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Shaving my head tonight ...

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    Posted: Oct 07 2011 at 3:36pm
Hi my friends,

Well I'm at that point again, you know where you can just touch your head and your hair falls off?  I have an appointment with my hairdresser at 6:30 to do the deed.  She did it for me 4 years ago when I first did chemo and she made me feel very comfortable.  Losing your hair is just another thing this dreaded disease takes away.  I had great hair.   It took me to age 40 to learn to love my curls and work with them so they looked amazing.  You may think me shallow but after going through this for so long and not wanting to share it with the whole world it's really upsetting.  After all, I will probably have to be on some kind of maintenance chemo for the rest of my time so it probably won't grow back.  My friends little girl (who calls me Auntie Boing Boing) because she like to pull on my curls and have them bounce back may freak out a little - she's only 2.

Anyway, I've pulled out the old wigs and they still look good.  Glad the weather is changing and still grateful to be here, hair or not.  Just needed to have my little pity party.

I hope everyone is doing the best they can today with as little pain as possible.  You guys are my lifeline.

Love,

Caryn
DX 11/07 age 49, Stg 1, Gr 3, 1.1 cm, lump, 0/1 nodes, BRCA-,TC x 4, 37 rads, 2/08, 1/09,recur to axilla nodes 5/10 recur in mediastinal node,stage iv, 09/10 carbo/gem/parp, 2/11 NED, 3/11 stg iv IBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2011 at 4:13pm
Caryn,
You have been and will continue to be in my prayers.  You have shown such phenomenal courage.  You are an inspiration--I could never, ever think of you as shallow.  I wish you many, many happy days to come.
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote janet c. Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2011 at 4:58pm
Caryn,
Losing your hair is a very traumatic thing. You have every right to feel the way you do. Sometimes a good rant or cry just makes you feel better. Don't let anyone minimize your feelings. We love you here and are always praying for you and your son. I hope you feel better soon.
Janet

Edited by janet c. - Oct 07 2011 at 5:04pm
dx 12/08 @47yrs.old TNBC stage 2a grade 3, 2.1cm. partial mastectomy sentinal node negative BRACA negative Cytocan/Taxatere x4 radiation 36 or 38rounds
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2011 at 5:46pm
Caryn:
I ditto all the messages being sent to you!  It is so hard to loose hair the first time and to have to do it again, well that just sucks....Thank God for wigs, nice scarves, and winter hats! Be well with yourself and know that prayers are being sent out for you all the time.  As you said "I am just glad to be here", and we are glad you are too! Big hugs to you, h.
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2011 at 7:06pm
Oh, Caryn, I so know what you are feeling and I hate that you have to go through all this again.  I think losing one's hair is the worst part, as seeing yourself cue-ball bald is just so blatantly screaming "cancer."  That is how I felt the entire time I was bald.  You are not being shallow at all, it's a totally natural way to feel.  Although we all have to "accept" it as a part of staying alive, we all realize that it's really a small price to pay to be able to continue living, but an ugly painful side-effect nonetheless. 
 
You are such an inspiration to all of us and such a totally amazing woman.  I wish and pray for you nothing short of complete success.
 
Love,
Linda
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2011 at 7:08pm
Caryn,

I know what it feels like to not want curls to leave.  I had very straight hair before chemo and now it is wavy after chemo.  Thanks for sharing with us and your good wishes.  I am always happy to hear from you and will keep hoping for many more e-chats to come.  

Love and Peace, 
Sue
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.          
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2011 at 8:35pm
Caryn, You are a braver woman than I!  I am (for the 2nd time as well) hanging on to the few strands I have left! It was just growing in soft and curly and was about 3/4" long and now all I have left is some thin grey, coarse stuff. It is so thin you can definitely see all of my scalp through it, but when I have a cap on at least it appears I have hair as a little sticks out the bottom.
I did see a picture at our local Susan Komen center of a woman who "blinged" her head out for an event - sequins, glitter, and all!
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tninalabama Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2011 at 8:39pm
Caryn, 

I know how you feel and no one who knows will think you'e shallow. I left half my hair in the Smokies this time. I couldn't wait to get home to shave it. It's now about a half inch long and has been for two months. Abraxane keeps fighting with my head. I can pull out strands. It's so frustrating! I wish you much love and luck!!!

