stage 4 questions

1. Stage IV diagnosis was my Christmas present this year… not a very good one, right? So for me it has only been a few months.

2. Mine metastasized to my small intenstine.

3. Surgery in Feb 2014 to remove the tumor and about a foot of my small intestine. Other than that, no treatment since I am considered NED. Options for NED are limited.

4. I feel fine. Recovery from surgery was not terrible. 6 weeks post op and I was hitting the gym with no ill effects. I missed 1 week of work due to surgery, then worked from home for 1 week, and then was back to the office.

Kevin

1. Stage IV diagnosis was my Christmas present this year… not a very good one, right? So for me it has only been a few months.

2. Mine metastasized to my small intenstine.

3. Surgery in Feb 2014 to remove the tumor and about a foot of my small intestine. Other than that, no treatment since I am considered NED. Options for NED are limited.

4. I feel fine. Recovery from surgery was not terrible. 6 weeks post op and I was hitting the gym with no ill effects. I missed 1 week of work due to surgery, then worked from home for 1 week, and then was back to the office.

Kevin

1. Stage IV diagnosis was my Christmas present this year… not a very good one, right? So for me it has only been a few months.

2. Mine metastasized to my small intenstine.

3. Surgery in Feb 2014 to remove the tumor and about a foot of my small intestine. Other than that, no treatment since I am considered NED. Options for NED are limited.

4. I feel fine. Recovery from surgery was not terrible. 6 weeks post op and I was hitting the gym with no ill effects. I missed 1 week of work due to surgery, then worked from home for 1 week, and then was back to the office.

Kevin

Hey Anon,

Questions like this have been posed before, so you can probably use the search option to get more info, but…

2003 – Original primary to back (removed surgically with R ax lymphadenectomy – 1 + node)

2007 – Second primary to left forearm (removed surgically with L ax lyphadenectomy – NO + nodes)

April 2010 – Stage IV with:  Met to lung, subsequent MRI of brain = met to brain.  SRS to brain, Lobectomy to lung.  Later in 2010 = met to tonsil. Removed surgically.

Dec 2010 – NED, but entered 2 1/2 year trial of Nivolumab (BMS anti-PD1).  Still NED.

Did take a couple months off  work in 2010 with brain and lung issues.  Otherwise, worked 12 hours days, 3 days a week, through all of it, including trial (tiredness, rashes, arthralgias, and mouth ulcers not withstanding) and remain NED today.

Wishing you the best. C

Hey Anon,

Questions like this have been posed before, so you can probably use the search option to get more info, but…

2003 – Original primary to back (removed surgically with R ax lymphadenectomy – 1 + node)

2007 – Second primary to left forearm (removed surgically with L ax lyphadenectomy – NO + nodes)

April 2010 – Stage IV with:  Met to lung, subsequent MRI of brain = met to brain.  SRS to brain, Lobectomy to lung.  Later in 2010 = met to tonsil. Removed surgically.

Dec 2010 – NED, but entered 2 1/2 year trial of Nivolumab (BMS anti-PD1).  Still NED.

Did take a couple months off  work in 2010 with brain and lung issues.  Otherwise, worked 12 hours days, 3 days a week, through all of it, including trial (tiredness, rashes, arthralgias, and mouth ulcers not withstanding) and remain NED today.

Wishing you the best. C

Hey Anon,

Questions like this have been posed before, so you can probably use the search option to get more info, but…

2003 – Original primary to back (removed surgically with R ax lymphadenectomy – 1 + node)

2007 – Second primary to left forearm (removed surgically with L ax lyphadenectomy – NO + nodes)

April 2010 – Stage IV with:  Met to lung, subsequent MRI of brain = met to brain.  SRS to brain, Lobectomy to lung.  Later in 2010 = met to tonsil. Removed surgically.

Dec 2010 – NED, but entered 2 1/2 year trial of Nivolumab (BMS anti-PD1).  Still NED.

Did take a couple months off  work in 2010 with brain and lung issues.  Otherwise, worked 12 hours days, 3 days a week, through all of it, including trial (tiredness, rashes, arthralgias, and mouth ulcers not withstanding) and remain NED today.

Wishing you the best. C

Hello, 

i was diagnosed stage 1 February 2010 with a lesion on my right ear. Treated with local wide excision.

September 2011 I was hospitalized with internal bleeding. Melanoma had metastasized to my ovary. Stage 4. It was surgically removed before pathology was confirmed . PET/CT confirmed  1 lymph node and 6 other subcutaneous nodules. Treated with high dose IL-2 from 10/11-2/12. I have been NED since 3/12. I feel great physically. The emotional recovery, if you call it that, has been the most challenging. 

