Treatment Options – Advice needed!!

Is he seeing a melanoma specialist?  If not, he may not be hearing about all of the options.  For example, there are trials underway for Ipilimumab as a Stage III treatment.

I was diagnosed with Stage IIIc melanoma (14 malignant nodes) in 2003 and opted for biochemotherapy treatment (which includes Interferon and IL-2) at the University of Colorado Cancer Center.  Today I'm healthy and showing no evident disease.  I've blogged about the lighter side of the journey at http://www.hotelmelanoma.blogspot.com.   UCCC (and other cancer centers) continues to recommend biochemotherapy as an option for some patients because they are seeing good results from this treatment.  It's rough stuff but a 30-year old (I was 50) can sure handle it if he's otherwise healthy.

Best wishes and prayers for you and your son.

Is he seeing a melanoma specialist?  If not, he may not be hearing about all of the options.  For example, there are trials underway for Ipilimumab as a Stage III treatment.

I was diagnosed with Stage IIIc melanoma (14 malignant nodes) in 2003 and opted for biochemotherapy treatment (which includes Interferon and IL-2) at the University of Colorado Cancer Center.  Today I'm healthy and showing no evident disease.  I've blogged about the lighter side of the journey at http://www.hotelmelanoma.blogspot.com.   UCCC (and other cancer centers) continues to recommend biochemotherapy as an option for some patients because they are seeing good results from this treatment.  It's rough stuff but a 30-year old (I was 50) can sure handle it if he's otherwise healthy.

Best wishes and prayers for you and your son.

Hi Jeff's Mom,

I agree with the others. I don't think you've been given all the options available, nor the best ones. I didn't do INF, but I did do GM-CSF (Leukine) and had disease progression. I recently did 12 weeks of ipi, and all my sub-q tumors are gone, and my lung tumor has shrunk. There are also chemo, bio-chemo, BRAF, and other immunotherapy treatments. Go to http://www.clinicaltrials.org and check out what's available that Jeff would qualify for. Good luck in your search for the best option.

Hugs

Sharyn

Hi Jeff's Mom,

I agree with the others. I don't think you've been given all the options available, nor the best ones. I didn't do INF, but I did do GM-CSF (Leukine) and had disease progression. I recently did 12 weeks of ipi, and all my sub-q tumors are gone, and my lung tumor has shrunk. There are also chemo, bio-chemo, BRAF, and other immunotherapy treatments. Go to http://www.clinicaltrials.org and check out what's available that Jeff would qualify for. Good luck in your search for the best option.

Hugs

Sharyn

Hello,

When I was diagnosed with stage IIIb (Sept 2009), I was 37 with a 2.5 year old boy running around.

I was offered either interferon or a double blind study with ipi.

After reading much information about interferon I decided against it. For me it reads like feeling lousy for a year, to postpone possible recurrences with a year.

So I read into the ipi trial and decided to take that road.
One of the most important things for me is the regular follow up, including the scans. Even with the placebo arm you do get that.
After 4 infusions it was obvious I was on the ipi arm (I had a colitis).
After 8 infusions I decided to end the trial because of to many side effects (exhaustion, and an enlarged spleen).
I will still keep getting my 3-monthly scans.

If I had to make the same choice again, I would do it again.
Nobody knows if ipi will work or not, and this way at least you have the 3 months scans AND you can have check ups whenever you feel something!

Good luck with the decision, it's not easy
 

Hello,

When I was diagnosed with stage IIIb (Sept 2009), I was 37 with a 2.5 year old boy running around.

I was offered either interferon or a double blind study with ipi.

After reading much information about interferon I decided against it. For me it reads like feeling lousy for a year, to postpone possible recurrences with a year.

So I read into the ipi trial and decided to take that road.
One of the most important things for me is the regular follow up, including the scans. Even with the placebo arm you do get that.
After 4 infusions it was obvious I was on the ipi arm (I had a colitis).
After 8 infusions I decided to end the trial because of to many side effects (exhaustion, and an enlarged spleen).
I will still keep getting my 3-monthly scans.

