Newly diagnosed stage 4 and so scared!!

So sorry you had to join this group but you are in the right place for information and support.  So glad you filled out your profile and to learn you are seeing a melanoma specialist, Dr. Luke at the University of Chicago.  

I think you may be confusing Breslow depth 4 with Stage IV.  When you first learn about your diagnosis everything is new, you're anxious, and trying to assimilate so much while you are panic-stricken.  Did you have someone else with you at the appointment?  Breslow depth is a somewhat outdated way of talking about the depth of your tumor.   Stage IV (vs Breslow depth) means that the cancer has spread to other organs – it doesn't sound like that's the case.  You have lots of good test results with the CT scan and I assume your dr. will do additional tests.  

When will you be seeing your dr. again?  Can you take someone with you?  Ask your dr. if you can record the meeting.   

There are lots of stage IV people on the board and lots of peeps more knowledgeable than I am – apparently I'm the only one hanging out on my computer on Saturday night.  Weekends do tend to be a little slow but others will respond. If you don't get lots of replies by Monday or Tuesday repost your questions. 

Even though my diagnosis was over 10 years ago, I clearly remember the sleepless nights and terrible fear.  It will get better.  Don't expect too much from your family – they're terrified too and dealing with it the best they can.

Fen

So sorry you had to join this group but you are in the right place for information and support.  So glad you filled out your profile and to learn you are seeing a melanoma specialist, Dr. Luke at the University of Chicago.  

I think you may be confusing Breslow depth 4 with Stage IV.  When you first learn about your diagnosis everything is new, you're anxious, and trying to assimilate so much while you are panic-stricken.  Did you have someone else with you at the appointment?  Breslow depth is a somewhat outdated way of talking about the depth of your tumor.   Stage IV (vs Breslow depth) means that the cancer has spread to other organs – it doesn't sound like that's the case.  You have lots of good test results with the CT scan and I assume your dr. will do additional tests.  

When will you be seeing your dr. again?  Can you take someone with you?  Ask your dr. if you can record the meeting.   

There are lots of stage IV people on the board and lots of peeps more knowledgeable than I am – apparently I'm the only one hanging out on my computer on Saturday night.  Weekends do tend to be a little slow but others will respond. If you don't get lots of replies by Monday or Tuesday repost your questions. 

Even though my diagnosis was over 10 years ago, I clearly remember the sleepless nights and terrible fear.  It will get better.  Don't expect too much from your family – they're terrified too and dealing with it the best they can.

Fen

So sorry you had to join this group but you are in the right place for information and support.  So glad you filled out your profile and to learn you are seeing a melanoma specialist, Dr. Luke at the University of Chicago.  

I think you may be confusing Breslow depth 4 with Stage IV.  When you first learn about your diagnosis everything is new, you're anxious, and trying to assimilate so much while you are panic-stricken.  Did you have someone else with you at the appointment?  Breslow depth is a somewhat outdated way of talking about the depth of your tumor.   Stage IV (vs Breslow depth) means that the cancer has spread to other organs – it doesn't sound like that's the case.  You have lots of good test results with the CT scan and I assume your dr. will do additional tests.  

When will you be seeing your dr. again?  Can you take someone with you?  Ask your dr. if you can record the meeting.   

There are lots of stage IV people on the board and lots of peeps more knowledgeable than I am – apparently I'm the only one hanging out on my computer on Saturday night.  Weekends do tend to be a little slow but others will respond. If you don't get lots of replies by Monday or Tuesday repost your questions. 

Even though my diagnosis was over 10 years ago, I clearly remember the sleepless nights and terrible fear.  It will get better.  Don't expect too much from your family – they're terrified too and dealing with it the best they can.

Fen

Hi,

Sorry you are having to deal with all of this.

Have a read at this http://www.cancerresearchuk.org/about-cancer/type/melanoma/treatment/stages-of-melanoma#systems

It explains clark and breslow scales and the staging system for melanoma.

The information you give regarding detectable spread is at odds with the suggested stage. 

Have you had vit d levels tested and is it in normal range ? A supplement might be useful. 

Not saying that your diagnosis is not scary.. …but hang in there- and ask questions .

Think you are doing the right thing using treatment now to reduce the risk of spread..

Best wishes

Deb

Hi,

Sorry you are having to deal with all of this.

Have a read at this http://www.cancerresearchuk.org/about-cancer/type/melanoma/treatment/stages-of-melanoma#systems

It explains clark and breslow scales and the staging system for melanoma.

The information you give regarding detectable spread is at odds with the suggested stage. 

Have you had vit d levels tested and is it in normal range ? A supplement might be useful. 

Not saying that your diagnosis is not scary.. …but hang in there- and ask questions .

Think you are doing the right thing using treatment now to reduce the risk of spread..

Best wishes

Deb

Hi,

Sorry you are having to deal with all of this.

