Treatment Plan and Questions

Greg

Greg

Greg

Hi Josh,

I've been following you since the day you came to this board. I'm just a follower now after losing my mom to melanoma. I never want to put fear in anyone. She just had an exstremly odd case. 

Now, do you follow T.J Sharpe, "Patient #1 blog." He's a guy close to you in age. I know that he was just at several amazing melanoma conferences this past week. Below is his lastest blog. He's definitly someone that knows the lastest treaments and what's next on the horizon. I think he's pretty amazing as a stage IV patient himself he's pretty special. 

I know you're in great hand with your team, Melanoma has nothing on you! You;ve done great on all of you past treatments. I hate that you're here again, but I know it's only up from here. Wishing you the best Josh. Look for T.J. if you haven't connected yet! 

blog. http//www.philly.com/philly/blogs/patient1/A-FasterBlog-for-FasterCures.html

Hi Josh,

I've been following you since the day you came to this board. I'm just a follower now after losing my mom to melanoma. I never want to put fear in anyone. She just had an exstremly odd case. 

Now, do you follow T.J Sharpe, "Patient #1 blog." He's a guy close to you in age. I know that he was just at several amazing melanoma conferences this past week. Below is his lastest blog. He's definitly someone that knows the lastest treaments and what's next on the horizon. I think he's pretty amazing as a stage IV patient himself he's pretty special. 

I know you're in great hand with your team, Melanoma has nothing on you! You;ve done great on all of you past treatments. I hate that you're here again, but I know it's only up from here. Wishing you the best Josh. Look for T.J. if you haven't connected yet! 

blog. http//www.philly.com/philly/blogs/patient1/A-FasterBlog-for-FasterCures.html

Hi Josh,

I've been following you since the day you came to this board. I'm just a follower now after losing my mom to melanoma. I never want to put fear in anyone. She just had an exstremly odd case. 

Now, do you follow T.J Sharpe, "Patient #1 blog." He's a guy close to you in age. I know that he was just at several amazing melanoma conferences this past week. Below is his lastest blog. He's definitly someone that knows the lastest treaments and what's next on the horizon. I think he's pretty amazing as a stage IV patient himself he's pretty special. 

I know you're in great hand with your team, Melanoma has nothing on you! You;ve done great on all of you past treatments. I hate that you're here again, but I know it's only up from here. Wishing you the best Josh. Look for T.J. if you haven't connected yet! 

blog. http//www.philly.com/philly/blogs/patient1/A-FasterBlog-for-FasterCures.html

Hey Josh,

Good to hear that your treatment plan is all ready to go!  Your docs sound awesome.  

My husband is on Keytruda, but I'm certain the side effects are similar to Opdivo.  I know that everyone's side effects can be different, but so far my husband has only had occasional itchy/dry skin, fatigue immediately after the infusion (typically lasts about 3-4 days), mild joint and muscle pain, some headaches, and a slightly upset stomach.  Most of these symptoms disappear after 3-4 days, and they are rather mild while they are appearing.  He has had some vitiligo as well.  He usually takes a nap right after treatment and is pretty wiped the following day, but is feeling pretty good the day after that.  He has been known to play a round of golf 2 days after treatment. 🙂  Overall the side effects are super manageable for him – hoping the same for you as well! 

We had the same question as you regarding the duration of treatment.  Once we received the good news that Keytruda was working, we wanted to know how long he had to be on it.  Both of our oncologists believe he will continue treatment for at least another 2 years (he's 4 months in now).  Because his side effects are so minimal, we are totally on board with that.  

Because Keytruda is administered every 3 weeks instead of 2, we opted to not get a port.  Of course that is a personal choice and depends the situation, but we are super happy with that decision.  The treatment is over within 30 minutes and he doesn't get poked for another 3 weeks, save for the occasional MRI or CT (every 2 and 3 months, respectively).  

Hope this was helpful.  I'll be sending positive thoughts your way!  Wishing you the best.

Katie 

Hey Josh,

Good to hear that your treatment plan is all ready to go!  Your docs sound awesome.  

