dvd

Not to disparage the author's study, but this should be taken for what it is – a retrospective, self-reported data collection. Although studies like this have a place in the scientific literature, they are not the strongest level of evidence upon which to base conclusions. In fact the conclusions in the study are not the same as those reported in the article. There is no statement about causative relationships – only that there is an association between the alcohol intake and the reporting of melanoma findings. It is a bit of a stretch to state that drinking alcohol causes melanoma…

DVD

Not to disparage the author's study, but this should be taken for what it is – a retrospective, self-reported data collection. Although studies like this have a place in the scientific literature, they are not the strongest level of evidence upon which to base conclusions. In fact the conclusions in the study are not the same as those reported in the article. There is no statement about causative relationships – only that there is an association between the alcohol intake and the reporting of melanoma findings. It is a bit of a stretch to state that drinking alcohol causes melanoma…

DVD

Not to disparage the author's study, but this should be taken for what it is – a retrospective, self-reported data collection. Although studies like this have a place in the scientific literature, they are not the strongest level of evidence upon which to base conclusions. In fact the conclusions in the study are not the same as those reported in the article. There is no statement about causative relationships – only that there is an association between the alcohol intake and the reporting of melanoma findings. It is a bit of a stretch to state that drinking alcohol causes melanoma…

DVD

Paul –

My primary was also on my scalp (0.4mm depth, non-ulcerated, excised with clear margins) and as the beast was taking over my body 6 years later I also had several small SubQ lesions pop up on my head. All were non-pigmented and looked kind of like a benign pimple. Like yours, some were mildly inflamed and tender, others weren't. In retrospect, one small one had been there for years, but not recognized by either me or my Derm as a met.

Since they became so obvious to me, it was very interesting to follow their demise as I responded in the combo trial. By the second infusion they were soft and shrinking, by the third infusion completely gone with no residual.

I had had a good-sized (1cm X 2cm) tumor recurrence in the incision line from my parotidectomy which was excised and used for tumor markers, so did not need to have any of my scalp lesions biopsied.

January will be three years since the combo trial started for me — still NED…

DVD

Paul –

My primary was also on my scalp (0.4mm depth, non-ulcerated, excised with clear margins) and as the beast was taking over my body 6 years later I also had several small SubQ lesions pop up on my head. All were non-pigmented and looked kind of like a benign pimple. Like yours, some were mildly inflamed and tender, others weren't. In retrospect, one small one had been there for years, but not recognized by either me or my Derm as a met.

Since they became so obvious to me, it was very interesting to follow their demise as I responded in the combo trial. By the second infusion they were soft and shrinking, by the third infusion completely gone with no residual.

I had had a good-sized (1cm X 2cm) tumor recurrence in the incision line from my parotidectomy which was excised and used for tumor markers, so did not need to have any of my scalp lesions biopsied.

January will be three years since the combo trial started for me — still NED…

DVD

Paul –

My primary was also on my scalp (0.4mm depth, non-ulcerated, excised with clear margins) and as the beast was taking over my body 6 years later I also had several small SubQ lesions pop up on my head. All were non-pigmented and looked kind of like a benign pimple. Like yours, some were mildly inflamed and tender, others weren't. In retrospect, one small one had been there for years, but not recognized by either me or my Derm as a met.

Since they became so obvious to me, it was very interesting to follow their demise as I responded in the combo trial. By the second infusion they were soft and shrinking, by the third infusion completely gone with no residual.

I had had a good-sized (1cm X 2cm) tumor recurrence in the incision line from my parotidectomy which was excised and used for tumor markers, so did not need to have any of my scalp lesions biopsied.

January will be three years since the combo trial started for me — still NED…

DVD

George – 

I took a quick look at their website and, without a lot of fact-finding, it appears that the concept of assays for these specific gene expressions does have some validity. However, as sensitive as the assay may be, it is not too specific. Over 30% of positive results were from non-melanoma lesions. I am not a biochemist, nor a statistician, so I am not qualified to fully assess their data, but I do have a science background, and the clinical data supporting the promotion of this for clinical diagnosis appears, to me, needs to be greatly expanded.

