Any May 2009 Chemo Starters?

Hi lassie11, yep.  I think we are kind of on the same plane.  Just neither one of us bought tickets!  I'll be thinking of you tomorrow.  My second round went a little faster than the first.  I think it was them knowing more of what I can tolerate now.  My se's are pretty much the same.  Oh the glories of being constipated!  Try to get a heads up on that one if you had a problem before.  The other se's are creeping on in.  Everything tastes the same and it has been about five days now and I'm scarfing as though I'm starved.  The only new thing was being so cold.!  Chin up.  You will find yourself adapting.  That's the " Marvel !!! "  in May's Marvels.  Thank you ABRose!

anj111,  thanks for asking if I'm warm now.  I also appreciate the ladies who told me they were experiencing the same thing.  Hope all of you are snuggy now.  Yes, I am guilty as charged.  I am the smoker.  ABRose, it can be " Mays Marvels + one Moron."  I am a paradox.  I'm taking chemo to stay alive but trying to kill myself while I'm at it.  What is even worse is I have megoblastic anemia which is terminal.  How's that for a conundrum?  I guess I'm rebelling by choosing my own poison.  I guess you're thinking I am crazy and you would be right, I'm certified!  I have no explanations or excuses.  I just am.  My hair started coming out in clumps on the 14th day.  I went ahead and shaved it and shave it every third day to get rid of stubble.  It hurts when I rub it the wrong way and snags on my pillowcase.  It's not sore when it's smooth.  What I find the most irritating is I have enough silver hair on my face to be a goat!  What kind of justice is that!!

You working ladies have my greatest admiration!  God bless you and I hope you continue to be strong.  Well, it seems the temperature is dropping.  I need to go find my hat!

Strength in numbers ladies.  Do have a good night and hopes for a better day.

Nancy

IHi All:

Indomitable:  I have experienced being short tempered too.  I think it is due to the steriods.  In addition to the pre-chemo steriod, I am on decadron for for three days after treatment.  It helps control the nausea, but but was I quick tempered!  I'm a teacher, and normally, I have a pretty long fuse, but for those days it wasn't a good feeling.  Good luck with your graduation party.  You'll be fine by then.

Sorry to all experiencing SE's, Hang tough.

Janet

I love the name ... May Marvels ... that's us!!!

My hair started falling out yesterday ... Day 16.  I was told that when it starts coming out, it would ALL come out, and they weren't kidding!  I'm pretty bummed about it, but I'm dealing with it ok.  I have a story that I hope will make you smile.

I have 3 year old twin girls.  I have been trying to prepare them for things that are coming, like my hair falling out.  They seems to understand and are coping quite well (they are fine with my mastectomy, they say things like 'you got little boodies like me?' and 'mommy, are you wearing your pillow boodies today?')  Last night I went into their room with a beanie on so my hair wouldn't get all over the bed, so I explained to them that my hair was falling out.  Very curious and wide-eyed they asked me:  "Mommy .... are you a LADY?"  Seems that lately I've been showing them pictures of bald women on the Internet so they would understand what I was talking about, and whenever I showed them a picture I said "see the lady?"  So, they think a Lady is a woman who is bald.  I thought that was so cute!  They are so sweet, and have made this journey a bit more bareable, especially since they are the biggest reason for the fight.

For those of you experiencing SE's, I hope you feel better soon.  I have my 2nd treatment on Friday, so I'll be right there with you soon.

Have the best day you can (this is what I'm trying to tell myself daily!!!)

Just got home from Chemo #2 which went well. They almost sent me away because my blood count was too low but since that draw was taken on Friday, they took more blood and I passed! It's a very pleasant clinic and I was much encouraged by a woman there who was on her last treatment of the same routine I am on. Then they sent me off with drugs for the side effects and drugs for the side effects of the drugs for the side effects - which is to say maybe constipation won't be an issue this time! Yay.

Good luck tomorrow, Deb - hope it's easy, or at least, no worse than last one.  Thinking of you.

Linda

katherineH- Hope your levels are coming up and you are able to get your next treatment.

Nancy- You are NOT a moron!! I smoked for 15 years and it is hard to quit. I can't even imagine having to quit while going through this! You have my support. You will quit when you are ready. I know it's hard for nonsmokers to understand, but believe me- before I quit in 1997- I lived to smoke. Literally. Life was just getting from one cigarette to the next.

CatKC- I had some constipation issues too. I'm headed to Walmart to stock up for the next round next week. I'll be ready this time!

Indomitable, Becky and Janet- My steroid emotions seem to be crying. I have been so emotional the last couple of days.

