Chemo June 2010

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  • workmother
    workmother Member Posts: 78
    edited July 2010

    Morning everyone. Feeling better today. Cold is lightening up a bit. Hope so, tomorrow is my second AC treatment. I'm shifting into dread and panic mode.Have an appt to have my head buzzed on Thursday after my shot. Still feels surreal. I have a question...

    ICE CHIPS - has anyone sucked on them during treatment? I brought ice pops the first time and they melted in my little insulated bag. Are the chips to keep away the cold sores? Do they help for the tongue feeling like I burned it on hot soup feeling too? Any suggestions on how to have them not melt? Don't think they have a frig I can use.

    Tmarina - so glad your heart is fine. How low was your BP? When I had my 2 days of dizzy, light headedness and weakness we discovered my BP was 97/58. The BP can definitely be the culprit, maybe in addition to the blood counts.

    Latte - so sorry about the head sores. That must be so painful. I hope it clears up quickly! I had a wire marker for my lumpectomy. I didn't have any problems but it wasn't at the nipple. They should be able to do something for you for the pain!

    Hope everyone has a good day!  : )

    .

  • cheyenna
    cheyenna Member Posts: 379
    edited July 2010

    CEBsMOM, i had mine taken off!!! i know that we could watch me close for if the cancer was to return in my breasst, but for me, i never wanna go through another biopsy again, or finding that lump!! i could careless about the pain, it was the emotional and mental stress that i dont ever wanna face again!!!! but the Mastectomy was not painful, the drains were no fun but not painful, now really my only worry is that that cell is not floating around in my body, im hoping if it is, the porolonged chemo ive chosen will wipe it out!! and i still have a 9 outa 100 chance it will return... the do great reconstructive surgery now a days... whatever you decide will be right for you... good luck,

    latte, i hope your head heals soon, you poor thing. i sending you hugs and good thoughts!

    well day 5 out from having #2 AC still have a head full of hair. what r clumps? i can pull a few strainds? but no clumps yet? my sis ordered me some cute scarfs and hats..

  • cheyenna
    cheyenna Member Posts: 379
    edited July 2010
    BTW, Friday is my birthday and ill just bet that is when ill lose it all!!! i hear its 21 days? my B-Day Tongue out this is no fun!!!
  • TMarina
    TMarina Member Posts: 692
    edited July 2010

    Workmother-->Glad to hear you are starting to feel better!  Hope your blood counts are good! 

    My bp was something like 99/45.  I've never been that low before.  I'm waiting to hear from my onc. to see what he thinks is causing it.  Its probably just a se from chemo?  What did your onc say about it?   I'm hoping we won't have to change the chemo at all, yet I don't want to go through this the last 2 rounds either. Feel a bit better today, but have a bit of a fever. (It was 99.7 earlier, and usually I'm around 97.5 in the morning).

    My onc. nurses give me a cup of ice chips to chew on when they are giving me the Adriamycin.  I haven't had bad mouth sores, but the inside of my mouth starts to feel chewed up and rough about a week after chemo.  I haven't had the "burned tongue" feeling--so maybe it helps?

    Is there a cafe where you are? May you can get a cup of crushed ice?  Or fill a big insulated cup with ice chips--maybe some of them won't melt before chemo?

    ~T

  • TMarina
    TMarina Member Posts: 692
    edited July 2010

    Cheyenna--> on DD AC, the hair starts falling out around day 14.  I see you are on a 3 week cycle?  Maybe you'll get to hang onto yours longer!

    Birthdays and holidays are difficult.  But the good thing about birthdays, even while going through tx, is just HAVING ONE!Laughing  You look way too young to be going through this--here's to MANY, MANY more birthdays for you!!

    Latte-->thanks for sharing your experiences.  I've just had scalp tenderness, but I know many others are having acne issues.  Hope yours clears up soon!

    ~T

  • kaycee
    kaycee Member Posts: 39
    edited July 2010

    To Sherry:

     I think the mistake in charting your weight could be very significant, Sherry. I was told at my treatment center that my weight/height would be checked every single treatment, because the exact numbers are critical in compounding the correct dosage for treatment.

