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.

Melenoma SUCKS!!!!

Forums General Melanoma Community Melenoma SUCKS!!!!

  • Post
    dawn dion
    Participant

    Good Morning All,

    I am rather new to this board and I was told 2 weeks ago that I am stage IV.  I posted the other day that I tested positive for B-RAF.  Wooo Hooo, I guess.  I have been doing a lot of reading on this and while I know this offers hope to a lot of us and I am glad that I can be on the boat – if you have to be on one,  for someone to say you can be NED for 8 months kind of ticks me off.    I go back to Dr. on Thursday to discuss the "next step".  

    Good Morning All,

    I am rather new to this board and I was told 2 weeks ago that I am stage IV.  I posted the other day that I tested positive for B-RAF.  Wooo Hooo, I guess.  I have been doing a lot of reading on this and while I know this offers hope to a lot of us and I am glad that I can be on the boat – if you have to be on one,  for someone to say you can be NED for 8 months kind of ticks me off.    I go back to Dr. on Thursday to discuss the "next step".  

    Anyway that being said I would like to pose a question to everyone out there.   Have any of you ever thought of  changing your life styles to going RAW?  Here is why I ask – I know three individuals who have no NED from Melenoma, Hodgkins Lymphoma and Breast Cancer all Stage IV, by doing this.   Now I know that the Drs. out there do not believe in this and I have not completely ruled out Modern Medicine, but my feeling on it is that everything I have been told and done so far has been a "lie".    I really feel let down by everyone involved in my "healthcare".    Some if not most of you may not share in my feelings but I just feel the need to take this more into my own hands.   Because frankly I really feel like the control is being taken away from me.  

    While I know RAW is not a easy transisition from the everyday American diet – trust me I have been trying it for three days now.  I do know that from just that short period of time my allergies that I battle daily as well as my mental state seem to be much better.   I was just wondering if there is anyone out there who has attempted this?  I plan to do it regardless of what my Drs. think or say, if my point of view what can it hurt.  I have been told that I am stage IV, it can't get much worse than that.  Well maybe it could but I really feel the need to put some control back into my life.

     

     

     

     

    Loading spinner
Viewing 1 reply thread
  • Replies
      Carmon in NM
      Participant

      This is a difficult post to respond to and if you look back through the archives you will find similar questions and what people have had to say about alternative and conventional treatments and their own experiences.

      I too am stage 4 and if I listened to statistics, with brain mets and other distant metastasis my life span from last June would be nine months which I just passed! Funny though cause I'm still here and doing great! What many of us choose to do, myself included, is use alternative therapies as supportive to conventional medicine. I work with an acupuncturist, a chiropractor and a Homeopathic Dr who is also a Dr of Nutrition.

      My conventional treatments have been a craniotomy and Gamma Knife for the brain mets and I am about to head in for my 5th round in a clinical drug trial. After the second infusion for the trial, one distant met had been reduced by 50% which is pretty darned good news! In nine months I have had no new mets and the brain mets appear to be nothing but scar tissue now.

      I know that where you are right now is a really tough place and we have all been there. The anger and fear can feel completely unmanageable. Just keep learning as much as you can so that you can make the wisest decisions that you can and don't let the statistics and horrible predictions tear you apart! Carmon in NM

      Loading spinner
        CLPrice31
        Participant

        Dawn,

        As I am completely new to this, I have no advice to offer. I just wanted to tell you I am thinking of you. Your signature at the end of your post hit home to me…I wish you all the luck in the world. 

        Cameron, you always have the best advice! Congrats on passing your 9 months with flying colors!!!!

        Loading spinner
        dawn dion
        Participant

        Thanks for the input and well wishes ladies.   Right back at you both.   Cameron, I am leaning toward what you said and doing both – but going RAW requires detoxing and I have been told that it is not advisable with some treatments esspecially if it involves any kind of chemo.  I guess I will find out on Thursday if that is the case or not.     

        Susan I love the Grey's Anatomy quote – I continue to be a huge fan of that show even if it does hit a little closer to home these days than I would like.  Who would have thought we would all be in the boat with Izzy? 

        Love and blessings to you all. :)

         

        Loading spinner
        CLPrice31
        Participant

        Yeah, really. That was one of the first things, after the initial break down, that my older sister said to me…"Are you such a fan of Grey's Anatomy that you had to go all Izzy on me?" Made me laugh.

         

        Good luck on Thursday. Let us know how you make out.

