MorningGlory

Thank you all for sharing your incredible stories.  I have recently had a recurrence of my anal mucosal melanoma in the general area of my first surgery.  I did the year of interferon and am considering looking into the anti PD1 trial.  Intiially was diagnosed as 3B, now I am likely 3C.  Don't like the watch and wait plan proposed by my onc.  He wants to repeat PET/CTs in 3 mos.  I would rather be proactive in this approach.  Seems that there are many options to consider, and surely I must meet criteria for something.  I am Braf and Ckit negative.  Any input that you have would be greatly appreciated.

Jackie

Thank you all for sharing your incredible stories.  I have recently had a recurrence of my anal mucosal melanoma in the general area of my first surgery.  I did the year of interferon and am considering looking into the anti PD1 trial.  Intiially was diagnosed as 3B, now I am likely 3C.  Don't like the watch and wait plan proposed by my onc.  He wants to repeat PET/CTs in 3 mos.  I would rather be proactive in this approach.  Seems that there are many options to consider, and surely I must meet criteria for something.  I am Braf and Ckit negative.  Any input that you have would be greatly appreciated.

Jackie

Thank you all for sharing your incredible stories.  I have recently had a recurrence of my anal mucosal melanoma in the general area of my first surgery.  I did the year of interferon and am considering looking into the anti PD1 trial.  Intiially was diagnosed as 3B, now I am likely 3C.  Don't like the watch and wait plan proposed by my onc.  He wants to repeat PET/CTs in 3 mos.  I would rather be proactive in this approach.  Seems that there are many options to consider, and surely I must meet criteria for something.  I am Braf and Ckit negative.  Any input that you have would be greatly appreciated.

Jackie

Jerry,

So happy to hear that you continue to do well.  That is wonderful news, Jerry.

Jackie

Jerry,

So happy to hear that you continue to do well.  That is wonderful news, Jerry.

Jackie

Jerry,

So happy to hear that you continue to do well.  That is wonderful news, Jerry.

Jackie

Hi Vikas,

So sorry that your father is battling this illness.  Bless you for seeking the best care for him.  This is a rare cancer which is treated differently from individual to individual and hospital to hospital.  I know of a few of us and no two have received the same treatment plan. 

As Jeannine mentioned, Dana Farber and MD Anderson are renowned facilities.  I have had my surgeries and treatments at University of Pittsburgh Medical Center.  It would be good for your father to be cared for by someone that has dealt with mucosal melanoma in the past.

I was diagnosed in July, 08 as stage 3B.  I had the abdominal/peritoneal resection with a colostomy, a lymph node dissection with 1 positive node and a year of interferon.  This summer will mark 4 years since my diagnosis. 

I will gladly answer any further questions that you may have.  I am 50.  How old is your dad?

Saying prayers for healing for your dad. 

Be well,

Jackie

Hi Vikas,

So sorry that your father is battling this illness.  Bless you for seeking the best care for him.  This is a rare cancer which is treated differently from individual to individual and hospital to hospital.  I know of a few of us and no two have received the same treatment plan. 

As Jeannine mentioned, Dana Farber and MD Anderson are renowned facilities.  I have had my surgeries and treatments at University of Pittsburgh Medical Center.  It would be good for your father to be cared for by someone that has dealt with mucosal melanoma in the past.

I was diagnosed in July, 08 as stage 3B.  I had the abdominal/peritoneal resection with a colostomy, a lymph node dissection with 1 positive node and a year of interferon.  This summer will mark 4 years since my diagnosis. 

I will gladly answer any further questions that you may have.  I am 50.  How old is your dad?

Saying prayers for healing for your dad. 

Be well,

Jackie

Hi Vikas,

So sorry that your father is battling this illness.  Bless you for seeking the best care for him.  This is a rare cancer which is treated differently from individual to individual and hospital to hospital.  I know of a few of us and no two have received the same treatment plan. 

As Jeannine mentioned, Dana Farber and MD Anderson are renowned facilities.  I have had my surgeries and treatments at University of Pittsburgh Medical Center.  It would be good for your father to be cared for by someone that has dealt with mucosal melanoma in the past.

I was diagnosed in July, 08 as stage 3B.  I had the abdominal/peritoneal resection with a colostomy, a lymph node dissection with 1 positive node and a year of interferon.  This summer will mark 4 years since my diagnosis. 

I will gladly answer any further questions that you may have.  I am 50.  How old is your dad?

Saying prayers for healing for your dad. 