    If indeed the pharmacy compounded your treatment for a 271 lb woman while you weigh half that, you could have been overdosed at your first treatment, and that casts your extreme side effects in another light.  

    Please check into it further. 

    About me:

    My right boobage where I had the lumpectomy has turned red. I should NOT google, as it looks exactly like the pics of inflammatory breast cancer. I called my onc's office last week, and they told me to continue with anit-biotics since I had no fever, and I'm scheduled to go in later today. I'm guessing infection (a stitch that didn't dissolve, a pocket from the lumpectomy?) but it is strange that I have no fever. I'll be glad when I find out what the heck is going on. IBC couldn't just show up overnight, could it?

  • julia2
    julia2 Member Posts: 183
    edited July 2010

    Day 16 from my first treatment, my hair is falling out.  I am so not as ready for this as I thought.  Back to the hair stylist to get it cut even shorter.  Cried today for the first time since I got my oncotype score.

    Julia

  • TMarina
    TMarina Member Posts: 692
    edited July 2010

    Julia-->so sorry you are having a rough time with this.  I was so upset when I first found I had to have chemo--because I knew I'd lose my hair this time.  (chemo I had last year just caused thinning).   I've always been self-concious about my looks!  I think I'm ok with it now because its actually a little freeing for me to be able to look a little "different".  I have no choice, so I've been trying to have a little fun with it--colorful scarves, silly haircuts, etc.  Its sooo unlike me!  I wish I knew what to say to you--its just so dang hard to deal with sometimes!  Yes, it will grow back, but that's not always what we need to hear!  Just know that many of us share your pain, and are thinking good thoughts for you.

    I just heard from my onc's nurse and he wants me on an antibiotic.  Other than that, she didn't say much.  I will see him on Monday (for #3 ac)and discuss everything then.  I keep hoping the Neulasta back pain will kick in, which means its working at building up my wbc!  SOOOO annoyed that I'm missing out on the few goods days I usually have between tx! Yell

    Sigh,

    T

  • TMarina
    TMarina Member Posts: 692
    edited July 2010

    kaycee-->hope everything is ok!  Let us know!

  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited July 2010

    cebsmom-  if you are considering a mastectomy, I think they don't do RADS all the time.  Usually they do rads with lumpectomies.  Only you can make that decision, but be sure to talk to your Onc, as I think it might change or eliminate your RADS.

    tmarina-  I'm so glad you got checked out.  I know the last thing we want to do is see a doctor (when they are not scheduled).  We are all so sick and tired of being sick and tired.  It must be a relief to get the good news about your heart.  I hope your Onc calls SOON with a good game plan.

    It's over 100 degrees in NYC and my biggest prayer today is that we don't have a  black out.  NYC without AC in this heat would be scary.  I heard Toronto had a brownout yesterday when the Queen was visiting.  Her hotel went dark.  Wonder how she can find her hats!

  • Latte
    Latte Member Posts: 1,072
    edited July 2010

    thanks everyone for the thoughts about my head. at least the itching has stopped, but it will take a few weeks to clear up still.

    tmarina - your blood pressure is almost certainly causing the way you feel - it's extremely low (and is a known SE). mine went to 80/60 and i felt terrible. But in my case there was an easy solution, my gp stopped my bp medication and almost immediately i felt better. I hopeyou find a solution, because it will make the world of difference to you.

    cheyenna - you'll know a clump when you see it :-)  mine started falling out 5 days after 2nd tx, but i am dose dense.

    workmother, twinmomjackie, rs711 - about the wire marker - does this mean that you can't have an MRI? I don't understand how that can work, because i think i need another breast mri before surgery so they can see what the status is and decide how to proceed. do they take it out after the chemo ends, before surgery?any ideas?

  • Trusting
    Trusting Member Posts: 43
    edited July 2010

    Hi Mimi9186 and SKD,

     Thank you for your responses to my hair loss question. I am now on day 15 and starting to shed like a dog. I will wait till I thin a little more but I can see the inevitable is just around the corner. I will ask my husband to buzz my hair soon. He is bald and shaves his head. I bought some awesome hats for those of you who do not mind spending a bit try Lillie and Cohoe Hats. Their hats are funky and awesome. I think it is worth it. I may get one or two more today.

