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07-10-2009, 05:13 AM
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#1
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Guest
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7/10 joy is in hospital 3rd time
Hi everyone. Joy had to go to the hospital yesterday via ambulance. I was trying to get her up to go for her blood transfusion and she collapsed. At the hospital we found out her hgb was 6! She was so weak and pale. They gave her two units along with other stuff. Her oncologist wants to hold off treatment until she gets her strength back. She is so thin under 100 pounds. I'm getting very scared for her. She doesn't eat much and she's not coherent a lot of the time. Any bit of advice or words ofhope would be greatly appreciated. I feel like her oncologist has given up. Thank you all very much. Jennifer
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07-10-2009, 05:41 AM
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#2
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Dear Jennifer...I was sad to read your post this morning and my heart goes out to you and to Joy for what you are enduring.
I wish I had some advice for you but I don't. I do want you to know that my prayers continue for Joy. You and Joy are in my heart so many times throughout a day.
Love and Peace,
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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07-10-2009, 06:07 AM
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#3
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Jennifer, I'm so sorry that Joy is back in the hospital. Call her onc and ask if he has given up. Tell him your fears and ask him to be perfectly clear with you what he his doing and why. It's better to know than to wonder and fear more, I think.
I'm surely praying for you both. You have been so good to Joy and to us by keeping us informed and praying. Luv to U both, 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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07-10-2009, 06:15 AM
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#4
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Senior Member
Join Date: Oct 2005
Posts: 823
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Jennifer please let Joy know that she is in my prayers. I'm so sorry that she is back in the hospital. Praying alot for her.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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07-10-2009, 07:54 AM
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#5
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Senior Member
Join Date: Feb 2006
Posts: 437
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Jennifer,
i am sorry to hear about Joy being back in the hospital. i will keep her in my prayers
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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07-10-2009, 08:04 AM
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#6
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Oh Jennifer, you must be so scared and upset. And I bet Joy is too. Has her onc said that this is definitely cancer related? Because it sounds to me as if there could be other causes. Has she had a second opinion? And I agree with Maryanne: ask the onc whether or not he has given up. If so, get another doc to check her out. I think it would be good for Joy to know where she stands. Not knowing can be more scary than knowing it's bad for certain.
I hope she feels better soon or that at least her Hgb goes up. A low Hgb like that makes one feel very weak. I had low Hgb during both pregnancies and I felt awful. Couldn't manage to have a shower without wanting to sit down on the floor and never get up again.
Hugs
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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07-10-2009, 08:21 AM
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#7
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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no advice from me. just prayers for both of you!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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07-10-2009, 08:41 AM
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#8
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Jennifer & Joy - you are both in my prayers. I am hoping that once she has a blood transfusion she will be back to her old self.
Asking God to bring comfort & peace to you.
__________________
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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07-10-2009, 08:51 AM
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#9
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Senior Member
Join Date: Sep 2005
Posts: 208
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Sending prayers right out Jennifer.
Hugs,
Diane
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07-10-2009, 09:03 AM
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#10
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Sending prayers to you and Joy today. I know you must be frightened by this latest turn of events. It is heartbreaking to see our loved one suffer. Please give her my love and wrap her in our prayers today.
Love,
Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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07-10-2009, 09:15 AM
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#11
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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I can see Joy's smiling face as I write this. She has been very important to me since I joined this board. Thank you, Jennifer, for your continued updates. I have no advice but agree that you at least might call the onc. and ask some pointed questions. Peace and love to you all, Suzan
__________________
 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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07-10-2009, 10:38 AM
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#12
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Senior Member
Join Date: May 2006
Posts: 3,142
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7/10 joy is in hospital 3rd time
I am sorry to hear Joy is in the hospital. I hope once she gets some help for her blood counts she will feel better.
Yes. By all means Joy or someone close to her if she is not able should have a serious talk with her doctors, so that they know Joy's intentions and wishes.
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07-10-2009, 10:54 AM
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#13
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Senior Member
Join Date: Sep 2006
Location: Chicago, IL
Posts: 105
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Jennifer & Joy you are both in my prayers. Much love, Lisa
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07-10-2009, 11:11 AM
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#14
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Sending my prayers for Joy and you. If she will not eat, will she drink something like ensure plus or this is not possible in her case?
Hugs,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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07-10-2009, 11:11 AM
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#15
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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keep it up!
