Kris Oz

Nahmi

As Frank has suggested, maybe you should ask your onc about fotemustine (if you can't find a trial or something for the interim).  We were told that this can work when DTIC hasn't and does cross the blood brain barrier.

All the best

Kristy (Perth)

Nahmi

As Frank has suggested, maybe you should ask your onc about fotemustine (if you can't find a trial or something for the interim).  We were told that this can work when DTIC hasn't and does cross the blood brain barrier.

All the best

Kristy (Perth)

Nahmi

As Frank has suggested, maybe you should ask your onc about fotemustine (if you can't find a trial or something for the interim).  We were told that this can work when DTIC hasn't and does cross the blood brain barrier.

All the best

Kristy (Perth)

Very, very sad.

It was strange that nowhere was it mentioned that he had melanoma (today was reported brain cancer) but reading between the lines it was clear that it was (but only to those who would know – "lump found on back").  He was very high profile about his fight and it would've been good if it was put out there that it was "just skin cancer".

Feel for his family.

Very, very sad.

It was strange that nowhere was it mentioned that he had melanoma (today was reported brain cancer) but reading between the lines it was clear that it was (but only to those who would know – "lump found on back").  He was very high profile about his fight and it would've been good if it was put out there that it was "just skin cancer".

Feel for his family.

Very, very sad.

It was strange that nowhere was it mentioned that he had melanoma (today was reported brain cancer) but reading between the lines it was clear that it was (but only to those who would know – "lump found on back").  He was very high profile about his fight and it would've been good if it was put out there that it was "just skin cancer".

Feel for his family.

Hi Ben

You definitely need to call.  You can imagine how many e-mails they would receive.

I did a few "general" calls to such places as MD Anderson where they would give me only non-specifics (which is understandable as they didn't have any of my Dad's records, only what I was telling them).  Also did the rounds of all Australian hospitals.

Another US oncologist rang me back and did talk directly about my Dad's case which I thought was amazing.  He wasn't a patient and wasn't likely to be, and this guy had me on the phone for about 20 minutes, which I appreciated beyond words.

With the study (CP675,206, which became known as tremelimumab, another CTLA antibody, very similar to ipilimumab – which is now Yervoy but at the time was also a trial not yet available here and called MDX-010), I initally found out about it on this site.  I then looked at the Clinical Trials websites (eg. http://www.clinicaltrials.gov) to see where these trials were being held (checked with our oncologist first to see the time frames for Australia – too long for us to wait).  At the bottom of the trial notes (from the internet), there are contact details.  I just phoned those numbers (lots of getting up in the middle of the night and leaving messages etc).  We also had the support of an excellent oncologist who followed the trial protocols.  To be honest I don't know how much communication he had to do but I got the impression it really wasn't a lot.  More on the side of making sure Dad met the protocols and had the appropriate testing done.

The trial team headed by Dr Antoni Ribas were very helpful and it really couldn't have gone smoother.  UCLA is such an enormous hospital, it was great that they had the facilities for patients so we could stay close by at low cost.  My Dad couldn't have done any of this without the support from my Mum – you will have to have someone to go with you – not only due to the effects of any medication but also to be another set of ears (they tell you so much that you can't remember everything, particularly when it can be so overwhelming).

My only other suggestion is to work closely with your oncologist (our first two were useless so it took a while for us to find one who would go out to bat for us), there may well be suitable trials here in Australia. 

Let us know how you get on.

All the very best

Kristy

Hi Ben

You definitely need to call.  You can imagine how many e-mails they would receive.

I did a few "general" calls to such places as MD Anderson where they would give me only non-specifics (which is understandable as they didn't have any of my Dad's records, only what I was telling them).  Also did the rounds of all Australian hospitals.

Another US oncologist rang me back and did talk directly about my Dad's case which I thought was amazing.  He wasn't a patient and wasn't likely to be, and this guy had me on the phone for about 20 minutes, which I appreciated beyond words.

