MD Anderson???

Jen, Adriana is doing well overall at this time. Her double vision is largely resolved at this time. She is experiencing some swelling (had to re-order her wedding ring as it wouldn't fit) and is having some stiffness and muscle pain, unfortunately we haven't had the opportunity to get her skiing yet. Over all minor symptoms compared to where she was during September/October. And certainly minor to some of the suffering and pain some folks are having and the loss of loved ones during these past holidays.  Thanks for asking in the previous thread.

Please take my comments here only as our position on all of this and that Adriana was only diagnosed with LMD in October (although it is theorized that she may have had LMD as far back as Feb. 2015) yet she is still alive and doing well thankfully (I don't think the Dr. thought she would still be here.) Although we have done our homework to the best extent possible we actually feel like we  know very little compared to the vast knowledge on this board. LMD for all types of cancer is rare and and there has been limited research/trials with most directed at breast and lung cancer. Given that melanoma is chemo-resistant,  successful treatments have been few. Although we try and remain optimistic we also accept the reality of the situation. Since the time that Adriana moved to stage 4 we have accepted that Melanoma would likely take her life at some point and now with the LMD diagnosis and the limited successful available treatment we accept that this likelyhood will come sooner than later. Please don't take this to mean that she has given up, only that we know that we can't change the diagnosis or where science currently is. We find it best to try and spend our time managing the symptoms as they occur and otherwise enjoying our time and making memories. We certainly have spent our time crying, scared and depressed but find it counter productive. We can't predict the future or change the past, we can only prepare and keep moving forward.

I recommend to anyone at any stage to please try and stress less as you can't change your diagnosis. Do your homework and accept the treatments that are available. Please stress less, and live more. 

What I'm trying to say here isn't coming out very well.

Please Please Please don't let yourself put the cart before the horse. Your dad doesn't sound like he has any neurologic deficits affecting his daily life at this time, and is in fact doing well. Awesome. Please continue to do research to be prepared as you did earlier so that you can be prepared for testing procedures and followup.  Don't give him LMD before he is diagnosed with it. Remember folks here are not dying from cancer, they are living with it.

I know it is difficult but please be mindful of  dad (and mom's) decisions . I understand that Dr. Margolin can be "stern" but we also found her to be one of the best and we were sorry to loose her. I would find someone with knowledge of advanced Melanoma specifically as well as a neuro-oncologist with specific knowledge of melanoma if possible. Unfortunately we found that Adriana's neuro-oncologist (highly respected and head of the department), although he had run trials on intrathecal chemotherapy for breast and lung cancer,  apparently didn't accept that it was of little use for melanoma, which led to her having an largely unnecessary surgery and treatment. 

As far as I know, you are correct about Glitza at MDA. Although a second opinion there surely couldn't be a bad thing, I personally would wait until your father has been diagnosed with LMD or at least had some tests run. Remember the radiologist has only mentioned LMD as one possibility and that needs to be filtered by your dad's other tests and symptoms by his Dr. 

Whether he seeks more info at MDA  should also be weighed with the consideration, if they recommend for him to come to MDA for treatment, is that something he is prepared to do. We infact have not sought a second opinion as of yet as Adriana is not prepared to move to Texas (essentially required) for the rather difficult IT-IL2 treatments, that although have worked for some folks in giving them more time, most certainly does not work for everyone (as is true with any of these treatments unfortunately.) I also understand that not all of the Dr's at MDA are on the same page concerning the IT-IL2 treatment. If he is not prepared to make such a move then I would question the benefit of such a trip. 

I wish I could push research faster for a cure for the horrible diseases we have in this world. 

Sorry for my rambling.

I hope any of this has been helpful

Rob

Jen, Adriana is doing well overall at this time. Her double vision is largely resolved at this time. She is experiencing some swelling (had to re-order her wedding ring as it wouldn't fit) and is having some stiffness and muscle pain, unfortunately we haven't had the opportunity to get her skiing yet. Over all minor symptoms compared to where she was during September/October. And certainly minor to some of the suffering and pain some folks are having and the loss of loved ones during these past holidays.  Thanks for asking in the previous thread.

Please take my comments here only as our position on all of this and that Adriana was only diagnosed with LMD in October (although it is theorized that she may have had LMD as far back as Feb. 2015) yet she is still alive and doing well thankfully (I don't think the Dr. thought she would still be here.) Although we have done our homework to the best extent possible we actually feel like we  know very little compared to the vast knowledge on this board. LMD for all types of cancer is rare and and there has been limited research/trials with most directed at breast and lung cancer. Given that melanoma is chemo-resistant,  successful treatments have been few. Although we try and remain optimistic we also accept the reality of the situation. Since the time that Adriana moved to stage 4 we have accepted that Melanoma would likely take her life at some point and now with the LMD diagnosis and the limited successful available treatment we accept that this likelyhood will come sooner than later. Please don't take this to mean that she has given up, only that we know that we can't change the diagnosis or where science currently is. We find it best to try and spend our time managing the symptoms as they occur and otherwise enjoying our time and making memories. We certainly have spent our time crying, scared and depressed but find it counter productive. We can't predict the future or change the past, we can only prepare and keep moving forward.