My husband is on Keytruda, but I'm certain the side effects are similar to Opdivo.  I know that everyone's side effects can be different, but so far my husband has only had occasional itchy/dry skin, fatigue immediately after the infusion (typically lasts about 3-4 days), mild joint and muscle pain, some headaches, and a slightly upset stomach.  Most of these symptoms disappear after 3-4 days, and they are rather mild while they are appearing.  He has had some vitiligo as well.  He usually takes a nap right after treatment and is pretty wiped the following day, but is feeling pretty good the day after that.  He has been known to play a round of golf 2 days after treatment. 🙂  Overall the side effects are super manageable for him – hoping the same for you as well! 

We had the same question as you regarding the duration of treatment.  Once we received the good news that Keytruda was working, we wanted to know how long he had to be on it.  Both of our oncologists believe he will continue treatment for at least another 2 years (he's 4 months in now).  Because his side effects are so minimal, we are totally on board with that.  

Because Keytruda is administered every 3 weeks instead of 2, we opted to not get a port.  Of course that is a personal choice and depends the situation, but we are super happy with that decision.  The treatment is over within 30 minutes and he doesn't get poked for another 3 weeks, save for the occasional MRI or CT (every 2 and 3 months, respectively).  

Hope this was helpful.  I'll be sending positive thoughts your way!  Wishing you the best.

Katie 

Hey Josh,

Good to hear that your treatment plan is all ready to go!  Your docs sound awesome.  

My husband is on Keytruda, but I'm certain the side effects are similar to Opdivo.  I know that everyone's side effects can be different, but so far my husband has only had occasional itchy/dry skin, fatigue immediately after the infusion (typically lasts about 3-4 days), mild joint and muscle pain, some headaches, and a slightly upset stomach.  Most of these symptoms disappear after 3-4 days, and they are rather mild while they are appearing.  He has had some vitiligo as well.  He usually takes a nap right after treatment and is pretty wiped the following day, but is feeling pretty good the day after that.  He has been known to play a round of golf 2 days after treatment. 🙂  Overall the side effects are super manageable for him – hoping the same for you as well! 

We had the same question as you regarding the duration of treatment.  Once we received the good news that Keytruda was working, we wanted to know how long he had to be on it.  Both of our oncologists believe he will continue treatment for at least another 2 years (he's 4 months in now).  Because his side effects are so minimal, we are totally on board with that.  

Because Keytruda is administered every 3 weeks instead of 2, we opted to not get a port.  Of course that is a personal choice and depends the situation, but we are super happy with that decision.  The treatment is over within 30 minutes and he doesn't get poked for another 3 weeks, save for the occasional MRI or CT (every 2 and 3 months, respectively).  

Hope this was helpful.  I'll be sending positive thoughts your way!  Wishing you the best.

Katie 

Ketogenic diets dont have any evidence to support them as a basis for treating cancer.

I dont think vegan diets are a good idea for melanoma either.

I follow a alternative cancer doctor specialist who recommends for melanoma patients a diet rich in fatty grass fed red meat, good fats and oils butter, olive oil,  avocado and also a variety of vegetables and fruits with a restriction on leafy greens and citrus fruit. Ideally as much as you can get should be organic. You should also avoid all refined carbs, refined sugar deep fried food.

As for a port if you have good veins then you dont really need to get a port.

Side effects should not be trivialised as even those who dont get many still get some and with the combo the SEs can be significant. Better to do surgery in my opinion first and leave the drugs as a last option.

Ketogenic diets dont have any evidence to support them as a basis for treating cancer.

I dont think vegan diets are a good idea for melanoma either.

I follow a alternative cancer doctor specialist who recommends for melanoma patients a diet rich in fatty grass fed red meat, good fats and oils butter, olive oil,  avocado and also a variety of vegetables and fruits with a restriction on leafy greens and citrus fruit. Ideally as much as you can get should be organic. You should also avoid all refined carbs, refined sugar deep fried food.

As for a port if you have good veins then you dont really need to get a port.

Side effects should not be trivialised as even those who dont get many still get some and with the combo the SEs can be significant. Better to do surgery in my opinion first and leave the drugs as a last option.

Ketogenic diets dont have any evidence to support them as a basis for treating cancer.

I dont think vegan diets are a good idea for melanoma either.

