PET False Positives and Post-Interferon Recovery

First of all I"m so sorry that your here but also glad.  I have found this site to be my life support.  

Secondly having your dad go through Interferon for a year is remarkable!  I only lasted 2-1/2 weeks, it's a very tough treatment.  

IF…and I say IF your dad does have lung nodules it is not a death sentence.  I have plenty of lung mets, body mets, and brain mets.  I have since November or probably earlier of last year.  I didn't feel them in my lungs.  There are other treatments that your dad can do that aren't as harsh as Interferon.  Heck almost all of the treatments are better to tolerate.  I have been on Zelboraf for about 6 months.  It works if your BRAF positive.  If they do find his melanoma has metastisized have them check for the BRAF.  Another drug that is working wonders is the ANTI PD 1.  This is in clinical trials only right now.  This is the drug that I"m trying to get on.  The Zelboraf works for some for a long time but for others it doesn't.  My doctor said on average 6-10 months.  I personally want something that lasts longer.  There's also Yervoy (Ipi) which is what I will be starting this week.  This was just FDA approved last year and works really well for some.  

I know, believe me, I know how you feel and what your family is going through.  It's a really tough time.  But someone told me on this site that if your going to get melanoma cancer now is the time to get it.  There are many long term survivors on here and everywhere that are stage IV.  I personally plan on being one of them!!  🙂  

IF it has spread you will want to see a melanoma specialist ASAP!!  If you tell us where you live someone on here probably knows of someone to refer you to.

Hang in there, wait for the CT and other tests to confirm, then take things day by day.  

Wishing you and your family all my best,

Denise

First of all I"m so sorry that your here but also glad.  I have found this site to be my life support.  

Secondly having your dad go through Interferon for a year is remarkable!  I only lasted 2-1/2 weeks, it's a very tough treatment.  

IF…and I say IF your dad does have lung nodules it is not a death sentence.  I have plenty of lung mets, body mets, and brain mets.  I have since November or probably earlier of last year.  I didn't feel them in my lungs.  There are other treatments that your dad can do that aren't as harsh as Interferon.  Heck almost all of the treatments are better to tolerate.  I have been on Zelboraf for about 6 months.  It works if your BRAF positive.  If they do find his melanoma has metastisized have them check for the BRAF.  Another drug that is working wonders is the ANTI PD 1.  This is in clinical trials only right now.  This is the drug that I"m trying to get on.  The Zelboraf works for some for a long time but for others it doesn't.  My doctor said on average 6-10 months.  I personally want something that lasts longer.  There's also Yervoy (Ipi) which is what I will be starting this week.  This was just FDA approved last year and works really well for some.  

I know, believe me, I know how you feel and what your family is going through.  It's a really tough time.  But someone told me on this site that if your going to get melanoma cancer now is the time to get it.  There are many long term survivors on here and everywhere that are stage IV.  I personally plan on being one of them!!  🙂  

IF it has spread you will want to see a melanoma specialist ASAP!!  If you tell us where you live someone on here probably knows of someone to refer you to.

Hang in there, wait for the CT and other tests to confirm, then take things day by day.  

Wishing you and your family all my best,

Denise

First of all I"m so sorry that your here but also glad.  I have found this site to be my life support.  

Secondly having your dad go through Interferon for a year is remarkable!  I only lasted 2-1/2 weeks, it's a very tough treatment.  

IF…and I say IF your dad does have lung nodules it is not a death sentence.  I have plenty of lung mets, body mets, and brain mets.  I have since November or probably earlier of last year.  I didn't feel them in my lungs.  There are other treatments that your dad can do that aren't as harsh as Interferon.  Heck almost all of the treatments are better to tolerate.  I have been on Zelboraf for about 6 months.  It works if your BRAF positive.  If they do find his melanoma has metastisized have them check for the BRAF.  Another drug that is working wonders is the ANTI PD 1.  This is in clinical trials only right now.  This is the drug that I"m trying to get on.  The Zelboraf works for some for a long time but for others it doesn't.  My doctor said on average 6-10 months.  I personally want something that lasts longer.  There's also Yervoy (Ipi) which is what I will be starting this week.  This was just FDA approved last year and works really well for some.  