I recommend to anyone at any stage to please try and stress less as you can't change your diagnosis. Do your homework and accept the treatments that are available. Please stress less, and live more. 

What I'm trying to say here isn't coming out very well.

Please Please Please don't let yourself put the cart before the horse. Your dad doesn't sound like he has any neurologic deficits affecting his daily life at this time, and is in fact doing well. Awesome. Please continue to do research to be prepared as you did earlier so that you can be prepared for testing procedures and followup.  Don't give him LMD before he is diagnosed with it. Remember folks here are not dying from cancer, they are living with it.

I know it is difficult but please be mindful of  dad (and mom's) decisions . I understand that Dr. Margolin can be "stern" but we also found her to be one of the best and we were sorry to loose her. I would find someone with knowledge of advanced Melanoma specifically as well as a neuro-oncologist with specific knowledge of melanoma if possible. Unfortunately we found that Adriana's neuro-oncologist (highly respected and head of the department), although he had run trials on intrathecal chemotherapy for breast and lung cancer,  apparently didn't accept that it was of little use for melanoma, which led to her having an largely unnecessary surgery and treatment. 

As far as I know, you are correct about Glitza at MDA. Although a second opinion there surely couldn't be a bad thing, I personally would wait until your father has been diagnosed with LMD or at least had some tests run. Remember the radiologist has only mentioned LMD as one possibility and that needs to be filtered by your dad's other tests and symptoms by his Dr. 

Whether he seeks more info at MDA  should also be weighed with the consideration, if they recommend for him to come to MDA for treatment, is that something he is prepared to do. We infact have not sought a second opinion as of yet as Adriana is not prepared to move to Texas (essentially required) for the rather difficult IT-IL2 treatments, that although have worked for some folks in giving them more time, most certainly does not work for everyone (as is true with any of these treatments unfortunately.) I also understand that not all of the Dr's at MDA are on the same page concerning the IT-IL2 treatment. If he is not prepared to make such a move then I would question the benefit of such a trip. 

I wish I could push research faster for a cure for the horrible diseases we have in this world. 

Sorry for my rambling.

I hope any of this has been helpful

Rob

Jen, Adriana is doing well overall at this time. Her double vision is largely resolved at this time. She is experiencing some swelling (had to re-order her wedding ring as it wouldn't fit) and is having some stiffness and muscle pain, unfortunately we haven't had the opportunity to get her skiing yet. Over all minor symptoms compared to where she was during September/October. And certainly minor to some of the suffering and pain some folks are having and the loss of loved ones during these past holidays.  Thanks for asking in the previous thread.

Please take my comments here only as our position on all of this and that Adriana was only diagnosed with LMD in October (although it is theorized that she may have had LMD as far back as Feb. 2015) yet she is still alive and doing well thankfully (I don't think the Dr. thought she would still be here.) Although we have done our homework to the best extent possible we actually feel like we  know very little compared to the vast knowledge on this board. LMD for all types of cancer is rare and and there has been limited research/trials with most directed at breast and lung cancer. Given that melanoma is chemo-resistant,  successful treatments have been few. Although we try and remain optimistic we also accept the reality of the situation. Since the time that Adriana moved to stage 4 we have accepted that Melanoma would likely take her life at some point and now with the LMD diagnosis and the limited successful available treatment we accept that this likelyhood will come sooner than later. Please don't take this to mean that she has given up, only that we know that we can't change the diagnosis or where science currently is. We find it best to try and spend our time managing the symptoms as they occur and otherwise enjoying our time and making memories. We certainly have spent our time crying, scared and depressed but find it counter productive. We can't predict the future or change the past, we can only prepare and keep moving forward.

I recommend to anyone at any stage to please try and stress less as you can't change your diagnosis. Do your homework and accept the treatments that are available. Please stress less, and live more. 

What I'm trying to say here isn't coming out very well.

Please Please Please don't let yourself put the cart before the horse. Your dad doesn't sound like he has any neurologic deficits affecting his daily life at this time, and is in fact doing well. Awesome. Please continue to do research to be prepared as you did earlier so that you can be prepared for testing procedures and followup.  Don't give him LMD before he is diagnosed with it. Remember folks here are not dying from cancer, they are living with it.

