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husband newly diagnosed, starts interferon

Forums General Melanoma Community husband newly diagnosed, starts interferon

  • Post
    bluepeople
    Participant

    So my hubby was diagnosed with stage 2b, 2c melanoma.  He had 2 spots removed, checked both sentinal nodes which were clear.  Still a little worried since one spot was pretty deep.  PETscan next week, crossing our fingers that it hasn't spread anywhere.  He is supposed to start high dose interferon in November, then the 11 months of maintenance low dose.  From those of you who have done this, and are stage 2, what was your experience?  I keep hearing that it is a year of hell, and that lots of people don't last the whole year for various reasons. 

    So my hubby was diagnosed with stage 2b, 2c melanoma.  He had 2 spots removed, checked both sentinal nodes which were clear.  Still a little worried since one spot was pretty deep.  PETscan next week, crossing our fingers that it hasn't spread anywhere.  He is supposed to start high dose interferon in November, then the 11 months of maintenance low dose.  From those of you who have done this, and are stage 2, what was your experience?  I keep hearing that it is a year of hell, and that lots of people don't last the whole year for various reasons.  It seems that this is a proactive way to battle the cancer I guess.  I'm pretty freaked out since my dad died from melanoma in 2000 (although he didn't catch it till it was pretty advanced).  Are there other options?  Thanks for any input.

    Akilyn

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      Fen
      Participant

      First, I am so sorry you had to find this board, but it is a wonderful place for information.  Where is your husband being treated?  Are you going to a melanoma specialist?  From what I've read here, interferon is usually for stage III and even then, most drs. are recommending just the 1 month of high dose.

      If your husband does decide to do the year his experience will be his own – some people go through it easily while others have a really hard time.  Just depends. 

      Good luck and please keep posting!

      Fen

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      Fen
      Participant

      First, I am so sorry you had to find this board, but it is a wonderful place for information.  Where is your husband being treated?  Are you going to a melanoma specialist?  From what I've read here, interferon is usually for stage III and even then, most drs. are recommending just the 1 month of high dose.

      If your husband does decide to do the year his experience will be his own – some people go through it easily while others have a really hard time.  Just depends. 

      Good luck and please keep posting!

      Fen

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      Tim–MRF
      Guest

      Whether or not to do interferon is a highly personal choice.  The data show that the benefit is marginal, but for some that little bit of extra protection is worth the side effects.  Some people swear by it; others swear they will never do it.

      Other options do exist for people with Stage II diagnosis.  One is to do nothing but have close observation.  This is probably the most common recommendation.  It can be tough, though, because a lot of patients want to feel they are doing something.

      Another choice is to find a clinical trial.  I believe there are some vaccine trials that are open to Stage II survivors.  You can try looking at http://www.clinicaltrials.gov for some of these.

      Tim–MRF

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      Tim–MRF
      Guest

      Whether or not to do interferon is a highly personal choice.  The data show that the benefit is marginal, but for some that little bit of extra protection is worth the side effects.  Some people swear by it; others swear they will never do it.

      Other options do exist for people with Stage II diagnosis.  One is to do nothing but have close observation.  This is probably the most common recommendation.  It can be tough, though, because a lot of patients want to feel they are doing something.

      Another choice is to find a clinical trial.  I believe there are some vaccine trials that are open to Stage II survivors.  You can try looking at http://www.clinicaltrials.gov for some of these.

      Tim–MRF

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      Phil S
      Participant

      Akilyn     I have posted a lot lately when someone asks about interferon. My husband, Phil started interferon in May of this year, and has done remarkably well.  He never missed work, not even during the high dose month, and continues to help out with our two small children, cut our wood for winter, and work.  He is tired, and is planning on taking a nap today when he gets home from work.  He fits in additional rest whenever he can, and goes to bed early at night.  Also, he lost weight and doesn't like to eat that much.  However, overall his body's adjustment to interferon has been much easier than we thought.  His blood work and liver function tests always in the low/normal range.  They will monitor these tests results, and can make adjustments if needed (lower the dose,etc)

      We know that the literature/science indicates that completing the high dose first month of interferon is the most important, so we were determined to do that part.  We had both agreed that if interferon was really affecting the quality of his life, he would stop after that first month. However, in our case, so far so good.  Not a life of Hell.   As you will hear, everyone is so different, so you won't know how your husband does with interferon until he actually starts.  Just be aware that my husband's first night was the worst, chills, etc. and we thought, "Oh Boy" this is going to be tough.  However, his body adjusted fairly quickly, and that was the only night like that for him. 

