Hi Josh, 

I just read Courtney's caringbridge posts. I am so sorry all of this is happening! I wanted to respond because I am also Stage IV being treated at Johns Hopkins. Not only that, but I live in Montgomery County, MD, and I work in Poolesville. I have yet to meet someone with a similar diagnosis in person. I go for treatments every other Thursday at the Greenspring Station location. I know her posts mention her doing immunotherapy… Is there any talk of her getting into the BMS trial at Hopkins with ipi and Nivo? I am on that trial, but could only stand one dose of the two drugs… Now they have me on just the Nivo. My lung and bowel mets are shrinking, but it looks like I may have some new lymph node involvement. Still waiting to talk to my doc about that, hoping for some answers tomorrow. At any rate, I am praying for Courtney… Prayers, thoughts, and plenty of good vibes!!!

Hi Josh, 

I just read Courtney's caringbridge posts. I am so sorry all of this is happening! I wanted to respond because I am also Stage IV being treated at Johns Hopkins. Not only that, but I live in Montgomery County, MD, and I work in Poolesville. I have yet to meet someone with a similar diagnosis in person. I go for treatments every other Thursday at the Greenspring Station location. I know her posts mention her doing immunotherapy… Is there any talk of her getting into the BMS trial at Hopkins with ipi and Nivo? I am on that trial, but could only stand one dose of the two drugs… Now they have me on just the Nivo. My lung and bowel mets are shrinking, but it looks like I may have some new lymph node involvement. Still waiting to talk to my doc about that, hoping for some answers tomorrow. At any rate, I am praying for Courtney… Prayers, thoughts, and plenty of good vibes!!!

Hi Josh, 

I just read Courtney's caringbridge posts. I am so sorry all of this is happening! I wanted to respond because I am also Stage IV being treated at Johns Hopkins. Not only that, but I live in Montgomery County, MD, and I work in Poolesville. I have yet to meet someone with a similar diagnosis in person. I go for treatments every other Thursday at the Greenspring Station location. I know her posts mention her doing immunotherapy… Is there any talk of her getting into the BMS trial at Hopkins with ipi and Nivo? I am on that trial, but could only stand one dose of the two drugs… Now they have me on just the Nivo. My lung and bowel mets are shrinking, but it looks like I may have some new lymph node involvement. Still waiting to talk to my doc about that, hoping for some answers tomorrow. At any rate, I am praying for Courtney… Prayers, thoughts, and plenty of good vibes!!!

Like others on this site have said to me she is not alone. Unfortunately we are all battling or have battled this disease. The best advice I can give is she needs to find that one thing worth fighting for and never give up. If that one thing is to fight for her parents then that is good. Let that give her the strength. She also needs the hope she can beat this disease. Others here have done it so why not her.

Artie

Like others on this site have said to me she is not alone. Unfortunately we are all battling or have battled this disease. The best advice I can give is she needs to find that one thing worth fighting for and never give up. If that one thing is to fight for her parents then that is good. Let that give her the strength. She also needs the hope she can beat this disease. Others here have done it so why not her.

Artie

Like others on this site have said to me she is not alone. Unfortunately we are all battling or have battled this disease. The best advice I can give is she needs to find that one thing worth fighting for and never give up. If that one thing is to fight for her parents then that is good. Let that give her the strength. She also needs the hope she can beat this disease. Others here have done it so why not her.

Artie

Hi Josh, Court and family

I read your caring bridge info and think Courtney is awesome! I too am stage 4, with mets to breast,  lung and now bones. Am being treated also by Dr. Sharfman at JH. The bone met is recent, so am to undergo all of the diagnostic tests, CT on Wed, bone scan on Wed. while starting radiation on the bone met in my left arm. 

Melanoma sucks and we need to keep kicking it to the curb. Like Court I have great family support and I trust the good docs and treaters we've met thru this crap. I also like to read of others like Eileen who continue the fight and find motivation in her story as well as Courtney's. I am grateful every day I can get out of bed, see a bit of nature, follow NATS baseball and help encourage others to keep up the good fight. 

