Starting Chemo October 2009

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  • MarieK
    MarieK Member Posts: 911
    edited October 2009

    Oh boy I sure am the Chatty Cathy today!  Sorry about hogging the thread today.

    One last question before I sign off for the night...

    Has anyone ever gone to chem on their own before? 

    My hubby was going to come with me but he's coming down with a cough/cold and I'm sure if I should take him or not.

    Also my son (who had the stomach flu last week) has a sore throat and is feeling flu like symptoms today too.

    It's a wonder I stay healthy with a house ful of sickies!

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

    Dee: that is so encouraging to hear how well you're doing. I'm closely watching everyone else who's on AC. Great to hear you are well enough to play softball. I hope I'm feeling as well as you this time next week. I walked eight miles today. Hoping that I can bank the exercise to keep me feeling well all week.

    Sido: I think the LGFB varies from one location to another. I went to two. The first one was great and there was a great sense of camaraderie amongst the women. Everyone wanted to chat and I think we were quite rude when it came to the makeup demo there was a lot of chatting. Our makeup lady was from Mary Kay. Prior to that there was a talk about scarves and one about wigs. The talk about wigs was the best part. Also they asked everyone there to introduce themselves and talk a little bit about why they were there. There were a lot of tears but as the evening progressed, tears were forgotten and we had a lot of laughs. At that event there was drinks and snacks too.

    I went to a second LGFB as the first one didn't provide free wigs. So I called ACS and they suggested going to another one nearby just for the wig. That one was completely different. Only two other women turned up besides me and they were there also just for wigs. They quickly chose wigs and were gone. There was no makeup demo although they had bags of makeup left out. They did give me one although I explained I had already gotten one at the other event. The location where I attended the first event later had an "eyebrow clinic and spa night." A lot of the same women showed up and it was much less formal with no demos. We all got a really nice eyebrow kit.

    Joanne: Glad to hear things are better on Day 3. Hopefully  Day 4 will see you closer to your old self.

    Arby: On your advice, no stockpiling of popsicles yet. I hope I get the loose pants syndrome too, but I fear I will go in the other direction.

    Hopbird, Onty: I can hear you belching from here :) I might be joining in the chorus next week. And Onty, good luck tomorrow!

    Laura: I can't believe that you went from braidable hair to egghead in one evening. Talk about taking the bull by the horns!

    Juanelle: You took an ice-chest and a rolling suitcase (that was you too?)! My brother is coming with me on Wed so maybe I'll ask him to get me icechips from the hospital cafeteria next door. Nurse said they don't provide either candy or ice. Nurse did specifically mention that it was particularly bad to take Vitamin E. However, even the American Cancer Society is not clear on whether Vitamin E can interfere with the effectiveness of radiation or chemotherapy.

    Meredith: You look so serene in that picture. One would think that you were sitting in a first class seat en route to an exotic location instead of being on the same journey as the rest of us. It's comforting to see that you seem to be handling it so well.

    I got a couple of those mustard/ketchup squirt bottles in Wal-Mart tonight. They really are ugly. I'm guessing none of us will ever want to use those red and yellow bottles again in a diner. Is there any alternative to these? 

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  • micheleboots
    micheleboots Member Posts: 1,993
    edited October 2009

    One-L

    Well now I don't feel so bad...at least I am not belching alone...LOL

    Gals

    I have to ask a question that has been on my mind...What does DH stand for?  I am sure when I find out I will shake my head...I will just have to blame it on the Chemo brain....

    I thought I was going through Chemopause, but nooooo it turns out that my body has decided to torture me for even longer this month...I had 5 days of spotting the BAM..Am I not going through enough this month....

    Well enough about me...have a good restfull night

    Michele

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

    DH = Dear Hubby or Damn Hubby or Damn Him!

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  • joanneasiata
    joanneasiata Member Posts: 719
    edited October 2009

    Hi all

    Finally i got my photo up or should i say my DH wich does mean darling husband for now any way lol i couldnt seem to get it then he came along and what do you know its me !!

    Michele

    im a belcher too ill admit to that i sound like ive been drinking beer down the pub all arvo my DH just looks in shock but as you know its soo much better out

    Maryk

    love the wigs you are having fun with them arnt you thats good ive bought 3 totally diferant ones ill take some photoes and get DH to put them up and maybe one of me getting shaved wich is the next step

    DEE

     im impresed and a big bit envious as well you have sailed through your first TX good for you and to top it of playingsoftball well you might need a chemo nap after that one hope  it does continue for u you might be one of the lucky ones im not im having a morbit time but its getting better

    ONTY

    love your description of dh take what ever is needed ah

    well im going to bed now hope  tomo will be good

    thanks again for the friendship

    Joanne

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited October 2009

    Hi Ladies.

    Wow so many posts to read.  Loved the wig pics!  I wear a full lace wig that is glued on.  LOL.  It takes some getting used to.  I think I will also purchase a wig that I can remove.  Sometimes I actually want to go bald..at least around the house.

    I normally get my ice chips from the onco nurse.  They work!  Havent had any mouth sores since starting.  I normally use the rinsing after bathroom for the first 48-72 hours after tx.  Then I use cottonelle wipes...super soft and really help.

    The claritin words really well with the WBC shots.  I do neupogen and I have had zero bone pain.

    I am feeling much better but tx 4 looms in the near future.  Thursday is my final AC tx.  Yay!!!  But unfortunately I then have to go through taxotore for 4 txs. 

    My thumb nails have a black moon on them.  Ugh.  I have heard if you ice your feet and hands during Taxotore that you can limit neuropathy fjrom setting in and also can stop nails from falling off.  Also I heard if you paint your nails black that can also stop nails from falling off.  I will be trying everything.

    To all the ladies who have just gone through their first treatment...Hang in there!!  Good days are coming.  Seriously.  They are right around the corner.

    Anita

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

    Hopbird and Michelle, I also have acid reflux because I have a hernia.  So I already take Nexium, so I am getting a double dose of acid reflux.  Last night was the worst.  I laid down and up it came, then I started throwing up.  It wasn't long, it was just long enough to get it out of my throat, so I could bet that taste out of my mouth.

    Sido, glad everyone is doing better. 

    Dee,  I am about the same as you, constipation, OMG.   I think I got it cleaned out yesterday, but what a rough day.  Other than that I still have no mouth sores, however, I go today to get my Neulasta and I am tired this morning.  Good luck on that softball  game, I admire you for being able to make it.  You go girl!!

    Good luck to everyone getting treatment today.  We will all be there with you.

    Juannelle

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

    Mary, you can go to Sallys and get some squirt bottles also.  They are not expensive, but they are clear and have a little top that goes  on it, so I guess you could  carry them with with.  You might try the Container Store, but they would be much more.

    Good luck  to everyone this week.

    Juannelle

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  • micheleboots
    micheleboots Member Posts: 1,993
    edited October 2009

    Ladies,

    Thanks for the DH info.  I figured it was something like that...I was thinking darling husband so something sweet like that....LOL.  Mine has been great through this crazy ride.  He keeps me laughing and that is what gets me through with my sanity..Laughing

    Well it is day 10 and still feeling good.  I keep waiting for the big energy bonk.  The only thing I feel, is quilt for not being at work...I miss my coworkers so much.  I work in a retail shop and the place is crawling with germs..I am scared to go and get myself sick.  I pop in every week or so just to visit, but I have to stop everyone from giving me hugs...

    Still have my hair...for now.  When mine starts to go my DH is planning to buzz it for me.  We thinks it will be fun to give me a mohawk and take some pictures...perhaps a ponyhawk...Why not have some fun.  Perhaps I will make one of the pictures my profile photo on facebook...That would be a crazy way to let ALL my friends know what is going on..  We were also thinking of either  getting holloween bald heads  and using them for our xmas card photo this year...Either that or everyone wears santa hats...any other good ideas for xmas card photos..As you can see we like to have fun in our house.

    Later cancer chicksWink

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  • MarieK
    MarieK Member Posts: 911
    edited October 2009

    Hi All!

    Today is TX #2 for me.  I've got my bag packed and I'm ready.

    Yesterday I went to the hospital and had my PICC line dressing changed.  After seeing my skin without the dressing I don't think I'm allergic to the dressing at all - I think I'm actually allergic to the PICC end plug.  The nurse put on one of those mesh stocking thingys over the dressing and last night I poked a hole in it so that it is between my skin and the plug.  It feels so much better and less irritated.

    Not sure what can be done about that but I'll check with them on Wed when I go to the IV clinic again.  Maybe it will be just a matter of keeping a barrier between it and my skin...

    This PICC line sure is a lot of maintenance!  I hope it settles soon - the only bright spot so far is that I am not allowed to vacuum until I get it removed!

    Wish me luck ladies and I'll be thinking of you!

    Marie

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

    I'm at the port before the storm. I'm sitting here in a hospital bed with an IV infusion of antibiotics. Waiting to be brought downstairs for the port placement. That may take a while.

