Stage 3 Wait and See?

I did watch and wait-stage 3b-2013-turned down interferon based on mayo oncologists advice. He said interferon didn't work and I'd be sick for a year and statistically it may add a year to my life-but he would never do it. NED for 4 years so far

I did watch and wait-stage 3b-2013-turned down interferon based on mayo oncologists advice. He said interferon didn't work and I'd be sick for a year and statistically it may add a year to my life-but he would never do it. NED for 4 years so far

I did watch and wait-stage 3b-2013-turned down interferon based on mayo oncologists advice. He said interferon didn't work and I'd be sick for a year and statistically it may add a year to my life-but he would never do it. NED for 4 years so far

Hi,

I was diagnosed with stage 3a melanoma back in late May. 3/mm2. No ulceration and negative for extracapsular extension. I had a WLE and SLNB back in July. I had one lymph node removed which came back positive. I consulted with my docs at the University of KU Cancer Center, MDA and Sloan Kettering and they all recommended that I have the CLND which I decided not to have.

I started on Yervoy 10mg back on 8/15 and had the second dose on 9/20. Didn't tolerate the Yervoy very well at all. Lots of GI issues and was diagnosed with colitis back in early October after having a colonoscopy so no more Yervoy for me. Treating the colitis since mid October and getting better each day but just a little bit. I am considered to have NED. No other treatments are available for me at this point. I have my first scans scheduled for 12/8. The Yervoy definitely "revved" up my immune system but apparently too much for me to tolerate.

I too am now taking the watch and wait approach and I'm at peace with that. I also have never second guessed myself on not having the CLND….it was simply a personal choice and again, I'm at peace with that decision as well.

Best of luck to your daughter and for your family!!

Stacy

Hi,

I was diagnosed with stage 3a melanoma back in late May. 3/mm2. No ulceration and negative for extracapsular extension. I had a WLE and SLNB back in July. I had one lymph node removed which came back positive. I consulted with my docs at the University of KU Cancer Center, MDA and Sloan Kettering and they all recommended that I have the CLND which I decided not to have.

I started on Yervoy 10mg back on 8/15 and had the second dose on 9/20. Didn't tolerate the Yervoy very well at all. Lots of GI issues and was diagnosed with colitis back in early October after having a colonoscopy so no more Yervoy for me. Treating the colitis since mid October and getting better each day but just a little bit. I am considered to have NED. No other treatments are available for me at this point. I have my first scans scheduled for 12/8. The Yervoy definitely "revved" up my immune system but apparently too much for me to tolerate.

I too am now taking the watch and wait approach and I'm at peace with that. I also have never second guessed myself on not having the CLND….it was simply a personal choice and again, I'm at peace with that decision as well.

Best of luck to your daughter and for your family!!

Stacy

Hi,

I was diagnosed with stage 3a melanoma back in late May. 3/mm2. No ulceration and negative for extracapsular extension. I had a WLE and SLNB back in July. I had one lymph node removed which came back positive. I consulted with my docs at the University of KU Cancer Center, MDA and Sloan Kettering and they all recommended that I have the CLND which I decided not to have.

I started on Yervoy 10mg back on 8/15 and had the second dose on 9/20. Didn't tolerate the Yervoy very well at all. Lots of GI issues and was diagnosed with colitis back in early October after having a colonoscopy so no more Yervoy for me. Treating the colitis since mid October and getting better each day but just a little bit. I am considered to have NED. No other treatments are available for me at this point. I have my first scans scheduled for 12/8. The Yervoy definitely "revved" up my immune system but apparently too much for me to tolerate.

I too am now taking the watch and wait approach and I'm at peace with that. I also have never second guessed myself on not having the CLND….it was simply a personal choice and again, I'm at peace with that decision as well.

Best of luck to your daughter and for your family!!

Stacy

I am sorry your daughter is going through this, particularly just as she is moving out into the world.

