Starting Chemo October 2009

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  • one-L
    one-L Member Posts: 1,110
    edited October 2009

    Mary, Onty, Meredith, Michele, Snuziq, Reneejean thanks for being there in spirit with me today.  All went well and I had no problems at all.  Am still  feeling good, had a good dinner and am now trying to drink, drink, drink.

    My chemo bag was full and I didn't need it all, but if I had needed it, I would have been happy.

    The peanut butter sandwich worked for me as they were cleaning the port, so I will not go without my pb sandwich. 

    I will let you all know how it goes tomorrow.

    Juannelle

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  • joanneasiata
    joanneasiata Member Posts: 719
    edited October 2009

    hi all TX YESTERDAY and feeling so darn tired with a headache lingering and not much energy

    mouth sores starting also a bit sooner that i thought ive been rinsing all the time bi carb/water mix it feels like ive eaten somethink really hot and its blistered the top of my mouth

    my mind is feeling really fogy doing stupid things like putting rubish in the fridge  ive got all my good foods bought a juicer got the popsikles in the freezer lots of smoked salmon cottage cheese  home made soups  heaps of spinich yes i do like that  and of course 3 big bags of twisties 

     i think i will just sleep away these next few days the the hair thing will be next on the plan ive bought 3 great wigs and heaps of scarves

     hope everyone is doing great enjoying their weekends

    thank god for all the anti nausea tablets i would hate to go through this with out them imagine!!!!!!!!   

    my love Joanne

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  • newtonville
    newtonville Member Posts: 43
    edited October 2009

    hi Ladies,

    i survived #3!!!!!  i can't wait to the last one. one more to go.   MaryNY, you can update me and add another smiley face.  as usual im very fatigued and stayed home all day in PJs and ate and tried drinking water.i dislike water and it is so hard forme to drink water.so mom made me some lemonade from fresh lemons, it helped a bit.

     tomorrow is last day itake EMEND, so i havestill constipation seideeffect for another few days.    also withstereoids, another 2 days to go,so means no sleep for me.  after that hopefully i will feel better.

    totally bald now..  and i always wearcaps,hats,outside. usually turban i find so comfy ,terry cloth, but when i go out, always hair pieces with hat or my new wigis good. i need to look good for myself andit feelsbetter forme,i feel more confident.

    hope all you ladies feel good, and take one day at a time. we are doing this, and hanging in there, bald or whatever,but our hair will grow.

     warm hugs to everytone.

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  • one-L
    one-L Member Posts: 1,110
    edited October 2009

    Congrats Newtonville.  Hang in there we are with you.

    Hugs

    Juannelle

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  • sammygrey44
    sammygrey44 Member Posts: 62
    edited October 2009

    hey gang!  i'm on tc x 6 -- first treatment was last friday on 10/16.  i've been beat almost everyday this week -- been in bed by 7 almost every evening, but i think i'm starting to get some wind back in my sails.  my tongue is sore and my gut is off, but i'm making it.  i dread having to go through 5 more treatments, but hopefully these treatments will knock out any cancer cells roaming around in my body -- i hope the same for y'all!!!

    take good care, 

    sammy Smile

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  • bettyelay
    bettyelay Member Posts: 11
    edited October 2009

    Hi guys,

    Stage III TNBC diagnosed on 9/2/09.  1st chemo tx was 10/2.  Cytoxan and Taxotere.  Can't do surgery until they shrink the tumor.  Invading into the chest wall.  1st tx went well.  WBC bottomed out on day 8 at 1000.  Got a bug and was done for a few extra days.  2nd tx today.  Had a HUGE reaction to the Taxotere.  BP bottomed out.  Passed out.  Thought I was having a heart attack.  And that took all of 4 minutes after the IV was started.  So have to go back Monday and try Taxol.  Hopefully I can tolerate it.  Lost all my hair between day 13 and 18.  Have 2 wigs, 1 part wig that you wear under caps, and lots of scarves and hats.  I realize there is a website for TNBC, but you guys seem to be more real about chemo tx's and side effects.  So hope you don't mind I'm here.

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Welcome Sammy, I've added you to the rollcall.

    Hi Bettye, sorry to hear you had such a rough day today. I hope Taxol works out better for you. Hopbird, who started on Sept 21, is on Abraxane. That seems to be better tolerated than Taxol or Taxotere, but the downside is that it's very expensive. Snuziq who started a couple of days before you also had problems with an allergic reaction to Taxotere, so I think she's switching to Abraxane.