I know it is difficult but please be mindful of  dad (and mom's) decisions . I understand that Dr. Margolin can be "stern" but we also found her to be one of the best and we were sorry to loose her. I would find someone with knowledge of advanced Melanoma specifically as well as a neuro-oncologist with specific knowledge of melanoma if possible. Unfortunately we found that Adriana's neuro-oncologist (highly respected and head of the department), although he had run trials on intrathecal chemotherapy for breast and lung cancer,  apparently didn't accept that it was of little use for melanoma, which led to her having an largely unnecessary surgery and treatment. 

As far as I know, you are correct about Glitza at MDA. Although a second opinion there surely couldn't be a bad thing, I personally would wait until your father has been diagnosed with LMD or at least had some tests run. Remember the radiologist has only mentioned LMD as one possibility and that needs to be filtered by your dad's other tests and symptoms by his Dr. 

Whether he seeks more info at MDA  should also be weighed with the consideration, if they recommend for him to come to MDA for treatment, is that something he is prepared to do. We infact have not sought a second opinion as of yet as Adriana is not prepared to move to Texas (essentially required) for the rather difficult IT-IL2 treatments, that although have worked for some folks in giving them more time, most certainly does not work for everyone (as is true with any of these treatments unfortunately.) I also understand that not all of the Dr's at MDA are on the same page concerning the IT-IL2 treatment. If he is not prepared to make such a move then I would question the benefit of such a trip. 

I wish I could push research faster for a cure for the horrible diseases we have in this world. 

Sorry for my rambling.

I hope any of this has been helpful

Rob

Hi Jen,

I think Rob has given well considered food for thought about the various considerations you may need to balance as the information about the extent of your dads disease becomes clearer.

Just a quick question- if the current onc does consult  Margolin- could you get Margolin's advice/take on the next steps following the recent scan that hinted at possible LM disease ? Might be reassuring to get that- without your Mum and Dad having to lose contact with a doc they like . 

I don't know how much travelling is involved- but my journey to the specialist hospital takes just under 2 hrs on average and it can be very tiring especially when nausea etc are part of the mix…but  we make it happen.

Hope you can navigate a pathway forward that all of you think is appropriate.

Best wishes

Deb

Hi Jen,

I think Rob has given well considered food for thought about the various considerations you may need to balance as the information about the extent of your dads disease becomes clearer.

Just a quick question- if the current onc does consult  Margolin- could you get Margolin's advice/take on the next steps following the recent scan that hinted at possible LM disease ? Might be reassuring to get that- without your Mum and Dad having to lose contact with a doc they like . 

I don't know how much travelling is involved- but my journey to the specialist hospital takes just under 2 hrs on average and it can be very tiring especially when nausea etc are part of the mix…but  we make it happen.

Hope you can navigate a pathway forward that all of you think is appropriate.

Best wishes

Deb

Hi Jen,

I think Rob has given well considered food for thought about the various considerations you may need to balance as the information about the extent of your dads disease becomes clearer.

Just a quick question- if the current onc does consult  Margolin- could you get Margolin's advice/take on the next steps following the recent scan that hinted at possible LM disease ? Might be reassuring to get that- without your Mum and Dad having to lose contact with a doc they like . 

I don't know how much travelling is involved- but my journey to the specialist hospital takes just under 2 hrs on average and it can be very tiring especially when nausea etc are part of the mix…but  we make it happen.

Hope you can navigate a pathway forward that all of you think is appropriate.

Best wishes

Deb

Hi Jen,

I used to have Dr. Margolin as well, before she moved from the SCCA in Seattle to Stanford. She is very well respected and knows her stuff. She was one of the kick-off presenters at ASCO a few years ago.

My background is STEM (science, technology, engineering and math), so I appreciated the detached, logical conversations we had. She does not sugar coat and tells it like it is. So yeah, maybe not the best bedside manner, but personally I missed her when she left.

I am wishing the best for you and your dad and family.

– Paul

Hi Jen,

I used to have Dr. Margolin as well, before she moved from the SCCA in Seattle to Stanford. She is very well respected and knows her stuff. She was one of the kick-off presenters at ASCO a few years ago.

My background is STEM (science, technology, engineering and math), so I appreciated the detached, logical conversations we had. She does not sugar coat and tells it like it is. So yeah, maybe not the best bedside manner, but personally I missed her when she left.

I am wishing the best for you and your dad and family.

– Paul

Hi Jen,

I used to have Dr. Margolin as well, before she moved from the SCCA in Seattle to Stanford. She is very well respected and knows her stuff. She was one of the kick-off presenters at ASCO a few years ago.

My background is STEM (science, technology, engineering and math), so I appreciated the detached, logical conversations we had. She does not sugar coat and tells it like it is. So yeah, maybe not the best bedside manner, but personally I missed her when she left.

I am wishing the best for you and your dad and family.

– Paul