April/May 2012 Chemo hang out

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  • lsharvey822
    lsharvey822 Member Posts: 257
    edited June 2012

    @Rgina - By day 13 mine was falling out significantly if I just ran my hand thru my hair.  By day 19 I was so semi bald and moth eaten looking that I said it's gotta look better bald and shaved it!

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

    Fierro:  I was in tears as well too!  I know what you mean......  It doesn't take me much to cry, but when I do, the tears are shed and I move on.  It can be something really small. Maybe once a week.  There is a lady who has shitzu's as therapy dogs and brings them in while we are doing chemo.  I wish my dogs (golden retrievers) didn't shed so much... They would be great therapy dogs.

    Indigo:  I have taken the wrong pills too after treatment.  There's so many pills initially.  It's easy to get confused.  My kitchen counter looks like a pharmacy...  Wishing you well with hopefully minimal to no S/E's this weekend.  I will be the same boat as you next weekend.  Can hardly wait.......  Just have to keep thinking there's an end in sight to this chemo.....

    Mary:  I am not sure on the drug whether it was via IV or not.  PS--I like your scarf and your pic.  I have to redo my pic (sans hair), but need someone to do it for me.  I still have a hard time with tying the scarves.  Have you mastered them yet.

    rgina:  I hear ya as far as tugging out the hair.  On day 15, mine started coming out in handfuls after washing my hair.  I was in a meeting with 15 other people and I kept tugging and handfuls would come out.  I went to the garbage can at least 10 times during the 4-hour meeting.  I am sure my co-workers (some whom I only see a few times a year) thought I was some crazy madwoman pulling my hair out! Foot in mouth 

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

    nofear - I did the Nystatin rinses 4 x a day, for 2 weeks...I think that kept it from worsening...but I think what got rid of it was my white cell count coming way up after multiple Neupogen injections.  It definitely was correlated with the white counts getting good and strong.   I'm hoping it doesn't come back when my counts start coming back down...but I won't be surprised if it does. Frown

    I also periodically switched out toothbrushes and boiled used ones before reusing them, just in case that was a factor.  I don't know how much that helped, but I did it just the same.   

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

    Dear ladies,

    I just wanted to offer some encouragement--you're getting through this however you have to! Way to go!  

    Also, if any of you are experiencing dry skin (I did: elbows, knees and cuticles) I used Burts Bees Lemon Cuticle Balm almost EVERYWHERE throughout my 4 DD AC and 12 taxol b/c chemo was so hard on my skin...and the stuff works wonders. I still use it and love it.

    L-lysine (supplement) really helps heal mouth sores, if you're getting any of those.

    I finished all official tx this past Tuesday (6.5 weeks of rads before that chemo started 11/1. finished 3/21), and remember that I was right where you are not too long ago.  My hair is growing in thick and wavy, about 2.5 inches so far.  I thought I'd never be done. But just keep putting one foot in front of the other and you WILL be done and soon you'll be offering others the encouragement you're reading from me. It will happen!

    cyber hugs,

    Claire in AZ

  • lsharvey822
    lsharvey822 Member Posts: 257
    edited June 2012

    @kjliberty - that picture of you in the meeting with the hair just made me lol!  sorry! I could just picture your coworkers.  I know some of mine were wondering about the fallout before I shaved it off!

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

    Isharvey:  LOL!

    Dancetrancer:  Do you have a dishwasher?  I put my toothbrush in when washing the load and put it on sanicycle.  (PS--I also put y kitchen sponges in their as well!) 

  • lsharvey822
    lsharvey822 Member Posts: 257
    edited June 2012

    @claire - someday I'd like to meet you and give you a huge hug for all of the inspiration you've given to all of us!  Thank you!

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    kjiliberty and dancetrancer- I bought a battery operated ultraviolet toothbrush sanitizer at TJMaxx/Marshall recently for about $15.00. It looks like an egg.  I'm able to sanitize my toothbrush right before i use my toothbrush.  It takes about 6 minutes to sanitize the toothbrush.
  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012

    Thanks guys for the tooth sanitizer ideas - I like them!  I was going to buy one of those UV things, then I couldn't figure out what brand was best...analysis paralysis ridiculousness!  LOL!!!  If I'm feeling well enough to shop next week I'll look again - thanks! 

    claire - thank you!!!  I actually lurked on the Taxol thread you were on and remember you from then...so it is especially meaningful for me to see you cheering from the other side!!!  Thank you for the inspiration!   

