Newly diagnosed

Your thoughts and emotions are perfectly normal for a newly diagnosed individual.  Yes, things do get better with time.  You'll be surprised how much easier things will be in a year from now.  It does take time to get a "new normal" with regards to sun block, covering up and all the rest.  I don't let melanoma dictate my life.  I do everything I did prior to melanoma, I just try to do it a bit smarter.  If that means being a bit more covered up or sunscreen or just doing things at a different time of day, that's what I do. 

The likelihood of having any more issues with melanoma is extremely slim.  Melanoma in situ basically lacks any mechanism to spread as there are no blood/lymph vessels in the epidermis.  The likelihood of having another primary is also fairly remote.  Only about 8% of the melanoma population ever have more than one primary.  It can be hard emotionally to see cancer and equate it to almost a 100% survival rate – the two just don't seem to go together.  But that's the reality.  I suggest staying off sites like this.  While they can be informational and answer questions, they also expose you to people with much worse prognosis and it is easy to let the imagination run away.  If you want to send me an email (click on my name and go to my profile to send it), I can put you on a private email list with other stage 0 and 1 individuals.  That's a better audience and more realistic for you than reading about later stage individuals.

Best wishes,

Janner

Your thoughts and emotions are perfectly normal for a newly diagnosed individual.  Yes, things do get better with time.  You'll be surprised how much easier things will be in a year from now.  It does take time to get a "new normal" with regards to sun block, covering up and all the rest.  I don't let melanoma dictate my life.  I do everything I did prior to melanoma, I just try to do it a bit smarter.  If that means being a bit more covered up or sunscreen or just doing things at a different time of day, that's what I do. 

The likelihood of having any more issues with melanoma is extremely slim.  Melanoma in situ basically lacks any mechanism to spread as there are no blood/lymph vessels in the epidermis.  The likelihood of having another primary is also fairly remote.  Only about 8% of the melanoma population ever have more than one primary.  It can be hard emotionally to see cancer and equate it to almost a 100% survival rate – the two just don't seem to go together.  But that's the reality.  I suggest staying off sites like this.  While they can be informational and answer questions, they also expose you to people with much worse prognosis and it is easy to let the imagination run away.  If you want to send me an email (click on my name and go to my profile to send it), I can put you on a private email list with other stage 0 and 1 individuals.  That's a better audience and more realistic for you than reading about later stage individuals.

Best wishes,

Janner

Your thoughts and emotions are perfectly normal for a newly diagnosed individual.  Yes, things do get better with time.  You'll be surprised how much easier things will be in a year from now.  It does take time to get a "new normal" with regards to sun block, covering up and all the rest.  I don't let melanoma dictate my life.  I do everything I did prior to melanoma, I just try to do it a bit smarter.  If that means being a bit more covered up or sunscreen or just doing things at a different time of day, that's what I do. 

The likelihood of having any more issues with melanoma is extremely slim.  Melanoma in situ basically lacks any mechanism to spread as there are no blood/lymph vessels in the epidermis.  The likelihood of having another primary is also fairly remote.  Only about 8% of the melanoma population ever have more than one primary.  It can be hard emotionally to see cancer and equate it to almost a 100% survival rate – the two just don't seem to go together.  But that's the reality.  I suggest staying off sites like this.  While they can be informational and answer questions, they also expose you to people with much worse prognosis and it is easy to let the imagination run away.  If you want to send me an email (click on my name and go to my profile to send it), I can put you on a private email list with other stage 0 and 1 individuals.  That's a better audience and more realistic for you than reading about later stage individuals.

Best wishes,

Janner

I had melanoma in situ 40 years ago and have never had another primary site.  I haven't always been that careful in the sun as I live in Southern California and it is almost impossible to avoid some exposure but I do have my skin checked by a dermatologist fairly regularly.  

