janandben

My husband is currently in a trial at moffitt cancer center …. It's a phase 1 trial using ipi/anti pd1(nivolumab) for stage 3/4 recently NED patients due to resection of tumor.  You have to be NED and you get both of the drugs simultaneously.  It's something to check out, because this trial is a phase one trial for adjuvant use of these drugs (which fits in your husbands case).   The trial is run by Dr. Jeffrey Weber.  

I would hold off on the braf drugs for now.  Ideally you would Use those when you have a heavy tumor burden, because they work quickly when you may not have a lot of time to wait for immunotherapy drugs to kick in.  

My husband is currently in a trial at moffitt cancer center …. It's a phase 1 trial using ipi/anti pd1(nivolumab) for stage 3/4 recently NED patients due to resection of tumor.  You have to be NED and you get both of the drugs simultaneously.  It's something to check out, because this trial is a phase one trial for adjuvant use of these drugs (which fits in your husbands case).   The trial is run by Dr. Jeffrey Weber.  

I would hold off on the braf drugs for now.  Ideally you would Use those when you have a heavy tumor burden, because they work quickly when you may not have a lot of time to wait for immunotherapy drugs to kick in.  

My husband is currently in a trial at moffitt cancer center …. It's a phase 1 trial using ipi/anti pd1(nivolumab) for stage 3/4 recently NED patients due to resection of tumor.  You have to be NED and you get both of the drugs simultaneously.  It's something to check out, because this trial is a phase one trial for adjuvant use of these drugs (which fits in your husbands case).   The trial is run by Dr. Jeffrey Weber.  

I would hold off on the braf drugs for now.  Ideally you would Use those when you have a heavy tumor burden, because they work quickly when you may not have a lot of time to wait for immunotherapy drugs to kick in.  

My husband just had his fourth infusion of ipi/pd1 last week, and we go back next week for his first scans since starting the trial.

 His side effects so far have been fatigue, some fever for a couple days following infusion if he doesn't rest enough.  He also had some sinus and lung inflammation probably related to the drugs that led to a small case of pneumonia. But so far side effects haven't been as bad as zelboraf or the hi dose il2 he has had in the past.  If the scans are good next week he will only be getting the anti pd1 (nivolumab) every 2 weeks for up to 2 years.  We fly to tampa from Houston to get the infusion and are able to fly back out the same night most days to come back home.  We love Moffitt and Dr. Weber. 

My husband just had his fourth infusion of ipi/pd1 last week, and we go back next week for his first scans since starting the trial.

 His side effects so far have been fatigue, some fever for a couple days following infusion if he doesn't rest enough.  He also had some sinus and lung inflammation probably related to the drugs that led to a small case of pneumonia. But so far side effects haven't been as bad as zelboraf or the hi dose il2 he has had in the past.  If the scans are good next week he will only be getting the anti pd1 (nivolumab) every 2 weeks for up to 2 years.  We fly to tampa from Houston to get the infusion and are able to fly back out the same night most days to come back home.  We love Moffitt and Dr. Weber. 

My husband just had his fourth infusion of ipi/pd1 last week, and we go back next week for his first scans since starting the trial.

 His side effects so far have been fatigue, some fever for a couple days following infusion if he doesn't rest enough.  He also had some sinus and lung inflammation probably related to the drugs that led to a small case of pneumonia. But so far side effects haven't been as bad as zelboraf or the hi dose il2 he has had in the past.  If the scans are good next week he will only be getting the anti pd1 (nivolumab) every 2 weeks for up to 2 years.  We fly to tampa from Houston to get the infusion and are able to fly back out the same night most days to come back home.  We love Moffitt and Dr. Weber. 

I agree any and every time we have brought up nutrition with our Drs they always shrug it off.  Even the nutritionists at the hospital aren't much help with giving nutrition advice in the way of supplements ect,  they just want to make sure you are consuming any type of calories whether it be Dairy Queen or salads!  It's a hard road to go when you don't get any support from the MD,  it's usually up to the patient to take charge of that route.  

I agree any and every time we have brought up nutrition with our Drs they always shrug it off.  Even the nutritionists at the hospital aren't much help with giving nutrition advice in the way of supplements ect,  they just want to make sure you are consuming any type of calories whether it be Dairy Queen or salads!  It's a hard road to go when you don't get any support from the MD,  it's usually up to the patient to take charge of that route.  