The counsel about treatment for Stage III melanoma is widely varied. A lot depends on the next level of staging: IIIa, IIIb, or IIIc. For example, a recent study showed a particular drug–"ipi"–is more effective in preventing recurrence that interferon, but has much more challenging side effects. The recommendation was that ipi be used only for Stage IIIc patients, and then only by doctors who have a lot of experience with this drug.

You may want to read this piece the MRF did for Stage III patients: https://www.melanoma.org/sites/default/files/StageIIIPiece.pdf

The good thing is that you are at a place that has a very good melanoma program, and that is an important step.

Tim–MRF

I am sorry your daughter is going through this, particularly just as she is moving out into the world.

The counsel about treatment for Stage III melanoma is widely varied. A lot depends on the next level of staging: IIIa, IIIb, or IIIc. For example, a recent study showed a particular drug–"ipi"–is more effective in preventing recurrence that interferon, but has much more challenging side effects. The recommendation was that ipi be used only for Stage IIIc patients, and then only by doctors who have a lot of experience with this drug.

You may want to read this piece the MRF did for Stage III patients: https://www.melanoma.org/sites/default/files/StageIIIPiece.pdf

The good thing is that you are at a place that has a very good melanoma program, and that is an important step.

Tim–MRF

I am sorry your daughter is going through this, particularly just as she is moving out into the world.

The counsel about treatment for Stage III melanoma is widely varied. A lot depends on the next level of staging: IIIa, IIIb, or IIIc. For example, a recent study showed a particular drug–"ipi"–is more effective in preventing recurrence that interferon, but has much more challenging side effects. The recommendation was that ipi be used only for Stage IIIc patients, and then only by doctors who have a lot of experience with this drug.

You may want to read this piece the MRF did for Stage III patients: https://www.melanoma.org/sites/default/files/StageIIIPiece.pdf

The good thing is that you are at a place that has a very good melanoma program, and that is an important step.

Tim–MRF

Hello, I'm sorry to hear of your daughters diagnosis.  I too have a very similar story, however I was 47 when diagnosed with Stage 3A in February of this year.  I had a cluster of 10 cells that were .05mm that traveled to the lymph nodes in my right groin.  I too had the option of a CLND, and was able to talk to two surgeons who talked about their experiences with their patients developing Lymphedema.  They both were at 50% and the thought of developing this on top of my cancer that could potentially be life altering (my leg could swell so much I could no longer be active), I choose not to have a CLND.  I doctor at the Mayo Clinic in Rochester, MN and they recommended the wait and watch approach too.  At first I thought no way, get this cancer out of me and I wanted to do what ever it took.  Because my original surgery was not that they Mayo clinic, there was some confusion as to ulceration.  Because the Mayo had to call for my original slides, it gave me time to research, talk to doctors and family/friends.  Family and friends were behind any decision and most suggest do whatever you can do to get the cancer out of your body.  My daughters doctor shed some light that really helped me be at piece, he said what people loose site of is the quality of life.  Everyone wants quantity, they want to live as long as possible, but they are not thinking about how the treatments will in some cases break you down.  My family and friends kept asking me what I wanted, my response was always "I just want to be me, the me I was before this diagnosis".  I actually listened to myself and agreed that the watch and wait was the right choice for me.   I get to be me with no physical treatments, but do struggle with the mental abuse this disease leave with you.  My watch and watch treatment plan consists of every three months, a PET scan, Ultra Sound of my groin, Blood work, meet with my oncology team and meet with my melanoma dermatologist doctor who gives me a thorough full body exam.  To date there has been NO EVIDENCE of this disease in my body and the best part is, I GET TO BE ME, and not have any type of poison administered into my body.  I pray and thank God everyday that I will remain free of cancer forever!  The mental abuse is like a roller coaster ride.  I feel great after each visit that confirms no evidence of the disease, but then become edgy and worried as the next set of appointments approach.  Hopefully in time that will ease a bit.   I believe this is the right path for me and I hope you can share this with your daughter and too feel at ease as she makes her decision.  Prayers for your daughter and your family.

