jhoey

Adrienne,

My deepest sympathy to you & your family. 

Janet

Adrienne,

My deepest sympathy to you & your family. 

Janet

Jan

I started ipi in May of 09 only had 3 infusions & then stopped  because of the rash or it may have been ipi rash plus posion ivy.   Have been NED since probly  Feb of 2010.  They really don't know how much each person needs of ipi. everyone seems to be different.  Sometimes it works right away others it  may take longer.  For how long it will work that is also a question.  I have continued on the maintance program with no ill we effects.  May see the rash as a sign of the drug working. 

Good luck to both of you

Janet

Jan

I started ipi in May of 09 only had 3 infusions & then stopped  because of the rash or it may have been ipi rash plus posion ivy.   Have been NED since probly  Feb of 2010.  They really don't know how much each person needs of ipi. everyone seems to be different.  Sometimes it works right away others it  may take longer.  For how long it will work that is also a question.  I have continued on the maintance program with no ill we effects.  May see the rash as a sign of the drug working. 

Good luck to both of you

Janet

Lisa

Just wanted to tell you that the nodulars in my lungs were melanoma & that is what got me into the ipi trial.  What would have kept me out of the ipi trial would have been if it was in the brain.  i guess all trials are different.  Hope you do get into the Ipi trial, its been working for me.

Good luck

Janet

Lisa

Just wanted to tell you that the nodulars in my lungs were melanoma & that is what got me into the ipi trial.  What would have kept me out of the ipi trial would have been if it was in the brain.  i guess all trials are different.  Hope you do get into the Ipi trial, its been working for me.

Good luck

Janet

Mike

I too express my sympathys to you & your family.  Your wife was blessed to have you by her side threw this terrible journey.  Sometimes its harder being the caretaker then the patient.  I have been on both sides . Life will go on, We have to play the hand we have been dealt in life.  Its not  easy but somehow we get threw it.

My condolenes to you & your family

Janet

Mike

I too express my sympathys to you & your family.  Your wife was blessed to have you by her side threw this terrible journey.  Sometimes its harder being the caretaker then the patient.  I have been on both sides . Life will go on, We have to play the hand we have been dealt in life.  Its not  easy but somehow we get threw it.

My condolenes to you & your family

Janet

I do not know how long iplimumab has been offered but feel extremly fortunate to have gotten into a clinical trial.  My first infussion of ipi was in May 09 the trial I am in has 3 arms we all received ipi.  One arm consisted of ipi alone . the other was with carbo/ taxol & ipi the 3rd an  older standard chemo drug with ipi sorry name I don"t remember.  The object of this study was to see if ipi worked better with other chemo drugs & how we tolerated them etc.

I was in the arm that received carbo/ttaxol.  Aprox 10 days after first infusion I broke out in an extrem rash from head to toe, Red welts looked like the incredible hulk. But no itching.  It was determined I had a drug interaction with the taxol.  After a few days on predisone it all cleared up.  I continued in the trial but only with the ipi infusions alone.

Two more infusions with no problem but after the third I developed another extreme rash but his one didnot looks as bad but ITCHED I had also been doing gardening without gloves so it may have been posin ivy by the time I did go back to oncl it was going away on its own without anything but bendryl & creams so no one was able to determine if it was from Ipi, poison ivy, or most likely the compo of both.  Therfore I skipped the final #4 infusion of ipi.

After my scans in August  I asked Dr. Wolchock of SMK if I would have had a better responce if I had gotten the final dosage his reponce was " You had such a good responce its hard to imagine a better one".  By Dec I was hearing remission & then started to hear NED. 

I continue with the maintance infusion & scans every 3 months.  wich is still a part of the clinical trial the infusion every three months is to continue till the desease progressed or forever if no progression.  Will see if this continues this way with the approval of Ipi.  Have contiued in remission or NED.  I have not had a serve rash again threw the maintance drug.  I do find my skin more dry this past winter then usual small price to pay.  Have never had any diarrah, fatigue or any other symptoms.

A little background had melanoma on chin large excision in 8/07 all lymnodes & margins were clear was staged 2 only because it was over 1mm. No further treatment required.  Thought I was home free, then in March 09 after pet scan 2 small tumors were discovered 1 in each lung. just over 1 cm. each at largest. Needle biopsy done and determined to be melanoma not lung cancer.  Was & am in extreme good health whats a little cancer.  Was very lucky this showed up when it did, qualfied for the trial & have had such good sucess with ipi.  Hopefully this will continue, only time will tell.