With the study (CP675,206, which became known as tremelimumab, another CTLA antibody, very similar to ipilimumab – which is now Yervoy but at the time was also a trial not yet available here and called MDX-010), I initally found out about it on this site.  I then looked at the Clinical Trials websites (eg. http://www.clinicaltrials.gov) to see where these trials were being held (checked with our oncologist first to see the time frames for Australia – too long for us to wait).  At the bottom of the trial notes (from the internet), there are contact details.  I just phoned those numbers (lots of getting up in the middle of the night and leaving messages etc).  We also had the support of an excellent oncologist who followed the trial protocols.  To be honest I don't know how much communication he had to do but I got the impression it really wasn't a lot.  More on the side of making sure Dad met the protocols and had the appropriate testing done.

The trial team headed by Dr Antoni Ribas were very helpful and it really couldn't have gone smoother.  UCLA is such an enormous hospital, it was great that they had the facilities for patients so we could stay close by at low cost.  My Dad couldn't have done any of this without the support from my Mum – you will have to have someone to go with you – not only due to the effects of any medication but also to be another set of ears (they tell you so much that you can't remember everything, particularly when it can be so overwhelming).

My only other suggestion is to work closely with your oncologist (our first two were useless so it took a while for us to find one who would go out to bat for us), there may well be suitable trials here in Australia. 

Let us know how you get on.

All the very best

Kristy

Hi Ben

I haven't been on the board for years (with the upgrade I thought it was time . . .) but often "lurk" to see how everyone is going.  I've had a few tears tonight reading about NicOz and looking back on a few of her posts saw this one from you.  I understand that you wrote this a while back but I thought I may be able to help.

My Dad participated in a trial run by Pfizer at UCLA in 2005 (we are in Perth).  To be honest it wasn't all that difficult and the trial staff were very helpful.  He could do all of the preliminary testing here – his onc was wonderful and was happy to help in any way he could.  As you are aware, trials are free and there was a hostel near to the hospital for patients which is reasonably priced (actually very nice).

What was a barrier was the other expenses.  I contacted many government agencies to see if they could help but they wouldn't provide any financial assistance to "experimental treatments".  As part of the trial Dad had to travel to the US every month (we stayed there for about a month at the beginning to do specialised testing that couldn't be done here).  As Dad was so unwell at the time we had to fly business class which obviously wasn't cheap.  For the latter trips Mum and him would fly in, go straight to the hospital to have the treatment, stay overnight and then fly home (as you know, over 24 hours travelling time one way).

The reasoning behind staying only overnight as we couldn't afford for him to require any medical treatment not covered by the trial (as no medical insurance would cover it being in a foreign country).  We once had to get him a blood transfusion and it was a couple of thousand dollars which had to be paid before they even let him through the door.

I won't ramble on, be do let me know if you would like any further information.  I found the US institutions (I rang a few) to be nothing but helpful ~ and we made the decision to travel as Dad didn't have the time to wait for the trial to come here (which it eventually did).

All the best

Kristy

Hi Ben

I haven't been on the board for years (with the upgrade I thought it was time . . .) but often "lurk" to see how everyone is going.  I've had a few tears tonight reading about NicOz and looking back on a few of her posts saw this one from you.  I understand that you wrote this a while back but I thought I may be able to help.

My Dad participated in a trial run by Pfizer at UCLA in 2005 (we are in Perth).  To be honest it wasn't all that difficult and the trial staff were very helpful.  He could do all of the preliminary testing here – his onc was wonderful and was happy to help in any way he could.  As you are aware, trials are free and there was a hostel near to the hospital for patients which is reasonably priced (actually very nice).

What was a barrier was the other expenses.  I contacted many government agencies to see if they could help but they wouldn't provide any financial assistance to "experimental treatments".  As part of the trial Dad had to travel to the US every month (we stayed there for about a month at the beginning to do specialised testing that couldn't be done here).  As Dad was so unwell at the time we had to fly business class which obviously wasn't cheap.  For the latter trips Mum and him would fly in, go straight to the hospital to have the treatment, stay overnight and then fly home (as you know, over 24 hours travelling time one way).

The reasoning behind staying only overnight as we couldn't afford for him to require any medical treatment not covered by the trial (as no medical insurance would cover it being in a foreign country).  We once had to get him a blood transfusion and it was a couple of thousand dollars which had to be paid before they even let him through the door.

I won't ramble on, be do let me know if you would like any further information.  I found the US institutions (I rang a few) to be nothing but helpful ~ and we made the decision to travel as Dad didn't have the time to wait for the trial to come here (which it eventually did).

All the best

Kristy