Pam
Dx 11/07,stII bgr3,1/8+, metaplastic, recurrence 11/09, lymph dis 12/13+ 07/10, rad,x28 9/10,02/11 mets

BRCA neg
5-FMC since 03/12
PET 04/12,no progression
Bone scan clear 06/12
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Post Options Post Options   Thanks (0) Thanks(0)   Quote suec Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2011 at 10:06pm
dear caryn,
i'll be joining you in about two more or fewer carbo/abraxane sessions; just started first round today.  it'll be my third time.  but i'm betting that cute two year old will just be fascinated with your new head feel.  my little great nephew still recalls the first time i lost mine.  he thought it was just too funny and he was about two then.    of course, i never had bouncing curls! wishing us all nausea free days; to heck with the hair.  suec
tnbc 3b: partial mas 5/06; 6 rounds FEC; 36 rad; 05/09-mets to bone; xeloda, avastin, zometa; gemzar & avastin; rads to hips; 8 mo on methotrexate+5fu; 5/11 mets to liver/lung; halevan fails;carb&Abrx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2011 at 10:44pm
Dear Caryn,

I think I gave you a copy of Turning Heads by my friend, Jackson Hunsicker, but I don’t remember for sure. If I didn’t please let me know and I will send you a copy. I have been at MD Anderson all week but I will be back in California tomorrow and I will get a copy to you..


You have been, are and shall be in my prayers.

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zacar Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2011 at 12:13am
Hi Steve,

I was thinking about you today and was going to call to say hi and see how the baby was doing.

You did not give me a copy but I did get one at WeSpark a couple of years ago.  Really great photos.  Unfortunately, it didn't make it any easier.  Actually when I put on my wig I looked better than before I shaved it.  My wig is a beautiful auburn and straight and smooth.  Doesn't look like a wig and actually makes me look younger!  It's when I take it off and have to look at myself in the mirror that freaks me out a little.

Anyway, I'd love to talk with you - when is a good time for you?  I assume tomorrow you will be worn out from the travel so feel free to call me too when you feel up to it.  I'd like to run a couple of things by you and I could use your sage advice.

I appreciate you keeping me in your prayers.  You are such a good man and you help so many of us.  Truly there should be an award for what you do.

So are you still living back east? Looking forward to speaking with you.

Hugs,

Caryn
DX 11/07 age 49, Stg 1, Gr 3, 1.1 cm, lump, 0/1 nodes, BRCA-,TC x 4, 37 rads, 2/08, 1/09,recur to axilla nodes 5/10 recur in mediastinal node,stage iv, 09/10 carbo/gem/parp, 2/11 NED, 3/11 stg iv IBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2011 at 6:01pm
Caryn,
God bless you,you are in my prayers.
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sstefano Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2011 at 7:51pm

Caryn,

 

I just lost my hair last week on taxol. I did not shave it because the doctor told me that it could take some time. Well, it took me only 5 days to lose it but those 5 days were very hard for me.

 

Very few people know about my cancer and I so don’t want all the world to know. I went on disability and pretty much stopped going out since I lost the hair. I know - very vain and shallow. I do have wigs that make me look better but different.

 

I know I should concentrate on the liver and stop being upset. I am so glad that here you will understand how horrible is to lose the hair and now knowing if it will ever grow back.

 

Love!

 

DX 04/97@32 stg 3 ACx4; DX 06/06@41 stg 2 Xeloda x6; 10/10@46 mets carboplatin x10, 07/11 - Xeloda; BRCA1 positive 5382insC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LauraT Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2011 at 11:20am
Caryn - I went through the same thing this summer. My hair had finally started looking like "me" again after losing it at the end of 2009. When I started the weekly taxol, my doc and the nurses said most people don't lose all their hair, it just thins out. Wrongo! I hung on to it as long as possible, but then I started feeling like I looked like that creepy guy from Lord of the Rings. Shaved it all off and cried all over again. Now, unbelievably, even while on chemo, it has grown back to about 1/2 inch all over. So, I ditched the hats and wig.