Started the clinincal Trial at Memorial Sloan in NYC under Dr. Jedd Wolchok who I can not speak more highly of. A true genious of a Dr. and a most pleasent wonderful man.  May we all be so fortunet to find such caring smart Drs. a rare combination.

My best to all who have the good fortune to qualify for Ipi, may all have the sucess I have had & better.

Janet

I do not know how long iplimumab has been offered but feel extremly fortunate to have gotten into a clinical trial.  My first infussion of ipi was in May 09 the trial I am in has 3 arms we all received ipi.  One arm consisted of ipi alone . the other was with carbo/ taxol & ipi the 3rd an  older standard chemo drug with ipi sorry name I don"t remember.  The object of this study was to see if ipi worked better with other chemo drugs & how we tolerated them etc.

I was in the arm that received carbo/ttaxol.  Aprox 10 days after first infusion I broke out in an extrem rash from head to toe, Red welts looked like the incredible hulk. But no itching.  It was determined I had a drug interaction with the taxol.  After a few days on predisone it all cleared up.  I continued in the trial but only with the ipi infusions alone.

Two more infusions with no problem but after the third I developed another extreme rash but his one didnot looks as bad but ITCHED I had also been doing gardening without gloves so it may have been posin ivy by the time I did go back to oncl it was going away on its own without anything but bendryl & creams so no one was able to determine if it was from Ipi, poison ivy, or most likely the compo of both.  Therfore I skipped the final #4 infusion of ipi.

After my scans in August  I asked Dr. Wolchock of SMK if I would have had a better responce if I had gotten the final dosage his reponce was " You had such a good responce its hard to imagine a better one".  By Dec I was hearing remission & then started to hear NED. 

I continue with the maintance infusion & scans every 3 months.  wich is still a part of the clinical trial the infusion every three months is to continue till the desease progressed or forever if no progression.  Will see if this continues this way with the approval of Ipi.  Have contiued in remission or NED.  I have not had a serve rash again threw the maintance drug.  I do find my skin more dry this past winter then usual small price to pay.  Have never had any diarrah, fatigue or any other symptoms.

A little background had melanoma on chin large excision in 8/07 all lymnodes & margins were clear was staged 2 only because it was over 1mm. No further treatment required.  Thought I was home free, then in March 09 after pet scan 2 small tumors were discovered 1 in each lung. just over 1 cm. each at largest. Needle biopsy done and determined to be melanoma not lung cancer.  Was & am in extreme good health whats a little cancer.  Was very lucky this showed up when it did, qualfied for the trial & have had such good sucess with ipi.  Hopefully this will continue, only time will tell.

Started the clinincal Trial at Memorial Sloan in NYC under Dr. Jedd Wolchok who I can not speak more highly of. A true genious of a Dr. and a most pleasent wonderful man.  May we all be so fortunet to find such caring smart Drs. a rare combination.

My best to all who have the good fortune to qualify for Ipi, may all have the sucess I have had & better.

Janet

Dee

I took your suggestion & called the Drs office @ MSK & was told they have been told by drug company that all clinical studies would continue as planned.  If things should change in the future I would be notified ahead of time.  So far so good but nothing is ever written in stone.  Will see what the future brings.  I do feel better that I called.

Thanks

Janet

Dee

I took your suggestion & called the Drs office @ MSK & was told they have been told by drug company that all clinical studies would continue as planned.  If things should change in the future I would be notified ahead of time.  So far so good but nothing is ever written in stone.  Will see what the future brings.  I do feel better that I called.

Thanks

Janet

Dee

That I have been wondering also.  Had my infusion on 3/17.  Next maintance infusion is on 6/20.  This trial was set up with the maintance infusion  to be done every 3 months so it may contiue as an active trial.  The drug co. supplies the ipi, my insurance pays for all the other expenses, scans, infusion site, blood work etc.  I hope Sloan MK  & Dr. Wolchock will inform me of any changes before 6/20 .

Janet

Dee

That I have been wondering also.  Had my infusion on 3/17.  Next maintance infusion is on 6/20.  This trial was set up with the maintance infusion  to be done every 3 months so it may contiue as an active trial.  The drug co. supplies the ipi, my insurance pays for all the other expenses, scans, infusion site, blood work etc.  I hope Sloan MK  & Dr. Wolchock will inform me of any changes before 6/20 .

Janet