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Initial Diagnosis Stage 3C

Forums General Melanoma Community Initial Diagnosis Stage 3C

  • Post
    boot2aboot
    Participant

    I am curious to find out if anyone else got an initial diagnosis of IIIC? what treatments did you start? how were the results?

    I am curious to find out if anyone else got an initial diagnosis of IIIC? what treatments did you start? how were the results?

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  • Replies
      FormerCaregiver
      Participant

      Just like to say a bit about treatments in general. As research is advancing rapidly, so are the
      treatments that may be offered. What was the best drug a few years ago is very likely to be
      outdated now.

      However, it is wise to be aware of the fact that many oncologists tend to be very conservative in
      what treatments they recommend. Therefore, they will usually suggest old therapies that they are
      most familiar with rather than trying to arrange to get you to be part of a clinical trial where
      better drugs are usually available.

      I found some good info about the stages of melanoma at:
      http://www.cancerhelp.org.uk/type/melanoma/treatment/stages-of-melanoma
      and
      http://www.cancerhelp.org.uk/type/melanoma/treatment/medium-stage-melanoma

      Hope that things will go well for you.

      Frank from Australia

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        Vermont_Donna
        Participant

        Dear Boots,

        There are many people here, past and present who were diagnosed at stage 3a, 3b, 3c, or stage 4 at their INITIAL diagnosis. Not everyone posts, there are many who come here to MPIP and just read the posts. Some come for a short time and move on, not wanting to continue to read the bulletin board for a variety of reasons which is not a negative reflection of them or this bulletin board. Some are regular posters, on a daily basis, others on a weekly basis or whenever something moves them to post an answer to a question they feel they can give some input on. I have been a member of this board for almost 5 years, since my initial diagnosis, at stage 3a by the way. (My profile probably doesnt reflect the accuracy of how long I have been a member as when the MPIP bulletin board changed its format we all had to sign up again and choose a different name, password, etc, so it only reflects the most recent log in information, etc).

        Frank above is so right….things have changed rapidly in treatments for melanoma over the last few years. Some older treatment recommendations like interferon and others are still made by melanoma oncologists. This doesnt mean they are out of touch or dont know what they are doing. What is important to know is that in addition to the written information you can find online and elsewhere, and reading about people's particular situations that they post about on this bulletin board, it is critical that you consider that your melanoma oncologist not only knows the medical specifics of melanoma treatments but they also are aware of how their patients have responded clinically to these treatments throughout the doctors course of treating hundreds of their patients. Their knowledge is of course invaluable. My melanoma oncologist has stated to me he is often in touch with other melanoma oncologists around the country and he knows many of them. Another thing to consider is that your melanoma oncologist needs to consider you, in your totality…..ALL of your health issues, in addition to your melanoma diagnosis, stage, etc, so he or she can assist you in choosing the very best treatment for you given your entire health status and also personal family, financial, etc status. For instance I have severe allergies, I have some heart conditions, etc. My melanoma oncologist does a thorough physical examination every time I see him, he does lab work, does frequent PET/CT scans, refers me to have other specialists get involved for my other health issues if needed, gets the results/recommendations of their workup of me and considers this information when further discussing treatments with me. The melanoma oncologist is treating you the person, not just you the melanoma cancer. By the way, my melanoma oncologist and his melanoma nurse practitioner are very well versed in lymphadema, and in managing lymphadema and have made appropriate referrals for me and always check my lymphadema status when I see them, and actually have me on prophylactic antibiotics as I was getting frequent cellulitis infections as I have 11 month old poorly healing wounds from wider excisions on my right calf. I know others have mentioned on this board that oncologists dont know about lymphadema….thats a broad generalization. Another thing that my melanoma oncologist does is sends electronically a copy of every physician contact, PET/CT scan, update, etc on any melanoma treatments or other speciality visits I have at my major medical center where I go for my oncology care to my General Practitioner (Primary Care Physician), so whenever I go to her, she is totally in the loop. 