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  • bettyelay
    bettyelay Member Posts: 11
    edited October 2009

    Thanks Sammy;

    Just completed TX #2 today.

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Bettye, how many treatments are you to have in total before surgery?

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  • Sido
    Sido Member Posts: 234
    edited October 2009

    azdiva - loved the nail salon story!  I've been dying for a manicure but have been forbidden since I saw the oncol said I was neutropenic.  DH has declaired me quarrantined for the weekend.  The good news is that I got some better pain meds and I can finally sit down for more than 10 minutes without it hurting!  We also saw the chiropractor who will be treating us for our injuries, but not for a little bit since I recon we'll need to heal some before being "adjusted."

    What really breaks my heart is that I found an oozing hematoma on my little Cooper.  When the vet shaved the area it is this horrible purple-black bruise/wound that we have to treat with hot compresses as the wound drains.  The vet thinks that it was from blunt trauma from some part of the van's undercarriage hitting him.  I hate to see him suffering like this, but at least the pain meds the vet gave us are giving him some relief.

    Be well and enjoy a se free weekend,  Sido

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  • Hopbird
    Hopbird Member Posts: 387
    edited October 2009

    Hi everyone...

    Sido, so sorry about your puppy.  It really seems like a cruel twist that you were hurt while going through all of this.

    I'm home from the party....I think I did a good job avoiding germs except that everyone is leaning in to talk to you because it is so loud.  Oh well...did my best.

    Mary is right that I am doing Abraxane...I can't comment on the cost because I'm getting it as part of a trial for pre-adjuvant.  Complicated story but I had a mastectomy with no chemo a year ago.  I was node negative, and everyone felt chemo was overkill, until the cancer showed up a year later in a lymph node.  Doctors didn't feel it but it was found on annual MRI clearing the other side.  Anyhow, I'm pre-adjuvant because they're doing the chemo before they remove the node.  They tell me Abraxane is better tolerated by most people because of the way it is formulated for delivery.  The downside........plan to WAIT for it.  At least where I go, they start preparing the drug when you get there, and the Abraxane takes forever to show up.   

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  • bettyelay
    bettyelay Member Posts: 11
    edited October 2009

    Not sure.  They were saying at first, chemo until Feb.  but tumor seems to be responding to chemo better than they anticipated.  He said today we may look at moving surgery up.

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  • one-L
    one-L Member Posts: 1,110
    edited October 2009

    Hello everyone.  I hope every one is doing well and is looking forward to a few days with no doctors, tests or treatments.  Just relax.

    One treatment behind me feels good.  Didn't sleep well again, got up about ever hour to go to bathroom, I guess that is a really good thing.  Had some acid refux, took a pepsid, that worked.  So all in all I guess I had a good night.  Little wobbly this morning, but moving around has gotten rid of that.  It is a beautify Saturday and I think my DH and I will go out on a date.

    How long does it take this stuff to get out of my system.  I know to stay well hydrated, but do I have to do 10 or 12 big glasses a day every day so I can go pee every hour?  Also, how long do I need to keep rinsing my mouth out, do you just do it all the way between treatments?  That goes for rinsing of the bottom also.  Maybe I'm lazy, but if I don't have to do it all the way between treatments, well you know what I mean.

    Thanks,

    Juannelle

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear 1L,

    Good morning!

    Yeah stay well hydrated for at least 48 hrs after chemo. Pee every hour or you will get kidney and urinary tract issues.

    Rinse your mouth before and after every time you eat. All through the treatment.

    Rinse your bottom after #1 and #2. All through the treatment. Believe me after a while you will like the clean feeling this gives you and stop using toilet paper.

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  • Piffken
    Piffken Member Posts: 91
    edited October 2009

    Hi MaryNY,

    Okay, I was able to find the Biotene for $4.49 for the mouthwash at Walmart and $4.99 for the toothpaste. I went to have my teeth cleaned the day before I started and they gave me 3 samples of the biotene to use. (It also had some gel stuff to rub in your mouth? Anyway, I went and bought the large bottles abyway and packed a separate little bag with th etrial size to take to work, 

    Besides that I have cuticle cream in my chemo basket, which helps prevent hangnail (supposedly common with chemo) and may help prevent lifting nails; I have some metamucil, Phillips Milk of Magnesia (has worked really well for me); some extra strength Tylenol for the day after the shot - and definitely!!! ask your doctor for a prescription to the freeze cream that goes on your port site. Invaluable and Dr.s don't tell you about it, you have to ask.