Immunotherapy is one positive stride taken to stop the mel. When I was diagnosed in Jan. 2008 there was interferon which I did high dose for a month then subq for 3 months. I've also done IL2, Jan-May last year. I believe I too will start the newer licensed immunotherapy very soon, likely at JH Greensprings. 

Keep looking forward, make plans and read the many survivor stories on MRF. We can do THIS!

Prayers and blessings sent your way

Maureen

Hi Josh, Court and family

I read your caring bridge info and think Courtney is awesome! I too am stage 4, with mets to breast,  lung and now bones. Am being treated also by Dr. Sharfman at JH. The bone met is recent, so am to undergo all of the diagnostic tests, CT on Wed, bone scan on Wed. while starting radiation on the bone met in my left arm. 

Melanoma sucks and we need to keep kicking it to the curb. Like Court I have great family support and I trust the good docs and treaters we've met thru this crap. I also like to read of others like Eileen who continue the fight and find motivation in her story as well as Courtney's. I am grateful every day I can get out of bed, see a bit of nature, follow NATS baseball and help encourage others to keep up the good fight. 

Immunotherapy is one positive stride taken to stop the mel. When I was diagnosed in Jan. 2008 there was interferon which I did high dose for a month then subq for 3 months. I've also done IL2, Jan-May last year. I believe I too will start the newer licensed immunotherapy very soon, likely at JH Greensprings. 

Keep looking forward, make plans and read the many survivor stories on MRF. We can do THIS!

Prayers and blessings sent your way

Maureen

Hi Josh, Court and family

I read your caring bridge info and think Courtney is awesome! I too am stage 4, with mets to breast,  lung and now bones. Am being treated also by Dr. Sharfman at JH. The bone met is recent, so am to undergo all of the diagnostic tests, CT on Wed, bone scan on Wed. while starting radiation on the bone met in my left arm. 

Melanoma sucks and we need to keep kicking it to the curb. Like Court I have great family support and I trust the good docs and treaters we've met thru this crap. I also like to read of others like Eileen who continue the fight and find motivation in her story as well as Courtney's. I am grateful every day I can get out of bed, see a bit of nature, follow NATS baseball and help encourage others to keep up the good fight. 

Immunotherapy is one positive stride taken to stop the mel. When I was diagnosed in Jan. 2008 there was interferon which I did high dose for a month then subq for 3 months. I've also done IL2, Jan-May last year. I believe I too will start the newer licensed immunotherapy very soon, likely at JH Greensprings. 

Keep looking forward, make plans and read the many survivor stories on MRF. We can do THIS!

Prayers and blessings sent your way

Maureen

Find a different melanoma oncologist ASAP and get a consultation ASAP with a radiologist that specializes in Gamma Knifed Radiation, preferably at a hospital with a medical school that has doctors with excellent reputations and are really up on current research and don't neglect their patients with out dated plans that don't include brain MRIs or neglect to talk to patients about Gamma Knife Radiation or the findings with it combined with Yervoy.  You REALLY need a second or third set of expert eyes on this before you start treatment.  

Frankly, I'm beyond stunned that a doctor would only now have a MRI of the brain done and not have been having one taken on a regular basis because of the instance of brain mets in melanoma patients. He or she is not anyone I would send a friend or family member too in my humble opinion.

First, there is a lot of  evidence that if patients are treated for brain mets with gamma knife radiation (aka SRS) and then treated with immunotherapy (specifically Yervoy) that these patients have superior results compared to those with immunotherapy alone.  T-cells are stimulated and pass the blood brain barrier….

My Mom (Stage IV) had gamma knife radiation followed by Yerovy 4 days later and she has had amazing results.  She had 9 brain mets the day of gamma knife, the radiologist at Cedars Sinai only treated 8 of them because he thought 1 was a blood vessel. We did not have a great experience at Cedars inai in Beverly between this and other issues with the follow and were even told that new tumors that were discovered that we should watch for a while.  Terrible advice.  However, we had an emergency consult at USC in Los Angeles and the doctors found and treated 17 tumors in April of 2014, 8 days after getting lousy advice. it pays to get second and third opinions. Period.  

