The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Jean-9

Forum Replies Created

Viewing 8 reply threads
  • Replies
      Jean-9
      Participant

      Hi Cathy,

      I am so sorry that you are dealing with this awful cancer and that unfortunately just saw your post.  The best advice I ever got was to go for a second opinion from the hospital/Dr. that knows your cancer the best.. 

      I went to Dana Farber for a second opinon a month after the surger to remove the rest of the lesion and the sentinal lymph nodes.  I really attribute the fact that I have the right course of treatment to the skilled Doctors there.  I see Dr. F. Stephen Hodi, oncologist, Dr. Sara Russell, Surgical Oncologist and Dr. Andrew Werchniak.  They have been absolutely wonderful and I am totally confident that in my care.

      Jerry has a wealth of information on the newest research.  Please feel free to e-mail me if you would like to have more information.  I was diagnosed after having my "50" colonoscopy three years ago and remain NED!

      Please remember no doctor can tell you if you will live or die.  That is between you and God.

      God Bless,

      Jeannine

      Jean-9
      Participant

      Hi Cathy,

      I am so sorry that you are dealing with this awful cancer and that unfortunately just saw your post.  The best advice I ever got was to go for a second opinion from the hospital/Dr. that knows your cancer the best.. 

      I went to Dana Farber for a second opinon a month after the surger to remove the rest of the lesion and the sentinal lymph nodes.  I really attribute the fact that I have the right course of treatment to the skilled Doctors there.  I see Dr. F. Stephen Hodi, oncologist, Dr. Sara Russell, Surgical Oncologist and Dr. Andrew Werchniak.  They have been absolutely wonderful and I am totally confident that in my care.

      Jerry has a wealth of information on the newest research.  Please feel free to e-mail me if you would like to have more information.  I was diagnosed after having my "50" colonoscopy three years ago and remain NED!

      Please remember no doctor can tell you if you will live or die.  That is between you and God.

      God Bless,

      Jeannine

      Jean-9
      Participant

      Hi Cathy,

      I am so sorry that you are dealing with this awful cancer and that unfortunately just saw your post.  The best advice I ever got was to go for a second opinion from the hospital/Dr. that knows your cancer the best.. 

      I went to Dana Farber for a second opinon a month after the surger to remove the rest of the lesion and the sentinal lymph nodes.  I really attribute the fact that I have the right course of treatment to the skilled Doctors there.  I see Dr. F. Stephen Hodi, oncologist, Dr. Sara Russell, Surgical Oncologist and Dr. Andrew Werchniak.  They have been absolutely wonderful and I am totally confident that in my care.

      Jerry has a wealth of information on the newest research.  Please feel free to e-mail me if you would like to have more information.  I was diagnosed after having my "50" colonoscopy three years ago and remain NED!

      Please remember no doctor can tell you if you will live or die.  That is between you and God.

      God Bless,

      Jeannine

      Jean-9
      Participant

      Hi Rick,

      I am so sorry that you are faced with this diagnosis. Valerie and Jerry are the most experienced with this diagnosis. I am happy to say that it's been two years since my diagnosis and I am still NED.

      The best advice that I ever got was to go to the place that has the most experience with my type of cancer no matter where that is. I was very fortunate to go to Dana Farber. My Oncologist is Dr. Hodi, Surgical Oncologist is Dr. Russell and Dermatologist is Dr. Werchniack. I too had looked on line for any information possible. You have to observe that most of the information is at least 6 years old. There are new developments every DAY. This is not a death sentance. There are more and more people joining our group.  The one thing that kept me sane is a binder that kept my diagnosis, picture of my lesion, records of all my scans and a place for my questions, bios of all my doctors and any research that I found about anal melanoma. I am still on the 3-4 month check-up plan.  The biggest challenge that I still have is with my insurance company. Fight and demand the treatment that is best for you.  It takes more effort but is so worth it.  If you do decide to go out of your local hospital please make sure you get  copies of all your scans and reports.  The records don't travel to and from my local doctors to Dana Farber too well and it has saved a lot of anxiety having a copy for the Doctors at each appointment.  Please let us know how you are doing and feel free to contact me directly if you have any questions or just need to talk  – Jeannine

       k-jleblanc@comcast.net Ppppppp     PPP Pl  P  Pll Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net. Plea Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net.  Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net  Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net  Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net One   I  I 

      Jean-9
      Participant

      Hi Rick,

      I am so sorry that you are faced with this diagnosis. Valerie and Jerry are the most experienced with this diagnosis. I am happy to say that it's been two years since my diagnosis and I am still NED.

