Decision was made

I am curious why Zelboraf was taken off the table.  I know that the decision about immunotherapy vs. targeted therapy is not resolved.  Some doctors prescribe one first, and some do the other.  Just wonder how that decision was reached for your situation.

I know two complete responders to IL2 and they both are big believers in the treatment.  One of them told me last week that the doctors he talks with report that when IL-2 is offered as a first line treatment they are getting good response rates. If you are interested in speaking with one of them let me know.

Tim–MRF

tturnham@melanoma.org

I am curious why Zelboraf was taken off the table.  I know that the decision about immunotherapy vs. targeted therapy is not resolved.  Some doctors prescribe one first, and some do the other.  Just wonder how that decision was reached for your situation.

I know two complete responders to IL2 and they both are big believers in the treatment.  One of them told me last week that the doctors he talks with report that when IL-2 is offered as a first line treatment they are getting good response rates. If you are interested in speaking with one of them let me know.

Tim–MRF

tturnham@melanoma.org

I am curious why Zelboraf was taken off the table.  I know that the decision about immunotherapy vs. targeted therapy is not resolved.  Some doctors prescribe one first, and some do the other.  Just wonder how that decision was reached for your situation.

I know two complete responders to IL2 and they both are big believers in the treatment.  One of them told me last week that the doctors he talks with report that when IL-2 is offered as a first line treatment they are getting good response rates. If you are interested in speaking with one of them let me know.

Tim–MRF

tturnham@melanoma.org

I just finished 3rd round of biochemo with il2 and we had great results. I am also under Gailanis' care. They do a great job of managining side effects during treatment. When home just keep hydrated as much as possible. 

I just finished 3rd round of biochemo with il2 and we had great results. I am also under Gailanis' care. They do a great job of managining side effects during treatment. When home just keep hydrated as much as possible. 

I just finished 3rd round of biochemo with il2 and we had great results. I am also under Gailanis' care. They do a great job of managining side effects during treatment. When home just keep hydrated as much as possible. 

I know several complete responders to IL-2.  Rick (from NC), who posted recently has been NED for over 20 years since having IL-2 as his only systemic treatment.  The two that get talked about the most now days is DebbieVa and Jane from Maine.  They are at the six year point since their IL-2 complete responses.  Some Oncologists consider one CURED if they go ten years NED after IL-2 treatment.  I have not heard of anyone that has had a re-occurance after reaching the 10 year point of complete response to IL-2.  IL-2 (5-6% complete long term response  and ~15% partial response)  has often been found to enhance other treatments.  IL-2 and Ipi have appeared to help each other when used sequently.  
One learns quickly if IL-2 is slowing things down or not.  IPI can take up to a year to tell if one is responding to it.  (Usually less than a year!)  If ones tumor load is not at a critcal point and needing immediate reduction, then IL-2 or Ipi stand a better chance of long term response than Zelboraf.

I was a partial responder to IL-2 for 20 months.  I wanted it early in the treatment process since it was supposed to be the toughest treatment to take with one of the shortest times to learn if it was being beneficial.  Jane gives much great help for people going into Il-2 treatments.  I listed Janes URL for heer great info site, but the new BB refused to allow my post giving that info.  I will try to just list what comes after the : //

melanomaresources.info/jane.html#homenotes

If you read my profile, I tried to show what I was going thru as I did the treatments.  They are doable and I would be willing to do it again if needed. 

You can also do a search in our archives and the new BB and get others advise/experiences.  You do want to have a very experienced IL-2 Oncologist and staff that will provide immediate response when you contact them about side-effects.

Do not delay telling the nurses about the beginning of the Rigor (chills) or nausea.  Delay in getting the side effects counteracted makes the treatment harder to take and reduces the number of bags one can tolerate. One needs to drink regularly to keep up the urine flow since the two main reasons for skipping bags are low kidney function and low Blood Pressure. They skip bags when your blood pressure (systolic) drops below 90.  Very few people actually get the full 14 bags in the 5 days of hospitalization.

I will be glad to talk with you either via e-mail, or phone if you like.

I know several complete responders to IL-2.  Rick (from NC), who posted recently has been NED for over 20 years since having IL-2 as his only systemic treatment.  The two that get talked about the most now days is DebbieVa and Jane from Maine.  They are at the six year point since their IL-2 complete responses.  Some Oncologists consider one CURED if they go ten years NED after IL-2 treatment.  I have not heard of anyone that has had a re-occurance after reaching the 10 year point of complete response to IL-2.  IL-2 (5-6% complete long term response  and ~15% partial response)  has often been found to enhance other treatments.  IL-2 and Ipi have appeared to help each other when used sequently.  
One learns quickly if IL-2 is slowing things down or not.  IPI can take up to a year to tell if one is responding to it.  (Usually less than a year!)  If ones tumor load is not at a critcal point and needing immediate reduction, then IL-2 or Ipi stand a better chance of long term response than Zelboraf.

