Wheels1994

My liver and lung mets were the first to vanish on Keytruda. After my 2nd scan and treatment #10.  I still have adrenal gland masses and various spots in thoracic region but the liver and lungs were first to heal. 

Of course we are all different and don't know who responds to what and why- but thought I'd weigh in that I had success with the liver. 

Best of luck!!!

My liver and lung mets were the first to vanish on Keytruda. After my 2nd scan and treatment #10.  I still have adrenal gland masses and various spots in thoracic region but the liver and lungs were first to heal. 

Of course we are all different and don't know who responds to what and why- but thought I'd weigh in that I had success with the liver. 

Best of luck!!!

My liver and lung mets were the first to vanish on Keytruda. After my 2nd scan and treatment #10.  I still have adrenal gland masses and various spots in thoracic region but the liver and lungs were first to heal. 

Of course we are all different and don't know who responds to what and why- but thought I'd weigh in that I had success with the liver. 

Best of luck!!!

Man, I hate this for you Artie. I had a great experience at MDA this time last year for 8 separate trips, TIL harvest, bladder tumor resection, and biochemo before finally landing on Keytruda. 

It's too bad it has to be this way- but there is most definitely a knowledge needed on how to navigate "the system". We saw it at MDA with (as you note) the business office and approvals. I was fortunate. I have a background in medical device sales management and worked with surgeons and hospital administrators daily and was comfortable dealing with the business side. My dad joined me throughout and he's a retired lawyer who questions everything. We left nothing to chance and triple followed up with everyone and were certain to form relationships with everyone, most importantly my doc and his team.  The peer to peer follow-up is real with the insurance docs and our docs.  Insurance routinely denies treatment and scans until the docs get involved then you see the bills and EOBs get adjusted.  I know we all are doing this regularly and sometimes the system fails us. I just want to pass on this reality to others reading this that are new to the journey. You have to take control and be the CEO of your ship and stay on top of things because this type of stuff happens.   I know you are doing this, Artie, again I say this for anyone just starting to go thru it. 

My dad and I even joke about starting our own cancer patient consulting business to help people navigate this unfortunate side of the journey we all have to deal with, especially in an ever changing healthcare environment.

Best of luck and I'll be thinking about you Artie.  

Man, I hate this for you Artie. I had a great experience at MDA this time last year for 8 separate trips, TIL harvest, bladder tumor resection, and biochemo before finally landing on Keytruda. 

It's too bad it has to be this way- but there is most definitely a knowledge needed on how to navigate "the system". We saw it at MDA with (as you note) the business office and approvals. I was fortunate. I have a background in medical device sales management and worked with surgeons and hospital administrators daily and was comfortable dealing with the business side. My dad joined me throughout and he's a retired lawyer who questions everything. We left nothing to chance and triple followed up with everyone and were certain to form relationships with everyone, most importantly my doc and his team.  The peer to peer follow-up is real with the insurance docs and our docs.  Insurance routinely denies treatment and scans until the docs get involved then you see the bills and EOBs get adjusted.  I know we all are doing this regularly and sometimes the system fails us. I just want to pass on this reality to others reading this that are new to the journey. You have to take control and be the CEO of your ship and stay on top of things because this type of stuff happens.   I know you are doing this, Artie, again I say this for anyone just starting to go thru it. 

My dad and I even joke about starting our own cancer patient consulting business to help people navigate this unfortunate side of the journey we all have to deal with, especially in an ever changing healthcare environment.

Best of luck and I'll be thinking about you Artie.  

Man, I hate this for you Artie. I had a great experience at MDA this time last year for 8 separate trips, TIL harvest, bladder tumor resection, and biochemo before finally landing on Keytruda. 

It's too bad it has to be this way- but there is most definitely a knowledge needed on how to navigate "the system". We saw it at MDA with (as you note) the business office and approvals. I was fortunate. I have a background in medical device sales management and worked with surgeons and hospital administrators daily and was comfortable dealing with the business side. My dad joined me throughout and he's a retired lawyer who questions everything. We left nothing to chance and triple followed up with everyone and were certain to form relationships with everyone, most importantly my doc and his team.  The peer to peer follow-up is real with the insurance docs and our docs.  Insurance routinely denies treatment and scans until the docs get involved then you see the bills and EOBs get adjusted.  I know we all are doing this regularly and sometimes the system fails us. I just want to pass on this reality to others reading this that are new to the journey. You have to take control and be the CEO of your ship and stay on top of things because this type of stuff happens.   I know you are doing this, Artie, again I say this for anyone just starting to go thru it. 

My dad and I even joke about starting our own cancer patient consulting business to help people navigate this unfortunate side of the journey we all have to deal with, especially in an ever changing healthcare environment.

Best of luck and I'll be thinking about you Artie.  

I've had similar successs with Keytruda.  Feel better than 100% because I've been off work for the last 6 months since starting to feel better and (like your father) have been working out and exercising every day for a couple hours.  Tumors have all shrunk 75%+ and now no more mets on lung, spleen and stomach.  Lots of things now stable and some things starting to really clear up.  Great to hear your story.

