Feedback on Ipi/GM-CSF trial?

Michelle,

This trial is fairly new – looks like Dec. 2010. To my knowledge Don is the only one on the board that has been offered this trial.  Did they discuss with you that this is a randomized trial?  He would get Ippi on either arm but not the gmcsf.

Have they discussed trying IL2?  While this is a harsh treatment and doesn't have great success, for those that are responders it can be long term.  Also, results are known quickly vs ippi which would take longer to respond to.  I haven't done either just you haven't mentioned it being discussed.

Linda

Michelle,

This trial is fairly new – looks like Dec. 2010. To my knowledge Don is the only one on the board that has been offered this trial.  Did they discuss with you that this is a randomized trial?  He would get Ippi on either arm but not the gmcsf.

Have they discussed trying IL2?  While this is a harsh treatment and doesn't have great success, for those that are responders it can be long term.  Also, results are known quickly vs ippi which would take longer to respond to.  I haven't done either just you haven't mentioned it being discussed.

Linda

Hi Michelle,

Did you get a trial number?  If so that might help others jump in with responses. 

There seem to be a few new trials out there (cancer.gov) which are pairing ipi with other drugs..   I am wondering if that is the case with this trial they are offering your husband?  Did they mention whether or not he would received BOTH Ipi and GM-CSF?  Or was it one versus the other?

I've done both IL-2 (in Boston) and IpI Compassionate Use.  Even with the Ipi side effect I experienced, for me Ipi was a walk in the park compared to IL-2. 

Rocco, Stage IV

Hi Michelle,

Did you get a trial number?  If so that might help others jump in with responses. 

There seem to be a few new trials out there (cancer.gov) which are pairing ipi with other drugs..   I am wondering if that is the case with this trial they are offering your husband?  Did they mention whether or not he would received BOTH Ipi and GM-CSF?  Or was it one versus the other?

I've done both IL-2 (in Boston) and IpI Compassionate Use.  Even with the Ipi side effect I experienced, for me Ipi was a walk in the park compared to IL-2. 

Rocco, Stage IV

Hello Michelle,

I just finished my 4th round of ipi with GM-CSF my trial # is E1608.  My side effects at the beginning was a rash mostly over my chest and back and considerable itching.  As time went on the itching subsided alot.  I am very grateful to my wife for being my nurse as you have to inject the GM-CSF at home everyday for 2 weeks and then 1 week off for 4 sessions as well and from these I had very large red, raised, hot and itching areas around the injection site.  The best area I found for this shot was the back area of my thighs and with time the injection site problem subsided as well.  As far as the success rates go for ipi my oncologist said there is a 1 in 6 response rate.  In my case I know for sure that it worked for me between the second and third treatment because my visible tumor on the back of my scalp shrank dramatically.  My oncologist was ecstatic after seeing how much my tumor had shrunk.  Presently there is a small scab like material that should fall off in time.  At the end of the month I go for scans to see how the tumors in my liver and lung are doing as well as the one on my spine on the back of my head.

It should be noted that I have spent considerable time researching cures for cancer and one common fact is that we are very Vitamin D deficient.  The only way to know for sure is to get tested.  The correct Vitamin D test is Vitamin D, 25-hydroxy. (Lab Corp or see http://www.lef.org ).   See the following link:

 http://articles.mercola.com/sites/articles/archive/2008/12/16/my-one-hour-vitamin-d-lecture-to-clear-up-all-your-confusion-on-this-vital-nutrient.aspx

They usually recommend that cancer patients have a  Vitamin D rating between 80 and 100.  Mine was 90 with the supplement.  Besides the Vitamin D I credit my success to prayers from family and friends and a lot of red wine :-). 

Best Wishes,

Gene

Hello Michelle,

I just finished my 4th round of ipi with GM-CSF my trial # is E1608.  My side effects at the beginning was a rash mostly over my chest and back and considerable itching.  As time went on the itching subsided alot.  I am very grateful to my wife for being my nurse as you have to inject the GM-CSF at home everyday for 2 weeks and then 1 week off for 4 sessions as well and from these I had very large red, raised, hot and itching areas around the injection site.  The best area I found for this shot was the back area of my thighs and with time the injection site problem subsided as well.  As far as the success rates go for ipi my oncologist said there is a 1 in 6 response rate.  In my case I know for sure that it worked for me between the second and third treatment because my visible tumor on the back of my scalp shrank dramatically.  My oncologist was ecstatic after seeing how much my tumor had shrunk.  Presently there is a small scab like material that should fall off in time.  At the end of the month I go for scans to see how the tumors in my liver and lung are doing as well as the one on my spine on the back of my head.

It should be noted that I have spent considerable time researching cures for cancer and one common fact is that we are very Vitamin D deficient.  The only way to know for sure is to get tested.  The correct Vitamin D test is Vitamin D, 25-hydroxy. (Lab Corp or see http://www.lef.org ).   See the following link:

 http://articles.mercola.com/sites/articles/archive/2008/12/16/my-one-hour-vitamin-d-lecture-to-clear-up-all-your-confusion-on-this-vital-nutrient.aspx

They usually recommend that cancer patients have a  Vitamin D rating between 80 and 100.  Mine was 90 with the supplement.  Besides the Vitamin D I credit my success to prayers from family and friends and a lot of red wine :-). 

Best Wishes,

Gene