I was a partial responder to IL-2 for 20 months.  I wanted it early in the treatment process since it was supposed to be the toughest treatment to take with one of the shortest times to learn if it was being beneficial.  Jane gives much great help for people going into Il-2 treatments.  I listed Janes URL for heer great info site, but the new BB refused to allow my post giving that info.  I will try to just list what comes after the : //

melanomaresources.info/jane.html#homenotes

If you read my profile, I tried to show what I was going thru as I did the treatments.  They are doable and I would be willing to do it again if needed. 

You can also do a search in our archives and the new BB and get others advise/experiences.  You do want to have a very experienced IL-2 Oncologist and staff that will provide immediate response when you contact them about side-effects.

Do not delay telling the nurses about the beginning of the Rigor (chills) or nausea.  Delay in getting the side effects counteracted makes the treatment harder to take and reduces the number of bags one can tolerate. One needs to drink regularly to keep up the urine flow since the two main reasons for skipping bags are low kidney function and low Blood Pressure. They skip bags when your blood pressure (systolic) drops below 90.  Very few people actually get the full 14 bags in the 5 days of hospitalization.

I will be glad to talk with you either via e-mail, or phone if you like.

I know several complete responders to IL-2.  Rick (from NC), who posted recently has been NED for over 20 years since having IL-2 as his only systemic treatment.  The two that get talked about the most now days is DebbieVa and Jane from Maine.  They are at the six year point since their IL-2 complete responses.  Some Oncologists consider one CURED if they go ten years NED after IL-2 treatment.  I have not heard of anyone that has had a re-occurance after reaching the 10 year point of complete response to IL-2.  IL-2 (5-6% complete long term response  and ~15% partial response)  has often been found to enhance other treatments.  IL-2 and Ipi have appeared to help each other when used sequently.  
One learns quickly if IL-2 is slowing things down or not.  IPI can take up to a year to tell if one is responding to it.  (Usually less than a year!)  If ones tumor load is not at a critcal point and needing immediate reduction, then IL-2 or Ipi stand a better chance of long term response than Zelboraf.

I was a partial responder to IL-2 for 20 months.  I wanted it early in the treatment process since it was supposed to be the toughest treatment to take with one of the shortest times to learn if it was being beneficial.  Jane gives much great help for people going into Il-2 treatments.  I listed Janes URL for heer great info site, but the new BB refused to allow my post giving that info.  I will try to just list what comes after the : //

melanomaresources.info/jane.html#homenotes

If you read my profile, I tried to show what I was going thru as I did the treatments.  They are doable and I would be willing to do it again if needed. 

You can also do a search in our archives and the new BB and get others advise/experiences.  You do want to have a very experienced IL-2 Oncologist and staff that will provide immediate response when you contact them about side-effects.

Do not delay telling the nurses about the beginning of the Rigor (chills) or nausea.  Delay in getting the side effects counteracted makes the treatment harder to take and reduces the number of bags one can tolerate. One needs to drink regularly to keep up the urine flow since the two main reasons for skipping bags are low kidney function and low Blood Pressure. They skip bags when your blood pressure (systolic) drops below 90.  Very few people actually get the full 14 bags in the 5 days of hospitalization.

I will be glad to talk with you either via e-mail, or phone if you like.

So what exactlyl is IL-2?

My husband was recently disgnosed with Stage IV, multiple lesions including one in the brain. He tested positive for BFRAF and they want to start Zelboraf next week. (Insurance company has denied coverage based upon a slight deviation in his BRAF test, but I hope that will be appealed successfully). Anyway, it seems Zelboraf is the first choice in his case, and moving on to Yervoy/IPI when the Zelboraf stops being effective.

But what else should we know about? What is the IL-2? What other treatments should I be asking the oncologist about?

You guys on this site give me hope. For that I thank you so much!

Janet

So what exactlyl is IL-2?

My husband was recently disgnosed with Stage IV, multiple lesions including one in the brain. He tested positive for BFRAF and they want to start Zelboraf next week. (Insurance company has denied coverage based upon a slight deviation in his BRAF test, but I hope that will be appealed successfully). Anyway, it seems Zelboraf is the first choice in his case, and moving on to Yervoy/IPI when the Zelboraf stops being effective.

But what else should we know about? What is the IL-2? What other treatments should I be asking the oncologist about?

You guys on this site give me hope. For that I thank you so much!

Janet

So what exactlyl is IL-2?

My husband was recently disgnosed with Stage IV, multiple lesions including one in the brain. He tested positive for BFRAF and they want to start Zelboraf next week. (Insurance company has denied coverage based upon a slight deviation in his BRAF test, but I hope that will be appealed successfully). Anyway, it seems Zelboraf is the first choice in his case, and moving on to Yervoy/IPI when the Zelboraf stops being effective.

But what else should we know about? What is the IL-2? What other treatments should I be asking the oncologist about?

You guys on this site give me hope. For that I thank you so much!

Janet