Treatment options

Sorry for all that you are dealing with when I'm sure all you really want to focus on are your two little ones.  Here is a compilation of trials listed as adjuvants for melanoma:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/studies-listed-as-adjuvants-for.html

Trials for NED folks are hard to come by, and I am not by any means advocating all of these…nor would you qualify for all of them…as some are for Stage IV patients, etc.  But, if you are looking for options…these may be at least worth looking through.

This is a trial I participated in:

http://clinicaltrials.gov/ct2/show/NCT01176474?term=melanoma+adjuvant&rank=160

…first cohort…NED arm at Stage IV with nivo and peptide vaccines.  A new cohort has recently been added for the ipi/nivo combo.  I was told this at my last follow-up visit:

A new cohort #5 has been created.  It will accept 1,500 resected melanoma patients, from Stage III B/C to Stage IV.  Due to the high incidence of side effects with the prior combo….the dosages were flipped.  These patients will now be given Nivo at 3mg/kg and Ipi at 1 mg/kg.  Side effects remain a concern, especially for those at Stage IIIB as their risk for their melanoma is less than that of NED patients Staged IIIC/IV, and such side effects always have to be weighed against risk of disease, but should be decreased for everyone with this particular dosing plan.  There is no HLA typing requirement as no vaccines will be given.

Look at the bottom of the clinicaltrials.gov page and you will see the reference to the new cohort.  However, there is a discrepancy in the stage I was told they were accepting and the ones listed.  So, again, not sure if you would qualify or if you would even be interested.  If you are interested in learning more details…a call to Moffitt Cancer Center in Tampa, Florida might give you the info you need.

I wish you my best.  Celeste

Sorry for all that you are dealing with when I'm sure all you really want to focus on are your two little ones.  Here is a compilation of trials listed as adjuvants for melanoma:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/studies-listed-as-adjuvants-for.html

Trials for NED folks are hard to come by, and I am not by any means advocating all of these…nor would you qualify for all of them…as some are for Stage IV patients, etc.  But, if you are looking for options…these may be at least worth looking through.

This is a trial I participated in:

http://clinicaltrials.gov/ct2/show/NCT01176474?term=melanoma+adjuvant&rank=160

…first cohort…NED arm at Stage IV with nivo and peptide vaccines.  A new cohort has recently been added for the ipi/nivo combo.  I was told this at my last follow-up visit:

A new cohort #5 has been created.  It will accept 1,500 resected melanoma patients, from Stage III B/C to Stage IV.  Due to the high incidence of side effects with the prior combo….the dosages were flipped.  These patients will now be given Nivo at 3mg/kg and Ipi at 1 mg/kg.  Side effects remain a concern, especially for those at Stage IIIB as their risk for their melanoma is less than that of NED patients Staged IIIC/IV, and such side effects always have to be weighed against risk of disease, but should be decreased for everyone with this particular dosing plan.  There is no HLA typing requirement as no vaccines will be given.

Look at the bottom of the clinicaltrials.gov page and you will see the reference to the new cohort.  However, there is a discrepancy in the stage I was told they were accepting and the ones listed.  So, again, not sure if you would qualify or if you would even be interested.  If you are interested in learning more details…a call to Moffitt Cancer Center in Tampa, Florida might give you the info you need.

I wish you my best.  Celeste

Sorry for all that you are dealing with when I'm sure all you really want to focus on are your two little ones.  Here is a compilation of trials listed as adjuvants for melanoma:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/studies-listed-as-adjuvants-for.html

Trials for NED folks are hard to come by, and I am not by any means advocating all of these…nor would you qualify for all of them…as some are for Stage IV patients, etc.  But, if you are looking for options…these may be at least worth looking through.

This is a trial I participated in:

http://clinicaltrials.gov/ct2/show/NCT01176474?term=melanoma+adjuvant&rank=160

…first cohort…NED arm at Stage IV with nivo and peptide vaccines.  A new cohort has recently been added for the ipi/nivo combo.  I was told this at my last follow-up visit:

A new cohort #5 has been created.  It will accept 1,500 resected melanoma patients, from Stage III B/C to Stage IV.  Due to the high incidence of side effects with the prior combo….the dosages were flipped.  These patients will now be given Nivo at 3mg/kg and Ipi at 1 mg/kg.  Side effects remain a concern, especially for those at Stage IIIB as their risk for their melanoma is less than that of NED patients Staged IIIC/IV, and such side effects always have to be weighed against risk of disease, but should be decreased for everyone with this particular dosing plan.  There is no HLA typing requirement as no vaccines will be given.

Look at the bottom of the clinicaltrials.gov page and you will see the reference to the new cohort.  However, there is a discrepancy in the stage I was told they were accepting and the ones listed.  So, again, not sure if you would qualify or if you would even be interested.  If you are interested in learning more details…a call to Moffitt Cancer Center in Tampa, Florida might give you the info you need.