  • mary71145329
    mary71145329 Member Posts: 133
    edited June 2012

    Claire--thanks so much for the encouragement!!

    kjiberty--Thank you! I've been practicing like crazy with these scarves! I tried hats and wigs and bandanas and scarves seem to be my thing. They feel very secure and seem to give good coverage. I bought a bunch at Walmart and ACMoore(our local craft store) for no more than $6 each! I've watched a bunch of videos on tying them on YouTube and it works pretty easily!

  • sandik
    sandik Member Posts: 482
    edited June 2012

    Anyone have issues with smells? The last two or three days I get a wiff of something and it reminds me of that mediciny taste that you get when they access my port. Every time I smell it, I feel like I want to puke, which is weird, because I have not had any nausea and I have not been sick. But, it happens over and over all day. 

    On the way to the rehearsal today, I guess I had been cranky all day. My biz partner asked me what was wrong. So, we started talking, and my hubby is giving my niece away tomorrow. Long story short, we raised her for the first half of her life, so she asked him to give her away. I don't know how to say this without being a jerk. I think Im mad that I will be here to see this, but may not be around when it's my own daughter walking down the isle. I know that there are no guarantees for any of us here. Or anyone for that matter. A couple weeks ago, I teared up at a wedding because the mom was dancing with her son. I started thinking about the fact that I may not ever dance with my son at his wedding. I really never thought that I would be so emotional over these weddings. I have a whole summer full of them, so I can't just avoid them. I have a feeling that tomorrow I will be outright bawling. Ugh! I hate this damn disease! 

    I think like Stacie, that I have never said I will beat cancer. I don't make promises that I can't keep. There's nothing to do except fight. So, I do that. Like all of us here. I guess Im feeling down tonight. I am so grateful to have found you all. So glad I can say anything, even the dark stuff, and know that you will understand what I'm saying. 

  • sherryh16
    sherryh16 Member Posts: 120
    edited August 2012
  • kjiberty
    kjiberty Member Posts: 1,385
    edited June 2012

    Sherry:  I would check with your MO.

    Sandi:  ((hugs)) out to you.  I understand your tears.  I just hope I won't suffer an emotional breakdown (and loud one too!) during my son's wedding in September.  It won't be pretty.  I tend to get hysterical sometimes when I get emotional, like seeing them off to college, them coming home, etc.  Someone might have to put a muzzle on me!  How old are your children?  

    Melrose:  I am off to TJ today.  I haven't been there in a while and need to get my "fix" anyway, so now I have an excuse. I may look at WM since I will be looking at scarves/bandanas there too.  

    I "think" I have energy today so I am going to head out in a while before I crash to get some pre-chemo stuff (i.e. ingredients for the magic miracle soup, cottage cheese, more biotin, etc.).

    Claire:  Thanks for your words of encouragement.... I am taking the l-lysine daily.  My I asked my MO about it, and she looked at me quizzically and said, "I guess you can take it if you want..".  What kind of answer is that?  

    Again, thank God for these boards and the support I receive from ALL of you ladies.  I can't tell you how much it means to me.   

  • chapter4
    chapter4 Member Posts: 155
    edited June 2012

    Sandik - yes on the smell sensitivity. A woman in my office came in last week with new perfume....it was overwhelming...brought back the metal taste and Made me sick to my stomach.

    I finally sent an email to my co workers aplologizing for keeping my door closed that I was sensitive to smells including printer ink, perfume and some foods....the woman immediately came in and apologized for wearing perfume and said she would not wear any on the days I'm in the office...she thanked me for letting them know....people have no idea and I think they want to help us but don't understand what we're going through.



    I felt like such a burden to everyone...but in the end they were all so accommodating.

  • Pkate
    Pkate Member Posts: 37
    edited June 2012

    Pkate again.  I am on Day 3 of first Taxol and thought I report in since I feel so much better than after A/C.  Last night I had sore arms, neck, shoulders and boobs and this am, the legs are sore too.  Its not an ache though so maybe taking the Naproxen they gave me twice a day is preventing the aches. It feels more like a bruise all over but it doesn't keep me from moving around.  Still have no taste buds which always gets worse day after treatment (now both A/C and Taxol) but no stomach issues at all. So all in all, I am grateful for the new less traumatic SEs.  Would love to know from anyone if with Taxol they still had the crash?  I'm thinking yes because the counts go down and that probably is the biggest contributor.  I didn't have to take steroids after Taxol although they did give it IV during the treatment and I know that causes us to crash too.  Hate that feeling.

    I may actually make my son's 8th grade graduation on Monday which is such a blessing after all of this.  I live in Maryland and they kept him at school until the tornado warning passed yesterday.  His last day of middle school tests will certainly hold a lot of memories!  We are all okay despite living around so many trees. 

