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Interferon – any other choices?

Forums General Melanoma Community Interferon – any other choices?

  • Post
    Melanoma Mom
    Participant

    Our 14 year old received the wonderful news that SNB was clear! They are suggesting the year of Interferon. I know from limited reading that this is not foolproof by any means, but is most likely better than the "wait and see" approach. Since he is considered NED, I assume there is no other options/trials out there that I should be looking into at this time? I'm afraid some trails will disqualify him right off the bat because of his age. 

    Any thoughts and suggestions are greatly appreciated! 

    Our 14 year old received the wonderful news that SNB was clear! They are suggesting the year of Interferon. I know from limited reading that this is not foolproof by any means, but is most likely better than the "wait and see" approach. Since he is considered NED, I assume there is no other options/trials out there that I should be looking into at this time? I'm afraid some trails will disqualify him right off the bat because of his age. 

    Any thoughts and suggestions are greatly appreciated! 

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  • Replies
      ChristineL
      Participant

      What is is staging now, based on clear nodes? 

      That will help to determine what his options are. 

      Thanks,

      ChristineL

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        Melanoma Mom
        Participant

        Well, believe it or not, the Oncologist was very leery of giving a stage because our son's case is very, very unusual. Without going into crazy-detail, he had two spots removed from his skin, one on his inner arm and one on his torso, at the same time as the tumor. These spots had come up in July and looked festered …. the Dermatologist at Maine Med froze them off so no one at DF has any idea what they originally looked like or what their true genetic make-up was, as the freezing completely changed/altered them. The biopsy results truly surprised them when the spots came back as "showing tendencies" of Melanoma.

        They had a large group of Oncologists and Pathologists from DF and other hospitals meet and discuss his specific case. Two of the three main Dermapathologists feel they are not related to the melanoma, while one felt they are. Our Pediatric Oncologist sides with the idea that they are not related, as his nodes are clear and he feels the growths would have come from underneath the skin vs. a growth that was only sitting on top of the skin. 

        Anyway, the Oncologist continued to stress that while the main tumor was large – 14 mm – that other factors went against that particular merit. I know it sounds a bit crazy that he didn't give us an exact stage, but I just got the impression that they feel they are dealing with almost a never-before-seen situation because of his age and the debate with these extra spots. 

        I decided not to push any further, after asking twice for a staging answer, and I had done my research so they were rather impressed that I knew so much about Interferon and other treatments. (Of course I embarrassed the hell out of my son, but he is a teenager, after all! Anytime I open my mouth, it's embarrassing! LOL) We will meet with Dr. Hodi in the near future and maybe I will make him nail down a stage. As a stage 4 thyroid survivor, I know that staging makes a difference, but doesn't always dictate the end result. 

        So, our super hero 14 year old, is feeling adamant about trying Interferon … he even asked if he could start this coming Monday! So the "wait and see" approach does not seem acceptable to him. The Oncologist said  he suggested that we try it, but would not force the issue and would let us decide on trying it vs. no treatment. He said if nodes had been involved, he would have been more insistent that we consider it. We asked him what he would do for his own son and he said, "Interferon". 

        While I don't feel we need to make a rush decision, I do believe I see where this is headed so I am starting to put the pieces together for where we will go here in Maine for treatment. Our youngest child is treated for a blood disorder by a Hematologist/Oncologist at Maine Children's Cancer Center in Scarborough and I am familiar with that physician so I plan to call her today to talk things over.

        How's that for a longwinded answer?!? 

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        dian in spokane
        Participant

        I think it's a great idea for you to talk to that doctor at Dana Farber, but I also think that the fact that your son is so adamant about trying interferon CANNOT be ignored. He's young, but it's still his life, and the fact that he really wants to try it would make a huge difference to me. And.. it's likely you'll get the same advice there. There aren't many treatment options for melanoma, and even fewer for those under 18.

        It's wonderful that, with such a deep primary, he's not had any spread to his lymph system. But that deep a primary is certainly of concern.

        When I did interferon back in 2003, one of the things that really got me through it all was BELLA!~! Bella was doing interferon the same time as me, and she was 3 yrs old. Over the years, we've had a variety of young children who have done interferon(really their parents posting), and I believe the claims that young people tolerate it better.

