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Treatment Options – Advice needed!!

Forums General Melanoma Community Treatment Options – Advice needed!!

  • Post
    s Mom
    Participant

    Good afternoon,

    My 30 year old son was recently diagnosed with STAGE 3c malignant melanoma – you can read his story on my profile page.  He is now recovering from his second surgery and has been given two options for therapy before he starts radiation:  interferon or leukine.

    Help!!  Any advice would be greatly appreciated.  What were your experiences like if you were treated with either of these two therapies?  What can he expect?  Thanks in advance.

     

    Jeff's MOM

    Good afternoon,

    My 30 year old son was recently diagnosed with STAGE 3c malignant melanoma – you can read his story on my profile page.  He is now recovering from his second surgery and has been given two options for therapy before he starts radiation:  interferon or leukine.

    Help!!  Any advice would be greatly appreciated.  What were your experiences like if you were treated with either of these two therapies?  What can he expect?  Thanks in advance.

     

    Jeff's MOM

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  • Replies
      RMcLegal
      Participant

      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.

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        Becky
        Participant

        Others may chime in on the pros and cons of both of those therapies but I just want to say that my son was 21 when he did a year of interferon. The first month was rough but after that he went back to college full time and was able to manage pretty well. If your son is healthy to begin with, as mine was, i think youth is on his side (yes 30 is young!) when it comes to magaging side effects.

        take care..I read your profile, it sound like you guys have been through a lot!

        Becky

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        Becky
        Participant

        Others may chime in on the pros and cons of both of those therapies but I just want to say that my son was 21 when he did a year of interferon. The first month was rough but after that he went back to college full time and was able to manage pretty well. If your son is healthy to begin with, as mine was, i think youth is on his side (yes 30 is young!) when it comes to magaging side effects.

        take care..I read your profile, it sound like you guys have been through a lot!

        Becky

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      RMcLegal
      Participant

      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.

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      Sharyn
      Participant

      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

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      Sharyn
      Participant

      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

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      s Mom
      Participant

      Thank you so much for your responses.  Jeff's oncologist is the head of the melanoma department at RUSH in Chicago and is very well respected.  Should he go elsewhere?  He did call Dr. Rosenberg at NIH in Betheseda for his opinion about treatment options.  He recommended wait and see.

      Do any of you know if there are any other places close to Chicago that just treat melanoma?  He had second opinions from Mayo and University of Chicago, and their recommendations were pretty much the standard (leukine, Interferon, wait and see, MAGE clinical trial).  Personally, I am worried about Interferon's side effects, but it looks like it might be the option that delays recurrence (from everything I've read the percentiles are small, but if he responds, then the side effects are worth it).   I've read about a lot of good news on this forum about leukine (seems to stave off tumor progression, but scientific studies don't back this up).  We want him to be NED for a long, long, long time like many of you :)

      He and his beautiful wife are having baby #3 at the end of April – they are going to bank the baby's cord blood and tissue for stem cells.  Maybe there will be some kind of cure in the future using these cells.  Unfortunately, his treatment option time frame is closing and he has to make a decision soon.  The baby is due when he would be finishing his first high dose of Interferon.  

      Clinical trials seem so scary – it's hard to think of the placebo arm.  Not sure if he would qualify for the STAGE 3 IPI one (his tumors have been resected).  Wait and see is also really scary.   

      This board has been so informative – I read it everyday.  Thanks you again for all the information.  We'll keep reading and learning as much as we can.  You are all heroes  – your strength in the face of this disease is inspirational (so is Jeff's)!!

      Jeff's MOM

       

       

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      s Mom
      Participant

      Thank you so much for your responses.  Jeff's oncologist is the head of the melanoma department at RUSH in Chicago and is very well respected.  Should he go elsewhere?  He did call Dr. Rosenberg at NIH in Betheseda for his opinion about treatment options.  He recommended wait and see.

