Starting chemo January 2009?

jas_man

Thanks for the info on the "cranial prosthesis".

I had a fitting done for a wig a week ago and they cut a long chunk from my hair. They'll try to match my hair texture and color with my wig. Makes me curious where they get human hair for wigs. Hopefully I'm not being too naive here.. but does anybody know how human hair wigs are made?

jillyG

Hi everyone, I start chemo on Jan 5th and I am getting 4 cycles of AC for my treatment (Adriamycin and Cyclophosphamide).  I had a mastectomy on left side on Nov 20th and will be getting the other side when I get the reconstruction sometime after chemo is done.

Jill

butterfly2008

Hi My Name is Aileen and I am from Ireland. I don't know where to start, I have never posted anything before so bit nervous . I am 33 yrs of age and 34 weeks pregnant . I was diagnosed in oct 08 and had right mastecomy on oct 31st 08. I am having chemo in Jan 12th 09 and am scared out of my mind. My baby will be delivered by C section on Jan 6th , 5 weeks early . I have so much going through my mind at the moment as I have an 11 month old little girl , Ailbhe to look after. I am grateful that the cancer was not in my lymph nodes but still am trying to get my head around all of this. I haven't really spoken to anyone except my husband which has been my rock but feel out of my depth and I thought something like a forum would help me come to terms with this disease and what lies ahead.

mamasarah

Welcome butterfly - 

You have a lot coming at you pretty fast.  The January Jewels are turning out to be a fabulous bunch and very supportive. We are with you.

Carol 

lisalisa

jas man, i wold told that wig hair is often from russia.  women sell their hair for money.  it can be from other places too.  looks like your hair is dark, so you are fine. but for blondes, they often end up with wigs that were dark hair and then stripped and then colored.  there is great varity of quality from what i have heard!

welcome butterfly, wow!   you have alot going on all at once and will have 2 babies to care for.  do you have help?  i'm glad you joined us and we'll support you all we can.  this place will be my lifeline thru treatment.  hugs!

merry christmas jewels!  (to all that celebrate it).  i'm sure my kids will be up at any minute!  they are 9 and 5 and so excited!!!!

Lisa

brendafromflorida

Hi Jess,  I start my chemo tomorrow.   Back Monday for the Neulasta shot.   4 rounds of AC every other week and then Taxol 5 rounds every week.   Radiation after that.   I am also in a clinical trial testing Avastin.  They are trying to determine if it is helpful in fighting recurrance and how much is enough?  If only during regular chemo treatment or extended for a full year.  There has been much success with Colon Cancer.   If I get into the arm of the study that extends treatment an additional 6 months, I will have Avastin for 6 months after my radiation is complete. 

I can't say I am ready for tomorrow, but I think I have myself prepared as much as anyone can prepare for something like this. 

It is really nice to have everyone out there who is going through the same feelings and emotions. 

Hope everyone had a wonderful holiday and I will post again tomorrow evening after my treatment.

Thanks everyone.

brendafromflorida

Welcome Butterfly,  you certainly have been hit with a real zinger.  I hope you are feeling a bit better after hearing from some of us.  We are here for you.  

We will get through this together!    HUGS!

babyc

Ladies, we are certainly a varied group--- all traveling the same road but with many of us having so much more to see to at this time.  My prayers especially go out to all you moms with children at home and/or those who are holding down jobs.  (My husband and I are both retired and we are dealing with this as our "new job.")  

I've read everything, made all kinds of notes, and revised numerous shopping lists so I guess I am ready for Monday to go visit my oncologist.  I have had a set back in my incision healing so chemo may be postponed.  My surgeon just removed a thick black scab (an eschar) and its draining so.....  It's been six weeks from my surgery (no reconstuction); is that the normal time for chemo to begin.  I would hate to postpone this.  Meanwhile, my very best wishes to all of you........... 

brendafromflorida

Well, I just got a call from the chemo center cancelling my appointment for today.  My trial drug did not come in so we cannot start.  They will call me Monday to reschedule.   Will let you know then what my schedule will be.   Bummer, I had myself all prepared.   Nothing I can do, though so I will spend the weekend enjoying myself, maybe shopping for a wig.  

Lisa, what were the side effects from the Neulasta shot?  My man is wigged out about that.  He went through chemo 25 years ago and, of course, that wasn't available then, so he is very concerned about the pain related to the shot.   It would help just to let him know how you made out. 

