OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis ([email protected]).
DEEP DIVE ON TUMORS - GENETIC MUTATIONS ETC - ANYONE ELSE? NF1, TP53 and CDK4?
A bit of good news for me today - There are three mutations in my ovarian cancer tumors that might be targeted for future treatments. The treatments are not standard of care so to get these drugs, I'd have to ask for compassionate grounds or be part of a trial. But I have a mutation in the NF1 gene - MTOR inhibitors may block the mutation - and a mutation in the CDK 4 gene - CDK 4 amplification inhibitors may block the mutation and the P53 gene may or may not have targeted treatments available. None of this would be activated until the Avastin/Taxol treatment combo I'm on stops working - I expect these targeted drugs cost many thousands . They may be available in the US now at a huge expense. For now, I am to stay with Avastin and Taxol. Knowing that these mutations exist is hugely helpful in my own research and I am going to look for supplements and off-label drugs that have shown promise in blocking these pathways. I've been reading a lot about things that might work on these tumor pathways so this is hugely helpful in my studies. I will take this as a win because some of my friends got a 'nothing found' result and I wasn't expecting much. If any of you have any of these mutations in your disease, please let me know how the information has been used in your treatment and what has transpired. Thanks.