My Mom has zero cognitive issues, every tumor shrank…many disappeared. Unfortunately, they do think she has had a reocurrence of a tumor treated at Cedars Sinai and we are going to figure out this week and next about confirming diagnose and a craniotomy.  They don't think she will have any memory issues and will go on Keytruda which the doctors expect will work just as well or better that Yervoy.  Everyone sees this as a bump in the road. She was on her way to being someone they thought would need no further treatment…. 

There is lots of hope for Courtney, but she needs some help getting to the right doctors to discuss Gamma Knife Radiation and treatment with Yervoy and if it means a long drive or out of state do it..  And she also needs to if she is BRAF positive or not.

Final recommendation is to post things like brain mets on the board. No one who has had brain mets and knows about gamma knife is NOT going to say what I said. – They may be less harsh in saying the doctor is a idiot, but the advice would be the same.

Good luck.

Read these studies:

Ippilimumab and radiation therapy for melanoma brain metastases

"Four of 10 evaluable patients (40.0%) who received ipilimumab prior to radiotherapy demonstrated a partial response to radiotherapy, compared with two of 22 evaluable patients (9.1%) who did not receive ipilimumab." 

http://www.ncbi.nlm.nih.gov/portal/utils/pageresolver.fcgi?recordid=557fb2f2a2d3c19604c9e08f

Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors

"The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT."

http://www.elekta.com/press/9381f384-ff4a-4561-80c7-5175f5e0f381/study-finds-gamma-knife-radiosurgery-alone-yields-equal-survival-outcomes-for-patients-with-two-to-10-tumors.html

Find a different melanoma oncologist ASAP and get a consultation ASAP with a radiologist that specializes in Gamma Knifed Radiation, preferably at a hospital with a medical school that has doctors with excellent reputations and are really up on current research and don't neglect their patients with out dated plans that don't include brain MRIs or neglect to talk to patients about Gamma Knife Radiation or the findings with it combined with Yervoy.  You REALLY need a second or third set of expert eyes on this before you start treatment.  

Frankly, I'm beyond stunned that a doctor would only now have a MRI of the brain done and not have been having one taken on a regular basis because of the instance of brain mets in melanoma patients. He or she is not anyone I would send a friend or family member too in my humble opinion.

First, there is a lot of  evidence that if patients are treated for brain mets with gamma knife radiation (aka SRS) and then treated with immunotherapy (specifically Yervoy) that these patients have superior results compared to those with immunotherapy alone.  T-cells are stimulated and pass the blood brain barrier….

My Mom (Stage IV) had gamma knife radiation followed by Yerovy 4 days later and she has had amazing results.  She had 9 brain mets the day of gamma knife, the radiologist at Cedars Sinai only treated 8 of them because he thought 1 was a blood vessel. We did not have a great experience at Cedars inai in Beverly between this and other issues with the follow and were even told that new tumors that were discovered that we should watch for a while.  Terrible advice.  However, we had an emergency consult at USC in Los Angeles and the doctors found and treated 17 tumors in April of 2014, 8 days after getting lousy advice. it pays to get second and third opinions. Period.  

My Mom has zero cognitive issues, every tumor shrank…many disappeared. Unfortunately, they do think she has had a reocurrence of a tumor treated at Cedars Sinai and we are going to figure out this week and next about confirming diagnose and a craniotomy.  They don't think she will have any memory issues and will go on Keytruda which the doctors expect will work just as well or better that Yervoy.  Everyone sees this as a bump in the road. She was on her way to being someone they thought would need no further treatment…. 

There is lots of hope for Courtney, but she needs some help getting to the right doctors to discuss Gamma Knife Radiation and treatment with Yervoy and if it means a long drive or out of state do it..  And she also needs to if she is BRAF positive or not.