Although it is a secondary way of assessing validity of new technology in medicine, (and some feel it has an inherent negative bias) one can look at whether or not Medicare reimburses for a specific procedure. The Agency for Health Care Quality and Research maintains a Technology Assessment center which advises CMS on evidence-based outcomes. If it's not reimbursed my Medicare, most medical insurance companies follow suit. This is just an indicator – not always a true determination of effectiveness.

None of this is perfect and this is another demonstration of the fact that the US does not have a "Health Care System," we have a "Health Care Market." One can argue for or against this situation and it has advantages and disadvantages, but the incentive is to get something "out there" in the marketplace and make a profit. This seems to be a product hoping to become standard of care, but, I think, has quite a ways to go…

DVD

George – 

I took a quick look at their website and, without a lot of fact-finding, it appears that the concept of assays for these specific gene expressions does have some validity. However, as sensitive as the assay may be, it is not too specific. Over 30% of positive results were from non-melanoma lesions. I am not a biochemist, nor a statistician, so I am not qualified to fully assess their data, but I do have a science background, and the clinical data supporting the promotion of this for clinical diagnosis appears, to me, needs to be greatly expanded.

Although it is a secondary way of assessing validity of new technology in medicine, (and some feel it has an inherent negative bias) one can look at whether or not Medicare reimburses for a specific procedure. The Agency for Health Care Quality and Research maintains a Technology Assessment center which advises CMS on evidence-based outcomes. If it's not reimbursed my Medicare, most medical insurance companies follow suit. This is just an indicator – not always a true determination of effectiveness.

None of this is perfect and this is another demonstration of the fact that the US does not have a "Health Care System," we have a "Health Care Market." One can argue for or against this situation and it has advantages and disadvantages, but the incentive is to get something "out there" in the marketplace and make a profit. This seems to be a product hoping to become standard of care, but, I think, has quite a ways to go…

DVD

George – 

I took a quick look at their website and, without a lot of fact-finding, it appears that the concept of assays for these specific gene expressions does have some validity. However, as sensitive as the assay may be, it is not too specific. Over 30% of positive results were from non-melanoma lesions. I am not a biochemist, nor a statistician, so I am not qualified to fully assess their data, but I do have a science background, and the clinical data supporting the promotion of this for clinical diagnosis appears, to me, needs to be greatly expanded.

Although it is a secondary way of assessing validity of new technology in medicine, (and some feel it has an inherent negative bias) one can look at whether or not Medicare reimburses for a specific procedure. The Agency for Health Care Quality and Research maintains a Technology Assessment center which advises CMS on evidence-based outcomes. If it's not reimbursed my Medicare, most medical insurance companies follow suit. This is just an indicator – not always a true determination of effectiveness.

None of this is perfect and this is another demonstration of the fact that the US does not have a "Health Care System," we have a "Health Care Market." One can argue for or against this situation and it has advantages and disadvantages, but the incentive is to get something "out there" in the marketplace and make a profit. This seems to be a product hoping to become standard of care, but, I think, has quite a ways to go…

DVD

Josh –

When I started in the combi ipi/nivo trial (Jan 7, 2014) I had about a dozen sub-q lesions on my scalp, all hard and about the size of a pea. The first change I noticed was in about 2 weeks when they became a bit more inflamed (sore) and started to soften up. I also had a large tumor about the size of a lemon in my calf muscle. I had asked the oncologist about a possible resection of that tumor since it was isolated and accessible. I thought his answer was a bit bizarre when he said he wanted to leave it because it was so easily palpable and he could assess my response to therapy by checking it regularly. My other tumors (lungs, spine, neck) could only be seen/tracked on imaging studies. The leg tumor, which had been hard as a rock, started to soften at 2-3 weeks, about the same time my pulmonary symptoms of shortness of breath and coughing started to resolve. The "softening" of the tumors continued until by about 10 weeks into the trial, when they had completely resolved with only a little residual soreness in my leg. A 12 week CT/PET showed resolution of all tumors with just some lucency in the bones where tumors had been. Even this normalized over the next 3 months and I continue to be NED.

