So Many ?’s…

Lee,

I'm sorry you've had to join us.  The data that has been collected on interfuron is based on starting treatment within 56 days of surgery, your husband has passed that date so you would really have to get info from your Dr. on his or her thoughts! 

Will his insurance pay for Doctor visits and scans?  If so then I really don't understand why they won't pay if he takes part in a clinical trial!  From what I believe the drug in the trial would not be charged to his insurance!!  You might want to have the hospital double check that.   However, do realize that he could get the placebo!!  We have had another on this board whose caretaker believed that Will got the placebo. He did  progress and the drug company would not disclose wether he had it or not and he could not then get it in compassionate care.  It is believed to be FDA approved soon so that should not be an issue if the need arises, but we've been waiting several months for that to happen.

It's a difficult decision.  When I had my first recurrance that put me at stage IV I went on a trial with a placebo arm. I did get the drug but it has now been proven that it showed no benefit. After that point when I've had my next 4 recurrances I've opted for surgery with no drugs and have watched and waited  It's difficult to find a treatment when there is no measurable disease to see if the drug works or not.

Whatever your decision is you just can't look back.   Let us know what you both decide.

Linda

Stage IV since 06

watching lung nodules

Lee,

I'm sorry you've had to join us.  The data that has been collected on interfuron is based on starting treatment within 56 days of surgery, your husband has passed that date so you would really have to get info from your Dr. on his or her thoughts! 

Will his insurance pay for Doctor visits and scans?  If so then I really don't understand why they won't pay if he takes part in a clinical trial!  From what I believe the drug in the trial would not be charged to his insurance!!  You might want to have the hospital double check that.   However, do realize that he could get the placebo!!  We have had another on this board whose caretaker believed that Will got the placebo. He did  progress and the drug company would not disclose wether he had it or not and he could not then get it in compassionate care.  It is believed to be FDA approved soon so that should not be an issue if the need arises, but we've been waiting several months for that to happen.

It's a difficult decision.  When I had my first recurrance that put me at stage IV I went on a trial with a placebo arm. I did get the drug but it has now been proven that it showed no benefit. After that point when I've had my next 4 recurrances I've opted for surgery with no drugs and have watched and waited  It's difficult to find a treatment when there is no measurable disease to see if the drug works or not.

Whatever your decision is you just can't look back.   Let us know what you both decide.

Linda

Stage IV since 06

watching lung nodules

Lee,

Ned is a good place to be… it basically means you don't have to rush into anything. IPI is expected to be approved soon (Yervoy will be the market name).  During a trial the participant (insurance company)  to cover the ancillary hospital expenses.  Usually during the trial the pharma company will supply the drug free and picks up the cost of any expenses that are specific to their trial (special blood draws, some scans, etc) 

Once FDA approval is given most and the treatment is one of the "Standards of Care" then most insurance companies will cover to there polciy requirements.

Then the problem becomes one of treating the unknown.  Most insurance companies will require evidence of need for the treatment and as Linda mentioned without measurable disease the most prudent course today with Melanoma is vigilant watch and wait.

That all being said I would have the trial coordinators work with your insurance company as some trials do not have a placebo arm.  These trials are generally categorized as a stage 2 trial.  (Nothing to do with disease staging)  They are generally done to test dosage amount, frequency, etc.  These trials often prove very effective.  Keep a watch on Cancer.gov

Jerry from Cape Cod
Stage IV
 

Lee,

Ned is a good place to be… it basically means you don't have to rush into anything. IPI is expected to be approved soon (Yervoy will be the market name).  During a trial the participant (insurance company)  to cover the ancillary hospital expenses.  Usually during the trial the pharma company will supply the drug free and picks up the cost of any expenses that are specific to their trial (special blood draws, some scans, etc) 

Once FDA approval is given most and the treatment is one of the "Standards of Care" then most insurance companies will cover to there polciy requirements.

Then the problem becomes one of treating the unknown.  Most insurance companies will require evidence of need for the treatment and as Linda mentioned without measurable disease the most prudent course today with Melanoma is vigilant watch and wait.

That all being said I would have the trial coordinators work with your insurance company as some trials do not have a placebo arm.  These trials are generally categorized as a stage 2 trial.  (Nothing to do with disease staging)  They are generally done to test dosage amount, frequency, etc.  These trials often prove very effective.  Keep a watch on Cancer.gov

Jerry from Cape Cod
Stage IV
 

Hi Lee – I am in a similar situation and was offered similar options.  Except at Mayo they recommended Luekine instead of Interferon because it has fewer side effects.  Neither have proven to be very successful.  Then, I heard through a friend about a relative who was taking a more aggressive approach of bio-chemotherapy in Colorado.  Its rarely used to treat Stage III, but the oncologist there recommended it as the best course of action.  I've gotten through the 4 treatments and am hoping it makes a difference (aren't we all!). 

