Mew Stage IV

There are charities that help with travel and some hospitals partner with airlines. Tis website has a treatment center finder that will show you Melanoma Centers of Excellence.

Also use clinicaltrials.gov to find locations for trials, to see what they have in St Louis. I go to Vandy and they have lots of trials open including anti pd1 but you have to have existing measurable disease for most of them so if you are stage 4 resected to NED there will be less out there. Good luck on your surgery.

There are charities that help with travel and some hospitals partner with airlines. Tis website has a treatment center finder that will show you Melanoma Centers of Excellence.

Also use clinicaltrials.gov to find locations for trials, to see what they have in St Louis. I go to Vandy and they have lots of trials open including anti pd1 but you have to have existing measurable disease for most of them so if you are stage 4 resected to NED there will be less out there. Good luck on your surgery.

There are charities that help with travel and some hospitals partner with airlines. Tis website has a treatment center finder that will show you Melanoma Centers of Excellence.

Also use clinicaltrials.gov to find locations for trials, to see what they have in St Louis. I go to Vandy and they have lots of trials open including anti pd1 but you have to have existing measurable disease for most of them so if you are stage 4 resected to NED there will be less out there. Good luck on your surgery.

If they take your lung nodule this week and you revert to NED status, getting therapy is maddening.  Aside from interferon, there is precious little available as adjuvant therapy.  I went into a low dose Ipi study but was relegated to the control arm of 4 weeks of interferon.  I don't know if that did anything.

You may want to consider getting your tissue from your lung surgery into a xenographic mouse model (see Champions at Johns Hopkins).  They can establish your cells as a permanent cell line for future testing.   Also, the best therapy with a single lesion is resection.    A recent publication showed it gave the best chances for long term disease free survival.

Good luck!

If they take your lung nodule this week and you revert to NED status, getting therapy is maddening.  Aside from interferon, there is precious little available as adjuvant therapy.  I went into a low dose Ipi study but was relegated to the control arm of 4 weeks of interferon.  I don't know if that did anything.

You may want to consider getting your tissue from your lung surgery into a xenographic mouse model (see Champions at Johns Hopkins).  They can establish your cells as a permanent cell line for future testing.   Also, the best therapy with a single lesion is resection.    A recent publication showed it gave the best chances for long term disease free survival.

Good luck!

If they take your lung nodule this week and you revert to NED status, getting therapy is maddening.  Aside from interferon, there is precious little available as adjuvant therapy.  I went into a low dose Ipi study but was relegated to the control arm of 4 weeks of interferon.  I don't know if that did anything.

You may want to consider getting your tissue from your lung surgery into a xenographic mouse model (see Champions at Johns Hopkins).  They can establish your cells as a permanent cell line for future testing.   Also, the best therapy with a single lesion is resection.    A recent publication showed it gave the best chances for long term disease free survival.

Good luck!

Ask to have that new met retested for BRAF mutation.  Not always but it has happened that new mets will be different mutations in the same person. 

Ask to have that new met retested for BRAF mutation.  Not always but it has happened that new mets will be different mutations in the same person. 

Ask to have that new met retested for BRAF mutation.  Not always but it has happened that new mets will be different mutations in the same person. 

They have also improved the testing and sometimes find BRAF was in the tissue that previously tested negative.  Also negative means not positive for the particular mutation tested for.  There are more than one mBRAF mutation possible.

I strongly encourage you to see Dr. Linette.  He's the best melanoma specialist in the region and at the top of his game. A number of trials are available in St. Louis.  I've been his patient for six years.

I strongly encourage you to see Dr. Linette.  He's the best melanoma specialist in the region and at the top of his game. A number of trials are available in St. Louis.  I've been his patient for six years.

I strongly encourage you to see Dr. Linette.  He's the best melanoma specialist in the region and at the top of his game. A number of trials are available in St. Louis.  I've been his patient for six years.

