new here, let me introduce myself

Hi, Lizzy!

You are definitely in the right place to get loads of encouragement and suggestions from very knowledgeable folks. I am a fairly new Stage IV person, and I was very overwhelmed when I first started posting on this board. The more I posted, the more information was provided back to me, and the less overwhelmed and stronger I felt, and still feel.

As weird as it sounds, this is a good time to have melanoma (I don't mean to offend anyone). There are new treatments and more on the horizon.

Welcome to the board and the MPIP family!  As far as the teen tantrums go, I have an almost 18-year-old daughter who is emerging after several years of a very rough divorce and almost homelessness, and then two brain surgeries and cancer. Put that all together with raging hormones and it was not a pretty picture. But it will get better. Implore your child to step up to the plate as added stress can make your illness a whole lot worse. Do whatever it takes to have a little peace in your life!

Cristy, Stage IV

Hi, Lizzy!

You are definitely in the right place to get loads of encouragement and suggestions from very knowledgeable folks. I am a fairly new Stage IV person, and I was very overwhelmed when I first started posting on this board. The more I posted, the more information was provided back to me, and the less overwhelmed and stronger I felt, and still feel.

As weird as it sounds, this is a good time to have melanoma (I don't mean to offend anyone). There are new treatments and more on the horizon.

Welcome to the board and the MPIP family!  As far as the teen tantrums go, I have an almost 18-year-old daughter who is emerging after several years of a very rough divorce and almost homelessness, and then two brain surgeries and cancer. Put that all together with raging hormones and it was not a pretty picture. But it will get better. Implore your child to step up to the plate as added stress can make your illness a whole lot worse. Do whatever it takes to have a little peace in your life!

Cristy, Stage IV

Hi, Lizzy!

You are definitely in the right place to get loads of encouragement and suggestions from very knowledgeable folks. I am a fairly new Stage IV person, and I was very overwhelmed when I first started posting on this board. The more I posted, the more information was provided back to me, and the less overwhelmed and stronger I felt, and still feel.

As weird as it sounds, this is a good time to have melanoma (I don't mean to offend anyone). There are new treatments and more on the horizon.

Welcome to the board and the MPIP family!  As far as the teen tantrums go, I have an almost 18-year-old daughter who is emerging after several years of a very rough divorce and almost homelessness, and then two brain surgeries and cancer. Put that all together with raging hormones and it was not a pretty picture. But it will get better. Implore your child to step up to the plate as added stress can make your illness a whole lot worse. Do whatever it takes to have a little peace in your life!

Cristy, Stage IV

sorry you have had to join us! there are lots of people with information here… i am also kinda new so i am not very informative… but i am supportive.  i just recently found out there was micrometastasis to my nodes as well.  i have 2 kids so i completely understand tantrumming children & wish you luck with that!  remember kids can pick up on our emotions more than we give them credit for…  and at 13months they don't necessarily have the vocab for much other than tantrums.  hang in there tho, it does get better!!! and i am sure someone with information will chime in soon!

-desiree

sorry you have had to join us! there are lots of people with information here… i am also kinda new so i am not very informative… but i am supportive.  i just recently found out there was micrometastasis to my nodes as well.  i have 2 kids so i completely understand tantrumming children & wish you luck with that!  remember kids can pick up on our emotions more than we give them credit for…  and at 13months they don't necessarily have the vocab for much other than tantrums.  hang in there tho, it does get better!!! and i am sure someone with information will chime in soon!

-desiree

sorry you have had to join us! there are lots of people with information here… i am also kinda new so i am not very informative… but i am supportive.  i just recently found out there was micrometastasis to my nodes as well.  i have 2 kids so i completely understand tantrumming children & wish you luck with that!  remember kids can pick up on our emotions more than we give them credit for…  and at 13months they don't necessarily have the vocab for much other than tantrums.  hang in there tho, it does get better!!! and i am sure someone with information will chime in soon!