I've had similar successs with Keytruda.  Feel better than 100% because I've been off work for the last 6 months since starting to feel better and (like your father) have been working out and exercising every day for a couple hours.  Tumors have all shrunk 75%+ and now no more mets on lung, spleen and stomach.  Lots of things now stable and some things starting to really clear up.  Great to hear your story.

I've had similar successs with Keytruda.  Feel better than 100% because I've been off work for the last 6 months since starting to feel better and (like your father) have been working out and exercising every day for a couple hours.  Tumors have all shrunk 75%+ and now no more mets on lung, spleen and stomach.  Lots of things now stable and some things starting to really clear up.  Great to hear your story.

Yes, I used medical marijuanna for pain and it helped significantly.  It helped me get off of 180mg of morphine per day, 2 different nausea meds, and Xanax for both anxiety and sleep.  I'm a definite believer.  I went to Colorado and purchased many different types of strains on the advice of the "bud-tenders" there and honed in on 2-3 that worked really well for me.  I never smoked enough to be super stoned.  The stuff is pretty strong.  Typically 1-2 puffs does the trick.  Some of the best sleep I've ever had and very relaxing with minimal pain.  I was able to kick all narcotics.

Yes, I used medical marijuanna for pain and it helped significantly.  It helped me get off of 180mg of morphine per day, 2 different nausea meds, and Xanax for both anxiety and sleep.  I'm a definite believer.  I went to Colorado and purchased many different types of strains on the advice of the "bud-tenders" there and honed in on 2-3 that worked really well for me.  I never smoked enough to be super stoned.  The stuff is pretty strong.  Typically 1-2 puffs does the trick.  Some of the best sleep I've ever had and very relaxing with minimal pain.  I was able to kick all narcotics.

Yes, I used medical marijuanna for pain and it helped significantly.  It helped me get off of 180mg of morphine per day, 2 different nausea meds, and Xanax for both anxiety and sleep.  I'm a definite believer.  I went to Colorado and purchased many different types of strains on the advice of the "bud-tenders" there and honed in on 2-3 that worked really well for me.  I never smoked enough to be super stoned.  The stuff is pretty strong.  Typically 1-2 puffs does the trick.  Some of the best sleep I've ever had and very relaxing with minimal pain.  I was able to kick all narcotics.

At the worst part of my journey in early 2015, I was on 180mg daily of morphine (bone mets in shoulder and femur), Xanax to relax and sleep, and varying meds to help with mild nausea.    I started to improve in my first treatments with Keytruda and wanted off all these narcotics.  Drove to Colorado and sampled different products that agreed with me to help me ween off of the morphine and help with anxiety and sleep.  

Took very small amounts due to the potency and over the course of about 8 weeks was able to get off of everything.  Went from @5 scripts a day to 0.  Keytruda was working very well, so it surely wasn't the pot/THC edibles alone, but it certainly helped with the transition to get off of everything.  Now I just use it in the evenings @ 1-2x a week for relax/anxiety.

Carrie, I was worried about being on prednisone (small-medium daily doses) and Keytruda at the same time and MD Anderson mentioned that there isn't anything conclusive but studies are showing that low-medium doses didn't have an effect.  I faired very well while on both and now am off steroids due to my adrenal function at 100% thanks to those tumors shrinking significantly.

Matt

At the worst part of my journey in early 2015, I was on 180mg daily of morphine (bone mets in shoulder and femur), Xanax to relax and sleep, and varying meds to help with mild nausea.    I started to improve in my first treatments with Keytruda and wanted off all these narcotics.  Drove to Colorado and sampled different products that agreed with me to help me ween off of the morphine and help with anxiety and sleep.  

Took very small amounts due to the potency and over the course of about 8 weeks was able to get off of everything.  Went from @5 scripts a day to 0.  Keytruda was working very well, so it surely wasn't the pot/THC edibles alone, but it certainly helped with the transition to get off of everything.  Now I just use it in the evenings @ 1-2x a week for relax/anxiety.

Carrie, I was worried about being on prednisone (small-medium daily doses) and Keytruda at the same time and MD Anderson mentioned that there isn't anything conclusive but studies are showing that low-medium doses didn't have an effect.  I faired very well while on both and now am off steroids due to my adrenal function at 100% thanks to those tumors shrinking significantly.

Matt

At the worst part of my journey in early 2015, I was on 180mg daily of morphine (bone mets in shoulder and femur), Xanax to relax and sleep, and varying meds to help with mild nausea.    I started to improve in my first treatments with Keytruda and wanted off all these narcotics.  Drove to Colorado and sampled different products that agreed with me to help me ween off of the morphine and help with anxiety and sleep.  

Took very small amounts due to the potency and over the course of about 8 weeks was able to get off of everything.  Went from @5 scripts a day to 0.  Keytruda was working very well, so it surely wasn't the pot/THC edibles alone, but it certainly helped with the transition to get off of everything.  Now I just use it in the evenings @ 1-2x a week for relax/anxiety.

Carrie, I was worried about being on prednisone (small-medium daily doses) and Keytruda at the same time and MD Anderson mentioned that there isn't anything conclusive but studies are showing that low-medium doses didn't have an effect.  I faired very well while on both and now am off steroids due to my adrenal function at 100% thanks to those tumors shrinking significantly.

Matt