doro

Hi Dave,

Hopefully your case will be expedited appropriately, since malignant melanoma is on the SSA Compassionate Allowance list (http://www.ssa.gov/compassionateallowances/conditions.htm).

As back up, you might consider contacting one of your federal representatives (U.S. Senator or House Rep) to ask them to follow up on your claim after you have filed it. While they can't force the SSA to take certain action or bend the rules for anyone, a caseworker in a federal representative's office should be able to send out an inquiry to check on the status of your case and make sure it has been appropriately flagged as a Compassionate Allowance case. Sometimes that type of follow up can be helpful — and it's free, unlike a disability lawyer! I know several people who have received help from constituent services staff working for California reps.

Best,

Doro

Hi Dave,

Hopefully your case will be expedited appropriately, since malignant melanoma is on the SSA Compassionate Allowance list (http://www.ssa.gov/compassionateallowances/conditions.htm).

As back up, you might consider contacting one of your federal representatives (U.S. Senator or House Rep) to ask them to follow up on your claim after you have filed it. While they can't force the SSA to take certain action or bend the rules for anyone, a caseworker in a federal representative's office should be able to send out an inquiry to check on the status of your case and make sure it has been appropriately flagged as a Compassionate Allowance case. Sometimes that type of follow up can be helpful — and it's free, unlike a disability lawyer! I know several people who have received help from constituent services staff working for California reps.

Best,

Doro

Hi Dave,

Hopefully your case will be expedited appropriately, since malignant melanoma is on the SSA Compassionate Allowance list (http://www.ssa.gov/compassionateallowances/conditions.htm).

As back up, you might consider contacting one of your federal representatives (U.S. Senator or House Rep) to ask them to follow up on your claim after you have filed it. While they can't force the SSA to take certain action or bend the rules for anyone, a caseworker in a federal representative's office should be able to send out an inquiry to check on the status of your case and make sure it has been appropriately flagged as a Compassionate Allowance case. Sometimes that type of follow up can be helpful — and it's free, unlike a disability lawyer! I know several people who have received help from constituent services staff working for California reps.

Best,

Doro

Hi Socks,

Glad you are posting here. While this type of news may not be the best, hopefully you are feeling good about having a plan in place and to be moving forward/taking action!

It sounds like the oncologist's office is moving in the right direction, but you may want to push for a brain MRI and PET/CT. Is there another facility you might be able to go to if the regular office is full? I'm a bit surprised those scans haven't been done already to confirm that the rest of your body is clear. Like someone else mentioned, if there is spread elsewhere beyond the lymph nodes, systemic treatment is a better option because it will go after all the cancer cells while surgery will just take out some (and you typically can't start systemic treatment, like Zelboraf or Yervoy, until you have recovered from surgery. Just a good thing to rule out.

My dad was diagnosed over a year ago with a scalp primary and also had a dissection that sounds similar to what your onc is planning so the notes on his case/in my profile here might be of interest to you.

Keep us posted! Thinking good thoughts your way!

Doro

Hi Socks,

Glad you are posting here. While this type of news may not be the best, hopefully you are feeling good about having a plan in place and to be moving forward/taking action!

It sounds like the oncologist's office is moving in the right direction, but you may want to push for a brain MRI and PET/CT. Is there another facility you might be able to go to if the regular office is full? I'm a bit surprised those scans haven't been done already to confirm that the rest of your body is clear. Like someone else mentioned, if there is spread elsewhere beyond the lymph nodes, systemic treatment is a better option because it will go after all the cancer cells while surgery will just take out some (and you typically can't start systemic treatment, like Zelboraf or Yervoy, until you have recovered from surgery. Just a good thing to rule out.

My dad was diagnosed over a year ago with a scalp primary and also had a dissection that sounds similar to what your onc is planning so the notes on his case/in my profile here might be of interest to you.

Keep us posted! Thinking good thoughts your way!

Doro

Hi Socks,

Glad you are posting here. While this type of news may not be the best, hopefully you are feeling good about having a plan in place and to be moving forward/taking action!

It sounds like the oncologist's office is moving in the right direction, but you may want to push for a brain MRI and PET/CT. Is there another facility you might be able to go to if the regular office is full? I'm a bit surprised those scans haven't been done already to confirm that the rest of your body is clear. Like someone else mentioned, if there is spread elsewhere beyond the lymph nodes, systemic treatment is a better option because it will go after all the cancer cells while surgery will just take out some (and you typically can't start systemic treatment, like Zelboraf or Yervoy, until you have recovered from surgery. Just a good thing to rule out.

My dad was diagnosed over a year ago with a scalp primary and also had a dissection that sounds similar to what your onc is planning so the notes on his case/in my profile here might be of interest to you.

Keep us posted! Thinking good thoughts your way!

Doro

Hi Natalie,

There was a somewhat similar thread (about switching to the combo rather than Tafinlar alone) recently that might be helpful: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/switching-zelboraf-brafmek

Best,

Doro

Hi Natalie,

There was a somewhat similar thread (about switching to the combo rather than Tafinlar alone) recently that might be helpful: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/switching-zelboraf-brafmek

Best,

Doro

Hi Natalie,

There was a somewhat similar thread (about switching to the combo rather than Tafinlar alone) recently that might be helpful: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/switching-zelboraf-brafmek

Best,

Doro

Hi Michele,

I also recommend Dr. Daud at UCSF. He has been treating my father for about a year. We also met with his colleague, Dr. Algazi, once when Dr. Daud was travelling, and he seemed very knowledgeable and thoughtful.  We got a second opinion from Dr. Minor, who works with a team that has a strong reputation for melanoma treatment. We decided to go with Dr. Daud, in part because his approach seemed more progressive/he was more open to a variety of treatment options.

Good luck!

Doro

Hi Michele,

I also recommend Dr. Daud at UCSF. He has been treating my father for about a year. We also met with his colleague, Dr. Algazi, once when Dr. Daud was travelling, and he seemed very knowledgeable and thoughtful.  We got a second opinion from Dr. Minor, who works with a team that has a strong reputation for melanoma treatment. We decided to go with Dr. Daud, in part because his approach seemed more progressive/he was more open to a variety of treatment options.

Good luck!

Doro

Hi Michele,

I also recommend Dr. Daud at UCSF. He has been treating my father for about a year. We also met with his colleague, Dr. Algazi, once when Dr. Daud was travelling, and he seemed very knowledgeable and thoughtful.  We got a second opinion from Dr. Minor, who works with a team that has a strong reputation for melanoma treatment. We decided to go with Dr. Daud, in part because his approach seemed more progressive/he was more open to a variety of treatment options.

Good luck!

Doro

My father is treated by Dr. Daud at UCSF, and he is great. He active in research and seems quite on top of developments in the field. We met once with Dr. Algazi, who also seemed like a competent and caring oncologist. Dr. Reddy at Stanford does some research (when we met with him a year or so ago, he was working on an ipi trial, I think).

Good luck!

My father is treated by Dr. Daud at UCSF, and he is great. He active in research and seems quite on top of developments in the field. We met once with Dr. Algazi, who also seemed like a competent and caring oncologist. Dr. Reddy at Stanford does some research (when we met with him a year or so ago, he was working on an ipi trial, I think).

Good luck!

My father is treated by Dr. Daud at UCSF, and he is great. He active in research and seems quite on top of developments in the field. We met once with Dr. Algazi, who also seemed like a competent and caring oncologist. Dr. Reddy at Stanford does some research (when we met with him a year or so ago, he was working on an ipi trial, I think).

Good luck!