Hi Peabody…curious about what the mouse model process you are talking about. Thanks

Intermittent dosing delays the development of vemurafenib (Zelboraf) resistence in mice. Here is a link to the original ariticle:

http://www.nature.com/nature/journal/v494/n7436/full/nature11814.html

Pretty sure that is not what he was talking about…thanks

I was referring to Champions Oncology – see http://www.championsoncology.com – an company based on (in part) work by Dr. David Sidransky at Johns Hopkins.   They have my tumor in an established cell line that they grew up in a xenographic mouse.  So far, we have only tried a couple of drugs against my cells, but depending on who my disease goes, I imagine I will try others.

It is a little expensive, but it is on the front edge of cancer research.  If you want to speak to someone with a lot more knowledge on the subject let me know and I will connect you.

Thanks….

Peabody- I'm so intrigued that you went the route of Champions.  I am also a scientist (biologist)  and have been following Champions for a few months now. I have met with them for professional reasons, and have researched them as a potential strategy for my husband.  I did notice that they had never actually treated a Melanoma patient and was wondering if this was due to the fact that they couldn't evaluate immunotherapies in their models.  Do you mind if I ask you a few questions?

*  I see you are at NIH.  Were they able to use the tumor isolated at NIH? My husband was set to enroll in a TIL trial when we learned the disease had spread to his brain.  I believe NIH may have his tumor and have considered asking them to send it over to Champions? Is that at all feasible?

* how long did it take for you to get results, once the tumor was isolated? Do you pay them by the # of drugs they test? Did you have to pay out of pocket for the surgery?

*did you have trouble getting your docs to go along with Champions? In personal conversations w/them, I recall them saying that it was challenging to get doctors to agree to prescribing the combinations that they ultimately recommend.

Thanks!

Donna

Hi Donna,

I was aware of Champions for quite some time prior to discovering I had a melanoma.  I had them take tissue from my primary tumor (my left big toe) and that is the basis for my cell line.  Since my melanoma was unpigmented and acral, I argued it was an unusual opportunity for them and was able to bring down the cost a bit.  I can't disclose the number but it was not unreasonable.

For their process to work, they need to have a sample collected during surgery – it is live tissue pathology.  It don't think it would be possible to get the tumor to grow from a frozen tissue cube.

It took about 2 months to find out that the cells were established in the mouse.  We then challenged them with one experimental drug and DTIC as a control.  My cells were highly sensitive to DTIC, which I guess gives me an option down the road should I need it. (also, the cost was not that high…worth the money).

Regarding doctors and getting them to think outside the box – well, that is a challenge.  I had convinced my oncologist to give me Rituxan as an adjuvant therapy provided my tumor had CD20+ cells.  The stain run at the hospital did not detect the cells, so my doctor backed off.  I should have sent them to UPenn and had Herlyn run them himself, but it is what it is.  I still would have taken it, but then I had a couple of lung mets pop up, so I changed plans and went with TIL therapy. I have a great oncologist with a very open mind.  We have discussed lots of options and she has been highly supportive.  I think the message that has to be delivered to the doctor is that it is your life and your situation.  They should look at been the "offensive coordinator" rather then the head coach, if you will pardon the sports analogy.  Unfortunately, you have to be your own best advocate.

One other area which is worth exploring is the venue of chemosensitivity profiling.  http://www.diatech-oncology.com/   I have first hand knowledge of this technology and I think it is highly promising.  It was originally designed for liquid tumors but it looks like they are moving more into solid tumors.  You may want to check into that as well.  I had a friend whose wife had a very aggressive type of breast cancer.  They went with a chemo profiling group in California that recommended a non-standard chemo agent….it kept her alive for 15 years.  Again, you have to be the "head coach."  I think it is OK to lead your own therapy.

I saw Dr Linette for treatment with ipi, and I absolutely highly recommend him. He is brilliant, and kind… he takes all the time you need, and also has many trials going on. I only left there because I had to seek a trial to get into, and that led me to Dr Sosman in Nashville, who I am also very thankful to be seeing- great Dr, and very compassionate.

DEFINITELY highly recommend seeing a mel specialist. To me, it is a must to insure getting the best care and most up-to-date treatments.

Tina

I saw Dr Linette for treatment with ipi, and I absolutely highly recommend him. He is brilliant, and kind… he takes all the time you need, and also has many trials going on. I only left there because I had to seek a trial to get into, and that led me to Dr Sosman in Nashville, who I am also very thankful to be seeing- great Dr, and very compassionate.