        Loading spinner
        CLPrice31
        Participant

        Yeah, really. That was one of the first things, after the initial break down, that my older sister said to me…"Are you such a fan of Grey's Anatomy that you had to go all Izzy on me?" Made me laugh.

         

        Good luck on Thursday. Let us know how you make out.

        Loading spinner
        dawn dion
        Participant

        Thanks for the input and well wishes ladies.   Right back at you both.   Cameron, I am leaning toward what you said and doing both – but going RAW requires detoxing and I have been told that it is not advisable with some treatments esspecially if it involves any kind of chemo.  I guess I will find out on Thursday if that is the case or not.     

        Susan I love the Grey's Anatomy quote – I continue to be a huge fan of that show even if it does hit a little closer to home these days than I would like.  Who would have thought we would all be in the boat with Izzy? 

        Love and blessings to you all. :)

         

        Loading spinner
        CLPrice31
        Participant

        Dawn,

        As I am completely new to this, I have no advice to offer. I just wanted to tell you I am thinking of you. Your signature at the end of your post hit home to me…I wish you all the luck in the world. 

        Cameron, you always have the best advice! Congrats on passing your 9 months with flying colors!!!!

        Loading spinner
        Linda J
        Participant
        Hi carmon,

        That is great news that your met has shrunk 50%. I’m into my second week after just 1 infusion of carbo/ taxel and I’m feeling discouraged. I feel pain and I feel like the drugs aren’t doing anything to shrink or stop the tumors. I guess it is still early. My second dose is next Thursday so I’m going to get my fighting spirit back and hope for good results like yours.

        In terms of raw diets, I have a friend who is really big into that diet. He has invited me out to a RAW group meeting. I just feel like it is too much to upheave my eating life style right now. My naturpathic doc said that the idea of an alkaline diet can really be achieved by increasing fruit and veggie intake. I also think that the dietitians I talk to at the hospital are in the know about the best ways to eat for health and none of them have suggested going raw.
        I think for some people that diet style may work and make them feel better, but I don’t think it is a magic cure, and for me right now, I just need to get food into me that is easy to prep and that gives me strength. My 2 cents. It’s an interesting conversation Ive been having at home lately as my friend who is very caring, is also convinced that the raw diet would be good for me.

        Linda J

        Loading spinner
        Linda J
        Participant
        Hi carmon,

        That is great news that your met has shrunk 50%. I’m into my second week after just 1 infusion of carbo/ taxel and I’m feeling discouraged. I feel pain and I feel like the drugs aren’t doing anything to shrink or stop the tumors. I guess it is still early. My second dose is next Thursday so I’m going to get my fighting spirit back and hope for good results like yours.

        In terms of raw diets, I have a friend who is really big into that diet. He has invited me out to a RAW group meeting. I just feel like it is too much to upheave my eating life style right now. My naturpathic doc said that the idea of an alkaline diet can really be achieved by increasing fruit and veggie intake. I also think that the dietitians I talk to at the hospital are in the know about the best ways to eat for health and none of them have suggested going raw.
        I think for some people that diet style may work and make them feel better, but I don’t think it is a magic cure, and for me right now, I just need to get food into me that is easy to prep and that gives me strength. My 2 cents. It’s an interesting conversation Ive been having at home lately as my friend who is very caring, is also convinced that the raw diet would be good for me.

        Linda J

        Loading spinner
      Carmon in NM
      Participant

      This is a difficult post to respond to and if you look back through the archives you will find similar questions and what people have had to say about alternative and conventional treatments and their own experiences.

      I too am stage 4 and if I listened to statistics, with brain mets and other distant metastasis my life span from last June would be nine months which I just passed! Funny though cause I'm still here and doing great! What many of us choose to do, myself included, is use alternative therapies as supportive to conventional medicine. I work with an acupuncturist, a chiropractor and a Homeopathic Dr who is also a Dr of Nutrition.

      My conventional treatments have been a craniotomy and Gamma Knife for the brain mets and I am about to head in for my 5th round in a clinical drug trial. After the second infusion for the trial, one distant met had been reduced by 50% which is pretty darned good news! In nine months I have had no new mets and the brain mets appear to be nothing but scar tissue now.

      I know that where you are right now is a really tough place and we have all been there. The anger and fear can feel completely unmanageable. Just keep learning as much as you can so that you can make the wisest decisions that you can and don't let the statistics and horrible predictions tear you apart! Carmon in NM

      Loading spinner
Viewing 1 reply thread
  • 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.