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  • newtonville
    newtonville Member Posts: 43
    edited October 2009

    hi Mary,

    Your questions are awesoome.i want to know too after chemo ends,howdo we takecareof our baldheads? any special shampoos or vitamins toget.i plan on asking my onco next time.  all i heard about so far is babyshampoo is good when the new hair is growing.   if you ladies know any answers, that would be great!!!

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  • txstardust
    txstardust Member Posts: 599
    edited October 2009

    Well ladies, I've been MIA since last week - ended up in the hospital (still here, I just today finally got my computer brought to me from home).  My WBC was .7 when I showed up in the ER last Wednesday night.  This has been a real nightmare.  Today the doctor said the words I've been aching to hear "You can probably go home tomorrow."

    Please, everyone be careful with hygiene!  They've done tests aplenty and don't know exactly what I got - all that came back positive was for a UTI - but whatever it was, it was a doozy.  I'm sure I caught something at school.  Anyway, I didn't want y'all to think I forgot about you - I've been jonesing for my computer so I could get an update on all of you!  I haven't read over the old posts yet (I think there are 6 pages that I missed!) but I will.

    Let's hope the doctor's right and I can go home tomorrow!

    Peace to all,

    Shelby 

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  • micheleboots
    micheleboots Member Posts: 1,993
    edited October 2009

    Mariek,  What no vacuuming.! I was never told this!  I must report that to my hubby...

    Speaking of Hubby.  I think my family is trying to kill me...The week before my first chemo my son comes home with a wicked nasty cold.  I managed to stay away from that.  Then last week my daughter comes home with a worse chest cold.  She has been sick since Thursday.  I stayed away from that as well.  Now today my hubby phones from work to say he will be home early as he feels awful and he turned green at work and has the sweats...AAAHHHH.  How much can one chemo patient take..

    But on the up side, now I don't have to vacuum.Undecided

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  • MeredithK02
    MeredithK02 Member Posts: 86
    edited October 2009

    Shelby, I'm so glad to hear from you!  What a nightmare!

    I've been laying really low since the tx Friday.  I have zero energy and don't know if I'll be able to go back to work tomorrow.  How much time are you ladies taking off?  Until today I was probably sleeping 16-20 hours a day, so I can't imagine being back at my desk!

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  • clariceak
    clariceak Member Posts: 752
    edited October 2009

    Meredith  

    We're on the same schedule.  I was totally knocked out. My first chemo was friday afternoon, and I did make it out briefly on Saturday afternoon.  Sunday was a totally lost day.  I had only been able to eat a few crackers from Friday - Monday, so I think I was weak from lack of food as well.  I discovered popsicles today and I'm hoping I can add something nutritional to my diet soon.

    Hang in there.

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  • valeriekd
    valeriekd Member Posts: 287
    edited October 2009

    Hi Gals! Great to read everyone's updates at the end of the day.

    Meredith my recommendation is to refrain from work til u really feel better b/c I think I set myself  back going back 2 early and felt so discouraged when I lost a few more days. I ended  up taking 10 days and then have worked 1/2 days and then some from home. I worry if people push it too hard too fast w/ the flu around -it really puts us at risk as we r so compromised already.

    Stardust Welcome back- hope u r home soon!

    Here's to minimal SEs for all! (  and good health to all, my daughter has the swine flu - I'm wishing us BOTH well!!)

    Love to you all - Valerie 

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  • joanneasiata
    joanneasiata Member Posts: 719
    edited October 2009

    Shelby

     you poor thing im in australia and were going into summer here so were kinda out of the flue season i do hope you will pick up really fast

    Good luck ladies  day 4 for me after 1 TX still feeling like shit i carnt get over how tired i am and some days i feel like ive got a bad hangover  i wouldnt even contimplate working im a hairdresser and the amount of germs flying around and id hate to see what kind of work i would do a bit scary

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

    Mary, I hope all  went well today.  I know it was a long long day.

    I am on with Meredith and Clarice and today has been my worst day.  I went into today to get my Neulasta shot and my blood pressure was low and the way I was feeling I can only guess that my WBC was off also.  They did give me the shot and made me stay until my blood pressure came up.  I am just really tired today.  I am not working this week, I just want to see how I do.

    I hope it all went well for the gals that got treatment today.