Have a read at this http://www.cancerresearchuk.org/about-cancer/type/melanoma/treatment/stages-of-melanoma#systems

It explains clark and breslow scales and the staging system for melanoma.

The information you give regarding detectable spread is at odds with the suggested stage. 

Have you had vit d levels tested and is it in normal range ? A supplement might be useful. 

Not saying that your diagnosis is not scary.. …but hang in there- and ask questions .

Think you are doing the right thing using treatment now to reduce the risk of spread..

Best wishes

Deb

My impression is you are young and healthy so you have an excellent chance in beating this.
Tom

My impression is you are young and healthy so you have an excellent chance in beating this.
Tom

My impression is you are young and healthy so you have an excellent chance in beating this.
Tom

I am so sorry you've joined the club. But, a lot of good advancements in treatment have happened in the past few years, so getting melanoma now is way different and has a much brighter outlook than it ever did.

People seem to be confused by your staging, and I understand, it can seem confusing. Sounds like you have an unknown primary and the spread occured in the soft tissue creating a subcutanous tumor. I am not sure how common this is, I know others on here have had sub q's but I don't think they were the first sign of mel for them. You had it removed and your scans are clear, which means you are NED (no evidence of disease) right now and you're put on Ipi for the adjuvant setting. Most think of the adjuvant Ipi for only stage 3 folks, but if someone at stage 4 has a tumor removed and they have no other sign of mel then they can also get the adjuvant treatment setting.

You're seeing one of the top melanoma specialists in the country so you've already gotten ahead of the game in that department.

Now, you can focus on getting through the Ipi treatments, hopefully with few side effects, and there could be a good chance this is all you'll have to deal with in the melanoma world. If not, don't worry, there's other immunotherapy treatment options for those with active cancer/unresectable disease that have high effectiveness rates and other stage 4 peeps on here can attest to them as they are living life years after their diagnosis, and some even NED!

Hang in there, you've come the right place for support and guidance, you're definitely not alone.

I am so sorry you've joined the club. But, a lot of good advancements in treatment have happened in the past few years, so getting melanoma now is way different and has a much brighter outlook than it ever did.

People seem to be confused by your staging, and I understand, it can seem confusing. Sounds like you have an unknown primary and the spread occured in the soft tissue creating a subcutanous tumor. I am not sure how common this is, I know others on here have had sub q's but I don't think they were the first sign of mel for them. You had it removed and your scans are clear, which means you are NED (no evidence of disease) right now and you're put on Ipi for the adjuvant setting. Most think of the adjuvant Ipi for only stage 3 folks, but if someone at stage 4 has a tumor removed and they have no other sign of mel then they can also get the adjuvant treatment setting.

You're seeing one of the top melanoma specialists in the country so you've already gotten ahead of the game in that department.

Now, you can focus on getting through the Ipi treatments, hopefully with few side effects, and there could be a good chance this is all you'll have to deal with in the melanoma world. If not, don't worry, there's other immunotherapy treatment options for those with active cancer/unresectable disease that have high effectiveness rates and other stage 4 peeps on here can attest to them as they are living life years after their diagnosis, and some even NED!

Hang in there, you've come the right place for support and guidance, you're definitely not alone.

I am so sorry you've joined the club. But, a lot of good advancements in treatment have happened in the past few years, so getting melanoma now is way different and has a much brighter outlook than it ever did.

People seem to be confused by your staging, and I understand, it can seem confusing. Sounds like you have an unknown primary and the spread occured in the soft tissue creating a subcutanous tumor. I am not sure how common this is, I know others on here have had sub q's but I don't think they were the first sign of mel for them. You had it removed and your scans are clear, which means you are NED (no evidence of disease) right now and you're put on Ipi for the adjuvant setting. Most think of the adjuvant Ipi for only stage 3 folks, but if someone at stage 4 has a tumor removed and they have no other sign of mel then they can also get the adjuvant treatment setting.

You're seeing one of the top melanoma specialists in the country so you've already gotten ahead of the game in that department.

Now, you can focus on getting through the Ipi treatments, hopefully with few side effects, and there could be a good chance this is all you'll have to deal with in the melanoma world. If not, don't worry, there's other immunotherapy treatment options for those with active cancer/unresectable disease that have high effectiveness rates and other stage 4 peeps on here can attest to them as they are living life years after their diagnosis, and some even NED!

Hang in there, you've come the right place for support and guidance, you're definitely not alone.

Hi Amy,

I was just about to post a long story about how it has been with my daughter who was 13 when I was diagnosed.  I decided not to post, but do want to say that the essence of my story was that our kids are stronger and more resiliant than we may think.  Mine has dealt with the situation in a unique way, that works for her.  But that if you stay positive, try to be as normal as possible on a day to day basis, you can negate much of the anxiety, overt and hidden, that our children are going through.  She will be OK.

