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Dr. Plotkin, MGH - 11/30/11 - Meeting Sum Up
Organized by NF Network, Dr. Plotkin, of Mass General Hospital did yet another Webinar with the NF2 community. Chemotherapy and an array of treatments were discussed.
- Importance of Treatments at NF2 Clinics
- Chemotherapy and Other Treatments Nutrition and Exercise
- Conclusion
- Watch the Complete NF2 webinar with Dr. Scott Plotkin
Importance of Treatments at NF2 Clinics
Chemotherapy and Other Treatments
Avastin - A question was asked about the FDA and Avastin. He admitted that people are having a hard time getting approval for the treatment, but said it was due to the high cost of the treatments. Personally I think this issue is a simple matter of insurance companies, who are constantly looking for an excuse to not pay for treatments and know about the FDA and Breast Cancer with Avastin, are simply using it as an escape.
Botanicals and Supplements like Boswellia (5 LOXIN), BIO30 (Caffeic Acid), Bio-Curcumin, Honocure (Honokiol), Resveratrol and Zyflamend do not have enough medical testing to know for certain how effective they are and if they really an be safely take in high doses for long periods of time, was Dr. Plotkin concern about us taking them, though the NF2 community has through an informal database collected information from quite a few of us who have received different levels of results over a period of years, but have not seen any real side effects other then occasional stomach discomfort. If you are taking any of these, your doctors should at least be aware of it.
Gene Therapy - I was very happy and shocked that Dr Plotkin said that in the next 10 years, we will start to see trials to address the Merlin Protein directly, in possible gene therapy treatments. This is very good news, but until then we have a variety of chemotherapy options that can be used to help control and shrink some of our NF2 tumors. - More on what was said on Gene Therapy
Nutrition and Exercise
Conclusion
Watch the Complete NF2 webinar with Dr. Scott Plotkin Video from NF Inc
Dr Plotkin made the point that we should be seeing doctors in complete clinics, where all of our NF2 treatments can be addressed. This is important since as a team, they'd work together and know what type of doctor and more specifically who to refer us to when we need to see another doctor that is a part of the clinic for various treatments we might need.
Chemotherapy is the current means of controlling tumors by the medical community, even if some of us are taking it upon ourselves to try what we believe are less invasive options like Botanicals and Supplements, since there is a limit on how long anyone can take any form of chemotherapy.
He did say nutrition is important for us, since we need to be healthier to deal with NF2 issues. He used the following example. Since we tend to have bad balance we need to make sure we do what we can to have strong bones so when we do fall, fewer bones brake in the process, so watching bone density is particularly important for us. Not because our bones are more fragile then non-NF2 individuals, but just because of how often we tend to fall.
Our options on treatments are expanding and is something we should be following up on. Additional treatment types were mentioned can be found in the video shared of the Webinar.
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