Hello Mate it was really nice to catch up with you at work this Tues, I’ve known Neil for almost 30 yrs I was very Interested in Neil explaining his treatment in such detail, this must be very reassuring for any starting their prostate Treatment journey, as I had a scare myself 2 yrs ago was and referred to a specialist, Big Kudos to you Neil for you documenting and explaining you personal experience for others to follow and answer Some nagging question. Best wishes to you through your current treatment and getting the all clear. Best regards Holtman.
cheers Holtman, day 14 done only 6 to go. Am just trying to help others out there who have upcoming treatment planned. There's a bit of everything on the channel. Cheers mate
I too had 20 fractions. I had a pre scan and they tattooed me. Just three dots. One on each hip and one on my tummy and gave me a pack of enamas. It’s a minimum 1 hour drive, 40 miles. The RT dept have dedicated parking for patients at the back of the unit. They asked us to be there 1 hour before your appointment. The unit is very nice, comfy chairs. I went in and went to the toilet. They told you to use the enama to empty your bowels, then 30 mins before your appointment drink the bottle of water. They gave us one to fill about 300ml. I duly followed the instructions. They called me in about on time. No obvious side effects except one. In the second week I was feeling queasy, had diarrhoea for most of the rest of the day, picking up in the evening and what I’d call a windy tummy. Why I asked my self? Then toward the end of the second week I had to ask for more enamas. They gave me more but in this box (they were little tubes you squirted up your bum), a few were different so I looked at them. They had the ingredients prominently displayed of which one was Sodium Lauryl Sulphate! What! This is an industrial detergent well known for causing irritation. In me, I’m allergic to it. Next day I spoke to my RT team and queried this. I do tent to go to the toilet after breakfast regularly so they said I could stop the enamas. After a couple of days I was fine. I do find it curious the differences between hospitals and their procedures. As for PSA testing same. My tests come back to 2 decimal places. I was
Many thanks Phil for your detailed comment. Sodium sulphate!!! explains a lot. cheers NHS.Ii'm waiting for my blood test in 10 days time then the big result. If you watched my last video it did say i done a private test in Latvia at start of June and looks like it was coming down nicely from the dreaded 0.2. was 0.09 after 2.5 weeks so its always 8 weeks after last radiation when you get your final results. Cheers mate for taking the time to reply and watch
So sorry such a young man of only 53 has to go thru this. I guess I was fortunate that I was 74 when I had mine removed and am doing just fine so far. Good luck in your journey.
So much thanks mate again for your support and donation. Really dont expect anything like this. Please know that every penny will go to help a local cancer centre place in a town near to where I live. People like yourself makes such a world of difference to them. Appreciate everything mate means so much
Thanks Niel, very helpful. I am waiting to be called for radiation in May and have been apprehensive. This has helped me a lot. Look forward to further updates.
All the very best mate for the radiation. Believe me you don't feel nothing, just the hassle with the fluid intake and what you eat on the day. I'm on number 7 today. Hopefully they won't cancel like last Friday. Many thanks for watching and the complimentary comments. May I ask where you are from.
Now booked for next Wednesday for the planning scan with treatment starting June - 33 sessions. Getting there bothers me more than the treatment - 50 mile round trip every day. Thanks again for your channel.
Forgot to mention one great thing - Colchester have their own radiation car park and I have a code for the barrier and it's free parking. That takes a lot of the stress away.
Neil, great video -- THANK YOU. Here in the US I had 39 fractions of 1.8 Gray (Gy) each for a total of 70.2 Gy for my 1st recurrence. I also took 6 months of Relugolix (Orgovyx) as Androgen Deprivation Therapy (ADT) which started 2 months before the IMRT by a Varian iX machine. Because I'm incontinent after my prostatectomy, I had to use a Wiesner Clamp to have a full bladder. I used Glycerine suppositories at home before each treatment. I took Simethacone orally to not have any intestinal gas. I'm now on Relugolix and Enzalutamide (Xtandi) for my 2nd recurrence. I was hospitalized for pancytopenia about 6 weeks ago, which may have been from pomegranate extract (Ellagic acid) capsules -- so be careful taking any supplements.