I know, believe me, I know how you feel and what your family is going through.  It's a really tough time.  But someone told me on this site that if your going to get melanoma cancer now is the time to get it.  There are many long term survivors on here and everywhere that are stage IV.  I personally plan on being one of them!!  🙂  

IF it has spread you will want to see a melanoma specialist ASAP!!  If you tell us where you live someone on here probably knows of someone to refer you to.

Hang in there, wait for the CT and other tests to confirm, then take things day by day.  

Wishing you and your family all my best,

Denise

Landslide,

Sorry to hear but your situation.  Hang in there!  I can't give you a percentage of false positives but I know it's not that uncommon.  I finished my year of interferon in December.  At about the 6 month mark I also had a petscan scare.  The follow-up CTscan led to a dx of scar tissue in my lung.  It's quite possible your Dad's cough may have led to some scar tissue.  Your post reminded me of my cough I had during interferon.  It was by far the worse cough of my life for about 2 months before fading away. 

Unfortunately I progressed to stage IV a couple months ago.  I had surgery to remove some of my small intestines and some lymph nodes and now I'm back to NED.  I'm looking at some adjuvant vaccine trials that weren't available 18 months ago for NED and will be enrolling in one of them in the next couple weeks.  I don't blame your Dad for not wanting to do interferon again nor would I recommend it anyway.  Who knows if it worked for me or your Dad but at the very least it may have delayed it for a short time which with all these great new drugs coming out now may make the difference.  I hope you find out your Dad has a false positive but if it isn't don't lose hope.  These new drugs may not be the ultimate cure but they certainly provide a great deal of hope where there used to be very little.  Please keep us updated.

Brian

Landslide,

Sorry to hear but your situation.  Hang in there!  I can't give you a percentage of false positives but I know it's not that uncommon.  I finished my year of interferon in December.  At about the 6 month mark I also had a petscan scare.  The follow-up CTscan led to a dx of scar tissue in my lung.  It's quite possible your Dad's cough may have led to some scar tissue.  Your post reminded me of my cough I had during interferon.  It was by far the worse cough of my life for about 2 months before fading away. 

Unfortunately I progressed to stage IV a couple months ago.  I had surgery to remove some of my small intestines and some lymph nodes and now I'm back to NED.  I'm looking at some adjuvant vaccine trials that weren't available 18 months ago for NED and will be enrolling in one of them in the next couple weeks.  I don't blame your Dad for not wanting to do interferon again nor would I recommend it anyway.  Who knows if it worked for me or your Dad but at the very least it may have delayed it for a short time which with all these great new drugs coming out now may make the difference.  I hope you find out your Dad has a false positive but if it isn't don't lose hope.  These new drugs may not be the ultimate cure but they certainly provide a great deal of hope where there used to be very little.  Please keep us updated.

Brian

Landslide,

Sorry to hear but your situation.  Hang in there!  I can't give you a percentage of false positives but I know it's not that uncommon.  I finished my year of interferon in December.  At about the 6 month mark I also had a petscan scare.  The follow-up CTscan led to a dx of scar tissue in my lung.  It's quite possible your Dad's cough may have led to some scar tissue.  Your post reminded me of my cough I had during interferon.  It was by far the worse cough of my life for about 2 months before fading away. 

Unfortunately I progressed to stage IV a couple months ago.  I had surgery to remove some of my small intestines and some lymph nodes and now I'm back to NED.  I'm looking at some adjuvant vaccine trials that weren't available 18 months ago for NED and will be enrolling in one of them in the next couple weeks.  I don't blame your Dad for not wanting to do interferon again nor would I recommend it anyway.  Who knows if it worked for me or your Dad but at the very least it may have delayed it for a short time which with all these great new drugs coming out now may make the difference.  I hope you find out your Dad has a false positive but if it isn't don't lose hope.  These new drugs may not be the ultimate cure but they certainly provide a great deal of hope where there used to be very little.  Please keep us updated.

