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01-14-2008, 03:44 PM
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#1
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Skin Rash - Part III
Unfortunately, the skin biopies came back positive for cancer. I am devasted because I guess herceptin is not working.
I am waiting for a call from the onc to tell me the new treatment plan. I could sure use some positive stories, if you have any to share.
Thanks,
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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01-14-2008, 03:56 PM
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#2
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Senior Member
Join Date: Oct 2005
Location: Bay City, MI
Posts: 73
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I'm so sorry to hear about your results, but just remember your name "faith in him". I hope you get to talk to the onc soon, so you find out your treatment..........you'll be in my prayers, stay strong....
Sue
__________________
Sue
IDC, Stage 1, Grade 3
Oncotype Dx Score 40
Her2+++ E+P+
Lumpectomy 5/05
Re-excision 6/05
4AC
33 rounds of radiation
1 year Herceptin (had to quit after 8 months, due to low muga scores)
Faslodex until 11-07
Hysterectomy with ovaries 11-07
Arimidex 12-07 switched to Aromasin 10-09
Quit Aromasin 11-09 due to joint pain
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01-14-2008, 04:05 PM
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#3
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Dear Tonya, I have no stories to share but I was here when you posted and I want to say I feel your devastation. I am also so glad your onc persued this and did not just dismiss it. Please tell us the new plan. And keep the faith...
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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01-14-2008, 04:31 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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Tonya
I don't have a positive story but I do have a positive prayer that your new plan of treatment will be everything you need.
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01-14-2008, 04:44 PM
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#5
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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I don't have a positive story either but I am sending positive thoughts and prayers your way that your onc will have a treatment plan to bring you to NED. May God Bless you. If you can't stay strong we, your breast cancer sisters will be strong for you. Lots of Hugs, Debbie
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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01-14-2008, 04:46 PM
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#6
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Tonya, I know you're devastated right now, but don't lose faith in Herceptin just yet. Although it hasn't been enough on it's own to keep recurrence at bay, many of us Stage IV'ers have found that it just needs that extra boost of a chemo added in to knock the cancer back. I've been Stage IV since January 2001 with skin and lymph node recurrences, and my first recurrence was treated with a combo of Herceptin/Navelbine. Complete response, No Evidence of Disease (NED), and Herceptin maintenance kept me NED for 2 and 1/2 years. Then 2nd recurrence and we had to add Navelbine again, for 6 months, and again I was NED with Herceptin maintenance for almost a year. Then another recurrence, Navelbine again, but since then I've had to be on continuous maintenance chemo along with Herceptin as I continue to have systemic disease in my lymph nodes plus this past year dealing with skin recurrence again. I've only recently stopped Herceptin as my onc wanted to try Avastin with chemo, and there's no data on interaction with Herceptin so we've decided to take a "Herceptin Holiday" for now. May be able to go back to it later.
My message is that Stage IV disease can often be kept within very manageable levels with the help of Herceptin, and now Tykerb, and our options continue to grow.
Do not despair, wait to confer with your onc, but be sure and bring up the subject of Herceptin/chemo combo's as there is pleanty of data out there to support that plan of action. If Tykerb is offered, that has also worked well for some of us.
Take a deep breath, keep your chin up, and keep us posted.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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01-14-2008, 04:56 PM
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#7
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Tonya,
I am sorry this isn't the news any of us was hoping to hear. However, there are many weapons in the arsenal. I am positive that your onc will get you going on a new tx to get rid of the skin mets.
Lolly is such a terrific source for us skin met ladies. She gives me encouragement to know that these pesky mets can be fought back.
Please know that you are in my thoughts and prayers. Please pm me if you feel like talking.
Hugs and Prayers,
Lexi
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01-14-2008, 06:58 PM
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#8
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Tonya,
I am glad that you were smart enough to act on the rash and not delay.
I am so very sorry that you have received this news. But I think what Lolly said about adding a chemo to your herceptin will be your answer.
Keep your fighting spirit up and going. Love the photo of your beautiful
family....
Sending you blessings and healing energy,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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01-14-2008, 07:16 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Dear Tonya
I too am very sorry as well. If I remember correctly, the "rash" is on and near the scar. This does not mean that your chemo and herceptin are not working. Scar tissue is extremely difficult for chemo and herceptin to penetrate. Don't assume this local recurrence bodes badly for the rest of your body because it does NOT!!!
It is hard to keep the faith when things go wrong but it is a blimp in the road and scar tissue is difficult. God is great but not everyday is good. I will be praying for you.
Love,
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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01-14-2008, 08:37 PM
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#10
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Tonya, I'm sorry to hear the bad news, but it sounds like you have a really good onc., and you seem to be right on top of things, and I know you are doing the best you can in this fight. Like my bride used to say," you do the best you can from the time you get up to the time you go to bed, and that's all you can do. You've done your best, and let God take care of the rest while you sleep." Prayers and hugs,,Bill
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01-14-2008, 10:13 PM
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#11
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Senior Member
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
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TONYA,
HANG IN THERE and STAY on the Herceptin!. This is around the scar, which as Becky said the Herceptin doesn't get to well. Hopefullly they can zap this good and clear. Good for you for catching it early.
Postive thoughts to you.
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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01-15-2008, 06:40 AM
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#12
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Tonya,
Sorry to hear this news but don't despair. Lolly had very good results with Navelbien/Herceptin. Sounds like your oncologist is on top of things. Please keep us posted. You're in my prayers.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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01-15-2008, 07:27 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,747
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Yes, it does sound like your onc. is on top of things and good for you for pursuing this! Hopefully it will just be a little bump in the road!!
__________________
 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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01-15-2008, 07:47 AM
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#14
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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Tonya, I'm so sorry to hear this news. I don't have any experience to offer you , just prayers. I'm so thankful that you have a good Oncologist, a lot of them just don't keep up on things or seem to not really care. You are blessed to have a caring doctor. I'll keep you in my prayers, keep your chin up.
Hugs
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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01-15-2008, 07:52 AM
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#15
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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I just want to echo all the encouraging words and sound advice. I hope you are NED soon.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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01-15-2008, 08:05 AM
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#16
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Senior Member
Join Date: Nov 2007
Posts: 210
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talk to your doctor about genentech's trastuzumab-dm1 trial.. its herceptin plus a toxin delivered to the tumors to kill the cancer.. a few on this board are already using it.. there is a site in NC.. ask your doctor soon...
genentech is very excited about this study.. with full enrollment expected soon in both the phase one and phase 2 trials .. you need to hurry to avoid any exclusions that may occur in a pivotal phase 3..
my aunt was excluded from a pivotal p3 for pancreatic cancer because her treatment had already begun before we found a study trial for her..l
http://clinicaltrials.gov/ct2/show/N...ow_locs=Y#locn |
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01-15-2008, 11:22 AM
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#17
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Senior Member
Join Date: Apr 2006
Posts: 131
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I would also like to add more best wishes to those mentioned here...PLease keep us posted . Hang in there....
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01-15-2008, 12:22 PM
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#18
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Tonya, your news is the pitts, but the outcome will be good. I think sometimes we just need to add some chemo to the mix. Maybe it's just a reminder that we're still around and still ready to fight. I think cancer needs a slap now and then to remember who's in charge. I'm thinking good strong thoughts for you and praying for a quick "sign" that all is being fixed up. Tons of love, ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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01-15-2008, 07:28 PM
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#19
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Senior Member
Join Date: Jan 2008
Posts: 305
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I am so sorry to hear of your re-occurance, I will be praying for you.
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