        You might want to talk a little to Becky, who posted the good results about her son Ben's scans yesterday. Ben was only 18 or 19 when he did his interferon, and a college student.

        While it's true enough that people the age of your son don't get melanoma, they still DO get it. Everyone's melanoma is kind of unique for that matter. MINE certainly has broken all the rules.

        Good luck. I cannot even imagine how frightened I would be if one of my children had to face something like this. I hope all the best for your son.

        dian in spokane

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        dian in spokane
        Participant

        I think it's a great idea for you to talk to that doctor at Dana Farber, but I also think that the fact that your son is so adamant about trying interferon CANNOT be ignored. He's young, but it's still his life, and the fact that he really wants to try it would make a huge difference to me. And.. it's likely you'll get the same advice there. There aren't many treatment options for melanoma, and even fewer for those under 18.

        It's wonderful that, with such a deep primary, he's not had any spread to his lymph system. But that deep a primary is certainly of concern.

        When I did interferon back in 2003, one of the things that really got me through it all was BELLA!~! Bella was doing interferon the same time as me, and she was 3 yrs old. Over the years, we've had a variety of young children who have done interferon(really their parents posting), and I believe the claims that young people tolerate it better.

        You might want to talk a little to Becky, who posted the good results about her son Ben's scans yesterday. Ben was only 18 or 19 when he did his interferon, and a college student.

        While it's true enough that people the age of your son don't get melanoma, they still DO get it. Everyone's melanoma is kind of unique for that matter. MINE certainly has broken all the rules.

        Good luck. I cannot even imagine how frightened I would be if one of my children had to face something like this. I hope all the best for your son.

        dian in spokane

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        Melanoma Mom
        Participant

        Well, believe it or not, the Oncologist was very leery of giving a stage because our son's case is very, very unusual. Without going into crazy-detail, he had two spots removed from his skin, one on his inner arm and one on his torso, at the same time as the tumor. These spots had come up in July and looked festered …. the Dermatologist at Maine Med froze them off so no one at DF has any idea what they originally looked like or what their true genetic make-up was, as the freezing completely changed/altered them. The biopsy results truly surprised them when the spots came back as "showing tendencies" of Melanoma.

        They had a large group of Oncologists and Pathologists from DF and other hospitals meet and discuss his specific case. Two of the three main Dermapathologists feel they are not related to the melanoma, while one felt they are. Our Pediatric Oncologist sides with the idea that they are not related, as his nodes are clear and he feels the growths would have come from underneath the skin vs. a growth that was only sitting on top of the skin. 

        Anyway, the Oncologist continued to stress that while the main tumor was large – 14 mm – that other factors went against that particular merit. I know it sounds a bit crazy that he didn't give us an exact stage, but I just got the impression that they feel they are dealing with almost a never-before-seen situation because of his age and the debate with these extra spots. 

        I decided not to push any further, after asking twice for a staging answer, and I had done my research so they were rather impressed that I knew so much about Interferon and other treatments. (Of course I embarrassed the hell out of my son, but he is a teenager, after all! Anytime I open my mouth, it's embarrassing! LOL) We will meet with Dr. Hodi in the near future and maybe I will make him nail down a stage. As a stage 4 thyroid survivor, I know that staging makes a difference, but doesn't always dictate the end result. 

        So, our super hero 14 year old, is feeling adamant about trying Interferon … he even asked if he could start this coming Monday! So the "wait and see" approach does not seem acceptable to him. The Oncologist said  he suggested that we try it, but would not force the issue and would let us decide on trying it vs. no treatment. He said if nodes had been involved, he would have been more insistent that we consider it. We asked him what he would do for his own son and he said, "Interferon". 

        While I don't feel we need to make a rush decision, I do believe I see where this is headed so I am starting to put the pieces together for where we will go here in Maine for treatment. Our youngest child is treated for a blood disorder by a Hematologist/Oncologist at Maine Children's Cancer Center in Scarborough and I am familiar with that physician so I plan to call her today to talk things over.

        How's that for a longwinded answer?!? 