      As others have stated on this Board, interferon offers only marginal benefits, and as I have stated before on this Bulletin, the two major cancer centers who have reviewed Phil's case, did not recommend interferon.  However, dealing with cancer, is a very personal thing, and my husband and I knew we had to do something for our mental health and to feel we were being at least a little proactive.  For us, interferon was the right choice. Only time and scans will tell, and if we can go a longer period of time before recurrence, we will never know for sure if interferon is the reason.  For us,  interferon is a gamble, we decided was worth the side effects.                                                                                                            Good luck to you and your husband.   Valerie  (Phil's Wife)

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        bluepeople
        Participant

        Hi, thanks for the response.  It is so great to hear different stories and see how other people have handled this.  It's encouraging to hear that your husband did so well with the treatment, but I do know that it is different for everyone.  We have a 1-yr old son which I think it what is giving him the most motivation to go ahead with the treatment to do whatever he can do to better his chances!  Thanks for your words of hope. 

        Akilyn

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        bluepeople
        Participant

        Hi, thanks for the response.  It is so great to hear different stories and see how other people have handled this.  It's encouraging to hear that your husband did so well with the treatment, but I do know that it is different for everyone.  We have a 1-yr old son which I think it what is giving him the most motivation to go ahead with the treatment to do whatever he can do to better his chances!  Thanks for your words of hope. 

        Akilyn

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      Phil S
      Participant

      Akilyn     I have posted a lot lately when someone asks about interferon. My husband, Phil started interferon in May of this year, and has done remarkably well.  He never missed work, not even during the high dose month, and continues to help out with our two small children, cut our wood for winter, and work.  He is tired, and is planning on taking a nap today when he gets home from work.  He fits in additional rest whenever he can, and goes to bed early at night.  Also, he lost weight and doesn't like to eat that much.  However, overall his body's adjustment to interferon has been much easier than we thought.  His blood work and liver function tests always in the low/normal range.  They will monitor these tests results, and can make adjustments if needed (lower the dose,etc)

      We know that the literature/science indicates that completing the high dose first month of interferon is the most important, so we were determined to do that part.  We had both agreed that if interferon was really affecting the quality of his life, he would stop after that first month. However, in our case, so far so good.  Not a life of Hell.   As you will hear, everyone is so different, so you won't know how your husband does with interferon until he actually starts.  Just be aware that my husband's first night was the worst, chills, etc. and we thought, "Oh Boy" this is going to be tough.  However, his body adjusted fairly quickly, and that was the only night like that for him. 

      As others have stated on this Board, interferon offers only marginal benefits, and as I have stated before on this Bulletin, the two major cancer centers who have reviewed Phil's case, did not recommend interferon.  However, dealing with cancer, is a very personal thing, and my husband and I knew we had to do something for our mental health and to feel we were being at least a little proactive.  For us, interferon was the right choice. Only time and scans will tell, and if we can go a longer period of time before recurrence, we will never know for sure if interferon is the reason.  For us,  interferon is a gamble, we decided was worth the side effects.                                                                                                            Good luck to you and your husband.   Valerie  (Phil's Wife)

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      bluepeople
      Participant

      I keep hearing about cancer centers and melanoma specialists.  We go to Kaiser so I am afraid we might be more limited in the doctors we can choose (although the Kaiser in our area is one of the better ones).  Anyone have good experience with Kaiser??  I didn't go with him to his 1st appt. with the oncologist because we didn't realize they were going to talk about treatments, we just thought they were going to schedule the PET scan.  I'll make sure to go to the next one and ask some questions about that.  We've had good experiences with Kaiser so far, but then we've never had anything this serious before.  Even though it is stage 2, I think the main thing they are concerned about is the how deep the one on his arm was so that is why they are doing the interferon treatment.  Thanks for all of the kind words, I really appreciate it.  I'll make sure to have my husband sign up on this site, the support would be really great. 

      Thanks,

        Akilyn

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        Kevin from Atlanta
        Participant

        When I was dx'ed stage II, I was with Kaiser. I also did the interferonbut my dosage was high. 40 MIU high and 20 MIU 3 times a week low dosage. Interferon affected me greatly. Kaiser was effecient with the treatments and surgeries.

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        Kevin from Atlanta
        Participant

        When I was dx'ed stage II, I was with Kaiser. I also did the interferonbut my dosage was high. 40 MIU high and 20 MIU 3 times a week low dosage. Interferon affected me greatly. Kaiser was effecient with the treatments and surgeries.

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        bluepeople
        Participant

        I'm glad to hear that you had a good experience with Kaiser.  He is also scheduled to do the high dosage 5x/week  for 4 weeks, and then low dosage 3x/week as long as the pet scan is clear.  Were you able to do the whole year of treatment?

