AndyT

Dear all,

so in order to hopefully buy some time we started today with dacarbazine, but are still investigating other options. As regards Ipi and Mic Stage IV patients we found out today there are no medical restraints, merely financial ones, so at least that question is resolved. I am however wondering about your experiences of ipi after vemurafenib. Are there some recent studies speaking in favour of it or is the case that ipi rarely works if patient had progressed on vemurafenib. We are getting some contradicting information.

We have not given up on clinical trials, we will start contacting study sites tomorrow. Also what do studies say about ipi and heavy tumor burden…what is actually considered a heavy tumor burden?

My wife is extremely brave, she amazes me each time, and we are keeping it strong. Keep  your fingers crossed!

All the best to you all,

AndyT

Dear all,

so in order to hopefully buy some time we started today with dacarbazine, but are still investigating other options. As regards Ipi and Mic Stage IV patients we found out today there are no medical restraints, merely financial ones, so at least that question is resolved. I am however wondering about your experiences of ipi after vemurafenib. Are there some recent studies speaking in favour of it or is the case that ipi rarely works if patient had progressed on vemurafenib. We are getting some contradicting information.

We have not given up on clinical trials, we will start contacting study sites tomorrow. Also what do studies say about ipi and heavy tumor burden…what is actually considered a heavy tumor burden?

My wife is extremely brave, she amazes me each time, and we are keeping it strong. Keep  your fingers crossed!

All the best to you all,

AndyT

Dear all,

so in order to hopefully buy some time we started today with dacarbazine, but are still investigating other options. As regards Ipi and Mic Stage IV patients we found out today there are no medical restraints, merely financial ones, so at least that question is resolved. I am however wondering about your experiences of ipi after vemurafenib. Are there some recent studies speaking in favour of it or is the case that ipi rarely works if patient had progressed on vemurafenib. We are getting some contradicting information.

We have not given up on clinical trials, we will start contacting study sites tomorrow. Also what do studies say about ipi and heavy tumor burden…what is actually considered a heavy tumor burden?

My wife is extremely brave, she amazes me each time, and we are keeping it strong. Keep  your fingers crossed!

All the best to you all,

AndyT

Dear all,

thank you so much for replying. I've been busy locating all the possible clinical trials and learning as much as I can. We are scheduled with our oncologist to discuss our options. Last week the we were so shattered that we did not even know what to ask. As far as I've learned from all the replies and reading, ipi is alo frequently given also to Stage IV 1mc staged patients, but it is up to the oncologist. We hope to have an honest discussin about that tomorrow, as well as abut the option for an operation of the largest tumor in the abdomen area, given that the other smaller ones in the lungs seem to remain the same throughou zelboraf treatment.

Keep your fingers crossed, I wish all the best to you,

Andy

Dear all,

thank you so much for replying. I've been busy locating all the possible clinical trials and learning as much as I can. We are scheduled with our oncologist to discuss our options. Last week the we were so shattered that we did not even know what to ask. As far as I've learned from all the replies and reading, ipi is alo frequently given also to Stage IV 1mc staged patients, but it is up to the oncologist. We hope to have an honest discussin about that tomorrow, as well as abut the option for an operation of the largest tumor in the abdomen area, given that the other smaller ones in the lungs seem to remain the same throughou zelboraf treatment.

Keep your fingers crossed, I wish all the best to you,

Andy

Dear all,

thank you so much for replying. I've been busy locating all the possible clinical trials and learning as much as I can. We are scheduled with our oncologist to discuss our options. Last week the we were so shattered that we did not even know what to ask. As far as I've learned from all the replies and reading, ipi is alo frequently given also to Stage IV 1mc staged patients, but it is up to the oncologist. We hope to have an honest discussin about that tomorrow, as well as abut the option for an operation of the largest tumor in the abdomen area, given that the other smaller ones in the lungs seem to remain the same throughou zelboraf treatment.

Keep your fingers crossed, I wish all the best to you,

Andy

Thank you all for your replies:) Especially Maureen, I will send you a private mesage:)

I kind of got the confirmation of my understanding that chemo is the last option – we will need to have a thorough talk with our oncologist. The thing is, we live in a small EU country (Slovenia), where we only have one oncological institute, so any other melanoma specialist we would have to find oudside the country. Given the severity of the situatuion we are of course exploring all options. Costs could unfortunately be a major issue:( Clinical studies therefore seem to be the best options – I will do my best to get us into one.

If there's anybody reading this from EU – do you know if there are any restrictions in joining a clinical trial in another EU member state? We would be prepared to travel to other countries if necessary.

Thank you all, it means to world to us to be able to get such feedback!

All the best,
Andy

Thank you all for your replies:) Especially Maureen, I will send you a private mesage:)

I kind of got the confirmation of my understanding that chemo is the last option – we will need to have a thorough talk with our oncologist. The thing is, we live in a small EU country (Slovenia), where we only have one oncological institute, so any other melanoma specialist we would have to find oudside the country. Given the severity of the situatuion we are of course exploring all options. Costs could unfortunately be a major issue:( Clinical studies therefore seem to be the best options – I will do my best to get us into one.

If there's anybody reading this from EU – do you know if there are any restrictions in joining a clinical trial in another EU member state? We would be prepared to travel to other countries if necessary.

Thank you all, it means to world to us to be able to get such feedback!

All the best,
Andy

Thank you all for your replies:) Especially Maureen, I will send you a private mesage:)

I kind of got the confirmation of my understanding that chemo is the last option – we will need to have a thorough talk with our oncologist. The thing is, we live in a small EU country (Slovenia), where we only have one oncological institute, so any other melanoma specialist we would have to find oudside the country. Given the severity of the situatuion we are of course exploring all options. Costs could unfortunately be a major issue:( Clinical studies therefore seem to be the best options – I will do my best to get us into one.

If there's anybody reading this from EU – do you know if there are any restrictions in joining a clinical trial in another EU member state? We would be prepared to travel to other countries if necessary.

Thank you all, it means to world to us to be able to get such feedback!

All the best,
Andy