I hope to get started early next week.  Hugs to everyone.  

lisalisa

Hi Brenda,

sorry you were cancelled!  while there are pros/cons to being cancelled.....its so hard to be "ready" and then not be able to get it done!

you know, I was SCARED of that Neulasta shot!  for both the pain of it going in and then the side effects.  i used lidocaine/emla to numb my arm and it didn't even hurt going in.  i was a tiny bit sore/body achy yesterday....but nothing bad at all.  i am exausted though....not sleeping.....i think that is the steroids.  and, sadly, this morning, my fave breakfast cereal didn't taste normal.

but, all in all, this is going better than i expected!  happy wig shopping!  i still need to find someone to cut my hair for me!  my hairdresser is gone for the holidays.  i want someone to come to my house to do it and will send an email out today for referrals.

brendafromflorida

Thanks so much Lisa.  That makes me feel a bit better.  I have a hairdresser friend who I am going to enlist to come to my house when I am ready to chop my hair.  My oldest son lives in Providence and will be coming down in a week or two.   He has never had really short hair, but said he is going to get buzzed with me.  That will be fun. 

I suppose I will start Tuesday of next week.  Glad to hear you are not feeling too bad. 

Talk soon, Brenda

BerkeleyKim

Hi all, and hope if you celebrate Christmas you had a wonderful day! Our sun came out and we had friends and family over, so my spirits picked up.

To all new to his board, I'm sorry you're going down this road, but I hope you find support and info here as I have.

Ddlatt--thanks for the zometa info. I've heard about the jaw bone issues too. For me, I'm still going to think about it down the road, after rads if I decide to do it (recommended as I have + lymphs).

Lisa--please let me know what you hear from your nutritionist. Over the holiday a friend gave me a book--sorta the hippies' approach to b/c, and now I'm really worried about chemo. And although I'm going ahead with it, I really want to look at what to do to keep my otherwise healthy body healthy!

Brenda--I think we are on the same trial. I dedided on the Avastin trial, and had to wait til after the holidays for the drug (starting Tues--yikes). I guess we have a 30% chance of not getting it. Reading the posts here helped me decide to do it. Also the fact they will follow me pretty closely for SEs.

brendafromflorida

Hi Kim,

I was told 20% chance of getting placebo.  80% chance of getting Avastin.   Of that 80%, 40% would go on to receive the drug an additional 6 months.  

I went to the wig store this afternoon, but they were closed.  I guess I should have called first.  Oh well, since we were in Daytona Beach, we took a ride on the beach, stopped and watched the ocean for a bit before going to our favorite spot for oysters.   Much better afternoon than expected since I was supposed to start my chemo this afternoon.    I am not sure until Monday when I will start now. 

Good luck.  Let me know how you make out on Tuesday.  

amyjane

I will be starting chemo Jan 9th.  I will have 4 treatments, radiation then tamoxifen.  I ordered the throat coat, today and have been looking into wigs. My insurance company does not cover a "cranial prosthesis"  It is difficult to get information this time of year due to the holidays.  I'm so confused about the antioxidants, as I hear so much conflicting information.  Some doctors say don't take them, others suggest them.  I guess I'll do more research.

My biggest concern right now is working.  I teach first grade and would like to work as much as possible.  The students bring me so much joy and I would like to disrupt their routines as little as possible.  I guess I have to wait and see how it goes on the 9th.  

My best to you all.

amyjane

Have any of you read "The Middle Place" by Kelly Korigan. She reads a part from her book on losing her hair due to  breast cancer on youtube.  Search "Going Bald from The Middle Place" by Kelly Korigan.  I had my daughter and husband watch it too.  It is very touching yet funny.

lisalisa

I love ""The Middle Place".  A friend gave me the book after I was diagnosed.  the piece on utube is great.....but makes me cry!  though, I agree there are funny parts too.  I first found Kelly in "O" magazine.  I was diagnosed in September....all the October mags had breast cancer articles that month and Kelly had written one that I completely related to.  Maybe its because we both have 2 young kids!?!?

 Anyway, I recommend the book for sure!

Hawaii808

Hi Everyone,

This is the first discussion board that I have ever participated in.  However, the info I've been reading has been helpful and hopeful so I wanted to share my feelings also.

I will start my treatments on January 8.  I will have my port inserted on Dec. 29. I will get dxorubicin (adriamycin) and cyclophosphamide 4 x once every 2 weeks.  I will then follow with paclitaxel for 12 weeks.  I will receive the chemo on the first day and then return the next day for my Neulasta shot.  Because my tumor is large, I'm having drug therapy before surgery.  They want to shrink the tumor enough to do a lumpectomy and then follow it with radiation.  I wouldn't need chemo after that.  My BS and onc both feel that the type of cancer I have (ILC) and the pathology of my cancer cells make me an ideal candifdate for this form of therapy. 

I'm tryingto stay as positive as possible but am really nervous about starting treatment.  I'm wondering if I'm going to be so sick I won't be able to get out of bed.  I want to try to continue working thru all this if only so that I can stay active.  Glad to see that I can go thru this with so many of you.

webwriter

Hello All! I'm reasonably sure at this point, that you're my group. Yay! (Boo.)

