New Diagnosis – Rushed to treatment – Not sure if we did the right thing

I'm sorry to hear about your wife's diagnosis.  I understand that all of this can be very confusing and overwhelming.  There are many reasons to go see a melanoma specialist.  One of them being that they are familiar and "in touch" with all the clinical trials and treatments and they can help you navigate this.  Ipi is still a current treatment and is being combined with other treatments to "speak" to a specific gene mutation.  If you are in Greenville, you are fairly close to Charlotte.  Dr. Asim Amin and Dr. Richard White are melanoma specialist at Carolinas Medical Center and Levine Cancer institiute.  They were my husbands doctors and in our opinion the best we could have had.  Just a suggestion.  I wish you and your wife the best. 

Melissa

I'm sorry to hear about your wife's diagnosis.  I understand that all of this can be very confusing and overwhelming.  There are many reasons to go see a melanoma specialist.  One of them being that they are familiar and "in touch" with all the clinical trials and treatments and they can help you navigate this.  Ipi is still a current treatment and is being combined with other treatments to "speak" to a specific gene mutation.  If you are in Greenville, you are fairly close to Charlotte.  Dr. Asim Amin and Dr. Richard White are melanoma specialist at Carolinas Medical Center and Levine Cancer institiute.  They were my husbands doctors and in our opinion the best we could have had.  Just a suggestion.  I wish you and your wife the best. 

Melissa

I'm sorry to hear about your wife's diagnosis.  I understand that all of this can be very confusing and overwhelming.  There are many reasons to go see a melanoma specialist.  One of them being that they are familiar and "in touch" with all the clinical trials and treatments and they can help you navigate this.  Ipi is still a current treatment and is being combined with other treatments to "speak" to a specific gene mutation.  If you are in Greenville, you are fairly close to Charlotte.  Dr. Asim Amin and Dr. Richard White are melanoma specialist at Carolinas Medical Center and Levine Cancer institiute.  They were my husbands doctors and in our opinion the best we could have had.  Just a suggestion.  I wish you and your wife the best. 

Melissa

Hey JP,

I think sound decisions were made with record speed…and that IS important!!!  Ipi is still relatively new with good results…some of latest data is confirming 10 year survival and durable repsonse for some.  (Synopsis of that article is on my blog should you want to look at it.  Data was gathered from folks who did early trials as it has been FDA approved only since 2011 or so.)  Learning her BRAF status is important.  Starting with ipi, if the anti-PD1 drugs were on the market, (and hopefully they will be soon) wouldn't be a bad decision, even then.  You will still have them as an option should you need them.  Additionally, to qualify for the expanded use of the Merck anti-PD1 product you must have already failed ipi, as well as the BRAF inhibitors should you be BRAF positive.  So…I say…well done.

My only question would be whether or not she had an MRI of the brain?  That is a very important place to check for additionaly metastasis and a PET is not the best way to look for them there.

Sorry both your lives got turned upside down this way.  But, I think you have done well.  Hang in there.  Wishing you both my best.  Celeste

Hey JP,

I think sound decisions were made with record speed…and that IS important!!!  Ipi is still relatively new with good results…some of latest data is confirming 10 year survival and durable repsonse for some.  (Synopsis of that article is on my blog should you want to look at it.  Data was gathered from folks who did early trials as it has been FDA approved only since 2011 or so.)  Learning her BRAF status is important.  Starting with ipi, if the anti-PD1 drugs were on the market, (and hopefully they will be soon) wouldn't be a bad decision, even then.  You will still have them as an option should you need them.  Additionally, to qualify for the expanded use of the Merck anti-PD1 product you must have already failed ipi, as well as the BRAF inhibitors should you be BRAF positive.  So…I say…well done.

My only question would be whether or not she had an MRI of the brain?  That is a very important place to check for additionaly metastasis and a PET is not the best way to look for them there.

Sorry both your lives got turned upside down this way.  But, I think you have done well.  Hang in there.  Wishing you both my best.  Celeste

Hey JP,

I think sound decisions were made with record speed…and that IS important!!!  Ipi is still relatively new with good results…some of latest data is confirming 10 year survival and durable repsonse for some.  (Synopsis of that article is on my blog should you want to look at it.  Data was gathered from folks who did early trials as it has been FDA approved only since 2011 or so.)  Learning her BRAF status is important.  Starting with ipi, if the anti-PD1 drugs were on the market, (and hopefully they will be soon) wouldn't be a bad decision, even then.  You will still have them as an option should you need them.  Additionally, to qualify for the expanded use of the Merck anti-PD1 product you must have already failed ipi, as well as the BRAF inhibitors should you be BRAF positive.  So…I say…well done.

My only question would be whether or not she had an MRI of the brain?  That is a very important place to check for additionaly metastasis and a PET is not the best way to look for them there.

