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Old 04-03-2015, 12:38 AM   #1
dchips1
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Join Date: May 2006
Location: Mesa, Az
Posts: 219
Back from cyperspace

Hi this is Darita,
tried for last 2 hours to update/ add to my profile no matter how much of It I removed. LOL, goes along with the last 6 months of the attack of windows 8.1, losing all my contacts, mail inbox totally crazy, and came to a conclusion on Monday when my sons homework tablet was dropped an ran over.
With homework worth 100points, and a huge chunk of his science fair project on it. As of course was not recoverable data. Cyberspace fun. I keep changing font to soft purple as well, whatever taking too much time.

I have lurked on and off for awhile. The past almost 2 years have been a huge roller coaster ride, God is still here carrying me.

Have attended so many funerals, including my older sister at 51 last fall, heart breaking news of Angels from here and friends losses as well. Weddings, most will succeed prayerfully, long term relationships, graduates college good jobs. Gained a beautiful gift of a second grandchild, with parents whom love dearly but need lots of support.

and they stress is bad for me, add a 14 yr hold with a twist of autism ADHD, new school and that Puberty word. Velcro wall anyone???
10/13 I was using a rollerator walker, drove and stayed with my hubby for a total knee replacement 7 days.
08/14 had to have transportation to take me in wheelchair and him in a total right shoulder brace, to have a total rotator cuff repair, at 51. Was trying with my son to fix the patio roof and fell off the short ladder. post op it took my friend and 2 nurses to load us up to get home. Would have made a good video.
So as of right now I can't even make my post look nice, but it is time for bed since Science fair only required 3 hours of sleep last night, Chemo today, and it now 1230 in the morning, I am going to paste what I was trying to put in history about my journey. They say start a blog, I say some day. Still trying to get rid of 600 emails from the server!!!!!
__________________
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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Old 04-03-2015, 12:48 AM   #2
dchips1
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Location: Mesa, Az
Posts: 219
Re: Back from cyperspace, post IT herceptin

1/29/14 HIHO HIHO its off to Neuro surgery I go
2014
1/29 Thoracic Spine Surgery estrogen trace, HER2 +++
Brown Sequard Syndrome, 4 t-spine titanium screws, dropped blood pressure
1/29 -3/1 Icu
2/1 pm to neuro floor
2/3 off to Neuro Rehab
Right leg sensitive with paralysis, left leg functioning super numb. Shoulders, arms wrists weak and painful
2/18/19 Right lower leg /foot 3-4+++ pitting edema, us/ xray negative for DVT/FRACTURE
2/21 shingles right upper ribs
2/26 dc to home from rehab with supports and loaner wheelchair,
2/27 It and IV Herceptin
3/4 Echo >60& normal otherwise
3/10 PT OT 3x per week Right foot drop
3/19 scoliosis from exam “New”
3/20 grade 4 diarrhea nothing RX natural or diet stopping, bladder incontinent
4/9 300am massive upper right sided pain under ribs, Us normal elevated lipase 111
4/16 hida scan negl still have pain.
4/21 upper back, shoulder pain bilateral, left leg toes regaining feeling, Left leg bruises easily from having to use to propel wheelchair and hitting on chair. Left knee now has more pain than before.
Right leg swells
3x per week OT and PThome
Vision changes big time!
5/14 Lipase elevated
7/14 Right hip muscle fat loss AVN, arthritis/arthrosis in all joints.

