Has anyone started a forum for Chemo in Dec 2008?

colleen1960

I have gotten most of my energy back.  It is 8 days since my 2nd tx.  I have been busy for the last two days helping out at my kids school.  It felt great to be so involved again.  Did get good news about my mom.  All the tests that she had to take came back neg.  YEA!!!  The onc said that the next step was up to her.  She is so AMAZING.  She is going to try the chemo and will start in Jan.  (Totally her own decision)  The onc said it will give her a better quality of life (she is 87).  She is definitely my hero, she is a fighter.  So I hope it will go well for her.  We will have to wait and see.

I have my 3rd tx on Mon. 12/22, so I am thinking Christmas day may be a little rough.  We are going to my dh family which is not far so hopefully it will not be to bad.  We will celebrate with my family on the 27th.  We rent a hall in NJ because we are such a big group.  This year with my mom being ill almost everyone is coming.  That is 9 kids + spouses, 30 grandchildren + spouses and 17 great great grandchildren.  So I am really looking forward to it.  And by the 27th I should be feeling like myself (whatever that is these days).  Wishing everyone a great weekend.

Be Well,

Colleen

Lainey64

It's day 2 from my 2nd TX and I'm feeling fine.  I think the Emend is working wonders!  I haven't had any nausea yet and I'm hoping it continues this way.  My hair is coming out in more stands today.  I was going to buzz it last night but I took an Ativan and by the time my boyfriend came home I couldn't care less about the hair!  I slept great for about 10 hrs.  I have to go get my shot this morning and I'm going to see if I can get it in my stomach.  I'll yet you know how it goes.

Colleen - that is great news about your mom!

CindaD

Goodmorning Divas, It's day 16 for me and I'm STILL obsessing about my hair, I'm driving my DH crazy!  My scalp was really weird last night, felt like someone was pulling on my ponytail, only I don't have a ponytail anymore.  I was afraid to get in the shower this morning, my hair was still there when I got out.  I just tested it while I was sitting here reading your posts and I can now pull some out, and so it has begun.  I hope it can stay in place until after work today, that way I have the weekend to prepare for Monday.  I guess I'll be wearing hats to finish up my shopping this weekend.  In my mind this is my last big hurdle in the Chemo thing, then I can just concentrate on kicking some cancer butt and healing.

Have any of you read Crazy Sexy Cancer Survivor?  And also her tips book.  Fun and informative, although I don't know if I could ever follow her raw diet or drink that green juice..... YUCK!

lisasayers

Hey CindaD...I was like you in the shower this morning!  Wondering what would be left when I was done!

Yep, read Crazy Sexy Cancer.  I login to her site weekly.  The green juice isn't too bad...although when my husband tried it he thought I was trying to kill him! ROFL  We have been playing with the juicer to see what we like and don't like!  It has been interesting!

goldie0827

Cinda, Your hair won't fall out all at once, it is a gradual thing. Some women don't even lose ALL of their hair, it just thins alot.

Bold, I love your comment about going to Hawaii in the time it takes to get chemo. I think you should go there each time! I was suppose to go to Hawaii this past Oct to get married, but this cancer thing stopped me from doing that. Oh well, I can look forward to doing that in Oct of 09.

God Bless Us All

Lori

Lainey64

I haven't taken my shower yet but like you Cinda, I'm scared to get in there.  I've been washing my hair very gently lately!  And keep checking the drain for the amount of stands in there.  Gosh I hate being so obsessive about this!  I just want it shaved off now.  If I was brave enough to do it myself I would but I'm waiting for my BF to do it tonight. 

I've taken today off from work as a medical day and I'm feeling a little guilty about it because I'm feeling so good.  The Emend is working wonders!

Goldi, I just read your post.  Thank you for your encouragement!  Maybe I won't jump the gun too quickly with shaving!

msbusdriver

Hello Divas!  My DH and I got back last night from a couple of days and a night away from home.  We had a great time.  I figured we better get some fun time in before my next treatment. on the 23rd and Christmas.  We went to Harrah's in Cherokee for some fun. (I did A LOT of handwashing!)  I can't believe they didn't feel sorry for an bald lady and let me win something!  Yes, I am almost bald now.  I found out that I can't wear a wig long either.  It is hot and itches.  I ended up wearing my little ball cap around while we were out.  I shed most of my stubble while we were there.  Every time I took a shower I could rub my head and my hands were full of little hairs.  I told DH I felt bad shedding all over our hotel room and in the casino.  He said not to worry about it and just have fun.  He was great about the hair thing.  I don't know, but I believe he might just think bald is sexy!

