GraemeL

Many thanks to MoiraM, Linny and Anonymous for your time and effort in making these comments.

Susan was a lovely woman.  We met when she was 17, fell in love and married for 40 years when she was 19 and I was just 21. She was a devoted mother and we have three healthy intelligent adult children who are all successful.

The irony to me is that Susan's doctor used silver nitrate sticks to cauterize the known lesion on her left calf in November 2010.  As I see it these did exactly what they were designed to do and killed the melanoma cells in this primary lesion.  Silver nitrate sticks are also used to kill off warts etc but are much more effective than salicylic acid in wart remover.  It was then excised a month later without biopsy.  However, after the fully healed site of the lesion was biopsied in July 2011 with negative results, medical experts decided that the known lesion could not have been the primary site and went looking for the mysterious unknown primary.

Occam's Razor states that the simplest solution is usually the correct one, and this is that the silver nitrate killed the melanoma cells of the known lesion as they are designed to do, resulting in the later negative biopsy of the site.  As the known lesion was already acknowledged, the extreme coincidences involved in having an unknown primary at the same time, and then for it to disappear totally without trace in the same timeframe make it statistically improbable as far as I am concerned.  Doctors have proposed this unknown primary scenario instead of acknowledging that the medically applied silver nitrate killed off the melanoma at the known primary site as it is designed to do.

Appreciate all your comments.

Graeme

Many thanks to MoiraM, Linny and Anonymous for your time and effort in making these comments.

Susan was a lovely woman.  We met when she was 17, fell in love and married for 40 years when she was 19 and I was just 21. She was a devoted mother and we have three healthy intelligent adult children who are all successful.

The irony to me is that Susan's doctor used silver nitrate sticks to cauterize the known lesion on her left calf in November 2010.  As I see it these did exactly what they were designed to do and killed the melanoma cells in this primary lesion.  Silver nitrate sticks are also used to kill off warts etc but are much more effective than salicylic acid in wart remover.  It was then excised a month later without biopsy.  However, after the fully healed site of the lesion was biopsied in July 2011 with negative results, medical experts decided that the known lesion could not have been the primary site and went looking for the mysterious unknown primary.

Occam's Razor states that the simplest solution is usually the correct one, and this is that the silver nitrate killed the melanoma cells of the known lesion as they are designed to do, resulting in the later negative biopsy of the site.  As the known lesion was already acknowledged, the extreme coincidences involved in having an unknown primary at the same time, and then for it to disappear totally without trace in the same timeframe make it statistically improbable as far as I am concerned.  Doctors have proposed this unknown primary scenario instead of acknowledging that the medically applied silver nitrate killed off the melanoma at the known primary site as it is designed to do.

Appreciate all your comments.

Graeme

Many thanks to MoiraM, Linny and Anonymous for your time and effort in making these comments.

Susan was a lovely woman.  We met when she was 17, fell in love and married for 40 years when she was 19 and I was just 21. She was a devoted mother and we have three healthy intelligent adult children who are all successful.

The irony to me is that Susan's doctor used silver nitrate sticks to cauterize the known lesion on her left calf in November 2010.  As I see it these did exactly what they were designed to do and killed the melanoma cells in this primary lesion.  Silver nitrate sticks are also used to kill off warts etc but are much more effective than salicylic acid in wart remover.  It was then excised a month later without biopsy.  However, after the fully healed site of the lesion was biopsied in July 2011 with negative results, medical experts decided that the known lesion could not have been the primary site and went looking for the mysterious unknown primary.

Occam's Razor states that the simplest solution is usually the correct one, and this is that the silver nitrate killed the melanoma cells of the known lesion as they are designed to do, resulting in the later negative biopsy of the site.  As the known lesion was already acknowledged, the extreme coincidences involved in having an unknown primary at the same time, and then for it to disappear totally without trace in the same timeframe make it statistically improbable as far as I am concerned.  Doctors have proposed this unknown primary scenario instead of acknowledging that the medically applied silver nitrate killed off the melanoma at the known primary site as it is designed to do.

Appreciate all your comments.

Graeme

Dear Lynn,

At present Susan has no detectable growths based on CT scans of her head and core body.  She is scheduled for a full body PET scan in October.  I want her to be treated with Ipilimumab to target any undetectable melanoma cells or growths in her body before they get out of control.  This is a long shot, but as I see it this is the only chance she has.  This melanoma grows so fast that by the time it is found it will be uncontrollable.

The hope I have is that Interferon appears to have cleaned up melanoma cells in her body, but it could not work across the blood/brain barrier resulting in this tumor.  There is a chance that this melanoma is vulnerable if it is hit hard and hit early enough.  That is the role of Ipilimumab.