Blimey David such a journey your going through mate, hats off to you buddy. I will ask what dosage of each fraction is tomorrow. Let's hope my peppermint capsules works. Thanks again for watching mate really appreciate it.
@@neildavidson7768 Neil, it certainly has been a "journey" with a lot of twists and turns. The higher the total dose (fraction dose times number of fractions) seems to be important for successful salvage radiation treatment -- which is a second chance of a cure of the prostate cancer. In my particular case, I asked for the total dose to be over 70 Gy. However, because of several genetic mutations in the prostate (removed in September 2020), it seems that few standard treatments will do much to slow it down. NOTE: my Medical Oncologist got the Next Generation Sequencing genetic test on the prostatectomy specimen in October 2023 as that test was not commercially available/FDA approved in 2020 when my prostatectomy was done. So, we're all individuals and our journeys will follow our own roads. Good luck to you, and to all of us.
John that's so very kind mate. I never ask for nothing but please know that any money I receive will go straight to a local cancer care place in a small town close to me. These centres allow anybody to go for a coffee biscuits and more importantly someone to talk to. I found out when I got diagnosed that talking it out was the most important thing. These centres are not government funded but self funding and all donations are gratefully received. The money i get for them won't change the world but it will keep them in tea coffee and biscuits for a week or 2. Again so many thanks again.
Thanks for making the videos. I know we are all different but I’m in the same boat as you in many ways and about to be referred for recurrent radiation so this video really helped prepare me for what to expect and will buy peppermint in advance - very grateful! A big part of dealing with this is the mental side - you tell yourself many narratives and I’m glad it helps to discuss it. Very best wishes with your treatment and thanks again.
I finish radiotherapy tomorrow, I can have a little bit of respite as my next blood test will be in 6 months time. My PSA was 0.992 just before starting RT, have been on the dreaded ADT treatment prior to RT. I'm seriously considering stopping ADT treatment after 6 months as I am begining to worry about diabetes and my heart due to the weight I have gained. In addition my feet have started to swell up on occasion. Amusing about the wind, peppermint didn't work for me, RT itself causes some of the wind problems. Luckily I have not had to use the box of enemas I was given before my RT, my appointments have been around 8am and as soon as I've had a cup of coffee I'm off to the bathroom. For context I'm Gleason 7 (4+3) T3a NO with bulging prostate. My brother has his prostate removed in a couple of weeks and my other two brothers are almost sure to follow due to high PSAs, keep it in the family ROFL. By the way, I'm peeing a lot more at night and a little loose bowel wise since starting RT. Good luck to us all.
Many thanks for watching again from the Philippines. All is going well so far. I will let you know if the peppermint works for me. I Only bought yesterday. Hopefully it will. Don't want waste anymore unnecessary days up the hospital. I'm hoping to video 1 session but need clearance from the authorities 1st. Many thanks again mate
Just woke here in UK to see such a generous donation. So many thx. Ure kind donation will go to the small cancer care unit here in Norfolk. So vital for the community and the work the volunteers do is immense. So much thx again really appreciate it.
Hello Mate it was really nice to catch up with you at work this Tues, I’ve known Neil for almost 30 yrs I was very
Interested in Neil explaining his treatment in such detail, this must be very reassuring for any starting their prostate
Treatment journey, as I had a scare myself 2 yrs ago was and referred to a specialist,
Big Kudos to you Neil for you documenting and explaining you personal experience for others to follow and answer
Some nagging question. Best wishes to you through your current treatment and getting the all clear.
Best regards Holtman.