Sorry you new girls had to join us, but glad you found us.   We are all here for each other.  We share the good, bad and the ugly of it all, and together we will make it.

((((Hugs)))) to all!

Catrenae

Good Morning Divas!

Hi Lainey 64 & Firni, yes yesterday was day 14. It was weird how my hair started coming out "right on schedule." 

It wasn't too bad getting it shaved. I think the hairdresser had a worse time of it than I did! At first she didn't want to shave it all, but I told her it's ALL coming out anyway!! She used a "1" so I still have a little fuzz.... but you can also see the bald spots where the hair had already started falling out... It was pretty strange seeing myself with no hair.

 Oh the one thing I wished I would have done was take my camera. I looked hysterical when she shaved the sides but I still had all my spiky hair on top! Flock of Seagulls anyone?? lol My friend did take a picture with her cell phone, but those are not as good as a "real" camera.... 

 Well, got to get back to work. Happy Friday everyone!

Cat

carpediemocc

Goldie -

I'm one of the ones whose hair just thinned out. I just had my second big (3 drugs) chemo a week ago Friday. I used to have GOBS of rich full thick hair. Everytime I would brush it the brush seemed to be full of hair, but friends said it didn't look any different.

I got tired of worrying about how or when it would all just come out so I shaved my head. If I had to do it all over I would have just cut my hair really short instead. I broke out all over my head and wearing a wig is itchy and almost unbearable at this point and the little fuzz of hiar i have left actually hurts and is pokey. I'm thinking abouting waxing my head now LOL!

Bold

Oh Goldie:

I am so sorry about the postponing of your wedding. My parents have lived in Hawaii for 20 some years. I have spent much time there. I am so grateful that you are taking this time in life to heal. I think that you and you soon DH will have many wonderful years together.

Wow it seems that this is the Dec Diva Hair Loss Club this week. LOL  I will be there soon enough.

Hair today gone tomorrow.

EleanorJ

msbusdriver, don't feel bad about shedding in the hotel, at least it wasn't your house and you didn't have to clean up after Glad you had a good time.

Lainey64

I got my Nuelasta shot this morning.  Goldie, thanks for the tip.  I got the shot in my belly this time and it was 100% better.  Barely any discomfort at all.  Ladies, I recommend you all get it there. 

My hair is shedding...hehe.  I'm not going anywhere else today and going to have my boyfriend take a #1 to it tonight.  It's just on my nerves right now.  I saw the pharmacist this morning at the center and he asked how I was doing on the Emend.  I told him it was a miracle drug! 

I hope everyone's day is going ok. 

Love, Elaine

busqueen

Hi Everybody.

Just got back from my first chemo.  AC plus I'm on the clinical trial for Avastin so I got that little baggie too.  Everything went pretty good.  My port worked perfectly and I didn't have any allegeric reactions.  It was kind of weird to be in the same place that I sat with my mom when she was going through her chemo 3 years ago, but today I was in the "other" chair.  Still seems surreal.  I'm feeling a little "off," but it's hard to tell if its physical or just mental.  {I know what my friends would say.....LOL!}  In a way I feel lucky that I started a little later in the month as I have been able to see how the early December ladies have been making it through, and you are all an inspiration! 

Lisa ~~ I don't know whether to be in awe of you or scared of your superpowers.:-)

Cat ~~ Flock of Seagulls was my favorite group when I was in the 5th grade.:-)

mimiwhite

Elaine you sound well. 

busqueen I wish you a good night.

I went to my internist today and my WBC was up to 4.5 from 1.7 on Monday.  So I should get my chemo on 12/22/08.  I wanted to know what the count was before I started the (nightmare) steroid on Sunday.      Really did not want to take the steroid and then not have chemo.  That would be a major rip!  It will be interesting to see if I have folliculitis again. 

This is such a rollercoaster week for me.  The hair thing was too much!  Anyone else agree?

