Discuss your experiences with medical treatments.
- By StillKickin · Posted November 14, 2008
- 0 replies
- Any Info on thalidomide, temozolomide, or Auastin (bevacizumab) Chemo Drugs being used for treating kidney and spine tumors ...
- By diane1805 · New reply November 11, 2008
- 9 replies
- I just want to share my experience with you all. It started three years ago when i read an article on the internet about cannibas , stating that it was responsible for shrinking tumors in , it particulary ...
- By Sty · New reply November 10, 2008
- 14 replies
- I have two tumors that have grown significantly over the last year. That's the first time they've changed in size in over 10 years. I don't know which route to take and would like some insight from as ...
- By Cyclops · New reply November 10, 2008
- 17 replies
- Radiofrequency Catheter Ablation. I think thats how is spelt.....I am due to meet a Doctor in a few weeks to discuss this type of surgery for some VHL kidney tumors. I have read a little bit about it ...
- By gale · New reply November 10, 2008
- 14 replies
- When we had the VHL conference in Orlando, I talked a little what works for me and what I'm bothered by. Oils being one. I was asked after the conference a little more information on the oils that I was ...
- By Kar · Posted October 13, 2008
- 0 replies
- hello ...
- By TJ7334 · New reply September 18, 2008
- 8 replies
- What has been suggested for VHL patients with neuropathic pain, especially related to spinal tumors? What has worked and what hasn't? Does anyone have comments on the Laser Spine Institute in Tampa? They ...
- By joyceg98 · New reply August 12, 2008
- 5 replies
- Has anyone had a "coral implant" after having an eye removed? There is a woman in Canada who is having difficulty with hers, and I wondered who else might have had experience with them. Thank you, Joyce ...
- By joyceg98 · Posted August 6, 2008
- 0 replies
- Has anyone had gentamycin treatments for an ELST? If you would be willing to speak with this member, please send me an e-mail to director@vhl.org. Thank you! Tom's query: Now 18 months post surgery for ...
- By Hermvr · New reply July 25, 2008
- 10 replies
- Hi there, I have been diagnosed with VHL in 1999. It was first noted due to bad eye sight. After a number attempts of laser, that was not successful, the doctor decided to try and cut off the blood flow ...
- By MichelleC · New reply June 12, 2008
- 7 replies
- Does anyone have experience with supplements such as vitamins or herbs that have slowed or shrunk tumors? I have a friend whose daughter takes Beta Glucan and her tumor has decreased in size, which reduced ...
- By joyceg98 · Posted May 6, 2008
- 0 replies
- On Saturday morning, May 31, Nancy Roach and Mike Katz are helping to convene a couple of focus groups of patient advocates at the 2008 American Society of Clinical Oncology (ASCO) meeting in Chicago ...
- By orangebud · New reply March 2, 2008
- 4 replies
- Greetings everyone: If you belive in luck and have had little hope to keep your kidney(s) then there is a light at the end of the tunnel. I do not want to over sell this program, but if you quallify then ...
- By djay41 · New reply February 25, 2008
- 8 replies
- Good morning all, Well my friends surgery has been completed it took 13 hours on the table, and they still were not able to remove them all, everything is going well, he has been moved from the hospital ...
- By jeanmarie · New reply January 31, 2008
- 7 replies
- in 1999 i had a partial nephrectomy on my right kidney and took me a long time to recover because my incision i had 22 stitches i could not bend i could not sit for a long time and slept on my left side ...
- By dobi · New reply October 26, 2007
- 1 reply
- Hi I was diagnosed when I was 15, it comes from my grandfather on my mothers side. My mom passed away from it in 1966, she was actually diagnosed with pancreatic cancer, it was actually the vhl that caused ...
- By Myway · New reply October 26, 2007
- 9 replies
- Hi! Just a simple question - has anybody had or thought about having SRS on a spinal lesion? Is it even possible? Ok that's two questions!! My son who is 20yrs has had two lots of SRS for brain tumours ...
- By bnmanninen · New reply September 25, 2007
- 2 replies
- My husband DJ had one kidney removed in 2003 shortly after he was diagnosed with VHL . the kidney was 90% tumor and functioning OK but they removed it. Now they are looking at removing the other kidney ...
- By Paco · Posted September 25, 2007
- 0 replies
- Hi everybody! I'm Paco Valero from Spain. You can read something from me in the Metastasic Disorder discussion. Now another Spanish boy has metastasic Pheochromocytoma disorder. We are worried because ...
- By joyceg98 · Posted September 2, 2007
- 0 replies
- Have you heard anything about hybaric oxygen therapy? Have you had this treatment? For what issue? Did it help? We have no experience with this therapy, though it has come up multiple times as a suggestion ...
