New to this site, here’s my story….

Brent,

Welcome to the board but I'm sorry you've had to join us.  After reading your post I had to reply because of my pet peeve.  I hate when I read or hear from somebody that if caught early enough can be cured.   I find I am defending myself so that people don't think I just sat by and let this mole grow and change.    My mole was a little thicker than yours but found in 1979.  In 06 I became stage IV, in 11 it went to the brain.

I'm venting, I'm sorry. 

You are at a fantastic hosptal and have different options.  If you look in the archives section you need to look up JanefromMaine or you can look as sunshield.  She wrote an advice list for IL2 and she talkes about lotions.

Hoping the best in your trial.

Linda

Brent,

Welcome to the board but I'm sorry you've had to join us.  After reading your post I had to reply because of my pet peeve.  I hate when I read or hear from somebody that if caught early enough can be cured.   I find I am defending myself so that people don't think I just sat by and let this mole grow and change.    My mole was a little thicker than yours but found in 1979.  In 06 I became stage IV, in 11 it went to the brain.

I'm venting, I'm sorry. 

You are at a fantastic hosptal and have different options.  If you look in the archives section you need to look up JanefromMaine or you can look as sunshield.  She wrote an advice list for IL2 and she talkes about lotions.

Hoping the best in your trial.

Linda

Brent,

Welcome to the board but I'm sorry you've had to join us.  After reading your post I had to reply because of my pet peeve.  I hate when I read or hear from somebody that if caught early enough can be cured.   I find I am defending myself so that people don't think I just sat by and let this mole grow and change.    My mole was a little thicker than yours but found in 1979.  In 06 I became stage IV, in 11 it went to the brain.

I'm venting, I'm sorry. 

You are at a fantastic hosptal and have different options.  If you look in the archives section you need to look up JanefromMaine or you can look as sunshield.  She wrote an advice list for IL2 and she talkes about lotions.

Hoping the best in your trial.

Linda

This is exactly what scares me. . I'm stage I with < 1mm and everyone tells me not to worry, very early, treatable, etc. . . thinking it's all gone and it's like it never happened.  So many people say and think a lesion < 1mm is "low risk" etc. . .  

This is exactly what scares me. . I'm stage I with < 1mm and everyone tells me not to worry, very early, treatable, etc. . . thinking it's all gone and it's like it never happened.  So many people say and think a lesion < 1mm is "low risk" etc. . .  

This is exactly what scares me. . I'm stage I with < 1mm and everyone tells me not to worry, very early, treatable, etc. . . thinking it's all gone and it's like it never happened.  So many people say and think a lesion < 1mm is "low risk" etc. . .  

Brian,

Sorry you dealing with this and had to join our group, but you are in one of the best places possible. My husband was 41 when he went through HDIL-2 in 2008 and he did oatmeal baths to ease the itching plus lots of lotion. His skin peeled a lot and at one point he had hives. The IL-2 did seem to get rid of his lung mets and he did have additional surgery after that treatment in 2009. He is on 3 years NED since his last surgery. You can read his profile.

Wishing you the best possible results from this treatment.

Rebecca

Brian,

Sorry you dealing with this and had to join our group, but you are in one of the best places possible. My husband was 41 when he went through HDIL-2 in 2008 and he did oatmeal baths to ease the itching plus lots of lotion. His skin peeled a lot and at one point he had hives. The IL-2 did seem to get rid of his lung mets and he did have additional surgery after that treatment in 2009. He is on 3 years NED since his last surgery. You can read his profile.

Wishing you the best possible results from this treatment.

Rebecca

Brian,

Sorry you dealing with this and had to join our group, but you are in one of the best places possible. My husband was 41 when he went through HDIL-2 in 2008 and he did oatmeal baths to ease the itching plus lots of lotion. His skin peeled a lot and at one point he had hives. The IL-2 did seem to get rid of his lung mets and he did have additional surgery after that treatment in 2009. He is on 3 years NED since his last surgery. You can read his profile.

Wishing you the best possible results from this treatment.

Rebecca

Again I find another unlucky fighter on this site.Like you I had a small melanoma (birthmark) on my neck remover 9/10/2001.Stage 1 .Was told by the surgeon after he consulted oncologist that I was "cured".Never even given oppurtunity to meet with oncologist.Fine all "Fixed".Never a second thought.Fast forward to Jan.2011.Small nodule spotted on neck that i originally thoght to be an ingrrown hair.Wait about 2 weeks before made appt. with primary dr.Told him of prior history .he doubted it would be a re-occurence.Had appt to see surgeon.Also doubted it after almost 10 years.Had sonogram done and then the warning light s went off.Had tumor removed early March and told you are Stage4 met. Saw onc. and given standard treatment of dracarbizine.As in most cases   useless course of action. Had to wait for approval of zelboraf on Aug 17 .At time told by Sloan Kettering not to use drug because I would be put in a new trial combining Yervoy & Zelboraf.So after going to Sloan Kettering & seeing Dr. Chapman that there is no such trial.Immediately started on "Z"  and have been on it since.Today I am officially at 13 months and everthing is looking real good.Have been under Dr.Pavlicks care ay NYUCancer Hosp in NYC.Advice to you is get yourself a melanoma specialist as soon as possible.Keep positive and keep praying.Anything I can help you with or quetsios I can answer I am here for you.In my prayers.Beat the Beast.  Al

