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01-24-2010, 04:45 PM
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#1
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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This wk things could change, I'm nervous.
Monday morning (tomorrow) is chemo, & this Wed. I have my first PET/CT since my recurrence in Sept. 09. Due to my femur surgery I was "only" on Herceptin & Zometa from Sept. thur Nov. It wasn't till Dec. that we added Navelbine. I sure hope my scans show this is working? Adding the Navelbine so late in the game concerns me. Especially since my onc reduced the dose each wk instead of giving me Neupogen. (I'll be asking her why she did that?!)
Now that I've changed insurance I will be running out to see Dr. Slamon again if this isn't working. I'm still concerned after my last PET/CT because they weren't sure if it was in my liver or not? PET showed low activity...but CT showed nothing in liver? But that area has pain so I can't help but worry. It's bad enough it showed up in bones and axilla last time...I hope this Herceptin/Navelbine/Zometa has done it's job...especially since it's easy to tolerate. I sure have alot of anxiety thinking about my upcoming scan.
Once stage IV is it normal to choose the easier combo's first then to hit it hard?
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.
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01-24-2010, 05:01 PM
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#2
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Re: This wk things could change, I'm nervous.
Chelee,
I know this is scary, but it's so good that you get to gather more information, information is power...and I'm so glad you got your new insurance! Now you'll be armed and ready to do whatever you need to do. I'll be watching for news. B R E A T H E ...
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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01-24-2010, 05:37 PM
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#3
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: This wk things could change, I'm nervous.
Have you told them you feel pain in the liver area?
It might be worth making sure they do a liver function test (LFT) when they draw labs. It's not automatically done.
In terms of knowing whether things did the job, make sure schedule disruptions are factored in before abandoning Navelbine. You know.."leave no tool behind". (unless you're talking about exes)
How often are you getting Zometa? There is some interesting info on getting more than just bone met utility out of Vitamin Z:
http://her2support.org/vbulletin/showthread.php?t=39563 |
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01-24-2010, 06:46 PM
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#4
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Senior Member
Join Date: Aug 2009
Location: Owasso, OK
Posts: 185
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Re: This wk things could change, I'm nervous.
Chelee,
Please know you continue to be in our thoughts and prayers. Please keep us posted on your scans.
__________________
Hayley
Oklahoma
3/35/2009 - Diagnosed, age 39
5/7/09 - Mastectomy and reconstruction started. Two tumors found. Tumors were side by side. DCIS tumor was 2.8 cm, ER-, PR-, grade 2. Invasive tumor was 1.1 cm, poorly differentiated, grade 3, ER+90%, PR+95%, HER2+3. Thankfully, no node involvement.
5/29/09 - Second surgery resulting from difficulty healing from mastectomy.
6/2/09 - Began Herceptin treatments
6/23/09 - Began Taxotere and Carboplatin treatments along with Herception every 3 weeks.
10/06/09 - Completed Taxotere and Carboplatin - Yeah!!!
10/27/2009 - Herceptin maintenance and began Femara
12/10/2009 - 2nd stage reconstruction surgery
2/2010 - Body rejected saline implant
3/18/2010 - Second stage reconstruction using silicone implant
5/4/10 - Completed Herceptin - YEE-HAA!
May '10 - Body rejects silicone implant...taking a break.
11/29/10 - Hysterectomy
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01-24-2010, 07:16 PM
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#5
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Senior Member
Join Date: Oct 2005
Posts: 823
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Re: This wk things could change, I'm nervous.
Rich wrote:Have you told them you feel pain in the liver area?
It might be worth making sure they do a liver function test (LFT) when they draw labs. It's not automatically done.
Rich I know when ever I had blood work done this was always done, a complete CMP Panel that included the Liver panel.
I still to this day have it done when I see my Onc every 4 months.
Chelee praying that all turns out well on your PET/CT Scan.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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01-24-2010, 08:23 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: This wk things could change, I'm nervous.
Rich, my labs always include a CBC, CMP, & CA29.27. All my numbers have been in normal range. In the past I've had them go up and back down a little...but nothing too worrisome. But lately they have been great. I do have a seroma in that area that has gotten really hard after 4 yrs...so maybe the pain is coming from that?
I've mentioned this pain to my onc so many times it's ridiculous. She just doesn't seem concerned. But the pain is worse now then it's ever been...it's constant. I should get my PET/CT results back by Friday & I'll go from there. Hopefully this combo is working, & if not I will go out to see what Dr. Slamon has to say?
I just checked my calendar & the first time I got my Zometa it was seven wks apart...now this time it will be eight? (Not sure why my onc did that?)
Good point about the "disruptions & Navelbine". Point well taken...thank you. Also thanks for the link on Zometa...I have some reading to do.  Although I've done quite a bit of research on it before. I was always pushing my onc to let me have it long before my bone mets in hopes to prevent them...but she always had an excuse not to give it to me. (It's called keeping the costs down.) Now because I have mets...she has no choice.