    Juannelle

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

    Dear MaryNY, All,

    I completed AC #3 today. Doc added Tagamet to the pre-meds to help reduce acidity. I'm definitely feeling less bloated this time. The infusions were uneventful. I took Tylenol before Cytoxan which helped a lot with sinus pressure and headache and they were able to give Cytoxan over 45 minutes. During the first 2 chemos, even 60 minutes was difficult for me so this was a nice surprise.

    In other news, my UPC nbrs are a bit off compared to my baseline nbrs. Not sure if this is just usual variation or indicates concern.

    I will write in more details in the night.

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

    Onty, congrats on #3.  Glad all went well.

    Big Hug,

    Juannelle

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  • Hopbird
    Hopbird Member Posts: 387
    edited October 2009

    Shelby, sorry you ended up in the hospital..hope that will be all of that nonsense!

    Michele...yikes!  Maybe you need a mask to wear at home!  Good luck staying away from the germs...it's hard to be the mom with sick ones at home.

    Sorry some of you are suffering from the side effects.  Remember, it will let up...and you'll have some good days.

    Onty, what is does the number that is off measure?  I know my liver enzymes have climbed and while they continue to give me the drug it worries me a little.  I DO know there is a point at which they will quit giving you the drug and send you home, so I tell myself as long as they're OK...I guess I'm OK.

    I had a Herceptin only day, and other than a little indigestion...I swear it comes from the port flushing more than the drug!...I'm good.  Hopefully the rest of my week will be good and I can get in for number four next week.

    Have a good evening, ladies!

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited October 2009

    Shelby - wow sorry you are in the hospital.  I heard that all of us will take a trip at least once.  Ugh.  Wishing you get to come home today as promised.

    Michele - Wow...yeah you need to wear a mask.  What would happen if we get swine flu?  Have any of you ladies asked onc?

    1L- yes the dreaded fatigue SE.  It does get better though.  I find days 7 on I start feeling much better.

    Onty - I am going to try the 1000 mg of Tylenol.  I really hate the sinus pressure more than anything.

    Well, not srue if I told you ladies, but I still have an small open wound from my lumpectomy.  I had an infection and they had to reopen the wound so that it could heal.  The wound was healing wonderfully until yesterday.  Some brown stuff that did not smell very good was in my guaze bandages...UGH.  I am hoping that does not mean I have a new infection.  I go to see my bs tomorrow to make sure no new infection has surfaced.

    I hate chemo!

    Anita

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  • bettyelay
    bettyelay Member Posts: 11
    edited October 2009
    Had my 1st TX of Taxotere and Cytoxan on 10/2 with no problems.  2nd TX on 10/21 had a terrific reaction to Taxotere.  Tried Taxol yesterday with same reaction.  Now he is switching me to Adriamycin.  Any feedback on this drug???  The heart damage worries me a little.  They did a baseline Echo yesterday.  No problems on it that I'm aware of.  Any thing you can offer is appreciated.  I don't often post, but the info I get from this has saved my sanity several times.  And I have to discuss that "no vacumning thingy"Wink
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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited October 2009

    Andriamycin is a typical chemo cocktail with cytoxan.  A lot of bc chemo patients are on this cocktail, of which I am one.  Yes the heart thing scares all of us on this cocktail, but itis one of the strongest cocktails you can be on to kick cancer's butt.  I have had normal chemo SEs with this cocktail.  If you have any more specific questions I would be glad to help.  I get my 4th tx of thsi cocktail on 10/29.

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

    Bettye: I'm another one on AC. I'll be strarting tomorrow. If you look at the opening post you will see that a lot of us are on AC. I too was worried about the cardiac toxicity. I had a MUGA scan and when the score came in low normal (51 on a range of 50-70), the onc sent me to see a cardiologist who ran an echo. She said my heart was fine and I should proceed with the Adriamycin. She did say there was the option to taking ACE inhibitors to reduce the risk. I will mention that to the onc tomorrow.

    I had my port inserted yesterday. I felt fine for the first few hours but since then it's become very uncomfortable and quite painful. It hurts to raise my right arm, to twist my neck, get out of bed, even to bend. Should it hurt this much?

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

    Mary, my port hasn't hurt at all, unless the dog steps on it.  Mine is on the left side and is placed above my bra line and to the right of the straps.  I have a big bruse, but it hasn't hurt at all.

    I had my Nuelasta shot yesterday and my neck hurts and my left hip.  I still feel like I have the flu, but that is what my doctor said would happen.  I have been sleeping lots, just can't seem to stay awake.