~Kris

Hello, I'm sorry to hear of your daughters diagnosis.  I too have a very similar story, however I was 47 when diagnosed with Stage 3A in February of this year.  I had a cluster of 10 cells that were .05mm that traveled to the lymph nodes in my right groin.  I too had the option of a CLND, and was able to talk to two surgeons who talked about their experiences with their patients developing Lymphedema.  They both were at 50% and the thought of developing this on top of my cancer that could potentially be life altering (my leg could swell so much I could no longer be active), I choose not to have a CLND.  I doctor at the Mayo Clinic in Rochester, MN and they recommended the wait and watch approach too.  At first I thought no way, get this cancer out of me and I wanted to do what ever it took.  Because my original surgery was not that they Mayo clinic, there was some confusion as to ulceration.  Because the Mayo had to call for my original slides, it gave me time to research, talk to doctors and family/friends.  Family and friends were behind any decision and most suggest do whatever you can do to get the cancer out of your body.  My daughters doctor shed some light that really helped me be at piece, he said what people loose site of is the quality of life.  Everyone wants quantity, they want to live as long as possible, but they are not thinking about how the treatments will in some cases break you down.  My family and friends kept asking me what I wanted, my response was always "I just want to be me, the me I was before this diagnosis".  I actually listened to myself and agreed that the watch and wait was the right choice for me.   I get to be me with no physical treatments, but do struggle with the mental abuse this disease leave with you.  My watch and watch treatment plan consists of every three months, a PET scan, Ultra Sound of my groin, Blood work, meet with my oncology team and meet with my melanoma dermatologist doctor who gives me a thorough full body exam.  To date there has been NO EVIDENCE of this disease in my body and the best part is, I GET TO BE ME, and not have any type of poison administered into my body.  I pray and thank God everyday that I will remain free of cancer forever!  The mental abuse is like a roller coaster ride.  I feel great after each visit that confirms no evidence of the disease, but then become edgy and worried as the next set of appointments approach.  Hopefully in time that will ease a bit.   I believe this is the right path for me and I hope you can share this with your daughter and too feel at ease as she makes her decision.  Prayers for your daughter and your family.

~Kris

Hello, I'm sorry to hear of your daughters diagnosis.  I too have a very similar story, however I was 47 when diagnosed with Stage 3A in February of this year.  I had a cluster of 10 cells that were .05mm that traveled to the lymph nodes in my right groin.  I too had the option of a CLND, and was able to talk to two surgeons who talked about their experiences with their patients developing Lymphedema.  They both were at 50% and the thought of developing this on top of my cancer that could potentially be life altering (my leg could swell so much I could no longer be active), I choose not to have a CLND.  I doctor at the Mayo Clinic in Rochester, MN and they recommended the wait and watch approach too.  At first I thought no way, get this cancer out of me and I wanted to do what ever it took.  Because my original surgery was not that they Mayo clinic, there was some confusion as to ulceration.  Because the Mayo had to call for my original slides, it gave me time to research, talk to doctors and family/friends.  Family and friends were behind any decision and most suggest do whatever you can do to get the cancer out of your body.  My daughters doctor shed some light that really helped me be at piece, he said what people loose site of is the quality of life.  Everyone wants quantity, they want to live as long as possible, but they are not thinking about how the treatments will in some cases break you down.  My family and friends kept asking me what I wanted, my response was always "I just want to be me, the me I was before this diagnosis".  I actually listened to myself and agreed that the watch and wait was the right choice for me.   I get to be me with no physical treatments, but do struggle with the mental abuse this disease leave with you.  My watch and watch treatment plan consists of every three months, a PET scan, Ultra Sound of my groin, Blood work, meet with my oncology team and meet with my melanoma dermatologist doctor who gives me a thorough full body exam.  To date there has been NO EVIDENCE of this disease in my body and the best part is, I GET TO BE ME, and not have any type of poison administered into my body.  I pray and thank God everyday that I will remain free of cancer forever!  The mental abuse is like a roller coaster ride.  I feel great after each visit that confirms no evidence of the disease, but then become edgy and worried as the next set of appointments approach.  Hopefully in time that will ease a bit.   I believe this is the right path for me and I hope you can share this with your daughter and too feel at ease as she makes her decision.  Prayers for your daughter and your family.

