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 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.

Pilot Ipilimumab in Stage IV Melanoma Receiving Palliative Radiation Therapy

Pilot Ipilimumab in Stage IV Melanoma Receiving Palliative Radiation Therapy

Pilot Ipilimumab in Stage IV Melanoma Receiving Palliative Radiation Therapy

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!

I don't think it is unethical to develop drugs and make money – that's my job, too.  What I find troubling is that the public interest is not always best served by the marketing team of PharmaCo.  As an example, why isn't Rituxan in a clinical study for adjuvant therapy for melanoma?  Two independent academic studies indicated that it radically reduced recurrance.  Genentech doesn't see the value although you or I just might like to know if our lives could be improved by using a safe drug that eliminates recurrance.  It is in cases like these that an alternate pathway is needed.  

As an extreme example, let's say I invented a cure for moles on the left cheek.  Clinical studies show it is safe & effective but a marketing survey shows that only 5,000 people have moles on their left cheek that would use this drug.  If your one of the 5,000, you want that drug, but you will never get it because there is no value for a micro market like that.  Those people are SOL.  It goes on all the time.  

You are right about the poor conversion from Phase III to drug…I believe the industry metric right now is about $1.3 billion per approved drug.  Clinical research isn't free…pay now or pay later, but the bill has to be paid.  All I am saying is that many ideas never see the light of day – we don't even know if they will work or not – because the Phase I/II studies don't get funded (Pharma rarely pays for those).   

I do not think that the government should pay for all clinical studies, but they need to support promising drugs over the "valley of death" – the zone where so many drugs die for lack of funding.   I do not object to wisely spent tax dollars and putting up $$  to make it so.  (I do object to waste, but that is another story).   

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.

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.

I don't think it is unethical to develop drugs and make money – that's my job, too.  What I find troubling is that the public interest is not always best served by the marketing team of PharmaCo.  As an example, why isn't Rituxan in a clinical study for adjuvant therapy for melanoma?  Two independent academic studies indicated that it radically reduced recurrance.  Genentech doesn't see the value although you or I just might like to know if our lives could be improved by using a safe drug that eliminates recurrance.  It is in cases like these that an alternate pathway is needed.  

As an extreme example, let's say I invented a cure for moles on the left cheek.  Clinical studies show it is safe & effective but a marketing survey shows that only 5,000 people have moles on their left cheek that would use this drug.  If your one of the 5,000, you want that drug, but you will never get it because there is no value for a micro market like that.  Those people are SOL.  It goes on all the time.  

You are right about the poor conversion from Phase III to drug…I believe the industry metric right now is about $1.3 billion per approved drug.  Clinical research isn't free…pay now or pay later, but the bill has to be paid.  All I am saying is that many ideas never see the light of day – we don't even know if they will work or not – because the Phase I/II studies don't get funded (Pharma rarely pays for those).   

I do not think that the government should pay for all clinical studies, but they need to support promising drugs over the "valley of death" – the zone where so many drugs die for lack of funding.   I do not object to wisely spent tax dollars and putting up $$  to make it so.  (I do object to waste, but that is another story).   

I don't think it is unethical to develop drugs and make money – that's my job, too.  What I find troubling is that the public interest is not always best served by the marketing team of PharmaCo.  As an example, why isn't Rituxan in a clinical study for adjuvant therapy for melanoma?  Two independent academic studies indicated that it radically reduced recurrance.  Genentech doesn't see the value although you or I just might like to know if our lives could be improved by using a safe drug that eliminates recurrance.  It is in cases like these that an alternate pathway is needed.  

As an extreme example, let's say I invented a cure for moles on the left cheek.  Clinical studies show it is safe & effective but a marketing survey shows that only 5,000 people have moles on their left cheek that would use this drug.  If your one of the 5,000, you want that drug, but you will never get it because there is no value for a micro market like that.  Those people are SOL.  It goes on all the time.  

You are right about the poor conversion from Phase III to drug…I believe the industry metric right now is about $1.3 billion per approved drug.  Clinical research isn't free…pay now or pay later, but the bill has to be paid.  All I am saying is that many ideas never see the light of day – we don't even know if they will work or not – because the Phase I/II studies don't get funded (Pharma rarely pays for those).   

I do not think that the government should pay for all clinical studies, but they need to support promising drugs over the "valley of death" – the zone where so many drugs die for lack of funding.   I do not object to wisely spent tax dollars and putting up $$  to make it so.  (I do object to waste, but that is another story).