    Juannelle

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  • azdiva
    azdiva Member Posts: 201
    edited October 2009

    Hi Ladies - 

    I went to the LGFB meeting last night.  Spent a lot of time on makeup, but not enough time on eyebrows.  Since I do makeup for shows and events, I didn't learn a whole lot.  I could have used some practice on eyebrows, but I still have mine so its not that big of an issue.  They had wigs for us to try on and take home, but I didn't take any.  Because I now have 7 WIGS!!  Yes, I bought another one yesterday when I went to pick up the special order wig.  It is a halo with removable bangs so I can wear it under hats and scarves.  Very cute . . . for a wig.  I did meet some very nice ladies and it was good to talk to people who are in the same circumstance.  Some of the makeup we received was very nice!

    Woke up this morning and realized that tomorrow is chemo day.  I have to start taking those steroids again.  I am not looking forward to feeling sick again.  

    I don't know if anyone else does this, but I make a graph of all of the meds I take in my journal.  I have three sections for each day - morning, noon, night - and I write down each drug I take regularly.  I also leave plenty of space for extras.  Then, when I take something, I write down the time.  For instance, I took my thyroid at 545 and my decadron at 645.  This helps me remember that I DID take what I was supposed to, and lets me know when I can take a 2d dose (helpful when you take pain meds!)  I keep my journal with me and also write down all of my issues/questions.  Then the day before my onc appointment I go through everything and come up with my list of questions for the appointment.  

    If anyone else has a good system, please share! 

    Loading up on water for the blood test.  Hope everyone has a great day.  Good luck to all going today!

    Laura 

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  • clariceak
    clariceak Member Posts: 752
    edited October 2009

    Laura

    I just started chemo and realized I need a system for tracking drugs and a little weekly plastic container won't do it. 

    Mary - sorry your port is bothering you.  I've heard it's quite common to have that kind of discomfort, particularly in the neck area, but it resolves itself in 3 to 4 days for most people.  I hope it feels better soon.

    I think the steroids kicked in and I was partially awake all night.  I was really tempted to take a tylenol pm but I don't want to add any more drugs to my systems.  Is anyone else feeling the agitated from steroids? 

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  • MarieK
    MarieK Member Posts: 911
    edited October 2009

    Good Morning Ladies!

    Michelle - make sure that you wipe down your phones, remotes and computer keyboards with antibacterial wipes.  Actually it wouldn't hurt for all of us to do this during flu season when these items are shared.

    Bettye - the no vacuuming was advised for PICC line people but if you don't have one and want to get out of vacuuming I'm sure we'd all back you up!

    Swine Flu vaccine - I asked my onc yesterday and he said that anyone born later than 1957 should get it.  So I should get it I guess. I'm going to call my GP and see when they are running clinics.  The best time to get it would be when you are in your good weeks - I'm on a 3 week cycle so week 2 or 3 would be the best time for me.

    I also asked him about removing my right breast - this has been on mind since my initial diagnosis - and he said "sure" but that we would revisit that once the left side has been dealt with.  I have had microcalcifications on the right breast since 2005 that we've been monitoring but the left side tumour came out of nowhere and needed immediate attention.  I still worry about the right and would ike it GONE too!

    I realized something - I cannot have my blood pressure taken anymore with those automatic cuffs.  Not on the left because of SNB (risk of lymphedema) and not on the right now because of the PICC line - the only way to do it is manual compression.  Something to think about if you are in the same situation.  Please be careful - the tech at the chemo clinic was all set to do it with the machine yesterday untl I reminded him.  So be your own advocate on this!

    So yesterday's TX (#2 for me) went well.  Super fast with the PICC line only 3 hours instead of 5 1/2 like the first one!  No reaction to the Epirubicin so that is good news and no vomitting and nausea!  Yay me! 

    My problem the first time was a really bad headache that added to the nausea and prevented me from taking my meds.  The headache was so bad smells and tastes were really off and let to vomitting.  I didn't even think of taking anything other than prescribed meds and that was my mistake.

    THIS TIME - I took Tylenol Extra Strength right after the Cytoxan infusion just as I was starting to feel the head pain and again before I went to bed (my treatment was in late afternoon).  I took more Tylenol this morning after I took my Krytil & Decadron. So far so good!

    My hubby took the day off work and has taken the kids to school.  I should say kid because only my daughter is going to school today - my son is sick with a sore throat and cough (probably swine flu!) and he has taken him to the clinic to have it checked out. Hopefully it's just a sore throat or strep throat (never thought I'd be hoping for strep!).

    Yes I am wiping down the computer keyboards, remotes and phones as I type this.

    Hugs to all and Happy Healing!

    Marie

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