Sorry both your lives got turned upside down this way.  But, I think you have done well.  Hang in there.  Wishing you both my best.  Celeste

JP,

Sorry for your wife's recent diagnosis.  I think you are doing a good job with the Ipi so far.  Sometimes even when you have lots of time the process can be overwhelming.  I'm not too far from you in Atlantic Beach.  Duke isn't a bad place to check out but they aren't on the leading edge of melanoma treatment IMHO.  They do have one of the best surgical oncologist there, again IMHO, Dr. Tyler.  If you end up needing surgery sometime in the future I would highly recommend him.  I currently travel to UVA for a clinical trial.  I think they have a few doctors there that are very good in regards to melanoma.  I'm not as familiar with the UNC Chapel Hill, WInstom-Salem, or Charlotte area docs but I think there are some good ones there as well.  Another great option for the future could be NIH in Bethesda, MD.  For now I think you are on a good plan.  I think what you need to do now as you wait to see how your wife responds to Ipi is start educating yourself on the various treatment options and start thinking about what a plan B and C would be for you in the event you don't respond as well as you would like to Ipi.

As far as Ipi goes, as the Docs will tell you, stay on top of the GI stuff.  Don't let Diarhea get out of hand.  That could be bad.  Also, let your wife know about the possible side effect of hypophysitis.  There's a few of us on this site that had that side effect.  For me it manifested itself in what started as a mild sinus headache that gradually got worse over the course of a couple weeks.  It's another side effect that if treated early is no problem but if you don't treat it early in can lead to long term pituitary issues.  I think with almost all these immunotherapy treatments that can cause liver toxicities drinking water is paramount.  Good luck to the both of you.

Brian

JP,

Sorry for your wife's recent diagnosis.  I think you are doing a good job with the Ipi so far.  Sometimes even when you have lots of time the process can be overwhelming.  I'm not too far from you in Atlantic Beach.  Duke isn't a bad place to check out but they aren't on the leading edge of melanoma treatment IMHO.  They do have one of the best surgical oncologist there, again IMHO, Dr. Tyler.  If you end up needing surgery sometime in the future I would highly recommend him.  I currently travel to UVA for a clinical trial.  I think they have a few doctors there that are very good in regards to melanoma.  I'm not as familiar with the UNC Chapel Hill, WInstom-Salem, or Charlotte area docs but I think there are some good ones there as well.  Another great option for the future could be NIH in Bethesda, MD.  For now I think you are on a good plan.  I think what you need to do now as you wait to see how your wife responds to Ipi is start educating yourself on the various treatment options and start thinking about what a plan B and C would be for you in the event you don't respond as well as you would like to Ipi.

As far as Ipi goes, as the Docs will tell you, stay on top of the GI stuff.  Don't let Diarhea get out of hand.  That could be bad.  Also, let your wife know about the possible side effect of hypophysitis.  There's a few of us on this site that had that side effect.  For me it manifested itself in what started as a mild sinus headache that gradually got worse over the course of a couple weeks.  It's another side effect that if treated early is no problem but if you don't treat it early in can lead to long term pituitary issues.  I think with almost all these immunotherapy treatments that can cause liver toxicities drinking water is paramount.  Good luck to the both of you.

Brian

JP,

Sorry for your wife's recent diagnosis.  I think you are doing a good job with the Ipi so far.  Sometimes even when you have lots of time the process can be overwhelming.  I'm not too far from you in Atlantic Beach.  Duke isn't a bad place to check out but they aren't on the leading edge of melanoma treatment IMHO.  They do have one of the best surgical oncologist there, again IMHO, Dr. Tyler.  If you end up needing surgery sometime in the future I would highly recommend him.  I currently travel to UVA for a clinical trial.  I think they have a few doctors there that are very good in regards to melanoma.  I'm not as familiar with the UNC Chapel Hill, WInstom-Salem, or Charlotte area docs but I think there are some good ones there as well.  Another great option for the future could be NIH in Bethesda, MD.  For now I think you are on a good plan.  I think what you need to do now as you wait to see how your wife responds to Ipi is start educating yourself on the various treatment options and start thinking about what a plan B and C would be for you in the event you don't respond as well as you would like to Ipi.

As far as Ipi goes, as the Docs will tell you, stay on top of the GI stuff.  Don't let Diarhea get out of hand.  That could be bad.  Also, let your wife know about the possible side effect of hypophysitis.  There's a few of us on this site that had that side effect.  For me it manifested itself in what started as a mild sinus headache that gradually got worse over the course of a couple weeks.  It's another side effect that if treated early is no problem but if you don't treat it early in can lead to long term pituitary issues.  I think with almost all these immunotherapy treatments that can cause liver toxicities drinking water is paramount.  Good luck to the both of you.

Brian