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Old 12-01-2005, 05:27 PM   #1
TriciaK
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Echo and Muga reports

I said I would let you all know when I got the results of the echo and MUGA, so here I am. I saw the cardiologist today and he learned a bit more about herceptin--(he had never heard of it when I first saw him over a year ago! ) The latest echo score was 30 and the MUGA just under 37. Six months ago it was 58. My oncologist took me off the herceptin last week, a bit scary, but I was able to be on it for 15 months inspite of starting out just after a heart attack. I think under the circumstances, a drop of 21 points isn't too bad. And everything has worked, because my last PET showed NED. So I am diagnosed with probable congestive heart problems. I am feeling very weak and tired, hard to breathe and can't do much, but I am not too discouraged. In the two weeks between the echo and the MUGA I doubled up on coQ10, fish oil and garlic caps, and feel that helped. The cardiologist wants to double the accupril and start metropolo again. My blood pressure is normal and I stopped the Metropolo 6 months ago because of dizzy spells, so I'm not sure if starting it again will really help, but he wants me to try it and see him again in a month. I am adding more olive oil and flaxseed oil. Any other suggestions? Most of all, I promise to keep the faith, stay in touch and stay positive! Hugs to all and best wishes for a merry Christmas and the best of new years! Hugs, Tricia
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Old 12-01-2005, 08:29 PM   #2
al from Canada
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Hi Tricia,
since you are off herceptin, have you considered a clinical trial such as lapatinib or one of the HER2 vaccine trials? I'm sure these have some measure of therapeutic value of they wouldn't be offered . My suggestion would be that you go to the NCI web site and review the clinical trials (non-invasive) that apply to HER2 BC that is NED.

What you probably need to do is give your heart a rest BUT also but yourself some more time until the cardio thing improves. All the supplements you are taking make sense. I would probably add three things: curcumin, which is gaining a reputation as a cyto-toxic herb specifically active in HER2; immune boosting mushrooms such as maitake and an and an adaptogen such as rhodiola rosia.

Good luck and keep us posted
Al
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Old 12-01-2005, 10:55 PM   #3
kristen
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Dear Tricia,

Hugs and a warm Holiday Greeting back to you and your family. You have such a good attitude and faith and an onc who is right on top of it that I think you will be fine.

I admire you for keeping up on taking supplements that will help you and your heart to get better. You amaze me on how well organized you are. I am lucky to remember to take the pills that I am supposed to take.

Have a happy holiday season. I guess it is right around the corner, I better get a move on or I am going to have some very uphappy children come Christmans morning. love to you.
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DX: 10/29/03-Stage IIB, 3/12 nodes +, er/pr-,
Grade 3
MRM: 11/07/03
TX: TCH-BRICG Study-6 tx's; 12/15/03
Herceptin; til 12/14/04
Rads: 30 days
BRCA neg
S-Gap: 12/15/04
Oct 05: LAVH
NED
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Old 12-02-2005, 06:56 AM   #4
Sheila
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Tricia
Take this time to let the heart meds work, strengthen yourself and be ready if you do have to fight again...have they checked your blood count, as anemia can also mimic congestive heart failure with the shortness of breath and weakness. You will be in my prayers for strength and healing...you are so important to all of us on this board....and such a role model! Take it easy and let others do for you for a change.
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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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