I think of you often and pray that this treatment works wonders for you.

Love,
Laura
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2011 at 1:15pm
Laura, I don't even know who the creepy guy from Lord of the Rings is (never saw it), but that's who I look like right now!!  But I just can't make myself cut off the 100 hairs or so I have left on my head. Maybe in a week or two and then I'll pray mine grows back on chemo as well!
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debris Quote  Post ReplyReply Direct Link To This Post Posted: Oct 13 2011 at 10:31pm
Hi Caryn, I've tried to send you a PM but your inbox is full. I want to share some info with you re visiting Dr C at Fox. Let me know a good time to call you, in your evening?

I had to cut my hair off a few weeks back, too. After the first time, my hair came back snow white. Folks said it looked nice, and while it was very short, I grew to quite like it. But now it's off again, and I didn't want to go back to the brown/auburn wigs I used before. So I ordered a couple of short white ones from TLC. Not sure it is 'me', though. will have to give it time.

Hope to speak with you soon.

Take care.

Deborah.
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
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06/08 Dx DCIS 0/SN Rads/AIs
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Post Options Post Options   Thanks (0) Thanks(0)   Quote conniec Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2011 at 10:06pm
Praying for you.  

Age 40,
Felt lump 8/20/10
Lumpectomy 9/7
DX 1.5 tumor stg I 9/13 margin not clear
Double MX w/ expanders 10/8
Final tumor size 1.7, 0/3 + nodes
AC-T chemo 11/8 - 2/21
TE/implant exchange 3/29

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Post Options Post Options   Thanks (0) Thanks(0)   Quote zacar Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2011 at 4:44am
Hi Deborah,

I cleared out my PM.  I've been waiting for your call so please call when you can remembering I'm on PST.  I am a late sleeper since I'm up and down during the night so the afternoon is a good time.  I'm looking forward to talking with you.

Hugs,

Caryn
DX 11/07 age 49, Stg 1, Gr 3, 1.1 cm, lump, 0/1 nodes, BRCA-,TC x 4, 37 rads, 2/08, 1/09,recur to axilla nodes 5/10 recur in mediastinal node,stage iv, 09/10 carbo/gem/parp, 2/11 NED, 3/11 stg iv IBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2011 at 11:51am
Caryn,

I've been thinking about you.  How are you handling the treatment?

Hugs,
Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote zacar Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2011 at 2:17pm
Hi Donna,

Thanks for thinking of me.  I am doing ok.  It's the day after chemo where I start to get a little squeemish and tomorrow is worse (I'm actually going to Palm Springs to see my parents tomorrow - Zac is driving).  I figure I can crash all day on the couch.  I know it makes my mom feel good to see me since she can't drive from PS to LA.  We'll know more in a few weeks.  Doc wants to do 2 more abraxane treatments and then scans.  I will take care of the brain mets then too.  It's this dang blood clot in my stomach that is causing me a lot of pain which means more morphine.  I do an awful lot by IV at home which helps but in 3 hours it's effects are gone.

I've been talking with Constance from Breast Watch (he helped me back in '08 as well) and he is offering very viable suggestions.  My doc isn't very well versed in bc or tnbc or ibc.  I've been to all the "names" and there have been some serious screw ups so I figure I would go to a nice compasionate person who would let me make the decisions and he does.  So depending on what the scans show we may add Zeloda.  Everything is low dose.  My QOL is more important than anything else right now.

How are you doing?

Love,

Caryn
DX 11/07 age 49, Stg 1, Gr 3, 1.1 cm, lump, 0/1 nodes, BRCA-,TC x 4, 37 rads, 2/08, 1/09,recur to axilla nodes 5/10 recur in mediastinal node,stage iv, 09/10 carbo/gem/parp, 2/11 NED, 3/11 stg iv IBC
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