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post #1 of 19 Old Apr 2nd, 2006, 10:58 am Thread Starter
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Help needed with rare cancer

As those of you that have met us know, we have recently moved to Puerto Rico. I have accepted a 3 year contract to be the parts and Service Director for the BMW Importer.

Just as we get settled in here we find out that our youngest daughter Erika 21, was diagnosed with Epithelioid Hemangioendothelioma (EHE). This type of cancer is very rare, only about 20 new cases are diagnosed in the US each year. Consequently information and case studies of this disease are very hard to find.

The reason I am posting this here is to see if anyone knows of others with the same condition, or of Doctors or Hospitals that have been involved in the treatment of EHE. In an effort to reach out to others Erika has started a web page at www.carepages.com her page is : Erika0925.

I you have have any information please post it on her web page or e-mail Emily at [email protected] We are all monotoring her site constantly.

We are encouraging her to go on with studies and work as normal as possible and we will do the same. At this point we are still planning to attent CCR.

Thanks for taking the time to read this, and please if you have any info please let us know.

Wolfgang

Wolfgang

K1200LT 1999 Champaign SOLD
R1100RS 1994 Teal SOLD
R1150RT 2003 Blue (Sold)
R1100RT 1997 Blue


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"Travel is fatal to prejudice, bigotry, and narrow-mindedness."
Mark Twain

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post #2 of 19 Old Apr 2nd, 2006, 5:41 pm
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Wolfgang,

I wish I had a cure to give to you. As a cancer survivor myself, I can only offer you prayers and my best wishes. Continue to reach to others wherever you can and you may just find that someone who has found an effective treatment. You must be your own advocate!

'07 - R1200RT Slippery Silver

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post #3 of 19 Old Apr 2nd, 2006, 5:49 pm
 
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Thumbs up Cancer

I am unaware of anyone with such cancer...But I do know the HEALER!~

I will pray and ask our God for guidance and wisdom as you search for answers. I am assured that He will give you peace where there seems to be none....I don't know where you are with God, but I do know; if you seek through prayer and the Word, you will find the answers you desire...

Praying........................................... .................................................. .................................................. .................................................. .................................................. ................Amen

Bob
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post #4 of 19 Old Apr 2nd, 2006, 6:01 pm
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Wolfgang. I wish that I could help; but, I cannot.

My thoughts are with all of you. My prayer is that you can find something to help.

Keep searching.
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post #5 of 19 Old Apr 2nd, 2006, 11:44 pm
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Google it?

Search Internet for the Cancer Hot Line.

Doug Holck
Lodi, CA
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post #6 of 19 Old Apr 3rd, 2006, 5:12 am
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Wolfgang You might check with Duke university medical center. Duke is rated #4 in cancer research in the US.I would guess MD Anderson is #1, they are in Houston, Tx.
Sorry I cant be of more help

NOGILLS2


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2003 K1200LTE "BEERBURNER" RIP 07/21/09
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post #7 of 19 Old Apr 3rd, 2006, 8:30 am
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Prayers inbound.. and research..

Howdy... I will do what I can to search. If you guys need a place to stay, we are 3-4 hours from Houston... not close, but the price is right =)

Prayers inbound... for Erika and your family.. may the Great Physician's healing hand touch Erika and those who will treat her.

...............
J.M.J...
Dcn Channing

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post #8 of 19 Old Apr 8th, 2006, 9:46 pm
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Fred hutch in Seattle

If you need a place to stay let me know
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post #9 of 19 Old Apr 9th, 2006, 8:07 am
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prayers

I do not know anything about cancer at all.

I will keep your family and especially your daughter in my prayers though.

I live within an hour of Atlanta and if you are traveling through and there is anything I can do to help you I am glad to do so.

[email protected]

Kip
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post #10 of 19 Old Apr 9th, 2006, 3:07 pm
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As one who has lost a loved one (wife) to cancer, I can only tell you that your worst fears will never come true and that my family will keep your family in all our thoughts and prayers.

We live within 30 minutes of Johns Hopkins Medical Center and University, if you should happen to find your way there. Call us. We would be glad to help with anything. Our door is always open.

Dave
Monkton, MD
and Pawleys Island, SC
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post #11 of 19 Old Apr 9th, 2006, 9:21 pm
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I know nothing but will pray specifically for your daughters complete recovery.

I have a son who is almost 21 and can just barely imagine you and your familiys mind set right now.

Trust in the Lord and pray for the best Doctors in the world to help your daughter.

Mike G
Northen Illinois Packer Fan
K1200lt 2002
LT Trunk Latch Maker
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post #12 of 19 Old Apr 10th, 2006, 12:17 am
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Very sorry to hear the negitive news. I would suggest that she contact a holistic center that has several centers around the nation. They have had good sucess. It is called Envita Natural Health centers. Here is the site. http://www.behealthyamerica.com/blog.htm

Good luck

Rob Asay
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post #13 of 19 Old Apr 10th, 2006, 8:44 am
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I'm very sorry to hear about your daughter. I can't even imagine what your family must be going through.

I believe that modern medicine is great when it comes to saving lives in Trauma situations like car wrecks and stuff like that, but where my health is concerned I don't trust any of them as far as I can throw them. Drug companies are not in the business of curing anything. They just want to sell you a little pill or a lot of little pills to control the symptoms for the rest of your life.