        Akilyn 

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        bluepeople
        Participant

        I'm glad to hear that you had a good experience with Kaiser.  He is also scheduled to do the high dosage 5x/week  for 4 weeks, and then low dosage 3x/week as long as the pet scan is clear.  Were you able to do the whole year of treatment?

        Akilyn 

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        melanomafighter
        Participant

        hello, I agree with about all that was listed here.  Your husband will have to try it and see how he does.  The first night was the worst for me also, after that not really too much except tired.  I managed very well with the high dose, the low dose is what got me knocked down and those are supposed to be the ones you can go back to work on.  I couldn't and therefore I stopped after 3 weeks of the home low doses.  Just went back to work on 9-1-10.  Good luck to you and your husband, and my doctor and my surgeon did tell me the 4 weeks at high dose is usually enough protection so I went with that.

        Teresa in Indiana

        Stage IIIB

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        bluepeople
        Participant

         Thanks for your note.  It is hard not knowing what is going to happen, and how his body will handle it.  We'll keep our fingers crossed that he does ok.  How weird that it was the lower dose that was bad for you!  Thanks for the input.

        Akilyn

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        bluepeople
        Participant

         Thanks for your note.  It is hard not knowing what is going to happen, and how his body will handle it.  We'll keep our fingers crossed that he does ok.  How weird that it was the lower dose that was bad for you!  Thanks for the input.

        Akilyn

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        Becky
        Participant

        Hi. We also have Kaiser. My son's melanoma was on his tongue so the surgeon that did the sugeries was a Kaiser head and neck doctor…he was wonderful. His oncologist has also been great, although he is not a melanoma specialist. We asked and got a second opinion at Stanford. The interferon was all done through Kaiser and all the nurses were great as well.

        If things progress I will ask to go to a melanoma specialist (we are in the SF bay area so there are a few nearby) but so far Kaiser has been really good.

        My son just finished his year-long interferon (yay!). He did really well for the most part during that year, was able to go back to college full time etc.The first month was rough but went quickly. I think he had youth on his side ( he was 21) and I know it is is different for everyone. Hopefully it won't be too bad for your husband.

        Becky

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        Becky
        Participant

        Hi. We also have Kaiser. My son's melanoma was on his tongue so the surgeon that did the sugeries was a Kaiser head and neck doctor…he was wonderful. His oncologist has also been great, although he is not a melanoma specialist. We asked and got a second opinion at Stanford. The interferon was all done through Kaiser and all the nurses were great as well.

        If things progress I will ask to go to a melanoma specialist (we are in the SF bay area so there are a few nearby) but so far Kaiser has been really good.

        My son just finished his year-long interferon (yay!). He did really well for the most part during that year, was able to go back to college full time etc.The first month was rough but went quickly. I think he had youth on his side ( he was 21) and I know it is is different for everyone. Hopefully it won't be too bad for your husband.

        Becky

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        bluepeople
        Participant

        Hi,

        I am also in the bay area.  We have been going to the Santa Clara Kaiser, but just requested a new oncologist at the San Jose Kaiser as it is a little closer, and since he'll be going in every day, it seems like it will be more convenient.  I am so glad to hear all of these experiences, thanks so much and I hope continued good luck to your son. 

        Akilyn

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        bluepeople
        Participant

        Hi,

        I am also in the bay area.  We have been going to the Santa Clara Kaiser, but just requested a new oncologist at the San Jose Kaiser as it is a little closer, and since he'll be going in every day, it seems like it will be more convenient.  I am so glad to hear all of these experiences, thanks so much and I hope continued good luck to your son. 

        Akilyn

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        melanomafighter
        Participant

        hello, I agree with about all that was listed here.  Your husband will have to try it and see how he does.  The first night was the worst for me also, after that not really too much except tired.  I managed very well with the high dose, the low dose is what got me knocked down and those are supposed to be the ones you can go back to work on.  I couldn't and therefore I stopped after 3 weeks of the home low doses.  Just went back to work on 9-1-10.  Good luck to you and your husband, and my doctor and my surgeon did tell me the 4 weeks at high dose is usually enough protection so I went with that.

