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09-22-2009, 11:34 AM
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#1
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Cancer is back...I just knew it.
My onc just called me...I knew it wasn't good news. She wanted me to come in but I told her I wanted the NEWS NOW. I have recurrance in the right axilla area which was the breast cancer side. Recurrance in chest wall...not sure how extensive?
Also in the right femur and ilium. I've been concerned about the pain in my right hip...I even told her that leg and ankle has been swelling and causing pain. She wants me to come in today and talk about it. She said I should go to City of Hope or UCLA for a 2nd opinion. Said there are some clinical trials. I told her I would CERTAINLY be getting a 2nd opinion if not a 3rd opinion since the 1st time around with the first onc he told me I was doing TCH and I had NO say in my treatment...his exact words. She acts like its no big deal and said I'll get through this. Easy for her to say.
I can't have rads to chest because of my lung problems...so we can't zap axilla or chest wall. I am so scared right now. With my scoliosis and compromised lungs I'm not sure if I stand a chance. My husband is always home but today he made plans to help a friend move some things. He hears me talking to my onc and I tell him MY bad news & he asked if I had an appt today. I told him yes. Then he says he will leave his cell on and to call him if I need anything. (Gee thanks.) He could of stayed with me and went to my appt...but no...I can see what's more important...its obviously not me.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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09-22-2009, 11:56 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: Cancer is back...I just knew it.
Chelee, most of all I am sorry you are so right. You are looking at it very honestly and even though it isn't good news and you don't want to have to do it at all, that is still a big plus for you.
Others know more than I do in many ways scientifically, but my sense of it very, very honestly is that the fear of the unknown makes the unknown a bigger shadow and a lot closer than it actually is likely to be for you.
The biggest challenge I see is, can you make the move to better care providers, or not? Is the gamble of staying with this outfit you are with worth it to you? I hope you can find a reasonable alternative as you work your way through all this.
Much love,
AlaskaAngel
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09-22-2009, 12:07 PM
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#3
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Member
Join Date: Apr 2007
Posts: 12
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Re: Cancer is back...I just knew it.
Chelee,
I am so sorry you have to go through this. You are in my prayer.
joyluck
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09-22-2009, 12:10 PM
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#4
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Re: Cancer is back...I just knew it.
Chelee,
Dr. Joanne Mortimer at the City of Hope is wel qualified to ofer you a second opinion. I might also highly recommend Dr.John Link from Oange county.
Also, Cybeknife can provide extremely accurate targted radiation.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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09-22-2009, 12:17 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: Cancer is back...I just knew it.
Chelee,
John Link was someone who stepped up and wrote several books that talk about breast cancer diagnosis and how to deal with it from the standpoint of how things are, not just how they should be. I've never known anyone who went to him, but I thought his books were more on target in that respect.
A.A.
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09-22-2009, 12:30 PM
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#6
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Cancer is back...I just knew it.
I'm so sorry Chelee. Sending you love, hugs and prayers.
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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09-22-2009, 12:36 PM
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#7
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: Cancer is back...I just knew it.
Sending my prayers and thoughts that you will
find the Dr. right for you and the treatment.
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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09-22-2009, 12:38 PM
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#8
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Cancer is back...I just knew it.
Joe, Thank you for the referral. I've been to the City of Hope (COH) before & did see one of there onc...but breast cancer was not their speciality. I've heard of Dr. Link and actually know of someone that was very happy with him.
Last time I called UCLA they said Dr. Slamon was not seeing HMO patients...I am now wondering if that's true? I think I'd like to go that way if possible. Since I'm Her2 I would really like a 2nd opinion with him. (I plan on getting two if not three this time around.) My cancer place played on my fears the first time and I didn't get a 2nd opinion. That will not happen again!
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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09-22-2009, 12:51 PM
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#9
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Senior Member
Join Date: Aug 2006
Posts: 492
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Re: Cancer is back...I just knew it.
I am in shock Chelee, friggin' crap!!!
Hoping you can find a compassionate and skilled oncologist to help you kick this cancer to the curb.
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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09-22-2009, 12:56 PM
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#10
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Re: Cancer is back...I just knew it.
Chelee,
I am so sorry and angry for you. Please know that you are in my thoughts, and I wish you best of luck in finding a caring onc and the tx you deserve.
Hopeful
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09-22-2009, 12:56 PM
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#11
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Cancer is back...I just knew it.
AlaskaAngel, You are so right when it comes to the fear of the unknown. I feel sick right now...and it doesn't help that my husband left me here alone to deal with this.
He did say he would take me where ever I needed to go. When treatment starts its like living at the cancer center...so if I change I need to find one that is within reasonable driving distance. I'm just so over whelmed right now and can't even think straight...I don't know what I'm going to do. I'm still so angry at my oncologist. The minute my TM'ers started to go up exactly on 7-22-08...which was 4 months after completing Herceptin...I mentioned several problems I was having just to be blow off. I begged to stay on Herceptin and I almost can't help but wonder had I got to stay on it if it wouldn't of keep the cancer away? (I guess I'll never know.) I see my onc today at 2:30 and then I'll find out how much chest wall & axilla involvement? That's what I'm really worried about...I only have 30% use of right lung and 40% of my left as it is.