    By the way, the thread looks so colorful now with all the faces, I love how you've set it up. It'll be nice to see them disappear or change one by one. Can't believe I made it through my first one and am still alive and kicking.      

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Onty, that's a lot of top and bottom rinsing!  Juanelle, was it the need to go to the bathroom that disturbed your sleep or the steroids?

    Hi Piffken, you got your first smiley. You are sounding very cheerful. How long did your first Tx take? I got the lidocaine cream for the port yesterday. And yes, I had to ask for it. But the nurse said that I wouldn't be able to put it on myself the first day I go for treatment (Wed) as the port will just be placed on Monday and she said there will be a compression dressing on it that I'm not supposed to touch. 

    That's a good idea to have your teeth cleaned. I should have thought of that already. Unless I can get an appt on Tuesday, I won't be able to get that done.

    I filled my Rx for Dexamthasone and Emend yesterday. I'm floored at the price of Emend. I will need eight 80mg tablets (two per Tx). The pharmacy would only allow me to get a month's supply, that is four tablets. For this the pharmacy billed the insurance company $454. Of course the insurance company them paid their negotiated rate of $344. I had a co-pay of $40. So that's about $100 per tablet. 

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    LOL. Believe me the bottom rinsing will make you feel like throwing away TP for good :-)

    DH has been bottom rinsing for several years and loves it. I was not a big fan but now I am.

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    I don't understand why bidets are not more popular in this country.

    How are you doing the bottom rinsing? Cottonelle wipes? Splashing water on yourself or what?

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    I had my pre-treatment blood work and EKG yesterday. Everything looks OK with my blood tests except the white blood count which is kind of low. WBC = 4.4 K/mcL [4-11 K/mcL]. I know this is still in the normal range but probably a bad place to be starting as it will become more depressed with the treatment. Any suggestions for how I can boost it in the next couple of days?

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  • azdiva
    azdiva Member Posts: 201
    edited October 2009

    Hello Ladies!

    Notice I am over 50 posts now, so I can post more than 5/day.  Look out!  I am very verbose.

    I am learning so much from this board.  Unfortunately, I seem to be addicted to this board and spend many hours a day on it. But WOW!  There are so many smart, funny, awesome people.  I am very, very grateful that I found this place.

    Going to a 3-Day fundraiser/casino night tonight.  I am looking forward to seeing a lot of my friends, but not looking forward to being the poster girl again.  Fortunately (actually, UNfortunately), there will be several others with BC there.  I guess we can commiserate together.

    Getting a little anxious over next tx on Wednesday.  I will just have to get through it.  I'm afraid to actually write this (jinx factor), but maybe my hair ISN'T going to come out?  My scalp doesn't hurt and it isn't itchy.  The strands that are coming out COULD be from my excessive touching and feeling it.  Its sketchy appearance could be that it is just reverting to its normal state.  And maybe it is trying to prove me wrong since I have 6 wigs. Just a thought.  I'm at day 19 or 20.

    Cold is a little better.  Headache went away with the 2d cup of coffee.

    I hope everyone has a wonderful day, with minimal se's!  A special shout out to the gals who just had their first treatment.  You WILL get through it!

    Love to All -

    Laura 

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  • jeanl151
    jeanl151 Member Posts: 146
    edited October 2009

    Laura, I understand what you mean about being a bit "addicted" to this site. I often say I should do laundry, empty dishwasher or some other lovely chore and I find myself plopped at the computer checking out the latest posts.  Once blurry eyed, I get up and do something I should have done earlier!

       There is something about reading these posts.  It makes this BC seem a little less scary and certainly less isolating.  We have found people who understand every thing we are dealing with. The friends and family around me try, but sometimes I feel like I am making them sad. Not that I don't talk about it, I just don't want it to be all I talk to people about.

      Take care girls, I am off to wig shop. Looking for something cute and cheery...it will beat my short, round bald look!!

       Jean

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  • Hopbird
    Hopbird Member Posts: 387
    edited October 2009

    Jean here is a place where you can talk about cancer without feeling like you're bothering anyone.  Sometimes we need that, more than we need an empty dishwasher.

    Congrats to 1L and Piffken for feeling human the day after.  Aren't you glad you know a little now what to expect?  I'll never forget after my first chemo my husband looked at me and said, one down, 19 to go.  OK....somehow the 19 part didn't feel so good, but having one done was priceless!  (BTW, he was counting my non-chemo Herceptin treatments on my off weeks as part of the 20.)