I follow a alternative cancer doctor specialist who recommends for melanoma patients a diet rich in fatty grass fed red meat, good fats and oils butter, olive oil,  avocado and also a variety of vegetables and fruits with a restriction on leafy greens and citrus fruit. Ideally as much as you can get should be organic. You should also avoid all refined carbs, refined sugar deep fried food.

As for a port if you have good veins then you dont really need to get a port.

Side effects should not be trivialised as even those who dont get many still get some and with the combo the SEs can be significant. Better to do surgery in my opinion first and leave the drugs as a last option.

Sounds like a good plan Josh.

My attempt at some of your questions:

I had virtually no side effects while on Opdivo.  Hopefully you'll have a similar experience.

As far as the port.  I highly recommend one.  My only caveat is I don't know if I'd get one right away.  Some folks (not many but some) have severe side effects and don't stay on the treatment long.  Personally I would hate to have a port installed and then find out a month or two later I don't need it anymore because I'm no longer getting treated.  Maybe see how the first 2 or 3 infusions go and then go for the port.

I had a post a while back after visiting Dr. Weber at Moffitt.  He is of the believe the 2 year trials everyone is doing is overkill.  He thinks going until max benefit (when you reach NED or stable disease) and then 6 months longer is as long as anyone needs to be on Opdivo.  For most that would probably be around a year of treatment.  In your case I believe you'll be NED if I'm not mistaken so I'm not sure what I would do if I was in your shoes.  I think between 12 and 24 months would be reasonable.

I can't recommend a diet but just tell you what I've done.  Whether it's helped with fighting cancer I don't know but I do feel better.  I've reduced red meat to virtually none, get a lot higher percentage of my food from fruits and vegetables, and cut out as much sugar as possible.  I do at least one healthy smoothy a day. 

Brian

Sounds like a good plan Josh.

My attempt at some of your questions:

I had virtually no side effects while on Opdivo.  Hopefully you'll have a similar experience.

As far as the port.  I highly recommend one.  My only caveat is I don't know if I'd get one right away.  Some folks (not many but some) have severe side effects and don't stay on the treatment long.  Personally I would hate to have a port installed and then find out a month or two later I don't need it anymore because I'm no longer getting treated.  Maybe see how the first 2 or 3 infusions go and then go for the port.

I had a post a while back after visiting Dr. Weber at Moffitt.  He is of the believe the 2 year trials everyone is doing is overkill.  He thinks going until max benefit (when you reach NED or stable disease) and then 6 months longer is as long as anyone needs to be on Opdivo.  For most that would probably be around a year of treatment.  In your case I believe you'll be NED if I'm not mistaken so I'm not sure what I would do if I was in your shoes.  I think between 12 and 24 months would be reasonable.

I can't recommend a diet but just tell you what I've done.  Whether it's helped with fighting cancer I don't know but I do feel better.  I've reduced red meat to virtually none, get a lot higher percentage of my food from fruits and vegetables, and cut out as much sugar as possible.  I do at least one healthy smoothy a day. 

Brian

Sounds like a good plan Josh.

My attempt at some of your questions:

I had virtually no side effects while on Opdivo.  Hopefully you'll have a similar experience.

As far as the port.  I highly recommend one.  My only caveat is I don't know if I'd get one right away.  Some folks (not many but some) have severe side effects and don't stay on the treatment long.  Personally I would hate to have a port installed and then find out a month or two later I don't need it anymore because I'm no longer getting treated.  Maybe see how the first 2 or 3 infusions go and then go for the port.

I had a post a while back after visiting Dr. Weber at Moffitt.  He is of the believe the 2 year trials everyone is doing is overkill.  He thinks going until max benefit (when you reach NED or stable disease) and then 6 months longer is as long as anyone needs to be on Opdivo.  For most that would probably be around a year of treatment.  In your case I believe you'll be NED if I'm not mistaken so I'm not sure what I would do if I was in your shoes.  I think between 12 and 24 months would be reasonable.

I can't recommend a diet but just tell you what I've done.  Whether it's helped with fighting cancer I don't know but I do feel better.  I've reduced red meat to virtually none, get a lot higher percentage of my food from fruits and vegetables, and cut out as much sugar as possible.  I do at least one healthy smoothy a day. 

Brian

Sounds like a good plan Josh.