The reason I am responding to you is that my daughter, age 24, was diagnosed with melanoma last October.  Started as stage IIb (nodular type that was deep) and then was found in one lymph node so progressed to stage IIIb.  Make sure you protect your kids from getting any blistering sunburns and, without freaking them out about it, monitor their skin (and teach them how to as well) as there is a genetic tendency toward melanoma.  

I don't mean to alarm you but I wish someone had told me that before this happened.  I always used sunscreen with her and had 1 mole removed when she was younger because it looked "weird".  When this mole started to change I told her to get it checked but didn't make her do it right away.  It took her a couple of months to get around to it.  I know that short amount of time might not have made a difference but then again it might have.

Take care of yourself and your kids and enjoy your life.  If you don't then melanoma wins.

I had melanoma in situ 40 years ago and have never had another primary site.  I haven't always been that careful in the sun as I live in Southern California and it is almost impossible to avoid some exposure but I do have my skin checked by a dermatologist fairly regularly.  

The reason I am responding to you is that my daughter, age 24, was diagnosed with melanoma last October.  Started as stage IIb (nodular type that was deep) and then was found in one lymph node so progressed to stage IIIb.  Make sure you protect your kids from getting any blistering sunburns and, without freaking them out about it, monitor their skin (and teach them how to as well) as there is a genetic tendency toward melanoma.  

I don't mean to alarm you but I wish someone had told me that before this happened.  I always used sunscreen with her and had 1 mole removed when she was younger because it looked "weird".  When this mole started to change I told her to get it checked but didn't make her do it right away.  It took her a couple of months to get around to it.  I know that short amount of time might not have made a difference but then again it might have.

Take care of yourself and your kids and enjoy your life.  If you don't then melanoma wins.

I had melanoma in situ 40 years ago and have never had another primary site.  I haven't always been that careful in the sun as I live in Southern California and it is almost impossible to avoid some exposure but I do have my skin checked by a dermatologist fairly regularly.  

The reason I am responding to you is that my daughter, age 24, was diagnosed with melanoma last October.  Started as stage IIb (nodular type that was deep) and then was found in one lymph node so progressed to stage IIIb.  Make sure you protect your kids from getting any blistering sunburns and, without freaking them out about it, monitor their skin (and teach them how to as well) as there is a genetic tendency toward melanoma.  

I don't mean to alarm you but I wish someone had told me that before this happened.  I always used sunscreen with her and had 1 mole removed when she was younger because it looked "weird".  When this mole started to change I told her to get it checked but didn't make her do it right away.  It took her a couple of months to get around to it.  I know that short amount of time might not have made a difference but then again it might have.

Take care of yourself and your kids and enjoy your life.  If you don't then melanoma wins.

I was diagnosed Stage III on December 31 of last year.  After my surgeries I had a clear PET scan, but was referred to an Onc for drug therapy which I just completed this past Tuesday.  I am hopeful my PET scan in July will still be clear, but even then will not know if the melanoma is actually gone unless it gets a foothold someplace else in my system.  I think that's what makes it such a bad actor in the cancer family.

I know exactly what you mean about the whole uncertainty part of melanoma.  My plan to deal with this uncertainty is to be hyper-vigilant by seeing my dermatologist frequently and going in for PET scans frequently.  At worst, I will catch something early so it is treatable that way, at best I will rest easier knowing there is nothing to worry about.

I don't know what would help you feel more secure about your health going forward.  There are lots of us on this journey and talking to each other about it is a good first step.  You will find your way.

I use a sunscreen product by Aveeno which has the added benefit of hydrating my dry skin as well as protecting me.  It rubs in completely and is invisible.  I only use it if I'm going outside to work in the yard or go to a sporting event or something.

I was diagnosed Stage III on December 31 of last year.  After my surgeries I had a clear PET scan, but was referred to an Onc for drug therapy which I just completed this past Tuesday.  I am hopeful my PET scan in July will still be clear, but even then will not know if the melanoma is actually gone unless it gets a foothold someplace else in my system.  I think that's what makes it such a bad actor in the cancer family.