DEFINITELY highly recommend seeing a mel specialist. To me, it is a must to insure getting the best care and most up-to-date treatments.

Tina

I saw Dr Linette for treatment with ipi, and I absolutely highly recommend him. He is brilliant, and kind… he takes all the time you need, and also has many trials going on. I only left there because I had to seek a trial to get into, and that led me to Dr Sosman in Nashville, who I am also very thankful to be seeing- great Dr, and very compassionate.

DEFINITELY highly recommend seeing a mel specialist. To me, it is a must to insure getting the best care and most up-to-date treatments.

Tina

They have also improved the testing and sometimes find BRAF was in the tissue that previously tested negative.  Also negative means not positive for the particular mutation tested for.  There are more than one mBRAF mutation possible.

They have also improved the testing and sometimes find BRAF was in the tissue that previously tested negative.  Also negative means not positive for the particular mutation tested for.  There are more than one mBRAF mutation possible.

Intermittent dosing delays the development of vemurafenib (Zelboraf) resistence in mice. Here is a link to the original ariticle:

http://www.nature.com/nature/journal/v494/n7436/full/nature11814.html

Intermittent dosing delays the development of vemurafenib (Zelboraf) resistence in mice. Here is a link to the original ariticle:

http://www.nature.com/nature/journal/v494/n7436/full/nature11814.html

I was referring to Champions Oncology – see http://www.championsoncology.com – an company based on (in part) work by Dr. David Sidransky at Johns Hopkins.   They have my tumor in an established cell line that they grew up in a xenographic mouse.  So far, we have only tried a couple of drugs against my cells, but depending on who my disease goes, I imagine I will try others.

It is a little expensive, but it is on the front edge of cancer research.  If you want to speak to someone with a lot more knowledge on the subject let me know and I will connect you.

I was referring to Champions Oncology – see http://www.championsoncology.com – an company based on (in part) work by Dr. David Sidransky at Johns Hopkins.   They have my tumor in an established cell line that they grew up in a xenographic mouse.  So far, we have only tried a couple of drugs against my cells, but depending on who my disease goes, I imagine I will try others.

It is a little expensive, but it is on the front edge of cancer research.  If you want to speak to someone with a lot more knowledge on the subject let me know and I will connect you.

Pretty sure that is not what he was talking about…thanks

Pretty sure that is not what he was talking about…thanks

Thanks….

Thanks….

Peabody- I'm so intrigued that you went the route of Champions.  I am also a scientist (biologist)  and have been following Champions for a few months now. I have met with them for professional reasons, and have researched them as a potential strategy for my husband.  I did notice that they had never actually treated a Melanoma patient and was wondering if this was due to the fact that they couldn't evaluate immunotherapies in their models.  Do you mind if I ask you a few questions?

*  I see you are at NIH.  Were they able to use the tumor isolated at NIH? My husband was set to enroll in a TIL trial when we learned the disease had spread to his brain.  I believe NIH may have his tumor and have considered asking them to send it over to Champions? Is that at all feasible?

* how long did it take for you to get results, once the tumor was isolated? Do you pay them by the # of drugs they test? Did you have to pay out of pocket for the surgery?

*did you have trouble getting your docs to go along with Champions? In personal conversations w/them, I recall them saying that it was challenging to get doctors to agree to prescribing the combinations that they ultimately recommend.

Thanks!

Donna

Peabody- I'm so intrigued that you went the route of Champions.  I am also a scientist (biologist)  and have been following Champions for a few months now. I have met with them for professional reasons, and have researched them as a potential strategy for my husband.  I did notice that they had never actually treated a Melanoma patient and was wondering if this was due to the fact that they couldn't evaluate immunotherapies in their models.  Do you mind if I ask you a few questions?

*  I see you are at NIH.  Were they able to use the tumor isolated at NIH? My husband was set to enroll in a TIL trial when we learned the disease had spread to his brain.  I believe NIH may have his tumor and have considered asking them to send it over to Champions? Is that at all feasible?

* how long did it take for you to get results, once the tumor was isolated? Do you pay them by the # of drugs they test? Did you have to pay out of pocket for the surgery?