If I had to make the same choice again, I would do it again.
Nobody knows if ipi will work or not, and this way at least you have the 3 months scans AND you can have check ups whenever you feel something!

Good luck with the decision, it's not easy
 

Hi Jeff's mom,

First of all, I am so sorry he is going through this. In my situation, I had lymph node metastasis and thought I was going to stage III, well… wrong. I had a node on my lung at the same time I was going through my radical neck dissection. I am in California. My oncologist prescribed 18 months of Biochemotherapy w/ IL-2. I gave myself injections( in between hospital stays) with IL-2 and Leukine.

It is not an easy treatment, but I am here to say that I am 4 years NED (I will be scanned in May). If I make it to November of this year with NED, I will hit my 5 year milestone!

There are so many different protocols I cannot believe it, but that was the ONLY choice given to me at the time, otherwise I was given 6 to 9 months to live. I would do this again in a heartbeat. I know it has a small response rate (I was told 12%).

I also had my tumor genetically tested for mutations and it was negative for all the common melanomas.

I know that this will be his choice, but I just wanted to share my positive experience.

Please keep us posted on Jeff,

Hugs,

Suzanne

Hi Jeff's mom,

First of all, I am so sorry he is going through this. In my situation, I had lymph node metastasis and thought I was going to stage III, well… wrong. I had a node on my lung at the same time I was going through my radical neck dissection. I am in California. My oncologist prescribed 18 months of Biochemotherapy w/ IL-2. I gave myself injections( in between hospital stays) with IL-2 and Leukine.

It is not an easy treatment, but I am here to say that I am 4 years NED (I will be scanned in May). If I make it to November of this year with NED, I will hit my 5 year milestone!

There are so many different protocols I cannot believe it, but that was the ONLY choice given to me at the time, otherwise I was given 6 to 9 months to live. I would do this again in a heartbeat. I know it has a small response rate (I was told 12%).

I also had my tumor genetically tested for mutations and it was negative for all the common melanomas.

I know that this will be his choice, but I just wanted to share my positive experience.

Please keep us posted on Jeff,

Hugs,

Suzanne

Hi Jeff's mom,

First of all, I am so sorry he is going through this. In my situation, I had lymph node metastasis and thought I was going to stage III, well… wrong. I had a node on my lung at the same time I was going through my radical neck dissection. I am in California. My oncologist prescribed 18 months of Biochemotherapy w/ IL-2. I gave myself injections( in between hospital stays) with IL-2 and Leukine.

It is not an easy treatment, but I am here to say that I am 4 years NED (I will be scanned in May). If I make it to November of this year with NED, I will hit my 5 year milestone!

There are so many different protocols I cannot believe it, but that was the ONLY choice given to me at the time, otherwise I was given 6 to 9 months to live. I would do this again in a heartbeat. I know it has a small response rate (I was told 12%).

I also had my tumor genetically tested for mutations and it was negative for all the common melanomas.

I know that this will be his choice, but I just wanted to share my positive experience.

Please keep us posted on Jeff,

Hugs,

Suzanne

Hi Jeff's mom,

First of all, I am so sorry he is going through this. In my situation, I had lymph node metastasis and thought I was going to stage III, well… wrong. I had a node on my lung at the same time I was going through my radical neck dissection. I am in California. My oncologist prescribed 18 months of Biochemotherapy w/ IL-2. I gave myself injections( in between hospital stays) with IL-2 and Leukine.

It is not an easy treatment, but I am here to say that I am 4 years NED (I will be scanned in May). If I make it to November of this year with NED, I will hit my 5 year milestone!

There are so many different protocols I cannot believe it, but that was the ONLY choice given to me at the time, otherwise I was given 6 to 9 months to live. I would do this again in a heartbeat. I know it has a small response rate (I was told 12%).

I also had my tumor genetically tested for mutations and it was negative for all the common melanomas.