I know exactly what you mean about the whole uncertainty part of melanoma.  My plan to deal with this uncertainty is to be hyper-vigilant by seeing my dermatologist frequently and going in for PET scans frequently.  At worst, I will catch something early so it is treatable that way, at best I will rest easier knowing there is nothing to worry about.

I don't know what would help you feel more secure about your health going forward.  There are lots of us on this journey and talking to each other about it is a good first step.  You will find your way.

I use a sunscreen product by Aveeno which has the added benefit of hydrating my dry skin as well as protecting me.  It rubs in completely and is invisible.  I only use it if I'm going outside to work in the yard or go to a sporting event or something.

I was diagnosed Stage III on December 31 of last year.  After my surgeries I had a clear PET scan, but was referred to an Onc for drug therapy which I just completed this past Tuesday.  I am hopeful my PET scan in July will still be clear, but even then will not know if the melanoma is actually gone unless it gets a foothold someplace else in my system.  I think that's what makes it such a bad actor in the cancer family.

I know exactly what you mean about the whole uncertainty part of melanoma.  My plan to deal with this uncertainty is to be hyper-vigilant by seeing my dermatologist frequently and going in for PET scans frequently.  At worst, I will catch something early so it is treatable that way, at best I will rest easier knowing there is nothing to worry about.

I don't know what would help you feel more secure about your health going forward.  There are lots of us on this journey and talking to each other about it is a good first step.  You will find your way.

I use a sunscreen product by Aveeno which has the added benefit of hydrating my dry skin as well as protecting me.  It rubs in completely and is invisible.  I only use it if I'm going outside to work in the yard or go to a sporting event or something.

I understand what you are going through.  I was 28 years old with two small children when I was diagnosed with MM.

I wish I could tell you all the things that happend to  me then.  I remember a biopsy then more radical surgery on my wrist.  I was suppose to go to another doctor.  Back then my life time was suppose to be 5 years with treatment.

I was in denial.  I prayed to God, asked him to help me.  I wanted a deal to be able to live my life raising my two children until they were out of the house.  After that if the disease came back, then it came back.

In 2004 I went to my Dermatologist and he said with blood work and scan, I was cured.  I was so far out from my initial

(I cant think of the word, I had a stroke, sometimes it is hard on my words).  Any way he proclaimed me cured! 

In 2005 my daughter was on her way to college and out the door from my house  I was pretty healthy and I was working long hard hours in my own business. 

Then in October, I thought I had the flu.  I went into the doctor because a small pea size lump was under my armpit.  They thought it was because I had a lung infection and gave me antibiotics.  Sometime that fall I had a Mamogram and they noticed a susupicious spot.  I think it was December I went to radiology for an ultrasound.  The radiologist said he felt the tumor was cancer and sent me to a oncology surgeon.  He wanted to get it done right away, but my brother was graudating from Law school and I wanted to attend.  So I told the surgeon, we have gone this far, lets wait until after Christmas.  So sometime after Christmas I had a biopsy.  The doctor said it was lymphoma, but called me several days later and said Melanoma, tumor golf ball sized, stage IIIB.  I went back for more surgery in the new year 2006 to have lots of lymph nodes removed.  Then 8 weeks later high dose Interferon.  This was done in my  home.  I passed out from it and woke up 5 days later in the hospital I guess to flush out the interferon.  I was told I could not tolerate the immune drugs.  So they asked if I wanted to try radiology.  No.  No.  No.  I said I wanted time to think.  So I talked to a homeopathic person and she suggested a mild detox , organic diet, no caffiene, no alcohol, no processed foods.  This actually made me feel wonderful. 

To Sum up everything.  I had brain surgery in 2007 and a clot from the surgery.

2008, I had painful lesions on my arms back and legs, bone pain, insomnia.

