Blog/group email
🍁 US Phase 2 Hope Patients Families VHL Canada
Research into a cure and effective drugs provides tremendous symbolic hope. You’ve likely heard about the promising news of the latest Belzutifan Phase 2 clinical trial results. Based on an online search and feedback, from VHL Community peers in the US, Canada and the world, here are 2 examples of the issue. What does it mean to you? Thanks, Henry
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A life of Wait and See, punctuated by regular surveillance, manifestations, doctor’s appointments, and interventions, is the norm…. the VHL Alliance recently posted a series of polls in our secure on-line discussion group. The responses are below*:
If a Non-Surgical Treatment for VHL was Available, What Inconveniences/Side Effects Would You Be Willing to Accept?
Responses
- Oral treatment, i.e., pill or liquid: 85%
- Injections: 53%
- IV Infusions: 51%
- Minor side effects (Tiredness, Stomach issues, Headaches): 43%
Comments:
- In my opinion that these will be better than any surgery!
- After the issues I had with my last surgery, I would do anything to not have to have another surgery.
- Accessibility issues! Not sure if I would be willing to travel far distances to receive regular treatment/injections/infusions.
What Would a Non-Surgical Treatment for VHL Mean to You?
Responses
- More confidence knowing, I can make long-term plans and accomplish goals without constantly being interrupted by surgeries: 73%
- Would make going from my annual scans less scary frightening: 41%
- Not having to always look over my shoulder for next surgery: 39%
- Less chronic pain from repeated surgeries and longer recovery times: 23%
- Basic financial security and regular affordable to my VHL team: 11%
- Would allow me to finish school and advance my career uninterrupted by surgeries: 7%
Comment:
- Relief, if there are not serious side effects!
*Note
-from FDA/VHL Alliance Listening Discussion Handout, June 2020
-Number of respondents was not indicated
-Bolds and italics added
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“[This research] provides hope for patients with VHL disease; these are individuals who literally, in some cases, have had dozens of surgeries throughout their lives to help deal with their central nervous system (CNS), as well as renal and adrenal manifestations of the disease,” lead study author Eric Jonasch, MD, of The University of Texas MD Anderson Cancer Center, told OncLive in a recent interview. “[The results of this study] have brought joy to some of our patients; they’re finally seeing a light at the end of the tunnel. This has really been amazing and beautiful to see.”
- FDA Grants Breakthrough Status to MK-6482 for Select VHL Disease–Associated RCCJuly 29, 2020
italics and bolds added
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