Stage 3 and 4 NED rollcall

I became Stage IV in 2007.  Mets surgically removed from each lung (12/07 and 2/08) brain (7/08) and small intestine (1/10).  I participated in a vaccine trial summer/fall of 2009.  I've been NED since the small intestine met was removed – almost six years now.  My CT scan last week was negative.

I became Stage IV in 2007.  Mets surgically removed from each lung (12/07 and 2/08) brain (7/08) and small intestine (1/10).  I participated in a vaccine trial summer/fall of 2009.  I've been NED since the small intestine met was removed – almost six years now.  My CT scan last week was negative.

I became Stage IV in 2007.  Mets surgically removed from each lung (12/07 and 2/08) brain (7/08) and small intestine (1/10).  I participated in a vaccine trial summer/fall of 2009.  I've been NED since the small intestine met was removed – almost six years now.  My CT scan last week was negative.

Stage 3A – 1 year NED with good scans 2 weeks ago.  11 more Interferon shots left (no let's not have that debate again)….so finishing right before XMAS and I will have my life back.  

So it is going to be a good year going into 2016.

Best to all…Michel

Stage 3A – 1 year NED with good scans 2 weeks ago.  11 more Interferon shots left (no let's not have that debate again)….so finishing right before XMAS and I will have my life back.  

So it is going to be a good year going into 2016.

Best to all…Michel

Stage 3A – 1 year NED with good scans 2 weeks ago.  11 more Interferon shots left (no let's not have that debate again)….so finishing right before XMAS and I will have my life back.  

So it is going to be a good year going into 2016.

Best to all…Michel

Just got on, after seldom checking site for years, to ask about best care near Phoenix, as we are moving.  I saw this, and am glad to post my husband is 6 years NED.  Removed primary in back and all inguinal and iliac nodes at UCSF. He is stage 3C.  He has lymphedema in left leg, but no recurrence.  Treatment was interferon, stopping one month short of the full year.  Life is good, we are blessed.

Just got on, after seldom checking site for years, to ask about best care near Phoenix, as we are moving.  I saw this, and am glad to post my husband is 6 years NED.  Removed primary in back and all inguinal and iliac nodes at UCSF. He is stage 3C.  He has lymphedema in left leg, but no recurrence.  Treatment was interferon, stopping one month short of the full year.  Life is good, we are blessed.

Just got on, after seldom checking site for years, to ask about best care near Phoenix, as we are moving.  I saw this, and am glad to post my husband is 6 years NED.  Removed primary in back and all inguinal and iliac nodes at UCSF. He is stage 3C.  He has lymphedema in left leg, but no recurrence.  Treatment was interferon, stopping one month short of the full year.  Life is good, we are blessed.

Diagnosed Stage 3 in 1998.  Aside from a local recurrence in 2000, I was NED until 2011 when it was found in my lungs.  After trying several recently FDA approved drugs, my PET scan last showed that I am NED again.  These new drugs give hope to us all!  Hang in there all!

Diagnosed Stage 3 in 1998.  Aside from a local recurrence in 2000, I was NED until 2011 when it was found in my lungs.  After trying several recently FDA approved drugs, my PET scan last showed that I am NED again.  These new drugs give hope to us all!  Hang in there all!

Diagnosed Stage 3 in 1998.  Aside from a local recurrence in 2000, I was NED until 2011 when it was found in my lungs.  After trying several recently FDA approved drugs, my PET scan last showed that I am NED again.  These new drugs give hope to us all!  Hang in there all!

My Mom was diagnosed in November of 2013 as Stage IV at 77.  She was told that she had no brain mets, but she did.  Luckily she saw 3 melanoma specialists and the 3rd caught the 3 brain mets that were missed…  

In December she had SRS (gamma knife radiation) for 8 brain mets. The doctor missed one and thought it was a blood vessel…  She started Yervoy 4 days after SRS treatment. Her tumors started changing 3 or 4 days after treatment.  Some were gone by week 6…  She got colitis, but was able to have 3 treatments of Yervoy…

In April of 2014 she had SRS again to treat 17 new brain mets…  (Unfortunately she was seeing a terrible neuro-oncologist  and radiology oncologist…)  All treatment was move to USC on Los Angeles- They are the BEST!

Ended up with a craniotomy in June of 2015 for a reoccurrence of a treated brain met.  In August she had a new brain met and had SRS again.

With all of this she has had no cognitive difficulties and the thing she's complained the most about was thrush. That she says is what was going to kill her. NOT the cancer.

She's on Keytruda now because of the reoccurrence and the newly treated brain met and will have her first CT scan this week after her 4th dose of Keytruda.  

