Same thing happened to me and I got a PSMA Pet scan, ask your oncologist about this, they found 3 very small metastatic sites that the normal pet scan didn't see.
Thanks Alan for the update . Really nice to see you and remaining positive. I’m in Spain and I can’t fault the treatment I have had so far for my PC. Hormone treatment, brachytherapy and beam radiation. I thought I was alone feeling down about not being able to get on with my life. It might be seasonal with everyone planning holidays but I too am feeling down at the moment. I look forward to your updates, which often make me smile. I’m feeling a bit alone after my wife left shortly before diagnosis. Friends are there but it’s not the same. Sorry about your friend.
I'm another one in the same boat. Diagnosed a couple of years ago after a routine blood test showed an elevated PSA of 66 which at the time meant nothing to me. Biopsy revealed stage 4 prostate cancer with a Gleason score of 9. Put on 3 monthly hormone injections followed by a course of radiotherapy. PSA down to 2 and thought, great ,I've cracked it. No. PSA started to rise so told I needed 10 cycles of Docetaxel. Googled that with horror when I thought I would lose all my hair, but luckily, I was offered cold cap therapy which for me worked quite well and resulted in me keeping most of it. Had all the usual side effects that came with the chemo and steroids but got through it OK. PSA level once again down to just about 2 and once again thought I had cracked it but no. PSA gradually increased from 2 then 5,7 then 25. Still felt OK in myself but latest test showed it had risen to 146! Now on Enzalutemide so let's see what happens taking this. Cancer is a bugger!
@@glamup2013 Oncologist says he treats the patient not the PSA. I have frequent scans to check on these Mets to see if they have spread or they are stable. So far they are stable but apparently there is another treatment called leutium 177 which is a radioactive thing which targets bone mets and I asked him about it but he wasn't sure if it was available in the UK yet. It is licensed in America and Australia though. I will have to see.
@A Z that's good they are stable and I hope that luteium 177 will be soon available in UK Unfortunately I live in pakistan and there is no chance to get it I m so worried about my father
Your in my prayers Alan,🙏🏼🙏🏼🙏🏼 as I’ve recently had cancer, now my sister is going through breast cancer! Cancer is very disrupting to our lives you are right about that! God bless you my friend 😀🤗🤗🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼💪🏻💪🏻💪🏻💪🏻💪🏻
Alan - I appreciate your regular updates. I really feel for you and share your frustrations. I was diagnosed with metastatic prostate cancer back in March 2013 with a Gleason score of 5 & 4 with a predicted life expectancy of 2-3 years. As you can gather I’m still here and fighting albeit it’s starting to take its toll. I was originally on bicalutamide before going on a second generation hormone therapy called Zytiga. This kept my PSA undetectable for 5 years before my PSA escalated up to 27 in 3 months. I was then placed on a course of docetaxel chemotherapy to which I have my 10th and final round next week. My PSA has gone down to 12 but boy does it take its toll on your body. Hopefully I can go on a trial for a further course of chemotherapy but I’m hoping the NHS will be authorised to prescribe Lutetium 177 - an infused radiation treatment. I have total sympathy for your frustrations with having holidays. We had our bucket list of countries to visit and they have had to go on the back burner. Keep positive, maintain your exercise regime and keep to a healthy diet. It’s a rough and rocky road but you look like a fighter. Take care. God bless
@Jonathan Petty my father is 72 and diagnosed pc bone mets 1 month ago he has tumour in his left leg in femur bone and some lesions in pelvis I m so worried I can't sleep nor eat about 1 month plzzzz guide me
Hey Alan, Thanks for the update. You keep fighting, and I fell for you when you say about traveling and not having the motivation I am there right now also.
Glad to see your face pop up; got worried that you hadn't posted in a while. So sorry to hear about your friend -- cancer truly sucks. Give you wife a hug from me; I SO understand that caregiver worry. I also get the feeling trapped sometimes. My husband has a bone density test tomorrow and then the next round of bloodwork, next Lupron shot, and oncologist visit later this month. Day by day, we'll fight right along side you!
Good to have an update. I was wondering how you are doing. Appreciate your attitude towards this journey so many find themselves on. I understand what you are saying about traveling. My husband has developed sunlight sensitivity over the years so even walking locally is difficult. It's very frustrating. Stay strong.