What DID happen is that 3 months AFTER my surgery to remove the lymph nodes (22 removed, two had mel), is that a small melanoma tumor grew back under my armpit where they removed the lymph nodes.  It was the size of a marble and right near the skin surface.  It showed up on a PET scan as a small area of uptake.  I believe this happened because I also had "extracapsular extension" of the largest affected lymph node.  It just wasn't possible with the surgeon taking lymph nodes out to get the adjacent tissue that had been affected (but that we didn't know about until the path report came back).  I was freaked out.

My oncologist in Colorado was not as concerned.  He said that more than ever, he recommended biochem.  He left the tumor in through rounds 1 and 2 of the biochem (there are 4 rounds).  I had a PET scan then to check on the tumor.  It had completely shrunk to almost nothing and had NO FDG uptake (and indicator that it wasn't active at all).  That meant I was responding well to the treatment and we could HOPE that any other mel cells running around in my system were responding similarly. 

For my second surgery – to get the small, non-growing tumor remnants – my surgeon took much more tissue and we were able to get clean margins in that tissue.  I forgot to mention that I had spot radiation to the armpit area – directly on the area the tumor grew…so, I don't know if that was effective or if it could have been larger.

It is a tough decision, for sure.  But be sure to watch that armpit area for a reoccurrence!!  Good luck!  – Shari

Hi Lee – I am in a similar situation and was offered similar options.  Except at Mayo they recommended Luekine instead of Interferon because it has fewer side effects.  Neither have proven to be very successful.  Then, I heard through a friend about a relative who was taking a more aggressive approach of bio-chemotherapy in Colorado.  Its rarely used to treat Stage III, but the oncologist there recommended it as the best course of action.  I've gotten through the 4 treatments and am hoping it makes a difference (aren't we all!). 

What DID happen is that 3 months AFTER my surgery to remove the lymph nodes (22 removed, two had mel), is that a small melanoma tumor grew back under my armpit where they removed the lymph nodes.  It was the size of a marble and right near the skin surface.  It showed up on a PET scan as a small area of uptake.  I believe this happened because I also had "extracapsular extension" of the largest affected lymph node.  It just wasn't possible with the surgeon taking lymph nodes out to get the adjacent tissue that had been affected (but that we didn't know about until the path report came back).  I was freaked out.

My oncologist in Colorado was not as concerned.  He said that more than ever, he recommended biochem.  He left the tumor in through rounds 1 and 2 of the biochem (there are 4 rounds).  I had a PET scan then to check on the tumor.  It had completely shrunk to almost nothing and had NO FDG uptake (and indicator that it wasn't active at all).  That meant I was responding well to the treatment and we could HOPE that any other mel cells running around in my system were responding similarly. 

For my second surgery – to get the small, non-growing tumor remnants – my surgeon took much more tissue and we were able to get clean margins in that tissue.  I forgot to mention that I had spot radiation to the armpit area – directly on the area the tumor grew…so, I don't know if that was effective or if it could have been larger.

It is a tough decision, for sure.  But be sure to watch that armpit area for a reoccurrence!!  Good luck!  – Shari

Lee, I'm also a biochemotherapy veteran following a Stage IIIc diagnosis in 2003 (14 malignant nodes).  Today, I'm still walking around healthy and NED.  Somehow, someway, my doc at the University of Colorado Cancer Center talked my insurance company into paying for the treatment.  (His parting words to me after I elected to go with biochemo were that he promised not to use the word "experimental" when talking with my insurance company.)  I don't have a clue whether biochemo is an option for a patient with kidney and liver disease, but there's nothing to lose by looking into it.  Best wishes to you and your husband.  I've blogged about the lighter side of my adventures with biochemo etc. at http://www.hotelmelanoma.blogspot.com.   Take care, Rich

Lee, I'm also a biochemotherapy veteran following a Stage IIIc diagnosis in 2003 (14 malignant nodes).  Today, I'm still walking around healthy and NED.  Somehow, someway, my doc at the University of Colorado Cancer Center talked my insurance company into paying for the treatment.  (His parting words to me after I elected to go with biochemo were that he promised not to use the word "experimental" when talking with my insurance company.)  I don't have a clue whether biochemo is an option for a patient with kidney and liver disease, but there's nothing to lose by looking into it.  Best wishes to you and your husband.  I've blogged about the lighter side of my adventures with biochemo etc. at http://www.hotelmelanoma.blogspot.com.   Take care, Rich

Lee,

My father was diagnosed with stage 3 melanoma after his initial surgery. His insurance did not cover clinical trails in full but we found a hospital conducting the trail, they ended up accepted what our insurance (blue cross) as payment in full. Physicians/Hospitals can write off these instances as "bad debt" and receive tax benefits that allow them to recoup this money. Please let me know if you ave any questions or need additional information.

Thanks,

Amber O'Neal Hulin

Lee,

My father was diagnosed with stage 3 melanoma after his initial surgery. His insurance did not cover clinical trails in full but we found a hospital conducting the trail, they ended up accepted what our insurance (blue cross) as payment in full. Physicians/Hospitals can write off these instances as "bad debt" and receive tax benefits that allow them to recoup this money. Please let me know if you ave any questions or need additional information.

Thanks,

Amber O'Neal Hulin