-desiree

Hi Lizzy!

I just want to offer you some big (((hugs))) as you begin your journey.  My best advice is to stay super vigilant no matter what.  I wish I had taken the diagnosis more seriously in my early days but I chose to believe the Drs. when they said they got it all.  This group is a great supportive bunch let me tell ya! 

Karin

Hi Lizzy!

I just want to offer you some big (((hugs))) as you begin your journey.  My best advice is to stay super vigilant no matter what.  I wish I had taken the diagnosis more seriously in my early days but I chose to believe the Drs. when they said they got it all.  This group is a great supportive bunch let me tell ya! 

Karin

Hi Lizzy!

I just want to offer you some big (((hugs))) as you begin your journey.  My best advice is to stay super vigilant no matter what.  I wish I had taken the diagnosis more seriously in my early days but I chose to believe the Drs. when they said they got it all.  This group is a great supportive bunch let me tell ya! 

Karin

Oh, shoot, Lizzy. I saw 13 year old, not 13 months old!  No hormones yet, and definitely no reasoning abilities…You still need some peace, so I would ask my family and very close friends to help out as much as you feel comfortable!

Cristy, Stage IV

Oh, shoot, Lizzy. I saw 13 year old, not 13 months old!  No hormones yet, and definitely no reasoning abilities…You still need some peace, so I would ask my family and very close friends to help out as much as you feel comfortable!

Cristy, Stage IV

Oh, shoot, Lizzy. I saw 13 year old, not 13 months old!  No hormones yet, and definitely no reasoning abilities…You still need some peace, so I would ask my family and very close friends to help out as much as you feel comfortable!

Cristy, Stage IV

Sorry you had to join us here.  You mention Zelboraf and Yervoy as two new drugs to try.  You won't be able to try Zelboraf.  That is for stage IV and is not an adjuvant therapy.  Tissue samples from tumors are used to determine if you have the correct BRAF defect.  After you have the lymph nodes removed, you will be NED (no evidence of disease).  So this means you need to look at adjuvant therapies or treatments designed to keep you NED.  Zelboraf is for people who have measurable disease that can't be removed via surgery.  Yervoy is also approved for the same thing.  There are currently trials out there comparing Yervoy to Interferon (long time standard for stage III) but if you are interested in Yervoy, it might be better to find a doc who would prescribe it for you.  Since it has no clinical data to show if it works as an adjuvant therapy, you'd essentially be doing your own "trial".  Doctors might not prescribe it for stage IIIA and you'd also need to make sure your insurance would cover it at your stage.  It's a very expensive drug.  You must also keep in mind that if you do Yervoy on a clinical trial basis now, it may impact your ability to take it later if you had measurable disease.  (This is something to discuss with a specialist). 

Ask lots of questions and do your research.

Best wishes,

Janner

Sorry you had to join us here.  You mention Zelboraf and Yervoy as two new drugs to try.  You won't be able to try Zelboraf.  That is for stage IV and is not an adjuvant therapy.  Tissue samples from tumors are used to determine if you have the correct BRAF defect.  After you have the lymph nodes removed, you will be NED (no evidence of disease).  So this means you need to look at adjuvant therapies or treatments designed to keep you NED.  Zelboraf is for people who have measurable disease that can't be removed via surgery.  Yervoy is also approved for the same thing.  There are currently trials out there comparing Yervoy to Interferon (long time standard for stage III) but if you are interested in Yervoy, it might be better to find a doc who would prescribe it for you.  Since it has no clinical data to show if it works as an adjuvant therapy, you'd essentially be doing your own "trial".  Doctors might not prescribe it for stage IIIA and you'd also need to make sure your insurance would cover it at your stage.  It's a very expensive drug.  You must also keep in mind that if you do Yervoy on a clinical trial basis now, it may impact your ability to take it later if you had measurable disease.  (This is something to discuss with a specialist). 

Ask lots of questions and do your research.