    Laura, enjoy your function.  Sorry you have to be the poster child...I know what you mean.  BTW, be careful of people wanting to lean into your face and talk.  I went to a Halloween Party last night, (saw octomom, H1and N1, Jon and Kate with their attorney....Wink).  I had planned ahead so I would try not to eat the common food or get my drink mixed with someone else's, etc.  I hadn't thought about the face that in a noisy room people would move their face right up next to you to talk. 

    Mary, I don't know of any way to boost white cell counts before chemo.  At least the way my doctors do it, they work within a certain range of normal...so you can be out of normal range and them still give you treatment.  I wonder, though, if your cell counts are on the lower end if they won't prescribe the Neulasta or similar injection to be taken a day or two after your chemo to help your body build those cells.

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Hopbird, I'm to start chemo on Wed. I'm to get the Neulasta shot on Thursday. That was already decided. My WBC count may be nothing to worry. Sometimes I think if I have nothing to worry about, I find some little thing and dwell on that.

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  • one-L
    one-L Member Posts: 1,110
    edited October 2009

    Ladies,

    Thanks for all the kudos for the tx.  It  was  good to get through it.  I have felt good today, didn't do much, but I am tired tonight.

    Mary, I went to Wal-Mart and bought a set of  those squirt catsup and mustard bottles ($1.50) and put one in each bathroom.  I keep them filled with water and just squirt it on to rinse when I am done.  Seems to work pretty good.

    I have been rinsing my mouth each time I go to the bathroom, I have  the biotene mouthwash in one bathroom and salt and soda water in the other.  I  have not been rinsing my mouth before or after  I eat, I will  get right on that.

    Onty, I think the reason I didn't sleep the night before chemo was  partly steroids and the other just anxious.  Last night I didn't sleep, because I wanted to make sure I got up  and went to the bathroom often.  Part of it could have been the steroids also.  I also have acid relux anyway and drinking all the water makes it hard for me to keep everything down.  I have to sleep sitting up  and that is hard for  me to do.  So there were several things keeping me awake.

    I am also addicted to this board.  It comforts me so to know that  I can ask any question that I want and I get the answers that I need and do not ever feel embarrassed.  You are the best women and I love  you all.

    Juannelle

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  • MarieK
    MarieK Member Posts: 911
    edited October 2009

    Hi All!

    Just checking in...

    I'm glad to read that you are doing ok.

    I'm gearing up for my second tx on Monday (Laura you too?).  Checked my RXs and I've got enough left over from my first tx to get me through my second even though my onc did a 6 repeat on all my drugs.

    I've still got to check my chemo bag and make sure I've got it packed and ready to go - I guess this is something that we'll need to get used to doing before each tx!

    With my PICC line I was looking forward to a speedy infusion but today I noticed that I'm getting nasty blisters around the edge of the clear plastic dressing film used to keep the line down.

    I tried to peel the plastic off a bit - thought it was air bubbles under the dressing - and the darn blisters just burst everywhere (I know TMI but it was like a water balloon fight!).

    I had my hubby tape down my "plug" and we peeled back and cut the plastic away from the blisters.  I wasn't sure what to put on it so I went with good old Polysporin and I'm letting it "breathe".  I'm rocking the lopsided tank top look tonight!

    Needless to say we are staying in and doing take out Chinese!

    I hope the PICC line will be ok to use on Monday - the insertion site is bruised but looks unaffected by the clear plastic dressing or the blisters.

    1L - I only squirted for the first few days (I think they said the chemo would be in your bodily fluids for the first 48 hours only).

    I did the Biotene every time I wen to the bathroom but now I just squirt (with the Biotene) 2 x a day after I brush my teeth.

    So far I am UTI and mouth sore free (had the start of one on the roof of my mouth last week but used Kanka one time and it cleared it up right away).

    I'm on Day 20 post 1st TX with definite bald patches so I guess I'm on track with the hair loss time line!

    Today my scalp was itching like crazy and my hair was falling out all over my lunch - GROSS - so my daughter shaved it all off with a trimmer.  My head feels much better now - I was surprised how cold it felt even without my little stubble! 

    Well I hope you all have a good night and enjoy the rest of your weekend!

    Good luck to those of us who are going for tx on Monday.  I'll be thinking of you as I "go with the flow".

    Hugs to all,

    Marie

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  • Hopbird
    Hopbird Member Posts: 387
    edited October 2009

    Marie, maybe your skin is bothered by the adhesive on the plastic?  The stuff they put on me made my skin irritated...I didn't realize that was the problem until another lady told me she was allergic and they used something different on her.  I asked about it the next time and it must be fairly common....they reached into a drawer and got something different that didn't bother mine at all.