Brian

Sorry to hear your dad is going through all this aggravation.

Unfortunately, there's nothing you can do at the moment except wait and try to not let it get to you.

I don't know the average number of false positives from PET scans, but I do know that they happen. Have you tried searching this forum for posts on false positive PET scans?

If those lung spots turn out to be melanoma,your doctor may:

– Test the tumor to see if the melanoma cells are BRAF positive. If so, then either Zelbaraf or Dabrafenib may be offered as treatment options.

– Offer Yervoy ("Ipi", or Ippilimumab) as a treatment option

– Offer him an Anti PD-1 or Anti PD-L1 trial

But let's hope that you'll never have to have that discussion with the doctor and that the PET scan was just a false positie.

Sorry to hear your dad is going through all this aggravation.

Unfortunately, there's nothing you can do at the moment except wait and try to not let it get to you.

I don't know the average number of false positives from PET scans, but I do know that they happen. Have you tried searching this forum for posts on false positive PET scans?

If those lung spots turn out to be melanoma,your doctor may:

– Test the tumor to see if the melanoma cells are BRAF positive. If so, then either Zelbaraf or Dabrafenib may be offered as treatment options.

– Offer Yervoy ("Ipi", or Ippilimumab) as a treatment option

– Offer him an Anti PD-1 or Anti PD-L1 trial

But let's hope that you'll never have to have that discussion with the doctor and that the PET scan was just a false positie.

Sorry to hear your dad is going through all this aggravation.

Unfortunately, there's nothing you can do at the moment except wait and try to not let it get to you.

I don't know the average number of false positives from PET scans, but I do know that they happen. Have you tried searching this forum for posts on false positive PET scans?

If those lung spots turn out to be melanoma,your doctor may:

– Test the tumor to see if the melanoma cells are BRAF positive. If so, then either Zelbaraf or Dabrafenib may be offered as treatment options.

– Offer Yervoy ("Ipi", or Ippilimumab) as a treatment option

– Offer him an Anti PD-1 or Anti PD-L1 trial

But let's hope that you'll never have to have that discussion with the doctor and that the PET scan was just a false positie.

Both the false negative rate and false positive rate is fairly high with PET scans. As far as melanoma goes, I had false on both sides.

As to whether surgery or systemic treatment comes next depends on your fathers tumor load. Mine was heavy in both lungs so surgery was not feasible.

Do you know if they conducted tests for the Oncoproteins and DNA mutations in your Fathers tumors? Whether they contain the B-Raf or C-kit Oncoproteins and DNA mutations can determine possible treatment options.

I skipped the Interferon (was about your Fathers age). Couldn't stand the thought of it for a year and went to IL-2. IL-2 should be admistered by an highly experienced Oncologist in a specially trained hospital ward for two five day periods out of a month for each of the three rounds. You will know if it is working within a month after the 2^nd week.. One does recover quickly from the side effects. The side effects start getting to one about the third day of administration and lasts for about 7 days until one returns back close to where they were at the start. Twenty percent of across the board melanoma patients have a positive response, and a ¼ of the positive responders do not have a re-occurance.

Ipi is easier on most people, but if one has intestional problems, the colitis that may occur can be life threatening if not quickly controlled. The Oncologist must be kept informed of any side effects in this area.

If one can get in a anti-PD-1 clinical trial, This is the easiest one on the patient regarding side effects and is appearing to one of the most successful of the agents in clinical trials at present.

The other trials I am most interested in now are the antibody-drug conjugate (ADC). http://www.gene.com/stories/understanding-antibody-drug-conjugates

I had PET highlights of many places in my body (Locations that had suffered previous injuries), none showed in my lungs. X-ray's then CT's showed my innumerable lung tumors and their rapid growth. CT's are more definitive as to size and growth. PET scans just show where the glucose uptaake is the highest, not necessarily tumors.

Is your Father seeing a melanoma Specialist at a recognized National Cancer Institute Designated Cancer Center of Excellence?

As far as what will happen if he has a lot of lung tumors, I started with innumerable lung tumors in 2007 and then in developed innumerable new ones and growth of the older ones in 2009. Still here and still active.

