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TNBC, Auto Immune and Bone Marrow

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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2009 at 6:24am
Hi Laurie,
 
My dear friend, I am so sorry the meds are so hard on you.  I know A can be a nightmare for some.
 
Get your rest, your body is healing, it has been hit hard with this chemotherapy and is trying to recover and it will.  Meanwhile you are exhausted.  Drink lots of water.
 
I'm so glad you had a minute to pop in.Heart
Stage 2 2003
Stage 1 2007
BRCA 1+
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Lauriejn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauriejn Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2009 at 7:26am
You know Pam, it seems almost an odd cycle...
 
I know I need to drink a lot of water to help the A move through my body and out.  I'm trying- however here's the thing...I'm also on lasix and now an antibiotic which dehydrates (for a sinus infection)  The irony...
 
The transfusions were a success!  They were able to mix a few different steroids along w/the benadryl and I was able to tolerate.  I go for another today and hoping for the same success.
 
Does anyone have experience w/the neulasta shot not kicking in for DAYS?  My wbc count was very low yesterday however the dr. was not concerned.  I had the neulasta last saturday.
 
Here's to a beautiful spring weekend.  My heart goes out to the folks in our upper midwest facing floods.
 
Peace!  Laurie
Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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Nancy Bell View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Bell Quote  Post ReplyReply Direct Link To This Post Posted: Mar 28 2009 at 8:37am
Hi all.
Haven't been on for awhile.
Kris, I am so sorry to hear about the oc. Praying for you.
 
Interesting about the thyroid.  I developed Hashimoto's too.  Enlarged thyroid (Goiter)showed on my first PET after completing treatments.  I also have Morphea Scleroderma on my radiated breast.  It has the same symptoms as Inflammatory breast cancer.  Although my Dermatologist has not come out and said that it is from rads, I assumed this because the only place I have it is on that breast!!  Both of these are auto immune diseases. 
 
Oh yeah only .02% of breast radiation patients develop Morphea Scler. (my researching found this) .  It is treated with Taclonex, an ointment 2x per day.  It has gotten better with this but is something I will have to deal with the rest of my life.  Right now I am regretting not getting a mastectomy!!!  
Love to you all!
Nancy
dx 8/17/2007 IDC Grade 3 Stage2
lumpectomy 9/19/2007
1.2cm w/extension into multiple intramammary lymph nodes
SNL 0/1
Ki-67 81%
Dose Dense AC/T completed 2/21/08
37 rads completed 5/02/08
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Lauriejn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauriejn Quote  Post ReplyReply Direct Link To This Post Posted: Apr 01 2009 at 7:26am

Oh Nancy Bell.  That's horrible.  I'm sorry to read you are dealing w/bi-products.  Ick.  Glad to see they have a tx though.  Is it painful?

Laurie
Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 01 2009 at 7:31am
Nancy I am so sorry.  Lands who knows what some of us will have as a result of these treatments.  I wonder if that is something similar to what Netterz went thru?  Auto immune seems to pop up frequently, wonder too if that has something to do with this disease.
 
Hope the cream does it's job!
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Stage 1 2007
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Nancy Bell View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Bell Quote  Post ReplyReply Direct Link To This Post Posted: Apr 01 2009 at 2:14pm

Net & I compared notes.  It is very similar. In fact, she said that is what they first diagnosed hers as so I am somewhat sceptical.  It has all the symptoms of Inflammatory BC so. It was very painful at first but seems to be much better now.  The "arthritis" is much more painful since it is constant.  I'm not sure I buy that either.  It isn't so much joint pain as it is bone pain.  Similar to what I had during chemo. 

 
Hope you are all doing ok thru the weather.  I think about you ladies alot and I always keep you in prayer.
dx 8/17/2007 IDC Grade 3 Stage2
lumpectomy 9/19/2007
1.2cm w/extension into multiple intramammary lymph nodes
SNL 0/1
Ki-67 81%
Dose Dense AC/T completed 2/21/08
37 rads completed 5/02/08
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 01 2009 at 4:24pm
Well Nancy I would tell them it is bone pain not joint pain or did you?  Maybe a scan is in order?
Stage 2 2003
Stage 1 2007
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Lauriejn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauriejn Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2009 at 9:01am
I'm going out on Long term disability effective tomorrow- well the 90 day wait period begins tomorrow and my last day at work is today.  Not thrilled.  I wasn't prepared.  My job just sort of handed me the claim forms and said This is best.
 