Warm regards,

Graeme

Dear Lynn,

At present Susan has no detectable growths based on CT scans of her head and core body.  She is scheduled for a full body PET scan in October.  I want her to be treated with Ipilimumab to target any undetectable melanoma cells or growths in her body before they get out of control.  This is a long shot, but as I see it this is the only chance she has.  This melanoma grows so fast that by the time it is found it will be uncontrollable.

The hope I have is that Interferon appears to have cleaned up melanoma cells in her body, but it could not work across the blood/brain barrier resulting in this tumor.  There is a chance that this melanoma is vulnerable if it is hit hard and hit early enough.  That is the role of Ipilimumab.

Warm regards,

Graeme

Dear Lynn,

At present Susan has no detectable growths based on CT scans of her head and core body.  She is scheduled for a full body PET scan in October.  I want her to be treated with Ipilimumab to target any undetectable melanoma cells or growths in her body before they get out of control.  This is a long shot, but as I see it this is the only chance she has.  This melanoma grows so fast that by the time it is found it will be uncontrollable.

The hope I have is that Interferon appears to have cleaned up melanoma cells in her body, but it could not work across the blood/brain barrier resulting in this tumor.  There is a chance that this melanoma is vulnerable if it is hit hard and hit early enough.  That is the role of Ipilimumab.

Warm regards,

Graeme

Dear Ashley, 

Many thanks for your feedback.  Unless there are strong reasons against, Susan will go on Yervoy ASAP and we will just have to carry the cost.  I am trying to get an appointment ASAP with the best melanoma specialist at Peter Mac to arrange this.  I will ask him to place Susan on the Yervoy PAP as this is only accessible to medical professionals. 

There are a lot of parallels between your mother’s case and Susan’s.  Susan is also BRAF Negative so Yervoy is the only real option now that Interferon is toxic to her.  As I see it Susan’s only chance is to get on Yervoy early before this melanoma has a chance to grow again.  It grew to a 31x27x22mm tumour in under 5 months (Undetectable in MRI scan on 20 March to CT scan on 13 August) so it will be unstoppable if it gets a grip on her.  This melanoma is very aggressive.

I have already been in touch with Dr Jeff Weber at Moffitt Cancer Center in Florida and would be interested in contacting the professors at Dana-Faber if you are able to provide contact details.  So far all my inquiries indicate that Ipilimumab is the best strategy now, possibly followed by the new Anti-PD1 drugs on trial when these become available.

Please email you phone number to me at [email protected] as I would like to discuss your experience in more detail.

Warm regards,

Graeme

Dear Ashley, 

Many thanks for your feedback.  Unless there are strong reasons against, Susan will go on Yervoy ASAP and we will just have to carry the cost.  I am trying to get an appointment ASAP with the best melanoma specialist at Peter Mac to arrange this.  I will ask him to place Susan on the Yervoy PAP as this is only accessible to medical professionals. 

There are a lot of parallels between your mother’s case and Susan’s.  Susan is also BRAF Negative so Yervoy is the only real option now that Interferon is toxic to her.  As I see it Susan’s only chance is to get on Yervoy early before this melanoma has a chance to grow again.  It grew to a 31x27x22mm tumour in under 5 months (Undetectable in MRI scan on 20 March to CT scan on 13 August) so it will be unstoppable if it gets a grip on her.  This melanoma is very aggressive.

I have already been in touch with Dr Jeff Weber at Moffitt Cancer Center in Florida and would be interested in contacting the professors at Dana-Faber if you are able to provide contact details.  So far all my inquiries indicate that Ipilimumab is the best strategy now, possibly followed by the new Anti-PD1 drugs on trial when these become available.

Please email you phone number to me at [email protected] as I would like to discuss your experience in more detail.

Warm regards,

Graeme

Dear Ashley, 

Many thanks for your feedback.  Unless there are strong reasons against, Susan will go on Yervoy ASAP and we will just have to carry the cost.  I am trying to get an appointment ASAP with the best melanoma specialist at Peter Mac to arrange this.  I will ask him to place Susan on the Yervoy PAP as this is only accessible to medical professionals. 

There are a lot of parallels between your mother’s case and Susan’s.  Susan is also BRAF Negative so Yervoy is the only real option now that Interferon is toxic to her.  As I see it Susan’s only chance is to get on Yervoy early before this melanoma has a chance to grow again.  It grew to a 31x27x22mm tumour in under 5 months (Undetectable in MRI scan on 20 March to CT scan on 13 August) so it will be unstoppable if it gets a grip on her.  This melanoma is very aggressive.