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      ChristineL
      Participant

      What is is staging now, based on clear nodes? 

      That will help to determine what his options are. 

      Thanks,

      ChristineL

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      Janner
      Participant

      You've never said how deep the original lesion was.  I'm assuming it was fairly significant to warrant a doctor suggesting Interferon.  Interferon is controversial at best.  Lots of side effects with only about 10% benefiting.  Benefits seem to increase time until recurrence, but not overall survival.  Interferon is typically used for stage III individuals and your son is not stage III, he is stage I or II (this is where knowning the depth would help us).  Some places give Interferon for stage II, but that is even more controversial.  Interferon is never offered for stage I.  There are not many clinical trials out there for stage II patients.  However, most clinical trials will not accept someone under age 18, so your options are even more limited.  GM-CSF has been given in place of Interferon as an adjuvant therapy.  It is much easier to tolerate.  However, I think someone posted a recent study saying it didn't prove to be effective (I may be wrong on that so it still bears researching). 

      Typically, Stage I and stage II are just "monitored" with no active treatment after the wide excision.  That is certainly a viable option for your son.  Interferon is another option albeit quite toxic.  However, it is also something you could discontinue if the effects are too toxic.  There has been a study done that says the one month induction phase is as effective as the entire year regimen.  So that is something else you could consider – just doing the 1 month high dose and skip the rest.

      There are no good answers here, just weighing options to see what you can live with. 

      Best wishes to you and your son!

      Janner

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        Melanoma Mom
        Participant

        Thank you, Janner. We were typing at the same time so some of your questions can be answered in my above post. Definitely a deep lesion. 

        I am going to make an appt. with Dr. Hodi at Dana-Farber and pick his brain before making any decisions. My son is very adamant about trying it so I do have to give his opinion some credit. They named off every scary side effect and he still was wanting to start ASAP. He's a fighter!

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        Melanoma Mom
        Participant

        Thank you, Janner. We were typing at the same time so some of your questions can be answered in my above post. Definitely a deep lesion. 

        I am going to make an appt. with Dr. Hodi at Dana-Farber and pick his brain before making any decisions. My son is very adamant about trying it so I do have to give his opinion some credit. They named off every scary side effect and he still was wanting to start ASAP. He's a fighter!

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      Janner
      Participant

      You've never said how deep the original lesion was.  I'm assuming it was fairly significant to warrant a doctor suggesting Interferon.  Interferon is controversial at best.  Lots of side effects with only about 10% benefiting.  Benefits seem to increase time until recurrence, but not overall survival.  Interferon is typically used for stage III individuals and your son is not stage III, he is stage I or II (this is where knowning the depth would help us).  Some places give Interferon for stage II, but that is even more controversial.  Interferon is never offered for stage I.  There are not many clinical trials out there for stage II patients.  However, most clinical trials will not accept someone under age 18, so your options are even more limited.  GM-CSF has been given in place of Interferon as an adjuvant therapy.  It is much easier to tolerate.  However, I think someone posted a recent study saying it didn't prove to be effective (I may be wrong on that so it still bears researching). 

      Typically, Stage I and stage II are just "monitored" with no active treatment after the wide excision.  That is certainly a viable option for your son.  Interferon is another option albeit quite toxic.  However, it is also something you could discontinue if the effects are too toxic.  There has been a study done that says the one month induction phase is as effective as the entire year regimen.  So that is something else you could consider – just doing the 1 month high dose and skip the rest.

      There are no good answers here, just weighing options to see what you can live with. 

      Best wishes to you and your son!

      Janner

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      kateboston
      Participant

      It sounds like b/c of the large size (14mm) of your son's melanoma that they are suggesting Interferon. I am currently into my 3rd month of Interferon and to be honest, I am tolerating it quite well. The first month of induction I experienced some side effects (fever, chills) and had to have my dose lowered b/c my liver function was too high the first week. After the dose reduction, I made it through the month and am now into maintenance. I am able to work full time. I get tired easier and have bad dry mouth but other than that I have been doing great on it!

      My doctor says (Dr Lawrence at MGH) that young people tend to tolerate this drug better (I'm 30 so I believe your son will hopefully will do better since he's so much younger). Also, this drug has few long term side effects so if he can not tolerate it then you just stop and move on.

