Can't believe it's been 3 years, seems like it was just last year. Time flies. Those mountains look amazing. Glad for the update and to see you looking great.
Has it been 3 years already? Good to hear from you. Glad to hear you took action to change up the drug and to get something to help you digest fat better. Yay, Creon! Thanks for the update. Still crossing my fingers for you.
Peter, a rocky road, but so glad you are now seeing light at the end of the proverbial tunnel. Just happy to see your face and that you are again doing things you like to do! Cheers!
Hey Peter, Good to hear from you. Really appreciate your videos and updates. Think we could all learn from you in regards not taking life for granted. And smelling the roses. All the best! Will keep an eye out for the next one.
As a younger patient myself who is a medical provider in the military and was diagnosed with SI NET this year with liver Mets, you have been such an inspiration to me!
Peter, I am so very happy to hear of your good news and that things have remained stable. You have been through so much and you keep going strong and you look well despite all the challenges. You seem to have wonderful support from your friends and Jenny which is just invaluable. Always great to have an update from you and I often learn a lot from your videos.
Thanks for the update! I'm glad you're doing well. I had a bout of cancer 4 years ago so it's encouraging to see that we're both still around! Keep on keeping on.
So thrilled to see a video pop up from you! Thank you for the update and those incredible clips of the mountain landscape - I gasped when initially seeing your awesome video of mother nature at her finest. I can't imagine how much relief those digestive enzymes must bring to your life and hope they can become easier for you to track down. Pleased you are doing relatively well, but sure am hoping you see more steps forward in the days ahead. May your body's ability to function post-cancer soon catch up to your healthy attitude, and allow you more freedom to live life in your chosen way, as an athlete and otherwise. Great job with sprucing up the yard, although it did look very intense and I hope you didn't hurt yourself in the process. Will always be rooting for you to conquer the beast, Peter. I know the pace is slower than you would like, but you seem to be handling everything with your typical awesome attitude and doing your best to go with the flow - I believe that is the only way to achieve success in the end. Please be safe on the roads and try not to push yourself too hard in any endeavor. Take care, Peter. Edit: I forgot to mention how impressively insightful it was of you to clue in to the difference between the different versions of that drug!! Good job!! Karen
Hi Peter, so good to see you. I have been thinking about you. I am so glad you are feeling better now. Thank you for sharing with us. Look forward to your next video. ❤️🙏🏻🇺🇸
Hi Peter great news with your latest scan results. Cannot believe its three years since your surgery. Glad you are managing to get issues with medication sorted out so very important. Fantastic scenery from your holiday in France so nice to see you both having a good time. Garden is looking great so worth the hard work!! Continued best wishes x
Bro. Ive been rooting for you for the past three years. I learned so much about your diagnosis. I even told the doctor I wanted to do the 24 unrine analysis test. Here's to you living a healthy life.
Hello Peter, so nice to see your update. I am happy you are doing well and that Jenny and yourself went away for a lovely trip with beautiful scenery in France. Keep making those dreams come true Peter and everyone. 🤗🤗
You look fantastic, Pete! So great to hear from you. All good news. I love it... Here in America, we're hoping for some good news this November. Please send us some positive vibes. All the best, G.
Thanks so much for the update. It is great to see you looking and doing well, Peter. Nice job on the garden! Wishing you continued healing and good fortune.
So happy to hear this update was thinking how you were going recently. Pleased to hear the latest results and just keep living and inspiring us all. Mark
Good to see you, Peter. Take a look into niacin (vit B3) defficiency, one of the severe signs of defficiency is diaria. Be mindful of the niacin flush though.
Brilliant hearing from you ! You look and sound GOOD 👍 the situation with generic drugs and dispensers constantly swapping them due to cost and availability issues is a real problem for many many people now on long term medication. Glad you advocated for yourself and so sorry that you were traumatised earlier in your treatments. Praying that your exercise dilemmas resolve.
My brand of shots changed as well and my pharmacist warned me there’d most likely be upset stomach. The one company stoped making them I was told, not enough $$ to make it worthwhile. My stomach and digestion haven’t been the same since my 3rd & 4th surgery. It’s improved from last year but still not the same so I guess that’s it. I will definitely look into creon though and give that a go. Glad to see you again I was thinking it’s been a while. Best of luck to you Peter.