        A word about clinical trials: clinical trials often have randomized arms meaning you may get the drug or you may get the placebo or you may get another drug….that is the nature of clinical trials, and you are always given much information upfront to read and discuss before you sign any consents to participate, as clinical trials are RESEARCH trials.  Not saying they are bad and in fact I was just a participant in a clinical trial with Ipilimumab and this treatment has had great success for me.

        I have read that you have been staged as 3c. I am truly sorry to hear this news for you, and I know that you certainly did not want to be so far along in the stages but I hope that you can see by reading these posts and asking your questions and posting your updates that this is a group of caring and knowledgeable people and that you can see that many people here with stage 3 or stage 4 melanoma cancer live wonderful and fulfilling FULL lives. We are here to support you and to receive support when we need it. It makes it a little less scary to be here. We dont beat around the bush, we tell it straight up….and then we help people deal with what is going on. None of us like having this dreadful disease, but we choose to live life enthusiastically, embracing all the good we can get and dealing with the hand we've been dealt.

        All the best to you Boots, we are right here beside you, take a few deep breaths and make each day the best that you can.

        Vermont_Donna, stage 3a, stable after 4 infusions of Ipi

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        Vermont_Donna
        Participant

        Dear Boots,

        There are many people here, past and present who were diagnosed at stage 3a, 3b, 3c, or stage 4 at their INITIAL diagnosis. Not everyone posts, there are many who come here to MPIP and just read the posts. Some come for a short time and move on, not wanting to continue to read the bulletin board for a variety of reasons which is not a negative reflection of them or this bulletin board. Some are regular posters, on a daily basis, others on a weekly basis or whenever something moves them to post an answer to a question they feel they can give some input on. I have been a member of this board for almost 5 years, since my initial diagnosis, at stage 3a by the way. (My profile probably doesnt reflect the accuracy of how long I have been a member as when the MPIP bulletin board changed its format we all had to sign up again and choose a different name, password, etc, so it only reflects the most recent log in information, etc).

        Frank above is so right….things have changed rapidly in treatments for melanoma over the last few years. Some older treatment recommendations like interferon and others are still made by melanoma oncologists. This doesnt mean they are out of touch or dont know what they are doing. What is important to know is that in addition to the written information you can find online and elsewhere, and reading about people's particular situations that they post about on this bulletin board, it is critical that you consider that your melanoma oncologist not only knows the medical specifics of melanoma treatments but they also are aware of how their patients have responded clinically to these treatments throughout the doctors course of treating hundreds of their patients. Their knowledge is of course invaluable. My melanoma oncologist has stated to me he is often in touch with other melanoma oncologists around the country and he knows many of them. Another thing to consider is that your melanoma oncologist needs to consider you, in your totality…..ALL of your health issues, in addition to your melanoma diagnosis, stage, etc, so he or she can assist you in choosing the very best treatment for you given your entire health status and also personal family, financial, etc status. For instance I have severe allergies, I have some heart conditions, etc. My melanoma oncologist does a thorough physical examination every time I see him, he does lab work, does frequent PET/CT scans, refers me to have other specialists get involved for my other health issues if needed, gets the results/recommendations of their workup of me and considers this information when further discussing treatments with me. The melanoma oncologist is treating you the person, not just you the melanoma cancer. By the way, my melanoma oncologist and his melanoma nurse practitioner are very well versed in lymphadema, and in managing lymphadema and have made appropriate referrals for me and always check my lymphadema status when I see them, and actually have me on prophylactic antibiotics as I was getting frequent cellulitis infections as I have 11 month old poorly healing wounds from wider excisions on my right calf. I know others have mentioned on this board that oncologists dont know about lymphadema….thats a broad generalization. Another thing that my melanoma oncologist does is sends electronically a copy of every physician contact, PET/CT scan, update, etc on any melanoma treatments or other speciality visits I have at my major medical center where I go for my oncology care to my General Practitioner (Primary Care Physician), so whenever I go to her, she is totally in the loop. 

        A word about clinical trials: clinical trials often have randomized arms meaning you may get the drug or you may get the placebo or you may get another drug….that is the nature of clinical trials, and you are always given much information upfront to read and discuss before you sign any consents to participate, as clinical trials are RESEARCH trials.  Not saying they are bad and in fact I was just a participant in a clinical trial with Ipilimumab and this treatment has had great success for me.

        I have read that you have been staged as 3c. I am truly sorry to hear this news for you, and I know that you certainly did not want to be so far along in the stages but I hope that you can see by reading these posts and asking your questions and posting your updates that this is a group of caring and knowledgeable people and that you can see that many people here with stage 3 or stage 4 melanoma cancer live wonderful and fulfilling FULL lives. We are here to support you and to receive support when we need it. It makes it a little less scary to be here. We dont beat around the bush, we tell it straight up….and then we help people deal with what is going on. None of us like having this dreadful disease, but we choose to live life enthusiastically, embracing all the good we can get and dealing with the hand we've been dealt.

        All the best to you Boots, we are right here beside you, take a few deep breaths and make each day the best that you can.

        Vermont_Donna, stage 3a, stable after 4 infusions of Ipi

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      FormerCaregiver
      Participant

      Just like to say a bit about treatments in general. As research is advancing rapidly, so are the
      treatments that may be offered. What was the best drug a few years ago is very likely to be
      outdated now.

      However, it is wise to be aware of the fact that many oncologists tend to be very conservative in
      what treatments they recommend. Therefore, they will usually suggest old therapies that they are
      most familiar with rather than trying to arrange to get you to be part of a clinical trial where
      better drugs are usually available.

      I found some good info about the stages of melanoma at:
      http://www.cancerhelp.org.uk/type/melanoma/treatment/stages-of-melanoma
      and
      http://www.cancerhelp.org.uk/type/melanoma/treatment/medium-stage-melanoma

      Hope that things will go well for you.

      Frank from Australia

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      shellebrownies
      Participant

      Boots,

      Hopefully, this Friday we will finally know my husband's staging, but he is at least a IIIc (we're hoping that's all it is and not Stage IV yet).

      It is not technically his first diagnosis because he had an in situ melanoma removed 2 years ago; but as he had been getting himself checked by a derm regularly after that (the recommended treatment after in situ, so I've been told), and never had a re-occurence, finding that he had it in his lymph nodes came as quite a shock.

      Obviously, we are not equipped to give you details about treatment, as we haven't started them yet, either, but I wanted to just let you know that you are not alone in what you're going through right now.

      There are many people on this site who have been successfully fighting stage 3 and 4 melanoma for years…and if they can do it, so can we, right?

      Michelle

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        Lisa13
        Participant

        I too have been Staged at 3c earlier this year, but I've been recently told by my surgical oncologist not to get too caught up in the letters of each stage.   

        As per the advice of 3 melanoma Dr's, I've opted for the clinical trial of ipi versus placebo. Interferon is used by many people, but it's also not being advocated as much now from oncologists considering all the new treatments that have become available.  There is no data as of yet that ipi will work well in an adjuvent setting, but  I do know that it has prolonged life in some Stage 4 patients and it's less toxic then interferon.  There doesn't seem to be many successful options for people with Stage 3 which is very frustrating and I think this is why many people opt for clinical trials with newer treatments.

        I agree that there are many people who are long term surviors with Stage 3 and some who havn't had a single reoccurence. I also know that there are Stage 4 survivors that are successfully NED for 2+ years. There is always hope for each and every one of us.

         

        Lisa

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        dawn dion
        Participant

        Lisa I was just trying to find out how to reach you – wanted to discuss the melatonin we were talking about a few weeks ago.  

        Hugs and Smiles

        Dawn

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        Lisa13
        Participant

        Hi Dawn,

         

        My email is [email protected] if you have any questions re: holistic stuff.  I take 3mg of melatonin and have been advised by my naturopath to increase my dose until I'm up to 20mg a day.  I was ready to start getting mistletoe injections, but since I've signed up for the ipi/placebo trial, I've been told to stop everything I'm taking so there's no interaction.

        Lisa 

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        Lisa13
        Participant

        Hi Dawn,

         

        My email is [email protected] if you have any questions re: holistic stuff.  I take 3mg of melatonin and have been advised by my naturopath to increase my dose until I'm up to 20mg a day.  I was ready to start getting mistletoe injections, but since I've signed up for the ipi/placebo trial, I've been told to stop everything I'm taking so there's no interaction.

        Lisa 

        Loading spinner
        dawn dion
        Participant

        Lisa I was just trying to find out how to reach you – wanted to discuss the melatonin we were talking about a few weeks ago.  

        Hugs and Smiles

        Dawn

        Loading spinner
        Lisa13
        Participant

        I too have been Staged at 3c earlier this year, but I've been recently told by my surgical oncologist not to get too caught up in the letters of each stage.   

        As per the advice of 3 melanoma Dr's, I've opted for the clinical trial of ipi versus placebo. Interferon is used by many people, but it's also not being advocated as much now from oncologists considering all the new treatments that have become available.  There is no data as of yet that ipi will work well in an adjuvent setting, but  I do know that it has prolonged life in some Stage 4 patients and it's less toxic then interferon.  There doesn't seem to be many successful options for people with Stage 3 which is very frustrating and I think this is why many people opt for clinical trials with newer treatments.

        I agree that there are many people who are long term surviors with Stage 3 and some who havn't had a single reoccurence. I also know that there are Stage 4 survivors that are successfully NED for 2+ years. There is always hope for each and every one of us.

         

        Lisa

        Loading spinner
      shellebrownies
      Participant

      Boots,

      Hopefully, this Friday we will finally know my husband's staging, but he is at least a IIIc (we're hoping that's all it is and not Stage IV yet).

      It is not technically his first diagnosis because he had an in situ melanoma removed 2 years ago; but as he had been getting himself checked by a derm regularly after that (the recommended treatment after in situ, so I've been told), and never had a re-occurence, finding that he had it in his lymph nodes came as quite a shock.

      Obviously, we are not equipped to give you details about treatment, as we haven't started them yet, either, but I wanted to just let you know that you are not alone in what you're going through right now.

      There are many people on this site who have been successfully fighting stage 3 and 4 melanoma for years…and if they can do it, so can we, right?

      Michelle

      Loading spinner
      Jim M.
      Participant

      I was initially diagnosed stage 3C in 11/2007. I had a tumor in the lymph nodes in the right axillary (armpit). I had an unknown primary and some ulceration. I had surgery to remove the tumor. Next I had 6 weeks of radiation on the tumor site. According to my onc. this decreased the chances of a local recurrence from 60 to 10%. Then I was given the option of Interferon, do nothing, or a clinical trial with MDX-010 (Ipilimumab/ Yervoy) and peptide vaccines. I decided on the clinical trial. I was on Ipi from 3/08 to 10/08 with a dose of 10mg/kg( I'm sure since it has been approved the dose given is less, like 3mg/kg). Ipi swelled my pituitary gland so I was taken off Ipi and given a steroid as a hormone replacement ( I've been on the steroid 2.5 years and haven't been able to taper off it). I am a responder to Ipi as it boosted my immune system at least 5 times over baseline. I also developed lymphedema in my right arm which is manageable. I'm feeling good, working full time and just go for follow-up scans.

       This is just my experience. As others have said there are different options. I'd recommend finding a melanoma specialist. My surgical onc. does LNDs on a regular basis which gave me comfort. I go to Moffitt Cancer Center in Tampa, Fl., a comprehensive cancer center. It is next to a university and thus is a research center.

      Much success and God Bless,

       Jim M.

       Stage 3C

      NED 3.5 years

      Loading spinner
        boot2aboot
        Participant

        the reason i ask this is that i thought interferon was standard treatment for the newly diagnosed…but not very effective for some people…my docs were thinking leucine and radiation combo, but i did not think it was aggressive enough…did you guys research this or just go with whatever the docs say…?

        if you did research…how did you determine what was right for you?

        i know i want to start treatment very very soon, but don't want to rush in and not get as effective treatment as i can…

         

        Jim,

        I am sooo happy to hear you are doing well…i am glad you are all doing so well as it gives me some encouragement….Your diagnosis and history are very similar to mine…did the radiation treatments cause lymphdema?

        i go to James Cancer in columbus and will get my second opinion at U of M…which i discussed with my ONC (she wanted me to go to sloan-but i didn't think i had time/money/friends-family for sloan

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        boot2aboot
        Participant

        Oh, and Jim, i totally understand your pit problem as i have a benign pit tumor and have hormones checked all time…i hope your pit comes back on line so you don't have to take your cortisol….that has to be pretty worrisome all in itself…

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        Jim M.
        Participant

        I got 4 other opinions after the initial consultation with my onc. Two of the doctors knew him and highly recommended him. Another doctor knew of his work and also recommended the clinical trial. I called another doc by phone who is into natural/ wholistic medicines. He recommended something else so I went with the majority.

         I think a combination of things gave me the lymphedema. I was told with surgery alone there's a 21% chance of getting it. The possibility increases to 42% if you add radiation. On the clinical trial I was given an iv in the right arm on 2 different occasions for the pheresis procedure ( Had I been smart I would have told them to stick me somewhere else). Then one day I was lifting some folding tables and that's when I noticed it. Someone else posted that only about 2-3% of patients get lymphedema.

         My endocrinologist said 50% of those on steroids ( I'm on Hydrocortisone) are able to taper off. After 2 years being on the steroid it's very unlikely to be able to get off it. It's a concern as steroids weaken the immune system. At least I'm not on a high dose but a normal hormone replacement dose. For the forseeable future it's something I have to live with.

         God Bless,

         Jim M.

        Loading spinner
        Jim M.
        Participant

        I got 4 other opinions after the initial consultation with my onc. Two of the doctors knew him and highly recommended him. Another doctor knew of his work and also recommended the clinical trial. I called another doc by phone who is into natural/ wholistic medicines. He recommended something else so I went with the majority.

         I think a combination of things gave me the lymphedema. I was told with surgery alone there's a 21% chance of getting it. The possibility increases to 42% if you add radiation. On the clinical trial I was given an iv in the right arm on 2 different occasions for the pheresis procedure ( Had I been smart I would have told them to stick me somewhere else). Then one day I was lifting some folding tables and that's when I noticed it. Someone else posted that only about 2-3% of patients get lymphedema.

         My endocrinologist said 50% of those on steroids ( I'm on Hydrocortisone) are able to taper off. After 2 years being on the steroid it's very unlikely to be able to get off it. It's a concern as steroids weaken the immune system. At least I'm not on a high dose but a normal hormone replacement dose. For the forseeable future it's something I have to live with.

         God Bless,

         Jim M.

        Loading spinner
        boot2aboot
        Participant

        Oh, and Jim, i totally understand your pit problem as i have a benign pit tumor and have hormones checked all time…i hope your pit comes back on line so you don't have to take your cortisol….that has to be pretty worrisome all in itself…

        Loading spinner
        boot2aboot
        Participant

        the reason i ask this is that i thought interferon was standard treatment for the newly diagnosed…but not very effective for some people…my docs were thinking leucine and radiation combo, but i did not think it was aggressive enough…did you guys research this or just go with whatever the docs say…?

        if you did research…how did you determine what was right for you?

        i know i want to start treatment very very soon, but don't want to rush in and not get as effective treatment as i can…

         

        Jim,

        I am sooo happy to hear you are doing well…i am glad you are all doing so well as it gives me some encouragement….Your diagnosis and history are very similar to mine…did the radiation treatments cause lymphdema?

        i go to James Cancer in columbus and will get my second opinion at U of M…which i discussed with my ONC (she wanted me to go to sloan-but i didn't think i had time/money/friends-family for sloan

        Loading spinner
      Jim M.
      Participant

      I was initially diagnosed stage 3C in 11/2007. I had a tumor in the lymph nodes in the right axillary (armpit). I had an unknown primary and some ulceration. I had surgery to remove the tumor. Next I had 6 weeks of radiation on the tumor site. According to my onc. this decreased the chances of a local recurrence from 60 to 10%. Then I was given the option of Interferon, do nothing, or a clinical trial with MDX-010 (Ipilimumab/ Yervoy) and peptide vaccines. I decided on the clinical trial. I was on Ipi from 3/08 to 10/08 with a dose of 10mg/kg( I'm sure since it has been approved the dose given is less, like 3mg/kg). Ipi swelled my pituitary gland so I was taken off Ipi and given a steroid as a hormone replacement ( I've been on the steroid 2.5 years and haven't been able to taper off it). I am a responder to Ipi as it boosted my immune system at least 5 times over baseline. I also developed lymphedema in my right arm which is manageable. I'm feeling good, working full time and just go for follow-up scans.

       This is just my experience. As others have said there are different options. I'd recommend finding a melanoma specialist. My surgical onc. does LNDs on a regular basis which gave me comfort. I go to Moffitt Cancer Center in Tampa, Fl., a comprehensive cancer center. It is next to a university and thus is a research center.

      Much success and God Bless,

       Jim M.

       Stage 3C

      NED 3.5 years

      Loading spinner
      s Mom
      Participant

      Sorry to hear about your diagnosis – I know how hard it is to hear those words… that's how it was for us when we learned of our son's situation.  He was recently diagnosed at Stage 3C in January.  He is now on his last week of high dose Interferon and experiencing every nasty side effect in the book.  Choosing Interferon was a pretty tough decision for him – he did not have many "good" options.   At least he is making it through this tough month of daily infusions, and if he is one of the lucky ones who responds, then it will be worth it – short term pain for long-term gain.  There aren't a whole lot of choices for those who are Stage 3, but this is the best place to get information. It's been a great resource for me as I try to learn as much as I can about this disease.  I wish you the best and you are in my prayers.

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        Vermont_Donna
        Participant

        Dear Boots,

        Radiation followed by 7 months of Leukine was my "second " round of treatment, after I developed a re-occurence 11 months after I finished 11 months of the low dose injections of Interferon (see my profile for history). I had some problems with my skin after the radiation (5.5 weeks of daily radiation), and I ended up in the hospital for 5 days. I was able to work through the Leukine injections…pretty much just had a large itchy welt at the injection site. Leukine, as is Interferon, and Ipilimumab, are IMMUNOTHERAPIES…….they work to boost your own bodies immune system to attack and get rid of the melanoma. As you can see by reading the many posts, many people respond to one treatment but not another. It is difficult to predict how one will do on a certain course of treatment. 

         I was referred to a melanoma oncologist with many years experience at a major medical center 90 miles from me, which has an excellent reputation. I met the oncologist for that first appointment, and liked how we interrelated, what he thought about my stage of diagnosis (3a), and all my other health issues and what he recommended as best course of treatment given me and given his professional knowledge and experience. I have never regretted my treatment choices and choice of melanoma oncologist.

        Good luck with your treatment decision making.

        Vermont_Donna, stage 3a

         

        Loading spinner
        Vermont_Donna
        Participant

        Dear Boots,

        Radiation followed by 7 months of Leukine was my "second " round of treatment, after I developed a re-occurence 11 months after I finished 11 months of the low dose injections of Interferon (see my profile for history). I had some problems with my skin after the radiation (5.5 weeks of daily radiation), and I ended up in the hospital for 5 days. I was able to work through the Leukine injections…pretty much just had a large itchy welt at the injection site. Leukine, as is Interferon, and Ipilimumab, are IMMUNOTHERAPIES…….they work to boost your own bodies immune system to attack and get rid of the melanoma. As you can see by reading the many posts, many people respond to one treatment but not another. It is difficult to predict how one will do on a certain course of treatment. 

         I was referred to a melanoma oncologist with many years experience at a major medical center 90 miles from me, which has an excellent reputation. I met the oncologist for that first appointment, and liked how we interrelated, what he thought about my stage of diagnosis (3a), and all my other health issues and what he recommended as best course of treatment given me and given his professional knowledge and experience. I have never regretted my treatment choices and choice of melanoma oncologist.

        Good luck with your treatment decision making.

        Vermont_Donna, stage 3a

         

        Loading spinner
      s Mom
      Participant

      Sorry to hear about your diagnosis – I know how hard it is to hear those words… that's how it was for us when we learned of our son's situation.  He was recently diagnosed at Stage 3C in January.  He is now on his last week of high dose Interferon and experiencing every nasty side effect in the book.  Choosing Interferon was a pretty tough decision for him – he did not have many "good" options.   At least he is making it through this tough month of daily infusions, and if he is one of the lucky ones who responds, then it will be worth it – short term pain for long-term gain.  There aren't a whole lot of choices for those who are Stage 3, but this is the best place to get information. It's been a great resource for me as I try to learn as much as I can about this disease.  I wish you the best and you are in my prayers.

      Loading spinner
      djpayn
      Participant

      boot,

      I was initially diagnosed at 3c in june of 2008 – went out of state to a fantastic melanoma specialist ( the same dr.s that Vermont_Donna was speaking of) and have NEVER regretted my decision to leave my home to be under his care. I currently go to Moffitt in Tampa.

       

      In 2008 – the only real choices to start with were Surgery, radiation, and interferon. That is what i did and i have remained NED ever since.  

      What the people above are saying is so incredibly true. There have been many new drugs and treatments available in the past year and for some interferon isnt the best or only way to go anymore. We can tell you what worked for each of us, but please understand that while my treatments may have worked for me – another warrior diagnosed around the same time as me who did the exact same treatments as me, has had multiple recurrences and has advanced to stage 4. 

       

      I am in no way trying to scare you, just trying to state the obvious. What works for one, may not work for others. All you can do is gather the information and make the decision that best fits your life and one that you can live with.

       

      I hope your journey with melanoma is short and painless. Sorry you are a part of the club, but glad you are getting the advice from the people on this board. Many will become friends in the future.  

      Loading spinner
      djpayn
      Participant

      boot,

      I was initially diagnosed at 3c in june of 2008 – went out of state to a fantastic melanoma specialist ( the same dr.s that Vermont_Donna was speaking of) and have NEVER regretted my decision to leave my home to be under his care. I currently go to Moffitt in Tampa.

       

      In 2008 – the only real choices to start with were Surgery, radiation, and interferon. That is what i did and i have remained NED ever since.  

      What the people above are saying is so incredibly true. There have been many new drugs and treatments available in the past year and for some interferon isnt the best or only way to go anymore. We can tell you what worked for each of us, but please understand that while my treatments may have worked for me – another warrior diagnosed around the same time as me who did the exact same treatments as me, has had multiple recurrences and has advanced to stage 4. 

       

      I am in no way trying to scare you, just trying to state the obvious. What works for one, may not work for others. All you can do is gather the information and make the decision that best fits your life and one that you can live with.

       

      I hope your journey with melanoma is short and painless. Sorry you are a part of the club, but glad you are getting the advice from the people on this board. Many will become friends in the future.  

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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.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.