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06-05-2017, 04:45 PM
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#1
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Senior Member
Join Date: Jan 2010
Location: Thousand Oaks, California.
Posts: 199
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Re: Good and Bad News
Michka, I was so worried about you. I did WBR with hippocampal sparing in July/ August 2017. The hippocampus is where the brain stem cells reside. Do they have any trials for ONT 380 in France. I spoke to the company that makes Neratinib and it is very difficult to get compassionate use in France. In December, my doctor wanted to put me on hospice, it is a tough fight. I am so happy to read your message.
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.
Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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06-12-2018, 08:18 AM
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#2
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Member
Join Date: Sep 2010
Posts: 15
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Re: Good and Bad News
Hi again Waterdreamer, Thank you for posting on one of my old posts. I found your last post. I hope you are still with us. Did you ever try the cannabis oil? Did you ever try the Rick Simpson cannabis oil directions of using 1 gram of cannabis oil a day? I live in Texas so I don't know anyone that has. He made it sound very real. He made it sound like it could bring one back from the brink of death. It sounds like you needed something like that. I just hope more than anything that you are ok, though. Love you. I personally would have tried a good strong THC, whole plant oil if I lived in CA. However, I was in Los Angeles on January 2nd 2018 and the store I went into, made the choices look harder. It was very crowded that day, and it was closing time, I was going home that week, and wasn't going to take anything like that across the border.
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2007 DX DCIS ER-/PR-/Her2+
2007 3x lumpectomy, radiation
2010 DX DCIS ER-/PR-/Her2+
Mastectomy
Tram Flap - 1) wish I could delete that.
2)Interested if anyone did this, and then got implants. 3)Ruined stomach muscle. (Appreciate info about fixing this).
Recommend New Orleans instead of MD Anderson for all surgery.
12/17/2010 TCH 6x/3wks Herceptin 3/wks til 11/17/11.
12/23/2010 Lost Hair - 10/5/2011 Wig free - 4/14/2013 Long Hair again.
Severe nail detachment-(Past) 10/2011 - toenails still trying to grow back. 4/14/2013 - Normal toenails & fingernails.
Severe neuropathy (upper thighs/upper arms) - taser sensation - (in the past), light touch finger or toes = burning. Sock free (still). Can bend knees and ankles, now. Dr. stopped Docetaxel after 5th, due to possible permanent nerve damage. (now in hands/fingers, feet/toes - pain, interested in help). 4/14/2013 - Neuropathy much less. Nerve damage is permanent in fingers & toes, hands & feet. Toekini ($10) from CVS pharmacy works great for my CIPN - feet at night. Nothing can touch my toes without burning me. I can not braid hair - fingertips do not work right.
Severe constipation - (made worse by drinking small swallow of water with Senecot instead of a full glass of water - caused concrete type blockage of bowels - drink lots of water with it!)-(Past)
Severe Reflux - (great medicine available for this) - Carafate (past)
4/14/2013 Much happier now. Smiling a lot. Started working in the yard again, but must wear toeless sandals. Blessed. Best wishes & Blessings to you all. Has anyone had success with Rick Simpson Oil in curing HER2? Very interested in hearing details. I live in Texas and do not know anyone that has tried it. We can not use it here.
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06-16-2018, 02:05 PM
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#3
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Good and Bad News
Bad news, Abbott.
Both our Michka and Waterdreamer have crossed the bridge from this life.
Good luck with searching out further info on cannabis.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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