Thanks for the video! After battling breast cancer and having my stomach removed due to a gene mutation, I'm now back on my feet, just 10 kg lighter. I noticed you take Creon, but I haven't needed it so far since I seem to be digesting everything well. I'm eager to explore more of Europe-Scandinavia is on my wish list as I've never visited. I'm glad to hear your tumors are stable. Great news!
Glad to hear you're back on your feet again after going through what must have been a very challenging time. I hope you get to explore more of Europe soon!
Hi Peter. I'm from Ukraine with the same disease and also stage 4. I already had 3 Ocreotide shots. It's so hard to get this shots in Ukraine but i'm doing my best. And also i had carcinoid syndrome. My treatment - Ocreotide shot + Everolimus + zoledronic acid (i have mets in bones) per month. It's so hard to manage it physically and mentally but I'm keep fighting. In september I'll have my 1 CT scan after 3 months of treatment.
Sorry to hear you're going through such a tough time. Keep taking each day at a time. All the best to you and I hope your scan returns some positive results.
Good to hear from you! I'm really glad that you are doing well over all. I was interested to hear about Chamonix. I have just been watching videos of a school friend who does trail running around the amazing mountains we have around Seattle. You should think about planning a trip!
Fantastic news all round, and to hear success stories with meds, happy for you. A friend started them at a similar time after 2 years of digestive problems. Do hope supply can be sorted, if there are more of you on it now. I definitely want to go to Chamonix - in summer that is!! Incredible, thank you.
Appreciate you sharing your journey. I am on my 3rd year of lanreotide for PNETS stage 4 (pancreas and liver). Not a surgery candidate. Curious if you suffer bad hypoglycemia. That's my worst side effect. I love running and playing tennis and hypoglycemia really makes it challenging. I also noticed last 3 injections of lanreotide much tougher on stomach. I wonder if my "brand" changed as well. I may inquire next month. Thanks so much for sharing! It is inspiring to see another warrior out there! Jen from USA
Hi Jen. I do feel my blood sugar drops sometimes when exercising. It's usually pretty early on. Almost seems to take my body a little long to start producing energy when exercising. All the best to you.
Hi Peter 😊, good to hear you're doing okay. I'm the guy who chatted to you about the advanz injection and the reintroduction of symptoms. I did mention it to the health care supplier and the last two sent have been the ipson one same as yours 🤔😄. The reason they say is they couldn't get any supplies of the other one, which is why I'm getting the other, but makes you wonder if alot of us complained 🤔. Last ipson injection I thought I'd got away with any symptoms as I did it on the sun night, Mon and Tue I was fine. Was just about to make plans for wed, but the symptoms suddenly came on and lasted most of the day 😓. But Thursday I was back okay! I'm due again tonight so god knows what will happen this time. Glad your doing your own injection now, I'm on my 46th injection and 44 have been done by myself, but at least you can choose your Time too do it now 🙂. Perhaps it would be easier to carry out if we were self Harmer's 😅,then we'd relish in it, rather than putting it off a few times before taking the plunge,and then sitting back wondering why you made such a fuss about it 😅. So it will be interesting to see if advanz will be supplied again to me. When I went into it, it saves the NHS nearly £200 a month supplying the other one, confirming the fact there's no such thing as a bargain 😅. Good luck for the future hope things go okay 👍
Hi. Thanks for your comment. I too had a look at the cost element. It makes you wonder how they can produce it cheaper. Hope you have a good period of lesser side effects from now on.
@@PeterMRiley I think they can do it cheaper as they weren't involved with all the original research/trial's etc when the other company wouldn't be earning as such 🤔. Just done the injection and now treating myself to a few Guinness to celebrate being a brave soldier 😆
Hi Peter, everything went ok with my last ipsen injection, minimal side effects 🙂. Told my contact nurse at the hospital the reason I didn't want the advanz one again if possible, to which she said she would contact the hospital pharmacy to ask them if they can send the ipsen one. Just got latest delivery and they've supplied the bloody advanz one again 😡😭. Can you let me know if the same happens to you on your next delivery 🙂. I've got a call booked with the oncologist on the 24th for results of my latest CT scan,so I will be asking if she can change my prescription. I wonder if advanz have done anything to make the side effects better 🤔, spouse I Will find out next injection!!