Again I find another unlucky fighter on this site.Like you I had a small melanoma (birthmark) on my neck remover 9/10/2001.Stage 1 .Was told by the surgeon after he consulted oncologist that I was "cured".Never even given oppurtunity to meet with oncologist.Fine all "Fixed".Never a second thought.Fast forward to Jan.2011.Small nodule spotted on neck that i originally thoght to be an ingrrown hair.Wait about 2 weeks before made appt. with primary dr.Told him of prior history .he doubted it would be a re-occurence.Had appt to see surgeon.Also doubted it after almost 10 years.Had sonogram done and then the warning light s went off.Had tumor removed early March and told you are Stage4 met. Saw onc. and given standard treatment of dracarbizine.As in most cases   useless course of action. Had to wait for approval of zelboraf on Aug 17 .At time told by Sloan Kettering not to use drug because I would be put in a new trial combining Yervoy & Zelboraf.So after going to Sloan Kettering & seeing Dr. Chapman that there is no such trial.Immediately started on "Z"  and have been on it since.Today I am officially at 13 months and everthing is looking real good.Have been under Dr.Pavlicks care ay NYUCancer Hosp in NYC.Advice to you is get yourself a melanoma specialist as soon as possible.Keep positive and keep praying.Anything I can help you with or quetsios I can answer I am here for you.In my prayers.Beat the Beast.  Al

Again I find another unlucky fighter on this site.Like you I had a small melanoma (birthmark) on my neck remover 9/10/2001.Stage 1 .Was told by the surgeon after he consulted oncologist that I was "cured".Never even given oppurtunity to meet with oncologist.Fine all "Fixed".Never a second thought.Fast forward to Jan.2011.Small nodule spotted on neck that i originally thoght to be an ingrrown hair.Wait about 2 weeks before made appt. with primary dr.Told him of prior history .he doubted it would be a re-occurence.Had appt to see surgeon.Also doubted it after almost 10 years.Had sonogram done and then the warning light s went off.Had tumor removed early March and told you are Stage4 met. Saw onc. and given standard treatment of dracarbizine.As in most cases   useless course of action. Had to wait for approval of zelboraf on Aug 17 .At time told by Sloan Kettering not to use drug because I would be put in a new trial combining Yervoy & Zelboraf.So after going to Sloan Kettering & seeing Dr. Chapman that there is no such trial.Immediately started on "Z"  and have been on it since.Today I am officially at 13 months and everthing is looking real good.Have been under Dr.Pavlicks care ay NYUCancer Hosp in NYC.Advice to you is get yourself a melanoma specialist as soon as possible.Keep positive and keep praying.Anything I can help you with or quetsios I can answer I am here for you.In my prayers.Beat the Beast.  Al

Hi Brian,

First, congrats on the wedding!  I wish the two of you great happiness.

My story is very similar to yours.  I had a skin lesion 2.5 years ago and was diagnosed with Stage IV on August 17th, a couple of days after you.  Thye cut mine out along with the sentinel node.  I thought about going to MD Anderson, but selected Moffitt because it's close by. 

I wan't eligible for the PD1 trial, so they are testing for Mage-3 trial.  I should find out next week if I'm in the trial.  Because I'm NED, I don't appear to have many other options other than alpha-interferon or simply waiting.  Thanks for the info on your treatments, I'll be checking for your future posts.

Wishing you and your wife all the best!

Frank

Hi Brian,

First, congrats on the wedding!  I wish the two of you great happiness.

My story is very similar to yours.  I had a skin lesion 2.5 years ago and was diagnosed with Stage IV on August 17th, a couple of days after you.  Thye cut mine out along with the sentinel node.  I thought about going to MD Anderson, but selected Moffitt because it's close by. 

I wan't eligible for the PD1 trial, so they are testing for Mage-3 trial.  I should find out next week if I'm in the trial.  Because I'm NED, I don't appear to have many other options other than alpha-interferon or simply waiting.  Thanks for the info on your treatments, I'll be checking for your future posts.

Wishing you and your wife all the best!

Frank

Hi Brian,

First, congrats on the wedding!  I wish the two of you great happiness.

My story is very similar to yours.  I had a skin lesion 2.5 years ago and was diagnosed with Stage IV on August 17th, a couple of days after you.  Thye cut mine out along with the sentinel node.  I thought about going to MD Anderson, but selected Moffitt because it's close by. 

I wan't eligible for the PD1 trial, so they are testing for Mage-3 trial.  I should find out next week if I'm in the trial.  Because I'm NED, I don't appear to have many other options other than alpha-interferon or simply waiting.  Thanks for the info on your treatments, I'll be checking for your future posts.

Wishing you and your wife all the best!

Frank

Janes site:

http://www2.mdanderson.org/MT/mt-search.cgi?search=Perseverance+Prevails+Against+Rare+Melanoma&IncludeBlogs=6&limit=20

My experiences are in myprofile on the MPIP site.