Oh well, a new part of life and I'm hoping to go back to work within a few months!
 
I have the 3rd "A" treatment on Thursday and I've got so many things to discuss with the ONC.  I do believe this chemo is working and I want scans done right after the 4th tx.  I'd like to know when I can go back and have the expander removed and implant input. When do rads happen?
 
Peace all.  Laurie
Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2009 at 12:46pm
Oh Laurie I am sorry.Hug
 
Let us know about your discussion with your Onc.  I haven't had recon so no sure on the rads.  Good luck to ya dear.  It will work out ok.
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Lauriejn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauriejn Quote  Post ReplyReply Direct Link To This Post Posted: Apr 09 2009 at 5:06pm
I've tried to post something a few times...Lets try one more time.
Good news: 3rd Adriamycin down and possibly 3 more (that brings me to the limit on A due to the dose I'm on) ONC agreed its time for scans.  I'll go for bone and CT within the next few weeks.
 
Met w/surgeon today for another follow-up.  Interesting and sad to hear from him- his mother was diagnosed w/3 neg right after I was with extremely similar labs.  We talked for a good long time about my treatments and what his mom may expect.
 
We also discussed the fact that I've found another pea size spot in the other breast. Unhappy  He felt it also and I've been set up for a mammo and ultrasound.  The weird thing- the spot is in the 6:00 position- same place the other breast tumor was.  Surely hoping its nothing!  And maybe the A txs will beat it back and win.
 
Peace.  Laurie
Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 09 2009 at 6:13pm
You are right the A might beat back that pea size lump if it is positive.  I'm praying for a B-9!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2009 at 10:44am
laurie,
keeping my fingers crossed and throwing in a few prayers, too.Heart
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauriejn Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2009 at 12:37pm
Somewhere there is a thread about markers.
 
The below are the CA27-29 from my blood work...
 
January- 165; end of January- 156
End of February- 215 (end of Taxol tx which obviously was not working)
April 9- 114 (3rd Adriamycin tx)
 
Hoping to be back to normal ranges (25-35) soon.
 
Pam and Kris, thanks for the encouragement.  I'm hoping for B9 too and positive scans in a few weeks.
 
Laurie
Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2009 at 4:23pm
Laurie,
 
Connie sent this to me for you. I will also post it in the news forum. If she says it will help you....you had better believe it will.Wink
Nancy 
 
 
 
 
 
Explaining laboratory values and normal ranges
 
 
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauriejn Quote  Post ReplyReply Direct Link To This Post Posted: Apr 16 2009 at 4:26pm
Thanks Connie and Nancy!!
Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauriejn Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2009 at 10:23am
GOOD NEWS !!!
 
CT scan shows 0, zero, none, nada spread to internals however scan shows cancer is still in bones.  The bone scan next week will say more on that subject.
 
Mammo and ultrasound of left breast shows 2 b9 fluid filled cysts- nothing to worry about- see you next year stuff !!
 
Doing the snoopy happy dance.
Peace.  Laurie
Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2009 at 11:58am
 3D%20Prom%20Queen yes Dear Laurie,
 
0, zero, none, nada..is such a glorious report!!!!!!!!!! Next year is just so great hon. Doin' the happy dance with you...let's make it a group happy dance.
Love and hugs,
Nancy
 
 
 






Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2009 at 12:36pm
Congratulations, Laurie!!!!   
Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote shellieh51 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 18 2009 at 3:21pm
Lauren,
How are you doing on the disability and with your treatments?  I would love to talk with you off line about this.

Thanks.
dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 -
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Post Options Post Options   Thanks (0) Thanks(0)   Quote shellieh51 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 18 2009 at 3:22pm
Laurie,
How are you doing on the disability and with your treatments?  I would love to talk with you off line about this.

Thanks.
dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 -
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