5,000 deductible because i never, ever got sick before my diagnosis. bummer.

    side effects went away yesterday and i felt great. feel great again today.

    renrel - hope you are home soon and feeling well

    srj585 - no antiobiotics prescribed for me

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  • Renrel
    Renrel Member Posts: 497
    edited February 2009

    Hi all.  I am still in the hosptial till at least Tuesday while they wait for the blood cultures to develope. I am feelng OK.  Stronger than yesterday. I am mostly dry. Try mouth and try eyes which makes me feel feverish even if I am not.  The room I have is nicer than many hotels.  The food here is good to excellent. The view is superb.  I have a flat screen tv to watch the superbowl on tonight and the fun bed that goes up and down, which is great for everything but sleeping. 

    My laptop is running out of juice so I m going to sign out.  Good love to you all. 

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  • shockedat39
    shockedat39 Member Posts: 252
    edited February 2009

    Ok, all kidding and complaining aside...

    Day 23 since first tx and my hair is not falling out.  Maybe it's thinning a little tiny bit but it's hard to tell with my GI Jane look.  And it appears to be growing back a little.  It's definitely thinning in another region but certainly not gone completely. This makes me nervous, to be perfectly honest.  If the tx is not killing my hair cells what else is it not doing?

    Is there anyone else out there who has not lost any or all of their hair this far past first tx?  This is so twisted...I never wanted to lose my hair (who does?) but now I'm worried because I haven't.

    Thanks for putting up with my craziness :)

    Diane

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  • kt57
    kt57 Member Posts: 425
    edited February 2009

    Good Sunday Morning All.. 

    Renrel:  you are right where you need to be --  rest and let those WBCs reproduce.   make sure every person who comes in your room washes their hands or uses alcohol hand gel.  

    Re: cost  it is amazing    I have been fighting the urge to feel guilty about using my health insurance, I know one or two pricey illnesses in a work group can really effect future premiums.  I guess the fact that I"ve worked at the same place for nearly thirty years, paying those premiums all that time and only using insurance for preventative care...maybe it evens itself out.   Hopefully after this "event of care' I'll go back to not using it much --- ever again.  

    Finally getting over neulasta se.  I thought I was going to skate though it at first.. did the claritin day before,day of and day after.... some mild  achiness in shoulders and neck.  Then sternun, rib cage and back pain started on Day 4 through Day 7 --  ibuprophen around the clock has helped and feel pretty good today.  Still tire easily and get a little short of breath.  The feeling that something is tight around my upper abdomen and ribcage is gone,  Kinda scary.... anybody else had that experience?    After the first round, without the neulasta, I was back to normal by now... this way different.  My onc is thinking about switching to neupogen daily for 4-5 days next round and covering the infection risk (if my WBCs don't respond as quickly) with levaquin. 

    Will watch the Super Bowl today. Not sure who I'll root for.  When the Packers aren't playing I generally root for the team with the cutest coach ---  not that I really care about looks so much as it amuzes the guys in my family. 

    Take Care...    

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  • shockedat39
    shockedat39 Member Posts: 252
    edited February 2009

    Hi Kathy,

    I haven't had any shortness of breath with Neulasta but it certainly makes me feel like ass. I'm going to try the Claritan the next time.  That has been the worst part for me. 

    I find it really interesting that you might feel guilty about using your health insurance.  I'm self-employed so I buy my own but was on company health insurance for many, many years.  It never would have occured to me to feel bad about using it!  It seems like companies would be protected from that happening based on one employee's usage but I can't pretend to know anything about it :)  Now I'm wondering how much my premium will go up next year, LOL.

    Enjoy the Super Bowl, whoever you root for!

    Diane

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  • holtbolt
    holtbolt Member Posts: 625
    edited February 2009

    kt57 - yeah tightness in chest, ribcage... I had it... (se of Neulasta or chemo who knows) ...I also had very bad indigestion so I attributed it to that... my heart raced a little and I was worried for a bit about that too.... in your mind you're thinking.... heart attack... but it all went away eventually.... maybe I won't be so freaked out if it happens again after the next treatment....

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  • kt57
    kt57 Member Posts: 425
    edited February 2009

    Holtbolt:  Thanks for the post --yeah -- that "mind" thing -- it's the worst.  heart attack crossed my mind... then the severe reactions - ruptured spleen and respiritory distress syndrone... can make ya crazy!  Fortunately I was able to talk myself out of it -- knew I would be way sicker if any of those were happening.  I noticed somewhere in these discussion groups that some people stayed on low dose steriods for these se. 

     I had heartburn/indigestion off and on through the first TC cycle  - now am on Prilosec OTC every day --now it's only minor and rare -- like when my ribcage feeling like it's squeezing everything up-- could be anxiety too.

    There are days I wish I could wake up and it would be May and chemo be a memory.  It was nice to turn the calendar to Feb today.

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  • kt57
    kt57 Member Posts: 425
    edited February 2009

    Holtbolt: How long after your neulasta shot did you start feeling the tightness in your chest?  How long did it last?    Did you take claritin?   I'm wondering if I stayed on the claritin, if it would have lessoned this se.....

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