Gary

Hi Amy,

I was just about to post a long story about how it has been with my daughter who was 13 when I was diagnosed.  I decided not to post, but do want to say that the essence of my story was that our kids are stronger and more resiliant than we may think.  Mine has dealt with the situation in a unique way, that works for her.  But that if you stay positive, try to be as normal as possible on a day to day basis, you can negate much of the anxiety, overt and hidden, that our children are going through.  She will be OK.

Gary

Hi Amy,

I was just about to post a long story about how it has been with my daughter who was 13 when I was diagnosed.  I decided not to post, but do want to say that the essence of my story was that our kids are stronger and more resiliant than we may think.  Mine has dealt with the situation in a unique way, that works for her.  But that if you stay positive, try to be as normal as possible on a day to day basis, you can negate much of the anxiety, overt and hidden, that our children are going through.  She will be OK.

Gary

Hello,

I am sorry you have to join the melanoma group but there is a lot of knowledge here.

A little history first, I am not the patient my husband is.  He started with a 10.5 mm melanoma on the back of his head removed and he started out as a Stage IIIb. This was Jan. 2008 and they didn't have adjuvant for Stage III and he didn't want to take Chemo.   After 4 more surgeries he became Stage IV because he had an unresectable tumor on the Cervical Spine and it had spread to his liver and lungs along with 4 sub q's where the unresesctable tumor was.  He went on a clinical trial for Ipi (10 mg/kg) and GM-CSF (which was self injected for 14 days and then a 7 day rest).  He started in March 2011 just before Ipi (Yervoy) became and approved drug for melanoma.  We took pictures every 3 weeks and watched the sub q's disappear.  His trial had the maintenance doses of the Ipi included and by July 2012 he was NED.  He remained on it until Dec. 2013.  So he has been NED for over 4 years.  If you would like to read more check out his profile.

Good luck with your treatments.

I would also like to suggest that you get copies of your scans, tests and pathology reports and make you own file to keep.

Judy (loving wife of Gene Stage IV and now NED)

Hello,

I am sorry you have to join the melanoma group but there is a lot of knowledge here.

A little history first, I am not the patient my husband is.  He started with a 10.5 mm melanoma on the back of his head removed and he started out as a Stage IIIb. This was Jan. 2008 and they didn't have adjuvant for Stage III and he didn't want to take Chemo.   After 4 more surgeries he became Stage IV because he had an unresectable tumor on the Cervical Spine and it had spread to his liver and lungs along with 4 sub q's where the unresesctable tumor was.  He went on a clinical trial for Ipi (10 mg/kg) and GM-CSF (which was self injected for 14 days and then a 7 day rest).  He started in March 2011 just before Ipi (Yervoy) became and approved drug for melanoma.  We took pictures every 3 weeks and watched the sub q's disappear.  His trial had the maintenance doses of the Ipi included and by July 2012 he was NED.  He remained on it until Dec. 2013.  So he has been NED for over 4 years.  If you would like to read more check out his profile.

Good luck with your treatments.

I would also like to suggest that you get copies of your scans, tests and pathology reports and make you own file to keep.

Judy (loving wife of Gene Stage IV and now NED)

Hello,

I am sorry you have to join the melanoma group but there is a lot of knowledge here.

A little history first, I am not the patient my husband is.  He started with a 10.5 mm melanoma on the back of his head removed and he started out as a Stage IIIb. This was Jan. 2008 and they didn't have adjuvant for Stage III and he didn't want to take Chemo.   After 4 more surgeries he became Stage IV because he had an unresectable tumor on the Cervical Spine and it had spread to his liver and lungs along with 4 sub q's where the unresesctable tumor was.  He went on a clinical trial for Ipi (10 mg/kg) and GM-CSF (which was self injected for 14 days and then a 7 day rest).  He started in March 2011 just before Ipi (Yervoy) became and approved drug for melanoma.  We took pictures every 3 weeks and watched the sub q's disappear.  His trial had the maintenance doses of the Ipi included and by July 2012 he was NED.  He remained on it until Dec. 2013.  So he has been NED for over 4 years.  If you would like to read more check out his profile.

Good luck with your treatments.

I would also like to suggest that you get copies of your scans, tests and pathology reports and make you own file to keep.

Judy (loving wife of Gene Stage IV and now NED)

My husband is stage IV too with a similar situation.  Unknown primary and spread.  Staged him at 4 with no lymph involvement like yours.  It only happens in only 3% of cases.  Stay strong, its frustrating.  Its an unusal stage iv and hard to find people in the same boat. 

My husband is stage IV too with a similar situation.  Unknown primary and spread.  Staged him at 4 with no lymph involvement like yours.  It only happens in only 3% of cases.  Stay strong, its frustrating.  Its an unusal stage iv and hard to find people in the same boat. 

My husband is stage IV too with a similar situation.  Unknown primary and spread.  Staged him at 4 with no lymph involvement like yours.  It only happens in only 3% of cases.  Stay strong, its frustrating.  Its an unusal stage iv and hard to find people in the same boat.