~Kris

Hi there, I read your post this morning and wanted to reach out. I'm 25 and was diagnosed stage 3b in July of this year. Original primary was .86mm, non-ulcerated with a 1/mm2 mitosis. It was on my head and neck region. On my SNLB, one node in my neck was found to have focally present cells which were about <1% of the area within the node. A tiny amount. I then had a CLND of my neck wth 30 extra nodes removed, no further involvement.

All said, the healing/physical therapy has gone smoothly-no lymphadema. Fortunately I've been all clear otherwise, I spend about 6 days a week at the gym and have been refocusing my diet.  What the entire process of standard of care opened me up to is, options. All of this is technical though, its the mechanics of treatment and while we share it-none of these situations are ever exactly the same. Your daughter is young, and just like she may be, I grappled with many of the harsh unknowns with this disease. I still do. What I found truly helpful for me was talking to millenials who have faced cancer, it was really important for me to talk to people with mel at my stage.

If you or your daughter ever need to talk, I would be happy to via email. I start a clinical trail in December that randomizes me between pembrolizumab (keytruda) and ipilipumab (yervoy). I could certainly explain my decision making here, as I  understand the toxicity of some of these drugs.

Best wishes to your daughter and your family.

Hi there, I read your post this morning and wanted to reach out. I'm 25 and was diagnosed stage 3b in July of this year. Original primary was .86mm, non-ulcerated with a 1/mm2 mitosis. It was on my head and neck region. On my SNLB, one node in my neck was found to have focally present cells which were about <1% of the area within the node. A tiny amount. I then had a CLND of my neck wth 30 extra nodes removed, no further involvement.

All said, the healing/physical therapy has gone smoothly-no lymphadema. Fortunately I've been all clear otherwise, I spend about 6 days a week at the gym and have been refocusing my diet.  What the entire process of standard of care opened me up to is, options. All of this is technical though, its the mechanics of treatment and while we share it-none of these situations are ever exactly the same. Your daughter is young, and just like she may be, I grappled with many of the harsh unknowns with this disease. I still do. What I found truly helpful for me was talking to millenials who have faced cancer, it was really important for me to talk to people with mel at my stage.

If you or your daughter ever need to talk, I would be happy to via email. I start a clinical trail in December that randomizes me between pembrolizumab (keytruda) and ipilipumab (yervoy). I could certainly explain my decision making here, as I  understand the toxicity of some of these drugs.

Best wishes to your daughter and your family.

Hi there, I read your post this morning and wanted to reach out. I'm 25 and was diagnosed stage 3b in July of this year. Original primary was .86mm, non-ulcerated with a 1/mm2 mitosis. It was on my head and neck region. On my SNLB, one node in my neck was found to have focally present cells which were about <1% of the area within the node. A tiny amount. I then had a CLND of my neck wth 30 extra nodes removed, no further involvement.

All said, the healing/physical therapy has gone smoothly-no lymphadema. Fortunately I've been all clear otherwise, I spend about 6 days a week at the gym and have been refocusing my diet.  What the entire process of standard of care opened me up to is, options. All of this is technical though, its the mechanics of treatment and while we share it-none of these situations are ever exactly the same. Your daughter is young, and just like she may be, I grappled with many of the harsh unknowns with this disease. I still do. What I found truly helpful for me was talking to millenials who have faced cancer, it was really important for me to talk to people with mel at my stage.

If you or your daughter ever need to talk, I would be happy to via email. I start a clinical trail in December that randomizes me between pembrolizumab (keytruda) and ipilipumab (yervoy). I could certainly explain my decision making here, as I  understand the toxicity of some of these drugs.

Best wishes to your daughter and your family.