      I know it is a very personal decision but for me it helped to know that if I want to stop, I can. I also knew that I had to do something – watch and wait wasn't an option for me. It only appears to work in about 10% of people – I have to believe that if there are microscopic cells still in my body that I could be one of those people who fall into the 10%. I truly believe that I am cancer free but Interferon was something I had to do.

      Good luck and congrats on the good news about the SNB – that's huge!

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        Melanoma Mom
        Participant

        Yes, the Oncologist said that the younger you are, the easier the side effects tend to be. Our son seems to have a very high threshold for pain and discomfort …. he literally sailed out of both surgeries, and that first one was pretty invasive. We won't know until we try, I guess. 

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        Melanoma Mom
        Participant

        Yes, the Oncologist said that the younger you are, the easier the side effects tend to be. Our son seems to have a very high threshold for pain and discomfort …. he literally sailed out of both surgeries, and that first one was pretty invasive. We won't know until we try, I guess. 

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      kateboston
      Participant

      It sounds like b/c of the large size (14mm) of your son's melanoma that they are suggesting Interferon. I am currently into my 3rd month of Interferon and to be honest, I am tolerating it quite well. The first month of induction I experienced some side effects (fever, chills) and had to have my dose lowered b/c my liver function was too high the first week. After the dose reduction, I made it through the month and am now into maintenance. I am able to work full time. I get tired easier and have bad dry mouth but other than that I have been doing great on it!

      My doctor says (Dr Lawrence at MGH) that young people tend to tolerate this drug better (I'm 30 so I believe your son will hopefully will do better since he's so much younger). Also, this drug has few long term side effects so if he can not tolerate it then you just stop and move on.

      I know it is a very personal decision but for me it helped to know that if I want to stop, I can. I also knew that I had to do something – watch and wait wasn't an option for me. It only appears to work in about 10% of people – I have to believe that if there are microscopic cells still in my body that I could be one of those people who fall into the 10%. I truly believe that I am cancer free but Interferon was something I had to do.

      Good luck and congrats on the good news about the SNB – that's huge!

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      Phil S
      Participant

      So happy your son's test results were good.  I just wanted to throw in my two cents, on staging.  I think this Board is so helpful, but you must remember that the vast majority of people that post here, do not have muscosal melanoma.  When my husband was diagnosed with anal/muscosal melanoma in January 2010, we were also told tumor size, etc, but no traditional staging was offered.  My husband has been seen locally in upstate NY, as well as at Sloan Kettering, and he is currently treated at Dana Farber.  None of these three doctors told us a stage!  My husband sees Dr Hodi, and he has never focused on offering us staging,etc due to the uniqueness of muscosal melanoma.  When you read about traditional staging for skin melanoma, you can kind of understand thats its a different breed.  Anyway, for our purposes we just sort of view my husband as Stage 3, because he also had a large growth that went deep and muscosal melanoma are usually considered aggressive, even though  he has been clear on his PET/CAT/MRI scans and thus far has no known lymph node involvement.  Really, at this point staging doesn't matter to me as much as just praying for clear scans and continued good health for him.  He has his next scans mid-December and see Dr Hodi again at that time. 

      In terms of interferon, my husband is just finishing his 7 month and doing well.  Dr Hodi will indicate that its a very personal choice.  My husband sees it as a "shot in the dark" that he wanted to take.  He has handled interferon very well, he is relatively young (in 40s) and was in excellent condition.  If you decide on interferon, I would hope your son's age and overall good health will help him through this treatment.  Good luck to you!   Valerie (Phil's wife)

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        Becky
        Participant

        Elizabeth, am so happy about his SNB results!

        We never got a "staging" for Ben either, and yes I heard it is different for mucosal. (Not that your sons is mucosal necessarily but unusual, like Ben's was)  In our case, interferon was pretty much it as an option. I was the one to do all the pros and cons research, Ben just took the doctors advice and wanted to try it. I think you need to talk to your son about it but really if he wants to try it, you may need to honor that decision. I just told Ben that if it ever got too bad, he could stop.