It's so hard to know what to say. I want you to know I'll never give up on her. Amazing things happen to people all the time. We here in this group believe in miracles. There seems to be a lot of struggles going on right now for a lot of us. I think these things come in waves, but we can ride through this one together, and then we'll start to see things coming back up again. Sometimes things get worse before they get better.
I wish I could give you specific medical advise, but all I have in this case is moral support. Please keep in touch.
Celeste
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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07-10-2009, 12:01 PM
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#16
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Jennifer,
I will be praying for Joy, you, and your families. I hope she is feeling better this afternoon.
Amelia
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07-10-2009, 01:17 PM
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#17
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Senior Member
Join Date: Jun 2007
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
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Jennifer, I was hoping not to see a post like this in regards to my girl. Forgive me as I speak about Ed as I relay my feelings. Both Joy and Ed are already frail beings and this is a tough drug. It is being used for individuals that have completed rounds of the same drugs that failed or never worked for these two Angels. Ed passed out last night and although he has severe brain issues, I am unsure if this was the brain. We have already cut the dose for the 17th but we will be skipping this 4th treatment. This would be the only time he has missed a scheduled treatment.
This drug is being used seperately for Ed and he told me that it is the worst drug he ever had, again he is frail. The metal taste remains for 7-10 days, the low blood, the appetite problems. Most of the time before he ate well and just did not gain weight, he would lose it. Now Joy is so tiny, I ask if you can ask the doctor a few things. Pardon me for sounding like I know it all, I don't, but for the sake of Joy and because she is so similar to Ed......ask if these are options for her.....Magace for appetite stimulation or Marinol pills (pill form of marijuana). I do not know about Joy but is she having any problems with breathing, coughing with or w/o phlegm? Ed has been on an antibiotic in the very beginning and just recently. Now it appears that he may need another one and is wheezing now. He almost could not make it from the car to the house door today (10 feet), very weak. Just food for thought.
If you feel like the doctor is giving up on her, express that to him....challenge his feelings about Joy's situation. Doctors too can lose hope at times I am sure, it is human nature. There is always hope, Jennifer, and I know you feel sad about what is happening to these two gracious people. Do not allow yourself to lose hope because it is your greatest power as a caregiver. Hope allows us to continue to search for the answers. It helps us to be as strong as we can while we turn over ever stone. Hope brings fear to its knees, especially when miracles result. And they sometimes do. Keep trying to be as positive as you can, this is not any easy task especially when things look dire. Those thoughts of the reality of this disease must be constantly pushed aside onto the back burner. Sometimes feelings of defeat and hopelessness cloud our visions and we are unable to be steadfast and stand firm in our plight. I am not trying to be your personal cheerleader for I too face these same issues with the man I love. Look, we already know what 'could' happen with this disease BUT we 'do not' know what could occur if we get our miracle. Sometimes it is not so much a miracle as something breaking the chain and producing results. Keep searching Jennifer, ask the doctor to express his concerns and stay strong. Let him know straight up how you feel!
I am toasting to you both with a latte, I know that may seem trivial to some in the midst of what this post is about, but it was our thing. A silly but important enjoyment we both shared in life. I drink it while saying prayers and begging for a miracle for her, pleading for the chain to break. As I savor the precision in the fresh ground bean, I relate each sip, each latte as if she was right here. Bottoms up!>>Believe51
__________________
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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07-10-2009, 02:22 PM
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#18
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Marie has said it well. One other question I have is, what kind of nutritional support is Joy getting? The first priority would seem to be rebuilding her strength. You say she is unable to eat; if she is not getting any nutrition it will be difficult for her to regain enough strength to continue treatment.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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07-10-2009, 02:27 PM
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#19
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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I too love Joy's picture with her big smile.
I hope you are getting support as a caregiver. It's a difficult job. I've done it. I know that keeping weight up for treatment is really hard for many patients. In fact, I googled weight loss cancer patient and found articles, some with advice. If you haven't done that, I recommend it. All I can say is try to care for yourself and your health so you can continue to help Joy. She is blessed to have you.
__________________
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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07-10-2009, 05:17 PM
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#20
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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I am sending prayers your way for you and Joy.
I hope that the Drs. do not give up and continue
to treat her when she is strong enough and her
blood is built up. This is so sad to hear that she
is so weak. Take care and know we care.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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