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06-19-2011, 07:52 AM
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#1
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Senior Member
Join Date: Jul 2008
Location: Durham NC
Posts: 73
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Re: Calling all stage iv sisters
Yes Karen, I am Stage 4 with that involvement--anything outside of that immediate area they consider a 4. Plus, I did the H for a year after all the chemo, rads, etc and I lit up on my PET very shortly after I finished H whereas before I was clean. Did the X and Ty. and started getting great results immediately but stayed on that combo for a long while after I even was scanning clean. Been on Ty ever since and doc does not want me off of it, period, even though I would sure like too, lol! But so very thankful for great results so far and glad I found my inner you-know-what to get to where I am today. You should have great results with that combo, I'm glad you are on it!
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4/06 Found small lump, biopsy + at 34 yrs.
5/06 Diagnosed IIIC, lumpectomy, 11/11 nodes HER2+
6/06 port placed. 4 Ad/Cyt and 4 Tax.
11/06 bilateral mastectomy
12/06 begin Rads
1/07 Finished Rad-started H, weekly for one year.
1/08. Finished H, scan showed activity in nodes, Doc says 'not to worry about it' and sends me on my way.
7/08 Scan shows numerous involvement in armpit, also large active nodes in supr. clav.
Doctor refused to give me HER2 meds.
8/08 fired doctor, found another. Started Tykerb/Xeloda. After one round, nodes are shrunk and normal sized!
12/08 NED continue Ty/X
3/09, 6/09, 9/09, 11/09, all scans show NED
Dropping X, continue Tykerb
As of 6/10, 3/11 still negative, continuing Tykerb...
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06-22-2011, 12:26 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Re: Calling all stage iv sisters
What a wonderful thread! I hope my post will be helpful also. Most of you probably know my history since I think I may well be the oldest survivor on this site, being age 81 and now fighting my 4th round of BC in 26 years. I was diagnosed in 1985 with in situ stage 1 BC in my right breast. The only treatment was a bilateral mastectomy. The cancer returned in my spine (2 vertebras) in 1990. I assume it should have been considered stage 4 then because it had travelled, but don't know for sure. Again no chemo, just tamoxifen and alternate treatment, including self hypnosis and vegetarian diet. Went for 15 years NED. I stopped seeing an oncologist because I moved away. My last MRI report had read "healed metastatic breast cancer", so I just more or less forget about the cancer! Then I had a heart attack in 2004 and in the testing process a CT scan showed that BC was back, in my right lung, and now her2. I have to be thankful for that heart attack! Six months of Navelbine and Herceptin, then herceptin alone for 11 more months stopped the BC. My ejection fraction dropped to 30 so I had to stop the herceptin. I had a triple bypass in 2006. A year ago the BC showed up again in the right lung, and we have tried 5 kinds of chemo since then. I had some bad side effects to the first 4, and am now on halavan alone. I have become weaker with each chemo but am hoping the halavan will do the trick. I am uneasy about not having herceptin too and am considering seeing another oncologist.
I hope my story will be encouraging, even though I am fighting the Beast for the 4th time. I am thankful for the 26 years I have been fighting and all the blessings received. This last month has been the Month of the Babies: 5 new great-grandchildren born in the last 30 days, 3 boys and 2 girls! I have lived long enough to see my children become grandparents! The total now for my husband and me is 9 children, 32 grandchildren and now 48 great-grands! My prayer is that each one of you may continue to win the fight for as many years as I have! This website has been a blessing I am so grateful for and I am thankful for all I have learned and shared here. My advice to you is to keep being a part of this wonderful caring and informative group, and remember faith and fear cannot coexist. There has never been as much hope as there is now for new treatments, even a cure! Hugs, TriciaK
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06-22-2011, 05:08 PM
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#3
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Calling all stage iv sisters
Thank you, Tricia K! What an inspiration.
If I get 26 more years I'll be in my 80's too. I'll take it.
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Amy
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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