Life is a gift!

Hello, 

i was diagnosed stage 1 February 2010 with a lesion on my right ear. Treated with local wide excision.

September 2011 I was hospitalized with internal bleeding. Melanoma had metastasized to my ovary. Stage 4. It was surgically removed before pathology was confirmed . PET/CT confirmed  1 lymph node and 6 other subcutaneous nodules. Treated with high dose IL-2 from 10/11-2/12. I have been NED since 3/12. I feel great physically. The emotional recovery, if you call it that, has been the most challenging. 

Life is a gift!

Hello, 

i was diagnosed stage 1 February 2010 with a lesion on my right ear. Treated with local wide excision.

September 2011 I was hospitalized with internal bleeding. Melanoma had metastasized to my ovary. Stage 4. It was surgically removed before pathology was confirmed . PET/CT confirmed  1 lymph node and 6 other subcutaneous nodules. Treated with high dose IL-2 from 10/11-2/12. I have been NED since 3/12. I feel great physically. The emotional recovery, if you call it that, has been the most challenging. 

Life is a gift!

1. Stage IV since January 2013 (originally stage 3 April 2011)

2. Metastasized to lung 

3. No treatments at all

4. Asymptomatic since day1.  Feel the same as did before initial diagnoses. 

NED for over a year and plan to keep it that way 🙂

hope this information helps. 

1. Stage IV since January 2013 (originally stage 3 April 2011)

2. Metastasized to lung 

3. No treatments at all

4. Asymptomatic since day1.  Feel the same as did before initial diagnoses. 

NED for over a year and plan to keep it that way 🙂

hope this information helps. 

1. Stage IV since January 2013 (originally stage 3 April 2011)

2. Metastasized to lung 

3. No treatments at all

4. Asymptomatic since day1.  Feel the same as did before initial diagnoses. 

NED for over a year and plan to keep it that way 🙂

hope this information helps. 

I have been stage IV since 2005. Have had mets to left calf muscle, left popliteal nodes, left groin nodes, right adrenal gland and nodes and muscles in that area, too, pancreas, abdomen, mesentery nodes, right axillary nodes. I think that's it. My profile shown the various treatments, etc. I have felt well at times and terrible at times, depending on the severity of side effects or surgical recovery. Currently in week 36 of PD1 trial and have had an 80% response at this time. Feeling well with exception of fatigue, which is likely endocrine related and being addressed next visit. On thyroid supplement ( thyroid issues due to PD1) and low dose prednisone ( due to adrenal insufficiency as side effet from treatments – with ipi, and or PD1). 

Tina

I have been stage IV since 2005. Have had mets to left calf muscle, left popliteal nodes, left groin nodes, right adrenal gland and nodes and muscles in that area, too, pancreas, abdomen, mesentery nodes, right axillary nodes. I think that's it. My profile shown the various treatments, etc. I have felt well at times and terrible at times, depending on the severity of side effects or surgical recovery. Currently in week 36 of PD1 trial and have had an 80% response at this time. Feeling well with exception of fatigue, which is likely endocrine related and being addressed next visit. On thyroid supplement ( thyroid issues due to PD1) and low dose prednisone ( due to adrenal insufficiency as side effet from treatments – with ipi, and or PD1). 

Tina

I have been stage IV since 2005. Have had mets to left calf muscle, left popliteal nodes, left groin nodes, right adrenal gland and nodes and muscles in that area, too, pancreas, abdomen, mesentery nodes, right axillary nodes. I think that's it. My profile shown the various treatments, etc. I have felt well at times and terrible at times, depending on the severity of side effects or surgical recovery. Currently in week 36 of PD1 trial and have had an 80% response at this time. Feeling well with exception of fatigue, which is likely endocrine related and being addressed next visit. On thyroid supplement ( thyroid issues due to PD1) and low dose prednisone ( due to adrenal insufficiency as side effet from treatments – with ipi, and or PD1). 

Tina

Stage IV since July 2009

Initally diagnosed stage 2A in 2002

1 met to right lung, 1 met to pectoral muscle

Surgery to remove lung met, HD IL-2 only removed muscle met.

NED since July 2010

Kept working except when recovering from lung surgery and active treatment with IL-2.  All in all I took 9 weeks off total since the beginning.

Still feel fine, work full time & just started a business = 2 Girls Farm LLC raising sheep, goats, and livestock guardian dogs.