My attempt at some of your questions:

I had virtually no side effects while on Opdivo.  Hopefully you'll have a similar experience.

As far as the port.  I highly recommend one.  My only caveat is I don't know if I'd get one right away.  Some folks (not many but some) have severe side effects and don't stay on the treatment long.  Personally I would hate to have a port installed and then find out a month or two later I don't need it anymore because I'm no longer getting treated.  Maybe see how the first 2 or 3 infusions go and then go for the port.

I had a post a while back after visiting Dr. Weber at Moffitt.  He is of the believe the 2 year trials everyone is doing is overkill.  He thinks going until max benefit (when you reach NED or stable disease) and then 6 months longer is as long as anyone needs to be on Opdivo.  For most that would probably be around a year of treatment.  In your case I believe you'll be NED if I'm not mistaken so I'm not sure what I would do if I was in your shoes.  I think between 12 and 24 months would be reasonable.

I can't recommend a diet but just tell you what I've done.  Whether it's helped with fighting cancer I don't know but I do feel better.  I've reduced red meat to virtually none, get a lot higher percentage of my food from fruits and vegetables, and cut out as much sugar as possible.  I do at least one healthy smoothy a day. 

Brian

Sounds like a good plan Josh.

My attempt at some of your questions:

I had virtually no side effects while on Opdivo.  Hopefully you'll have a similar experience.

As far as the port.  I highly recommend one.  My only caveat is I don't know if I'd get one right away.  Some folks (not many but some) have severe side effects and don't stay on the treatment long.  Personally I would hate to have a port installed and then find out a month or two later I don't need it anymore because I'm no longer getting treated.  Maybe see how the first 2 or 3 infusions go and then go for the port.

I had a post a while back after visiting Dr. Weber at Moffitt.  He is of the believe the 2 year trials everyone is doing is overkill.  He thinks going until max benefit (when you reach NED or stable disease) and then 6 months longer is as long as anyone needs to be on Opdivo.  For most that would probably be around a year of treatment.  In your case I believe you'll be NED if I'm not mistaken so I'm not sure what I would do if I was in your shoes.  I think between 12 and 24 months would be reasonable.

I can't recommend a diet but just tell you what I've done.  Whether it's helped with fighting cancer I don't know but I do feel better.  I've reduced red meat to virtually none, get a lot higher percentage of my food from fruits and vegetables, and cut out as much sugar as possible.  I do at least one healthy smoothy a day. 

Brian

Sounds like a good plan Josh.

My attempt at some of your questions:

I had virtually no side effects while on Opdivo.  Hopefully you'll have a similar experience.

As far as the port.  I highly recommend one.  My only caveat is I don't know if I'd get one right away.  Some folks (not many but some) have severe side effects and don't stay on the treatment long.  Personally I would hate to have a port installed and then find out a month or two later I don't need it anymore because I'm no longer getting treated.  Maybe see how the first 2 or 3 infusions go and then go for the port.

I had a post a while back after visiting Dr. Weber at Moffitt.  He is of the believe the 2 year trials everyone is doing is overkill.  He thinks going until max benefit (when you reach NED or stable disease) and then 6 months longer is as long as anyone needs to be on Opdivo.  For most that would probably be around a year of treatment.  In your case I believe you'll be NED if I'm not mistaken so I'm not sure what I would do if I was in your shoes.  I think between 12 and 24 months would be reasonable.

I can't recommend a diet but just tell you what I've done.  Whether it's helped with fighting cancer I don't know but I do feel better.  I've reduced red meat to virtually none, get a lot higher percentage of my food from fruits and vegetables, and cut out as much sugar as possible.  I do at least one healthy smoothy a day. 

Brian

Sounds like a good plan, Josh! I am on Opdivo, and have been since April. I started the ipi/nivo trial in February, but could only tolerate one dose of the two. Since April, I have been on just Opdivo, with minimal side effects. The biggest one, by far, was the diarrhea. But that has dropped off (knock on wood), and was always manageable. I work 40 hours/week and have even started working out again. My treatments are on every other Thursday, and that following Friday at work is absolutely exhausting, but manageable. I have learned to just listen to my body and rest when it tells me to. I do have some itching, mostly in my hands and back. My ankles and feet sometimes swell, but I do work on my feet most of the day, as well. My thyroid did become out of whack, first it was hyperthyroidism, and now it's hypothyroidism… I take synthroid for that. My hair did thin quite a bit, but i certainly did not lose it all, and it's filling in quite nicely now. All-in-all, my side effects have been minimal and extremely manageable.

