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07-17-2010, 08:48 AM
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#1
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Senior Member
Join Date: Jan 2010
Posts: 170
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Creatinine levels
Update on treatment- I met with the cardiologist on Wed. and found that my LVEF was actually 49-down from 64. I have not had a Herceptin treatment since June 14th. I have started taking CopQ10 at 200 mg a day. He said anything below that amount will do nothing. He said there is no data to show it improves heart functioning, but also said it could not hurt. I have walked throuhout the treatments, and we hike the mtns of CO. regularly, so I am very active.
Also, my creatinine levels have gone from .7-1.1 this last visit on Thurs. went ahead with the Zometa, but was told that they are watching it closely.
I am finally meeting with my onc. to discuss the second opinion I got from an onc. at U of C who said he would maintain me on Herceptin once my ticker is better. My onc. wants to stop Herceptin altogether and scan regularly for another recurrence.
So, I have a half hour appt. scheduled for 7:30 Tues. morning to discuss all this stuff.
I really do feel overwhelmed at times trying to make these decisions. There is just no data out there for me to point to and say "this is what we need to do".
Anyway, if anyone knows how to improve kidney function, other than lots of water which I already do, please let me know.
Have a great weekend everyone,
Emelie
__________________
Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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07-19-2010, 04:17 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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Re: Creatinine levels
Well your onc must be living under a rock..(along with a heap of others no doubt)....there is a lot of evidence to show that Q10 improves LVEF. If you google coenzyme Q10 and heart function you will see this for yourself.
I am using LEF's Q10 which is a very good one..I have been on Q10 for about 9 years and have tried a number of different brands and this one I have found to be the best so far. I take 200 mg a day 100 mg at breakfast and 100 mg at morning tea or lunch.
Hang in there!
Cheers
jackie down under)
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07-19-2010, 05:52 AM
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#3
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Creatinine levels
Emelie
My LVEF dropped from 64 to 46 about 5 months ago....I had never had a problem. My oncologist sent me to a cardiologist and he put me on Coreg 12.5 twice a day, which I will remain on. It strengthens the heart. My LVEF was back to 54 in 6 weeks, so i have continued on Herceptin, soon to be 8 years on it.
Hope this helps.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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07-19-2010, 12:31 PM
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#4
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Senior Member
Join Date: Jan 2010
Posts: 170
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Re: Creatinine levels
Sheila,
Thanks so much for posting. I will mention to onc. tomorrow when I meet with him. Hope you are doing well and your life has calmed down a little.
Will keep you posted on my "developments". (seems like its always something)
Take care,
Emelie
__________________
Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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07-20-2010, 11:35 AM
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#5
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Senior Member
Join Date: Oct 2008
Location: Detroit, MI
Posts: 205
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Re: Creatinine levels
Hi Emelie-
No advice but wanted you to know you are in my thoughts and prayers regularly. You are a rock star.....! I love it that you are near the mountains and can be a part of nature healing on a regular basis!
Stay strong, girl
Maureen
__________________
Maureen
My loves
IDC & DCIS, HER2+++ Diagnosis: October 1, 2008 - Tumor: 6.8 centimeters, never showed on mammograms
- ER-/PR-
- November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
- Stage IIIc
- Lapatinib Clinical Trial start: November, 2008
- Surgery: May 5, 2009
- Started Herceptin: May 19, 2009
- Started Radiation (33 rounds): June 10, 2009
- September 2009: Moved to Michigan to be closer to family
- 12/09 - still on Herceptin until May 2010
- August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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07-24-2010, 07:20 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Creatinine levels
Emelie,
As for kidney function, I have a friend with polycystic kidney disease, low kidney function, and she limits her protien intake for this reason. Hope this helps
Keeping you in my prayers.
__________________
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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