    Take care,

    Trusting

  • kittycat
    kittycat Member Posts: 2,144
    edited July 2010

    Cheyenna - Happy early Birthday!!!  :)

    Kaycee - I would definitely have them check out your redness.  It probably is an infection in the breast, but I wouldn't play around with anything (esp since I see you are triple negative like me).

    cebsmom - if you have a bilat mastectomy, then you probably wouldn't need rads.  I had a bmx last year with reconstruction (tissue expanders).  It wasn't the easiest surgery, but manageable.  I chose to do it because I'm BRCA1+.  There is a slight chance that cancer can come back with lumpectomy & rads or a mastectomy.  This happened to me, but I'm a very rare case.  If you go to the reconstruction threads, you will find a lot of good info on doing a bmx + recon. 

  • kittycat
    kittycat Member Posts: 2,144
    edited July 2010

    I am having a better day today.  Still some ickiness, but not as bad as the last few days.  Yay!   I do feel like an imposter going out in my wig.  LOL!

    Regarding Adriamycin and mouth sores - I take an insulated tumbler with ice chips with me to chemo.  I chew on the ice while they're giving me Adriamycin.  So far, no mouth sores - knock on wood!!! 

  • Sherry9316
    Sherry9316 Member Posts: 294
    edited July 2010

    Hair loss!  Oh my!  I am 3 weeks out from my first tx (A/C) and as of yesterday still had not lost any hair.  I had mine buzzed a couple of days after my first tx because I did not want to deal with clumps of hair everywhere.  Yesterday, when I had still not lost any hair, my husband said maybe I was one of the small percent who wouldn't lose my hair & I shouldn't have buzzed it so early!  I thought, just my luck, LOL.  Well today, it is coming out like crazy.  But just in spots.  So I have little bald spots sprinkled around on my head!  Husband ordered me two hats from headcoverings.com.  They will be here Thursday - just in time.

    TMarina or Cheyenna (sorry can't remember which one)- so sorry you are having so much problem with your BP.  Mine is about 80-90 over 54-60 normally and the lightheadness and dizziness goes with that so I feel for you.  I hope you can get that under control soon.  Why don't you lounge in a comfy chair and let friends/family wait on you til you get through the rough part.

    I have been feeling so GOOD the past 4-5 days.  I'm dreading tomorrow.  First FEC treatment.  I'm trying to remain hopeful that it will be better this time.

    Kaycee - I hadn't thought about the weight as it relates to dosage.  I will mention it when I go again.

    Mimi - you are very sweet to worry about me.  But I honestly hope the worst is over.  

     DesignerMom, TMarina, Latte, Cheyenna, Isla, and all the others not feeling well or feeling blue or both - I LOVE you guys and look forward to our little "chats."  Here's to having a better July for ALL of us (raising glass of orange juice for toast)!

  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited July 2010

    I just want to say that I think all of you are so fantastic, supportive, generous and brave.  If I have to be a member of this club, I'm glad to be a member with you guys.  As we are all going through these up and down days, I just came across this quote and thought it fitting:

    Seize the day.  Think of all the women on the Titanic who waved off the dessert cart. Erma Bombeck

  • NorthernGirl
    NorthernGirl Member Posts: 67
    edited July 2010

    Hi all...

    It is so helpful to hear about your experiences.So glad I found this site/thread.

     I bet my BP is low... would explain the waves of dizziness.

    Good luck Sherry9316 for your FEC tomorrow.

    DesignerMom:  my daughters and I are giggling about your Erma Bombeck quote. I think we'll go out for gelato tonight.

    I am Day 11 post my 2nd FEC and 1 week post surgery for Port installation and can honestly say I feel okay. Some dizziness and weakness, but otherwise fine.... Yay. Most of my hair is gone. It's caps and scarves all the time. 

    10 days till next chemo... yuk

  • cheyenna
    cheyenna Member Posts: 379
    edited July 2010

    thank you, i think it was a misprint, im on AC every 14 days x 4 then taxol once a week x 12.. im thinking the AC is dose dense but i dont know, im freaking over my hair now, please tell it gets better!!!!