I do not have a port, my doc doesn't seem to favor them for this treatment. And, I'm a very hard stick in my arms (next to impossible), so I get my treatments in the back of my hands. So far, this has not been a problem. 

I have had great results! Some of my tumors disappeared, and the rest shrunk and are now stable. No idea how long I'll still be on Opdivo, my doc and I have talked about it a couple of times. He said it may not be necessary for the full two years for patients that are now NED, but since I am stable, we just continue what we are doing for now. I hope that helps answer some of your questions! 🙂

Sounds like a good plan, Josh! I am on Opdivo, and have been since April. I started the ipi/nivo trial in February, but could only tolerate one dose of the two. Since April, I have been on just Opdivo, with minimal side effects. The biggest one, by far, was the diarrhea. But that has dropped off (knock on wood), and was always manageable. I work 40 hours/week and have even started working out again. My treatments are on every other Thursday, and that following Friday at work is absolutely exhausting, but manageable. I have learned to just listen to my body and rest when it tells me to. I do have some itching, mostly in my hands and back. My ankles and feet sometimes swell, but I do work on my feet most of the day, as well. My thyroid did become out of whack, first it was hyperthyroidism, and now it's hypothyroidism… I take synthroid for that. My hair did thin quite a bit, but i certainly did not lose it all, and it's filling in quite nicely now. All-in-all, my side effects have been minimal and extremely manageable.

I do not have a port, my doc doesn't seem to favor them for this treatment. And, I'm a very hard stick in my arms (next to impossible), so I get my treatments in the back of my hands. So far, this has not been a problem. 

I have had great results! Some of my tumors disappeared, and the rest shrunk and are now stable. No idea how long I'll still be on Opdivo, my doc and I have talked about it a couple of times. He said it may not be necessary for the full two years for patients that are now NED, but since I am stable, we just continue what we are doing for now. I hope that helps answer some of your questions! 🙂

Sounds like a good plan, Josh! I am on Opdivo, and have been since April. I started the ipi/nivo trial in February, but could only tolerate one dose of the two. Since April, I have been on just Opdivo, with minimal side effects. The biggest one, by far, was the diarrhea. But that has dropped off (knock on wood), and was always manageable. I work 40 hours/week and have even started working out again. My treatments are on every other Thursday, and that following Friday at work is absolutely exhausting, but manageable. I have learned to just listen to my body and rest when it tells me to. I do have some itching, mostly in my hands and back. My ankles and feet sometimes swell, but I do work on my feet most of the day, as well. My thyroid did become out of whack, first it was hyperthyroidism, and now it's hypothyroidism… I take synthroid for that. My hair did thin quite a bit, but i certainly did not lose it all, and it's filling in quite nicely now. All-in-all, my side effects have been minimal and extremely manageable.

I do not have a port, my doc doesn't seem to favor them for this treatment. And, I'm a very hard stick in my arms (next to impossible), so I get my treatments in the back of my hands. So far, this has not been a problem. 

I have had great results! Some of my tumors disappeared, and the rest shrunk and are now stable. No idea how long I'll still be on Opdivo, my doc and I have talked about it a couple of times. He said it may not be necessary for the full two years for patients that are now NED, but since I am stable, we just continue what we are doing for now. I hope that helps answer some of your questions! 🙂

Hey Josh, 

Sounds like a good plan to me. We have learned that immunotherapy works best when patients have the lowest disease burden. As you probably know, I was on an Nivo/Opdivo NED trial, after Stage IV melanoma. Infusions were for 2 1/2 years, every 2 wks for 6 months, then every 3 months for an additional 2 years. Weber has reiterated to me (I'm one of his patients) the same info Brian noted….that we do not need endless doses of these meds. Of course how much exactly has yet to be ironed out. I am 5 years NED…still…. I had my last dose in June 2013. Most folks do ok despite side effects….I had rashes, arthralgias, some fatigue, wheezing, vitiligo and mouth ulcers. However, most folks who do develop side effects should be treated sooner rather than later, even with prednisone and sometimes with drugs like infliximab for significant problems. There are many posts about side effects with anti-PD1 on my blog. Even so, I missed very little work. I continued to run and do my other, usual exercise. I have always eaten a healthy diet….though not perfect or extreme, had me some good fried chicken last night!….and have continued to do so. There are also many posts regarding various diets and their documented effects (or not) on my blog as well. I did not attain a port and did okay without one throughout my trial even though I have had complete lymphadenectomies to both arms. However, ports are wonderful for many. They do have some risk of infection, but with good technique that can be avoided.

