dhrahn

My husband started on zelboraf alone.  It worked for about 9 months and then things started growing again… Then went to yervoy (didn't work), trial includeing interlleuikin (didn't work), he was on eap PD1 only 2 infusions and had an "explosion" of tumors metastising to liver, spleen, spine all over really.  We have 2 oncologists, one doesn't think he was on PD1 long enough to know if it was working or wasn't working.  But at the time he was hospitalized for failing kidney, dehydration, pain and contipation they put him on steroids and decided to restart zelboraf and add mek hoping that his body had "forgotten" about the Z.  He has been on it about 2 weeks and things already are shrinking again….  They don't think it will work as long as it did last time but it's working for now… Once it quits working, hopefully PD1 will be FDA approved and we can try that route again….    So to answer your question, it is working after coming back to it for now…. 

My husband started on zelboraf alone.  It worked for about 9 months and then things started growing again… Then went to yervoy (didn't work), trial includeing interlleuikin (didn't work), he was on eap PD1 only 2 infusions and had an "explosion" of tumors metastising to liver, spleen, spine all over really.  We have 2 oncologists, one doesn't think he was on PD1 long enough to know if it was working or wasn't working.  But at the time he was hospitalized for failing kidney, dehydration, pain and contipation they put him on steroids and decided to restart zelboraf and add mek hoping that his body had "forgotten" about the Z.  He has been on it about 2 weeks and things already are shrinking again….  They don't think it will work as long as it did last time but it's working for now… Once it quits working, hopefully PD1 will be FDA approved and we can try that route again….    So to answer your question, it is working after coming back to it for now…. 

My husband started on zelboraf alone.  It worked for about 9 months and then things started growing again… Then went to yervoy (didn't work), trial includeing interlleuikin (didn't work), he was on eap PD1 only 2 infusions and had an "explosion" of tumors metastising to liver, spleen, spine all over really.  We have 2 oncologists, one doesn't think he was on PD1 long enough to know if it was working or wasn't working.  But at the time he was hospitalized for failing kidney, dehydration, pain and contipation they put him on steroids and decided to restart zelboraf and add mek hoping that his body had "forgotten" about the Z.  He has been on it about 2 weeks and things already are shrinking again….  They don't think it will work as long as it did last time but it's working for now… Once it quits working, hopefully PD1 will be FDA approved and we can try that route again….    So to answer your question, it is working after coming back to it for now…. 

My husbands testosterone, cortisol, and all other hormones dropped.  They thought he was going into adrenal failure.  We are now seeing a endocronologist to find out if in fact adrenals or pituitary.  We asked about testosterone cream/supplement and she said that because testosterone is a growth hormone she wouldn't advise it.  Don't need anytthing to help melanoma grow anymore… 🙁

My husbands testosterone, cortisol, and all other hormones dropped.  They thought he was going into adrenal failure.  We are now seeing a endocronologist to find out if in fact adrenals or pituitary.  We asked about testosterone cream/supplement and she said that because testosterone is a growth hormone she wouldn't advise it.  Don't need anytthing to help melanoma grow anymore… 🙁

My husbands testosterone, cortisol, and all other hormones dropped.  They thought he was going into adrenal failure.  We are now seeing a endocronologist to find out if in fact adrenals or pituitary.  We asked about testosterone cream/supplement and she said that because testosterone is a growth hormone she wouldn't advise it.  Don't need anytthing to help melanoma grow anymore… 🙁

I don't know if it is the right thing to do but anytime my husband didn't want to tell the Dr. and it got to the point I felt it was an issue, I told the doctor.  Maybe you could email the doctor with your concerns and why? Then maybe the doctor can bring it up?  My husband adrenals failed from ippi and that caused him to be terribly irritable….   Sometimes other meds he may be taking, or maybe depression?  It can be so many different things…    Best of luck!

I don't know if it is the right thing to do but anytime my husband didn't want to tell the Dr. and it got to the point I felt it was an issue, I told the doctor.  Maybe you could email the doctor with your concerns and why? Then maybe the doctor can bring it up?  My husband adrenals failed from ippi and that caused him to be terribly irritable….   Sometimes other meds he may be taking, or maybe depression?  It can be so many different things…    Best of luck!

I don't know if it is the right thing to do but anytime my husband didn't want to tell the Dr. and it got to the point I felt it was an issue, I told the doctor.  Maybe you could email the doctor with your concerns and why? Then maybe the doctor can bring it up?  My husband adrenals failed from ippi and that caused him to be terribly irritable….   Sometimes other meds he may be taking, or maybe depression?  It can be so many different things…    Best of luck!

Usually they cover doctor appointments, the drug and all the scans or xrays that are needed.  Hotels, gas and parking I've heard you can become part of  different foundations that will help with those expenses.   It's a hard decision but you are right.  You need to get the best care.

Usually they cover doctor appointments, the drug and all the scans or xrays that are needed.  Hotels, gas and parking I've heard you can become part of  different foundations that will help with those expenses.   It's a hard decision but you are right.  You need to get the best care.

Usually they cover doctor appointments, the drug and all the scans or xrays that are needed.  Hotels, gas and parking I've heard you can become part of  different foundations that will help with those expenses.   It's a hard decision but you are right.  You need to get the best care.

Yes, he has been on Zelboraf and yervoy.   Zelboraf knocked everything down a lot and even got rid of 2 lung mets.  But Ipi didn't do much.  They considered him to have "failed" treatment… Which you are right I believe that is required for the eap PD1.

Yes, he has been on Zelboraf and yervoy.   Zelboraf knocked everything down a lot and even got rid of 2 lung mets.  But Ipi didn't do much.  They considered him to have "failed" treatment… Which you are right I believe that is required for the eap PD1.

Yes, he has been on Zelboraf and yervoy.   Zelboraf knocked everything down a lot and even got rid of 2 lung mets.  But Ipi didn't do much.  They considered him to have "failed" treatment… Which you are right I believe that is required for the eap PD1.