    Designermom, you are wonderful!!!!!

    sherry im so glad your feeling better!!! lets keep it that way!!!Cool

    I pray we all have a good week!

  • mimi9186
    mimi9186 Member Posts: 127
    edited July 2010

    Well 5 days out of my second FEC and doing soooo much better than the first time.  I love the female onc I got this time and will try to keep her.

    Latte, I just want to come half way around the world and give you a big hug and a cooling head massage.

    Sherry, I can almost promise tomorrow will not be as bad as the first time, nothing cound beat that.  If you don't call your onc at first trouble, I will drive a thousand miles south and pick you up and take you in. 

    For all having chemo rounds this week, blessings to you all.

    Mimi

  • julia2
    julia2 Member Posts: 183
    edited July 2010

    So, does anyone else have a super sensitive scalp with the hair loss?  mine feels sunburned right down the middle from front to back.  I'm trying to decide if it is infact sunburned, or just another chemo SE.  It was sunny this weekend, but i mostly stayed out of it or wore a hat.

    Julia 

  • PearlGirl
    PearlGirl Member Posts: 549
    edited July 2010

    Seeking advice on head shaving. Am 14 days post first CT chemo and yesterday my hair started shedding all over the place. Today I bought a wig and a great baseball cap with longish hair at the back so I can just plop it on my head to go for a walk or the the grocery store.

    A friend has come to viist and she brought the clippers. We are planning to do the deed tomorrow evening after dinner. She's never used the clippers before and I've not been bald since birth, so it's a learning curve for both of us.

    Any suggestions on how to preceed?

  • julia2
    julia2 Member Posts: 183
    edited July 2010

    Bon,

    Do you have attachments for the clippers for different lengths?  Or are you really going for all over bald?  My onc didn't want me to go too short and risk any nicks or cuts, today we did a number 4 blade attachment first, then took it down further with a number 3.

    Julia

  • Isla
    Isla Member Posts: 82
    edited July 2010

    Hi Bon

     You'll need the following for your head shave: wine (can be red or white) approx 2 glasses, fondant chocolates (my personal preference is for strawberry creams but precise type isn't significant and may require some trial during process), one or two good friends who can be relied upon to laugh, cry and joke simultaneously, a camera to record the process (sounds odd but it's a 'once in a lifetime' thing and you never know one day you may want to illustrate your book) and soft beanie for afterwards (some people find putting a wig on immediately too rough)

    Oh .. and the love and support of all your message board friends on here xxxx 

  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited July 2010

    Sherry- We'll be right here thinking of you tomorrow.  PLEASE follow Kaycee's very good suggestion and confirm they have the correct weight for your dosage.  Call me paranoid (no, I worked in the medical field and saw WAY too many stupid mistakes), I check EVERYTHING, including what they are giving me for chemo. 

    Bon-  probably the most important thing when buzzing your hair with your friend is preparing the cocktails correctly.  I hope you drink, otherwise make a great virgin one and whoop it up anyway.  I buzz my DH hair all the time.  With the attachments, you just run the clipper along the head.   I hear you should not shave it completley bald because the little hair stubbs get stuck and can be irritating.  Someone said no shorter than the #2 attachment.  Latte tried using a lint roller to get the little loose hairs and it worked well.

  • toni30
    toni30 Member Posts: 252
    edited July 2010

    Isla: I feel the same way.  Maybe it's the AC effect.  I am going in for #3 on Thursday, and last week I had to make a major mental adjustment.  I had to decide to slow down, do less, and conserve my energy for the chemo.  I cut back slightly on my work schedule and am doing less socializing on weekends - even my second week, when I do generally feel better.  Instead, I'm working in my garden and I'm watching funny chick flick videos to try to keep my spiritis up, but I have decided that the next two months are going to be about focusing inward and conserving my energy. Hope this helps - YOU WILL BE FINE.

  • workmother
    workmother Member Posts: 78
    edited July 2010

    Thanks to all for the ice chips in the insulated mug idea! Why didn't I think of that? My DH is in the kitchen right now banging away on ice cubes to prepare me for tomorrow. Went for my 3rd acupuncture today. I've been going every week since I started chemo. Hope it keeps away the SEs!! Thinking I'm not going to sleep much tonight anticipating AC #2 tomorrow morning.

