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Old 11-03-2006, 06:10 PM   #1
Tom
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continued...

Remember that Mom has had NO conventional chemotherapy. I have to ask myself the question: Is there something, anything, beneficial about Mom NOT having received conventional rounds of powerful chemotherapy drugs, only Herceptin alone as a single agent? Is all of the nutritional and supplement intake really helping suppress the cancer? Is the curcumin really inducing apoptosis in any remaining cells? Is the green tea and green tea extract really acting as a tyrosine kinase inhibitor? Is the inositol hexaphosohate really doing it's job by inhibiting PI3K?

I'd love to know the answers to these questions, particularly if it might help somebody else fighting this damned disease. I'd love to hear what a researcher has to say about someone being treated with Herceptin alone from the time of first diagnosis. I know they have precious little data with respect to someone in my Mom's position, as nobody would dare forego the standard treatment protocols in the interest of furthering clinical research, and I can't blame them.


I just have this knawing feeling that there is something going on here that somebody doing the research needs to know about, but I don't quite know who to contact. They would probably laugh me out of the office if I walked in with such questions anyway. And I dare not suggest to any scientist or medical person that God Almighty had a hand in my Mother's rather strange disease course...lol.
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Old 11-03-2006, 06:12 PM   #2
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continued...

Well, that's the story. I thought it might offer some hope to somebody out there going through this mess to hear just how powerful Herceptin can be for some. God Bless the people at Genentech that developed this wonderful drug. And I wish the same good fortune to those at GSK who no doubt worked just as hard on Tykerb. I pray that Mom doesn't reach the point where she needs to turn to Tykerb for help. The question put to me by the oncologist now, is whether to resume giving Mom Herceptin. It sure is a break not schlepping up to the hospital every Friday to get her infusion. But will she remain cancer-free without it? If anybody wants to chime in on that one, please do. Like Ross Perot in his presidential debate years ago, "I'm all ears". I think I'll go have an eclair with Mom and ponder that question.


Greatfully yours,
Tom
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Old 11-03-2006, 06:35 PM   #3
eric
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Amazing and great news! Like you and many others, I would love to know what if anything did the trick. Maybe her onc can offer a suggestion. Anyway, I'm thrilled for both you and your mother. You deserve it, you're a special person, as I'm sure she is. ENJOY AND CELEBRATE!!!
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Old 11-03-2006, 06:38 PM   #4
StephN
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Thumbs up Gentle Love

Add your particular brand of loving care to your Mom's list of positives. YOU give her a reason to fight and for her body to continue to resist any cancer activity. You know that Herceptin stays in one's system for several months and this hold over effect has also been at work I am sure.

If her med onc will order more Herceptin, I would go for it. Even if it is for say 3 months. Many of us (myself included) are doing well on Herceptin after getting either the initial cancer or mets under control.

I have been praying that your Mom (I feel like she is Mom to all of us here!) is a responder. With the advantage that often in the older patient the cancer is not as aggressive, she probably has this also going for her.

Been waiting for these results and the news is wonderful! The suspicion that the hot spots on the last PET were from bumps or arthritis seems to have panned out. Enjoy those occasional eclairs and consider life good.
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"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.
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Old 11-03-2006, 07:23 PM   #5
kareneg
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Dear Tom,

I am truely happy for your mom! You are an amazing man and I hope and pray this horrible monster never ever returns. Enjoy several more eclair's with your mom. God bless you both.
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Love and Hope
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IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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Old 11-03-2006, 08:14 PM   #6
Sherryg683
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Tom, I am SOOO happy for your mom and for you. You are an angel to her and I'm sure all your help and concern has helped her tremendously. It has to be such a relief to have someone that you can turn all the worrying and question asking over to. You are an awesome son. I have also been cramming in the curcumin, grape seed extract, green tea pills and other stuff..so I am hoping that it will indeed help keep the cancer away. Give your mom a hug for me and tell her to enjoy her holidays..sherryg683
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Old 11-03-2006, 08:31 PM   #7
tousled1
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Tom

This is great news! Breast cancer is a deadly beast and I don't think anyone knows the why's or wherefor's of what makes one person have such a terrible struggle while others seem to just breeze through it. Your mother is extremely lucky to have such a loving son. I am sure that prayers have had a lot to do with your mom's results. I personally was delighted to hear the news especially since I too had such severe lymph node involvement. You have given me the encouragement that I needed to hear and at a great time. Now you can stop worrying for a while and relax. Do something nice just for yourself you surely do deserve it.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 11-03-2006, 08:43 PM   #8
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Tom, this is indeed incredible news! I am sure you want to scream for joy and yet you don't dare not knowing what is around the corner. I ask the same question with myself what is doing the trick here. We may never know! It is probably a little of everything. It is a great reward for you as you have worked very hard for your Mom and for her fighting this battle. Even though she has not done chemo, its still been a battle for her. May I asked why no conventional treatment? Was there a reason she couldn't do it, didn't want to which is a choice she has a right to. Herceptin certainly, has been a life saver for many and yet for many it isn't. For me I think it may have slowed my disease and perhaps, even kept it it localized but it did not clean it up. My oncologist is expecting the Tykerb to clean it up!!! If your Mom ever needs the Tykerb don't despair it is an easy drug to tolerate not at all like chemo. Certainly, worth keeping it as an option down the road. Now, that I have been off the Herceptin for two months I realize how much better I feel!!! Have lost nearly 15 pounds and so don't feel like I weigh 500 pounds. My feet and hands were not swellen so didn't see the need for meds to get rid of fluid. It was all at the waist!! Enough said, I am so excited for you and your Mom. Sending you both a big hug and enjoy that eclair!! Sandy
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Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 11-03-2006, 09:22 PM   #9
Bev
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Thrilled to hear all is well. Don't know about more H. I guess results in 07 will tell us more.

I'm waiting on scans done this week. I'm assuming no news is good news, as with the original dx, you had the phone call w/in
24 hrs.

You, like Gina, should pursue a medical career. You are such a positive force. Thanks for good news. BB
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Old 11-04-2006, 08:47 AM   #10
Lolly
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Tom, this is great news, and I'm so happy for you and Mom.

I think there is still so much that's unknown about the characteristics of each individual's cancer, and how life style/diet affect development of that cancer, or lack thereof as in your Mom's case!

You know that old saying "If it ain't broke don't fix it", so what you're doing must be good....Keep Up The Good Work!!!

<3 Lolly
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Old 11-04-2006, 10:01 AM   #11
Kaye
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Tom, so very glad to hear about your mom. Thanks for sharing. If only 'they' researchers knew what worked best for each. The alternatives your mom was using are ones that are being researched for the cancer pathways they presumably block.
What about of curcumin was/is your mom taking and how often? How much green tea does she drink? How about the Inoxitol hexaphosphate (sp?)
It wasn't too long ago that I read something about one of the common forms of childhood leukemia that was 95% fatal 20+ years ago. Those stats are supposedly now reversed--only 5% fatal and 20% 'curable' or able to go into remission (not sure which, although I think I read 'curable').
What allowed this involved the use of already existing treatments that were given in different ways--such that the different pathways were blocked. Perhaps this may be what happened with your mom?
I hope that this positive path continues for your mom. Wishing her all the best!
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