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17 year old boy with EC stage IV with mets to liver

jpturn4's picture
jpturn4
Posts: 21
Joined: Feb 2011

Hi all,

 

My husband passed away in 2011 and I found this site to be so helpful in many ways, although I used to spend hours just looking for "hope", but the advice and tips were always welcome.

 

Today, I spoke to a mom of a 17 year old boy in Orlando FL, who has stage 4 with mets to his liver.  I don't need to tell any of you how he and his mom are feeling.  I am meeting with his mom soon and am a little out of touch with 2014 treatments etc.

 

Does anyone know if James Lucktich is the best surgeon in general opinon?  Also, Jaffar Ajani the best GI???

 

Also, is anyone has any stories of hope I can share with this family.

 

Thanks

 

Julie 

 

dfd24
Posts: 81
Joined: Mar 2011

hello,

i write this to every new person. make sure he gets tested for HER2 . if he is positive he needs herceptin in his treatment.  it is very favorable to be able to have herceptin treatment

we are in france and herceptin treatment is reserve for people who have metastatic disease in that it is not approved for people who don't have metastases.

can't write more at this point.have an appointment. i can call you for free if you like if you send me a phone number by private message.

my husband had a recurrence with a metastisi to his pleural membrane . it is now 4 years since diagnosis and two years since recurrence . he is still getting treatment but is feeling good.

all the best,

danièle

goty2001
Posts: 71
Joined: Jul 2012

Herceptin has reduced my tumor & mets (to liver) to an undetectable level - I had identical diagnosis 2 years ago

dwhite0002
Posts: 130
Joined: Jan 2010

Hi Julie,

I am 39 years old and was diagnosed at age 32. I have survived. Please share this with your friend.

 

David White

Hillsboro, OH

Dad'sfight
Posts: 155
Joined: Feb 2013

How frequent are you guys getting your Herceptin?

dfd24
Posts: 81
Joined: Mar 2011

hello,

My husband gets herceptin every three weeks.

Herceptin does not pass the blood brain barrier so one has to be careful about anything that might be brain related.

all the best,

danièle

 

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

Hello Julie,

I am so sorry about your friend's son.

My husband is a 2 year three months suvivor of EC.

Here are a few tips for you that perhaps will help you to understand some current things about EC.

HERCEPTIN will only be any good if the patient has the specific gene that it targets. It cannot be prescribed if you don't, so the first thing is to get tested for the gene. It is a breakthrough in chemo treatments.

James Lukeditch is a great surgeon has has more experience than most people, but there are other fab surgeons. Your friend can ask people here and she will get a wealth of information and help.

Our surgeon was in the UK, but the name James Lukeditch is whispered with reverence even the UK. Most of the people here are American, so they will be able to help you.

Usually,  surgeons will only operate on stage three EC and in general mets to the liver will mean that an operation is not possible. 

Having said this, the medical advancements in the past eight years are amazing and although EC is a horrible cancer, there are many stories from survivors and the treatments are getting better and beter.

I can't imagine having a child with cancer and I will pray for this young man and his Mum.

Most important is a diet rich in all good and fresh things, most especially antioxidents and vitamin c.

Try and keep the weight up with lots of small meals and exercise where possible.

I hope this helps. 

Love, hugs and prayers,

Marci

 

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