Hi Alan i took part in a trail last march for a pmsa pet ct scan it is a amazing scan dont know if you can get it on the nhs yet but worth looking into keep chin up
I have had prostate cancer now for 8 years. My doctor watched my PSA go from 2 to 5 and finally 10.5 at which point he thought that maybe there might be a problem. I have had surgery, chemo and radiation plus lupron for the last 8 years. I was very angry and bitter about the whole situation. My surgeon told me that I had about 4 years. The next thing he had to tell me and I quote I should know this is not going to be a good way to die. At first I was very depressed but then I decided I was going to just keep on living just to piss him off. So here I am 8 years later my PSA is going up slowly so far, I still have hot flashes, and I feel tired most of the time and yet I still try to live my life. I do volunteer work, work around the house and just don't worry about my cancer. Cancer will most likely kill me in the end but we all die from something. My advice is go out and live. If you want to go on holiday go. If you Wake up in the morning and you're not looking at roots you're going to have a good day
Normal PET scan wouldn’t show anything for me ! But seeing I had had biopsies done on the pelvis and prostate they knew I had it! And it had shown up on the MRI before ! It only showed up on a PSMA pet scan in the end !! In my case it was Gleason 10 stage 4 it wouldn’t show up on normal PET scans ! This is also true for small metastasis! If you haven’t had one get a PSMA pet scan ! Could save your life !! It did for me ! They saw I still had a few really small spots left so I be will having some more radiotherapy to target them !! My encologist said normally the spots would have not been detected by a normal PET scan and I would have been considered in remission!! So that would have been great !!!
In same boat, book an holiday , somewhere where you can get ptsma pet scan , I think couple places in Europe you can get if you pay ( not Uk, need referral). Bangkok for me , £1,800 no messing , make appointment have at your convenience, results for my benefit only so I know exactly where I am and further scans in future for comparison.
Alan sorry that your friend John died. I hope you had a PSMA PET Scan. If so the results are encouraging. Stage 4 cancer can get you down. I am currently on Zoladex.
Get a PSMA scan. PET/CT and Bone scans can’t detect tumors less than 4mm. The rising PSA may be coming from several minute tumors and or still regular size infected lymph nodes.
Thanks for your video Alan, take care and soldier on, your doing fine mate.
Same thing happened to me and I got a PSMA Pet scan, ask your oncologist about this, they found 3 very small metastatic sites that the normal pet scan didn't see.
Thanks Alan for the update . Really nice to see you and remaining positive. I’m in Spain and I can’t fault the treatment I have had so far for my PC. Hormone treatment, brachytherapy and beam radiation. I thought I was alone feeling down about not being able to get on with my life. It might be seasonal with everyone planning holidays but I too am feeling down at the moment. I look forward to your updates, which often make me smile. I’m feeling a bit alone after my wife left shortly before diagnosis. Friends are there but it’s not the same. Sorry about your friend.
you not alone , im from south africa and in the same boat , try stay positive , its not easy but try
I'm another one in the same boat. Diagnosed a couple of years ago after a routine blood test showed an elevated PSA of 66 which at the time meant nothing to me. Biopsy revealed stage 4 prostate cancer with a Gleason score of 9. Put on 3 monthly hormone injections followed by a course of radiotherapy. PSA down to 2 and thought, great ,I've cracked it. No.
PSA started to rise so told I needed 10 cycles of Docetaxel. Googled that with horror when I thought I would lose all my hair, but luckily, I was offered cold cap therapy which for me worked quite well and resulted in me keeping most of it. Had all the usual side effects that came with the chemo and steroids but got through it OK. PSA level once again down to just about 2 and once again thought I had cracked it but no.
PSA gradually increased from 2 then 5,7 then 25. Still felt OK in myself but latest test showed it had risen to 146!
Now on Enzalutemide so let's see what happens taking this.
Cancer is a bugger!
Do u have prostate bone mets??
@@glamup2013 Yes.
@A Z what says ur oncologist about it ?? I mean can we get some hope for life??? My father has also prostate bone mets and dignosed 1 month ago
@@glamup2013 Oncologist says he treats the patient not the PSA. I have frequent scans to check on these Mets to see if they have spread or they are stable. So far they are stable but apparently there is another treatment called leutium 177 which is a radioactive thing which targets bone mets and I asked him about it but he wasn't sure if it was available in the UK yet. It is licensed in America and Australia though.
I will have to see.
@A Z that's good they are stable and I hope that luteium 177 will be soon available in UK
Unfortunately I live in pakistan and there is no chance to get it I m so worried about my father
Your in my prayers Alan,🙏🏼🙏🏼🙏🏼 as I’ve recently had cancer, now my sister is going through breast cancer! Cancer is very disrupting to our lives you are right about that! God bless you my friend 😀🤗🤗🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼💪🏻💪🏻💪🏻💪🏻💪🏻
Alan thanks for the update and informing us of the apparent good results from PSMA PET scan. Hormone therapy also seems to give me insomnia.
Alan - I appreciate your regular updates. I really feel for you and share your frustrations. I was diagnosed with metastatic prostate cancer back in March 2013 with a Gleason score of 5 & 4 with a predicted life expectancy of 2-3 years. As you can gather I’m still here and fighting albeit it’s starting to take its toll.
