davidstewart

Hi Niki,

Thanks for your interest and concern! We definitely feel out of the crisis but not by any means out of the woods.

To your questions: The remaining node was what was left from the enlargement of lymph nodes summer 2015 that alerted me to the possibility that my skin cancer had traveled on. I had only two treatments of ipi/nivo but the other mets disappeared. Toxicity eliminated any further immunotherapy so Dec was my last infusion. June biopsy on lungs confirmed sarcoidosis which appeared to disappear on the next PET scan. Without a brain biopsy they cannot elminate cancer. 

So we are awaiting the results from this coming third MRI and looking for a second opinion from an immuno-neurolosit. Life feesmore out of control for me as we were doing well with the response to immunotherapy for months and then got blindsided–almost died. No driving for six weeks and no work until I get my full concentration back. At least it beats the alternative.

Thanks for your website.

David

Hi Niki,

Thanks for your interest and concern! We definitely feel out of the crisis but not by any means out of the woods.

To your questions: The remaining node was what was left from the enlargement of lymph nodes summer 2015 that alerted me to the possibility that my skin cancer had traveled on. I had only two treatments of ipi/nivo but the other mets disappeared. Toxicity eliminated any further immunotherapy so Dec was my last infusion. June biopsy on lungs confirmed sarcoidosis which appeared to disappear on the next PET scan. Without a brain biopsy they cannot elminate cancer. 

So we are awaiting the results from this coming third MRI and looking for a second opinion from an immuno-neurolosit. Life feesmore out of control for me as we were doing well with the response to immunotherapy for months and then got blindsided–almost died. No driving for six weeks and no work until I get my full concentration back. At least it beats the alternative.

Thanks for your website.

David

Hi Niki,

Thanks for your interest and concern! We definitely feel out of the crisis but not by any means out of the woods.

To your questions: The remaining node was what was left from the enlargement of lymph nodes summer 2015 that alerted me to the possibility that my skin cancer had traveled on. I had only two treatments of ipi/nivo but the other mets disappeared. Toxicity eliminated any further immunotherapy so Dec was my last infusion. June biopsy on lungs confirmed sarcoidosis which appeared to disappear on the next PET scan. Without a brain biopsy they cannot elminate cancer. 

So we are awaiting the results from this coming third MRI and looking for a second opinion from an immuno-neurolosit. Life feesmore out of control for me as we were doing well with the response to immunotherapy for months and then got blindsided–almost died. No driving for six weeks and no work until I get my full concentration back. At least it beats the alternative.

Thanks for your website.

David

Hi Deb,

Thank you for your concern.

We share the concern about the cause of the inflammation. Docs are pleased that high dose steroids are reducing neurological symptoms well but as I am weaned we will see.

A brain MRI is scheduled for December 7 and we will know more then.

Currenly we are looking for a second opinion from an experienced immunotherapy neurologist. Any suggestion?

Thanks, David

Hi Deb,

Thank you for your concern.

We share the concern about the cause of the inflammation. Docs are pleased that high dose steroids are reducing neurological symptoms well but as I am weaned we will see.

A brain MRI is scheduled for December 7 and we will know more then.

Currenly we are looking for a second opinion from an experienced immunotherapy neurologist. Any suggestion?

Thanks, David

Hi Deb,

Thank you for your concern.

We share the concern about the cause of the inflammation. Docs are pleased that high dose steroids are reducing neurological symptoms well but as I am weaned we will see.

A brain MRI is scheduled for December 7 and we will know more then.

Currenly we are looking for a second opinion from an experienced immunotherapy neurologist. Any suggestion?

Thanks, David

Thank you Patina for your concern, response and inspiring history.

I had a brain MRI August 2015,reviewed by two radioloists and concluding no mets.

My most recent was with this hospitalization (3 weeks ago) where the first radiolist that that what he saw was age related. A second review revealed  "subtle" signs of inflammation. I've been treated with high dose steriods and antiseizure meds since that time. Met with a neuro-immunologist this past Monday and he scheduled another high constrast brain MRI December 7 so we should know more by then. Yesterday I got a call from Dr. Steve Hodi's office at Dana Farber re: release of the most recent MRI for his purusal. I had started out on his ipi/nivo study and have maintained a relationship. My Duke oncologist is connected with him as well.