Hugs to you all

jajebr3

Hello my name is Alyssa and I am a 39 yr old single mother of 3 (18 14 and 3) I am going to go through the exact treatment that busqueen just described begining on Dec 30th.  So I guess that will  put me in this wonderful Dec. group of divas.  I am very scared of trying to be a mother and facing the unknown with my children and any advice anyone could give would be much appreciated.  I have stage 3 cancer, recently moved down from four thank God!  Sugeon did a lumpectomy removed 4 tumors, one an inch big, removed all my lymphnods on the left and found cancer in 10 of the 18.   I have never belonged to any type of chat room so this is all new to me but am thankful to have come across such a wonderful thing. 

havehope

Updated list:

Texas357                1-Dec        FEC+Taxotere

mimiwhite                1-Dec         4xTC

gts                          1- Dec 

meb                        1-Dec         4xAC+4XTaxol 

Colleen1960             2-Dec        CMF

mmliv                      2-Dec        4xTC

msbusdriver             2-Dec        4xTC

LindaBusEd             2-Dec        TAC 

vtmama                   2- Dec       4xTaxol+C 

shan1171                2-Dec        6xTAC 

cindyrellacleans      2-Dec        4xTC 

Brenny                    3-Dec        4xTC

zuffa                        3-Dec        6xTAC

Lindy58                    3-Dec      4xTC  

Catrenae                  4-Dec        4xAC+12xTaxol

Lainey64                  4-Dec        4xAC+4xTaxol

CindaD                     4-Dec        4xTC

BreastCancerDiva      4-Dec        4xFEC+4xTaxotere

lisasayers                 5-Dec        4xTC

simvog                      5-Dec        4xFAC+4xTaxol

cebula                      8 Dec        6xTC

sdavis                      9-Dec        6xTC

berrypatch               9-Dec        6xTC 

ptjen                       9- Dec           4xTC     

ShondaE           #2  9-Dec              AC 

Meg511                   10-Dec            6xTCH

Firni                         10-Dec           6xTC 

Lindy58                     10-Dec       1xTC+3xAC 

Colleen1960             #2 12-Dec        CMF  

ddlatt                       15-Dec            4xTC                              

horsercn                   16-Dec          4xAC+12 Taxol+Herceptin 

apfuentes                 16 Dec             4xTC 

busqueen                 16- Dec           4xAC+4xTaxol 

iktracey                    16-Dec                 4xTC 

chiquita                   16-Dec                  FEC 

Texas357                #2 16/17-Dec        FEC+Taxotere 

Kranie                      17- Dec                6xTC 

Bkokie                     17- Dec                  4xTC  

LisainVA                 #2-17 Dec              4xTCH 

Lainey64                  #2 18-Dec          4xAC+4xTaxol 

momof4stars             18-Dec?           FEC+Taxotere

ENFENETEE            19-Dec             4xTC 

mimiwhite              #2- 22 Dec            4xTC

colleen1960            #3 22-Dec             CMF 

LindaBusEd           #2 23-Dec              TAC  

mmliv                     #2 23-Dec              4xTC 

msbusdriver           #2 23-Dec               4xTC 

cindyrellacleans      #2- 23Dec               4xTC  

Brenny                 #2 - 24-Dec               4xTC 

lisasayers             #2 26-Dec                 4xTC

simvog                  #2 -29 Dec          4xFAC+4xTaxol  

cebula                   #2 - 29 Dec               6xTC 

CindaD                  #2 - 29 Dec               4xTC

Bold                        29- Dec                  6xTCH

DrDecker                 29 Dec                   4xTC

jajebr3                     30 Dec                   4xAC+4xTaxol

Firni                       #2 -30-Dec              6xTC 

berrypatch              #2 30-Dec               6xTC  

sdavis                    #2-30-Dec               6xTC

ptjen                      #2-31-Dec               4xTC

Lindy58                  #2 -31-Dec               4xTC   

havehope

Hello Divas!

jajebr3

Sorry you have to join us but welcome to our group.

Today is day 14 tx1 and I feel good. I still have my hair, no signs of coming off yet. Keeping my fingers cross maybe I am lucky and I am one of the 25% that don't loose their hair.  I am waiting for my WBC but the worst is over; nadir ended yesterday and I was able to survivor without getting sick from my daughter who just had a cold. I wish everybody a good weekend.

LindaBusEd

Good evening December divas!

What days are considered nadir? Have the family here. Cooking Christmas dinner tomorrow since Tuesday is #2. The hair is shedding (started on Day 16). Still freaking out about it. Having hard time sleeping because my hair hurts but I can't seem to buzz it. I did have a friend cut it shorter.

Have a good weekend! Linda

busqueen

Jajebr ~ welcome to our group.  Like they say, I'm sorry you had to join us, but I am glad you found us.  Will you be having 12 weeks of taxol after the AC?

ENFENETEE ~~ how did your port surgery go?  I hope you are doing fine.  I know it kinda sucks to have another 'thing' to deal with through all this, but I was so grateful for my port yesterday.  All the veins in my 'accessible' arm started to roll last week, so it was wonderful to have an alternative.  Hang in there.