Best wishes,

Janner

Sorry you had to join us here.  You mention Zelboraf and Yervoy as two new drugs to try.  You won't be able to try Zelboraf.  That is for stage IV and is not an adjuvant therapy.  Tissue samples from tumors are used to determine if you have the correct BRAF defect.  After you have the lymph nodes removed, you will be NED (no evidence of disease).  So this means you need to look at adjuvant therapies or treatments designed to keep you NED.  Zelboraf is for people who have measurable disease that can't be removed via surgery.  Yervoy is also approved for the same thing.  There are currently trials out there comparing Yervoy to Interferon (long time standard for stage III) but if you are interested in Yervoy, it might be better to find a doc who would prescribe it for you.  Since it has no clinical data to show if it works as an adjuvant therapy, you'd essentially be doing your own "trial".  Doctors might not prescribe it for stage IIIA and you'd also need to make sure your insurance would cover it at your stage.  It's a very expensive drug.  You must also keep in mind that if you do Yervoy on a clinical trial basis now, it may impact your ability to take it later if you had measurable disease.  (This is something to discuss with a specialist). 

Ask lots of questions and do your research.

Best wishes,

Janner

Lizzy,

Welcome to the kindest, most supportive board out here! Sorry you had to join us…

Get a notebook, preferably with pockets. Jot down ALL questions, concerns, fears as they occur. This will help you when you are in doctor's offices. Ask questions until YOU are clear on the next step, when that occurs, why they want you to do it, etc.

If possible, take a supportive friend/family member. The second set of ears is so helpful, even with the notebook to refer back to.

Avoid "toxic" people. My mother-in-law is toxic "Oh my God, your kids won't have a mom". NOT what I plan, need to hear, or expect to happen. So, firm boundaries for the naysayers/gloom and doom types.

Make sure you are seeing a melanoma specialist. Travel if necessary for second opinions. Do not research/hang around the internet, it will drive you nuts and scare you to death. Ensure YOU have a good rapport/relationship with your doctor(s). It's your life, and if you just don't click, switch.

Hug your baby (in between tantrums). It's a stage. My oldest son had a semi permanent bump on his forehead from age 1-2, from throwing himself down and hitting his forehead on the floor! He's hardheaded (like me!). Enjoy your family, and the simple things. I have two sons in college, and two VERY hormanal daughters in high school. Half the time I want to kill them, but that just means we are chugging along normally for teens, and not focused on my cancer. You're a teacher, you're used to this.

It will get better, as you understand what needs to be done.

Prayers for you and your family.

TracyLee Stage IV  (ipi AND BRAF – been there, done that)

Lizzy,

Welcome to the kindest, most supportive board out here! Sorry you had to join us…

Get a notebook, preferably with pockets. Jot down ALL questions, concerns, fears as they occur. This will help you when you are in doctor's offices. Ask questions until YOU are clear on the next step, when that occurs, why they want you to do it, etc.

If possible, take a supportive friend/family member. The second set of ears is so helpful, even with the notebook to refer back to.

Avoid "toxic" people. My mother-in-law is toxic "Oh my God, your kids won't have a mom". NOT what I plan, need to hear, or expect to happen. So, firm boundaries for the naysayers/gloom and doom types.

Make sure you are seeing a melanoma specialist. Travel if necessary for second opinions. Do not research/hang around the internet, it will drive you nuts and scare you to death. Ensure YOU have a good rapport/relationship with your doctor(s). It's your life, and if you just don't click, switch.

Hug your baby (in between tantrums). It's a stage. My oldest son had a semi permanent bump on his forehead from age 1-2, from throwing himself down and hitting his forehead on the floor! He's hardheaded (like me!). Enjoy your family, and the simple things. I have two sons in college, and two VERY hormanal daughters in high school. Half the time I want to kill them, but that just means we are chugging along normally for teens, and not focused on my cancer. You're a teacher, you're used to this.

It will get better, as you understand what needs to be done.