        Ben was like your son in feeling like he is young and strong and he could get though it no problem. The first night was a revelation that it isnt always mind over matter because he ended up in the ER with a really high fever and was pretty miserable. All in all, the first month was hard but he got used to it. He took a semester off but went back during the 3x a week phase and took a full course load. Maybe you can work with his school to ease up on his work at first and see how he does.

        I feel that youth is on their side when it comes to tolerating interferon. Whether the small chance of a benefit is worth it is a personal decision.

        Take care

        Becky

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        Becky
        Participant

        Elizabeth, am so happy about his SNB results!

        We never got a "staging" for Ben either, and yes I heard it is different for mucosal. (Not that your sons is mucosal necessarily but unusual, like Ben's was)  In our case, interferon was pretty much it as an option. I was the one to do all the pros and cons research, Ben just took the doctors advice and wanted to try it. I think you need to talk to your son about it but really if he wants to try it, you may need to honor that decision. I just told Ben that if it ever got too bad, he could stop.

        Ben was like your son in feeling like he is young and strong and he could get though it no problem. The first night was a revelation that it isnt always mind over matter because he ended up in the ER with a really high fever and was pretty miserable. All in all, the first month was hard but he got used to it. He took a semester off but went back during the 3x a week phase and took a full course load. Maybe you can work with his school to ease up on his work at first and see how he does.

        I feel that youth is on their side when it comes to tolerating interferon. Whether the small chance of a benefit is worth it is a personal decision.

        Take care

        Becky

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        Jim in Denver
        Participant

        A few points.  You never mention whether the diagnosis of the anal tumor is mucosal.  This is extremely important to know, for a variety of reasons.  It has been raised by Valerie and others, and yet you seem not to acknowledge the possibility.  So maybe ask Dr. Hodi about that, because it make a big difference.  Do your own Google searches about Mucosal in addition to what you will pick up from the board.  Mucosal is a different beast from what 95%+ of us have. 

        Second point is that it is questionable that if 3 Docs opinions are good to have, then 5 are even better.  At some point, it is helpful to zero in on one Doc (or maybe 2).  See what you think after speaking with Dr. Hodi.  The situation and pace must seem dizzying to you, but maybe you should slow down a little and try to sort things out.  I know that in the days following my diagnosis, I was ready to get going one something, anything, to fight the beast.  The battle is more like a marathon than a sprint, however, and making a quick decision may not be oin your son's best interest.  .

        You son's attitude is very commendable, but you should not feel like you need to rush to make a decsion.  If the decision is to do interferon, then perhaps it could be timed so as to not interfere (bad pun, that) with his (athletic) busy life and those of your other children and husband.  Life must go on, and trying to keep a "normal" family life going after diagnosis is very important, in my opinion.  I say this aa a father of two daughters, age 17 and 13, and a husband.  Life is difficult enough without letting this thing completely take over your collective lives and upset the balance that is hard enough to get without a major illness.  I apologize if my words seem unsympathetic – they are intended to be quite the opposite.

        Best wishes with a number of difficult decisions.

        Jim

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        Becky
        Participant

        I disagree a bit about the importance of the "mucosal" label. Except the possibility of the C-kit mutation, I don't think there is any difference in how mucosal is treated as compared to anyother kind of melanoma. (Except there are some trials that exclude mucosal.)

        Although my sons is mucsal by definition(oral), it was never mentioned on any reports nor by any doctors. The protocol is the same. His tumor was tested for Braf and Ckit (negative for both). Interferon was the only option except wait/watch.

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        Becky
        Participant

        I disagree a bit about the importance of the "mucosal" label. Except the possibility of the C-kit mutation, I don't think there is any difference in how mucosal is treated as compared to anyother kind of melanoma. (Except there are some trials that exclude mucosal.)

        Although my sons is mucsal by definition(oral), it was never mentioned on any reports nor by any doctors. The protocol is the same. His tumor was tested for Braf and Ckit (negative for both). Interferon was the only option except wait/watch.

