**NEW** Starting Chemo March 2009

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  • cpanasci
    cpanasci Member Posts: 35
    edited March 2009

    Thanks for the advice. I saw the add image icon, but have yet to post any to a url, so I was trying to upload from my hard drive. One more thing to distract me!

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  • mmdj43
    mmdj43 Member Posts: 45
    edited March 2009

    Hello Ladies,

    Once again I fell behind schedule on reading and posting.  So I'm going to sum up with this one, then hopefully I can stay on top of it to post to others going forward.

    ginagina:  Congrats on taking on the responsibility of leading the pack of Warrior Princesses!  Btw, not sure if it makes a difference, but can you change my cocktail to say TCH/6 instead of CTH/6?  Again, not sure if there is a CTH but mine is definitely TCH/6.

    Okay, my first treatment was on 3/2.  Fine the day after but then for 2 days I developed a nasty cold that kicked the crap out of me.  Then afterwards I was fine.  Aside from Herceptin with the TCH cycle, I'm also getting Herceptin every week.  So far the SEs were minimal with the exception of stomach upsets and diarrhea for one night and huge acne on my face, my breast (that has the cancer) and my back.  I was told by another doctor over at Duke that taking Herceptin every 3 weeks is just as effective as taking it weekly.  Anyone know whether this is true or if there really is a difference?  Cycle 2 is on 3/24.  On 3/14 I chopped my hair off and made it extremely short.  When I post my before and after pics you'll see how long my hair was.  I thought I was going to be a mess but I was completely fine.  My husband and daughter (6 yrs old) were there.  My hairstylist pulled my hair into a tight ponytail then snipped it off which I will be donating to Locks of Love.  I had my wigs ready and started wearing one to work on Monday (3/16).  Amazingly, no one noticed the difference.  That's the beauty of a human hair wig.  Go figure!  Now, about 2 1/2 wks after my first treatment, my short hair is finally thinning out.  We'll see how I will react to having 'No' hair.  I just need to remind myself that it's temporary and my health is more of a priority.

    As I mentioned, I have a husband and a daughter, and a cat named 'Ice'.  I swear he has ADD and an Italian gene in him (I can say that b/c I'm Italian myself and I know I can't stop talking.  LOL).  Ice starves for attention and affection despite all of it that he's getting from us. 

    For those who haven't attended a 'Look Good, Feel Great' class, I highly recommend you go to one.  If nothing else, for the free products they give.  For me, it was worth the 2 hours of my time to be there and I walked out of there with a bag full of products, some inexpensive but most appeared to be b/c of the famous name brands.  Plus it gives you the chance to try new products without having to pay for them and have them sit in the cabinet for years like I used to do in the past.

    Another btw, I keep forgetting to ask my Onco, but why are we restricted from being in the sun?  Is it that we can but need to be covered from head to toe or we shouldn't at all? 

    And a big welcome to all the new princesses.  Sorry that you've had to join us, but this forum is filled with wonderful tips and tricks that your Onco or the nurses don't tell you.  And most of all, you are not alone and there are so many wonderful warriors here to help you get through this crazy curveball!

    Whew, now hopefully i'm all caught up. 

    Mary

    Smile

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  • sakura73
    sakura73 Member Posts: 467
    edited March 2009

    gymmom your  pixie cut is so cute!! I hope I look half as nice when I get mine done on Monday.

    ginagina - hope treatment goes well.

    mmdj43 - I have been told to be careful in the  sun while on chemo - hats, sunscreen etc. But we do need some sunlight for our Vitamin D quota! That's great news about your  wig. Pictures please!

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  • ccbaby
    ccbaby Member Posts: 985
    edited March 2009

    Thanks Mom of Boys and  Gym Mom.

    I am a little nervous about my first treatment tomorrow. I am more nervous about it then I was when I had my surgery. Maybe it is because I don't know exactly what side effects will affect me. My doctor changed me to carboplatin, he said it causes less nausea. And of course I will still take herceptin for a year.

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  • NanaA
    NanaA Member Posts: 293
    edited March 2009

    mmdj43  - I am set to start 12 weekly doses of the T in you cocktail (taxol) along with herceptin on 3/24

    and my onc told me this week I might as well do the herceptin only every 3 weeks as it would save me time the other two weeks and would be just as effective, so it sounds like what your doctor told you. Hope you stay healthy thru this time.