Well, it's about 4:30am.  I'm physically exhausted, but the brain won't stop.  Must be the decadron thing.  I hope the rest of you are all resting well.:-)  Take care.

mimiwhite

Simvog I would be so happy for you if you were in the 25%!

Linda my scalp hurts, too.  I wish I had a silky pillow cover. 

I wore my wig over 6 hours yesterday, and had some sore spots on my scalp.  Any suggestions?  I wonder if the nylon cap would help?

Jajebr3 welcome to the board.  Drink plenty of water the day before chemo and the following days after.  The anticipation of chemo is worse than the actual process.  Also, chemo can make you constipted.  Eat your veggies, fruits, and good quality of food.  Also, when you feel like it, move your body with a nice walk.  Keep us posted.

lisasayers

Jajebr3 I'm sorry you had to join us, but you will love the women in this group!  Please ask any questions you have...we may not know all the answers, but we will try to help you find them!

 Mimiwhite...according to my daughter, who has alopecia and been wearing wigs for over a year...there isn't much you can do.  Her wigs hurt her head after wearing them all day too!  She didn't find that the nylon cap worked....all it is is like a pice of a pantyhose!  It is more for people who still have hair...to keep it out of the way. 

My daughter came home with a hat a scarf for me yesterday....I told her she shouldn't be spending money on me and she said, it will be mine eventually! LOL

Hope those of you who started this past week are getting by with few SEs!

Firni

Hi Divas.  

I am battling my insurance company now.  They are refusing to pay for my Onctotype test.  They are also refusing to pay for my reconstruction. ( it isn't medically necessary but yet they would pay for prosthesis and mast. bras.)  I know most states require ins. co. to pay but not CO.  Aren't we progressive!?  They didn't want to pay for my MRI either, but finally did.  In fact, they argued with my doctor about my diagnosis!   So far they have paid every penny of my chemo but that's probably because I've met my deductible.  I'm so bummed.  I'm not having any luck finding a job and now I'm looking at medical bills in the 10s of thousands?????  This is not good.

Also, I think one of my expanders has a slow leak in it.   It's getting mushy and slightly smaller.  My PS isn't 100% convinced it is leaking.  He said that side might be "relaxing" faster than the other side.  Anyway, I have to call him back on Tues, 12/23 to let him know if I've lost more volume.  If I have, I'll have to go in to have it replaced.  

Linda, the nadir for taxotere is days 5-9.  Cytoxin and Adriamycin are both days 10-14.  So, Your days will be from day 5 - 14.  You can find out a whole lot more about the drugs on Chemocare.com.

Mimi, I know TLC has some soft cotton wig caps.  I don't know if that would help or not.  I would think the nylon would be just as irritating as the wig itself.

Lisa, your daughter cracks me up.  That's funny she's buying her future head wear.

Welcome to the Dec. Divas, Jajebr3.   

Day 10 TX 1.  No real SEs any more.  Except my fingertips get tingly if I type too much.  Hair is still all firmly in place. (at least for the next few days)

EleanorJ

Firni, when I had the oncotype done, I received a phone call from Genomic Health. The guy was explaining to me that my ins. might not want to pay for it, in which case, they start sending them LOADS of information to prove the necessity of the test. He said they can go like this for a few months, and in the end if ins. still refuses to pay, they have financial help and if you qualify for it then Genomic Health would take care of the bill for you. I can remember the cut-out amount, I think you have to earn less than 80K? I remembered it being high enough. Call them to get more information about that. Sorry about the reconstruction though

Lisa, your daughter is funny Must be nice living with someone who understand what it's like having no hair.

Well, still have my hair but they started shedding yesterday (day 12!). My 4 years old came to me yesterday as I was pulling my hair out and putting them in the trash can and said "Mommy, what are you doing?" LOL! I looked at him and started laughing saying, well, I'm pulling my hair out! He didn't seem too upset, they have been warned about my futur hair loss, so he grabbed my hair and started pulling with me!

lisasayers

Firni I'm so sorry about all you are going through in addition to battling this beast!  I can't believe that CO doesn't have to cover reconstruction...there is a federal bill requiring it!  Dr. Christine Horner was the one who was responsible for getting that passed.  Her five year crusade -- the Breast Reconstruction Advocacy Project or BRA Project -- led to the passage of laws in thirty-five states and a federal law. The federal bill was signed into law by President Clinton on October 21, 1998.  The law was unprecedented because it was the first law Congress had ever passed requiring insurance companies to pay for a specific surgical procedure. So how does CO get away with it?????  That just ticks me off!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I highly recommend Dr. Horner's book, Waking The Warrior Goddess.  Check out her website too

http://www.drchristinehorner.com/index.html

Cebula is right about the oncotype test, Genomic Health will work with you and appeal it up to three times with your insurance company and if that doesn't work, they will work out something with you.  I just got a letter from them in the mail, but my insurance did cover that.