Prayers for you and your family.

TracyLee Stage IV  (ipi AND BRAF – been there, done that)

Lizzy,

Welcome to the kindest, most supportive board out here! Sorry you had to join us…

Get a notebook, preferably with pockets. Jot down ALL questions, concerns, fears as they occur. This will help you when you are in doctor's offices. Ask questions until YOU are clear on the next step, when that occurs, why they want you to do it, etc.

If possible, take a supportive friend/family member. The second set of ears is so helpful, even with the notebook to refer back to.

Avoid "toxic" people. My mother-in-law is toxic "Oh my God, your kids won't have a mom". NOT what I plan, need to hear, or expect to happen. So, firm boundaries for the naysayers/gloom and doom types.

Make sure you are seeing a melanoma specialist. Travel if necessary for second opinions. Do not research/hang around the internet, it will drive you nuts and scare you to death. Ensure YOU have a good rapport/relationship with your doctor(s). It's your life, and if you just don't click, switch.

Hug your baby (in between tantrums). It's a stage. My oldest son had a semi permanent bump on his forehead from age 1-2, from throwing himself down and hitting his forehead on the floor! He's hardheaded (like me!). Enjoy your family, and the simple things. I have two sons in college, and two VERY hormanal daughters in high school. Half the time I want to kill them, but that just means we are chugging along normally for teens, and not focused on my cancer. You're a teacher, you're used to this.

It will get better, as you understand what needs to be done.

Prayers for you and your family.

TracyLee Stage IV  (ipi AND BRAF – been there, done that)

Hi, I am also stage 3a.  finished the last of the surgeries (complete lymph node dissection) in March 2010.  At that time I was only given two choices: wait and watch or interferon.  You might want to do a little research on interferon.  It still is the main treatment for stage 3a, I personally chose to wait and watch.  I believe there are now a few trials going on for stage three but if I remember correctly almost all of them are for non-resectable.  You can check on this web site for open trials.

Regarding testing for the BRAF gene.  They will need part of the original tumor to test. I had to switch Onc. because my original one switched coasts, and the new one wanted to test for it.  One catch, the insurance at first denied the test saying it was investigative.  I thought I was dead in the water being only 3a and zelboraf  not approved for my stage.  Somehow the Onc worked some magic and the insurance paid. 

As I have finally realized, stage 3 is not the end of the world.  You need to follow up very carefully with your scans.  You need to see a derm. regularly.  But other than that life goes on.  One thing you'll need to get on top of right away is possible lymphedema in you leg.  Ask for a script for a sock before surgery and get a script for message if you should need it.  Find a message specialist near you that has training in lymphedema.  If you catch it early you can control it.

Good Luck,

Mary

Hi, I am also stage 3a.  finished the last of the surgeries (complete lymph node dissection) in March 2010.  At that time I was only given two choices: wait and watch or interferon.  You might want to do a little research on interferon.  It still is the main treatment for stage 3a, I personally chose to wait and watch.  I believe there are now a few trials going on for stage three but if I remember correctly almost all of them are for non-resectable.  You can check on this web site for open trials.

Regarding testing for the BRAF gene.  They will need part of the original tumor to test. I had to switch Onc. because my original one switched coasts, and the new one wanted to test for it.  One catch, the insurance at first denied the test saying it was investigative.  I thought I was dead in the water being only 3a and zelboraf  not approved for my stage.  Somehow the Onc worked some magic and the insurance paid. 

As I have finally realized, stage 3 is not the end of the world.  You need to follow up very carefully with your scans.  You need to see a derm. regularly.  But other than that life goes on.  One thing you'll need to get on top of right away is possible lymphedema in you leg.  Ask for a script for a sock before surgery and get a script for message if you should need it.  Find a message specialist near you that has training in lymphedema.  If you catch it early you can control it.