    Since I am just a stage 1, I may get by with only the taxol and herceptin for chemo, he is considering 4 doses of the cytoxan (the C in your cocktail)  every other week after the taxol is finished.  It is still up for discussion, since I am also doing radiation and and herceptin for a year   and femara after everything else is done. 

    Ginagina - You left the H for a year out of my cocktail description , if you change mmdj43's you can fix mine too.  Not that is that big a deal but that way we know who is in the same boat having the her2+ and having to take the herceptin. 

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  • ginagina
    ginagina Member Posts: 327
    edited March 2009

    NanaA & mmdj43 - You got it! Changes on the way.

    Deemdee - welcome aboard!

    Luv2Sing - I am updating your stats as well

    Everyone else - feel free to paruse the roster and let me know if there are any changes you would like me to make. It is YOUR list!!

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  • ginagina
    ginagina Member Posts: 327
    edited March 2009

    Hey Didle20Diane (I feel like singing  "Hey Didle Didle") I like what you did with your diagnosis/signature. I am copying YOU!

    Thx for the well wishes. Have a great Friday (and possibly a great weekend). We will be chatting soon!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    This Post Moved from Previous March Boards to Here 

    10 hours ago Sessna1 wrote:

    Hello Ladieeees,

    I received a shot of Neulasta for low white blood cell count on Monday, and now I know what "bone pain" is in your hips.  Whoaaaa.  I haven't dropped off the boards, I'm just resting a whole lot.

    DebbyB, welcome, and I'm sorry that you have to join our club, but you will like the members.  Super ladies they are.  That insurance company!  Grrrrr.  Don't they know that you have to steel yourself to fight this and take the toxic meds, making a person wait is this side of cruel.  In my opinion, it is, yes, it is.  Do you have your nausea, tummy upset, etc. meds readied?  I haven't had to touch my laxative, but all the others have been tried out.

    I drink plenty of water to try to plump those veins - I don't have a shunt.  Drink water until you could make a baby camel cry and say "Uncle," okay?

    Britt - Your welcomes are so needed, and I thank you for them.  Bless your heart.

    susan13 - I can't let anyone I know see your icon, but it made me burst out laughing.  I intend to get into remission and then wear that pink backpack.  That's MY way of saying what I want to get across.

    Dawnmrn1 - Decadron.  Dexamethasone.  Yes, yes.  I read the side effects of that bad boy and semi-freaked out.  Steroids?  Cortecosteroids?  What?!!!  My Oncologist gave me 8 mg over three days, so, 24mg total, and I think I'm reading that there's some in the IV drip, too (10mg).  Tis a necessary evil, but I don't like anything messing with my sleep.  I know when I have super weird dreams that something isn't right - I usually don't recall my dreams at all.  I suffered the first night, stayed wide awake, ended up watching the end of "Harry Potter and the Chamber of Secrets" till about 2:00 a.m. on cable. Yell  Oh, how cruel that Decadron can be.

    This is almost like a game here - figure out what the pain is.  Look at my notepad to see what medicine I took last and when.  Take medicine accordingly.  Do 15 minute chore.  Lie back down.  How do people go to work and do chemo at the same time?  I'm too concerned about the options, i.e., uh oh, is that burp?  Hmm, maybe a tummy cramp.  Nausea?  Dizziness?  Do I need to get to the bathroom and sit?  Headache?  Are my glasses dirty or is my vision blurry... no... sun sensitivity?  My favorite side effect of being woozed is waking up believing that the doorbell has been rung.  Praise God that the sound is pretty distinct, and I can tell when I've just imagined that I heard the doorbell.  (smile with me, please.  It is kind of funny... just a little bit.)

    Next round, Cycle II, March 30th.