Becky- How's that new grandbaby?

mom2twins- What a cute story! You are so blessed to have your little girls!

Geri- Glad to hear the SE have been minimal for you! Aren't you the cold cap lady? How is that working?

Leslie- I hope all is well after chemo #2!  Wouldn't it be great to be at the end?! I can't even SEE the end! But it's out there. Someday!!

Deb- Sorry about the hair. Good luck tomorrow!

Linda- We are all thinking about you too!!

jabl1252- I hope you are feeling ok tonight too and in the days ahead! Big hugs to you too!

Susie- Thanks for the friend add on Facebook! If anybody else wants to be friends, send me a PM here and let me know your name or I can let you know mine.

Shelley- I know you are out there! Thinking of you and wishing you well!

Sorry for anybody I missed. I didn't go back past this page. Today has been a rough day for me. Day 7 and my worst nausea yet. I thought it would be gone by now. Bad night of sleep too. I got my two other wigs in the mail today. I don't think I like one of them, so I might send it back. Still trying to decide.

I also got my first letter from my Chemo Angel and I cried when I read it. I heard about it here at BCO. They pair you up with angels who send you encouraging letters. Very nice! I wasn't expecting to be so emotional about it, but knowing that a complete stranger was thinking of me and praying for me....well, I just lost it when I read her note. I am going to enjoy her letters very much.

I hope and pray we all have good days tomorrow! I'm planning on some retail therapy. Hope I feel well enough to go! Love and hugs to all!

Mary

I buzzed my hair tonight, too!  Well, I didn't do it, my best friend did it.  We had a little bit of a cry, but it's ok.  Glad you got through it ok, too, Deb!

Hello All!!  I'm new to this posting but very excited!  I started TCH on 5/14 and have my second treatment this Thursday 6/4.  After my first treatment my 8 year old son said, "so mom, how did your first chemo treatment go", I said "it went good, I didn't even get sick".  He said, "well that's good, so when are you going to loose your hair"?  LOL...  So, my hair finally starting falling out last week probably around day 12 or 13.  So I cut it really short last week to prepare myself, well kind of prepare myself, for no hair.  Now today, my hair is really falling out!!!!  I told my husband let's just get the vacum and suck it all out....LOL!!! 

 Any suggestions on what to do when your hair really starts to fall out???  My scalp is very sensitive and very soar when I move my hair from one side to the other.

 Thanks for starting this group and I look forward to hearing from everyone and getting to know everyone!!!

 Good luck to everyone else going for their next treatment!!! 

Welcome to the newbies.. 

I am still full of the flu, just can't beat it. It is a very cold winter here in NZ.   But I am feeling Ok, thankfully, and still able to function fully. Still working even though I am clogged up.  I have had no SE this week, back to normal routine, taste buds are normal, not tired, been able to actually watch Tv with my family and not sleep thru the movies.  The third week was definitely better than the 1st and 2nd. 

I have to go for my bloods tomorrow.  As my next treatment (session 2 ) is the day after.  So hope I am well enough for the oncologist. Then the whole cycle starts again at least i know what to expect now.  The hardest for me is the cardboard taste of everything, and I am not looking forward to it, but at least I now know it does go away.    

My head is nearly bald now, I have noticed the pain in the folicles as it comes out.  I don't know how to alleviate it though.  I had a bath last night and that definitely was soothing, but wasn't nice when I noticed I was bathing in my own hair (thank goodness I had the number 1 haircut  last sunday so it was short.)  I know it is hard when you lose your hair to some of you.  It didn't really bother me, of course I would prefer to have all my own hair, but the alternative is losing my hair and never having cancer again.  I am willing to sacrifice my hair cause I know it will grow back after all of this is over.  I wear my wig when ever I go out in public, and noone suspects a wig.  I tend to wear hats and chemo turbans at home, only cause they not as tight fitting as my wig. 

 I love our name!!!! May Marvels rocks..... and I think of you all often.......  especially those of you seeing the brunt end of treatment.  Try and stay positive about everything (I know it is hard) we can do this......Big huggles........

Kia Kaha (Be strong)

deb6563-Good luck today, I am jealous that you survived the buzz, mine is very soon also!

TexasRose-Sorry you have having a bad day, hope you can sleep soon.

mom2twins-You are also ahead of me in buzzing, I am expecting by the end of this week to have to do that also.

Jodi_Smart-Welcome, you will learn a lot here!

zuzeee-Thanks for the encouragement about having a good day!

Titch-So sorry you are still not feeling well!

