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Old 01-16-2012, 12:51 PM   #21
Candy Jacobson
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Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

diagnosed with IBC in 2009
Finished adrimycin, cytoxin
Finished taxol and herceptin
Last Herceptin on January 14th. 2012
Looking to get into some her2nu positive trials.
Things are going great!Candy
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Old 01-16-2012, 10:05 PM   #22
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Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

Look up ElaineM - she is 13 yrs out from dx
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Old 04-28-2012, 07:13 PM   #23
Midwest Alice
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Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

4 years out. Still on Herception and I guess its working.
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04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 05-02-2012, 02:43 PM   #24
Candy Jacobson
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Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

I have been off of herceptin for quite awhile and am approching the 3 year mark from Inflammatory Breast Cancer. I think if they can treat it, which it sounds like they can, then you are going to beat this. Continue to hold on in faith, and don't ever give up. May God bless you. Candy
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Old 08-01-2012, 05:47 AM   #25
MJsHusband
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Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

I don't know what "survivor" means but MJ is approaching the 2-year mark with her IBC. She's been Stage 4 from the start and has had one recurrence but seems to be NED now. She will have PET/CT scans and MRI in September. We just got back from a nice vacation in Myrtle Beach and she continues to be busy with her work and going about her usual life.
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08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)

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Old 08-01-2012, 06:16 AM   #26
KDR
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Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

Hi,
I just passed my two-year mark on 22 July, Stage 4 from the get go. Live in The Land of Yes!

Karen
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World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 08-01-2012, 10:22 AM   #27
jacqueline1102
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Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

Hi Greg,

I would encourage you to contact the Inflammatory Breast Cancer Research Foundation with this question. Ginny Mason, RN, BSN is the founder of this organization and an excellent resource. I subscribe to the newsletter which comes out monthly. Carol McWilliams is the editor of the newsletter and her email is carol_ibcrf@gmail.com. Lots of research going on and the Indiana University School of Medicine is stepping up. Lucky for me I live in Indianapolis. I may be off base in my assessment; I don't think there are many Inflammatory breast cancer women on this website just because for one IBC is rare. I have noticed, having observed from afar on an IBC discussion board, that there may be some IBC women who feel so alienated from other breast cancer patients that they may stay away from this site. Which is so sad for them, really, as I believe this website has been far more useful and the people far more helpful than the IBC website. Recent activity on the IBC discussion board facilitated my decision to withdraw from that site. To answer your question, my oncologist had me speak to someone he treated. She has/had IBC which had spread to her liver and brain. She is now 8 years out and is on maintenance drugs. She is ER/PR + so she takes the hormonals which gives her more treatment options. I think that was a huge thing in her favor. I have spoken with this patient twice and she is amazing. She worked fulltime during the whole ordeal with the exception of treatment for her brain. She just retired this spring from her job and is now taking care of her elderly mother. When diagnosed she was 57 years old. Her only complaint has been a 25 pound weight gain. Her philosophy was keep working, keeping attending church, and enjoy your family. Her quality of life has been great. Hope this helps. I think your wife's attitude of embracing her life is critical to her quality of life. My treatment team recently said to me that a predictor of longevity seems to be complex although they all agreed that having good health to begin with (other than that cancer thing) and the response to treatment are significant factors. Take care and glad you enjoyed your vacation!
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10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
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Old 08-01-2012, 06:12 PM   #28
Delaney
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Red face Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

Jacqueline, What treatment did this lady have for the brain mets . I have never come accross anyone else who lived so long having had brain mets. Its so encouraging. Thank you for posting.
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 08-02-2012, 08:49 AM   #29
jacqueline1102
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Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

Hi Delaney,

I am not sure what procedure she actually had. I will have to call her. I know that there was just one spot and she was unable to work for a short time. What was also amazing about this is that her oncologist (the same one I have) psuhed to have his colleague from another hospital do the surgery because the one where she was treated did not have anyone on staff who could do the surgery. Her oncologist really went to bat for her. So, what was cool another surgeon at another hospital (not affiliated with the hospital that my oncologist worked for) did the surgery and was somehow able to get the insurance to pay.
You may want to look at other's profiles on her because I think Steph is someone who had brain mets and has quite the remarkable story.

Take care,

Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
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