Yervoy took care of most of her cancer and she's had very few problems except the misdiagnoses, which could have killed her.  This is why I tell everyone to get more than one opinion on treatment and not to be afraid of seeing out another opinion even in the mist of treatment  Simply put, if we had stayed with the original "team" I doubt that she would be alive today.

I'm expecting that the scan this week will be better than the last one. Back in June of this year the only tumors she had outside her brain were in her trunk. They were .3 to .6 MM  and were down from 6 that were 5 to 13 MM.  Everything on top of her head and neck, 18 tumors with one being the size of a small birds egg, had disappeared with Yervoy…

My Mom will be 80 in March and she does whatever she wants and has more energy and that I do.  She definitely does not act her age!  And her hair color is coming back. She was 100% white and now its a bit of everything…

My Mom was diagnosed in November of 2013 as Stage IV at 77.  She was told that she had no brain mets, but she did.  Luckily she saw 3 melanoma specialists and the 3rd caught the 3 brain mets that were missed…  

In December she had SRS (gamma knife radiation) for 8 brain mets. The doctor missed one and thought it was a blood vessel…  She started Yervoy 4 days after SRS treatment. Her tumors started changing 3 or 4 days after treatment.  Some were gone by week 6…  She got colitis, but was able to have 3 treatments of Yervoy…

In April of 2014 she had SRS again to treat 17 new brain mets…  (Unfortunately she was seeing a terrible neuro-oncologist  and radiology oncologist…)  All treatment was move to USC on Los Angeles- They are the BEST!

Ended up with a craniotomy in June of 2015 for a reoccurrence of a treated brain met.  In August she had a new brain met and had SRS again.

With all of this she has had no cognitive difficulties and the thing she's complained the most about was thrush. That she says is what was going to kill her. NOT the cancer.

She's on Keytruda now because of the reoccurrence and the newly treated brain met and will have her first CT scan this week after her 4th dose of Keytruda.  

Yervoy took care of most of her cancer and she's had very few problems except the misdiagnoses, which could have killed her.  This is why I tell everyone to get more than one opinion on treatment and not to be afraid of seeing out another opinion even in the mist of treatment  Simply put, if we had stayed with the original "team" I doubt that she would be alive today.

I'm expecting that the scan this week will be better than the last one. Back in June of this year the only tumors she had outside her brain were in her trunk. They were .3 to .6 MM  and were down from 6 that were 5 to 13 MM.  Everything on top of her head and neck, 18 tumors with one being the size of a small birds egg, had disappeared with Yervoy…

My Mom will be 80 in March and she does whatever she wants and has more energy and that I do.  She definitely does not act her age!  And her hair color is coming back. She was 100% white and now its a bit of everything…

My Mom was diagnosed in November of 2013 as Stage IV at 77.  She was told that she had no brain mets, but she did.  Luckily she saw 3 melanoma specialists and the 3rd caught the 3 brain mets that were missed…  

In December she had SRS (gamma knife radiation) for 8 brain mets. The doctor missed one and thought it was a blood vessel…  She started Yervoy 4 days after SRS treatment. Her tumors started changing 3 or 4 days after treatment.  Some were gone by week 6…  She got colitis, but was able to have 3 treatments of Yervoy…

In April of 2014 she had SRS again to treat 17 new brain mets…  (Unfortunately she was seeing a terrible neuro-oncologist  and radiology oncologist…)  All treatment was move to USC on Los Angeles- They are the BEST!

Ended up with a craniotomy in June of 2015 for a reoccurrence of a treated brain met.  In August she had a new brain met and had SRS again.

With all of this she has had no cognitive difficulties and the thing she's complained the most about was thrush. That she says is what was going to kill her. NOT the cancer.

She's on Keytruda now because of the reoccurrence and the newly treated brain met and will have her first CT scan this week after her 4th dose of Keytruda.  

Yervoy took care of most of her cancer and she's had very few problems except the misdiagnoses, which could have killed her.  This is why I tell everyone to get more than one opinion on treatment and not to be afraid of seeing out another opinion even in the mist of treatment  Simply put, if we had stayed with the original "team" I doubt that she would be alive today.

I'm expecting that the scan this week will be better than the last one. Back in June of this year the only tumors she had outside her brain were in her trunk. They were .3 to .6 MM  and were down from 6 that were 5 to 13 MM.  Everything on top of her head and neck, 18 tumors with one being the size of a small birds egg, had disappeared with Yervoy…

My Mom will be 80 in March and she does whatever she wants and has more energy and that I do.  She definitely does not act her age!  And her hair color is coming back. She was 100% white and now its a bit of everything…

Agreed…….those postive stories go along way…even for those of not so new…BUT dealing with new recurrences…..sometimes its hard to stay optomistic……..

