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10-05-2013, 02:29 PM
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#1
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Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
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Neuropathy from Avastin - infusion #1
Well, I wasn't expecting to write about this complication from my first Avastin infusion.
I had my first tx on Wed., and by Thursday morning I knew something was different.
Numbness and tingling in my right hand and lip.
Now, after a trip to the emerg to rule out bleeding, which they did..thank goodness, I have full neuropathy on the right side. I'm not sure what all of this means. I'd like to think that the avastin is already working and my brain necrosis is shrinking and some nerves just got in the way. I don't know.
I'm up to 16mg of dex over the weekend to see how it goes, so far it's still the same.
Hard to take care of a 2 and 4 year old, that's a bummer.....big time.
I just hope that some sort of sensation will return.
I thought the loss of right sided vision was enough to deal with, now this. Trying really hard to think that the Avastin is working, and I'm just going to have to deal with all of this in time.
There wasn't any surgery for me, so risky, too deep.
Trying to stay hopefully and optimistic over here.
I wanted this to be so smooth, but it seems that there is always a hurdle in this crappy cancer process.
Soooo....the good news. I'm alive and get to laugh with my kiddies everyday!!!
Thanks for listening, and supporting always my friends.
And of course Denise, thank you for your time and support. I'm thinking of you in Hawaii right now!!! It's going to be an awesome trip!
Jill xo
__________________
[
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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10-06-2013, 11:10 AM
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#2
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Neuropathy from Avastin - infusion #1
Hi Jill,
There are probably quite a few threads on neuropathy here on the Board. I did find a thread on Avastin posted by 'lizbeth: http://her2support.org/vbulletin/sho...hlight=avastin
Enjoy your trip and congratulations again on getting married in April.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
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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
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Irrtbl bowel 1'09
Colonoscopy 313
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Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
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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
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"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
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10-06-2013, 12:01 PM
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#3
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Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
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Re: Neuropathy from Avastin - infusion #1
Thank you so much. xoxo I appreciate it all. Jill
__________________
[
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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10-06-2013, 05:16 PM
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#4
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Senior Member
Join Date: Apr 2011
Location: Port Hedland, Australia
Posts: 382
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Re: Neuropathy from Avastin - infusion #1
Jilly - I am so sorry this has happened after just one infusion - I really hope like you it is a weird reduction side effect?
I'm afraid I havent any advice just wanted you to know I care x
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy
Praying the Herceptin is as good as its hype!!
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10-07-2013, 03:40 PM
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#5
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Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
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Re: Neuropathy from Avastin - infusion #1
Thank you JennyB.
xoxo
__________________
[
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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10-07-2013, 05:02 PM
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#6
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: Neuropathy from Avastin - infusion #1
Jilly,
I am right here with you. Beyond hoping. ASSUMING. (See A SIMPLE FORMULA FOR CHANGING THE FUTURE thread please.) Everything I want to say to you right now seems to be in there...
You did the right thing (emerg rm) and ruled out... Now move forward -- living AS IF what you want is already a reality. Why? Cause it is! You just have to have faith and step into it and live it. With tenacity! And love.
A 2 and 4 yr old? Oh my. How blessed. Joyful. Challenging under the best of circumstances. Marriage! Life's best is yours! I believe it. Sending my Love and healing Light,
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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10-07-2013, 10:00 PM
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#7
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Neuropathy from Avastin - infusion #1
I can't imagine how hard it is to take care of your kids with your whole right side affected like that and the vision on that side as well. Im so sorry. Definitely not what you were expecting and certainly not what you were hoping for. Obviously, the Avastin is having an effect on things, and hopefully this is just a temporary situation letting you know, hey, Avastin is up there kicking things around. I'll pray for you and send lots of positive energy. When I meditate Im going to picture you healthy spending time with your children and husband. Keep the faith, we all have faith in you too.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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10-11-2013, 06:36 AM
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#8
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Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
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Re: Neuropathy from Avastin - infusion #1
Well Jackie, Jenny, Andi, and KsGal, Thank you thank you thank you!
I have some good news to share.
I had an urgent MRI and guess what!? after only one infusion, the avastin is working.
I couldn't believe how normal my brain looked.
The radiation oncologist looked at me and said, well good news....it looks like it's shrinking, the necrosis, that is. 
We were all smiles.
They are holding off for a week, to see if I get any more sensation back in the hands and feet, leg....but the main thing is that it's working and I wanted to share will you. Thank you for prayers, meditation, positivity, getting back to me, helping me, love, healing light, kindness, etc. I appreciate it all.
I'm going back to hug my babies now.
Happy Thanksgiving and I'm thinking off all of you this weekend.
Much love, a BIG HUG from me to you. xoxoxo Jill
__________________
[
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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10-11-2013, 07:50 AM
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#9
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Senior Member
Join Date: Apr 2011
Location: Port Hedland, Australia
Posts: 382
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Re: Neuropathy from Avastin - infusion #1
YAY. So happy for you Jilly will sleep esp well tonight xx
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy
Praying the Herceptin is as good as its hype!!
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10-11-2013, 01:27 PM
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#10
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Neuropathy from Avastin - infusion #1
So much to be thankful for!!!
Thanksgiving is my favorite day of the year! (ours isn't celebrated till next month... and this year it coincides with Hanukkah! Blessings upon blessings!!)
Here's to much more shrinkage, and far fewer SEs!
You go girl!
Much love... and thanks for knowing you!
Denise
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10-12-2013, 06:59 AM
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#11
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Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
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Re: Neuropathy from Avastin - infusion #1
Denise, I'm thankful for so much this weekend, and everyday. I'm thankful for you!
Much love to all of you!!!
Gobble gobble, even though the Tofurky won't say that.
__________________
[
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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10-12-2013, 01:47 PM
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#12
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Senior Member
Join Date: Oct 2011
Location: British Columbia, Canada
Posts: 139
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Re: Neuropathy from Avastin - infusion #1
Happy Thanksgiving, Jill. This weekend is a good opportunity to see all the blessings we have in our lives-hug your loved ones, I know I will be.
__________________
Dx Age 47 July/09 Stage 2B/3
Left Mast. Aug 09- 1 of 3 positive nodes in axillary dissection (yes only 3)
ER+ 90%, PR+ 20%, HER2+++
4 x AC, 4 x Paclitaxol and H (Neupogen for 7 cycles), Herceptin complete Nov 10
Mar–Apr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 – 3 cm met to sternum
Oct 11-Letrozole for 3 mths, start Clasteon-bone remodeller
Nov-Dec 11 - Happy 50th Birthday -20 rads to sternum
Jan-April 2012 Taxotere/Herceptin-6 cycles (Neupogen for 5)
Herceptin every 3 weeks-Letrozole added Nov 2012
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10-13-2013, 09:00 AM
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#13
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Neuropathy from Avastin - infusion #1
Jill,
I'm so glad you got a great MRI, and that bleeding has been ruled out. Yes, much to be thankful for.
Praying, hoping, and envisioning with you!
Amy
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10-13-2013, 03:26 PM
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#14
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Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
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Re: Neuropathy from Avastin - infusion #1
Thank you Caroline and Amy for your kind and relaxing words of hope and blessings. Have a great Thanksgiving weekend to you. xoxo Jill much love
__________________
[
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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10-14-2013, 10:22 AM
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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: Neuropathy from Avastin - infusion #1
I mean.....Happy Canadian Thanksgiving from me to all of you!
__________________
[
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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