Since I had a seizure NC State laws do not allow me to drive for six months. I am getting my eyes examined by a neuro opthalogist next week. I'm not working until my concentration improves more. Quite an adjustment. 

We have a friend who work does research into immunotherapy at UNC to suggest a person for a second opinion. If there is no improvement with the third brain MRI I will likely continue with these high dose steriods and add Remikon infusions every other week. Given that I had a biopsy-based pulmonary sarcoidosis diagnosis in June that resolved without steriods we are hopeful that the same course could manifest for this. The alternatives are not good.

Thank you again,

David

Thank you Patina for your concern, response and inspiring history.

I had a brain MRI August 2015,reviewed by two radioloists and concluding no mets.

My most recent was with this hospitalization (3 weeks ago) where the first radiolist that that what he saw was age related. A second review revealed  "subtle" signs of inflammation. I've been treated with high dose steriods and antiseizure meds since that time. Met with a neuro-immunologist this past Monday and he scheduled another high constrast brain MRI December 7 so we should know more by then. Yesterday I got a call from Dr. Steve Hodi's office at Dana Farber re: release of the most recent MRI for his purusal. I had started out on his ipi/nivo study and have maintained a relationship. My Duke oncologist is connected with him as well.

Since I had a seizure NC State laws do not allow me to drive for six months. I am getting my eyes examined by a neuro opthalogist next week. I'm not working until my concentration improves more. Quite an adjustment. 

We have a friend who work does research into immunotherapy at UNC to suggest a person for a second opinion. If there is no improvement with the third brain MRI I will likely continue with these high dose steriods and add Remikon infusions every other week. Given that I had a biopsy-based pulmonary sarcoidosis diagnosis in June that resolved without steriods we are hopeful that the same course could manifest for this. The alternatives are not good.

Thank you again,

David

Thank you Patina for your concern, response and inspiring history.

I had a brain MRI August 2015,reviewed by two radioloists and concluding no mets.

My most recent was with this hospitalization (3 weeks ago) where the first radiolist that that what he saw was age related. A second review revealed  "subtle" signs of inflammation. I've been treated with high dose steriods and antiseizure meds since that time. Met with a neuro-immunologist this past Monday and he scheduled another high constrast brain MRI December 7 so we should know more by then. Yesterday I got a call from Dr. Steve Hodi's office at Dana Farber re: release of the most recent MRI for his purusal. I had started out on his ipi/nivo study and have maintained a relationship. My Duke oncologist is connected with him as well.

Since I had a seizure NC State laws do not allow me to drive for six months. I am getting my eyes examined by a neuro opthalogist next week. I'm not working until my concentration improves more. Quite an adjustment. 

We have a friend who work does research into immunotherapy at UNC to suggest a person for a second opinion. If there is no improvement with the third brain MRI I will likely continue with these high dose steriods and add Remikon infusions every other week. Given that I had a biopsy-based pulmonary sarcoidosis diagnosis in June that resolved without steriods we are hopeful that the same course could manifest for this. The alternatives are not good.

Thank you again,

David

Thanks Patina.  This trial is now closed with FDA approval of the regime. I can get treatments at Duke (closer to home) but not sure that the nivo will be covered by Medicare. A number of folks are weighing in with staying in the study although it would involve more travel and costs. Not sure how to proceed.

Thanks Patina.  This trial is now closed with FDA approval of the regime. I can get treatments at Duke (closer to home) but not sure that the nivo will be covered by Medicare. A number of folks are weighing in with staying in the study although it would involve more travel and costs. Not sure how to proceed.

Thanks Patina.  This trial is now closed with FDA approval of the regime. I can get treatments at Duke (closer to home) but not sure that the nivo will be covered by Medicare. A number of folks are weighing in with staying in the study although it would involve more travel and costs. Not sure how to proceed.

Ed–

Thank you! Very good pointers and I appreciate you taking the time.

David

Ed–

Thank you! Very good pointers and I appreciate you taking the time.

David

Ed–

Thank you! Very good pointers and I appreciate you taking the time.

David