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12-26-2013, 05:45 PM
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#1
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Kadcydla versus neurosurgery and paralysis
Does Kaycylda cross the blood brain barrier?
I am really in between a rock and a fast moving glacier. Neurosurgeon wants to do a laminectomy style removal of the t-8-9 lesion he says it shifts enough to right, gave oncologist info on IT Topotecan, has not found anyone using for "breast cancer mets" So the insurance will pay for it. He suggegeted KAdcyla, what I have found is that it sometimes they used in place of Tykerb and xeloda in a couple of trials. I am still on Tykerb but not xeloda anymore.
I have not a lot of time with the nerve symptoms, getting worse. Nor to reinvent the wheel .
Thanks Darita Pfeister
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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12-26-2013, 06:03 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Kadcydla versus neurosurgery and paralysis
Darita,
I don't have any treatment words of wisdom, but wanted you to know I'm in your corner and holding you in my thoughts and prayers.
Blessings,
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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12-26-2013, 06:28 PM
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#3
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Kadcydla versus neurosurgery and paralysis
Topotecan used with the Herceptin IT did not work for my daughter. The area became larger and the spinal fluid cells showed contamination.
They started Depocyt - a really fierce chemo that was given every three weeks IT and the other weeks in between she received the 80 mg Herceptin IT. Her neuro affects became worse for a while and she had to have dexamethasone but it took down the growth.
They have stopped the Depocyt now and she is just on the Herceptin IT for the leptomeningeal problem.
Of course she had to do the Abraxine for the lymph nodes that Kadcyla and other prior targeted drugs were not working to take down.
I don't know it the Depocyt would do the job for you or that your insurance would approve. It is a fierce drug and made her pretty sick for a while, but worked to take the tumor down and the Emend stopped the nausea and vomiting.
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12-26-2013, 08:16 PM
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#4
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Re: Kadcydla versus neurosurgery and paralysis
Thanks for your replies peace and Healing for 2014
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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12-26-2013, 08:40 PM
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#5
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Kadcydla versus neurosurgery and paralysis
Dear Darita -
I hope the suggestion above might help you if your doctors will give it a try.
My best thoughts for a successful treatment - whatever you decide.
__________________
"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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12-28-2013, 09:10 AM
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#6
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Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
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Re: Kadcydla versus neurosurgery and paralysis
I too have no advice, as I am not aware of the treatment. Keep us posted!!
__________________
[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
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12-28-2013, 11:19 AM
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#7
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Kadcydla versus neurosurgery and paralysis
To answer the original question about what crosses the blood /brain barrier......
I know of only three that do. Xeloda, Tykerb and Emend.
I do not think any of the targeted drugs like Herceptin, perjeta, kadcyla or chemotherapy drugs cross the blood /brain barrier.
The ones that can be given per ommaya or directly into the spinal cord per puncture have the best chance of working.
I sure hope you find something that works for you.
Ev
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12-28-2013, 11:38 AM
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#8
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Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
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Re: Kadcydla versus neurosurgery and paralysis
Rolepaul
Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 267
Re: brain mets
Brain mets stink. They are so scary and if you read literature and talk to doctors you get depressed. Here is a story I hope will inspire you.
Nina had a large brain met diagnosed on 11/2/2009. We did surgical excision, Cyberkife, and Tykerb/Xeloda. A couple of whack a mole radiations in the spring of 2009 and November 2010. Things looked stable, but in October 2011 started to have some hip/leg/back pain. Found three lesions on the brain surface and 20-30 satellite lesions in the spinal nerves. Went to the war room and came out with Intrathecal Herceptin and Topotecan. Got to the correct dosing and 90 days later saw no atypical cells, clean MRI scans, and other indications of disease no longer showing its head. Flare up at two points on labor day, but these are resolved. All I can tell you is to start at 40 mg of Herceptin via either an Ommaya reservoir or Spinal tap, with steroids for 3-4 weeks. Then go up to 1.5 mg/kg of Intrathecal Herceptin. In those cases where this has been done, the results are stunningly good. Have your doctor contact Dr. Loghin at MD Anderson Brain and Spine as she has four patients currently in treatment.
I am not here to save the world, but I am here to do good. I want to pay it forward for a wife that is alive 13 months after she was given a 90 day life span. We are living within 2.5 miles of her mother and I am enjoying new work. It is important to me to have others treated that have similar critical diagnosis. IF I can help you, that is just another smile for me for the day.