  • Krazycatlady37
    Krazycatlady37 Member Posts: 40
    edited June 2012

    Sherry--I had two cold sores pop up on my mouth after my first infusion. I get outbreaks from time to time but NEVER 2at once. So I assume genital would be the same.

    On a separate note, my white count is up from practically nothing to 12,000!!
    I am almost definitely getting released today. The Look Good class is Monday and I was so afraid I would miss it! Woo hoo!

  • babysammy
    babysammy Member Posts: 74
    edited June 2012

    Sandi.  Glad you have somewhere to turn when needed.  Its hard to think such dark thoughts.  Hope you enjoy your neices wedding.  Hoping people will be understanding when your breakdowns occur, we all understand, I am crying just reading your post.

    The taste in the mouth when port is flushed is horrible, reminds me of nail polish.  When I open a medicine bottle I get that taste.

    Pkate glad to hear you will make your son's grade 8 grad.  He will be thrilled you are there.

  • Fierro6
    Fierro6 Member Posts: 224
    edited June 2012

    Good morning to all!  I had a very emotional night (which you all helped me through, as usual,) and when I woke up today, my back was a little sore (I slept in the recliner for six weeks and my body is getting used to my bed again...no biggie) and I started to tear up because of a little lower back pain.  That's when I decided that I was done with that crap. 

    "Listen, you!  You got to sit around, mope, and cry all evening yesterday.  Today is a beautiful day, you have 10 days until you start treatment and REALLY have something to cry about, so get out there, take a friend to lunch, take DD2 to find a new swim suit...do SOMETHING fun and normal and quit your sniveling."  That's the pep talk I gave myself as I poured some coffee, and I plan to do it.  

    I just mainly wanted to pop in here and thank everyone again for the support, ideas, shoulders, recipes (LOL) and everything else I've already gained from this site.  I was at a real low point last night, and several of you in the middle of treatment, with REAL reasons to be a mess, took time to comfort me.

    Thank you. 

  • mary71145329
    mary71145329 Member Posts: 133
    edited June 2012

    Sandik---{{hugs}}

    Sherry---I would think low white count could cause just about any kind of infection. Check with your MO.

    Fierro--Glad to hear you've adjusted your attitude! Have a great day :0)

    Krazycatlady--Hoorah for higher white counts! Hope you get to go home!

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

    Sherry- The answer to your question is YES.  You need to ask your onco to give you a prescription of Valtrex to help with that situation. The supplement L-Lysine can also be taken to help but you have to clear that with your onco first.  Carmex helps with cold sores in general so you might try that.

  • rn4babies
    rn4babies Member Posts: 409
    edited June 2012

    Mary71....It looks we are on the same schedule with the same treatment. I started my first T/C on May 15. Round two is on Monday. It will be interesting to see how we do with the SE's this time around.

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

    Sandik, hubby had me smell a spice rub the other day (we were grilling) to see if I liked it.  It grossed me out immediately, and I too, have not had major issues with nausea.  I kept thinking I was smelling it all around the house.  I have since learned...stay away from strong smelling stuff!  I also developed an aversion, to all things, of the taste of Zofran!  I took it so much to help keep my heartburn down (it helps with that, too - both related to vagus nerve control) that I don't want to take it any more.  When I do have to take it, instead of putting it under my tongue, I quickly swallow it as fast as I can.  I just associate it with feeling my illest and don't want to go there!

    Hugs on the weddings and feelings and all that...OMG, I would be a basket case...I don't have children, but, if I try to put myself in that situation, I get weepy just thinking about it!  I too so appreciate a place where we can share our darkest feelings, and it scares no one away.

    kjiberty, I would interpet that answer from your doc about the lysine as "I have no clue about supplements."  LOL!  

    krazycatlady - FANTASTIC news!  Yay!!!!  Hope you get to fly free today!!!  

    Fierro - great self pep talk!!!  I do that to myself A LOT.  I also journal at times.  I just keep a private "breast cancer journal" in a word document where I write the worst of the worst.  I also write some self pep talks in there, too, and refer back to them as needed.  It helps me immensely.  Now go out there and enjoy that beautiful day.  I plan to join you in that - gonna get out a bit for the first time today in 10 days (besides the doc's office).  Woo-hoo!!!

  • mary71145329
    mary71145329 Member Posts: 133
    edited June 2012

    Rn4babies--My first was 5/14 but now will be Tuesdays. My SE's included bloody noses, shooting leg pains, aching hips and knees, funky dry mouth, constipation and a horrible steroid-induced "acne" rash. All were manageable except the rash. I remember you having bone pain....anything else?