Thanks for the update. Did you have any noticeable difference in the sensation during injection between the old and new Lanreotide meds? I know my injections are much more comfortable when the syringe is near body temperature (and less viscous) as opposed to room temperature. Treatment staff now keeps the syringe in their pocket or under a warming blanket before jabbing me. Hang in there, Peter!
Nice one, Peter. Always appreciate your life perspective. Wishing you continued healing.
Thanks Barry!
Can't believe it's been 3 years, seems like it was just last year. Time flies. Those mountains look amazing. Glad for the update and to see you looking great.
Thank you!
Has it been 3 years already? Good to hear from you. Glad to hear you took action to change up the drug and to get something to help you digest fat better. Yay, Creon! Thanks for the update. Still crossing my fingers for you.
Hi Sylvia 👋 Thank you as always!
You look amazingly well ❤ I’m glad to see you. I hope your meds keep the evil disease at bay.
Keep up the good fight! Very nice editing and filming.
Great to hear update , fantastic that talking to the right professionals who changed your medicines to alleviate your symptoms worked so well
Thanks!
Peter, a rocky road, but so glad you are now seeing light at the end of the proverbial tunnel. Just happy to see your face and that you are again doing things you like to do! Cheers!
Thanks Clay!
Hey Peter, Good to hear from you. Really appreciate your videos and updates. Think we could all learn from you in regards not taking life for granted. And smelling the roses. All the best! Will keep an eye out for the next one.
As a younger patient myself who is a medical provider in the military and was diagnosed with SI NET this year with liver Mets, you have been such an inspiration to me!
Sorry for my late reply, but thank you so much for your comment, it really means a lot. Hope you're doing ok.
Hi Peter ,good to hear from you kipping us up to date is , been very difficult for bud you’re staying strong love to you your both and family X.
Thanks Roulla. Love to you too.
Peter, I am so very happy to hear of your good news and that things have remained stable. You have been through so much and you keep going strong and you look well despite all the challenges. You seem to have wonderful support from your friends and Jenny which is just invaluable. Always great to have an update from you and I often learn a lot from your videos.
Thanks for watching Rosie, and thank you for your continued support!
Thanks for the update! I'm glad you're doing well. I had a bout of cancer 4 years ago so it's encouraging to see that we're both still around! Keep on keeping on.
Thanks Ben. Hope all is good with you.
Lovely to hear from you Peter!
Thank you!
So thrilled to see a video pop up from you! Thank you for the update and those incredible clips of the mountain landscape - I gasped when initially seeing your awesome video of mother nature at her finest.
I can't imagine how much relief those digestive enzymes must bring to your life and hope they can become easier for you to track down. Pleased you are doing relatively well, but sure am hoping you see more steps forward in the days ahead. May your body's ability to function post-cancer soon catch up to your healthy attitude, and allow you more freedom to live life in your chosen way, as an athlete and otherwise.
Great job with sprucing up the yard, although it did look very intense and I hope you didn't hurt yourself in the process. Will always be rooting for you to conquer the beast, Peter. I know the pace is slower than you would like, but you seem to be handling everything with your typical awesome attitude and doing your best to go with the flow - I believe that is the only way to achieve success in the end. Please be safe on the roads and try not to push yourself too hard in any endeavor. Take care, Peter.
Edit: I forgot to mention how impressively insightful it was of you to clue in to the difference between the different versions of that drug!! Good job!!
Karen
good to hear from you and you are looking healthy.
Hi Peter, so good to see you. I have been thinking about you. I am so glad you are feeling better now. Thank you for sharing with us. Look forward to your next video. ❤️🙏🏻🇺🇸
Hi Joan 👋 Thanks for watching!
Hi Peter great news with your latest scan results. Cannot believe its three years since your surgery. Glad you are managing to get issues with medication sorted out so very important. Fantastic scenery from your holiday in France so nice to see you both having a good time. Garden is looking great so worth the hard work!! Continued best wishes x
Thanks so much Anne. I know, 3 years has flown by!
Greetings from Hong Kong. See you are doing well. Keep up the high spirits
Thanks, you too!