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011
mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.
I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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12-28-2013, 11:41 AM
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#9
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Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
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Re: Kadcydla versus neurosurgery and paralysis
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011
mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.
I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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12-28-2013, 11:43 AM
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#10
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Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
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Re: Kadcydla versus neurosurgery and paralysis
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011
mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.
I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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12-28-2013, 06:36 PM
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#11
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Kadcydla versus neurosurgery and paralysis
No advice sadly but wanted to send good wishes to you Darita. xx
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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12-30-2013, 07:57 PM
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#12
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Kadcydla versus neurosurgery and paralysis
I have not heard that t dm-1 9 kadcyla) crosses bbb. I guess that includes spinal fluid , but could attack bone mets anywhere. perhaps that's why your doc wants to try it. any metastatic her2 pt. who hasn't tried tdm-1 should definitely give it a try. my wife is 3 yrs on it, ned over 2. i hear adding perjeta increases its effectiveness.
tykerb crosses bbb, and some say avastin does. IT Herceptin is another brain tx at some research hospitals like md Anderson. lani and rolepaul know a lot.
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12-30-2013, 08:55 PM
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#13
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Kadcydla versus neurosurgery and paralysis
yes, Avastin does cross the blood/brain barrier - I forgot that one. Susan was on Avastin for a while but had side effects and it did not work for her. Everyone is different and reacts differently and individually to the treatments.
Ev
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12-31-2013, 12:27 AM
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#14
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Kadcydla versus neurosurgery and paralysis
Happened to see this one today on Cancer Connect about how to handle kadcyla side effects:
"Hi all,
I just wanted to share this with any of you on Kadcyla or Herceptin. I used to get Zofran while on the former and used to get blurry vision, dizziness, bitter taste, lack of appetite, constipation, dark urine, palpitations, etc. It got so bad that my oncologist ordered a brain CT which thank G-d came out clean.
I thought it might be the Zofran after researching its side effects online. Although my doctor thought Zofran was more or less without side effects, it's been a few days now since my last treatment and I have practically no side effects. It's a life-changer for me! And I never got the nausea Zofran was supposed to prevent!
So if you're on Kadcyla and have side-effects, try to eliminate any pre-meds and see if it helps. I want to thank you all who gave me advice when I asked if I could discontinue Zofran. Just in case, my doctor gave me Zofran pills that I bought before my treatment to take at home if I got nauseous, but I never needed it.
By the way, I used to get Benadryl while on Herceptin which made me drowsy. Herceptin alone was so much better!
So basically the message is, when we get side effects, it might not be the treatment but the pre-meds, and it's a good idea to see if we really need them. Even doctors don't know as much as we do because we are the ones who actually take them...
All the best to you all! Thanks for your advice & I hope this message will be helpful to many as well. :-)"
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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01-05-2014, 05:09 PM
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#15
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Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
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Re: Kadcydla versus neurosurgery and paralysis
Avastin worked for me, so far. I defo crosses the BBB. I was only on it for my necrosis though.
__________________
[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
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01-05-2014, 08:48 PM
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#16
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Re: Kadcydla versus neurosurgery and paralysis
thanks everyone. In the hurry and wait department, hopefully will hear something this week. Going prayerfully for IT topetecan, was a Dr was at MD Anderson, now in Texas at Texas Oncology around Austin. Dr Morris that actually was a researcher in a clinical trial in adults, including Breast cancer. Old drug, currently and most frequently used in children, via IT and Omaya.
So seeking CT of chest abdomen and pelvis, bone scan ASAP this week to make sure everything else is clear. (my insurance does not pay for PET/ct restaging) Breast cancer anymore. Just want to make sure everything else is clear before refusing Tdm-1.
I am still getting 100mg IT herceptin weekly and Tykerb 750mg daily. took xeloda 6 months in 3/13 and failed from the extreme neuropathy and dehydration from the diarrhea. told onc and neurosurgeon, will go back on Xeloda if needed with outpatient IV hydration and electrolyte replacement.
With increasing since Friday neuro symptoms, praying for a negative CT scan and a quick insurance approval.
By the way Texas Oncology group is a very large practice and are starting the IT Herceptin trials as well.