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012
    rn4babies - I just looked at your signature...geesh, you've been at this as long as me.  You must have been so floored by the 2nd diagnosis.  I know I was when I was "re-diagnosed".   Hang tough girl.  BTW, I noticed you started Tamox in Feb.  Are you still on it during chemo?  I was told not to start tamox until I was done with chemo, so just curious what your onc told you.  
  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    Mary71 and Rn4babies- We are all on the same regimen and up for the big girl chair next week!  I'm in the gold lounger on Tuesday, hopefully if my numbers recovered from last weekend's fever.  I'm just one round ahead of you though.  I'm scheduled for 6 rounds in total so after Tuesday, I will be halfway through my journey through chemoland!!!   I'll starting getting the Neulasta shot on Wednesday, the day after chemo to help keep my WBC from getting too low again.  I did have bone pain in one of my heels and knees; and took some x-strength Tylenol which helped manage the pain.  I got a sore on my tougue but that went away fairly rapidly and it didn't stop this gal from eating!!  No "C" train or "D" train or dry mouth for me.  You might try using Biotene mouth spray, gum. tooth paste, mouth rinse to help with that dry mouth-- you can get it at Walgreens and CVS.  I'll be thinking about you when I'm in the big girl chair and hoping for minimal side effects for us!!!!
  • fairweather9
    fairweather9 Member Posts: 76
    edited June 2012

    Hi Ladies,

    I have not been keeping up with this thread mostly because I have felt so crappy the last few weeks.  I had my second AC on May 17th and I think I'm still not over it.  Has anyone else taken so long to get back to feeling "ok" I am really scared of my third one coming up next week.  If the effects get worse and worse I don't know what I'm going to do.  I feel weak all the time, I don't want to eat much at all.  I am trying my best to keep hydrated I just want to lay and do nothing.  How long does this take to get over?

  • Nance72
    Nance72 Member Posts: 38
    edited June 2012

    Sandik: Big hug for you!!



    Crazycatlady: Glad to hear your counts are up; hope you get to go home today!!



    Fierro: Have fun shopping and going out for lunch with you friend!!



    Dance trace: Good point about the Neulasta or Neupogen shot possibly being a cause for ones back pain.



    My pain from the shot I got one Wednesday is either mild this time around or hasn't kicked in yet. Time will tell. I got through work last night without an issue (health wise)- and the computers didn't crash like they were on Wednesday and Thursday when I was off. Many computer system issues at work this week. I just make sure I write down all figures so they can be input when the system is fixed. Just glad I was off Thursday, retail without computers is not fun.



    Extra prayers to anyone with SE's at the moment!!



  • Nance72
    Nance72 Member Posts: 38
    edited June 2012

    That should be Fierro: Have fun shopping and goin out to lunch with your friend!!

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    Fairweather9- Sorry you aren't recovering quicker from your chemo.  The effects of chemo are cumulative so recovery sometimes doesn't happen as quickly as the one before that.  With that being said, you really want to keep feeding your body healthy food to help it recover.   You may want to get some cancer cookbooks to help get you interested in food again.  I was given the cookbook at the cancer center I'm at, Eating Well Through Cancer by Holly Clegg and Gerald Miletello, MD which has easy recipes and recommendations during & after treatment.  It guides you through what to eat during chemo and how to deal with side effects.  It has taken all of the thinking about what to do foodwise away and just made my life easier.  The other book is The Cancer Fighting Kitchen by Rebecca Katz which has great pictures of food and recipes.  If you are unable to cook, get someone to help you.   also as crazy as it sounds, the more you get up and move, the better you will feel and perhaps less tired.  I really have to push myself on some days to get up and get moving so I, like you, feel like I have no energy.  I will get on my exercise bike for at least five minutes on those days and make myself go up and down the stairs to get things.   I will also tell you that I've looked on another website, Chemocare.com which Scott Hamilton, ice skater and cancer survivor started up.  If you read about your particular chemo drugs, you will learn that the actual recovery period for both of your drugs is 3 weeks.  If you are receiving your chemo round every 2 weeks under dense dose, this may be the reason why you don't feel great towards the end of the second week after you receive your chemo.  You want to talk to your onco to find out if there are things you can do to help minimize the fatigue.  Hope you feel better soon!!!!  You can get through this next one---- PUSH THROUGH!!!!!
  • JKBuffy
    JKBuffy Member Posts: 18
    edited June 2012

    Hi y'all--first time posting...I am scheduled to have 8 cycles of ACT...I had my first treatment of AC last week, and am getting my second treatment next Wednesday. I was pretty tired last weekend (saturday was the worst!), but was pleasantly surprised that I started feeling a lot better by Wednesday of this week (eating normally, good energy etc). I am feeling pretty anxious about the next treatment...worried that I will take longer to recover this time around.

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