      Do any of you know if there are any other places close to Chicago that just treat melanoma?  He had second opinions from Mayo and University of Chicago, and their recommendations were pretty much the standard (leukine, Interferon, wait and see, MAGE clinical trial).  Personally, I am worried about Interferon's side effects, but it looks like it might be the option that delays recurrence (from everything I've read the percentiles are small, but if he responds, then the side effects are worth it).   I've read about a lot of good news on this forum about leukine (seems to stave off tumor progression, but scientific studies don't back this up).  We want him to be NED for a long, long, long time like many of you :)

      He and his beautiful wife are having baby #3 at the end of April – they are going to bank the baby's cord blood and tissue for stem cells.  Maybe there will be some kind of cure in the future using these cells.  Unfortunately, his treatment option time frame is closing and he has to make a decision soon.  The baby is due when he would be finishing his first high dose of Interferon.  

      Clinical trials seem so scary – it's hard to think of the placebo arm.  Not sure if he would qualify for the STAGE 3 IPI one (his tumors have been resected).  Wait and see is also really scary.   

      This board has been so informative – I read it everyday.  Thanks you again for all the information.  We'll keep reading and learning as much as we can.  You are all heroes  – your strength in the face of this disease is inspirational (so is Jeff's)!!

      Jeff's MOM

       

       

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      s Mom
      Participant

      Thank you so much for your responses.  Jeff's oncologist is the head of the melanoma department at RUSH in Chicago and is very well respected.  Should he go elsewhere?  He did call Dr. Rosenberg at NIH in Betheseda for his opinion about treatment options.  He recommended wait and see.

      Do any of you know if there are any other places close to Chicago that just treat melanoma?  He had second opinions from Mayo and University of Chicago, and their recommendations were pretty much the standard (leukine, Interferon, wait and see, MAGE clinical trial).  Personally, I am worried about Interferon's side effects, but it looks like it might be the option that delays recurrence (from everything I've read the percentiles are small, but if he responds, then the side effects are worth it).   I've read about a lot of good news on this forum about leukine (seems to stave off tumor progression, but scientific studies don't back this up).  We want him to be NED for a long, long, long time like many of you :)

      He and his beautiful wife are having baby #3 at the end of April – they are going to bank the baby's cord blood and tissue for stem cells.  Maybe there will be some kind of cure in the future using these cells.  Unfortunately, his treatment option time frame is closing and he has to make a decision soon.  The baby is due when he would be finishing his first high dose of Interferon.  

      Clinical trials seem so scary – it's hard to think of the placebo arm.  Not sure if he would qualify for the STAGE 3 IPI one (his tumors have been resected).  Wait and see is also really scary.   

      This board has been so informative – I read it everyday.  Thanks you again for all the information.  We'll keep reading and learning as much as we can.  You are all heroes  – your strength in the face of this disease is inspirational (so is Jeff's)!!

      Jeff's MOM

       

       

      Loading spinner
      s Mom
      Participant

      Thank you so much for your responses.  Jeff's oncologist is the head of the melanoma department at RUSH in Chicago and is very well respected.  Should he go elsewhere?  He did call Dr. Rosenberg at NIH in Betheseda for his opinion about treatment options.  He recommended wait and see.

      Do any of you know if there are any other places close to Chicago that just treat melanoma?  He had second opinions from Mayo and University of Chicago, and their recommendations were pretty much the standard (leukine, Interferon, wait and see, MAGE clinical trial).  Personally, I am worried about Interferon's side effects, but it looks like it might be the option that delays recurrence (from everything I've read the percentiles are small, but if he responds, then the side effects are worth it).   I've read about a lot of good news on this forum about leukine (seems to stave off tumor progression, but scientific studies don't back this up).  We want him to be NED for a long, long, long time like many of you :)

      He and his beautiful wife are having baby #3 at the end of April – they are going to bank the baby's cord blood and tissue for stem cells.  Maybe there will be some kind of cure in the future using these cells.  Unfortunately, his treatment option time frame is closing and he has to make a decision soon.  The baby is due when he would be finishing his first high dose of Interferon.  

      Clinical trials seem so scary – it's hard to think of the placebo arm.  Not sure if he would qualify for the STAGE 3 IPI one (his tumors have been resected).  Wait and see is also really scary.   

