My very good friend "Danish-patient" passed away after +15 years of battle. He was an outstanding person with a high level of knowledge regarding PCa and he generously helped many member patients in the danish facebook group "The Young Prostate Guys" (for PCa patients diagnosed under 60 years). Also, he made a short film and also was a big part of establishing the sister group here "Prostate Cancer under 60" where his is/was moderator.
In Denmark, he fought for taking this mean disease much more serious and to think much more out-of-the-box to get more aggressive treatments. I believe he still has the record in Denmark with the most Lu-177 (now pluvicto) treatments self-paid in Austria (11 times !!!), radiation therapy in Finland (also self-paid) and scannings in Norway... which was the reason that he got more years to live since he was more or less given up by the Danish health system back then (6-8 years ago). He also wrote about this in national danish medical magazines and lastly he took initiative (where I also participated) to get meetings with politicians, top PCa doctors, national medical administrations etc. in the Danish Parliament. It is an honor for me to continue this work in his memory......
If you are interested in watching the film he made, there's a link below (it's in Danish with English subtitles). Furhtermore, I a link to an interview he did with the US Prostate Cancer Foundation concerning the film:
Film: Prostate Cancer Under 60 -Young Faces Of Prostate Cancer
Thank you.It’s a wonderful video. My son was diagnosed last August just before his 50th birthday so the film really hits home. I was unable to access the interview. The link brought me to the PCF page. Thank you again.
Yes, the link is to the PCF page where you can read about the reason that Keld made the film - also there is a link to the film there... For info - I am also participating in it (I am Jesper)
My son said that when he goes for his radiation treatment all he seese are old men. I joined several Facebook Prostate groups early on and there are many young men afflicted. One couple was only 37!It seems to be showing up in younger and younger men. I thought maybe it was the American high fat high cholesterol diet but European and British men are afflicted😢 too.
We also have a lot of GMO foods and meats with hormones added. My son has decided to eat vegan and has lost 10-15 pounds.He has definitely been a red meat lover but no more.
That's great. I gained 15lbs !! A thing which could be worth trying for your son is to get a gene test. I have mutation in BRCA-2 and that gives possibilities for PARP-inhibitors such as Olaparib (Lynparza) etc... Also, if that is the case, the rest of the familiy could benefit from this knowlegde (8 in my family have now been tested and 7 positive)...
They completed a genetics test, but it’s not genetic even though we have it in our family! Very surprising!
However, I do wish they had done a genomics test because my son’s numbers started out as 3+3 = 6 and 3+4 = 7, PSA 4, and after the surgery we waited two months for the PSA test and we found that his PSA had jumped from 4 to 20! Not 2 but 20. His new numbers are 4+3=7 plus tertiary pattern 5! Tertiary pattern 5 is more indicative of biochemical relapse, and I have had a hard time finding people who have dealt with it, so I am hoping that someone here can give me some words of wisdom, because there wasn’t much on the Facebook groups about it.
Once the PSA test came back as 20, they performed a PSMA Pet scan, and it showed that he had very small cancers in a couple of pelvic lymph nodes, and they started him on Firmagon and he had a bad reaction that was very painful so they switched him to Lupron then added Zytiga and prednisone and six weeks of radiation. Monday is his last day of radiation and then we have to wait three months for the PSA test and hope that it’s gone down…. the tertiary 5 is what has me really worried and I’m hoping somebody here will have some information about what their experiences with it have been. It’s really difficult to find information on tertiary 5 from people who have it and all that’s out there on Google are the studies.
Again I really appreciate your movie. It helps me accept what my son is having to go through and that there are others just like him. As a parent, I can say it’s honestly a terrible blow to a parent too. How did your parents handle the news and deal with it? My reaction has not been good but I have helped with all the research. None of my friends and family are dealing with prostate cancer so I use the support groups but most women are wives or partners not mothers but have welcomed my concerns.
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Health Unlocked member passes away
Update on my Dad: 4 months since last PSA and Provenge
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