Here's hoping a similar experience for you…

DVD

Josh –

When I started in the combi ipi/nivo trial (Jan 7, 2014) I had about a dozen sub-q lesions on my scalp, all hard and about the size of a pea. The first change I noticed was in about 2 weeks when they became a bit more inflamed (sore) and started to soften up. I also had a large tumor about the size of a lemon in my calf muscle. I had asked the oncologist about a possible resection of that tumor since it was isolated and accessible. I thought his answer was a bit bizarre when he said he wanted to leave it because it was so easily palpable and he could assess my response to therapy by checking it regularly. My other tumors (lungs, spine, neck) could only be seen/tracked on imaging studies. The leg tumor, which had been hard as a rock, started to soften at 2-3 weeks, about the same time my pulmonary symptoms of shortness of breath and coughing started to resolve. The "softening" of the tumors continued until by about 10 weeks into the trial, when they had completely resolved with only a little residual soreness in my leg. A 12 week CT/PET showed resolution of all tumors with just some lucency in the bones where tumors had been. Even this normalized over the next 3 months and I continue to be NED.

Here's hoping a similar experience for you…

DVD

Josh –

When I started in the combi ipi/nivo trial (Jan 7, 2014) I had about a dozen sub-q lesions on my scalp, all hard and about the size of a pea. The first change I noticed was in about 2 weeks when they became a bit more inflamed (sore) and started to soften up. I also had a large tumor about the size of a lemon in my calf muscle. I had asked the oncologist about a possible resection of that tumor since it was isolated and accessible. I thought his answer was a bit bizarre when he said he wanted to leave it because it was so easily palpable and he could assess my response to therapy by checking it regularly. My other tumors (lungs, spine, neck) could only be seen/tracked on imaging studies. The leg tumor, which had been hard as a rock, started to soften at 2-3 weeks, about the same time my pulmonary symptoms of shortness of breath and coughing started to resolve. The "softening" of the tumors continued until by about 10 weeks into the trial, when they had completely resolved with only a little residual soreness in my leg. A 12 week CT/PET showed resolution of all tumors with just some lucency in the bones where tumors had been. Even this normalized over the next 3 months and I continue to be NED.

Here's hoping a similar experience for you…

DVD

Interesting perspective, Mat – it got me counting. We seem to be on a similar trajectory, my Stage 1 diagnosis was in 2006 and my advanced Stage 4 diagnosis was late 2013. I received my first combo (nivo/ipi) Jan. 7, 2014 – 970 days ago, responded quickly and completely, and remain NED.

I don't usually count the days, but there isn't a day that goes by that I don't think, at some point, what things would have been like if I hadn't gotten into that clinical trial. Brings to mind that old saying:

Not all things that count can be counted…

DVD

Interesting perspective, Mat – it got me counting. We seem to be on a similar trajectory, my Stage 1 diagnosis was in 2006 and my advanced Stage 4 diagnosis was late 2013. I received my first combo (nivo/ipi) Jan. 7, 2014 – 970 days ago, responded quickly and completely, and remain NED.

I don't usually count the days, but there isn't a day that goes by that I don't think, at some point, what things would have been like if I hadn't gotten into that clinical trial. Brings to mind that old saying:

Not all things that count can be counted…

DVD

Interesting perspective, Mat – it got me counting. We seem to be on a similar trajectory, my Stage 1 diagnosis was in 2006 and my advanced Stage 4 diagnosis was late 2013. I received my first combo (nivo/ipi) Jan. 7, 2014 – 970 days ago, responded quickly and completely, and remain NED.

I don't usually count the days, but there isn't a day that goes by that I don't think, at some point, what things would have been like if I hadn't gotten into that clinical trial. Brings to mind that old saying:

Not all things that count can be counted…

DVD