Good Luck,

Mary

Hi, I am also stage 3a.  finished the last of the surgeries (complete lymph node dissection) in March 2010.  At that time I was only given two choices: wait and watch or interferon.  You might want to do a little research on interferon.  It still is the main treatment for stage 3a, I personally chose to wait and watch.  I believe there are now a few trials going on for stage three but if I remember correctly almost all of them are for non-resectable.  You can check on this web site for open trials.

Regarding testing for the BRAF gene.  They will need part of the original tumor to test. I had to switch Onc. because my original one switched coasts, and the new one wanted to test for it.  One catch, the insurance at first denied the test saying it was investigative.  I thought I was dead in the water being only 3a and zelboraf  not approved for my stage.  Somehow the Onc worked some magic and the insurance paid. 

As I have finally realized, stage 3 is not the end of the world.  You need to follow up very carefully with your scans.  You need to see a derm. regularly.  But other than that life goes on.  One thing you'll need to get on top of right away is possible lymphedema in you leg.  Ask for a script for a sock before surgery and get a script for message if you should need it.  Find a message specialist near you that has training in lymphedema.  If you catch it early you can control it.

Good Luck,

Mary

One of the best things I ever did was to set up a google alert for metastatic melanoma.  If you read it every day, it can be like learning a foreign language.  Stage IIIA is no picnic, I would look out for a vaccine trial in case you progressed to Stage IV.  Yervoy is a very effective medication, that and IL2 both use the immune system and tend to have lasting effects.  A vaccine would prime the pump.

Then again, you may never progress, I hope that is what happens.  In the meantime, the best strategy is to be prepared, it can lower stress significantly once you progress.

One of the best things I ever did was to set up a google alert for metastatic melanoma.  If you read it every day, it can be like learning a foreign language.  Stage IIIA is no picnic, I would look out for a vaccine trial in case you progressed to Stage IV.  Yervoy is a very effective medication, that and IL2 both use the immune system and tend to have lasting effects.  A vaccine would prime the pump.

Then again, you may never progress, I hope that is what happens.  In the meantime, the best strategy is to be prepared, it can lower stress significantly once you progress.

One of the best things I ever did was to set up a google alert for metastatic melanoma.  If you read it every day, it can be like learning a foreign language.  Stage IIIA is no picnic, I would look out for a vaccine trial in case you progressed to Stage IV.  Yervoy is a very effective medication, that and IL2 both use the immune system and tend to have lasting effects.  A vaccine would prime the pump.

Then again, you may never progress, I hope that is what happens.  In the meantime, the best strategy is to be prepared, it can lower stress significantly once you progress.

There are lots of people here who have a lot of information. Most important thing is to see a specialist in melanoma. Seek lots of information. Ask lots of questions. If you aren’t comfortable researching, ask your husband or your best friend to do it.

Live every day to the fullest!

There are lots of people here who have a lot of information. Most important thing is to see a specialist in melanoma. Seek lots of information. Ask lots of questions. If you aren’t comfortable researching, ask your husband or your best friend to do it.

Live every day to the fullest!

There are lots of people here who have a lot of information. Most important thing is to see a specialist in melanoma. Seek lots of information. Ask lots of questions. If you aren’t comfortable researching, ask your husband or your best friend to do it.

Live every day to the fullest!

One good plaace to start is at the Melanoma Molecular Disease Model at

http://mmdm.cancercommons.org/ml/index.php/A_Melanoma_Molecular_Disease_Model

Feel very welcome to come back here to ask any questions that this informative article brings to your mind.

Your Oncologist should be able to get Oncoprotein and DNA mutations tests run on the removed tumor tissues.

yervoy and zelboraf are both available for prescribing by any Oncologist now that they hve been approved by the FDA.  The zelboraf requires a positive test for the V600E braf mutation and is considered a targeted drug.  The yervoy (ipi) is a much more general melanoma immunology treatment for helping trai the immune system to fight melanoma.

If you are loo king at clinical trials, you should also look at MEK, PD-1 and others.