Anyway go to this web site and scroll down to the Cancer section and there is a lot of good information along with some other books that are mentioned that you may want to get. At the very least get your daughter off all junk food and processed foods and get her eating whole natural foods.

http://doctoryourself.com/index.html

Also this is a very good web site for alternative health care subjects.

http://www.naturalcures.com/


I hope that you are successful in finding a cure for your daughter.

Wayne Mann
05 Ocean Blue LT
Randleman NC
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post #14 of 19 Old Apr 10th, 2006, 8:46 am
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Quote:
Originally Posted by Wolfgang
We are encouraging her to go on with studies and work as normal as possible and we will do the same. At this point we are still planning to attent CCR.

Thanks for taking the time to read this, and please if you have any info please let us know.

Wolfgang
Y'all are in my prayers, Wolfgang. I'll ask my doc what she knows about it.

Blessings!
munson+

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post #15 of 19 Old Apr 11th, 2006, 12:48 pm
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Quote:
Originally Posted by Wolfgang
Just as we get settled in here we find out that our youngest daughter Erika 21, was diagnosed with Epithelioid Hemangioendothelioma (EHE).Wolfgang
Hi Emily, hi Wolfgang,

I'm so sorry to hear of your daughter's plight. I have just said a prayer for her to my Great Architect of the Universe. I hope that Erika can indeed live her normal day-to-day life. She'll cherish it all the more.

Blessings...

Miles of smiles of miles of smiles of...
The hardest thing to do on a K1200LT is riding it home.

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post #16 of 19 Old Apr 11th, 2006, 6:16 pm
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Possible Support

Ran a search and found numerous support group forums and registries related to this topic. One example: http://survivor-support.rare-cancer.org/forum/

There was another private registry that states they lists patients, hospitals, and physicians associated with this cancer in the US, CA, IT, and UK. Listed an email address to gain more information: [email protected].

Bob Morrow #4204
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post #17 of 19 Old Apr 12th, 2006, 7:39 am
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Quote:
Originally Posted by Wolfgang

Just as we get settled in here we find out that our youngest daughter Erika 21, was diagnosed with Epithelioid Hemangioendothelioma (EHE). This type of cancer is very rare, only about 20 new cases are diagnosed in the US each year. Consequently information and case studies of this disease are very hard to find.

The reason I am posting this here is to see if anyone knows of others with the same condition, or of Doctors or Hospitals that have been involved in the treatment of EHE. In an effort to reach out to others Erika has started a web page at www.carepages.com her page is : Erika0925.

I you have have any information please post it on her web page or e-mail Emily at [email protected] We are all monotoring her site constantly.

We are encouraging her to go on with studies and work as normal as possible and we will do the same. At this point we are still planning to attent CCR.

Thanks for taking the time to read this, and please if you have any info please let us know.

Wolfgang
Dang wolfgang, I can offer our prayers for your family and Daughter.


also I would contact Dr. Alvarez (sp?) shoot I cannot remember his first name now, but they practice in Tijuana some unorthodox cancer treatments that actually work,

I have the information here someplace but I am POSITIVE it is packed up and won't be fouind until we get moved, they have a full cancer treatment center there just over the border, we found out about them when a friends wife had some cancer and was told she would not survive, they sent her there and after about a 3-6 month treatment she is still fine (over 10 years later)

he also wanted to treat my friends son but by the time we were able to get the information my friends son passed on.

that Doctor actually called my home personally

Alverez treatment facitily shoot what is the dang name of that place!

this might have been it, although I'm not sure that was his first name.

*Stella Maris Clinic, Gilberto Alvarez, M.D.
Treatment: detoxification, enzyme therapy, laetrile.
PO Box 435123, San Ysidro, California 92143, U.S.
1-800-662-1319
011-52-66-343444

just to let you know if you do a search on cancer survivors, you will find many that were diagnosed with all kids of difference cancers in the US and told there was no hope and were cured in Tijuana or so it's said, i only know of one personally they went there got cured after being told she had like 6 month's to live here in the US

Tom

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post #18 of 19 Old Apr 17th, 2006, 8:44 pm Thread Starter
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Still looking

I apologize for posting this for no other reason than moving this thread back to the top.

Erikas treatment was to start today...but now there is disagreement among the doctors. The only thing we know for sure is that there is just not nough data on this.

Her webpage with more info can be found at: www.carepages.com
Her page is erika0925 . You do have to become a member, but be assured you will NOT get junkmail.

Thanks to all of you who have offered help and prayers.

Wolfgang and Emily Sander

Wolfgang

K1200LT 1999 Champaign SOLD
R1100RS 1994 Teal SOLD
R1150RT 2003 Blue (Sold)
R1100RT 1997 Blue


Pest, Budapest Hungary

"Travel is fatal to prejudice, bigotry, and narrow-mindedness."
Mark Twain

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post #19 of 19 Old Sep 10th, 2006, 8:19 pm
 
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Help with rare cancer.

My prayers are with your family!
I would be glad to send you $100. to help off set your families expenses!
Send me a PM with your address.

Phil D.
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