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        Jim in Denver
        Participant

        A few points.  You never mention whether the diagnosis of the anal tumor is mucosal.  This is extremely important to know, for a variety of reasons.  It has been raised by Valerie and others, and yet you seem not to acknowledge the possibility.  So maybe ask Dr. Hodi about that, because it make a big difference.  Do your own Google searches about Mucosal in addition to what you will pick up from the board.  Mucosal is a different beast from what 95%+ of us have. 

        Second point is that it is questionable that if 3 Docs opinions are good to have, then 5 are even better.  At some point, it is helpful to zero in on one Doc (or maybe 2).  See what you think after speaking with Dr. Hodi.  The situation and pace must seem dizzying to you, but maybe you should slow down a little and try to sort things out.  I know that in the days following my diagnosis, I was ready to get going one something, anything, to fight the beast.  The battle is more like a marathon than a sprint, however, and making a quick decision may not be oin your son's best interest.  .

        You son's attitude is very commendable, but you should not feel like you need to rush to make a decsion.  If the decision is to do interferon, then perhaps it could be timed so as to not interfere (bad pun, that) with his (athletic) busy life and those of your other children and husband.  Life must go on, and trying to keep a "normal" family life going after diagnosis is very important, in my opinion.  I say this aa a father of two daughters, age 17 and 13, and a husband.  Life is difficult enough without letting this thing completely take over your collective lives and upset the balance that is hard enough to get without a major illness.  I apologize if my words seem unsympathetic – they are intended to be quite the opposite.

        Best wishes with a number of difficult decisions.

        Jim

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      Phil S
      Participant

      So happy your son's test results were good.  I just wanted to throw in my two cents, on staging.  I think this Board is so helpful, but you must remember that the vast majority of people that post here, do not have muscosal melanoma.  When my husband was diagnosed with anal/muscosal melanoma in January 2010, we were also told tumor size, etc, but no traditional staging was offered.  My husband has been seen locally in upstate NY, as well as at Sloan Kettering, and he is currently treated at Dana Farber.  None of these three doctors told us a stage!  My husband sees Dr Hodi, and he has never focused on offering us staging,etc due to the uniqueness of muscosal melanoma.  When you read about traditional staging for skin melanoma, you can kind of understand thats its a different breed.  Anyway, for our purposes we just sort of view my husband as Stage 3, because he also had a large growth that went deep and muscosal melanoma are usually considered aggressive, even though  he has been clear on his PET/CAT/MRI scans and thus far has no known lymph node involvement.  Really, at this point staging doesn't matter to me as much as just praying for clear scans and continued good health for him.  He has his next scans mid-December and see Dr Hodi again at that time. 

      In terms of interferon, my husband is just finishing his 7 month and doing well.  Dr Hodi will indicate that its a very personal choice.  My husband sees it as a "shot in the dark" that he wanted to take.  He has handled interferon very well, he is relatively young (in 40s) and was in excellent condition.  If you decide on interferon, I would hope your son's age and overall good health will help him through this treatment.  Good luck to you!   Valerie (Phil's wife)

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      Laurie from maine
      Participant

      Hi

      I can see where your son wants to jump in and just get this moving.  It helps that he is young and strong.  I saw Dr Lawrence and Dr Hodi.  I really liked both, but went with Dr Lawrence as my primary oncologist. (love the pontytail ha).  At that time 08 – Dr Lawrence said he would help me find someone up in Maine who could administer the intereron so that I wouldnt have to travel down to MA .  Especially since high dose involves daily visits to hospital for IV so that isnt really doable to travel that far.    I hope they can find you a good oncologist up in Maine to help if he choses to do intereron.  (I did mine thru doctor in Concord, MA because I stayed with family down in MA during high dose phase to help me if I had issues, but turned out to be no problem for me).    Let us know what you find out from Dr Hodi.

      take care

      laurie from maine (portland)

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        Melanoma Mom
        Participant

        My daughter sees a Hematologist/Oncologist at Maine Med (Maine Children's Cancer Center), as she has a blood disorder. I have known this physician for 8 years and feel very confident in her ability to support us with the Interferon, especially since they often work with DF. 

        My son wants to get the first month behind him so he can hit the slopes ….. avid skiier. So I hope that he will feel well enough for some skiing because it makes him so happy.