        Teresa in Indiana

        Stage IIIB

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      bluepeople
      Participant

      I keep hearing about cancer centers and melanoma specialists.  We go to Kaiser so I am afraid we might be more limited in the doctors we can choose (although the Kaiser in our area is one of the better ones).  Anyone have good experience with Kaiser??  I didn't go with him to his 1st appt. with the oncologist because we didn't realize they were going to talk about treatments, we just thought they were going to schedule the PET scan.  I'll make sure to go to the next one and ask some questions about that.  We've had good experiences with Kaiser so far, but then we've never had anything this serious before.  Even though it is stage 2, I think the main thing they are concerned about is the how deep the one on his arm was so that is why they are doing the interferon treatment.  Thanks for all of the kind words, I really appreciate it.  I'll make sure to have my husband sign up on this site, the support would be really great. 

      Thanks,

        Akilyn

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      magpie1661
      Participant

      I am so sorry that your husband and family are having to go through this.  My husband completed his 4 weeks of high dose and the low dose 3x a week with very few side effects.  The first four weeks, he scheduled the dose towards the end of the day as he didn't want to miss work.  In the beginning he would have flulike symptoms kick in about an hour and a half after receiving the dose,  he would go straight to bed and was feeling much better the next morning.  He didn't miss a day of work and even resumed officiating basketball. He didn't receive any pet scans until he had been off the Interferon for six weeks.  If I were to do this again, I would insist that pet scans be done.  When he did receive the pet scan results, his melanoma had spread. Remember, no two bodies are alike, and there's no guarantee of ned.  Trust his and your instincts and don't be afraid to question his doctor.

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        bluepeople
        Participant

         HI,

        I was glad to get your message.  I was wondering how it would work if he did the treatments at the end of the day, thinking he could just go home, get a good night's rest, and hopefully be able to handle the next day better.  I'll make sure to suggest it to him.  He is having a PET scan today (keep your fingers and toes crossed) that it hasn't spread.  I'm hoping since the sentinal node biopsies were clear, that it hasn't spread, but I know that is not always the case.  Thank you for sharing your experience, and good luck in your continued journey. 

        Akilyn

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        Vermont_Donna
        Participant

         Hi Akilyn,

         Here's my interferon story….and like people said above, everyone is different and you (your husband) must take into account your health situation, other health problems, if any, your family situation, whether you can receive disability payments and/or SSDI payments if you cannot work, financial considerations, health insurance issues, and quality of life. Also important is your mental health…..you want to feel like you are DOING something! I met with a melanoma specialist at a well known hospital (90 min away) in my area, New England, a cancer center…….I liked that he took several hours for my first visit, and he reviewed ALL my records from my local dermatologist and the surgeon who did the first mole removal, then the SNB and the WLE , respectively. It was my surgeon who is local to me where I live who referred me to a melanoma specialist, who practices 90 miles away in a major medical center. Heck it was my life and I was going! As I said, I really liked the doctor, and my mom, who went with me and is a retired nurse and had worked at that hospital, well she liked him too. He answered ALL of our questions, explained his treatment recommendations to me and I decided to do a full year of interferon which he recommended!  I had PICC line problems so only got two doses of high dose into me but did do the 11 months of low dose injections, to myself, three times a week. Giving the shots you learn and is no big deal. The first dose of interferon I got in the oncology ward……man oh man what an experience that was!!! A couple of hours after receiving it I felt so weird and sooooooooo strange, like nothing I have ever felt before. Long story short, I had thought after waiting several hours that I was ok to drive home the 90 miles……uh no……I got 30 miles up the interstate and had to pull over, I was so dizzy and naseous (sp?)….I pulled over and a state trooper pulled right behind me……he saw that I was so sick and saw the "bracelet" from the hospital on my wrist and said his mother felt the same way with her "chemo", so he waited til my parents came and one drove my car and my other parent took me in their car and took me to their house and put me to bed…where I slept…..but I was so cold…….you need an electric blanket! Anyways, this is long, but I did eventually get to do the 11 months, and I was extremely fatigued! I did not work, but I qualified for SSDI…stage 3a and more is considered "internal cancer"…..I am not sure stage 2 is…anyways, I stayed home, did a little houeswork in the mornings, slept all afternoon and went to bed early,. I figured I slept about 15 hours a day. I am a single parent and I had  a daughter who was a senior in high school which was good for me to focus on trying to be mom, cook dinner, etc, and I had one in college and so had those bills and financial etc, and two on their own, more or less, lol….anyways the finances took a turn for the worse but my health was the most important thing…I wanted to fight this cancer, get healthy as I could, rest, and eat right……my mental health was good as I felt like I was doing something. Yes my cancer came back, 9 months or 11 months after I stopped the interferon. It delays a re-occurence, doesnt necissarily prevent it. Treatments initially for me were focused on immunotherapy…..make my body stronger to fight the melanoma…..interferon, then leukine, and then also radiation, etc………who knows where I would be today if I hadnt done the Interferon?? It was the right choice FOR ME. Choose the best treatment, with your family and doctors support and recommendations and dont regret your choices……Best of luck, and tell your husband that Vermont_Donna wishes him a long and happy life!!!