Lumpectomy/SNB 12/15 and ALND 12/18. 1st Meeting with Onc 1/6, so it's likely that I'll be in the middle/end of this group.

My hat is off to you ladies going now. Thank you for sharing so openly and honestly, giving and taking what will get us all through it.

Thank you to the "future" women who stop by groups like this one, offering perspective and encouragment for frightened souls. 

I am utterly in awe of this board and it's members. With friends like this, I can probably handle anything. Even cancer.

Thanx for being on the journey with me ya'll.

All my Best,

Webbie

jrgolomb

Okay---I added a couple of people to the list

Webbie, you are in the right place.  It truy helps to interact with people in the same situation. 

hawaii 808---I have my port in dec 29 as well and a muga scan.

Amyjane- good luck

HUGS to all. 

Jess

BerkeleyKim

Thanks for keeping up the list, Jess. Sorry though that so many more names are added, but I'm glad we're all here for each other.

AmyJane, I'm a teacher too, and I don't know what to do! I had my mastec. on 11/12 (with emerg. surgery 11/20), and have been off since then, but have visited the kids a couple of times. I was so happy to see them, and I think they were glad I'm ok. (The third graders told me their wishes for me right before I left: "I hope they fix you," I hope you don't die") I work in 1/2/3 grades as the inclusion sped teacher. So, I'm in all 3 classes, teaching, testing, etc. I'm out of sick leave and the district screwed up on my catastrophic leave, but my onc nurse told me to see how I feel after first round before they write me a note to stop my FML time off. Your treatment will be much shorter than mine (16 weeks chem, then rad if I decide to go through with that), so that's great!  Good luck.

Hawaii808, it's hard to stay positive all the time. A friend of mine who's a nurse said that it's actually too stressful to do so, and we should all give ourselves permission to feel crappy and sad sometimes, and that tears release stress (and for me though it's sometimes hard to pull myself out of that and not show too much to my children).

Well, my wig leads haven't called me back, so I'll try for the short haircut first. Never have had really short hair. Oh wel, this too shall pass...

Kim

jrgolomb

Berkeley Kim

I am also a teacher.  I will try and teach the whole time, though the oncologist is a bit skeptical,given the level of chemo i will be treated with.   Already counting the days and trying to plan around it all.......Wish me luck and i hope the neulast works!!!!

BerkeleyKim

Jess--A friend of my sister's taught 2nd grade through her whole chemo, and did ACT and Herceptin.. She'd do chemo late Thurs, take Friday off, then teach til the next round. But, she's about 10 years younger than me (I'm 52), so maybe the enegery level was higher to begin! I've heard it's better to get chemo in the am, so I'm thinking of taking a couple days off every cycle, and on those days when I just feel too bad to get up at 6 am.

Good luck! I was told to wash hands lots, but how to keep the little ones from sneezing in your face!? And I've relied on Airborne, which I guess is a no-no now.

mimi07

Hi everyone!  I've been reading everyone's message, and finally worked up my courage to join you guys.  I am starting chemo Jan 2nd for 4 rounds of TC; I get my port in on the 29th; and I am terrified!  I had a mastectomy, but my deep anterior margin, meaning closest to the chest wall, had some insitu in it, so I would need radiation also; followed by the hormone treatment.  I'm so glad I found this site.  We will all beat this together!

Snowbird

Hi all... may I join in? Met with my GMO (Gorgeous (young, Latin) Medical Oncologist) yesterday and got the disappointing news that my Oncotype DX score was not quite good enough to avoid chemo, so I'm starting Monday (why wait!?!?!).... Had a unilateral mastectomy 2 days before Thanksgiving, and now I'm "here"...  Whoopie...  I'm not planning any recon (I'm 60, and so far adjusting well to my flatness). I'm scheduled for 4 rounds of TC, 21 days apart with each round followed by an injection of something or other to turbocharge the recovery of the white blood cells. No port, no radiation, no problem?!?!?  Happy New Year, eh?

jrgolomb

Okay January Jewels I've added

MIMI 07--Jan 2

Snowbird--Dec 29.

Let me know if I've missed anyone.

Berkeley Kim___I am 52 years as well.  Who talks about chemo is better in the morning?

I've heard lots about washing hands.  My oncologist said he has treated lots of teacher who taught the whole way through, but I am on a heavier dose, so who knows? 

Anyone heard from LisaLisa?  Hope she is okay. 

brendafromflorida

Nothing from Lisa since yesterday.  I hope she is OK too.  She said she hadn't been sleeping so well.   Maybe she is just exhausted.  

I will find out Monday when my 1st treatment will be.   I was cancelled yesterday because my test drug didn't get in.  

jrgolomb

That's got to be frustrating Brenda.  Are you on the clinical trial?  What is the drug? 