cheers Holtman, day 14 done only 6 to go. Am just trying to help others out there who have upcoming treatment planned. There's a bit of everything on the channel. Cheers mate
I too had 20 fractions. I had a pre scan and they tattooed me. Just three dots. One on each hip and one on my tummy and gave me a pack of enamas. It’s a minimum 1 hour drive, 40 miles. The RT dept have dedicated parking for patients at the back of the unit. They asked us to be there 1 hour before your appointment. The unit is very nice, comfy chairs. I went in and went to the toilet. They told you to use the enama to empty your bowels, then 30 mins before your appointment drink the bottle of water. They gave us one to fill about 300ml. I duly followed the instructions. They called me in about on time. No obvious side effects except one. In the second week I was feeling queasy, had diarrhoea for most of the rest of the day, picking up in the evening and what I’d call a windy tummy. Why I asked my self? Then toward the end of the second week I had to ask for more enamas. They gave me more but in this box (they were little tubes you squirted up your bum), a few were different so I looked at them. They had the ingredients prominently displayed of which one was Sodium Lauryl Sulphate! What! This is an industrial detergent well known for causing irritation. In me, I’m allergic to it. Next day I spoke to my RT team and queried this. I do tent to go to the toilet after breakfast regularly so they said I could stop the enamas. After a couple of days I was fine. I do find it curious the differences between hospitals and their procedures. As for PSA testing same. My tests come back to 2 decimal places. I was
Many thanks Phil for your detailed comment. Sodium sulphate!!! explains a lot. cheers NHS.Ii'm waiting for my blood test in 10 days time then the big result. If you watched my last video it did say i done a private test in Latvia at start of June and looks like it was coming down nicely from the dreaded 0.2. was 0.09 after 2.5 weeks so its always 8 weeks after last radiation when you get your final results. Cheers mate for taking the time to reply and watch
Neil wishes you all the best with the upcoming treatment. Let’s hope this kick it into action for a clear recovery
cheers Dave appreciate it mate
So informative Boss 👍 hope you’re doing ok x
Well done....
Cheers Steve for watching mate, appreciate it
Stay strong Neil and thoughts and prayers are with you.Alan and Anne that beer will taste even better !!!
Yes mate I can taste it right now.
All the very BEST for you!
Cheers mate appreciate it
Another great video Neil keep up the good work and good luck mate
Cheers mate
So sorry such a young man of only 53 has to go thru this. I guess I was fortunate that I was 74 when I had mine removed and am doing just fine so far. Good luck in your journey.
Dennis no problem to me mate. I just have to take whatever comes mate
Thanks!
So much thanks mate again for your support and donation. Really dont expect anything like this. Please know that every penny will go to help a local cancer centre place in a town near to where I live. People like yourself makes such a world of difference to them. Appreciate everything mate means so much
Thanks for the update Neil, best wishes with the rest of your treatment!
Zelda as always many thanks for your support.
Amazing description of the entire process. Best of luck to you fellow.
I'm hoping to be allowed to film 1 fraction very soon, hopefully will be allowed. Thx so much for watching and donating.
Thanks for keeping us updated Neil. Stay off onions and curry!
Yes good advice Tricia
Thanks Niel, very helpful. I am waiting to be called for radiation in May and have been apprehensive. This has helped me a lot. Look forward to further updates.
All the very best mate for the radiation. Believe me you don't feel nothing, just the hassle with the fluid intake and what you eat on the day. I'm on number 7 today. Hopefully they won't cancel like last Friday. Many thanks for watching and the complimentary comments. May I ask where you are from.
@@neildavidson7768 Yes Neil, Essex. Going to Colchester for the radiation. Best regards, Graham
Now booked for next Wednesday for the planning scan with treatment starting June - 33 sessions. Getting there bothers me more than the treatment - 50 mile round trip every day. Thanks again for your channel.
Forgot to mention one great thing - Colchester have their own radiation car park and I have a code for the barrier and it's free parking. That takes a lot of the stress away.
Neil, great video -- THANK YOU. Here in the US I had 39 fractions of 1.8 Gray (Gy) each for a total of 70.2 Gy for my 1st recurrence. I also took 6 months of Relugolix (Orgovyx) as Androgen Deprivation Therapy (ADT) which started 2 months before the IMRT by a Varian iX machine. Because I'm incontinent after my prostatectomy, I had to use a Wiesner Clamp to have a full bladder. I used Glycerine suppositories at home before each treatment. I took Simethacone orally to not have any intestinal gas. I'm now on Relugolix and Enzalutamide (Xtandi) for my 2nd recurrence. I was hospitalized for pancytopenia about 6 weeks ago, which may have been from pomegranate extract (Ellagic acid) capsules -- so be careful taking any supplements.