You should be seeing a Melanoma specialist and should get copies of all your paperwork, lab reports, pathology reports,. radiology reports, bloodwork, discs of your PET and CT scans.

This is a good place of caring people that are more informed than may Oncologists are about wht is going on in the speial world of  melanoma. 

One important thing is to not let melanoma make one too paranoid, It should make one very vigalent and in  search for knowledge to fight this war. 

   Do not fall into the trap/mindset taht much of the intrnet can leaad one to, that says that melanoma is an immediate death,  I was misdiagnosed for over 3 1/2 years slow rolled and then got to some grat specialists.  I have not been NED (no evidence of disease) since diagnosis in 2006.  I went to Stage IV in early 20007 aand have not acceptd yet that melanoma has to win this war.

 Learn aand go by what seems right for you.  I did and am still here fighting (and living!)

One good plaace to start is at the Melanoma Molecular Disease Model at

http://mmdm.cancercommons.org/ml/index.php/A_Melanoma_Molecular_Disease_Model

Feel very welcome to come back here to ask any questions that this informative article brings to your mind.

Your Oncologist should be able to get Oncoprotein and DNA mutations tests run on the removed tumor tissues.

yervoy and zelboraf are both available for prescribing by any Oncologist now that they hve been approved by the FDA.  The zelboraf requires a positive test for the V600E braf mutation and is considered a targeted drug.  The yervoy (ipi) is a much more general melanoma immunology treatment for helping trai the immune system to fight melanoma.

If you are loo king at clinical trials, you should also look at MEK, PD-1 and others.

You should be seeing a Melanoma specialist and should get copies of all your paperwork, lab reports, pathology reports,. radiology reports, bloodwork, discs of your PET and CT scans.

This is a good place of caring people that are more informed than may Oncologists are about wht is going on in the speial world of  melanoma. 

One important thing is to not let melanoma make one too paranoid, It should make one very vigalent and in  search for knowledge to fight this war. 

   Do not fall into the trap/mindset taht much of the intrnet can leaad one to, that says that melanoma is an immediate death,  I was misdiagnosed for over 3 1/2 years slow rolled and then got to some grat specialists.  I have not been NED (no evidence of disease) since diagnosis in 2006.  I went to Stage IV in early 20007 aand have not acceptd yet that melanoma has to win this war.

 Learn aand go by what seems right for you.  I did and am still here fighting (and living!)

One good plaace to start is at the Melanoma Molecular Disease Model at

http://mmdm.cancercommons.org/ml/index.php/A_Melanoma_Molecular_Disease_Model

Feel very welcome to come back here to ask any questions that this informative article brings to your mind.

Your Oncologist should be able to get Oncoprotein and DNA mutations tests run on the removed tumor tissues.

yervoy and zelboraf are both available for prescribing by any Oncologist now that they hve been approved by the FDA.  The zelboraf requires a positive test for the V600E braf mutation and is considered a targeted drug.  The yervoy (ipi) is a much more general melanoma immunology treatment for helping trai the immune system to fight melanoma.

If you are loo king at clinical trials, you should also look at MEK, PD-1 and others.

You should be seeing a Melanoma specialist and should get copies of all your paperwork, lab reports, pathology reports,. radiology reports, bloodwork, discs of your PET and CT scans.

This is a good place of caring people that are more informed than may Oncologists are about wht is going on in the speial world of  melanoma. 

One important thing is to not let melanoma make one too paranoid, It should make one very vigalent and in  search for knowledge to fight this war. 

   Do not fall into the trap/mindset taht much of the intrnet can leaad one to, that says that melanoma is an immediate death,  I was misdiagnosed for over 3 1/2 years slow rolled and then got to some grat specialists.  I have not been NED (no evidence of disease) since diagnosis in 2006.  I went to Stage IV in early 20007 aand have not acceptd yet that melanoma has to win this war.

 Learn aand go by what seems right for you.  I did and am still here fighting (and living!)