I know that this will be his choice, but I just wanted to share my positive experience.

Please keep us posted on Jeff,

Hugs,

Suzanne

Jeff's Mom, I live in Shorewood, by Plainfield, Il.  My sister has stage 4 melanoma in N. J.  (in fact, I am with her now) and she just started the E7080 trial.  I see Dr. Rhodes at Rush, who is the head of the Melanoma Surveillance Clinic.  In my search of the internet for information for my sister, I came across a doctor Block at the "Block" clinic in Chicago, who has had success with melanoma.  I've never heard of it before, but maybe take a look at that and see what that's about.  Good luck to your son.  I will keep him in my prayers. 

Jeff's Mom, I live in Shorewood, by Plainfield, Il.  My sister has stage 4 melanoma in N. J.  (in fact, I am with her now) and she just started the E7080 trial.  I see Dr. Rhodes at Rush, who is the head of the Melanoma Surveillance Clinic.  In my search of the internet for information for my sister, I came across a doctor Block at the "Block" clinic in Chicago, who has had success with melanoma.  I've never heard of it before, but maybe take a look at that and see what that's about.  Good luck to your son.  I will keep him in my prayers. 

I'm sorry your son is going through all of this.

After surgery (partial parotid/neck dissection, and staging at IIIA), I chose watch and wait the first time in 2003, and had five good disease-free years.

After a recurrance, in 2008, and a full parotid/neck dissection, I was offered a choice between an Ipilimumab double-blind study (versus a placebo), interferon, or radiation. (One could not do the radiation first and still remain eligible for the Ipi study). I chose radiation, as it has been shown to decrease the likelihood of local recurrances.

Being radiated to the face/neck is painless in itself, but the side effects (difficulty eating in particular) make it an unpleasant trip. If your son chooses to do radiation, I would be happy to share experiences and a few things that I found helpful. He should be proactive, too, in keeping his shoulder moving and pursuing physical therapy.

It looks like Ipi (Yervoy) is going to get approved by the FDA this week, and that may change the options. 

Paul

I'm sorry your son is going through all of this.

After surgery (partial parotid/neck dissection, and staging at IIIA), I chose watch and wait the first time in 2003, and had five good disease-free years.

After a recurrance, in 2008, and a full parotid/neck dissection, I was offered a choice between an Ipilimumab double-blind study (versus a placebo), interferon, or radiation. (One could not do the radiation first and still remain eligible for the Ipi study). I chose radiation, as it has been shown to decrease the likelihood of local recurrances.

Being radiated to the face/neck is painless in itself, but the side effects (difficulty eating in particular) make it an unpleasant trip. If your son chooses to do radiation, I would be happy to share experiences and a few things that I found helpful. He should be proactive, too, in keeping his shoulder moving and pursuing physical therapy.

It looks like Ipi (Yervoy) is going to get approved by the FDA this week, and that may change the options. 

Paul

I'm happy to share anything about my experiences that might be of use to your son. He should feel free to contact me at [email protected] if I can help with anything. 

I had slight paralysis after the first parotidectomy, something like botox on one side of my face/forehead, and it went away entirely after about a year. My recurrence five years later was in the facial nerve, so I have paralysis on that side of my face now. At first it was quite noticeable (like Bells Palsy), and now, two years later, most people wouldn't notice it without looking closely. This is to say that recovery of facial/neck mobility can be remarkable, even where the nerve itself has been removed.

I started radiation a month after surgery. My understanding was that, since the idea is to kill micrometastises that surgery might have missed, radiation would be started as soon as I was recovered enough for it. With full respect to those who have chosen Interferon, my own research suggested that it offers no overall survival benefit, and only promises to delay the time of recurrance in 1/10 who take it. I've never seen a good explanation for why/how it would delay recurrances but not lengthen survival time. Maybe someone on this board knows. Leukine seems to perform better, but for some reason (maybe because it's hard to get insurance companies to pay for it), few places prescribe it. In my brief experience with it, it was easily tolerated. There also seem to be a number of new or in-the-pipelines drugs, some of which are not currently frontline options. If your son does radiation/recovery, the options might look different.