Just wanted to make that one year mark…..and havent been able to….two recurrences each about 1 year apart…

How not to worry so much about what is next…hoping to stay stage III and no further….

LOVE to read others good stories….

Keep em coming!

Thanks ANON.

Agreed…….those postive stories go along way…even for those of not so new…BUT dealing with new recurrences…..sometimes its hard to stay optomistic……..

Just wanted to make that one year mark…..and havent been able to….two recurrences each about 1 year apart…

How not to worry so much about what is next…hoping to stay stage III and no further….

LOVE to read others good stories….

Keep em coming!

Thanks ANON.

Agreed…….those postive stories go along way…even for those of not so new…BUT dealing with new recurrences…..sometimes its hard to stay optomistic……..

Just wanted to make that one year mark…..and havent been able to….two recurrences each about 1 year apart…

How not to worry so much about what is next…hoping to stay stage III and no further….

LOVE to read others good stories….

Keep em coming!

Thanks ANON.

Diagnosed Advanced Stage 4 with very aggressive widespread (neck, jaw, vertebrae, lungs, leg bones, calf muscle) tumor growth, Fall 2013. Started ipi/nivo trial January 2014, received 4 infusions before liver enzymes spiked and made me ineligible to continue in trial. NED as of April 2014 and continued PET/CT scans have remained NED since. I received 4 doses, total, of ipi 3mg/kg and nivo 1mg/kg and was, luckily, a complete responder.

dvd

daveschronicle.blogspot.com

Diagnosed Advanced Stage 4 with very aggressive widespread (neck, jaw, vertebrae, lungs, leg bones, calf muscle) tumor growth, Fall 2013. Started ipi/nivo trial January 2014, received 4 infusions before liver enzymes spiked and made me ineligible to continue in trial. NED as of April 2014 and continued PET/CT scans have remained NED since. I received 4 doses, total, of ipi 3mg/kg and nivo 1mg/kg and was, luckily, a complete responder.

dvd

daveschronicle.blogspot.com

Diagnosed Advanced Stage 4 with very aggressive widespread (neck, jaw, vertebrae, lungs, leg bones, calf muscle) tumor growth, Fall 2013. Started ipi/nivo trial January 2014, received 4 infusions before liver enzymes spiked and made me ineligible to continue in trial. NED as of April 2014 and continued PET/CT scans have remained NED since. I received 4 doses, total, of ipi 3mg/kg and nivo 1mg/kg and was, luckily, a complete responder.

dvd

daveschronicle.blogspot.com

Stage IIA in 2002, progressed to stage IV in 2009.  Had VATS wedge resection of lung & 23 bags of IL-2, complete responder and NED since 2010 – 5 1/2 years!

Stage IIA in 2002, progressed to stage IV in 2009.  Had VATS wedge resection of lung & 23 bags of IL-2, complete responder and NED since 2010 – 5 1/2 years!

Stage IIA in 2002, progressed to stage IV in 2009.  Had VATS wedge resection of lung & 23 bags of IL-2, complete responder and NED since 2010 – 5 1/2 years!

Diagnosed in December 2010 after surgery to remove an enlarged lymph node in my left arm pit showed melanoma. Post surgical CT scan was clean. YAY! Local surgeon referred me to Johns Hopkins where they removed the remainder of the nodes from that arm pit in January 2011. No further spread was found.

A cancerous mole was never found, so I am Stage III, unknown primary.

My initial lymph node surgery was on November 26, 2010 and I have been NED since that date. 

I was offered 3 treatment options: interferon, observation, or clnical trial. I chose the clinical trial for a vaccine because it offered me a 2/3 chance of getting the drug plus close observation. Did not want interferon due to its nasty side effects and low efficacy rate. Unfortunately the vaccine trial I was in has been closed so I've had to be content with observation, which is what my second choice was anyway.

My next scan will be in January. Am praying that my NED status will remain intact.

Diagnosed in December 2010 after surgery to remove an enlarged lymph node in my left arm pit showed melanoma. Post surgical CT scan was clean. YAY! Local surgeon referred me to Johns Hopkins where they removed the remainder of the nodes from that arm pit in January 2011. No further spread was found.

A cancerous mole was never found, so I am Stage III, unknown primary.

My initial lymph node surgery was on November 26, 2010 and I have been NED since that date. 

I was offered 3 treatment options: interferon, observation, or clnical trial. I chose the clinical trial for a vaccine because it offered me a 2/3 chance of getting the drug plus close observation. Did not want interferon due to its nasty side effects and low efficacy rate. Unfortunately the vaccine trial I was in has been closed so I've had to be content with observation, which is what my second choice was anyway.

