 |
06-05-2009, 05:34 PM
|
#1
|
|
Senior Member
Join Date: Sep 2006
Location: Nebraska
Posts: 154
|
Advice..20 year old with stage 4 breast cancer
Hi all, my friends' niece was just dx with stage 4 breast cancer to the spine. I am going with the family next wed. to the onc. to help them ask questions. I'm not sure what type yet, or anything, but wow, does anyone have any ideas on clinical trials? She had back pain and they found spots from the xray, ultimitly finding a 6 cm tumor in her breast. She is 1/2 caucasion 1/2 african american. Now they think her biological fathers mother died early. I'm thinking of breast cancer now. I will post next week with more info so we can help this young gal. she is my son's age. Scary as hell as isn't it? thanks everyone
__________________
Michele Ulmer
Dx.2003 Stage 3b 35 pos nodes
Dx August 2003 Stage 3B with 35/35 nodes IDC age 39
Lumpectomy
A/C x4 Taxol x12
35 radiation tx
1Year Herceptin in trial
HER2 vaccine trial Seattle
3 months Tykerb off label
NED
|
|
|
|
06-05-2009, 07:40 PM
|
#2
|
|
Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
|
Wow, Michele, it is scary, and brings tears to my eyes. But all things happen for a reason, ultimately good, whether we understand or agree with it. Thank God that you are in the place that you are, here and now, to help this girl and her family, in whatever way that you can. Please let us know how we can help, too. You all will be in my prayers. In this situation, the family will be looking to you, as much as the doctors, for answers and strength. Give them answers, and strength, and whenever you, Michele, need to replenish your strength, please come here, and we will help however we can, with answers, hugs, prayers, a good cry now and then, we will be here for you and your friends. Love, Bill
__________________
For Nicola
|
|
|
|
|
06-05-2009, 09:12 PM
|
#3
|
|
Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
|
BRCA testing may be in order Michelle...due to her age and her family history. IF she is BRCA + this would play a huge part in her treatment protocol, the options would be different.So sorry to hear this . Is she in Nebraska also? Let me know if you need some contacts in the genetics world. SOCCERMOM4FORCE at yahoo...just put her2 friend in the header
Also, www.facingourrisk.org is a great source on more information on the testing/counseling process and for finding specialists.
Marcia
Last edited by Soccermom; 06-06-2009 at 08:06 AM..
|
|
|
|
|
06-05-2009, 09:24 PM
|
#4
|
|
Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
|
I agree with Marcia, it definitely is worth looking into especially coz she is so young. Meanwhile I will keep her in my prayers.
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
|
|
|
|
|
06-06-2009, 08:04 AM
|
#5
|
|
Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
|
http://medschool.creighton.edu/medic...east/index.php
This might be helpful Michelle,this is the contact info for genetic counselors within 300 miles of Omaha
M
"
Mary Jarvis Ahrens
University of Minnesota Medica... Edina, MN
(w)
(612) 625-2134
(f)
(612) 624-6645
(e)
MAhrens2@fairview.org Shari Baldinger
Abbott-Northwestern Hospital-3... Minneapolis, MN
(w)
(612) 863-3536
(f)
(612) 863-5697
(e)
shari.baldinger@allina.com Teresa M. Castellano
Lincoln, NE
(w)
402-219-5265
(e)
tcastellano@stez.org Hope Chipman, MS
University of Nebraska Medical... Omaha, NE
(w)
402-559-2987
(f)
(402) 559-7662
(e)
hchipman@unmc.edu Debra L. Collins
University of Kansas Medical C... Kansas City, KS
(w)
(913) 588-6022
(f)
(913) 588-4060
(e)
dcollins@kumc.edu Molly Dixon
Saint Luke's Cancer Institute Kansas City, MO
(w)
(816) 932-2079
(f)
(816) 932-5394
(e)
mbdixon@saint-lukes.org Katherine Nelson Fuhrmann
Regions Hospital St Paul, MN
(w)
(651) 254-3472
(f)
(651)254-3470
(e)
katherine.a.fuhrmann@healthpartners.com Megan Hanson
Ridgeview Medical Center Waconia, MN
(w)
(952) 442-2191 x6307
(f)
(952) 442-6542
(e)
megan.hanson@ridgeviewmedical.org Cindy J.C. Johnson