        Vermont_Donna

        stage 3a

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        Vermont_Donna
        Participant

         Hi Akilyn,

         Here's my interferon story….and like people said above, everyone is different and you (your husband) must take into account your health situation, other health problems, if any, your family situation, whether you can receive disability payments and/or SSDI payments if you cannot work, financial considerations, health insurance issues, and quality of life. Also important is your mental health…..you want to feel like you are DOING something! I met with a melanoma specialist at a well known hospital (90 min away) in my area, New England, a cancer center…….I liked that he took several hours for my first visit, and he reviewed ALL my records from my local dermatologist and the surgeon who did the first mole removal, then the SNB and the WLE , respectively. It was my surgeon who is local to me where I live who referred me to a melanoma specialist, who practices 90 miles away in a major medical center. Heck it was my life and I was going! As I said, I really liked the doctor, and my mom, who went with me and is a retired nurse and had worked at that hospital, well she liked him too. He answered ALL of our questions, explained his treatment recommendations to me and I decided to do a full year of interferon which he recommended!  I had PICC line problems so only got two doses of high dose into me but did do the 11 months of low dose injections, to myself, three times a week. Giving the shots you learn and is no big deal. The first dose of interferon I got in the oncology ward……man oh man what an experience that was!!! A couple of hours after receiving it I felt so weird and sooooooooo strange, like nothing I have ever felt before. Long story short, I had thought after waiting several hours that I was ok to drive home the 90 miles……uh no……I got 30 miles up the interstate and had to pull over, I was so dizzy and naseous (sp?)….I pulled over and a state trooper pulled right behind me……he saw that I was so sick and saw the "bracelet" from the hospital on my wrist and said his mother felt the same way with her "chemo", so he waited til my parents came and one drove my car and my other parent took me in their car and took me to their house and put me to bed…where I slept…..but I was so cold…….you need an electric blanket! Anyways, this is long, but I did eventually get to do the 11 months, and I was extremely fatigued! I did not work, but I qualified for SSDI…stage 3a and more is considered "internal cancer"…..I am not sure stage 2 is…anyways, I stayed home, did a little houeswork in the mornings, slept all afternoon and went to bed early,. I figured I slept about 15 hours a day. I am a single parent and I had  a daughter who was a senior in high school which was good for me to focus on trying to be mom, cook dinner, etc, and I had one in college and so had those bills and financial etc, and two on their own, more or less, lol….anyways the finances took a turn for the worse but my health was the most important thing…I wanted to fight this cancer, get healthy as I could, rest, and eat right……my mental health was good as I felt like I was doing something. Yes my cancer came back, 9 months or 11 months after I stopped the interferon. It delays a re-occurence, doesnt necissarily prevent it. Treatments initially for me were focused on immunotherapy…..make my body stronger to fight the melanoma…..interferon, then leukine, and then also radiation, etc………who knows where I would be today if I hadnt done the Interferon?? It was the right choice FOR ME. Choose the best treatment, with your family and doctors support and recommendations and dont regret your choices……Best of luck, and tell your husband that Vermont_Donna wishes him a long and happy life!!!

        Vermont_Donna

        stage 3a

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        bluepeople
        Participant

         HI,

        I was glad to get your message.  I was wondering how it would work if he did the treatments at the end of the day, thinking he could just go home, get a good night's rest, and hopefully be able to handle the next day better.  I'll make sure to suggest it to him.  He is having a PET scan today (keep your fingers and toes crossed) that it hasn't spread.  I'm hoping since the sentinal node biopsies were clear, that it hasn't spread, but I know that is not always the case.  Thank you for sharing your experience, and good luck in your continued journey. 

        Akilyn

        Loading spinner
      magpie1661
      Participant

      I am so sorry that your husband and family are having to go through this.  My husband completed his 4 weeks of high dose and the low dose 3x a week with very few side effects.  The first four weeks, he scheduled the dose towards the end of the day as he didn't want to miss work.  In the beginning he would have flulike symptoms kick in about an hour and a half after receiving the dose,  he would go straight to bed and was feeling much better the next morning.  He didn't miss a day of work and even resumed officiating basketball. He didn't receive any pet scans until he had been off the Interferon for six weeks.  If I were to do this again, I would insist that pet scans be done.  When he did receive the pet scan results, his melanoma had spread. Remember, no two bodies are alike, and there's no guarantee of ned.  Trust his and your instincts and don't be afraid to question his doctor.

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