I woke up today with the start of a cold, sore throat, I am going for my 2nd chemo treatment tomorrow. Has anyone had a cold for treatment, did it lower your blood counts at all???

TItch-yes, thanks again for compiling the list. Hope you feel better soon!

ABRose, Janet, TxRose, Becky- I've not been quite as touchy/impatient since stopping the steroids the other day. Luvtheocean-you hit the nail on the head...that's how I felt! Weird thing is I didn't have any problem sleeping although it wasn't restful.

Mom2twins-how cute. I hope to be a lady one day. My 8 yo son is like Jodi Smart's-he's eager to see what I'll look like w/o hair. He didn't like my current natural hairstyle until 6 months ago. So when he said don't cut it, I thought he meant keep it...but no, he'd rather watch it fall out....

I actually go for a buzz/shave today and get my wig styled. Go back to work tomorrow so I won't have much time to play with it and get used to it. Hope I don't pull it off as as I'm a hands in my hair kinda girl when doing deep thinking..........
But haven't been able to get to think too deeply recently...Why do I feel slightly inebriated??? Is this the chemo brain to which others refer? I'm in trouble.

CatKC-I've been taking SennakotPlus since the day before chemo but I apparently had an experience similar to yours....... Was afraid to be too aggressive because who wants diarrhea?

Kelly2-so glad you're having a better week! You, too, Zuzee! I'll keep hope alive.

Has anyone else noticed facial skin peeling?  I'm on TAC...looks like I'm peeling after sunburn. Can I get the wig to cover my face? that way, won't have to worry about brows, lashes or skin!

Prayers & Hugs!

Thanks for all the welcomes! 

 Titch - Thanks for making that list....that's awesome!  I hope you are feeling better soon!

Becky - Thanks for the advise on the buzz....I might do that, but I'm so scared.  I don't even have a scarf or wig yet.  I'm really not ready to face hair loss yet.  But I would so much have this than the alternative.  People keep telling me don't pull at it, that way you'll have it longer!  My mom is driving me nuts with the whole wig thing.  Everyone is convinced I should get a wig.  Personally I don't know if I want to spend the money on it, that I don't have in the first place, and it's going to be getting hot here in Sacramento for the summer!  I'm thinking of just going bald and leaving it at that!  I just really scared too I guess, because no one has encouraged me to yet, except for my son.  My 5 year old daughter I think is scared to and the joke around here is my 6 month old daughter is going to have more hair than me....LOL!!! 

Also, what's the deal with the neulasta shot?  When are you supposed to get that?  Has anyone gotten that yet and how did it go?

 Thanks again and love to all!!!

 Jodi

Hi Jodi all May Marvels

Welcome. Just to let you know that I will only be given the N shot as a last resort. Not standard practice to give it here so obviously varies according to where you are in the world. I understand that it is a very expensive drug and helps to rebuild the immune system. I am wide awake and it is 2.45 am down under!!!! Enjoy the sunshine. Susie 

This is just an update on the hair situation with using the cold caps.  I am day 29 out from my first treatment and day 7 out from 2nd treatment, and although my hair has thinned, I do not have any bald spots or clumping and my scalp has not been tingling, painful or itching.  I did cut about 10 inches off a few days ago just to make it easier to manage.  The inventor of the Penguin Cold Cap, Frank Fronda, is very supportive.

Hi All,

I had my chemo #1 yesterday and all went well. no unpleasant surprises re alergic reactions or anything, and the chemo suite has moved out of the dingy basement into a new wing of the hosp- beautiful big windows, more space and light. A much more conducive atmosphere. I went and picked up a bunch of bedding plants for the garden on the way home which I intend to supervise my husband in planting out over the next few days. So happy that Spring has finally arrived here in Winnipeg.

To those of you going bald right now I have a silly story. When my hair came out last year my (then 5 1/2 yr old) son had a friend over for a playdate. They decided it would be fun to decorate my head with face paints as one of their activities, so they filled my bald head with spirals and stripes and rainbows and then took photos of their work. Looking  at the photos after, I felt such a sense of strength and power for two reasons, one; I felt like some kind of tribal warrior adorned for battle, and two; I had allowed my child to experience the changes that were going on for us in a playful way.

I often went bald during that year around the house and with friends, but needed a hat to go out as it was winter (-25 up here in Wpg!) I didn't mind  losing my hair as much as my eyelashes- that really was a bummer. I will wear scarves this time as I don't want my head to burn (skin is very sensitive during chemo and after), but I have an appt for a "fun" wig next week.

I am loving reading all your stories, take care (I'm off to bed to nurse my aching limbs right now0

Cat