Rawlins Mom

Hi there,

My mother, a young 74 y/o was initially on Keytruda (3 doses) and then switched to the ipi/nivo combo (2 doses).  I'm not sure the specific dosing of the ipi/nivo.  Unfortunately, she had a pretty heavy tumor load and mets to the brain.  she had also gone through targeted radiation and whole brain radiation.  She passed away a few weeks ago, Oct. 2.  

But, as far as side effects and her age, she breezed through all the treatments!  Some fatigue and loss of appetite, but it never slowed her down much.  She was very active, (music/arts), and was able to live her life pretty close to how it was prior to her diagnosis. 

Good luck, and keep us posted.  Fingers crossed for a positive outcome!

Hi there,

My mother, a young 74 y/o was initially on Keytruda (3 doses) and then switched to the ipi/nivo combo (2 doses).  I'm not sure the specific dosing of the ipi/nivo.  Unfortunately, she had a pretty heavy tumor load and mets to the brain.  she had also gone through targeted radiation and whole brain radiation.  She passed away a few weeks ago, Oct. 2.  

But, as far as side effects and her age, she breezed through all the treatments!  Some fatigue and loss of appetite, but it never slowed her down much.  She was very active, (music/arts), and was able to live her life pretty close to how it was prior to her diagnosis. 

Good luck, and keep us posted.  Fingers crossed for a positive outcome!

Hi there,

My mother, a young 74 y/o was initially on Keytruda (3 doses) and then switched to the ipi/nivo combo (2 doses).  I'm not sure the specific dosing of the ipi/nivo.  Unfortunately, she had a pretty heavy tumor load and mets to the brain.  she had also gone through targeted radiation and whole brain radiation.  She passed away a few weeks ago, Oct. 2.  

But, as far as side effects and her age, she breezed through all the treatments!  Some fatigue and loss of appetite, but it never slowed her down much.  She was very active, (music/arts), and was able to live her life pretty close to how it was prior to her diagnosis. 

Good luck, and keep us posted.  Fingers crossed for a positive outcome!

I am so sorry to hear about your father.  My mother also had tumors in her liver, lungs, bone, and mets to the brain.  She went through targeted brain radiation, and 3 doses of Keytruda before her scans showed no improvement and the tumor load was increasing.  She then swithched to the ipi/nivo combo (2 doses) and had 10 days of WBR.  She passed away 4 weeks later, Oct. 2, 2015.

I'm not sure my feeling on the WBR.  I don't know if it did any good at all.  She became more foggy, but was that the tumor load or the side effects of the radiation?  The steroids did help with her appetite and sort of gave her one last boost of energy.  I think the doc's just wanted to take one last stab at a treatment, and that was the only option left.  In hindsight, I'm not sure if it was worth it.  There was no added time with her or change in the outcome.    

Tough decision.  My thoughts are with you.

I am so sorry to hear about your father.  My mother also had tumors in her liver, lungs, bone, and mets to the brain.  She went through targeted brain radiation, and 3 doses of Keytruda before her scans showed no improvement and the tumor load was increasing.  She then swithched to the ipi/nivo combo (2 doses) and had 10 days of WBR.  She passed away 4 weeks later, Oct. 2, 2015.

I'm not sure my feeling on the WBR.  I don't know if it did any good at all.  She became more foggy, but was that the tumor load or the side effects of the radiation?  The steroids did help with her appetite and sort of gave her one last boost of energy.  I think the doc's just wanted to take one last stab at a treatment, and that was the only option left.  In hindsight, I'm not sure if it was worth it.  There was no added time with her or change in the outcome.    

Tough decision.  My thoughts are with you.

I am so sorry to hear about your father.  My mother also had tumors in her liver, lungs, bone, and mets to the brain.  She went through targeted brain radiation, and 3 doses of Keytruda before her scans showed no improvement and the tumor load was increasing.  She then swithched to the ipi/nivo combo (2 doses) and had 10 days of WBR.  She passed away 4 weeks later, Oct. 2, 2015.

I'm not sure my feeling on the WBR.  I don't know if it did any good at all.  She became more foggy, but was that the tumor load or the side effects of the radiation?  The steroids did help with her appetite and sort of gave her one last boost of energy.  I think the doc's just wanted to take one last stab at a treatment, and that was the only option left.  In hindsight, I'm not sure if it was worth it.  There was no added time with her or change in the outcome.    

Tough decision.  My thoughts are with you.

Hi Carrie,

Sounds like my mom is in the same boat as your dad.  Stage IV mucosal melanoma with mets to the liver and brain.  She is also BRAF negative, and will have her 3rd Keytruda infusion next week.  She had initial radiation treatments on the primary, and specific radiation on the one tumor in the brain.  She has not been on steroids since the initial 3-day course after the brain radiation. 

She has been very tired as well, and her appetitie is probably 1/3 what it used to be, and certain foods tend to really mess with her gut. 

So, I don't have an answer or suggestions, but feel for you guys, and will keep tabs on this topic to see if anyone has any good info. 

Take Care, 

Hi Carrie,

Sounds like my mom is in the same boat as your dad.  Stage IV mucosal melanoma with mets to the liver and brain.  She is also BRAF negative, and will have her 3rd Keytruda infusion next week.  She had initial radiation treatments on the primary, and specific radiation on the one tumor in the brain.  She has not been on steroids since the initial 3-day course after the brain radiation. 

She has been very tired as well, and her appetitie is probably 1/3 what it used to be, and certain foods tend to really mess with her gut. 

So, I don't have an answer or suggestions, but feel for you guys, and will keep tabs on this topic to see if anyone has any good info. 

Take Care, 

Hi Carrie,

Sounds like my mom is in the same boat as your dad.  Stage IV mucosal melanoma with mets to the liver and brain.  She is also BRAF negative, and will have her 3rd Keytruda infusion next week.  She had initial radiation treatments on the primary, and specific radiation on the one tumor in the brain.  She has not been on steroids since the initial 3-day course after the brain radiation. 

She has been very tired as well, and her appetitie is probably 1/3 what it used to be, and certain foods tend to really mess with her gut. 

So, I don't have an answer or suggestions, but feel for you guys, and will keep tabs on this topic to see if anyone has any good info. 

Take Care, 

Recent lurker, first time poster.  

My mom (Stage IV mucosal melanoma with mets to liver and brain) has had radiation for the abdomen and laser radiation for the brain met (can't remember the specific name), and she's getting her first dose of Keytruda today.  She was recently diagnosed (few weeks ago), and Medicare has approved payment for Keytruda as a first line treatment.  Fingers crossed that it slows this shit down!    

Recent lurker, first time poster.  

My mom (Stage IV mucosal melanoma with mets to liver and brain) has had radiation for the abdomen and laser radiation for the brain met (can't remember the specific name), and she's getting her first dose of Keytruda today.  She was recently diagnosed (few weeks ago), and Medicare has approved payment for Keytruda as a first line treatment.  Fingers crossed that it slows this shit down!    

Recent lurker, first time poster.  

My mom (Stage IV mucosal melanoma with mets to liver and brain) has had radiation for the abdomen and laser radiation for the brain met (can't remember the specific name), and she's getting her first dose of Keytruda today.  She was recently diagnosed (few weeks ago), and Medicare has approved payment for Keytruda as a first line treatment.  Fingers crossed that it slows this shit down!