I wish you my best.  Celeste

Hi Lav4789, just wanted to say a few things about interferon. There are many people over the last few months that have asked this same question on the forum. Do I do interferon? or do nothing? many have written there experiences with the drug. I did it for the first month of high dose, and it wasn't very much fun. They had to keep lowering my dose because my liver # we not good. As a family we decided to stop at the end of the month. The main reason was the toxic nature and we have a daughter who was 3 at the time and who is now almost 6. I couldn't do anything for that month, in bed or on the couch most of the time. I wouldn't wish the side effects that I had on my worst enemy. I decided like many to do the drug because the idea of doing nothing is not in my character. I won't waste your time with my whole story here, if you are interested you can look at my profile. Do your own research on the drug or visit some of the people who blog about melanoma, most have links to the data on Interferon. I don't have experience on Vemurafenib since I don't have the braf mutation so targeted therapies wouldn't work for me. If they found more cancer when they went back in, I think that changes the stage to a 3a. That's how it worked for me a couple of years ago. The doc's tend to give more aggressive advice when the chance of the melanoma returning is higher. I don't see anything about you being seen by a  melanoma specialist. Finding one would be your best next decision from where I sit. Best of luck!!!! Ed

Hi Lav4789, just wanted to say a few things about interferon. There are many people over the last few months that have asked this same question on the forum. Do I do interferon? or do nothing? many have written there experiences with the drug. I did it for the first month of high dose, and it wasn't very much fun. They had to keep lowering my dose because my liver # we not good. As a family we decided to stop at the end of the month. The main reason was the toxic nature and we have a daughter who was 3 at the time and who is now almost 6. I couldn't do anything for that month, in bed or on the couch most of the time. I wouldn't wish the side effects that I had on my worst enemy. I decided like many to do the drug because the idea of doing nothing is not in my character. I won't waste your time with my whole story here, if you are interested you can look at my profile. Do your own research on the drug or visit some of the people who blog about melanoma, most have links to the data on Interferon. I don't have experience on Vemurafenib since I don't have the braf mutation so targeted therapies wouldn't work for me. If they found more cancer when they went back in, I think that changes the stage to a 3a. That's how it worked for me a couple of years ago. The doc's tend to give more aggressive advice when the chance of the melanoma returning is higher. I don't see anything about you being seen by a  melanoma specialist. Finding one would be your best next decision from where I sit. Best of luck!!!! Ed

Hi Lav4789, just wanted to say a few things about interferon. There are many people over the last few months that have asked this same question on the forum. Do I do interferon? or do nothing? many have written there experiences with the drug. I did it for the first month of high dose, and it wasn't very much fun. They had to keep lowering my dose because my liver # we not good. As a family we decided to stop at the end of the month. The main reason was the toxic nature and we have a daughter who was 3 at the time and who is now almost 6. I couldn't do anything for that month, in bed or on the couch most of the time. I wouldn't wish the side effects that I had on my worst enemy. I decided like many to do the drug because the idea of doing nothing is not in my character. I won't waste your time with my whole story here, if you are interested you can look at my profile. Do your own research on the drug or visit some of the people who blog about melanoma, most have links to the data on Interferon. I don't have experience on Vemurafenib since I don't have the braf mutation so targeted therapies wouldn't work for me. If they found more cancer when they went back in, I think that changes the stage to a 3a. That's how it worked for me a couple of years ago. The doc's tend to give more aggressive advice when the chance of the melanoma returning is higher. I don't see anything about you being seen by a  melanoma specialist. Finding one would be your best next decision from where I sit. Best of luck!!!! Ed

Have you heard of Doterra DDR?  It's a natural essential oil that has a 70% rate of shrinking tumors and clearing cancer.

Also, Rick Simpson oil has a very high success rate for late stage cancer.  Unfortunately the govn't is not letting the word get out, cause they don't make as much money when the product works!  Rick Simpson has helped 5000 become free of late stage cancer, I recently learned.

I have symptoms of a tumor that are no longer present b/c of Doterra!   But you have to drink a lot of water with it.

Both of the above have no real side effects or are hard on the body b/c they are natural.

Good luck:)

Have you heard of Doterra DDR?  It's a natural essential oil that has a 70% rate of shrinking tumors and clearing cancer.

Also, Rick Simpson oil has a very high success rate for late stage cancer.  Unfortunately the govn't is not letting the word get out, cause they don't make as much money when the product works!  Rick Simpson has helped 5000 become free of late stage cancer, I recently learned.

I have symptoms of a tumor that are no longer present b/c of Doterra!   But you have to drink a lot of water with it.

Both of the above have no real side effects or are hard on the body b/c they are natural.

Good luck:)

Have you heard of Doterra DDR?  It's a natural essential oil that has a 70% rate of shrinking tumors and clearing cancer.

Also, Rick Simpson oil has a very high success rate for late stage cancer.  Unfortunately the govn't is not letting the word get out, cause they don't make as much money when the product works!  Rick Simpson has helped 5000 become free of late stage cancer, I recently learned.

I have symptoms of a tumor that are no longer present b/c of Doterra!   But you have to drink a lot of water with it.

Both of the above have no real side effects or are hard on the body b/c they are natural.

Good luck:)