Final recommendation is to post things like brain mets on the board. No one who has had brain mets and knows about gamma knife is NOT going to say what I said. – They may be less harsh in saying the doctor is a idiot, but the advice would be the same.

Good luck.

Read these studies:

Ippilimumab and radiation therapy for melanoma brain metastases

"Four of 10 evaluable patients (40.0%) who received ipilimumab prior to radiotherapy demonstrated a partial response to radiotherapy, compared with two of 22 evaluable patients (9.1%) who did not receive ipilimumab." 

http://www.ncbi.nlm.nih.gov/portal/utils/pageresolver.fcgi?recordid=557fb2f2a2d3c19604c9e08f

Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors

"The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT."

http://www.elekta.com/press/9381f384-ff4a-4561-80c7-5175f5e0f381/study-finds-gamma-knife-radiosurgery-alone-yields-equal-survival-outcomes-for-patients-with-two-to-10-tumors.html

Find a different melanoma oncologist ASAP and get a consultation ASAP with a radiologist that specializes in Gamma Knifed Radiation, preferably at a hospital with a medical school that has doctors with excellent reputations and are really up on current research and don't neglect their patients with out dated plans that don't include brain MRIs or neglect to talk to patients about Gamma Knife Radiation or the findings with it combined with Yervoy.  You REALLY need a second or third set of expert eyes on this before you start treatment.  

Frankly, I'm beyond stunned that a doctor would only now have a MRI of the brain done and not have been having one taken on a regular basis because of the instance of brain mets in melanoma patients. He or she is not anyone I would send a friend or family member too in my humble opinion.

First, there is a lot of  evidence that if patients are treated for brain mets with gamma knife radiation (aka SRS) and then treated with immunotherapy (specifically Yervoy) that these patients have superior results compared to those with immunotherapy alone.  T-cells are stimulated and pass the blood brain barrier….

My Mom (Stage IV) had gamma knife radiation followed by Yerovy 4 days later and she has had amazing results.  She had 9 brain mets the day of gamma knife, the radiologist at Cedars Sinai only treated 8 of them because he thought 1 was a blood vessel. We did not have a great experience at Cedars inai in Beverly between this and other issues with the follow and were even told that new tumors that were discovered that we should watch for a while.  Terrible advice.  However, we had an emergency consult at USC in Los Angeles and the doctors found and treated 17 tumors in April of 2014, 8 days after getting lousy advice. it pays to get second and third opinions. Period.  

My Mom has zero cognitive issues, every tumor shrank…many disappeared. Unfortunately, they do think she has had a reocurrence of a tumor treated at Cedars Sinai and we are going to figure out this week and next about confirming diagnose and a craniotomy.  They don't think she will have any memory issues and will go on Keytruda which the doctors expect will work just as well or better that Yervoy.  Everyone sees this as a bump in the road. She was on her way to being someone they thought would need no further treatment…. 

There is lots of hope for Courtney, but she needs some help getting to the right doctors to discuss Gamma Knife Radiation and treatment with Yervoy and if it means a long drive or out of state do it..  And she also needs to if she is BRAF positive or not.

Final recommendation is to post things like brain mets on the board. No one who has had brain mets and knows about gamma knife is NOT going to say what I said. – They may be less harsh in saying the doctor is a idiot, but the advice would be the same.

Good luck.

Read these studies:

Ippilimumab and radiation therapy for melanoma brain metastases

"Four of 10 evaluable patients (40.0%) who received ipilimumab prior to radiotherapy demonstrated a partial response to radiotherapy, compared with two of 22 evaluable patients (9.1%) who did not receive ipilimumab." 

http://www.ncbi.nlm.nih.gov/portal/utils/pageresolver.fcgi?recordid=557fb2f2a2d3c19604c9e08f

Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors

"The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT."

http://www.elekta.com/press/9381f384-ff4a-4561-80c7-5175f5e0f381/study-finds-gamma-knife-radiosurgery-alone-yields-equal-survival-outcomes-for-patients-with-two-to-10-tumors.html