My next scan will be in January. Am praying that my NED status will remain intact.

Diagnosed in December 2010 after surgery to remove an enlarged lymph node in my left arm pit showed melanoma. Post surgical CT scan was clean. YAY! Local surgeon referred me to Johns Hopkins where they removed the remainder of the nodes from that arm pit in January 2011. No further spread was found.

A cancerous mole was never found, so I am Stage III, unknown primary.

My initial lymph node surgery was on November 26, 2010 and I have been NED since that date. 

I was offered 3 treatment options: interferon, observation, or clnical trial. I chose the clinical trial for a vaccine because it offered me a 2/3 chance of getting the drug plus close observation. Did not want interferon due to its nasty side effects and low efficacy rate. Unfortunately the vaccine trial I was in has been closed so I've had to be content with observation, which is what my second choice was anyway.

My next scan will be in January. Am praying that my NED status will remain intact.

This is a great idea.

I'm  Stage 3c and currently NERD!!!

Stage 3a since 2008

3C since 2014

Julie

This is a great idea.

I'm  Stage 3c and currently NERD!!!

Stage 3a since 2008

3C since 2014

Julie

This is a great idea.

I'm  Stage 3c and currently NERD!!!

Stage 3a since 2008

3C since 2014

Julie

I'm not NED, but I've been Stage IV for a while.  Spot found on right upper lobe of lung July 2012.  Surgically resected October 2012 and misdiagnosed.  Recurrence in both lungs January 2014 and correctly diagnosed via needle biopsy.  Quit stressful job, changed diet, took supplements, lost weight – disease mostly stable through Sept 2014 scans.  January 2015 scans showed aggressive growth and new spot.  Onc recommended Yervoy.  Instead I went with an MD in New York that uses individualized diet, supplements and detox strategies for cancer.  Started that protocol in March 2015.  I continue to feel very healthy.  Will have scans in mid-December to get update on met status.  Saving the drugs for later if I can.

I'm not NED, but I've been Stage IV for a while.  Spot found on right upper lobe of lung July 2012.  Surgically resected October 2012 and misdiagnosed.  Recurrence in both lungs January 2014 and correctly diagnosed via needle biopsy.  Quit stressful job, changed diet, took supplements, lost weight – disease mostly stable through Sept 2014 scans.  January 2015 scans showed aggressive growth and new spot.  Onc recommended Yervoy.  Instead I went with an MD in New York that uses individualized diet, supplements and detox strategies for cancer.  Started that protocol in March 2015.  I continue to feel very healthy.  Will have scans in mid-December to get update on met status.  Saving the drugs for later if I can.

I'm not NED, but I've been Stage IV for a while.  Spot found on right upper lobe of lung July 2012.  Surgically resected October 2012 and misdiagnosed.  Recurrence in both lungs January 2014 and correctly diagnosed via needle biopsy.  Quit stressful job, changed diet, took supplements, lost weight – disease mostly stable through Sept 2014 scans.  January 2015 scans showed aggressive growth and new spot.  Onc recommended Yervoy.  Instead I went with an MD in New York that uses individualized diet, supplements and detox strategies for cancer.  Started that protocol in March 2015.  I continue to feel very healthy.  Will have scans in mid-December to get update on met status.  Saving the drugs for later if I can.

First primary with positive node in 2003.  No treatment other than surg.

Second primary with no positive nodes 2007.  No treatment other than surg.

Brain, lung and tonsilar lung mets 2010.  Surg to lung and tonsil.  SRS to brain.  Entered NED arm of 2 1/2 year Nivo/Opdivo trial in 2010….still NED today.  Wishing you all my best.  celeste

First primary with positive node in 2003.  No treatment other than surg.

Second primary with no positive nodes 2007.  No treatment other than surg.

Brain, lung and tonsilar lung mets 2010.  Surg to lung and tonsil.  SRS to brain.  Entered NED arm of 2 1/2 year Nivo/Opdivo trial in 2010….still NED today.  Wishing you all my best.  celeste

First primary with positive node in 2003.  No treatment other than surg.

Second primary with no positive nodes 2007.  No treatment other than surg.

