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Old 07-14-2009, 05:52 PM   #1
micheleu
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Location: Nebraska
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update on my friend 20 yrs old with cancer

I posted earlier about my friend that has stage 4 breast cancer and she is 20. She ended up in the hospital day after first chemo. Fever and sick. She received her 2nd chemo last friday. She lost her beautiful black hair. She is 1/2 caucasian 1/2 african american. She is doing as well to be expected this week. something that is on my mind....she was hormone positive Her2 neg and it's in her bones...I know of a gal that died this week that was stage 1 node neg hormone positive Her2 neg just last year..she found out she had brain and spinal cord mets 6 days before she died. What is going on with these tumors?? They are not acting the way dr's thought they did. This 2nd gal should have had a 95% chance of making it 5 years. I asked my onc and he said that the 20 year old really interests him(as only a onc would say that!) He has not had that young of a gal get stage 4 disease. This gal that died he thought had what's called canceratmous meningitis. Like bacterial meningitis but cancer instead. I live in Nebraska and recently i have heard of alotttt of cancer.
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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

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Old 07-14-2009, 06:56 PM   #2
suzan w
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Michele, your post is indeed scary, due to the strange twists cancer can take. 20 year olds should never have to worry about this sort of stuff...it just doesn't make sense
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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!!
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Old 07-14-2009, 07:17 PM   #3
Rich66
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Did she have serum Her2 test? What chemo is she getting? Is she getting Zometa as well? There has been some studies showing timing Zoledronic acid infusions after chemo can have synergy. If she is getting both, see if she can get them in that order. I started a thread on bisphosphonates in articles:
http://her2support.org/vbulletin/showthread.php?t=39563
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Old 07-14-2009, 08:43 PM   #4
juanita
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just sending more prayers for this poor child.
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dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 07-14-2009, 09:01 PM   #5
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Michele, I do not have any advise for your friend. I can only say how sad this is and that she has been in my prayers since you first introduced her journey to us.>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 07-14-2009, 09:40 PM   #6
ElaineM
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Wink update on my friend 20 yrs old with cancer

I don't have any advice. I just want to send some positive vibes, a hug and wish her well on her journey.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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