I was originally on bicalutamide before going on a second generation hormone therapy called Zytiga. This kept my PSA undetectable for 5 years before my PSA escalated up to 27 in 3 months. I was then placed on a course of docetaxel chemotherapy to which I have my 10th and final round next week. My PSA has gone down to 12 but boy does it take its toll on your body. Hopefully I can go on a trial for a further course of chemotherapy but I’m hoping the NHS will be authorised to prescribe Lutetium 177 - an infused radiation treatment.
I have total sympathy for your frustrations with having holidays. We had our bucket list of countries to visit and they have had to go on the back burner.
Keep positive, maintain your exercise regime and keep to a healthy diet.
It’s a rough and rocky road but you look like a fighter.
Take care. God bless
Do u have prostate bone mets??
@@glamup2013 Sorry for the delay in responding. Yes I do. It has metastasised to my pelvis, lymph nodes, rib cage and spine
@Jonathan Petty when did u diagnosed??
@Jonathan Petty my father is 72 and diagnosed pc bone mets 1 month ago he has tumour in his left leg in femur bone and some lesions in pelvis I m so worried I can't sleep nor eat about 1 month plzzzz guide me
Nice to here from you yes its a journey does get you down but we got to keep fighting keith
Hey Alan, Thanks for the update. You keep fighting, and I fell for you when you say about traveling and not having the motivation I am there right now also.
Glad to see your face pop up; got worried that you hadn't posted in a while. So sorry to hear about your friend -- cancer truly sucks. Give you wife a hug from me; I SO understand that caregiver worry. I also get the feeling trapped sometimes. My husband has a bone density test tomorrow and then the next round of bloodwork, next Lupron shot, and oncologist visit later this month. Day by day, we'll fight right along side you!
nice to hear from you again , looking much better
Good to have an update. I was wondering how you are doing. Appreciate your attitude towards this journey so many find themselves on. I understand what you are saying about traveling. My husband has developed sunlight sensitivity over the years so even walking locally is difficult. It's very frustrating. Stay strong.
Hi Alan i took part in a trail last march for a pmsa pet ct scan it is a amazing scan dont know if you can get it on the nhs yet but worth looking into keep chin up
Wishing you and your family all the very best. Good to see you are keeping your spirits up. Keep posting.
Blessings from United States of America. ❤
Good to see you, Alan. Always love your backgrounds
I have had prostate cancer now for 8 years. My doctor watched my PSA go from 2 to 5 and finally 10.5 at which point he thought that maybe there might be a problem. I have had surgery, chemo and radiation plus lupron for the last 8 years. I was very angry and bitter about the whole situation. My surgeon told me that I had about 4 years. The next thing he had to tell me and I quote I should know this is not going to be a good way to die. At first I was very depressed but then I decided I was going to just keep on living just to piss him off. So here I am 8 years later my PSA is going up slowly so far, I still have hot flashes, and I feel tired most of the time and yet I still try to live my life. I do volunteer work, work around the house and just don't worry about my cancer. Cancer will most likely kill me in the end but we all die from something. My advice is go out and live. If you want to go on holiday go. If you Wake up in the morning and you're not looking at roots you're going to have a good day
Just starting g process
Prosectomy coming up
Your honesty and experience 6:17 are helpful and uplifting
Nice to see you Alan take care x
Normal PET scan wouldn’t show anything for me ! But seeing I had had biopsies done on the pelvis and prostate they knew I had it! And it had shown up on the MRI before ! It only showed up on a PSMA pet scan in the end !! In my case it was Gleason 10 stage 4 it wouldn’t show up on normal PET scans ! This is also true for small metastasis! If you haven’t had one get a PSMA pet scan ! Could save your life !! It did for me ! They saw I still had a few really small spots left so I be will having some more radiotherapy to target them !! My encologist said normally the spots would have not been detected by a normal PET scan and I would have been considered in remission!! So that would have been great !!!
Iam in same place as you my psa going up every 3 months scan showed nothing going on put me. On treatment we must stay strong Keith
In same boat, book an holiday , somewhere where you can get ptsma pet scan , I think couple places in Europe you can get if you pay ( not Uk, need referral). Bangkok for me , £1,800 no messing , make appointment have at your convenience, results for my benefit only so I know exactly where I am and further scans in future for comparison.
Alan sorry that your friend John died. I hope you had a PSMA PET Scan. If so the results are encouraging. Stage 4 cancer can get you down. I am currently on Zoladex.
Get a PSMA scan. PET/CT and Bone scans can’t detect tumors less than 4mm. The rising PSA may be coming from several minute tumors and or still regular size infected lymph nodes.
Yea I hope Alan has a PSMA Pet Scan.
Yes… you need PSMA PET scan. Previous scan methods are obsolete at this point. PSMA is so significantly more sensitive and accurate.
❤
Ask your Dr about adding Ivermectin
Fenbendazole 444 mg 1x day