I just wanted to let everyone know that I’m still alive but very busy. Additionally, I was also getting a little annoyed about all the theorizing and partial animosities going around on this forum. Both are linked (“belief wars”) and both are not helpful. Anyway, I just wanted to give you a quick update on what is going on in the background:
Research Project Status
Project working name: 1. AR expression in penile tissue
Objective: Determine if we have normal AR levels in penile tissue
Status: Pilot is completed, project is being expanded with additional patients
Results: We found significant results (can’t detail because data is still unpublished)
Next steps: Recruit another 4 patients to increase sample size and statistical significance (in progress)
Publication: Q3/Q4 time frame
Remarks: We could use another 1-2 volunteers for completing the study. If you live in Europe, have penile insensitivity and are interested, please contact me via pm.
Project working name: 2. Full genome gene expression in penile tissue
Objective: Determine gene expression profile at a full genome level and identify potentially deregulated pathways
Status: Team is being finalized, protocol is in progress
Next steps: Do pilot with biopsies from additional patients form project #1 (see above)
Remarks: If pilot yields significant data, we will launch full study as soon as we have funding
Project working name: 3. Genetics study
Objective: Find genetic markers which predict susceptibility for PFS
Funding: partially secured
Status: data analysis in progress
Results: first findings are available (can’t disclose due to publication status)
Next steps: complete analysis and write paper
Project working name: 4. Effect of PFS on neurosteroids
Objective: Determine neurosteroid levels of affected patients
Funding: partially secured
Status: pilot in progress
Results: very significant findings (can’t disclose due to publication status)
Next steps: complete pilot and increase size of study
Remarks: We expect to complete pilot in June. If all goes well, we will expand study and this will require further patients. PM me if you live in Europe and are interested in participating.
Project working name: 5. Study of epigenetic effects involved in PFS
Objective: Understand mechanisms of persistency related to PFS with a focus on epigentics
Status: Study protocol design
Next steps: finish protocol, secure funding and start patient recruitment (target: Q3)
Publication: target- approx. 12 months from study begin
Project working name: 6. Proteomic study
Objective: Verify quantity and function of specific proteins encoded by androgen responsive genes (ARG’s)
Status: planning phase
Next steps: determine team, secure funding and start protocol design
As you can see, there is A LOT going on. Unfortunately scientific research doesn’t move as fast as we would all like. The fact that we are running this whole show with practically no funds up to now doesn’t make things easier either. Because of this, we are very much dependent on donation of time and good will of the involved scientists/people. This partially is also the reason why things are not moving along too fast.
Please respect that the involved people have full time jobs next to all of this, family and a life besides PFS and are doing the best with what is at their disposal. I am also sorry that I am not very responsive to pm’s lately. On top of everything, I have even taken over the project lead of one of the above research projects, and I really have to focus my time. All I can say is that things are moving in the right direction at an accelerating pace. The results we have gotten so far are confirming that we are moving in the right direction and that we are looking at the right things. For this reason, we will continue down this track.
I am pretty sure that we will know a lot more than we do now by this time next year (and even before). Please understand though, that until we have a clearer picture of what is going on at the molecular level, there is no point in asking me about therapeutic approaches, because any answer would just be pure speculation. I am saying this, because I get a lot of pm’s about this type of question. I also understand that not having an answer regarding therapies is frustrating, but the reality is that we have to take it one step at a time. When the time does come, however, we increasingly are having the right specialists in our scientific network to be able to evaluate cutting edge therapeutic approaches. Again, like I have said many times in the past: We are not promising a cure or anything else. We are just doing our best to advance the science and understanding related to this problem. I strongly believe that we need to fully understand this problem to have a better chance at treating it.
As always, hang in there.