7/14 left leg weak sensation toes to pelvic region, Mri shows t-9 lesion growth
8/15-8/215 Cyberknife
Started Perjeta, taxotere weekly IT IV herc
10/14 Mri T spine shrinkage
CBC immature cells,left shift still elevated lipase, neutropenia anemic,
10/28 back pain, Lower disk to the right feels like a marble with pain right hip pelvis, Right knee, wrists bilateral, lumbar thigh edema,Can’t weight bear right leg, foot drop, right thigh muscle loss, left leg numb swelling right greater than left, left leg spasm. Bilateral neuropathy feet,weak, cramps in fingers hands Bilateral shoulder pain from upper lesion. .
2 open tori osteo/radio necrosis lower mandible bilateral
Lots of urinary incontinence, bowels tends to be more on the constipated side.
Tailbone tailbone *2 small decubitus spots
11/19 2 units blood 11/20/14 Herceptin taxotere perjeta
11/20 pacer gait trainer A giant walker with seatbelts and straps
11/20 x-ray pelvis right hip osteopenia
11/21/14 decubitus wound.
12/6 CT pelvis osteoarthrosis bilateral hips, Right with Avascular Necrosis, atrophy muscle
12/9 labs still show immature granulocytes left shift
2015
01 still have bouncing lipase 200-600, right sided abdominal pain.
1/3 right calf swollen and leaking clear fluid.
1/5 echo normal
1/7 Tia symptoms
1/9 3t Brain MRI no new changes
1/10 started Toviaz
01/1 T- spine L-spine MRI growth right side at t-8 right side , t-5 lesion ? lepto? lumbar mild degenerative facet arthrosis hip denervation liver spots too small
1/20 cracked right upper crown 1/21 able to repair
1/26 R lower leg dry and healing. ADD bilat intermittent pressure toes to knee device for home.
1/31 right leg leaking clear fluid again
2/6 New ortho specialist for hip review, AVN right greater than left
2/7 posture support
2/10 Right leg wound check 1 no infection
2/18 sinus infection Rx Augmentin 10 days 875 mg bid
2/20 right calf still swollen, no drainage leg cold to touch, small clot posterior tibial vein no blood thinners stroke risk
3/16 MRI t-spine abnormal curvature, mild degenerative disks T 5 lesion showing up again lepto “? stable . T7-8 grew intradural and intramedullary, lepto “?edema increase edema
U/s sound right calf no change in superficial clot
3/27 weekly IT IV Herceptin, Perjeta Q 3 weeks IV and Taxotere 2 weeks
Labs still show immature granulocytes
Have 3 open tori osteo/radio necrosis lower mandible bilateral
4/2 waiting on last T spine L spine review from Neurosurgeon
Next week meet ENT dr to get Auths for Jaw eval. orders for the hyperbaric tx. Replace tubes in my ears. Ins will pay for jaw, but not for hip AVN At least you go in feet first so, oh darn, everything gets extra oxygen.
Living in the Hurry up, Call again, Wait Department LOL


Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
__________________
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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Old 04-03-2015, 05:34 AM   #3
lkc Gumby
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Posts: 429
Re: Back from cyperspace

Good to see you again Darita! I am so sorry for the loss of your sister. I lost mine a few years ago , and still miss her.
You certainly have alot on your plate, and seem to be doing really well. I guess my question is what the heck were you doing on a ladder? I say this in jest as I just recently broke my foot and then the following day fell in the bathroom.
Anyway, I am glad to see you and hope you get relief from your pain.
__________________
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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Old 04-03-2015, 11:35 AM   #4
KDR
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Location: New York, New York
Posts: 1,580
Re: Back from cyperspace

Hello, Darita!! So glad to hear from you!
Hang in there, great things are happening!
Karen
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Old 04-03-2015, 11:51 AM   #5
StephN
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Location: Misty woods of WA State
Posts: 4,075
Wink Re: Back from cyperspace

Dear Darita! What a convoluted path you have been traveling! Thank you and I am so glad to hear you made it through the surgery and have lived to tell about it! Usually NO news is not a good sign!

Sounds like the IT Herceptin and Perjeta are helping keep you with your family, who have had a lot to bear.
__________________
"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.

Last edited by StephN; 04-03-2015 at 09:23 PM..
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Old 04-03-2015, 01:39 PM   #6
dchips1
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Join Date: May 2006
Location: Mesa, Az
Posts: 219
Thumbs up Re: Back from cyperspace neurosurgeon review

It was my husband who fell off ladder! I do good not to fall off my wheelchair,when going to potty, or into bed!!!


Last MRI review The patient's MRI scan of the thoracic and lumbar spine did not show any growth of the tumor. There is still some edema in the cord but no new tumor progression. Yeah God







__________________
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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