I will be demanding a brain MRI to be done asap also! I've had really bad headaches and have been on the clumsy side which is not like me. I am beyond stressed.
Thanks Alaska for your kind comments.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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09-22-2009, 12:57 PM
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#12
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Re: Cancer is back...I just knew it.
Dear Chelee,
I am so sorry to hear your news. I am hoping once you see your onc today and talk you will get some direction. This website will help you through, it is already with Joe's suggestions and others.
Maybe your husband also needs some time to settle in with the news. If he was supportive before I am sure he will be there for you again. Give him some time. In the meantime remember we are here. Let us know what you found out today and your future plans.
Many prayers are coming your way.
Love,
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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09-22-2009, 01:06 PM
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#13
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Cancer is back...I just knew it.
Donna, My husband helped me alot through my first fight...but he was pretty angry the entire time...made it hard on me. He knows how important it is for me to have a 2nd set of ears today at this appt of all the times. There's alot to take in today and I'm not sure I'll catch it all since I'm so stressed out. I can't believe he decided to move a TV for a friend over going with me. I'm sure if he told his friend my cancer was back this guy would of said you need to be with your wife...this is unbelieveable. They could of moved his tv any time...it wasn't that important...obviously I'm not either. (Sorry...I'm just venting since I have no one else.)
Thanks for the prayers...I need all of them I can get.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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09-22-2009, 01:17 PM
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#14
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: Cancer is back...I just knew it.
Dear Chelee, I understand how upset you must be. You are right to look for 2 or 3 opinions. I changed oncs twice before finding one I trust and more important, one I could discuss my treatment with. I also understand how bad you feel about your husband's reaction. Maybe it is a way to protect himself but you should tell him how you felt about it. Nicely, but clearly. You have enough to carry. I hope you will quickly find another onc who will give you a good treatment. I am sure there are plenty of options to try the first one being to go back to H;
I send you love and courage.
Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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09-22-2009, 01:36 PM
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#15
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: Cancer is back...I just knew it.
Dear Chelee, I am so sorry to read about this. It just sucks. I too hope that you find the right doc that "listens".
Take Care and God Bless.
__________________
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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09-22-2009, 01:38 PM
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#16
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Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
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Re: Cancer is back...I just knew it.
You need to stop questioning yourself. And I agree in the second opinion.!!!!
Also, I think, if I were you I would explore doing some holistic avenues along with the course of "whatever" the doctors ask you to do.... I am doing a combined approach of chemo/herception and then diet and a huge change in how my body can handle and heal itself. The catch is I have changed the pH in my body - and cancer can not survive, (grow or even stay active) in a body with a neutral pH. So.... the approach is change the pH in our bodies and live.... heal ourselves. It really is that easy.
If you want another approach - please email me for more info (I have a TON) at my personal email.
wheelistic@yahoo.com
I am thinking really good thoughts for you and believe that you will get some answers from your doc and also a 2nd opionion --- that will be a good start!
Hope this helps --- Karen
__________________
Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!
7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!
2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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09-22-2009, 01:46 PM
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#17
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Senior Member
Join Date: Sep 2005
Posts: 556
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Re: Cancer is back...I just knew it.
Cheele,
I am sorry to hear the news. I know its not the news we wanted to hear. I was so panicked and depressed when I heard about my recurrence and I wanted to start chemo immediatly and started Navelbine and Herceptin. BTW I got two years of Herceptin and as soon as I stopped Herceptin I got my recurrence.
My advice to you is to consider just starting the Herceptin without chemo first and see how your tumor is responding to it. This way your body will have more strength to fight the disease. You can always start chemo if just Herceptin doesn't work. I didn't do this because I was so panicked and I wanted to get rid of the tumor fast.
Please concentrate on your health leaving aside all other problems. Hope you will get through this and never need to face it again.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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09-22-2009, 02:10 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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Re: Cancer is back...I just knew it.
Chelee, sometimes good people can't deal with cancer. But the gang here can deal with it and give you support and advice. I hate that you were so right about the symptoms. But the good side is that you are strong, smart and determined. Today is a bad day. You have a right to be angry, sad, confused, and scared spitless!
But you are strong, Chelee. And your wisdom will walk you through the things to come. The one thing that I think is very important is to find someone you trust and admire to work with to fight this battle one treatment at a time.
Don't lose hope. I'm praying for you and cheering you on. 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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09-22-2009, 02:23 PM
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#19
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Re: Cancer is back...I just knew it.
Oh Chelee, no! I do hope that you find a Dr. who makes you feel comfortable with your decisions on which tx to pursue. You will kick this ca's butt again. We are here for you.
Love,
Lexi
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09-22-2009, 02:40 PM
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#20
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Senior Member
Join Date: Jan 2007
Posts: 368
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Re: Cancer is back...I just knew it.
Chelee, I am so sorry to hear that.
Remember that you still have Tykerb to use if the re-occurrence is her2+, and lots of other chemos to try.
You might even ask about Adriamycin, since you didn't have it the first go round. It's tough on the heart, but tough on BC too.
Hang in there, girl. We are with you.
also for femur and ilium, demand a bone scan to verify mets.
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