I have already been in touch with Dr Jeff Weber at Moffitt Cancer Center in Florida and would be interested in contacting the professors at Dana-Faber if you are able to provide contact details.  So far all my inquiries indicate that Ipilimumab is the best strategy now, possibly followed by the new Anti-PD1 drugs on trial when these become available.

Please email you phone number to me at [email protected] as I would like to discuss your experience in more detail.

Warm regards,

Graeme

Dear Linda,

We had a similar experience.  Susan had a major operation to remove a large tumor on Wednesday morning two weeks ago and late Thursday afternoon her oncologist walked into her room to find Susan having an animated game of Scrabble with my son and daughter.  You should have seen his face as he came in and realised what was happening.

This is a real tribute to the skill of her neurosurgeon.

Cheers,

Graeme

Dear Linda,

We had a similar experience.  Susan had a major operation to remove a large tumor on Wednesday morning two weeks ago and late Thursday afternoon her oncologist walked into her room to find Susan having an animated game of Scrabble with my son and daughter.  You should have seen his face as he came in and realised what was happening.

This is a real tribute to the skill of her neurosurgeon.

Cheers,

Graeme

Dear Linda,

We had a similar experience.  Susan had a major operation to remove a large tumor on Wednesday morning two weeks ago and late Thursday afternoon her oncologist walked into her room to find Susan having an animated game of Scrabble with my son and daughter.  You should have seen his face as he came in and realised what was happening.

This is a real tribute to the skill of her neurosurgeon.

Cheers,

Graeme

Dear Lynn,

I sent an email to Dr Weber and he replied straight away.  Please pass on my appreciation when you see him.  Subject to checks for suitability etc, it seems that ipilimumab is the best available treatment for Susan at this stage.  This is the drug that Susan was going to go on (trial basis) if she was at Stage 4 last year, but she had to have interferon because she was Stage 3 then.  Anti-PD1 trials are restricted to patients who have failed ipilimumab treatment.

In addition we live in Melbourne Australia and while we are prepared to fly to the US and pay for treatment, there are issues requiring US health insurance.

Due to the high cost ipilimumab is not yet approved for use in Australia by the government authority.  I have been in contact with Bristoy Myers Squibb in Melbourne and they have advised that there is a Yervoy patient access program.  This allows Australian residents to access Yervoy on a full cost basis.

My next step is to find a specialist melanoma oncologist who has real experience with ipilimumab and, subject to the usual checks, arrange for Susan to be given it as quickly as possible.

Thank you very much for this invaluable lead.

Warm regards,

Graeme

Dear Lynn,

I sent an email to Dr Weber and he replied straight away.  Please pass on my appreciation when you see him.  Subject to checks for suitability etc, it seems that ipilimumab is the best available treatment for Susan at this stage.  This is the drug that Susan was going to go on (trial basis) if she was at Stage 4 last year, but she had to have interferon because she was Stage 3 then.  Anti-PD1 trials are restricted to patients who have failed ipilimumab treatment.

In addition we live in Melbourne Australia and while we are prepared to fly to the US and pay for treatment, there are issues requiring US health insurance.

Due to the high cost ipilimumab is not yet approved for use in Australia by the government authority.  I have been in contact with Bristoy Myers Squibb in Melbourne and they have advised that there is a Yervoy patient access program.  This allows Australian residents to access Yervoy on a full cost basis.

My next step is to find a specialist melanoma oncologist who has real experience with ipilimumab and, subject to the usual checks, arrange for Susan to be given it as quickly as possible.

Thank you very much for this invaluable lead.

Warm regards,

Graeme

Dear Lynn,

I sent an email to Dr Weber and he replied straight away.  Please pass on my appreciation when you see him.  Subject to checks for suitability etc, it seems that ipilimumab is the best available treatment for Susan at this stage.  This is the drug that Susan was going to go on (trial basis) if she was at Stage 4 last year, but she had to have interferon because she was Stage 3 then.  Anti-PD1 trials are restricted to patients who have failed ipilimumab treatment.

In addition we live in Melbourne Australia and while we are prepared to fly to the US and pay for treatment, there are issues requiring US health insurance.

Due to the high cost ipilimumab is not yet approved for use in Australia by the government authority.  I have been in contact with Bristoy Myers Squibb in Melbourne and they have advised that there is a Yervoy patient access program.  This allows Australian residents to access Yervoy on a full cost basis.

My next step is to find a specialist melanoma oncologist who has real experience with ipilimumab and, subject to the usual checks, arrange for Susan to be given it as quickly as possible.

Thank you very much for this invaluable lead.

Warm regards,

Graeme