Be well,

Jackie

Hi Jeannine,

I too believe that everything happens for a reason, and we may never know the reasons why.

I like the lady at church!  How wonderful and encouraging to have her acknowledge your victories. Give her some pom poms, 'cause you've got a cheerleader!

Since being diagnosed, things have just become clearer for me. Every blessing is a miracle, and everday is too.  I am so much more grateful for so many more things.

I have learned so much about myself and my christian relationships, including that with our Saviour.

Be Well,

♥ Jackie

Hi Jeannine,

I too believe that everything happens for a reason, and we may never know the reasons why.

I like the lady at church!  How wonderful and encouraging to have her acknowledge your victories. Give her some pom poms, 'cause you've got a cheerleader!

Since being diagnosed, things have just become clearer for me. Every blessing is a miracle, and everday is too.  I am so much more grateful for so many more things.

I have learned so much about myself and my christian relationships, including that with our Saviour.

Be Well,

♥ Jackie

Hi Jeannine,

I hope that you are finding some peace since being in contact with "others of us." 

I agree with Jerry about the staging.  I was diagnosed at IIIB. This is my interpretation of it:  I am a 3 because I had lymph node involvement, and B because, although it only involved one positive node, it was large.  Hope that helps answer your question.

As far as which came first (the cancer or the size?) I would guess the cancer.  But that is just a guess.

I was diagnosed at age 46.  I am now 49.  I'm married with 2 sons that are both starting their first teaching jobs.  They are 22 and 24.

As Deb said, I have also bargained with God and prayer saying, "Please just let me see my kids get through college, then please just let me see them find love, and please just let me see them find jobs."  I keep revising my prayers too!  I want to be here for a long time yet.  I'd like to see grandchildren some day (down the road!)

I am so glad that Phil is back to work and enjoying time with the kids.

I find it so energizing to hear about other's victories over this obstacle. 

Be well.

God's blessings to you,

Jackie

Hi Jeannine,

I hope that you are finding some peace since being in contact with "others of us." 

I agree with Jerry about the staging.  I was diagnosed at IIIB. This is my interpretation of it:  I am a 3 because I had lymph node involvement, and B because, although it only involved one positive node, it was large.  Hope that helps answer your question.

As far as which came first (the cancer or the size?) I would guess the cancer.  But that is just a guess.

I was diagnosed at age 46.  I am now 49.  I'm married with 2 sons that are both starting their first teaching jobs.  They are 22 and 24.

As Deb said, I have also bargained with God and prayer saying, "Please just let me see my kids get through college, then please just let me see them find love, and please just let me see them find jobs."  I keep revising my prayers too!  I want to be here for a long time yet.  I'd like to see grandchildren some day (down the road!)

I am so glad that Phil is back to work and enjoying time with the kids.

I find it so energizing to hear about other's victories over this obstacle. 

Be well.

God's blessings to you,

Jackie

Hi Jeannine,

My name is Jackie.  I have been a registered member of this site for quite a while, but I'm pretty sure I've never posted.

As you already know, you are not alone in this journey.  I was diagnosed in 7/08 with anal mucosal melanoma, stage IIIb.  I thought I had a hemorrhoid.  I had an APR (abdominal-peritoneal resection), with colostomy, total hyster, and lymph node dissection, with one positive node. I did have a year of interferon. I am happy to report that I have celebrated 3 years since my diagnosis.  I feel wonderful.

I would like to offer you hope and encouragement.  It is so hard when you're first diagnosed.  It felt like it was all a dream.  I hope that you have wonderful friends and family to surround and support you.

You will find good information here and people that can truly relate to your circumstance.  Please feel free to ask me any questions about my journey

Blessings to you,

Jackie

Hi Jeannine,

My name is Jackie.  I have been a registered member of this site for quite a while, but I'm pretty sure I've never posted.

As you already know, you are not alone in this journey.  I was diagnosed in 7/08 with anal mucosal melanoma, stage IIIb.  I thought I had a hemorrhoid.  I had an APR (abdominal-peritoneal resection), with colostomy, total hyster, and lymph node dissection, with one positive node. I did have a year of interferon. I am happy to report that I have celebrated 3 years since my diagnosis.  I feel wonderful.

I would like to offer you hope and encouragement.  It is so hard when you're first diagnosed.  It felt like it was all a dream.  I hope that you have wonderful friends and family to surround and support you.

You will find good information here and people that can truly relate to your circumstance.  Please feel free to ask me any questions about my journey

Blessings to you,

Jackie