      The best advice that I ever got was to go to the place that has the most experience with my type of cancer no matter where that is. I was very fortunate to go to Dana Farber. My Oncologist is Dr. Hodi, Surgical Oncologist is Dr. Russell and Dermatologist is Dr. Werchniack. I too had looked on line for any information possible. You have to observe that most of the information is at least 6 years old. There are new developments every DAY. This is not a death sentance. There are more and more people joining our group.  The one thing that kept me sane is a binder that kept my diagnosis, picture of my lesion, records of all my scans and a place for my questions, bios of all my doctors and any research that I found about anal melanoma. I am still on the 3-4 month check-up plan.  The biggest challenge that I still have is with my insurance company. Fight and demand the treatment that is best for you.  It takes more effort but is so worth it.  If you do decide to go out of your local hospital please make sure you get  copies of all your scans and reports.  The records don't travel to and from my local doctors to Dana Farber too well and it has saved a lot of anxiety having a copy for the Doctors at each appointment.  Please let us know how you are doing and feel free to contact me directly if you have any questions or just need to talk  – Jeannine

       k-jleblanc@comcast.net Ppppppp     PPP Pl  P  Pll Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net. Plea Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net.  Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net  Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net  Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net One   I  I 

      Jean-9
      Participant

      Hi Rick,

      I am so sorry that you are faced with this diagnosis. Valerie and Jerry are the most experienced with this diagnosis. I am happy to say that it's been two years since my diagnosis and I am still NED.

      The best advice that I ever got was to go to the place that has the most experience with my type of cancer no matter where that is. I was very fortunate to go to Dana Farber. My Oncologist is Dr. Hodi, Surgical Oncologist is Dr. Russell and Dermatologist is Dr. Werchniack. I too had looked on line for any information possible. You have to observe that most of the information is at least 6 years old. There are new developments every DAY. This is not a death sentance. There are more and more people joining our group.  The one thing that kept me sane is a binder that kept my diagnosis, picture of my lesion, records of all my scans and a place for my questions, bios of all my doctors and any research that I found about anal melanoma. I am still on the 3-4 month check-up plan.  The biggest challenge that I still have is with my insurance company. Fight and demand the treatment that is best for you.  It takes more effort but is so worth it.  If you do decide to go out of your local hospital please make sure you get  copies of all your scans and reports.  The records don't travel to and from my local doctors to Dana Farber too well and it has saved a lot of anxiety having a copy for the Doctors at each appointment.  Please let us know how you are doing and feel free to contact me directly if you have any questions or just need to talk  – Jeannine

       k-jleblanc@comcast.net Ppppppp     PPP Pl  P  Pll Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net. Plea Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net.  Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net  Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net  Please feel free to contact me directly if you would like to talk. My e-mail is k-jleblanc@comcast.net One   I  I 

      Jean-9
      Participant

      Hi Jerry,  So glad that you had a great trip.  Congratulations on your 15th Grandchild!!  Stay healthy πŸ™‚  Jeannine

      Jean-9
      Participant

      Hi Jerry,  So glad that you had a great trip.  Congratulations on your 15th Grandchild!!  Stay healthy πŸ™‚  Jeannine

      Jean-9
      Participant

      Hi Jerry,  So glad that you had a great trip.  Congratulations on your 15th Grandchild!!  Stay healthy πŸ™‚  Jeannine

      Jean-9
      Participant

      Hello Vikas,

      I am so sorry that your Father has been diagnosed with Anal Melanoma.  I have found the Doctors at Dana Farber in Bobston MA to be wonderful and they were able to correctly diagnose my situation.http://www.dana-farber.org/  What I have learned over the last year is that everyone is different.  The size and shape of your father's lesion would also be an important factor in his treatment.  I know of several people who have also gone to MD Anderson in Texas.  http://www.mdanderson.org/locations/index.html  I wish you the very best of luck.  There are many people within the MRF site that have experience with other treatment and hospitals that I'm sure would share their story.  My treatment has been only surgery.  When they find a lump or a bump they cut it out.  I had some bumps on my scalp removed this week and will have another lesion removed from my anal area on Monday.  It is all expected to be fine and the surgeries are just a precaution. 

