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Journals

14 YRS SINCE MY BROTHER PASSED AWAY...

sonia40
  • By sonia40 · Posted November 3, 2009
  • 13 replies
  • Hello all the wonderful ladies and gents on this wonderful site.... Today is a sad day for me....today is my brothers anniversary....he passed away exactly 14yrs ago of pacreatic cancer..he was only 28yrs ...

no new nasties

diaryofageneticdefec
  • By diaryofageneticdefec · Posted November 3, 2009
  • 3 replies
  • Just wanted to share the good news that my annual review said, that i can come back in a year. whoo hoo ...

Just getting started..

Nannysgirl28
  • By Nannysgirl28 · Posted November 2, 2009
  • 1 reply
  • We are now in what you would call the "down period" of my grandmother's chemo treatments. She is actually taking them very well. Getting around on her own and eating well. We begin 3 more chemo treatments ...

Off we go again!!

BriannaB
  • By BriannaB · Posted October 29, 2009
  • 3 replies
  • We just got back from my husbands appointment with the neurosurgeon, and yes he is going to have another brain surgery sometime within the next 6 months... he wants it to get a little bigger. Anyways ...

Inspire members featured

Brian
  • By Brian · Posted October 28, 2009
  • 29 replies
  • Today Massachusetts General Hospital's Proto Magazine published a wonderful profile of nine Inspire members. Each of these stories underscores what we all know to be true -- that Inspire is a special ...

RENAL ANGIOLIPOMA ANYONE???....

sonia40
  • By sonia40 · Posted October 26, 2009
  • 10 replies
  • Hello everyone..... as you all know me for those people who are following my posts....i have been told that i have a 5cm Renal angiolipoma on my right kidney....(have not had a biopsy as yet)...i also ...

A CYST ON MY OVARY....

sonia40
  • By sonia40 · Posted October 24, 2009
  • 13 replies
  • Hello everybody.... for those wonderful people who are keeping up with my posts...(LOL)...im just wondering if anyone can claryify this confusing situation....i was diagnosed with CIN1/HPV...so back in ...

HOPE ANYONE CAN HELP ME...

sonia40
  • By sonia40 · Posted October 23, 2009
  • 8 replies
  • Hello all once again as i mentioned before i am scheduled for my app in december..(re partial nephrectomy)....i just have a few symptoms that im dealing with and thought which better place to ask than ...

Positive for VHL

BriannaB
  • By BriannaB · Posted October 22, 2009
  • 2 replies
  • Right now in my family we have 5 kids that had to be tested for the VHL disease. So far 3 have come back. 2 are free and clear, but today we found out my neice is potitive for VHL. We are still awaiting ...

FINALLY GOT AN APP WITH A HOSPITAL....

sonia40
  • By sonia40 · Posted October 21, 2009
  • 10 replies
  • Hello all i am soooo excited i just had to let everyone know the wonderful news...today i received a letter from 1 of the hospitals that i was on the waiting list regarding my kidney tumor....i have an ...

DCLG meeting

joyceg98
  • By joyceg98 · Posted October 20, 2009
  • 0 replies
  • I'm back from Europe, now in Washington at the NCI Director's Consumer Liaison Group meeting (DCLG) -- NCI is the National Cancer Institute (US). The meetings are open, and are being webcast if you are ...

20 mile walk, 5 year survivor, Life Moves on

MariaKaminski
  • By MariaKaminski · Posted October 19, 2009
  • 0 replies
  • I just completed my second annual 20 mile walk for breast cancer awareness. I am, just this year, a five year survivor and off all chemo. Now it's on with the show as they say, or as I would say, life ...

WENT TO THE ER.....

sonia40
  • By sonia40 · Posted October 18, 2009
  • 21 replies
  • Hello to all you wonderful people and thankyou for responding my post and offering wonderful advice....as i mentioned in my post a couple of days earlier...my right kidney has been hurting that no amount ...

MY KIDNEY HURTS SO MUCH....

sonia40
  • By sonia40 · Posted October 16, 2009
  • 6 replies
  • Hello all for any of you wonderful people who have read my posts in the past will know by know bout my kidney tumor (angiolypoma)...as i mentioned before it was only found by accident through an MRI....so ...

Renal Cell Carcinoma

mll
  • By mll · Posted October 15, 2009
  • 0 replies
  • Subject: renal cell carcinoma patients Hello, By way of introduction, my name is Lauren Haddaway and I work with a company called Snow and Associates. We believe that authentic human voices are the best ...

Genetic Alliance Member

mll
  • By mll · Posted October 15, 2009
  • 0 replies
  • From: "AnneMadeo" Date: Wed, 14 Oct 2009 12:06:59 To: Genetic Alliance Member Email List Subject: [memberforum] NIH research into experiences of parents with a child who is undiagnosed The National Human ...

UPDATE ON MY UPCOMING SURGERIES

sonia40
  • By sonia40 · Posted October 13, 2009
  • 6 replies
  • Hello all well its been a while since ive been on this site...mainly because ive been so busy moving home..finally settled....for those wonderful and caring people who have been reading my posts i just ...

Visit to Netherlands

joyceg98
  • By joyceg98 · Posted October 12, 2009
  • 0 replies
  • Sunday and Monday I have met with a series of physicians here in the Netherlands, talking about how VHL is managed here, and learning from their experiences. In the Netherlands there are two primary centers ...

Wishing you a good outcome

MaryP
  • By MaryP · Posted October 11, 2009
  • 2 replies
  • Like many of you, I am a sandwich VHL patient. My mother had the disease, I have it, and my daughter also has VHL. After so many tumors, and so many surgeries, I wondered if in some way I was "allowing ...

Netherlands VHL meeting

joyceg98
  • By joyceg98 · Posted October 11, 2009
  • 2 replies
  • I flew to Europe on Thursday night, arriving Friday morning in Brussels, where I was met by a friend of Chris Hendrickx, the chairperson for Belgium. I stayed with Chris and her husband near Antwerp for ...

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