    Love in Christ,

    Sessna1

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    This Post Moved from Previous March Boards to Here 

    9 hours ago Sessna1 wrote: cpanasci - ???  Your nurse wore a haz mat suit?  My techs only wear haz mat gloves for PT Scan/Bone Scan.  That metal incased needle in the metal encased box is a real stunner, I tell you what.  Blew up your vein... I apologize.  What does that mean?  I have rolling, collapsible veins, but I can't say that anyone has ever "blown one up."  We are kindred spirits, I was doing well 10 a day mi. on my exercise bike, then, chemo took my energy.  Day 4, napped on the nice, cool, bathroom tile floor.  Had no energy to make it to the bedroom.  Glad that I keep that floor clean.  Trying to put more red meat in diet (Oncologist said to!) and get back on that stationary bike.  Yes, khant dog, ... what am I saying?  Thank God, I shall not deny Him.  He means too much to me.  I am experimenting on myself.  My hair does not see the sun.  I am gently using a daily leave-in conditioner, and I have an every day wig and a just out of the salon wig.  I'll let you know on days 14-28 what happens.cakelady - I love your name.  I love lemon Bundt cakes.  Hey, Long Beach, California, people - try Creative Cakery.  I have been a satisfied customer since 1987, yes,  1987!  They have moved, enlarged, and franchised.  They know my face by sight.  I am THAT regular of a customer.  I no longer cook cakes for friends/family.  Much easier to not stress the oven and take the glory for knowing where to get delicious Bundt cakes decorated to order.nasharayne -  We ladies should be able to shame that place of business into doing business right.  What nerve!  They didn't just send you home with the wig on a foam head - they boxed it and you couldn't see it!!!  Wrong wrong ... so wrong!!!  Ladies, check with your NP and see if she (he?) has recommendations for reputable merchants who cater to alopecia/chemo hair loss patients.  Can you get your current hairdresser on- board?  Don't shop at the last minute.  Don't shop in the rain.  Don't go alone to shop - don't go sad to shop - if you get a bad vibe - LEAVE.  That's for any place of business.  Take your money elsewhere.  Learn if you have good gut instinct, and if you do, use it, please, please!  There are so many merchants willing to sell you the right wig, show you how to care for it, fit it on your head - and you leave that store wearing your wig, ladies.  Once the one you choose comes off your head, that proprietor should hand it to you on a head form with a pink bag over it from the store.  It's yours.  You'll pay good money for the darn thing.  Britt, Gina - okay,  now I'm confused about the Chemo Start March Boarders 2009.  If you right click on the "**NEW** Starting Chemo March 2009" at the top of this post and choose "Open in New Window," option you get to go to the new board.  I think migrating data is a minor pain, so, I'll just keep checking this board first and then bouncing over to the other one.Okay.  My pain meds are up and kicking in.  Time for the daily errand.  Let's all be careful out there, and I will learn to write shorter posts.Sessna1
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    This Post Moved from Previous March Boards to Here 

    9 hours ago Sessna1 wrote:

    SurprisedHere's a great link for wig info related to chemo induced hair loss:

    http://www.cancerandcareers.org/women/appearances/5018/?gclid=CMjWssC7_pgCFRxNagodVX7DnA 

    And!  Here is some gold to pass along.

    Do NOT ask your medical provider if wigs are covered under your plan.

    They will all say, "No."

    IF wigs for chemo/alopecia are under your plan, here are the magic words on a doctor's prescription that must be used to get them to pay.

    RX: Full Cranial Prosthesis for Chemotherapy-Induced Alopecia

    Diagnosis:  (Example:  Breast Cancer 174.9)

    The RX MUST be written on the receipt, the sales receipt, for the wig, er, Full Cranial Prosthesis. Surprised

    Blue Shield of CA pays up to $500 I'm told by the wig store owner.  Don't quote me, call your specific provider!!  Every year changes medical benefits, but in our favor, they KNOW wigs are getting more expensive AND better tailored to our needs.

    I have to educate my hairstylist.  When I told her that I thought the Beverly Johnson wig was $80, she said that a handmade, tailored, real hair wig would be a "little bit more."  Then, she told me $350.  My dears, that is MORE than a little bit more.  I wish she would have been honest and freaked me out from the get go.  However, her price rivals the non-custom made, synthetic wig - and I appreciate her discounting my wig.  She is a gem. 