2009 Pet scan showed a tumor in my upper colon.  2 weeks later upper colonoscopy showed no tumor.

2010 severe swelling of my left arm, severe disease of my digestive tract , fluid around my lungs and heart (this is where I thought I would die)  But I didn't.  In fact the scans showed no lesions or tumors so after the lung and heart thing I was NED.

2012  Winter, I had a stroke.  Summer I had a heart attack from a clot. 

Today, I'm disabled, alone and I'm still here.

Oh…about the people who want to get toasted out there in the sun.  Don't worry about them.  Even if you told them the problem with what they are doing they would think you are weird.  I did this.  I even did an article in the paper.  People just don't think it will happen to them. 

I use Aveeno SPF 70 on my face and 50 everywhere else. I wear shear clothing over my regular clothing an a hat when I go out in the summer.  Winter in Vermont you are covered from head to toe.

Good Luck to You!   Try to live your life without  melanoma living  your life.   I had a great time raising my children.

Also, I know nothing about any of the new therapies or vaccine drugs.  After my NED, I haven't been back to the Oncologist.  I'm 56 years old and I'm just going to live my life and if it comes back strong, its time to meet my maker.

Cindy VT

I understand what you are going through.  I was 28 years old with two small children when I was diagnosed with MM.

I wish I could tell you all the things that happend to  me then.  I remember a biopsy then more radical surgery on my wrist.  I was suppose to go to another doctor.  Back then my life time was suppose to be 5 years with treatment.

I was in denial.  I prayed to God, asked him to help me.  I wanted a deal to be able to live my life raising my two children until they were out of the house.  After that if the disease came back, then it came back.

In 2004 I went to my Dermatologist and he said with blood work and scan, I was cured.  I was so far out from my initial

(I cant think of the word, I had a stroke, sometimes it is hard on my words).  Any way he proclaimed me cured! 

In 2005 my daughter was on her way to college and out the door from my house  I was pretty healthy and I was working long hard hours in my own business. 

Then in October, I thought I had the flu.  I went into the doctor because a small pea size lump was under my armpit.  They thought it was because I had a lung infection and gave me antibiotics.  Sometime that fall I had a Mamogram and they noticed a susupicious spot.  I think it was December I went to radiology for an ultrasound.  The radiologist said he felt the tumor was cancer and sent me to a oncology surgeon.  He wanted to get it done right away, but my brother was graudating from Law school and I wanted to attend.  So I told the surgeon, we have gone this far, lets wait until after Christmas.  So sometime after Christmas I had a biopsy.  The doctor said it was lymphoma, but called me several days later and said Melanoma, tumor golf ball sized, stage IIIB.  I went back for more surgery in the new year 2006 to have lots of lymph nodes removed.  Then 8 weeks later high dose Interferon.  This was done in my  home.  I passed out from it and woke up 5 days later in the hospital I guess to flush out the interferon.  I was told I could not tolerate the immune drugs.  So they asked if I wanted to try radiology.  No.  No.  No.  I said I wanted time to think.  So I talked to a homeopathic person and she suggested a mild detox , organic diet, no caffiene, no alcohol, no processed foods.  This actually made me feel wonderful. 

To Sum up everything.  I had brain surgery in 2007 and a clot from the surgery.

2008, I had painful lesions on my arms back and legs, bone pain, insomnia.

2009 Pet scan showed a tumor in my upper colon.  2 weeks later upper colonoscopy showed no tumor.

2010 severe swelling of my left arm, severe disease of my digestive tract , fluid around my lungs and heart (this is where I thought I would die)  But I didn't.  In fact the scans showed no lesions or tumors so after the lung and heart thing I was NED.

2012  Winter, I had a stroke.  Summer I had a heart attack from a clot. 

Today, I'm disabled, alone and I'm still here.

Oh…about the people who want to get toasted out there in the sun.  Don't worry about them.  Even if you told them the problem with what they are doing they would think you are weird.  I did this.  I even did an article in the paper.  People just don't think it will happen to them. 