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        Melanoma Mom
        Participant

        My daughter sees a Hematologist/Oncologist at Maine Med (Maine Children's Cancer Center), as she has a blood disorder. I have known this physician for 8 years and feel very confident in her ability to support us with the Interferon, especially since they often work with DF. 

        My son wants to get the first month behind him so he can hit the slopes ….. avid skiier. So I hope that he will feel well enough for some skiing because it makes him so happy.

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      Laurie from maine
      Participant

      Hi

      I can see where your son wants to jump in and just get this moving.  It helps that he is young and strong.  I saw Dr Lawrence and Dr Hodi.  I really liked both, but went with Dr Lawrence as my primary oncologist. (love the pontytail ha).  At that time 08 – Dr Lawrence said he would help me find someone up in Maine who could administer the intereron so that I wouldnt have to travel down to MA .  Especially since high dose involves daily visits to hospital for IV so that isnt really doable to travel that far.    I hope they can find you a good oncologist up in Maine to help if he choses to do intereron.  (I did mine thru doctor in Concord, MA because I stayed with family down in MA during high dose phase to help me if I had issues, but turned out to be no problem for me).    Let us know what you find out from Dr Hodi.

      take care

      laurie from maine (portland)

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      James from Sydney
      Participant

      Our son had only just turned 18 when he did Interferon, he managed well with only side effects being lethargy. and flu like headaches. He took the 1st month IV late in the day so went home had a quick dinner and slept it off. The 11 month part he managed to do 1st year University, play soccer in winter and cricket in summer. Having said that some people DO get flattened by IFN.

      Good luck with it and post again if you decide to start as you will get suggestions on what might help to ease symptoms.

      best wishes

      James

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      James from Sydney
      Participant

      Our son had only just turned 18 when he did Interferon, he managed well with only side effects being lethargy. and flu like headaches. He took the 1st month IV late in the day so went home had a quick dinner and slept it off. The 11 month part he managed to do 1st year University, play soccer in winter and cricket in summer. Having said that some people DO get flattened by IFN.

      Good luck with it and post again if you decide to start as you will get suggestions on what might help to ease symptoms.

      best wishes

      James

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      dawnmfld
      Participant

      I just want to let you know that I am a melanoma mom as well.  My daughter was diagnosed Nov 09 with melanoma at the age of 8.  We have been fighting this for one year already.  Her melanoma is in her brain and spine….no where else in the body….PET and bone scans are negative; no lesions noted.  We have been treated at St. Judes and will be starting treatment at Sloan Kettering.  Although we are in two different ball parks, we are still in the same game.  Becca is doing very well even though it sounds terrible….we are defying the odds.  I just want to let you know, you are your son's best advocate.  I have talked with, emailed, and visited many doctors around the country….Memphis TN, Nashville, TN,  MD Anderson..Houston TX,  Yale and New York.   I have personally talked with the doctors from the pharmaceutical companies regarding drugs and protocols that may be beneficial for Becca.  You will find great info on this site as well as the other MIF site.  Continue to do lots of research and push for your son.  Again, you are the best advocate so get all the info and opinions you can….Push for the answers because an informed mom is an empowered mom!!!!

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      dawnmfld
      Participant

      I just want to let you know that I am a melanoma mom as well.  My daughter was diagnosed Nov 09 with melanoma at the age of 8.  We have been fighting this for one year already.  Her melanoma is in her brain and spine….no where else in the body….PET and bone scans are negative; no lesions noted.  We have been treated at St. Judes and will be starting treatment at Sloan Kettering.  Although we are in two different ball parks, we are still in the same game.  Becca is doing very well even though it sounds terrible….we are defying the odds.  I just want to let you know, you are your son's best advocate.  I have talked with, emailed, and visited many doctors around the country….Memphis TN, Nashville, TN,  MD Anderson..Houston TX,  Yale and New York.   I have personally talked with the doctors from the pharmaceutical companies regarding drugs and protocols that may be beneficial for Becca.  You will find great info on this site as well as the other MIF site.  Continue to do lots of research and push for your son.  Again, you are the best advocate so get all the info and opinions you can….Push for the answers because an informed mom is an empowered mom!!!!

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About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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