Blimey David such a journey your going through mate, hats off to you buddy. I will ask what dosage of each fraction is tomorrow. Let's hope my peppermint capsules works. Thanks again for watching mate really appreciate it.
@@neildavidson7768 Neil, it certainly has been a "journey" with a lot of twists and turns. The higher the total dose (fraction dose times number of fractions) seems to be important for successful salvage radiation treatment -- which is a second chance of a cure of the prostate cancer. In my particular case, I asked for the total dose to be over 70 Gy. However, because of several genetic mutations in the prostate (removed in September 2020), it seems that few standard treatments will do much to slow it down. NOTE: my Medical Oncologist got the Next Generation Sequencing genetic test on the prostatectomy specimen in October 2023 as that test was not commercially available/FDA approved in 2020 when my prostatectomy was done. So, we're all individuals and our journeys will follow our own roads. Good luck to you, and to all of us.
All the best on your journey Neil stay strong and thanks for sharing .
Wayne thanks as always for watching mate. All fine so far mate.
Great video Neil stay strong all the best wishes from John in Assie
Cheers John, thanks for watching. Hopefully they will allow me to video a session soon. Day 7 today. Cheers for your kind words.
Thinking of you, and always hoping for the best. Keep the faith, my friend.
Many thanks lol hope you're keeping OK over across the pond
Hang in there, brother. I'm right behind you here in the U.S.
Many thanks for your support mate.. I do appreciate all the comments I get. Thx for watching
Thanks
John that's so very kind mate. I never ask for nothing but please know that any money I receive will go straight to a local cancer care place in a small town close to me. These centres allow anybody to go for a coffee biscuits and more importantly someone to talk to. I found out when I got diagnosed that talking it out was the most important thing. These centres are not government funded but self funding and all donations are gratefully received. The money i get for them won't change the world but it will keep them in tea coffee and biscuits for a week or 2. Again so many thanks again.
Thanks for making the videos. I know we are all different but I’m in the same boat as you in many ways and about to be referred for recurrent radiation so this video really helped prepare me for what to expect and will buy peppermint in advance - very grateful! A big part of dealing with this is the mental side - you tell yourself many narratives and I’m glad it helps to discuss it. Very best wishes with your treatment and thanks again.
Good luck...rest is good...remember that when the radiation effects kick in.
Many thanks for the heads up, yes no doubt it will maybe this week or next. I'm ready for it. Thanks for the view mate.
Are you in Hannah Hauxwells living room??
Sorry you have to go through this, Neil. Yogurt might be good sustenance and easier on the bowel. Have they dismissed the spot on the kidney?
Yes mate the kidney issue came back as a Renal Cyst. So good news there. Thanks for watching mate
Cheers Ray for support
I finish radiotherapy tomorrow, I can have a little bit of respite as my next blood test will be in 6 months time. My PSA was 0.992 just before starting RT, have been on the dreaded ADT treatment prior to RT. I'm seriously considering stopping ADT treatment after 6 months as I am begining to worry about diabetes and my heart due to the weight I have gained. In addition my feet have started to swell up on occasion. Amusing about the wind, peppermint didn't work for me, RT itself causes some of the wind problems. Luckily I have not had to use the box of enemas I was given before my RT, my appointments have been around 8am and as soon as I've had a cup of coffee I'm off to the bathroom. For context I'm Gleason 7 (4+3) T3a NO with bulging prostate. My brother has his prostate removed in a couple of weeks and my other two brothers are almost sure to follow due to high PSAs, keep it in the family ROFL. By the way, I'm peeing a lot more at night and a little loose bowel wise since starting RT. Good luck to us all.
Many thanks for watching again from the Philippines. All is going well so far. I will let you know if the peppermint works for me. I Only bought yesterday. Hopefully it will. Don't want waste anymore unnecessary days up the hospital. I'm hoping to video 1 session but need clearance from the authorities 1st. Many thanks again mate
Thanks!
Just woke here in UK to see such a generous donation. So many thx. Ure kind donation will go to the small cancer care unit here in Norfolk. So vital for the community and the work the volunteers do is immense. So much thx again really appreciate it.