I use Aveeno SPF 70 on my face and 50 everywhere else. I wear shear clothing over my regular clothing an a hat when I go out in the summer.  Winter in Vermont you are covered from head to toe.

Good Luck to You!   Try to live your life without  melanoma living  your life.   I had a great time raising my children.

Also, I know nothing about any of the new therapies or vaccine drugs.  After my NED, I haven't been back to the Oncologist.  I'm 56 years old and I'm just going to live my life and if it comes back strong, its time to meet my maker.

Cindy VT

I understand what you are going through.  I was 28 years old with two small children when I was diagnosed with MM.

I wish I could tell you all the things that happend to  me then.  I remember a biopsy then more radical surgery on my wrist.  I was suppose to go to another doctor.  Back then my life time was suppose to be 5 years with treatment.

I was in denial.  I prayed to God, asked him to help me.  I wanted a deal to be able to live my life raising my two children until they were out of the house.  After that if the disease came back, then it came back.

In 2004 I went to my Dermatologist and he said with blood work and scan, I was cured.  I was so far out from my initial

(I cant think of the word, I had a stroke, sometimes it is hard on my words).  Any way he proclaimed me cured! 

In 2005 my daughter was on her way to college and out the door from my house  I was pretty healthy and I was working long hard hours in my own business. 

Then in October, I thought I had the flu.  I went into the doctor because a small pea size lump was under my armpit.  They thought it was because I had a lung infection and gave me antibiotics.  Sometime that fall I had a Mamogram and they noticed a susupicious spot.  I think it was December I went to radiology for an ultrasound.  The radiologist said he felt the tumor was cancer and sent me to a oncology surgeon.  He wanted to get it done right away, but my brother was graudating from Law school and I wanted to attend.  So I told the surgeon, we have gone this far, lets wait until after Christmas.  So sometime after Christmas I had a biopsy.  The doctor said it was lymphoma, but called me several days later and said Melanoma, tumor golf ball sized, stage IIIB.  I went back for more surgery in the new year 2006 to have lots of lymph nodes removed.  Then 8 weeks later high dose Interferon.  This was done in my  home.  I passed out from it and woke up 5 days later in the hospital I guess to flush out the interferon.  I was told I could not tolerate the immune drugs.  So they asked if I wanted to try radiology.  No.  No.  No.  I said I wanted time to think.  So I talked to a homeopathic person and she suggested a mild detox , organic diet, no caffiene, no alcohol, no processed foods.  This actually made me feel wonderful. 

To Sum up everything.  I had brain surgery in 2007 and a clot from the surgery.

2008, I had painful lesions on my arms back and legs, bone pain, insomnia.

2009 Pet scan showed a tumor in my upper colon.  2 weeks later upper colonoscopy showed no tumor.

2010 severe swelling of my left arm, severe disease of my digestive tract , fluid around my lungs and heart (this is where I thought I would die)  But I didn't.  In fact the scans showed no lesions or tumors so after the lung and heart thing I was NED.

2012  Winter, I had a stroke.  Summer I had a heart attack from a clot. 

Today, I'm disabled, alone and I'm still here.

Oh…about the people who want to get toasted out there in the sun.  Don't worry about them.  Even if you told them the problem with what they are doing they would think you are weird.  I did this.  I even did an article in the paper.  People just don't think it will happen to them. 

I use Aveeno SPF 70 on my face and 50 everywhere else. I wear shear clothing over my regular clothing an a hat when I go out in the summer.  Winter in Vermont you are covered from head to toe.

Good Luck to You!   Try to live your life without  melanoma living  your life.   I had a great time raising my children.

Also, I know nothing about any of the new therapies or vaccine drugs.  After my NED, I haven't been back to the Oncologist.  I'm 56 years old and I'm just going to live my life and if it comes back strong, its time to meet my maker.

Cindy VT