Yes, my daughter has made this hair thing a bit easier.  I'm shedding so bad today...so it is time for the buzz!

Hugs to all

Lisa

Lainey64

Good morning Divas.  Well, I did it.  I couldn't stand my hair anymore yesterday.  So when my boyfriend came home we set up "shop" and he buzzed me.  I wasn't too scared, just anxious to get it off because the hair was coming out faster and faster.  I was scared to look in the mirrior but he kept telling me I was sexy.  yeah right!!!  Once I looked it wasn't too bad.  I still have a little stubble shadow which I know will fall out.  I was more flabergasted by all my greys!  I always keep my hair colored so this was a bit of a surprise.  I slept with my little sleeping cap on last night and it was cozy.  I found some really nice and inexpensive sleeping caps online at www.cjhats.com.  She is a survivor and makes caps and hats to generate some income.  I am very pleased with them.

So far the Emend is still keeping the nausea at bay.  Just a little tired but I've been taking naps.

Simvog, my fingers are crossed for you!

Lisa, thanks for the tip about the wig cap.  I wondered if that would help or not.  I'm not looking forward to wearing the wigs!

Alyssa, I'm so sorry you have to join us.  Please post often and feel free to share your thoughts or ask any questions you might have.  We're all in this together. *hugs*

Brenny

Hair is shedding biiigggg time last nite and today - (first tx was Dec 3) -- wore a black sweater to see the Rockettes last nite -- big mistake for blonde hair!  I am just not touching it -- not sure what my game plan is.  I have my wig....but.....maybe maybe maybe I can make it through Monday and get back to OH Monday night with hair.....I am just not handling this well, not at all.  Oh dear!

jajebr3

busquee , yes you are right on the money 12 weeks of toxal after 8 weeks of dose dense AC.  Altough it is my understanding from my reseach nurse the toxal once a week will be easier to handle than the AC.  I love her but she has not been in my position, hope she is right.

Now on to my pressing question, I was really excited, so to speak, about going out and buying a few wigs and had a ball doing it, this was with my hair in place and they seemed comfortable enough.  Now it sounds like maybe I jumped the gun about comfort, in looking at them I think I might be miserable. Is there anything you can were under them that makes them more comfy.

 I am taking my younger son to get his hair cut this morning (which he can not stand) and am considering shaving mine while we are at the barber shop so the adjustment to mom having no hair may be easier on him and maybe he will think getting a hair cut is not so bad.  Good Idea or not divas, any suggestions are welcome.  Just plenty confused right now over the whole thing. 

Lainey64

Alyssa, I thought about shaving mine off early too but decided to just get a short cut to start off with.  It helped me to get adjusted to having shorter hair so the final "buzzing" wasn't too traumatic.  You are on the same TX as me. I am on dose dense A/C 4x followed by Taxol 4x.  I just had my 2nd TX on Thursday.  I didn't start losing my hair until day 16 after the 1st TX.  So you still have some time.  Unless you really want it all gone now, my suggestion would be to start off with a short, sassy cut and wait.

jajebr3

Lainey, that sounds great, I keep throwing all the ideas back and forth in my head, but there is so much to deal with it is hard to make a choice about something so important, yet not the most important.  I am thankful to hear I will have peoples footsteps to learn from and in turn hope i will be able to give good info to the next person in our situation.   Thank you so much for the advice. 

busqueen

Hi Alyssa.  I was told the weekly taxol would be easier to deal with as well.  I chose to do my AC every three weeks instead of every 2.  I know you can get comfy caps to wear under wigs to be more comfortable several places.  The first one that comes to mind is TLCdirect.org.  I thought about cutting my hair off already too, just because I don't particularly care for it, but there is always the possibility of being one of the lucky ones who may not lose it.  {although with our chemo, we probably will}  I think Elaine's idea is good to get a short, sassy cut, so you can still get a haircut with your son.:-)  I'm assuming you are on the the clinical trial E5103 with the Avastin.  You may have found it already, but there is a forum here for those of us going through that under the Help Me Get Through Treatment heading.  {it will say Trial E5103}

Lisa, that is a great book by Christine Horner.  I finally ordered my own copy because I had used up all my renewels at the library!:-)  I highly recommend it as well.

Happy weekend. Jingle bells and all that good stuff.