      This board has been so informative – I read it everyday.  Thanks you again for all the information.  We'll keep reading and learning as much as we can.  You are all heroes  – your strength in the face of this disease is inspirational (so is Jeff's)!!

      Jeff's MOM

       

       

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      swissie
      Participant

      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
       

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      swissie
      Participant

      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
       

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      SuzannefromCA
      Participant

      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

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      SuzannefromCA
      Participant

      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

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      SuzannefromCA
      Participant

      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

      Loading spinner
      SuzannefromCA
      Participant

      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

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      For My Sister
      Participant

      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. 

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      For My Sister
      Participant

      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. 

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      paul
      Participant

      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

       

       

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      paul
      Participant

      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

       

       

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      s Mom
      Participant

      I feel blessed to have found this site… thank you all so much for sharing your stories and your wisdom.  It has been pretty rough these last two months, but Jeff is an amazing person with such strength.  I am not just saying that because he's my son…he really is strong for being so young and having to deal with all of this.  His wife is pretty amazing, too (she's 8 months pregnant)!  I want the best treatment for him and finding this site is really helping me (and my whole family), so thank you all again. 

      * Paul, it sounds like you had the same surgery as Jeff.  Was your melanoma confined to the lymph nodes in the parotid?  Where was your recurrence (if you don't mind me asking)?  How was your recovery from the second surgery?  Jeff had 2 parotidectomies within a 1 month time frame and is healing very well.  The ENT at Mayo said he will have very slight paralysis (it's very slight right now) – he looks real good!   Swelling is way down and he didn't need a tissue graft.  They just used the muscles in his neck to fill in the cavity where the gland was (after they did the full neck dissection).    

      How was radiation and what should Jeff expect as far as side effects?  What type is used and how is it administered?   What side effects can Jeff expect during radiation treatment?  What Jeff will have radiation after his first dose of immunotherapy (whatever treatment course he chooses).  He has until April 4th to make his decision on that front, and that is what he is unsure about.  But Mayo, U of C  and RUSH all recommend radiation after an initial course of immunotherapy.  Maybe the treatment protocol will change if IPI gets approved before Jeff's April 4th deadline?? 

      Please – any information that you are willing to share would be greatly appreciated – it sounds like you might have had a similar experience.     Sorry about all the questions…don't feel obligated to respond if I am being too intrusive.  But if you are willing to share, I would be most appreciative. 

      Jeff's MOM

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      s Mom
      Participant

      I feel blessed to have found this site… thank you all so much for sharing your stories and your wisdom.  It has been pretty rough these last two months, but Jeff is an amazing person with such strength.  I am not just saying that because he's my son…he really is strong for being so young and having to deal with all of this.  His wife is pretty amazing, too (she's 8 months pregnant)!  I want the best treatment for him and finding this site is really helping me (and my whole family), so thank you all again. 

      * Paul, it sounds like you had the same surgery as Jeff.  Was your melanoma confined to the lymph nodes in the parotid?  Where was your recurrence (if you don't mind me asking)?  How was your recovery from the second surgery?  Jeff had 2 parotidectomies within a 1 month time frame and is healing very well.  The ENT at Mayo said he will have very slight paralysis (it's very slight right now) – he looks real good!   Swelling is way down and he didn't need a tissue graft.  They just used the muscles in his neck to fill in the cavity where the gland was (after they did the full neck dissection).    

      How was radiation and what should Jeff expect as far as side effects?  What type is used and how is it administered?   What side effects can Jeff expect during radiation treatment?  What Jeff will have radiation after his first dose of immunotherapy (whatever treatment course he chooses).  He has until April 4th to make his decision on that front, and that is what he is unsure about.  But Mayo, U of C  and RUSH all recommend radiation after an initial course of immunotherapy.  Maybe the treatment protocol will change if IPI gets approved before Jeff's April 4th deadline?? 

      Please – any information that you are willing to share would be greatly appreciated – it sounds like you might have had a similar experience.     Sorry about all the questions…don't feel obligated to respond if I am being too intrusive.  But if you are willing to share, I would be most appreciative. 

      Jeff's MOM

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      paul
      Participant

      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.

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      paul
      Participant

      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.

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