    I think its amazing that neither my onc. or the chemo nurses warned me about the low BP side effect, especially since I'm on meds. At least now I know to check it and adjust my meds if it drops!

    Im doing the hair buzz on Thursday after the Neulasta shot. The place where I'm getting my wig is doing it. Wonder if I can bring a bottle of wine with me? Are we allowed to drink on chemo? I never asked.

  • kittycat
    kittycat Member Posts: 2,144
    edited July 2010

    Workmother - I'll admit that I've had a couple glasses of wine, but it was at least a week after chemo. I honestly couldn't think of drinking right after chemo.  The chemo video I watched at the onco's office said that an occasional drink was okay.  :)  The wig place did my hair buzz, too.  I still have quite a bit of hair on my head.  If I pull at it, it does come out.  It's about a quarter inch long. 

    So, I really feel like I'm in the Witness Protection Program with this wig.  I was thinking I looked like myself and then caught a glimpse in the mirror at the beauty supply store.  Nope - it wasn't me!  LOL!  I got some clips and stuff to play with the wig. I haven't done anything with my sister's wig yet.  I am going to wash it tomorrow and let it dry (it's a human hair wig).  It's kind of yellow on me.  I'm used to being blonde, but not yellow.  My hair has dark roots and it's dark underneath (ok, so it WAS). 

  • Latte
    Latte Member Posts: 1,072
    edited July 2010

    workmother - i was also on bp meds and my onc never told me low bp was a possible side effect. even when i told her what had happened to me, she sounded surprised. i was quite upset that she hadn't told me. but there's a lot of info on the web about it.

    isla - shame i didn't get your buzz cut instructions before i did mine - would have been a lot more fun!

    kittycat - i definitely recommend a lint roller to get all the loose hairs out - it's fun, and quite satisfy to see them stuck to the sticky paper :-)

     julia2 - sore scalp is definitely part of the process for hair loss, but it will pass. don't know if you know, but the chemo also causes changes to melatonin (or something?), which means that you can get burnt straight away in  the sun - make sure you always cover up and wear high SPF sunscreen.

    cheyenna - every two weeks is dose dense. so maybe your hair is just hanging in there for a bit longer?

  • janny99
    janny99 Member Posts: 119
    edited July 2010

    Chemo # 5 for me today.  All was pretty good, although my blood counts are dropping a bit.  Still within normal range though.  I had ALL 3 of my sisters visiting this week, so it was quite the experience sharing my chemo day with them.  I lost my hair last week, and they couldn't have picked a better time to come out!  It was a wonderful surprise!!!  I was very tired this afternoon, and took a long nap, now I can't sleep.  They are all flying out tomorrow afternoon.  I have a feeling it's going to be a very weepy goodbye.

  • grneyd5600
    grneyd5600 Member Posts: 420
    edited July 2010

    Hi Ladies,

    I have been off the boards for several days and have so much to catch up on.  First, I made out ok for the first 3 days after my second AC treatment last week.  By Friday though I was so tired I could barely make it through the day.  We went camping for the long weekend and I could barely find the energy to go.  Anyway, I had buzzed the head in anticipation of the hair loss thing but still had a stubble (#2) going on.  Well when I took my hair off Friday I had the bald circle look going on!  I only shed a tear or two and then we went ahead and razored it the rest of the way. 

     Anyway, like several of you I had a terrible time with exhaustion all weekend!  I never ran a fever but definitely had hot flashes that raised the old body temperature.  Then I started with the sneezing and sinus congestion.  Still no fever though.   My blood counts were on the low side but still in acceptable range so Dr recommended as much rest as possible.  Can you sleep your life away???

    Well today is one week beyond treatment and I am feeling more normal.  I am just not sure how this is going to work when I go to the weekly treatment for Taxol.  What happens when you don't have a week to recover? 

    I refuse to give up so I just keep pushing forward.  Thanks to all of you for the great advice on how you are handling the SE's.  I am so grateful not to have the nausea too.  I send out hugs and well wishes to all of you.

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