Brain, lung and tonsilar lung mets 2010.  Surg to lung and tonsil.  SRS to brain.  Entered NED arm of 2 1/2 year Nivo/Opdivo trial in 2010….still NED today.  Wishing you all my best.  celeste

Hello

This Mike from NJ

Started out stage 1A in 1999 and progressed to stage 3B in 2004 with macro nod ein right axilla.   Had 27 nodes removed, radiation, and then a peptide vaccine trail called Mel-43

Developed lymphedema in right arm and been going for scans ever since and so far all is OK

So stage 3B for 11 years and NED

Take vitamin D3, curcumin, AHCC, and some other items all this time

Good luck to all newly diagnosed.  I was very very unlucky at stage 1A with odds greatly in my favor but very fortunate at 3B status.

Hello

This Mike from NJ

Started out stage 1A in 1999 and progressed to stage 3B in 2004 with macro nod ein right axilla.   Had 27 nodes removed, radiation, and then a peptide vaccine trail called Mel-43

Developed lymphedema in right arm and been going for scans ever since and so far all is OK

So stage 3B for 11 years and NED

Take vitamin D3, curcumin, AHCC, and some other items all this time

Good luck to all newly diagnosed.  I was very very unlucky at stage 1A with odds greatly in my favor but very fortunate at 3B status.

Hello

This Mike from NJ

Started out stage 1A in 1999 and progressed to stage 3B in 2004 with macro nod ein right axilla.   Had 27 nodes removed, radiation, and then a peptide vaccine trail called Mel-43

Developed lymphedema in right arm and been going for scans ever since and so far all is OK

So stage 3B for 11 years and NED

Take vitamin D3, curcumin, AHCC, and some other items all this time

Good luck to all newly diagnosed.  I was very very unlucky at stage 1A with odds greatly in my favor but very fortunate at 3B status.

diagnosed 3b in October 2011. moved to 3c after numerous reoccurances. lots of surgeries, ipi trial, and radiation. I have finally made it 11 months with no reoccurance. fingers crossed it stays that way

diagnosed 3b in October 2011. moved to 3c after numerous reoccurances. lots of surgeries, ipi trial, and radiation. I have finally made it 11 months with no reoccurance. fingers crossed it stays that way

diagnosed 3b in October 2011. moved to 3c after numerous reoccurances. lots of surgeries, ipi trial, and radiation. I have finally made it 11 months with no reoccurance. fingers crossed it stays that way

Diagnosed in Autumn 1991, Stage 4 with lung and sub-q mets; high-dose IL-2 at NIH in 1992 with complete response, and NED ever since–over 23 years now.  Rick in NC

Diagnosed in Autumn 1991, Stage 4 with lung and sub-q mets; high-dose IL-2 at NIH in 1992 with complete response, and NED ever since–over 23 years now.  Rick in NC

Diagnosed in Autumn 1991, Stage 4 with lung and sub-q mets; high-dose IL-2 at NIH in 1992 with complete response, and NED ever since–over 23 years now.  Rick in NC

Stage 1B September 2012 with a left neck melanoma.  SNB clear.  Local recurrance May 2013 with left neck CLND.  64 nodes removed, 1 with macro and 2 small in-transits in same nodal basin-Stage 3C.  Completed dendtritic cell vaccine trial at MSKCC.  NED for 2-1/2 years!

Stage 1B September 2012 with a left neck melanoma.  SNB clear.  Local recurrance May 2013 with left neck CLND.  64 nodes removed, 1 with macro and 2 small in-transits in same nodal basin-Stage 3C.  Completed dendtritic cell vaccine trial at MSKCC.  NED for 2-1/2 years!

Stage 1B September 2012 with a left neck melanoma.  SNB clear.  Local recurrance May 2013 with left neck CLND.  64 nodes removed, 1 with macro and 2 small in-transits in same nodal basin-Stage 3C.  Completed dendtritic cell vaccine trial at MSKCC.  NED for 2-1/2 years!

Initially diagnosed at stage 2c in Feb 2011. Advanced to 3c in Sep 2012. Became stage 4 in Dec 2013 when a tumor was discovered in my small intestine. Following surgery I remain NED and have not yet undergone any treatment beyond surgery.

Kevin

Initially diagnosed at stage 2c in Feb 2011. Advanced to 3c in Sep 2012. Became stage 4 in Dec 2013 when a tumor was discovered in my small intestine. Following surgery I remain NED and have not yet undergone any treatment beyond surgery.

Kevin

Initially diagnosed at stage 2c in Feb 2011. Advanced to 3c in Sep 2012. Became stage 4 in Dec 2013 when a tumor was discovered in my small intestine. Following surgery I remain NED and have not yet undergone any treatment beyond surgery.

Kevin

I'm bumping this up for Chase, whose sister was just diagnosed with Stage IV.  

I'm bumping this up for Chase, whose sister was just diagnosed with Stage IV.  

I'm bumping this up for Chase, whose sister was just diagnosed with Stage IV.