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.
Last edited by Chelee; 01-24-2010 at 11:42 PM..
Reason: Correction.
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01-24-2010, 09:16 PM
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#7
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Senior Member
Join Date: Aug 2006
Posts: 492
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Re: This wk things could change, I'm nervous.
You keep fighting girl!! Thinking of you this week during scanxiety and beyond. Hope all the news is good, all the side effects are minimal and all the cancer-butt-kicking goes into overdrive.
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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01-24-2010, 09:45 PM
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#8
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Re: This wk things could change, I'm nervous.
Chelee,
I will be praying for you and will keep my fingers crossed for good results. All my love,
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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01-24-2010, 11:18 PM
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#9
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Re: This wk things could change, I'm nervous.
Thinking of you as you get your scans done. Pain in the liver area doesn't necessarily mean anything. I had and occaisionally have pain in that area and theres nothing. My brothers whole liver was eaten up with cancer and he never did have any pain in that area, so who knows. I am glad you got new insurance, maybe things will go smoother now...sherry
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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01-25-2010, 12:12 AM
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#10
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: This wk things could change, I'm nervous.
Chelee,
Will be sending positive thoughts your way and keeping you in my prayers.
Vicky
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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01-25-2010, 01:18 AM
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#11
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: This wk things could change, I'm nervous.
Sherry, It's a bit of relief to hear your liver pain turned out to be nothing. I'll just keep taking one day at a time.
Thanks everyone for the good thoughts and support...much appreciated.
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.
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01-25-2010, 05:05 AM
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#12
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: This wk things could change, I'm nervous.
Hi Chelee
Thinking of you and BIG hopes that your scans show BIG improvement. Glad you have new insurance and that you are determined to go back to see Dr Slamon.Getting a second opinion was one of the best things I did (and would do again even in I have to come across the pond!!)
Ellie
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01-25-2010, 07:17 AM
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#13
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: This wk things could change, I'm nervous.
Chelee,
Hope you scans go well today. Will be praying for you.
Amelia
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01-25-2010, 07:24 AM
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#14
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Senior Member
Join Date: Jun 2008
Location: NY
Posts: 81
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Re: This wk things could change, I'm nervous.
good luck Chelee! im thinking of you <3
__________________
Hi i'm Sue. I've been part of the her2support family since 08'. My amazing mother Hong was her 2 stage IV 9 years and bravely earned her wings, I still love this board and continue to her fight. Plz reach out if you want to connect:)
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01-25-2010, 07:59 AM
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#15
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: This wk things could change, I'm nervous.
Chelee,
I want to thank you and Becky for the links. I have now learned that caffeine can raise your markers. I have been drinking a lot of green tea. I drank so much Friday my eye started twitching.
Do you think it could raise the HER2 serum test also?
Amelia
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01-25-2010, 09:44 AM
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#16
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Re: This wk things could change, I'm nervous.
Chelee,
You are in my prayers and thoughts!
hugs,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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01-25-2010, 10:24 AM
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#17
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: This wk things could change, I'm nervous.
Chelee,
Thinking of you...As a liver mets gal, I had pain long before my met. I think it is a function of the medications we take and not necessarily the sign of a recurrance. If you markers are looking good that is a great sign and of course a back up by meeting with one of the best Drs. in the country is also a GREAT approach.
You go girl....
I too have wondered about approaches...load up on the chemo and kill the beast or slowly wear him down. Not certain which approach is best. Hopefully, Dr Slamon will have some thoughts in that regard.
Praying for a clean scan for you....Love...Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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01-25-2010, 12:37 PM
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#18
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: This wk things could change, I'm nervous.
Hi Lori
I think you have hit on a really good point, Is a high dose best or is metronomic treatment the way forward. I know Rich has posted about this approach and there seems to be some positive results from xeloda and tykerb used in this way.
There seems to be a consensus that in about 5 years we will have wide range of targeted treatments that may not kill the beast for good but may keep him in his cage till the cure!
Hugs
Ellie
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01-25-2010, 03:44 PM
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#19
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: This wk things could change, I'm nervous.
If the scans don't show any cancer in your abdomen you might want to ask for an ultra sound of your abdomen.
Sometimes we get other health problems. I had some discomfort in the area where my liver and gall bladder are located. The naturopath did some testing and told me my gall bladder was "stressed". I asked for and got an ultra sound of my abdomen. My gall bladder was full of gall stones. I avoided surgery by taking some medicine the naturopath prescribed to dissolve gall stones. It took a couple months to resolve the problem, but my gall bladder is better and I avoided major surgery with general anethesia which I hate.
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01-25-2010, 08:17 PM
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#20
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: This wk things could change, I'm nervous.
Chelee,
You go girl! (You 'rock'!
I'll be thinking of you.
__________________
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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