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  • Ricki13
    Ricki13 Member Posts: 80
    edited March 2009

    Hello ladies

    Day 17 - 5 days since I got a buzz cut and my hair is finally coming out and leaving patches.  Up until now it just seemed to be getting thinner and thinner.  Sooo weird!  I am practising my head scarf tying skills.  It takes some effort to get it right and not look like a pirate or a fortune teller!

    Hope everyone on cycle 2 is doing well (mine is on Wed) and also any newbies who have come on board, welcome!

    R xo

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  • Ricki13
    Ricki13 Member Posts: 80
    edited March 2009

    Hey Cyndi...my head has been super itchy for about a week or more. I think it's definitely one of the first signs.

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  • Ricki13
    Ricki13 Member Posts: 80
    edited March 2009

    mmdj43 - My understanding is that we need to keep out of the sun as we have less ability to heal and increased sensitivity while on chemo and an ordinary sunburn could turn bad; get infected etc if we're not careful.  I'm as white as Caspar so this is business as usual for me!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    Gymmmom -  Yeah, the itchy head thing is the start.  You're 4 days behind me.  Yesterday at dinner the hair thing came up in discussion.  My husband and son didn't believe me that it was starting to come out.  I reached up and took a gentle tug and came away with a wad.  We all said " holy crap" in unison.  This morning I filled a brush.  Tomorrow it goes.

    mmdj43-  Hard to stay out of the sun eh?  I have a nice tan on my face from the first week of northeast sunshine.  My lilly white scalp is going to be a sharp contrast.

    buddy - Our chickens are all leghorns.

    Gina -  Good luck today.  Thanks so much for taking over this board.  It is such such a great place to keep in touch with other in the same situation. 

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  • mmdj43
    mmdj43 Member Posts: 45
    edited March 2009

    ginagina - Thanks for making the change on my cocktail!

    Sakura73 - Thanks for the tip on the Vitamin D; I'm actually taking supplements because my D level was fairly low.  Pics will be coming soon!  Promise!

    NanaA - Actually my cocktail is Taxotere, Carboplatin, and Herceptin.  However, I do know many ladies, such as yourself that is taking Taxol.  I believe they are somewhat in the same family.

    NYDeb48 - I have sensitive skin as it is so I guess staying out of the sun would be a wise choice for me.  So where in NY r u from?  I grew up in Queens then lived on Long Island for about 11 years. 

    Ricki13 - I'm pretty fair-skinned myself but every once in a while would be nice for me to get some color.  And with my husband being hispanic and dark-skinned, we look like an oreo cookie on a hot summer day!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009
    mmdj43 -   I live upstate in Naples , a small town in the finger lakes.  My son dated a girl from Long Island all through college.  She lives in Massapequa.  They were planning on moving to Queens, but recently broke up.
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  • gymmom8
    gymmom8 Member Posts: 86
    edited March 2009

    When I was given Adriamycin (sp?) at my first tx, the nurse did wear protective gear.  I wouldn't call it a haz mat outfit but he was protecting himself.  He was cool about it though.  He also made sure I was protected incase anything dripped where it wasn't supposed to, which it didn't.  I guess we have to realize these are truly harsh chemicals they are putting into our systems.  I just keep reminding myself that it is all to help me live a long and healthy life.

    The family is taking me out for a belated b-day dinner tonight.  I am already thinking about all the things I want to order because I've been able to eat the last couple of days!!  My mouth is getting worse with sores and I have a funny feeling on my cheeks but I was prescribed this "magic mouthwash" to use if it gets too bad.  I just hope it doesn't get worse during the day so I can enjoy dinner tonight.

    Lastly, I actually slept last night!!  YEAH!  I switched back to ambien, then propped my pillows into more of a sitting position.  I got about 6-6/12 hours of sleep.  I feel so much more energized today. 

    Best of luck for tx's today!

    Cyndi 

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  • jdeking
    jdeking Member Posts: 408
    edited March 2009

    Good luck to everyone getting treatment today (gina, rusty, ccbaby!!)

    I hope everyone has a great weekend, and feels really good!

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  • MichelleinSJ
    MichelleinSJ Member Posts: 133
    edited March 2009

    Lots of posts since I last checked!  Didn't I check yesterday?  Man, you guys are active! 

    And of everything, what stuck with me more than anything is 125,000 chickens.  OMG!

    My hair is buzzed.  It started to fall out yesterday, and my wig appointment was last night, anyway.  The woman at the wig place tried cutting it very short, and it looked awful.  It actually looks better buzzed, but it makes me sad.  The wig.  Well, it might just be worth the money.  It turned my deep frown upside down.  It looks like me on a really, really good hair day.  I guess ... me on the way home from the hair stylist.  I'll put pictures on snapfish and try the instructions.

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  • marshall2000
    marshall2000 Member Posts: 110
    edited March 2009

    Good Luck today to gina,ccbaby, and rusty.

    my tongue feels like it has a sunburn today and everything tastes wrong and my hands and feet are freezing.

    i told my cancer last night.  SILENCE!!!...... I KILL YOU...   ( i am a huge Jeff Dunham fan--he is a hilarius ventriloquist check him out on you tube for some good laughs)

    MichelleinSJ: I'm glad you turned your frown upside down,i hope mine does the same when my time comes. you must have gotten an excellent wig  because your picture looks great with your real hair,(i could only wish i had hair like that to begin with).

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  • nicole0714
    nicole0714 Member Posts: 48
    edited March 2009

    Sessna1,

    Just wanted to tell you your posts make me laugh. Keep writing the long ones! So funny about the metal incased needle in the metal incased box for the PET scan. I thought the same thing!

    Thank God for these boards. It is so nice to have others going through exactly what you are at the same time.

    Nicole

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  • MichelleinSJ
    MichelleinSJ Member Posts: 133
    edited March 2009
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  • MichelleinSJ
    MichelleinSJ Member Posts: 133
    edited March 2009
    After cutting off my ponytail on Wednesday ...
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  • Britt
    Britt Member Posts: 731
    edited March 2009

     . . . and?

    What happened?  Inquiring minds want to know . . .Cool

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  • mmdj43
    mmdj43 Member Posts: 45
    edited March 2009

    NYDeb48 - When I first moved to Long Island, I had moved to Massapequa; funny thing.  Sorry to hear about your son and his girlfriend.  I'm sure he'll fine another sweet girl that he'll just fall head over heels for and marry. Smile

    MichelleinSJ - Can't wait to see your pics.  I still have to post mine.  Hopefully I can post over the weekend. 

    marshall2000 - You crack me up!  I have to check out the youtube vids of Jeff Dunham.  Too funny!

    Everyone have a wonderful weekend!

    Mary Smile

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  • PattiB
    PattiB Member Posts: 421
    edited March 2009

    Facebook ???? - Tried to join on Facebook - it says you must be invited to join the group.  I guess I just wait until I'm confirmed.  Is that right?

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  • gymmom8
    gymmom8 Member Posts: 86
    edited March 2009

    PattiB - It looks like you were confirmed on FB. 

    MichelleinSJ/mmdj43/Sakura - can't wait to see the pics. 

    Anyone else having mouth issues?  It feels like to top of my mouth has been scraped and I am developing more sores.  Why does it have to be the one night I want to go out to dinner?  And I have a killer headache. 

    Re: skin care - I switched to dove and have noticed a great difference in my skin.  It is much softer and smoother than ever.  I hope it lasts!  I'd like to have one good thing going on.

    I hope everyone has a great SE free weekend!!

    Cyndi

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  • buddy1
    buddy1 Member Posts: 750
    edited March 2009

    I hope you can enjoy your dinner.  Try not to eat anything too hot that might burn you.  I for some reason am on a fudgesicle kick.  I tryed sugar free bananna popsicles but they didnt do it for me.

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  • JenniferK
    JenniferK Member Posts: 27
    edited March 2009
    Hi GinaGina ... my cocktail should actually be FEC x 3, T x 3  Smile
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  • didle20Diane
    didle20Diane Member Posts: 404
    edited March 2009

    Happy Friday everyone!   I hope you all have a great weekend.....

    I just got the call that my $50.00 wig has come in....errr I have to go pick it up tomorrow.   I still have no signs that the hair is going but I am on day 9 and know my days of hair are numbered :( I will post my pictures as soon as I have to shave my head with before and after.....

    Great to see so many of you on the facebook group!  Welcome to Patti our latest member!  I love everyone's photos.  Keep them coming! 

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