Hello, so happy to see you up and about.
Wonderful to hear this positive update, Peter!
Ahh, so good to see you, you look well x
Hello from a fellow resection person. Glad to hear from you.
three years already. I wonder if I have used my last three years as good as I could have.
Bro. Ive been rooting for you for the past three years. I learned so much about your diagnosis. I even told the doctor I wanted to do the 24 unrine analysis test. Here's to you living a healthy life.
Good to see you back and doing well.
Hello Peter, so nice to see your update. I am happy you are doing well and that Jenny and yourself went away for a lovely trip with beautiful scenery in France. Keep making those dreams come true Peter and everyone. 🤗🤗
Thanks Catherine!
You look fantastic, Pete! So great to hear from you. All good news. I love it... Here in America, we're hoping for some good news this November. Please send us some positive vibes. All the best, G.
Thanks Gary! Sending positive thoughts.
So good to hear from you son, Creon really helps, with digestion. Take care ❤xxx
Thanks Victoria!
Great to see you. Was over in chamonix covering the Utmb last year. I’m on the same injection every 21 days. Coming up to 5 years diagnosed
Would love to be in Chamonix during UTMB. Hope you're doing well!
Thanks so much for the update. It is great to see you looking and doing well, Peter. Nice job on the garden! Wishing you continued healing and good fortune.
Thanks so much!
Great to see you posting! I am so happy you are doing well.
Thanks Michele!
Great to see you Peter 👌
Thank you!
So happy to hear this update was thinking how you were going recently. Pleased to hear the latest results and just keep living and inspiring us all. Mark
Thanks Mark!
Glad yr doing well buddy 🙏
Thanks!
Time flies Peter and so glad so are doing so well
Always good to hear from you. Hope everything goes well.
Good to see you, Peter. Take a look into niacin (vit B3) defficiency, one of the severe signs of defficiency is diaria. Be mindful of the niacin flush though.
nice to hear from you mate! glad thet the meds are having less sideeffects now
Thanks Dave!
Brilliant hearing from you ! You look and sound GOOD 👍 the situation with generic drugs and dispensers constantly swapping them due to cost and availability issues is a real problem for many many people now on long term medication. Glad you advocated for yourself and so sorry that you were traumatised earlier in your treatments. Praying that your exercise dilemmas resolve.
Thanks Fiona!
nice to hear from you Pete, wishing you all the luck dude! Keep doing your thing :)
Thanks, will do!
My brand of shots changed as well and my pharmacist warned me there’d most likely be upset stomach. The one company stoped making them I was told, not enough $$ to make it worthwhile. My stomach and digestion haven’t been the same since my 3rd & 4th surgery. It’s improved from last year but still not the same so I guess that’s it. I will definitely look into creon though and give that a go. Glad to see you again I was thinking it’s been a while. Best of luck to you Peter.
Thanks Natalie, and all the best to you too.
Thanks for the video! After battling breast cancer and having my stomach removed due to a gene mutation, I'm now back on my feet, just 10 kg lighter. I noticed you take Creon, but I haven't needed it so far since I seem to be digesting everything well. I'm eager to explore more of Europe-Scandinavia is on my wish list as I've never visited. I'm glad to hear your tumors are stable. Great news!
Glad to hear you're back on your feet again after going through what must have been a very challenging time. I hope you get to explore more of Europe soon!
Good to hear from you...Glad all is well..
Hi Peter. I'm from Ukraine with the same disease and also stage 4. I already had 3 Ocreotide shots. It's so hard to get this shots in Ukraine but i'm doing my best. And also i had carcinoid syndrome. My treatment - Ocreotide shot + Everolimus + zoledronic acid (i have mets in bones) per month. It's so hard to manage it physically and mentally but I'm keep fighting. In september I'll have my 1 CT scan after 3 months of treatment.
Sorry to hear you're going through such a tough time. Keep taking each day at a time. All the best to you and I hope your scan returns some positive results.
Peter, So good to see you! You have a beautiful garden. I loved seeing the footage from your trip to France. What type of scans do you get? Thank you!