      I wish you and your father the best of luck.  I will add him to my prayer list. 

      Sincerely,

      Jeannine

      Jean-9
      Participant

      Hello Vikas,

      I am so sorry that your Father has been diagnosed with Anal Melanoma.  I have found the Doctors at Dana Farber in Bobston MA to be wonderful and they were able to correctly diagnose my situation.http://www.dana-farber.org/  What I have learned over the last year is that everyone is different.  The size and shape of your father's lesion would also be an important factor in his treatment.  I know of several people who have also gone to MD Anderson in Texas.  http://www.mdanderson.org/locations/index.html  I wish you the very best of luck.  There are many people within the MRF site that have experience with other treatment and hospitals that I'm sure would share their story.  My treatment has been only surgery.  When they find a lump or a bump they cut it out.  I had some bumps on my scalp removed this week and will have another lesion removed from my anal area on Monday.  It is all expected to be fine and the surgeries are just a precaution. 

      I wish you and your father the best of luck.  I will add him to my prayer list. 

      Sincerely,

      Jeannine

      Jean-9
      Participant

      Hello Vikas,

      I am so sorry that your Father has been diagnosed with Anal Melanoma.  I have found the Doctors at Dana Farber in Bobston MA to be wonderful and they were able to correctly diagnose my situation.http://www.dana-farber.org/  What I have learned over the last year is that everyone is different.  The size and shape of your father's lesion would also be an important factor in his treatment.  I know of several people who have also gone to MD Anderson in Texas.  http://www.mdanderson.org/locations/index.html  I wish you the very best of luck.  There are many people within the MRF site that have experience with other treatment and hospitals that I'm sure would share their story.  My treatment has been only surgery.  When they find a lump or a bump they cut it out.  I had some bumps on my scalp removed this week and will have another lesion removed from my anal area on Monday.  It is all expected to be fine and the surgeries are just a precaution. 

      I wish you and your father the best of luck.  I will add him to my prayer list. 

      Sincerely,

      Jeannine

      Jean-9
      Participant

      Hi Jackie,

      I am finding so much comfort in knowing that you all are out there still around to tell your powerful stories. 

      I have a tremendous amount of faith that everything happens for a reason and sometimes we are not the center of the reason. 

      It's funny when I go to serve at church there is this one older woman that I have known for years (her husband died of pancreatic cancer a few years back) who always has such profound statements.  A few weeks ago out of the blue she congratulated for being "cancer free".  This past weekend, again out of the blue, said "you got your miracle didn't you?)  I think God is trying to tell me something πŸ™‚   Every day is a blessing and a miracle!

      Wishing everyone clean scans!

      Jeannine

      Jean-9
      Participant

      Hi Jackie,

      I am finding so much comfort in knowing that you all are out there still around to tell your powerful stories. 

      I have a tremendous amount of faith that everything happens for a reason and sometimes we are not the center of the reason. 

      It's funny when I go to serve at church there is this one older woman that I have known for years (her husband died of pancreatic cancer a few years back) who always has such profound statements.  A few weeks ago out of the blue she congratulated for being "cancer free".  This past weekend, again out of the blue, said "you got your miracle didn't you?)  I think God is trying to tell me something πŸ™‚   Every day is a blessing and a miracle!

      Wishing everyone clean scans!

      Jeannine

      Jean-9
      Participant

      Thanks Jerry,  I was told the same thing. I always wondered was my lesion so big (6.75 mm) because it was cancerous or was it cancerous because it was so big?  I guess it's one of those questions like which came first the chicken or the egg???

      The world may never know.  I hope you are enjoying your Labor Day weekend!!

Viewing 8 reply threads
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide byΒ MRF posting policies.

Popular Topics