Both the false negative rate and false positive rate is fairly high with PET scans. As far as melanoma goes, I had false on both sides.

As to whether surgery or systemic treatment comes next depends on your fathers tumor load. Mine was heavy in both lungs so surgery was not feasible.

Do you know if they conducted tests for the Oncoproteins and DNA mutations in your Fathers tumors? Whether they contain the B-Raf or C-kit Oncoproteins and DNA mutations can determine possible treatment options.

I skipped the Interferon (was about your Fathers age). Couldn't stand the thought of it for a year and went to IL-2. IL-2 should be admistered by an highly experienced Oncologist in a specially trained hospital ward for two five day periods out of a month for each of the three rounds. You will know if it is working within a month after the 2^nd week.. One does recover quickly from the side effects. The side effects start getting to one about the third day of administration and lasts for about 7 days until one returns back close to where they were at the start. Twenty percent of across the board melanoma patients have a positive response, and a ¼ of the positive responders do not have a re-occurance.

Ipi is easier on most people, but if one has intestional problems, the colitis that may occur can be life threatening if not quickly controlled. The Oncologist must be kept informed of any side effects in this area.

If one can get in a anti-PD-1 clinical trial, This is the easiest one on the patient regarding side effects and is appearing to one of the most successful of the agents in clinical trials at present.

The other trials I am most interested in now are the antibody-drug conjugate (ADC). http://www.gene.com/stories/understanding-antibody-drug-conjugates

I had PET highlights of many places in my body (Locations that had suffered previous injuries), none showed in my lungs. X-ray's then CT's showed my innumerable lung tumors and their rapid growth. CT's are more definitive as to size and growth. PET scans just show where the glucose uptaake is the highest, not necessarily tumors.

Is your Father seeing a melanoma Specialist at a recognized National Cancer Institute Designated Cancer Center of Excellence?

As far as what will happen if he has a lot of lung tumors, I started with innumerable lung tumors in 2007 and then in developed innumerable new ones and growth of the older ones in 2009. Still here and still active.

Both the false negative rate and false positive rate is fairly high with PET scans. As far as melanoma goes, I had false on both sides.

As to whether surgery or systemic treatment comes next depends on your fathers tumor load. Mine was heavy in both lungs so surgery was not feasible.

Do you know if they conducted tests for the Oncoproteins and DNA mutations in your Fathers tumors? Whether they contain the B-Raf or C-kit Oncoproteins and DNA mutations can determine possible treatment options.

I skipped the Interferon (was about your Fathers age). Couldn't stand the thought of it for a year and went to IL-2. IL-2 should be admistered by an highly experienced Oncologist in a specially trained hospital ward for two five day periods out of a month for each of the three rounds. You will know if it is working within a month after the 2^nd week.. One does recover quickly from the side effects. The side effects start getting to one about the third day of administration and lasts for about 7 days until one returns back close to where they were at the start. Twenty percent of across the board melanoma patients have a positive response, and a ¼ of the positive responders do not have a re-occurance.

Ipi is easier on most people, but if one has intestional problems, the colitis that may occur can be life threatening if not quickly controlled. The Oncologist must be kept informed of any side effects in this area.

If one can get in a anti-PD-1 clinical trial, This is the easiest one on the patient regarding side effects and is appearing to one of the most successful of the agents in clinical trials at present.

The other trials I am most interested in now are the antibody-drug conjugate (ADC). http://www.gene.com/stories/understanding-antibody-drug-conjugates

I had PET highlights of many places in my body (Locations that had suffered previous injuries), none showed in my lungs. X-ray's then CT's showed my innumerable lung tumors and their rapid growth. CT's are more definitive as to size and growth. PET scans just show where the glucose uptaake is the highest, not necessarily tumors.

Is your Father seeing a melanoma Specialist at a recognized National Cancer Institute Designated Cancer Center of Excellence?

As far as what will happen if he has a lot of lung tumors, I started with innumerable lung tumors in 2007 and then in developed innumerable new ones and growth of the older ones in 2009. Still here and still active.