Peace and prayers
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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01-06-2014, 12:02 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Kadcydla versus neurosurgery and paralysis
Temodor also passes the blood brain barrier like Xeloda. It has been used in BC mets to the brain but is commonly used for true Brain cancer. I believe, that like Xeloda, it is also a pill.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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01-07-2014, 04:59 PM
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#18
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Hard place Rock and A moving glacier!!!
so Oncologist called last night, to discuss options. Prayerfully will get Ct of chest /abd/ pelvis and bone scan done the next couple of days.
He is wanting to try Abraxane, I suggested going back on the Xeloda with IV support, and lower dose. Oncolologist has already stuck his neck out for me to do the IT Herceptin. I talked to the main Nurse for the practice today and forwarded all the Info they I have sent re the Topotecan IT treatment, But there again it is off label and I don't think I have months to sit on this one.
Talked to Neurosurgeon again today, he could get this done within the next couple of weeks. Worse case paralysis waist down, best case weakness, and lots of rehab.
My major concern is if I start chemo, surgeon already worrying about counts, steroids I am still on etc. So If I do Chemo and it does not stop the Thoracic spine lesion at T8 then all I have just wasted time? Abraxane and Xeloda causes severe neuropathy, which I already have in both feet.
Do surgery after postop would continue getting my IT and IV herceptin, and Taking Tykerb, 750 a day.
Peace Hope and Prayers
Thanks for all the input
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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01-07-2014, 09:34 PM
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#19
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Kadcydla versus neurosurgery and paralysis
Darita, Your oncologist has your records and tests showing the size of the lesion, but have you considered asking for an opinion from another oncologist? MD Anderson is where we persuaded an oncologist to try the topotecan. He did so after consulting with Monica. It did not do the job for Susan however as the lesion grew with the Herceptin/ topotecan combination.
He had to go with the depocyt for a while. The depocyt cannot be mixed with the Herceptin so the Depocyt was given separately every three weeks.
Time is so important here, Darita.
I am concerned that more is not being done more quickly.
I am concerned and am hoping they come up with a winning solution soon.
Hope and best wishes to you,
Ev.
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09-20-2014, 05:46 PM
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#20
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Senior Member
Join Date: Jul 2008
Posts: 186
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Re: Kadcydla versus neurosurgery and paralysis
I don't know if Kadcyla crosses the blood-brain barrier, but at ESMO Conference, later this month the following abstract will be discussed.
" Abstract
Aim
Local treatment options such as radiotherapy or neurosurgery are the mainstay of brain metastases (BM) management. Whole brain radiotherapy (WBRT), however, is associated with severe late-toxicity. The LANDSCAPE trial established lapatinib plus capecitabine (LapCap) as primary systemic treatment in oligosymptomatic patients (pts) with multiple Her2-positive BM. Limited evidence exists regarding the activity of antibodies in BM. T-DM1 is an antibody-drug conjugate covalently linking trastuzumab (T) to an anti-microtubule agent (emtansine) with higher activity and lower toxicity as compared to LapCap. Therefore, we evaluated the activity of T-DM1 in newly diagnosed BM or BM progressing after local initial treatment.
Methods
Nine pts (median age 55 years) with Her2-positive BM treated at two Austrian centres were included. All pts had received prior treatment with T, five pts (55.6%) had already received lapatinib, and two pts (22.2%) pertuzumab as well. In two asymptomatic pts, T-DM1 was administered as primary therapy, while seven pts had documented CNS progression upon prior local treatment. T-DM1 was administered every three weeks at a dose of 3.6 mg/kg.
Results
Median follow-up was 6 months and median brain metastases-free survival 11 months. Seven pts (two with primary treatment and five receiving T-DM1 upon CNS progression) are currently assessable for CNS response. 3/7 pts (42.9%) had a partial remission, one patient progressing upon prior local therapy had stable disease lasting for fifteen cycles, and one patient had stable disease for 5 month. Two pts with prior WBRT had CNS progression after three treatment cycles.
Conclusions
This prospective case series again indicates relevant clinical activity of systemic treatment in Her2-positive BM. LapCap remains the standard of care but results of this analysis warrants further investigation of T-DM1 in BM in the context of prospective clinical studies.
Disclosure
R. Bartsch: has received lecture honoraria, research grants and travel support from Roche Austria. R. Bartsch has received lecture honoraria from GSK Austria; M. Preusser: has received lecture honoraria and research support from Roche Austria.All other authors have declared no conflicts of interest." |
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