I have to have the Muga scan, did you have that? 

 I bet Lisa is sleeping.  I will definately have to......Feel bad for my 16 year old, though I have to say, she is probably glad to have good ol mom give her some privacy!!!

Hugs, all...... 

brendafromflorida

The clinical trial is for Avastin.  They are testing to determine if it will help with recurrance.  I had the Muga scan on my birthday, Dec.12.   I had just had the port inserted in my arm the day before so the Muga was no fun.  Had to stay still and hold my arm above my head.  It ached and all I wanted to do was move. 

I have been having difficulty sleeping since my dx.  I tend to nap and then that is not good because when it is time to go to bed, the sleep just doesn't come.  

How is your 16 year old handling everything?  Hope she is OK.   My boys are 38 & 43 (yes they are still boys), and they are a bit freaked, but very supportive.  They don't live near me so they are making arrangements to come to Florida and spend some quality time with MOM.  

Get some sleep.   Hugs.......

BerkeleyKim

Hi all:

Jess--I read about the am chemo in a book a friend just gave me, but I'm going to ask my onc. I'd rather do it late Thurs, then take Fri. off (if I manage to work).

The muga scan was  hard for me at first, but they let me keep my arms at my side since I couldn't lift my left arm at all 2 weeks after surgery (and am still having a hard time). I could hear my heart beat, which was nice and slow til I thought about it, then it went wild and I had to have them stop (and I needed to scratch my nose and was pinned down under the heavy rad-proof blanket). But, once they turned off the heartbeat I was fine and finished the test. Then I had an echocardio gram cuz the muga was low normal, and the echo was fine. The onc said I could just do echo for follow ups. I had to lie still longer for the PET/CT, but that went really well (no heartbeat to listen to).

 I have a 14 yr. old who has been my rock, and although she's worried, she seems able to calm ME down. It's hard, though, because mentally I'm just not as there for her as I had been for my 19 and 21 yr olds (who are home for the holidays--yeah!).

I haven't been sleeping well either, although I seem to hide in bed a lot. Tried melatonin, but Lorazepam really helps me sleep deep for 6 hours. Before this b/c I thought of myself as pretty calm, but I've been so high anxiety--can't be good...people keep reminding me to breathe deep, which helps.

Renrel

butterfly - I found this website which may be helpful if you have not already found it

www.pregnantwithcancer.org.

 I expect to join you all in January.  I was diagnosed October 1st.  It took over a month to come up with a treatment plan because I thought I wanted a lumpectomy and they needed to biospy all these other lumps to see if it was a possiblity. I finally realized that my breast tissue is so dense my breasts so lumpy that it taked the doctors hours to read my imaging.  That made me decide to go from a lumpectomy bias to a bilateral bias.  

I met with three medical surgons at three different hosptials. I really like two and went with Michele Spect at Mass General based on a recommendation from a doctor in my family who did some research for me. She was wonderful.  

I decided on immediate reconstruction with expanders with Dr. Herl, also at Mass General, she is very skilled but has a so so bedside manner, not unusal for PSs. So I had an all female team.

My surgury was November 11, veterns day and went very well, medically and cosmeticly.  They were ready to release me from the hospital after one night but I insisted on one more night.

I had three carcinomas in my left breast- 2.4 cent, grade 2, IDC, ER+,PR+, Her2- and 2 grade 1's at .5 and 1 centimeters. There was invastion of the lymphatic system in several areas but the nodes were clear in both sides. No cancer on the right side, just some atypical cells.

My oncotypeDX score was 13, 8% recurrance.

I have met with two med oncs. Dr. Nancy Lynn at Dana Farber and Dr. John Erban at Mass General. Dr. Lynn says I can either do Chemo (4x of A/C) and tax or tax and ovary suppression.  Dr. Erban thinks the oncotype is not a good predictor for me given the lymphatic invastion and my age (44) so he recommends TC, I think 4X, and tax.  

I think I am going to go with Dr.Erban as I felt he explained things better and he is at the hospital where I had my surgury and where I have been attending support programs. He is also very well regarded with two best doctor awards and other claims to fame. I also really like the nurse he works with.

I expect to start sometime in mid January, but have not yet told my doctors what I want to do as far as treatment.  

I have lots more to share but I don't want to overwell you all on my first post.  I will just add that I am a 44 year old, married (7 yrs), mother of a 5 year old boy (genius). I worked out of the home as an adminstrative law judge until going on leave just before my surgury.  We bought the house we live in one year ago and it is in the process of much work, and thus causes us much stress.  A year ago we were on the verge of doing IVF which makes the idea of going in to menapause in a month or so a bit hard to swallow on top of all the rest of this crap.  I am scared of what is coming but I try to see it as a challenge and a process of rebirth.