Whatever choices you make with all this….I wish you well. Hang in there! Celeste

Hey Josh, 

Sounds like a good plan to me. We have learned that immunotherapy works best when patients have the lowest disease burden. As you probably know, I was on an Nivo/Opdivo NED trial, after Stage IV melanoma. Infusions were for 2 1/2 years, every 2 wks for 6 months, then every 3 months for an additional 2 years. Weber has reiterated to me (I'm one of his patients) the same info Brian noted….that we do not need endless doses of these meds. Of course how much exactly has yet to be ironed out. I am 5 years NED…still…. I had my last dose in June 2013. Most folks do ok despite side effects….I had rashes, arthralgias, some fatigue, wheezing, vitiligo and mouth ulcers. However, most folks who do develop side effects should be treated sooner rather than later, even with prednisone and sometimes with drugs like infliximab for significant problems. There are many posts about side effects with anti-PD1 on my blog. Even so, I missed very little work. I continued to run and do my other, usual exercise. I have always eaten a healthy diet….though not perfect or extreme, had me some good fried chicken last night!….and have continued to do so. There are also many posts regarding various diets and their documented effects (or not) on my blog as well. I did not attain a port and did okay without one throughout my trial even though I have had complete lymphadenectomies to both arms. However, ports are wonderful for many. They do have some risk of infection, but with good technique that can be avoided.

Whatever choices you make with all this….I wish you well. Hang in there! Celeste

Hey Josh, 

Sounds like a good plan to me. We have learned that immunotherapy works best when patients have the lowest disease burden. As you probably know, I was on an Nivo/Opdivo NED trial, after Stage IV melanoma. Infusions were for 2 1/2 years, every 2 wks for 6 months, then every 3 months for an additional 2 years. Weber has reiterated to me (I'm one of his patients) the same info Brian noted….that we do not need endless doses of these meds. Of course how much exactly has yet to be ironed out. I am 5 years NED…still…. I had my last dose in June 2013. Most folks do ok despite side effects….I had rashes, arthralgias, some fatigue, wheezing, vitiligo and mouth ulcers. However, most folks who do develop side effects should be treated sooner rather than later, even with prednisone and sometimes with drugs like infliximab for significant problems. There are many posts about side effects with anti-PD1 on my blog. Even so, I missed very little work. I continued to run and do my other, usual exercise. I have always eaten a healthy diet….though not perfect or extreme, had me some good fried chicken last night!….and have continued to do so. There are also many posts regarding various diets and their documented effects (or not) on my blog as well. I did not attain a port and did okay without one throughout my trial even though I have had complete lymphadenectomies to both arms. However, ports are wonderful for many. They do have some risk of infection, but with good technique that can be avoided.

Whatever choices you make with all this….I wish you well. Hang in there! Celeste

HI Josh, 

Just thought I would share that my now 7 month old daughter is on opdivo. She really has not had much side effects.  Well that I know of…obviously she can not talk, but she is a happy baby. She did have a bit of reaction with the first dose. She also had extra bowel movements,  after her treatment. That seems to have eased up now. She just had dose #7 but the first 2 were at a reduced dose. I would say the last 3 treatment's I have not noticed anything really.

Good luck!

Amanda

HI Josh, 

Just thought I would share that my now 7 month old daughter is on opdivo. She really has not had much side effects.  Well that I know of…obviously she can not talk, but she is a happy baby. She did have a bit of reaction with the first dose. She also had extra bowel movements,  after her treatment. That seems to have eased up now. She just had dose #7 but the first 2 were at a reduced dose. I would say the last 3 treatment's I have not noticed anything really.

Good luck!