Yep, I guess it was worth committing to that 2 year cell phone plan *smirk*.

I am one of the very rare durable remissions and will probably never hear from mel again but still get scans although I am negotiating prolinged intervals between them.

Stage IV since July 2009

Initally diagnosed stage 2A in 2002

1 met to right lung, 1 met to pectoral muscle

Surgery to remove lung met, HD IL-2 only removed muscle met.

NED since July 2010

Kept working except when recovering from lung surgery and active treatment with IL-2.  All in all I took 9 weeks off total since the beginning.

Still feel fine, work full time & just started a business = 2 Girls Farm LLC raising sheep, goats, and livestock guardian dogs.

Yep, I guess it was worth committing to that 2 year cell phone plan *smirk*.

I am one of the very rare durable remissions and will probably never hear from mel again but still get scans although I am negotiating prolinged intervals between them.

Stage IV since July 2009

Initally diagnosed stage 2A in 2002

1 met to right lung, 1 met to pectoral muscle

Surgery to remove lung met, HD IL-2 only removed muscle met.

NED since July 2010

Kept working except when recovering from lung surgery and active treatment with IL-2.  All in all I took 9 weeks off total since the beginning.

Still feel fine, work full time & just started a business = 2 Girls Farm LLC raising sheep, goats, and livestock guardian dogs.

Yep, I guess it was worth committing to that 2 year cell phone plan *smirk*.

I am one of the very rare durable remissions and will probably never hear from mel again but still get scans although I am negotiating prolinged intervals between them.

Hi,

1.  I have been stage 4 for a year and a half, since Oct 1st 2012.

2.  Original Primary was a 2mm deep melanoma on my upper right arm, back in April 2000.  I think that was stage IIA…but it was so long ago I forget.  Biopsy proved met spread to a lymph node in my right arm pit.  And PET scan showed many other lymph nodes in both arm pits, behind my chestwall plate, wrapped around my heart, and a mass on my liver.

3.  I started pd1 (MK-3475) one month later (Oct 31st, 2012.)  I'm doing well and I've had partial recovery so far.  First 3 months all other lymph nodes went back to normal size and the liver mass disappeared…but the biopsied met node had doubled in size.  By 6 months, the met node had finally responded and has now been getting smaller and smaller every month…and is now down to almost normal size. 

4.  I've been feeling well for most of the pd1 treatment.  I've kept working my full time Mon-Fri 9-5pm job and missed really no work at all.  My side effects are some nausea, rash, and just recently started with some joint pain.

Laurie

Hi,

1.  I have been stage 4 for a year and a half, since Oct 1st 2012.

2.  Original Primary was a 2mm deep melanoma on my upper right arm, back in April 2000.  I think that was stage IIA…but it was so long ago I forget.  Biopsy proved met spread to a lymph node in my right arm pit.  And PET scan showed many other lymph nodes in both arm pits, behind my chestwall plate, wrapped around my heart, and a mass on my liver.

3.  I started pd1 (MK-3475) one month later (Oct 31st, 2012.)  I'm doing well and I've had partial recovery so far.  First 3 months all other lymph nodes went back to normal size and the liver mass disappeared…but the biopsied met node had doubled in size.  By 6 months, the met node had finally responded and has now been getting smaller and smaller every month…and is now down to almost normal size. 

4.  I've been feeling well for most of the pd1 treatment.  I've kept working my full time Mon-Fri 9-5pm job and missed really no work at all.  My side effects are some nausea, rash, and just recently started with some joint pain.

Laurie

Hi,

1.  I have been stage 4 for a year and a half, since Oct 1st 2012.

2.  Original Primary was a 2mm deep melanoma on my upper right arm, back in April 2000.  I think that was stage IIA…but it was so long ago I forget.  Biopsy proved met spread to a lymph node in my right arm pit.  And PET scan showed many other lymph nodes in both arm pits, behind my chestwall plate, wrapped around my heart, and a mass on my liver.

3.  I started pd1 (MK-3475) one month later (Oct 31st, 2012.)  I'm doing well and I've had partial recovery so far.  First 3 months all other lymph nodes went back to normal size and the liver mass disappeared…but the biopsied met node had doubled in size.  By 6 months, the met node had finally responded and has now been getting smaller and smaller every month…and is now down to almost normal size. 

4.  I've been feeling well for most of the pd1 treatment.  I've kept working my full time Mon-Fri 9-5pm job and missed really no work at all.  My side effects are some nausea, rash, and just recently started with some joint pain.

Laurie