    Nancy, look at the tips for Neulasta...it makes my bones ache, and I think that's pretty common.  Some people swear by Claritin to make that better, I just used OTC pain meds.  And of course you are worried....this is pretty heady stuff.  I THINK if your white counts are close to normal they will still do chemo.  I think each doctor/facility does things a little differently, though, and the "line" is different for each one.  I had another thought.  I've always been told exercise helps your body build immunities.  I don't know if that has a darn thing to do with white cells, but a few brisk walks between now and chemo can't hurt.  (Or some other kind of exercise.)  Worst case it will help get rid of some of that pre chemo stress.

    Juanelle, hope you sleep better tonight.  It's probably fine if you "save" the peeing for a few hours now. 

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  • valeriekd
    valeriekd Member Posts: 287
    edited October 2009

    Good evening everyone, I relate to absolutely everything I have read on the boards tonight. Its funny but the first 3 wks post dx I was in shock and now just getting use to all the "firsts" w/ a little bit the same feeling w/o so much fear.  Will shave my head on monday and am nervous about that eventho I only have 1/2 an inch now-it seems like a little security will be gone -Cannot belive u still have yor hair azdiva! cool - 3/4 of mine fell out in a 36 hr time span - it would be neat if u beat the odds.

    Second infusion this thursday and I am not looking forward to the 7 days post tx but at least I know what 2 expect.

    But I have a question. Is anyone else tired, actually sleepy, almost all the time even 2 weeks post tx? I feel ok but I sleep soooooo much. Should I fight it or go with it? I excercise to try to get energy up but no go. Any ideas?

    I also love this board-u women r the best! Valerie 

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Valerie: I haven't started Tx yet, but I would think that if you are tired you should just go with it. "Go with the flow" as someone so aptly put it a few days ago. I think sleep is a great restorer.

    Hopbird: Good suggestion on the walks. It has been pouring rain here all day so I only got about a half hour walk with raincoat and umbrella. I'm hoping I can keep up my walking during chemotherapy. It's been the main thing keeping me sane the last few weeks.

    Marie: Glad to hear you are UTI and mouth sore free and dealing well with the hair issues. I just love your wig. Where did you get that one? I went to look at wigs on Thursday. I did pick one out that the store are holding for me but need to go back with an Rx. The one I picked is handtied with microfilament top. Looks OK on me but I hate the feel of the synthetic hair. I looked at the wigs on eBay but it's hard to choose base on a photograph. The same with the wigs in the TLC catalog.

    Juanelle: I'm not familiar with the squirt catsup bottles, but will check to see if I can find them in Wal-Mart. Now that you have done such a lot of flushing of your system, I hope you get a better sleep tonight.

    Azdiva: Six wigs! Have you worn any out in public yet? Hope you enjoy the function tonight.

    Piffken: how are you doing tonight. I'm watching you ladies who are getting AC more closely. You're my guides on what to expect when I start next week.

    Onty: You're going for #3 on Monday! You'll soon be graduating from the AC class.

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  • MarieK
    MarieK Member Posts: 911
    edited October 2009

    Mary the wig in my avatar I ordered from a local wig salon.  It was $650 and is made of 30% real hair and the rest synthetic.  It is hand tied with a microfilament top and a side part.  I call it my Katie Holmes wig.  I wear this one the most.

    The wig in the photo below is very similiar to my Katie Holmes wig only darker brunette, shorter in length at the back (cut on an angle to the front) and with a more defined bang.

    I bought it through eBay for $40 - I call it Uma (like from Pulp Fiction).  It's all synthetic with a lace frame and a skin centre part:

    Now for something completely different.

    This one I bought again through eBay and it was only $52:

    I can go out in the wind and turn my head upside down and these babies stay on.  Am I tempting fate?  Because I'm not even taping them down!  I just adjust the back and they stay on snug.

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Marie: Thanks for posting the photos.

    Do the synthetic wigs feel much warmer and heavier on your head than the Katie Holmes? Any tips for buying a wig on eBay? When I looked a few days ago, I found that many of the descriptions did not say whether the wigs were handtied or not. Also they did not say whether or not they had monofilament tops. I suppose one could just assume that they are all machine made unless it says otherwise.

    With your Katie Holmes wig, did the salon offer to trim it for you or did you just buy it as is? The place I went to said something about trimming and I think they implied it was included with the price. 

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