Perinatal Center of Iowa Des Moines, IA
(w)
(515) 643-6888
(f)
(515) 643-6899
(e)
johncjc@hotmail.com Stephanie B. Kramer
St Luke's Health System Kansas City, MO
(w)
(816) 932-5967
(f)
(816) 932-8661
(e)
sbkramer@SAINT-LUKES.org Barbara Kunz
Hubert Humphrey Cancer Center Robbinsdale, MN
(w)
(763) 520-3813
(f)
(763) 520-5875
(e)
barb.kunz@northmemorial.com Joy Larsen Haidle
Hubert H. Humphrey Cancer Cent... Robbinsdale, MN
(w)
(763) 520-3815
(f)
(763) 520-1999
(e)
joy.larsen.haidle@northmemorial.com Lenna Mallin Levitch
Dnaxprt Consulting, Llc Overland Park, KS
(w)
(913)669-3331
(f)
(913)681-3134
(e)
dnaxprt@kc.rr.com Kara Mensink
Mayo Clinic Rochester, MN
(w)
(507) 284-2186
(f)
(507) 284-0670
(e)
mensink.kara@mayo.edu Stacey Miller
Saint Luke's Cancer Institute Kansas City, MO
(w)
816-932-2375
(f)
816-932-5394
(e)
smiller4@saint-lukes.org Susan E. Mundt
St Luke's Hospital Kansas City, MO
(w)
(816) 932-5967
(f)
(816) 932-8661
(e)
smundt@saint-lukes.org Kristin Baker Niendorf
North Memorial Medical Center Minneapolis, MN
(w)
(763) 520-4339
(f)
(763) 520-1999
(e)
kniendorf@yahoo.com Shanda S. Reinke
Abbott Northwestern Hospital Minneapolis, MN
(w)
(612) 863-9467
(f)
612-863-0233
(e)
Shanda.Reinke@allina.com Gwen M. Reiser, MS, CGC
University of Nebraska Medical... Omaha, NE
(w)
(402) 559-4161
(f)
(402) 559-7662
(e)
greiser@unmc.edu Bronson D. Riley
Southeast Nebraska Cancer Cent... Lincoln, NE
(w)
402-327-7363
(f)
402-488-5012
(e)
bronsonr@senhoc.com Quinn Philip Stein, CGC
Sioux Valley Clinic Sioux Falls, SD
(w)
(605) 333-4298
(f)
(605) 328-8801
(e)
steinq@sanfordhealth.org Brittany Thomas, MS, CGC
Mayo Clinic Laboratory Medicin... Rochester, MN
(w)
(507) 538-9163
(f)
(507) 284-0670
(e)
thomas.brittany@mayo.edu Julie Thompson
Cedar Rapids,
(h)
(319) 366-5218
(w)
(319) 369-7816
(e)
thompsja@crstlukes.com Melissa R F Truelson, GC
University of Minnesota Medica... New Hope, MN
(w)
612-624-3618
(f)
612-624-6645
(e)
mtruels1@fairview.org Julianne C. Wojciak
UCLA New Ulm, CA
(w)
(310) 825-8711
(e)
juliannewojciak@hotmail.com 
|
|
|
|
|
06-06-2009, 04:21 PM
|
#6
|
|
Senior Member
Join Date: May 2006
Posts: 3,142
|
Advice..20 year old with stage 4
Oh my goodness. I am sorry to hear about your friend's niece. I don't have any major advice except to say that some BRCA testing might be an option, but as well all know basic treatment decisions (plus her 2, ER and progesterone testing)should be made as soon as possible. Please give her a cyber hug from me.
Last edited by ElaineM; 06-06-2009 at 04:23 PM..
Reason: mistake
|
|
|
|
|
06-06-2009, 05:35 PM
|
#7
|
|
Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
|
Came across this organization at the liver symposium:
http://www.imermanangels.org/
might be able to connect her to a peer survivor. |
|
|
|
|
06-08-2009, 08:51 AM
|
#8
|
|
Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
|
no advice, just sending best wishes and prayers
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
|
|
|
|
|
06-09-2009, 04:40 AM
|
#9
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
Michele,
Hope your friend's niece has found out something about what her treatment will be. I will say a pray for her. Let us know how she is doing.
Amelia
|
|
|
|
|
06-09-2009, 07:57 AM
|
#10
|
|
Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
|
That was so sad to read...the only advice I have is to get a second opinion and I was very impressed by the list that was given to you for potential medical care to pick.
While not as young, I have a friend who they found mets in the spine after a year and half of going to the doctor for back problems and she is many years out without any recurrence.
I hope they can provide her with exactly what she needs and I will be thinking of and praying for her.
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
|
|
|
|
|
06-11-2009, 11:46 AM
|
#11
|
|
Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
|
no advice just sending alot of prayers!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 02:49 AM.
|
Linear Mode