Thanks Rebecca! I had an MRI of my liver with contrast, and a dotate 68 (nuclear) PET CT
Good to hear from you! I'm really glad that you are doing well over all. I was interested to hear about Chamonix. I have just been watching videos of a school friend who does trail running around the amazing mountains we have around Seattle. You should think about planning a trip!
Fantastic news all round, and to hear success stories with meds, happy for you. A friend started them at a similar time after 2 years of digestive problems. Do hope supply can be sorted, if there are more of you on it now. I definitely want to go to Chamonix - in summer that is!! Incredible, thank you.
Thank you Jude!
💜💜🦋 ...looking good Peter...Mary in Canada
Appreciate you sharing your journey. I am on my 3rd year of lanreotide for PNETS stage 4 (pancreas and liver). Not a surgery candidate. Curious if you suffer bad hypoglycemia. That's my worst side effect. I love running and playing tennis and hypoglycemia really makes it challenging. I also noticed last 3 injections of lanreotide much tougher on stomach. I wonder if my "brand" changed as well. I may inquire next month. Thanks so much for sharing! It is inspiring to see another warrior out there! Jen from USA
Hi Jen. I do feel my blood sugar drops sometimes when exercising. It's usually pretty early on. Almost seems to take my body a little long to start producing energy when exercising. All the best to you.
Peter, regarding scar tissue, look up Serrapeptase and BPC-157.
Hi Peter 😊, good to hear you're doing okay. I'm the guy who chatted to you about the advanz injection and the reintroduction of symptoms. I did mention it to the health care supplier and the last two sent have been the ipson one same as yours 🤔😄. The reason they say is they couldn't get any supplies of the other one, which is why I'm getting the other, but makes you wonder if alot of us complained 🤔. Last ipson injection I thought I'd got away with any symptoms as I did it on the sun night, Mon and Tue I was fine. Was just about to make plans for wed, but the symptoms suddenly came on and lasted most of the day 😓. But Thursday I was back okay! I'm due again tonight so god knows what will happen this time. Glad your doing your own injection now, I'm on my 46th injection and 44 have been done by myself, but at least you can choose your Time too do it now 🙂. Perhaps it would be easier to carry out if we were self Harmer's 😅,then we'd relish in it, rather than putting it off a few times before taking the plunge,and then sitting back wondering why you made such a fuss about it 😅. So it will be interesting to see if advanz will be supplied again to me. When I went into it, it saves the NHS nearly £200 a month supplying the other one, confirming the fact there's no such thing as a bargain 😅. Good luck for the future hope things go okay 👍
Hi. Thanks for your comment. I too had a look at the cost element. It makes you wonder how they can produce it cheaper.
Hope you have a good period of lesser side effects from now on.
@@PeterMRiley I think they can do it cheaper as they weren't involved with all the original research/trial's etc when the other company wouldn't be earning as such 🤔. Just done the injection and now treating myself to a few Guinness to celebrate being a brave soldier 😆
Hi Peter, everything went ok with my last ipsen injection, minimal side effects 🙂. Told my contact nurse at the hospital the reason I didn't want the advanz one again if possible, to which she said she would contact the hospital pharmacy to ask them if they can send the ipsen one. Just got latest delivery and they've supplied the bloody advanz one again 😡😭. Can you let me know if the same happens to you on your next delivery 🙂. I've got a call booked with the oncologist on the 24th for results of my latest CT scan,so I will be asking if she can change my prescription. I wonder if advanz have done anything to make the side effects better 🤔, spouse I Will find out next injection!!
Thanks for the update.
Did you have any noticeable difference in the sensation during injection between the old and new Lanreotide meds? I know my injections are much more comfortable when the syringe is near body temperature (and less viscous) as opposed to room temperature. Treatment staff now keeps the syringe in their pocket or under a warming blanket before jabbing me.
Hang in there, Peter!
Thanks for watching! If anything, the new injection was less painful. Not quite as thick a substance so went in easily.
I'd recommend looking into the low fodmap diet. It might help you a little bit!
There you are yay💞
Hi Natalie 👋
Hey Peter.
Hi John 👋
BTW, hasn’t the doctor recommended immunotherapy which is quite useful for a lot of cancers
Immunotherapy is rarely recommended for NETs. I think they're working on it! Hopefully a break through will happen soon.