From what I've read, and I'm sure this is true for all of the therapies, the effects of radiation differ greatly from person to person. I was presented the option of five treatments or thirty treatments (over six weeks), and did the later. The biggest issue for me was ulcerations in the throat, which made it painful to eat, so the challenge is find ways to get enough calories, though different high-calorie shakes. My doctor gave me a solution to numb the throat before eating, and I'm sure you're son will be offered that. People typically get a severe "burn" too toward the end of the course, and I think you'd find a lot of postings on different creams that people use, by searching the archive on this site. It's a great resource. The throat problems for me continued for a few weeks after the treatment ended (it was described to me as hitting the breaks on a train–it keeps skidding along the tracks).

I have had several further recurrances, but everyone's experience with this disease differs, and hopefully your son will remain NED. I'd not get caught up in the statistics; all the newspaper articles on imminent death can be pretty discouraging, and there's many people on this board who have been living and working full time (as do I) with this disease for a long time. I do have some lingering pain issues with neck and shoulder, but it's gotten a lot better, and perhaps could have been better if I'd been more vigilant up front with the rehab.

Paul

ps. If down the line your son finds himself sweating on the surgery side of his face after eating, it's called "Frey's Syndrome," and is fairly normal, just an unusual thing that was never explained to me until I mentioned it to my dentist.

I'm happy to share anything about my experiences that might be of use to your son. He should feel free to contact me at [email protected] if I can help with anything. 

I had slight paralysis after the first parotidectomy, something like botox on one side of my face/forehead, and it went away entirely after about a year. My recurrence five years later was in the facial nerve, so I have paralysis on that side of my face now. At first it was quite noticeable (like Bells Palsy), and now, two years later, most people wouldn't notice it without looking closely. This is to say that recovery of facial/neck mobility can be remarkable, even where the nerve itself has been removed.

I started radiation a month after surgery. My understanding was that, since the idea is to kill micrometastises that surgery might have missed, radiation would be started as soon as I was recovered enough for it. With full respect to those who have chosen Interferon, my own research suggested that it offers no overall survival benefit, and only promises to delay the time of recurrance in 1/10 who take it. I've never seen a good explanation for why/how it would delay recurrances but not lengthen survival time. Maybe someone on this board knows. Leukine seems to perform better, but for some reason (maybe because it's hard to get insurance companies to pay for it), few places prescribe it. In my brief experience with it, it was easily tolerated. There also seem to be a number of new or in-the-pipelines drugs, some of which are not currently frontline options. If your son does radiation/recovery, the options might look different.

From what I've read, and I'm sure this is true for all of the therapies, the effects of radiation differ greatly from person to person. I was presented the option of five treatments or thirty treatments (over six weeks), and did the later. The biggest issue for me was ulcerations in the throat, which made it painful to eat, so the challenge is find ways to get enough calories, though different high-calorie shakes. My doctor gave me a solution to numb the throat before eating, and I'm sure you're son will be offered that. People typically get a severe "burn" too toward the end of the course, and I think you'd find a lot of postings on different creams that people use, by searching the archive on this site. It's a great resource. The throat problems for me continued for a few weeks after the treatment ended (it was described to me as hitting the breaks on a train–it keeps skidding along the tracks).

I have had several further recurrances, but everyone's experience with this disease differs, and hopefully your son will remain NED. I'd not get caught up in the statistics; all the newspaper articles on imminent death can be pretty discouraging, and there's many people on this board who have been living and working full time (as do I) with this disease for a long time. I do have some lingering pain issues with neck and shoulder, but it's gotten a lot better, and perhaps could have been better if I'd been more vigilant up front with the rehab.

Paul

ps. If down the line your son finds himself sweating on the surgery side of his face after eating, it's called "Frey's Syndrome," and is fairly normal, just an unusual thing that was never explained to me until I mentioned it to my dentist.