Amanda

HI Josh, 

Just thought I would share that my now 7 month old daughter is on opdivo. She really has not had much side effects.  Well that I know of…obviously she can not talk, but she is a happy baby. She did have a bit of reaction with the first dose. She also had extra bowel movements,  after her treatment. That seems to have eased up now. She just had dose #7 but the first 2 were at a reduced dose. I would say the last 3 treatment's I have not noticed anything really.

Good luck!

Amanda

Hi Josh,

I'm sorry to hear that you keep having these recurrences. I've had a couple, and it has never been great to hear that it was back.

I also did ipi, although not in combo with anything, and then moved on to pembro. I had a lot more side effects than you did on the ipi: hypophysitis (although partial functioning of my pituitary did return), hypothyroidism (my thyroid is toast), virtually zero testosterone level (I now give myself shots), adrenal insufficiency, and type 1 diabetes. Apparently my immune system developed an appetite for both melanoma and my endocrine system!

I am tolerating pembro much better, mainly itching, diarrhea, and fatigue. My oncologist changed my dosing to once every 6 weeks to try and reduce the side effects. The fatigue was a bit of a bitch, but I am now on Provigil which is counteracting it nicely.

Hopefully you will tolerate the Opdivo better than the ipi, and it sounds like you did pretty good on the ipi.

I did get a port put in around March or so, and I am glad I did. All the successive pokes were causing cumulative damage to my veins, and the nurses were starting to complain that they were getting harder to poke. In fact the day my port was installed it took three pokes to get me going and the nurse said my vein (that is now collapsed) was her second worst in her 20 year career! If I remember to put the lidocaine cream on it before an access I can't feel anything.

As always hoping for the best for you!

– Paul

Hi Josh,

I'm sorry to hear that you keep having these recurrences. I've had a couple, and it has never been great to hear that it was back.

I also did ipi, although not in combo with anything, and then moved on to pembro. I had a lot more side effects than you did on the ipi: hypophysitis (although partial functioning of my pituitary did return), hypothyroidism (my thyroid is toast), virtually zero testosterone level (I now give myself shots), adrenal insufficiency, and type 1 diabetes. Apparently my immune system developed an appetite for both melanoma and my endocrine system!

I am tolerating pembro much better, mainly itching, diarrhea, and fatigue. My oncologist changed my dosing to once every 6 weeks to try and reduce the side effects. The fatigue was a bit of a bitch, but I am now on Provigil which is counteracting it nicely.

Hopefully you will tolerate the Opdivo better than the ipi, and it sounds like you did pretty good on the ipi.

I did get a port put in around March or so, and I am glad I did. All the successive pokes were causing cumulative damage to my veins, and the nurses were starting to complain that they were getting harder to poke. In fact the day my port was installed it took three pokes to get me going and the nurse said my vein (that is now collapsed) was her second worst in her 20 year career! If I remember to put the lidocaine cream on it before an access I can't feel anything.

As always hoping for the best for you!

– Paul

Hi Josh,

I'm sorry to hear that you keep having these recurrences. I've had a couple, and it has never been great to hear that it was back.

I also did ipi, although not in combo with anything, and then moved on to pembro. I had a lot more side effects than you did on the ipi: hypophysitis (although partial functioning of my pituitary did return), hypothyroidism (my thyroid is toast), virtually zero testosterone level (I now give myself shots), adrenal insufficiency, and type 1 diabetes. Apparently my immune system developed an appetite for both melanoma and my endocrine system!

I am tolerating pembro much better, mainly itching, diarrhea, and fatigue. My oncologist changed my dosing to once every 6 weeks to try and reduce the side effects. The fatigue was a bit of a bitch, but I am now on Provigil which is counteracting it nicely.

Hopefully you will tolerate the Opdivo better than the ipi, and it sounds like you did pretty good on the ipi.

I did get a port put in around March or so, and I am glad I did. All the successive pokes were causing cumulative damage to my veins, and the nurses were starting to complain that they were getting harder to poke. In fact the day my port was installed it took three pokes to get me going and the nurse said my vein (that is now collapsed) was her second worst in her 20 year career! If I remember to put the lidocaine cream on it before an access I can't feel anything.

As always hoping for the best for you!

– Paul