Janes site:

http://www2.mdanderson.org/MT/mt-search.cgi?search=Perseverance+Prevails+Against+Rare+Melanoma&IncludeBlogs=6&limit=20

My experiences are in myprofile on the MPIP site.

Janes site:

http://www2.mdanderson.org/MT/mt-search.cgi?search=Perseverance+Prevails+Against+Rare+Melanoma&IncludeBlogs=6&limit=20

My experiences are in myprofile on the MPIP site.

Hi Brent,

My thoughts and prayers are with you; Sorry I cannot offer any help with your current S/E. I am a Canadian stage 1B melanoma patient living in Switzerland. I was diagnosed with melanoma in May 2012 and had slnb and wle. In September I moved to Switzerland to join my husband who is working here. I find even amongst Drs there are huge discrepencies with their opinion on risk. I met a few pts with <1mm melanomas on face/neck/scalp which progressed to Stage 4 even though they were told "you caught it early". I can't understand why the neck for instance is a worse place – more vascular? I don't believe so. I agree that its frustrating when ppl sometimes assume that if you get it quick your guaranteed a cure – it only takes a few rogue cells to wreek havoc later on. Here in Switzerland they do body scanning, x rays, and full body ultrasounds (neck, groin, armpits) every few months for Stage 1B. It is really unscientific and unproven method of follow up based on what we all know about melanoma. Especially since for lesions under 1 mm there seems to be a greater risk of recurrence around 10 year mark vs. lesions greater than 1mm were the risk seems highest in first 5 (although the first two years are still pretty much acepted as the upper level of risk for reccurence). What are the Swiss thinking they will find? HAve they ever been able to diagnose recurrence based on these time-consuming Ultrasounds? I am doubtful. I will be part of a melanoma group here in Switzerlandand will meet next week – plenty of patients are currently on a variety of txs so if I can find anything out I will ask and let you know. Until than I will be thinking of you Brent and et al and wishing you well!

Hi Brent,

My thoughts and prayers are with you; Sorry I cannot offer any help with your current S/E. I am a Canadian stage 1B melanoma patient living in Switzerland. I was diagnosed with melanoma in May 2012 and had slnb and wle. In September I moved to Switzerland to join my husband who is working here. I find even amongst Drs there are huge discrepencies with their opinion on risk. I met a few pts with <1mm melanomas on face/neck/scalp which progressed to Stage 4 even though they were told "you caught it early". I can't understand why the neck for instance is a worse place – more vascular? I don't believe so. I agree that its frustrating when ppl sometimes assume that if you get it quick your guaranteed a cure – it only takes a few rogue cells to wreek havoc later on. Here in Switzerland they do body scanning, x rays, and full body ultrasounds (neck, groin, armpits) every few months for Stage 1B. It is really unscientific and unproven method of follow up based on what we all know about melanoma. Especially since for lesions under 1 mm there seems to be a greater risk of recurrence around 10 year mark vs. lesions greater than 1mm were the risk seems highest in first 5 (although the first two years are still pretty much acepted as the upper level of risk for reccurence). What are the Swiss thinking they will find? HAve they ever been able to diagnose recurrence based on these time-consuming Ultrasounds? I am doubtful. I will be part of a melanoma group here in Switzerlandand will meet next week – plenty of patients are currently on a variety of txs so if I can find anything out I will ask and let you know. Until than I will be thinking of you Brent and et al and wishing you well!

Hi Brent,

My thoughts and prayers are with you; Sorry I cannot offer any help with your current S/E. I am a Canadian stage 1B melanoma patient living in Switzerland. I was diagnosed with melanoma in May 2012 and had slnb and wle. In September I moved to Switzerland to join my husband who is working here. I find even amongst Drs there are huge discrepencies with their opinion on risk. I met a few pts with <1mm melanomas on face/neck/scalp which progressed to Stage 4 even though they were told "you caught it early". I can't understand why the neck for instance is a worse place – more vascular? I don't believe so. I agree that its frustrating when ppl sometimes assume that if you get it quick your guaranteed a cure – it only takes a few rogue cells to wreek havoc later on. Here in Switzerland they do body scanning, x rays, and full body ultrasounds (neck, groin, armpits) every few months for Stage 1B. It is really unscientific and unproven method of follow up based on what we all know about melanoma. Especially since for lesions under 1 mm there seems to be a greater risk of recurrence around 10 year mark vs. lesions greater than 1mm were the risk seems highest in first 5 (although the first two years are still pretty much acepted as the upper level of risk for reccurence). What are the Swiss thinking they will find? HAve they ever been able to diagnose recurrence based on these time-consuming Ultrasounds? I am doubtful. I will be part of a melanoma group here in Switzerlandand will meet next week – plenty of patients are currently on a variety of txs so if I can find anything out I will ask and let you know. Until than I will be thinking of you Brent and et al and wishing you well!

Sounds all too familiar.  Keep up the fight!

Sounds all too familiar.  Keep up the fight!

Sounds all too familiar.  Keep up the fight!