HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 10-18-2009, 09:10 PM   #1
vickie h
Senior Member
 
vickie h's Avatar
 
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
Unhappy Re: VickieH - trailblazing Pazopanib

Hi my sweet sisters and brothers,

The trial didn't go well I'm sorry to say. My mets have become extensive to the skin and my latest PET shows mets in my lungs now. I was taken off the trial after 6 weeks and they are now trying Gemzar with Cisplatin as the only weapon against this. Because my port is covered with the mets, they are trying to find veins to deliver the chemo, which has been difficult.
I am afraid I am losing my up-hill climb, though I hang onto every branch and patch of grass I find in this journey.
I want to thank my dear sisters and brothers here for all your support over the years and your love and compassion. I will continue to live each day to the fullest with grace and spirit and hope.
I haven't been on the boards lately because it has been a challenge to come up with the words to let you know what is going on. I feel so many others are going through such trying times (Barb, Marie, Joy, Pam) that I didn't want to add to toll that is being taken. But I love all of you and feel I needed to let you know.
Please pray for me and the others who seek hope and strength right now.
I love you all dearly,
Vickie
__________________
Love and Hugs, Vickie

Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
vickie h is offline   Reply With Quote
Old 10-18-2009, 10:51 PM   #2
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: VickieH - trailblazing Pazopanib

Dear Vickie -
I am so glad you posted, as I was about to ring your bell and find out how you are. Naturally I am extremely sorry the last trial drug did not do the job. We have missed your wit and charm here.

Is there ANY way to get into a T-DM1 trial?? I have a friend who is having good results against her skin mets with just three doses so far. I will be posting on that thread. She had become too weak for any other chemos and had been reduced to 1/2 dose on her last round of cytoxin. Her onc had told her he did not know what else to give her and she persisted on her own and got into this trial in Coeur d'Alene, Idaho. They are closing it soon.

I do so wish there was a way for you to get this drug. The Idaho trial is also for Pertuzumab for those who do not show good improvent on the T-DM1 alone. So far my friend has not had the Pertuzumab.

I am right there holding those twigs and branches with you, dear sister. Your faith is strong, as is our faith in you.
__________________
"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.
StephN is offline   Reply With Quote
Old 10-18-2009, 11:25 PM   #3
Chelee
Senior Member
 
Chelee's Avatar
 
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
Re: VickieH - trailblazing Pazopanib

Hi Vickie, I am so sorry to hear this last trial wasn't working for you. I'm with Steph on this one...you really might want to check into the TDM1 study and see if it's at all possible to get into it. In fact I was saw Dr. Slamon and he just lights up when talking about this study...he said it's had such great results. Another plus is it wouldn't be so toxic like the other chemo drugs which would be easier on your veins I would think.

My heart really goes out to you...& I want you to know I will be praying that the Gemzar & Cisplatin takes care of those mets for good. Sending you warm healing thoughts & prayers.

Love & hugs!

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
Chelee is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 09:13 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter