The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Stage 3a newcomer, seeking advice/support

Forums General Melanoma Community Stage 3a newcomer, seeking advice/support

  • Post
    Solodad
    Participant

     

    Hello,

     

    Hello,

    I posted this on Cancer Compass, then found this board. Seems like maybe a melanoma-specific board might be worth a try. Anyway, here's my story.

    In July of 2010, the removal of a mole on my left bicep led to a stage IIIa diagnosis (one lymph node with 1mm focus of cancer cells). Had the SNB, then a full axillary node removal from left armpit (no positive nodes there). I did not do the Interferon for reasons I won't go into here, but radically changed my diet and added various supplements which supposedly are beneficial. (AHCC, Astragalus, AveUltra, Vitamin D, Modified  Citrus Pectin, Boswellin, Bromelain, Beta Glucans, Reishi and Maitake capsules, Melatonin, Flax oil and flax seed, juicing (vegetable and fruit), broccoli sprouts, organic produce, no meat, no cheese, no processed food, no soda, no sugar, no alcohol, etc. etc. etc.) 

    The thing is, I can't think of anything else but melanoma for more than a few minutes at a time. I feel constantly worried and on the verge of bursting out in tears. I'm constantly researching one thing or another about melanoma online and it pretty much always turns out to be more bad news. Every little twinge or ache in my body makes me worry. I keep having regrets about not doing the Interferon treatment, and wonder if there is anything else I could be doing. The clinicaltrials.gov website always turns out to be a total waste of time, since there's either nothing for which I qualify (a good thing, I suppose), or it's so far away and so complicated that it won't work for me, or there's no guarantee I'd even get what they're testing. Worst of all is the thought of not being around for my young son, who doesn't even know what's going on with me yet.

    I guess I'm just looking for some feedback, some advice or support, or some… well, I don't know. I don't have anyone with me or near me to give me a pep talk or clue me in on things I should be aware of. I thought maybe just hearing from others might help  somehow. How do you "disconnect" your mind from melanoma? How do you turn off the worry?

    – solodad

    Loading spinner
Viewing 23 reply threads
  • Replies
      lhaley
      Participant

      I'm sorry you've had to join us But I think you will find a wealth of information here and lots of support.

      If' you go back a few pages you will find a post where many stage IV survivors have posted. While many just stop by every once and awhile and check in, there are many here that are doing well. We also have many stage 3 survivors. Doing interfuron is a personal choice. You have to make your decision and then not look backwards.

      What your going through right now is normal! All of us here worry about the little twinges of pain ect. We then contact each other and are reminded that normal health issues are usually the cause. It does sound like you might want to consider an antidepressant or just someone to talk to. 

      I've been stage 4 since 06. After a recent recurrance I joined a local support group (all different types of cancer). We've had sessions on journaling, meditation and other topics. In the last few weeks I've had another issue show on a scan and I have to tell you I've handled it so much better since I've gotten into this group.

      It's very frustrating that their aren't many options. I've been NED off and on during these past 4 years and I know at times it's been a difficult decision if I should go with surgery and become NED again or try something systemic. So far I've chosen the surgery route.

      Please fill out your profile so we can see where you are from. Are you being seen by a melanoma specialist? This past year showed more success than in the past with research and hopefully this year we will see even more success.

      Your not alone,

      Linda

      Loading spinner
      lhaley
      Participant

      I'm sorry you've had to join us But I think you will find a wealth of information here and lots of support.

      If' you go back a few pages you will find a post where many stage IV survivors have posted. While many just stop by every once and awhile and check in, there are many here that are doing well. We also have many stage 3 survivors. Doing interfuron is a personal choice. You have to make your decision and then not look backwards.

      What your going through right now is normal! All of us here worry about the little twinges of pain ect. We then contact each other and are reminded that normal health issues are usually the cause. It does sound like you might want to consider an antidepressant or just someone to talk to. 

      I've been stage 4 since 06. After a recent recurrance I joined a local support group (all different types of cancer). We've had sessions on journaling, meditation and other topics. In the last few weeks I've had another issue show on a scan and I have to tell you I've handled it so much better since I've gotten into this group.

      It's very frustrating that their aren't many options. I've been NED off and on during these past 4 years and I know at times it's been a difficult decision if I should go with surgery and become NED again or try something systemic. So far I've chosen the surgery route.

      Please fill out your profile so we can see where you are from. Are you being seen by a melanoma specialist? This past year showed more success than in the past with research and hopefully this year we will see even more success.

      Your not alone,

      Linda

      Loading spinner
      EmilyandMike
      Participant

      So glad you came to the forum!  As I told you, you need a support system and you have come to the right place.  We all understand to some degree or another, what you are feeling.  Melanoma is truly the worst in terms of mental torture, limited treatment choices, etc.  I felt so hopeless for months and months after Mike's diagnosis… but slowly you get used to your new existence and 18 mos later we are happy and at a place where melanoma doesnt constantly haunt us.  I know it is especially hard for you and your fear of leaving your son alone.   But you are not alone. And drowning yourself in worry about the "what ifs" does nothing for us but make us miserable!   Take it one day at a time….I know it is all much easier said then done.  It truly beleive that this will get easier for you to deal with mentally.

      Best,

      Em

      http://www.emandmichael.com

      Loading spinner
      EmilyandMike
      Participant

      So glad you came to the forum!  As I told you, you need a support system and you have come to the right place.  We all understand to some degree or another, what you are feeling.  Melanoma is truly the worst in terms of mental torture, limited treatment choices, etc.  I felt so hopeless for months and months after Mike's diagnosis… but slowly you get used to your new existence and 18 mos later we are happy and at a place where melanoma doesnt constantly haunt us.  I know it is especially hard for you and your fear of leaving your son alone.   But you are not alone. And drowning yourself in worry about the "what ifs" does nothing for us but make us miserable!   Take it one day at a time….I know it is all much easier said then done.  It truly beleive that this will get easier for you to deal with mentally.

      Best,

      Em

      http://www.emandmichael.com

      Loading spinner
        2atlascedars
        Participant
        Hi Solodad,

        Sorry to hear of your troubles, but you are doing the right thing seeking out others to help you through these difficult times. Like you, I didn’t have much support from my initial dianosis until my SNB results came back. They were negative (thank God)…but those days of waiting were 33 of the worst days I have ever endured. I made the personal decision not to tell friends or family until I knew what I was dealing with, to avoid having them suffer as i was suffering…fearing the worst. I got thru it with the help of this site. Here you will be able to ask questions and get very helpful and insightful answers. Also, you can see all that people have been through and are still fighting like hell. The stories don’t always end well, but that just serves to put what you personally are dealing with in perspective. 

        Best of all, you can read the profiles, and even search for key terms to find people who are in similar circumstances. Seeing their profile, posts, and comments is as comforting as it is educational. At this point, the best thing you can do for yourself and your family is to educate yourself. Aside from early detection, education is the single most critical thing we can do to advocate for our own care…for our very lives. 

        It can also be very therapeutic to give back something to this site by sharing your personal knowledge or experience with others. For instance, your diet regimen is quite impressive. Perhaps you could begin by offering tips on how to get this started. For me, I am a young, single guy whose idea of cooking doesn’t extend too far beyond a microwave oven. I know I should make major changes to my diet and food preparation, but the challenge of this just seems quite insurmountable to me. I don’t even know where to begin to find all of these new exotic ingredients, let alone figure out how to prepare them.
         
        By the way…you are not alone. Over 60,000 Americans receive this diagnosis every year. Thankfully, most turn out to be stage 1 or 2, but that still leave a lot of people for whom you have something in common, and who could potentially learn something helpful from you.

        Best regards, 
        Mark (Stage 2A) from California

        Loading spinner
        2atlascedars
        Participant
        Hi Solodad,

        Sorry to hear of your troubles, but you are doing the right thing seeking out others to help you through these difficult times. Like you, I didn’t have much support from my initial dianosis until my SNB results came back. They were negative (thank God)…but those days of waiting were 33 of the worst days I have ever endured. I made the personal decision not to tell friends or family until I knew what I was dealing with, to avoid having them suffer as i was suffering…fearing the worst. I got thru it with the help of this site. Here you will be able to ask questions and get very helpful and insightful answers. Also, you can see all that people have been through and are still fighting like hell. The stories don’t always end well, but that just serves to put what you personally are dealing with in perspective. 

        Best of all, you can read the profiles, and even search for key terms to find people who are in similar circumstances. Seeing their profile, posts, and comments is as comforting as it is educational. At this point, the best thing you can do for yourself and your family is to educate yourself. Aside from early detection, education is the single most critical thing we can do to advocate for our own care…for our very lives. 

        It can also be very therapeutic to give back something to this site by sharing your personal knowledge or experience with others. For instance, your diet regimen is quite impressive. Perhaps you could begin by offering tips on how to get this started. For me, I am a young, single guy whose idea of cooking doesn’t extend too far beyond a microwave oven. I know I should make major changes to my diet and food preparation, but the challenge of this just seems quite insurmountable to me. I don’t even know where to begin to find all of these new exotic ingredients, let alone figure out how to prepare them.
         
        By the way…you are not alone. Over 60,000 Americans receive this diagnosis every year. Thankfully, most turn out to be stage 1 or 2, but that still leave a lot of people for whom you have something in common, and who could potentially learn something helpful from you.

        Best regards, 
        Mark (Stage 2A) from California

        Loading spinner
      kateboston
      Participant

      Hi solodad,

      I'm also stage 3a and was diagnosed only a month before you. I did the HD Interferon in Sept & October. I had been doing maintenance but my oncologist stopped it as I experienced retinal changes & they didn't want it to further deteriorate my eyes.

      I know this isn't probably much consolation, but right after I finished my month of HD Interferon I had a VERY tough time. I expected life to go back to "normal" and unfortunately it didn't. I didn't feel like myself and it seemed like everyone around me was having such great things going on in their lives and here I am – 30 years old & worrying about cancer at all hours of the day. I also couldn't keep it off my mind, was constantly researching on the internet, would break out into tears randomly at work. It's been a lot harder than I thought it was going to be.

      The good part is that slowly but surely it's getting better. The tears have slowed down and I don't obssess as much. Now that I've stopped Interferon completely I'm starting to feel like myself again. There's no question this is awful & hopefully your battle with melanoma is over. Everyone would tell me that only time would make it easier, and unfortunately, it's true.

      Don't be afraid to seek out a therapist or psychologist – sometimes having an impartial 3rd party to talk to is the best medicine.

      You are not alone in this and what you are going through is completely normal. Best of luck and I hope time starts to heal you.

      – Kate

      Loading spinner
      kateboston
      Participant

      Hi solodad,

      I'm also stage 3a and was diagnosed only a month before you. I did the HD Interferon in Sept & October. I had been doing maintenance but my oncologist stopped it as I experienced retinal changes & they didn't want it to further deteriorate my eyes.

      I know this isn't probably much consolation, but right after I finished my month of HD Interferon I had a VERY tough time. I expected life to go back to "normal" and unfortunately it didn't. I didn't feel like myself and it seemed like everyone around me was having such great things going on in their lives and here I am – 30 years old & worrying about cancer at all hours of the day. I also couldn't keep it off my mind, was constantly researching on the internet, would break out into tears randomly at work. It's been a lot harder than I thought it was going to be.

      The good part is that slowly but surely it's getting better. The tears have slowed down and I don't obssess as much. Now that I've stopped Interferon completely I'm starting to feel like myself again. There's no question this is awful & hopefully your battle with melanoma is over. Everyone would tell me that only time would make it easier, and unfortunately, it's true.

      Don't be afraid to seek out a therapist or psychologist – sometimes having an impartial 3rd party to talk to is the best medicine.

      You are not alone in this and what you are going through is completely normal. Best of luck and I hope time starts to heal you.

      – Kate

      Loading spinner
      washoegal
      Participant

      HI,

      I too am stage 3a, I was diagnosed in March 2010.  I chose not to do interferon also.  Last set of scans in Sept were clear. 

      Have I disconnected from mel? no.  Do I regret my decision not to do interferon? absolutely not.  I live with mel ( or the possiblity of it) every day.  But I feel as though I have done what was needed and I will continue to do what is required.  I have never looked back, and the past 9 months have been great!  So what am I going to do in the future, I take some of the supplements you mentioned.  I am on time for my scans, I use sunscreen (didn't even get very tan when I went to Egypt) and see my derm. 

      I am probably more in tune with my body now than I was before mel, but I look at that as a good thing.  If something worries I see my doctor, most of the time they smile at me and say I've been though a lot and tell me it's nothing (that's happed three time already).  So OK feeling like a fool is better that worring myself into an early grave. 

      Everything you are feeling is normal.  It gets easier with time, but I think we will always have a little of it and maybe that is a good thing.

       

      Mary

      Stage 3

      Loading spinner
      washoegal
      Participant

      HI,

      I too am stage 3a, I was diagnosed in March 2010.  I chose not to do interferon also.  Last set of scans in Sept were clear. 

      Have I disconnected from mel? no.  Do I regret my decision not to do interferon? absolutely not.  I live with mel ( or the possiblity of it) every day.  But I feel as though I have done what was needed and I will continue to do what is required.  I have never looked back, and the past 9 months have been great!  So what am I going to do in the future, I take some of the supplements you mentioned.  I am on time for my scans, I use sunscreen (didn't even get very tan when I went to Egypt) and see my derm. 

      I am probably more in tune with my body now than I was before mel, but I look at that as a good thing.  If something worries I see my doctor, most of the time they smile at me and say I've been though a lot and tell me it's nothing (that's happed three time already).  So OK feeling like a fool is better that worring myself into an early grave. 

      Everything you are feeling is normal.  It gets easier with time, but I think we will always have a little of it and maybe that is a good thing.

       

      Mary

      Stage 3

      Loading spinner
      dian in spokane
      Participant

      Hi Solodad,

      I use music. If you have a creative side, art, writing, music, it's a great way to help get your mind away from melanoma.

      I see that you've done a lot to change your diet and lifestyle, do you meditate? If you haven't yet, I'd recommend you look into Guided Imagery (you can google it!) or the books of Martin Rossman, "Fighting Cancer from Within" and "Healing Yourself"

      And, for some, religion is a great source of comfort and optimism.

      I think ~laughter~ is important too, and that's very difficult if one is thinking constantly of melanoma. But maybe try actively seeking out something that makes you laugh. It's a wonderful release.

      I find it helpful to remind myself that there are no guarantees, that we only have today, this very moment, to live, and living IN the moment is very important. And I also feel like the more time I dwell on melanoma, the more IT is winning and not ME. I feel like I am cheating melanoma if I am busy loving and living, and I feel like melanoma is cheating me if I dwell on it. So I turn my mind away from it as often as possible

      Loading spinner
      dian in spokane
      Participant

      Hi Solodad,

      I use music. If you have a creative side, art, writing, music, it's a great way to help get your mind away from melanoma.

      I see that you've done a lot to change your diet and lifestyle, do you meditate? If you haven't yet, I'd recommend you look into Guided Imagery (you can google it!) or the books of Martin Rossman, "Fighting Cancer from Within" and "Healing Yourself"

      And, for some, religion is a great source of comfort and optimism.

      I think ~laughter~ is important too, and that's very difficult if one is thinking constantly of melanoma. But maybe try actively seeking out something that makes you laugh. It's a wonderful release.

      I find it helpful to remind myself that there are no guarantees, that we only have today, this very moment, to live, and living IN the moment is very important. And I also feel like the more time I dwell on melanoma, the more IT is winning and not ME. I feel like I am cheating melanoma if I am busy loving and living, and I feel like melanoma is cheating me if I dwell on it. So I turn my mind away from it as often as possible

      Loading spinner
      JakeinNY
      Participant

      Hi,

      As a fellow stage 3er, I'd like to say that I'm 3 years NED after surgery to remove the affected lymph node and then the radical neck dissection to remove 25 others that were all negative. Had radiation to the original site and sentinel lymph node and then decided against interferon as my oncologist offered it but was not a big fan of it. Look up the statistics on Interferon. It can be very rough and the benefits are not very large, but there may be some benefit. Research carefully and then decide. See if anyone is offering any promising vaccines. If you decide to do nothing, stick with the lifestyle changes…keep taking care of your body (especially with the organic veggies and limit the fruit to ones that don't spike your insulin if you can). I know nothing about supplements but I've taken the "whole foods" approach, along with going back to church, doing massage, reiki (thru a close friend), and doing the things that i normally do. Sure, I miss not eating ice cream and pizza (I did have one slice about 6 months ago) but I'm eating to live, not living to eat. You should check out those supplements with someone that is really up on those for melanoma. But remember to take care of your mind as well. Keep your stress down. Enjoy life…you may be around for a long time. Do your research, and once that is done for the day, enjoy life, laugh, love, be active. Take care of your body, mind, and spirit. I've had pains in my head, chest, stomach, bones, at timesbut for 3 and 1/4 years (knock on wood) I've been NED. I'm sure that it has all been anxiety, which I've had a problem with all of my life. Feed your body, mind, and spirit with the right things and be positive. Best wishes for a long life.

      Loading spinner
      JakeinNY
      Participant

      Hi,

      As a fellow stage 3er, I'd like to say that I'm 3 years NED after surgery to remove the affected lymph node and then the radical neck dissection to remove 25 others that were all negative. Had radiation to the original site and sentinel lymph node and then decided against interferon as my oncologist offered it but was not a big fan of it. Look up the statistics on Interferon. It can be very rough and the benefits are not very large, but there may be some benefit. Research carefully and then decide. See if anyone is offering any promising vaccines. If you decide to do nothing, stick with the lifestyle changes…keep taking care of your body (especially with the organic veggies and limit the fruit to ones that don't spike your insulin if you can). I know nothing about supplements but I've taken the "whole foods" approach, along with going back to church, doing massage, reiki (thru a close friend), and doing the things that i normally do. Sure, I miss not eating ice cream and pizza (I did have one slice about 6 months ago) but I'm eating to live, not living to eat. You should check out those supplements with someone that is really up on those for melanoma. But remember to take care of your mind as well. Keep your stress down. Enjoy life…you may be around for a long time. Do your research, and once that is done for the day, enjoy life, laugh, love, be active. Take care of your body, mind, and spirit. I've had pains in my head, chest, stomach, bones, at timesbut for 3 and 1/4 years (knock on wood) I've been NED. I'm sure that it has all been anxiety, which I've had a problem with all of my life. Feed your body, mind, and spirit with the right things and be positive. Best wishes for a long life.

      Loading spinner
      Barb
      Participant

      Not sure if this is true.But thought I would share with you.I take alot of supplements and try to read up on other supplements that I do not take to see if they would be beneficial?

      Modified Citrus Pectin

      Description

      Modified citrus pectin (MCP) is a form of pectin that has been altered so that it can be more easily absorbed by the digestive tract. Pectin is a carbohydrate that is made of hundreds or thousands of sugar molecules chemically linked together. It is found in most plants and is particularly plentiful in the peels of apples, citrus fruits, and plums. In modified citrus pectin, the pectin has been chemically altered to break its molecules into smaller pieces. Pectin in its natural form cannot be absorbed by the body and is considered a type of soluble dietary fiber, whereas modified pectin can be absorbed into the bloodstream.

      Overview

      Animal studies and a couple of uncontrolled human studies have found that MCP may inhibit the spread of prostate cancer and melanoma to other organs. However, there have been no controlled clinical studies to prove this effect in humans. 

      Loading spinner
      Barb
      Participant

      Not sure if this is true.But thought I would share with you.I take alot of supplements and try to read up on other supplements that I do not take to see if they would be beneficial?

      Modified Citrus Pectin

      Description

      Modified citrus pectin (MCP) is a form of pectin that has been altered so that it can be more easily absorbed by the digestive tract. Pectin is a carbohydrate that is made of hundreds or thousands of sugar molecules chemically linked together. It is found in most plants and is particularly plentiful in the peels of apples, citrus fruits, and plums. In modified citrus pectin, the pectin has been chemically altered to break its molecules into smaller pieces. Pectin in its natural form cannot be absorbed by the body and is considered a type of soluble dietary fiber, whereas modified pectin can be absorbed into the bloodstream.

      Overview

      Animal studies and a couple of uncontrolled human studies have found that MCP may inhibit the spread of prostate cancer and melanoma to other organs. However, there have been no controlled clinical studies to prove this effect in humans. 

      Loading spinner
      Solodad
      Participant

      I want to thank all of you who responded to my post. There are some of you I would like to respond to personally, but I have not figured out how to do that yet. 

      Loading spinner
      Solodad
      Participant

      I want to thank all of you who responded to my post. There are some of you I would like to respond to personally, but I have not figured out how to do that yet. 

      Loading spinner
      SusanE
      Participant

      Hi Solodad. Hang in there.  I understand what you are going through. I check this board most every day.

       

      As far as contacting, click on the poster's name in green to get to the profile of that person, there will then be a Contact tab if they have their contact info input, you can then email.

       

      Take care,

      Susan, wife of Jerry Stage III

      Loading spinner
      SusanE
      Participant

      Hi Solodad. Hang in there.  I understand what you are going through. I check this board most every day.

       

      As far as contacting, click on the poster's name in green to get to the profile of that person, there will then be a Contact tab if they have their contact info input, you can then email.

       

      Take care,

      Susan, wife of Jerry Stage III

      Loading spinner
      Gracie
      Participant

      Dear solodad:

      I totally know how you are feeling while struggling to keep thoughts of melanoma and an uncertain future at bay.  I am stage 3b  and in a trial study for ipilimumab.  I may be getting the placibo and it could drive me crazy to think a placebo is doing nothing to control any mutating cancer cells.  Well I have come a long way in controlling my thoughts.  First I found a wonderful cancer support group at our local hospital.  I learned about the stages of grief in dealing with a cancer diagnosis.  How it is all normal as we morph into having a new outlook on life around us and love life in a new way.  Second, I looked at all the wonderful things around me including my family and opportunities to learn and experience tons in this life and realized that "cancer is in my life but is NOT my life."  I realized I was spending way too much time thinking about the "what ifs" rather than relishing each minute of every day. I decided that being happy is the best feeling and cure for worry.  I try to laugh as much as possible and serve others to make sure I do not get too full of myself and my situation, always looking over my shoulder for melanoma.  I can't control the cancer but I can control how I feel in my heart about all the beauty around me and how I choose to live my life.  I don't want to waste any time thinking scary thoughts, if the cancer is going to come back, I will deal with it then.

      What you are experiencing is totally normal especially with a young child. I would like to recommend a book or CD that was recommended to me by a nurse on my cancer team called, When Things Fall Apart, Heart Advice for Difficult Times,  by Pema Chodron. It taught me how to control my fears and not let them control me.

      I wish you so much peace.

      Gracie 3b

      Loading spinner
      Gracie
      Participant

      Dear solodad:

      I totally know how you are feeling while struggling to keep thoughts of melanoma and an uncertain future at bay.  I am stage 3b  and in a trial study for ipilimumab.  I may be getting the placibo and it could drive me crazy to think a placebo is doing nothing to control any mutating cancer cells.  Well I have come a long way in controlling my thoughts.  First I found a wonderful cancer support group at our local hospital.  I learned about the stages of grief in dealing with a cancer diagnosis.  How it is all normal as we morph into having a new outlook on life around us and love life in a new way.  Second, I looked at all the wonderful things around me including my family and opportunities to learn and experience tons in this life and realized that "cancer is in my life but is NOT my life."  I realized I was spending way too much time thinking about the "what ifs" rather than relishing each minute of every day. I decided that being happy is the best feeling and cure for worry.  I try to laugh as much as possible and serve others to make sure I do not get too full of myself and my situation, always looking over my shoulder for melanoma.  I can't control the cancer but I can control how I feel in my heart about all the beauty around me and how I choose to live my life.  I don't want to waste any time thinking scary thoughts, if the cancer is going to come back, I will deal with it then.

      What you are experiencing is totally normal especially with a young child. I would like to recommend a book or CD that was recommended to me by a nurse on my cancer team called, When Things Fall Apart, Heart Advice for Difficult Times,  by Pema Chodron. It taught me how to control my fears and not let them control me.

      I wish you so much peace.

      Gracie 3b

      Loading spinner
      MartyW
      Participant

      I read your story with great empathy.  As a newly diagnosed 3a, I share  your feelings exactly.  Mine is the same old story.  The spot on the arm leads to a biopsy and then that dreaded phone call from the dermatologist, informing you that you have melanoma, and it needs to be resected ASAP.  Given the long delays in getting appointments, mine was not resected for several weeks after the first diagnosis when it became a 3a and the sentinel node biopsy showed a very small bit of melanoma.  That led to a PET scan which shows a kidney mass which was recently biopsied.  I am scheduled for surgery in about 10 days to remove the kidney mass and resect the remaining axillary lymph nodes.

      I am chosing not to go the interferon route as I also have charot-marie-tooth a genetic neurological condition manifested by a variety of neurological symptoms which are not disabling but when combined with the likely side effects of interferon would be considered disabling so I am going to take my chances with periodical scans and followup observation at 3 month intervals.  I am fascinated by the  reputed success of the Gersen diet.  Has anyone out there tried it, or do you know anything about it from personal experience?

      I find myself expending significant energy in worry, anxiety, thinking about  the big M for many waking hours during the day.  I am trying to learn how to live with fear.  There are periodic quick tears and I must admit I am scared.  I do not want this thing to be a death sentence.  Life is too precious.  I would love to hear from those of you who are having success with dietary changes.  We will all take all the support we can get and can give to each other.

      Marty

      Loading spinner
      MartyW
      Participant

      I read your story with great empathy.  As a newly diagnosed 3a, I share  your feelings exactly.  Mine is the same old story.  The spot on the arm leads to a biopsy and then that dreaded phone call from the dermatologist, informing you that you have melanoma, and it needs to be resected ASAP.  Given the long delays in getting appointments, mine was not resected for several weeks after the first diagnosis when it became a 3a and the sentinel node biopsy showed a very small bit of melanoma.  That led to a PET scan which shows a kidney mass which was recently biopsied.  I am scheduled for surgery in about 10 days to remove the kidney mass and resect the remaining axillary lymph nodes.

      I am chosing not to go the interferon route as I also have charot-marie-tooth a genetic neurological condition manifested by a variety of neurological symptoms which are not disabling but when combined with the likely side effects of interferon would be considered disabling so I am going to take my chances with periodical scans and followup observation at 3 month intervals.  I am fascinated by the  reputed success of the Gersen diet.  Has anyone out there tried it, or do you know anything about it from personal experience?

      I find myself expending significant energy in worry, anxiety, thinking about  the big M for many waking hours during the day.  I am trying to learn how to live with fear.  There are periodic quick tears and I must admit I am scared.  I do not want this thing to be a death sentence.  Life is too precious.  I would love to hear from those of you who are having success with dietary changes.  We will all take all the support we can get and can give to each other.

      Marty

      Loading spinner
      JerryfromFauq
      Participant

      I didn't feel comfortable with Interferon and refused it to.  Didn't like its record.

      The biggest addition I see that you could add to supplements would be tumeric extract (95% Curcumin).It seems that it takes about a year for the worst of the fears and worrying to go ease greatly for  stages 1-3.  You are doing the right thing talking with people on this board.  They are wonderful people that understand what most are going thru.  I urge vigilance, not paranoia.  Learning about this disease especially on this board teaches one that Melanoma is indeed a serious and too often a deadly one, BUT it wins too early if we let it be our life totally.  It may never win, even if some of us have not really been NED since initially discovery.  Charlie has fought melanoma for over twenty years, Fifteen years of that as active stage IV.  I've only been diagnosed 5 years with 4 1/2 of that as active stage IV.  Other stage III and Iv people have been NED for many years and even decades. We never forget it totally, but often concentrate on other things necessary for continuing life. We also tend to talk about melanoma to warn others and to get increased research conducted.

         Take a deep breath and work on life for that youn one.

       

      JerryfromFauq  (Non-NED Stage IV and going on with life.)

      Loading spinner
      JerryfromFauq
      Participant

      I didn't feel comfortable with Interferon and refused it to.  Didn't like its record.

      The biggest addition I see that you could add to supplements would be tumeric extract (95% Curcumin).It seems that it takes about a year for the worst of the fears and worrying to go ease greatly for  stages 1-3.  You are doing the right thing talking with people on this board.  They are wonderful people that understand what most are going thru.  I urge vigilance, not paranoia.  Learning about this disease especially on this board teaches one that Melanoma is indeed a serious and too often a deadly one, BUT it wins too early if we let it be our life totally.  It may never win, even if some of us have not really been NED since initially discovery.  Charlie has fought melanoma for over twenty years, Fifteen years of that as active stage IV.  I've only been diagnosed 5 years with 4 1/2 of that as active stage IV.  Other stage III and Iv people have been NED for many years and even decades. We never forget it totally, but often concentrate on other things necessary for continuing life. We also tend to talk about melanoma to warn others and to get increased research conducted.

         Take a deep breath and work on life for that youn one.

       

      JerryfromFauq  (Non-NED Stage IV and going on with life.)

      Loading spinner
        MartyW
        Participant

        Thanks, Jerry, for your words of comfort.  Keep in touch.

        MartyW

        Loading spinner
        MartyW
        Participant

        Thanks, Jerry, for your words of comfort.  Keep in touch.

        MartyW

        Loading spinner
Viewing 23 reply threads
  • You must be logged in to reply to this topic.
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.