I agree any and every time we have brought up nutrition with our Drs they always shrug it off.  Even the nutritionists at the hospital aren't much help with giving nutrition advice in the way of supplements ect,  they just want to make sure you are consuming any type of calories whether it be Dairy Queen or salads!  It's a hard road to go when you don't get any support from the MD,  it's usually up to the patient to take charge of that route.  

Of course the earlier the better to detect melanoma for a chance it won't return, but I was trying to state that there is no safe stage for getting diagnosed with melanoma.  Any stage has a chance for recurrance even when you do detect it very early on.  I think that is where many of our friends and people in general take skin cancer lightly because they say "just get it cut off and you are fine."  

Of course the earlier the better to detect melanoma for a chance it won't return, but I was trying to state that there is no safe stage for getting diagnosed with melanoma.  Any stage has a chance for recurrance even when you do detect it very early on.  I think that is where many of our friends and people in general take skin cancer lightly because they say "just get it cut off and you are fine."  

Of course the earlier the better to detect melanoma for a chance it won't return, but I was trying to state that there is no safe stage for getting diagnosed with melanoma.  Any stage has a chance for recurrance even when you do detect it very early on.  I think that is where many of our friends and people in general take skin cancer lightly because they say "just get it cut off and you are fine."  

In response to surgery being basically curative…. One could hope.  My husband had surgery to remove a mole at the age of 22 and was stage T1b as well.  Slnb was negative and routine chest X-rays and blood work were carried out for the next 6 years at md Anderson.  We thought he was "cured" by surgery and lived life.  At the age of 31 he has stage 4 melanoma to brain, bones, liver ect.  It doesn't matter what stage and how early you catch melanoma, there is always a chance for its return.  This mother is asking if any of us have used tummeric with success.  She's not going to poison her 7 year old.  There is no treatment except for surgery for stage t1b…. But nutrition can help build the immune system.  I asked about tummeric when my husband was first diagnosed, but the drs shrugged it off at md Anderson.  Their reason being we wouldn't be able to get the high quantity daily needed for it to be effective.  This post wasn't to scare you I just wanted you to know what we went through, and I would be doing the exact same thing as you if it were my daughter.  I have a 7 year old daughter as well and hope you get the results quickly!! Waiting is the worst!!

In response to surgery being basically curative…. One could hope.  My husband had surgery to remove a mole at the age of 22 and was stage T1b as well.  Slnb was negative and routine chest X-rays and blood work were carried out for the next 6 years at md Anderson.  We thought he was "cured" by surgery and lived life.  At the age of 31 he has stage 4 melanoma to brain, bones, liver ect.  It doesn't matter what stage and how early you catch melanoma, there is always a chance for its return.  This mother is asking if any of us have used tummeric with success.  She's not going to poison her 7 year old.  There is no treatment except for surgery for stage t1b…. But nutrition can help build the immune system.  I asked about tummeric when my husband was first diagnosed, but the drs shrugged it off at md Anderson.  Their reason being we wouldn't be able to get the high quantity daily needed for it to be effective.  This post wasn't to scare you I just wanted you to know what we went through, and I would be doing the exact same thing as you if it were my daughter.  I have a 7 year old daughter as well and hope you get the results quickly!! Waiting is the worst!!

In response to surgery being basically curative…. One could hope.  My husband had surgery to remove a mole at the age of 22 and was stage T1b as well.  Slnb was negative and routine chest X-rays and blood work were carried out for the next 6 years at md Anderson.  We thought he was "cured" by surgery and lived life.  At the age of 31 he has stage 4 melanoma to brain, bones, liver ect.  It doesn't matter what stage and how early you catch melanoma, there is always a chance for its return.  This mother is asking if any of us have used tummeric with success.  She's not going to poison her 7 year old.  There is no treatment except for surgery for stage t1b…. But nutrition can help build the immune system.  I asked about tummeric when my husband was first diagnosed, but the drs shrugged it off at md Anderson.  Their reason being we wouldn't be able to get the high quantity daily needed for it to be effective.  This post wasn't to scare you I just wanted you to know what we went through, and I would be doing the exact same thing as you if it were my daughter.  I have a 7 year old daughter as well and hope you get the results quickly!! Waiting is the worst!!