*did you have trouble getting your docs to go along with Champions? In personal conversations w/them, I recall them saying that it was challenging to get doctors to agree to prescribing the combinations that they ultimately recommend.

Thanks!

Donna

Hi Donna,

I was aware of Champions for quite some time prior to discovering I had a melanoma.  I had them take tissue from my primary tumor (my left big toe) and that is the basis for my cell line.  Since my melanoma was unpigmented and acral, I argued it was an unusual opportunity for them and was able to bring down the cost a bit.  I can't disclose the number but it was not unreasonable.

For their process to work, they need to have a sample collected during surgery – it is live tissue pathology.  It don't think it would be possible to get the tumor to grow from a frozen tissue cube.

It took about 2 months to find out that the cells were established in the mouse.  We then challenged them with one experimental drug and DTIC as a control.  My cells were highly sensitive to DTIC, which I guess gives me an option down the road should I need it. (also, the cost was not that high…worth the money).

Regarding doctors and getting them to think outside the box – well, that is a challenge.  I had convinced my oncologist to give me Rituxan as an adjuvant therapy provided my tumor had CD20+ cells.  The stain run at the hospital did not detect the cells, so my doctor backed off.  I should have sent them to UPenn and had Herlyn run them himself, but it is what it is.  I still would have taken it, but then I had a couple of lung mets pop up, so I changed plans and went with TIL therapy. I have a great oncologist with a very open mind.  We have discussed lots of options and she has been highly supportive.  I think the message that has to be delivered to the doctor is that it is your life and your situation.  They should look at been the "offensive coordinator" rather then the head coach, if you will pardon the sports analogy.  Unfortunately, you have to be your own best advocate.

One other area which is worth exploring is the venue of chemosensitivity profiling.  http://www.diatech-oncology.com/   I have first hand knowledge of this technology and I think it is highly promising.  It was originally designed for liquid tumors but it looks like they are moving more into solid tumors.  You may want to check into that as well.  I had a friend whose wife had a very aggressive type of breast cancer.  They went with a chemo profiling group in California that recommended a non-standard chemo agent….it kept her alive for 15 years.  Again, you have to be the "head coach."  I think it is OK to lead your own therapy.

Hi Donna,

I was aware of Champions for quite some time prior to discovering I had a melanoma.  I had them take tissue from my primary tumor (my left big toe) and that is the basis for my cell line.  Since my melanoma was unpigmented and acral, I argued it was an unusual opportunity for them and was able to bring down the cost a bit.  I can't disclose the number but it was not unreasonable.

For their process to work, they need to have a sample collected during surgery – it is live tissue pathology.  It don't think it would be possible to get the tumor to grow from a frozen tissue cube.

It took about 2 months to find out that the cells were established in the mouse.  We then challenged them with one experimental drug and DTIC as a control.  My cells were highly sensitive to DTIC, which I guess gives me an option down the road should I need it. (also, the cost was not that high…worth the money).

Regarding doctors and getting them to think outside the box – well, that is a challenge.  I had convinced my oncologist to give me Rituxan as an adjuvant therapy provided my tumor had CD20+ cells.  The stain run at the hospital did not detect the cells, so my doctor backed off.  I should have sent them to UPenn and had Herlyn run them himself, but it is what it is.  I still would have taken it, but then I had a couple of lung mets pop up, so I changed plans and went with TIL therapy. I have a great oncologist with a very open mind.  We have discussed lots of options and she has been highly supportive.  I think the message that has to be delivered to the doctor is that it is your life and your situation.  They should look at been the "offensive coordinator" rather then the head coach, if you will pardon the sports analogy.  Unfortunately, you have to be your own best advocate.

One other area which is worth exploring is the venue of chemosensitivity profiling.  http://www.diatech-oncology.com/   I have first hand knowledge of this technology and I think it is highly promising.  It was originally designed for liquid tumors but it looks like they are moving more into solid tumors.  You may want to check into that as well.  I had a friend whose wife had a very aggressive type of breast cancer.  They went with a chemo profiling group in California that recommended a non-standard chemo agent….it kept her alive for 15 years.  Again, you have to be the "head coach."  I think it is OK to lead your own therapy.