Stage IV update

Forums General Melanoma Community Stage IV update

  • Post
    DZnDef
    Participant
      I had a fresh set of CT scans done yesterday and reviewed them with the oncologist in the afternoon.
       
      Dr. O'Day walks in and says "Good news.  You've had barely measurable growth on two nodes no growth on the others and no new metastases".  He then turned to his colleague and said "her immune system is keeping her cancer in check".   He doesn't want to see me for another 4 months.
       
      I see my Naturopath next week.  We'll see what tweaks she suggests to my approach.  My next review, I want Dr. O'Day to say none of them grew (dare I hope for shrinkage?)
       
      I'm very happy with these results.  As far as I'm concerned, the existing cancer is welcome to stay right where it is and serve as a physical reminder for me to keep my new healthy habits.  As long as it stays put.
       
      If it does continue to grow (he said it could easily double in size before it would cause me any problems) I will at that time begin whatever is the best available medical treatment (Ipi, Anti-PD1, Anti-PD1L, BRAF combo, etc).
       
      I would like to point out that I discovered my disease accidentally via chest x-ray, not because I was having symptoms.  And although it is Stage IV unknown primary (it is in my lungs) it is an "early" stage IV.  Which begs the question:  Is the slow rate of growth due to the lifestyle changes I have made or is it merely the normal rate of the disease when it is this early?  There is no way to know for certain.  I choose to believe my lifestyle changes are playing an important role but even if I am wrong, it has allowed me to enjoy a quality of life far superior to what I was living before and the drugs will still be there for me should I need them.
       
      I am counting my blessings.  I hope this post finds you all feeling well.
      Maggie
    Viewing 11 reply threads
    • Replies
        BrianP
        Participant

          Great new Maggie.  Congrats.

          BrianP
          Participant

            Great new Maggie.  Congrats.

            BrianP
            Participant

              Great new Maggie.  Congrats.

              arthurjedi007
              Participant

                Congrats Maggie. I'm hedging my bets it is due to the lifestyle changes.

                Artie

                arthurjedi007
                Participant

                  Congrats Maggie. I'm hedging my bets it is due to the lifestyle changes.

                  Artie

                  arthurjedi007
                  Participant

                    Congrats Maggie. I'm hedging my bets it is due to the lifestyle changes.

                    Artie

                    sweetaugust
                    Participant

                      Maggie!

                      I love your post.  So glad you are doing so well.  It is so great to hear…and great to hear you are keeping up with all the healthy ways.  I couldn't have stated it better myself.

                      Have a great evening,

                      Laurie in Boston

                      sweetaugust
                      Participant

                        Maggie!

                        I love your post.  So glad you are doing so well.  It is so great to hear…and great to hear you are keeping up with all the healthy ways.  I couldn't have stated it better myself.

                        Have a great evening,

                        Laurie in Boston

                        sweetaugust
                        Participant

                          Maggie!

                          I love your post.  So glad you are doing so well.  It is so great to hear…and great to hear you are keeping up with all the healthy ways.  I couldn't have stated it better myself.

                          Have a great evening,

                          Laurie in Boston

                          newmanmark
                          Participant

                            I'd love to know more about your lifestyle changes if you're willing to share.  I am also stage 4.

                              DZnDef
                              Participant

                                Thanks Brian, Artie and Laurie!  Your comments are very well received!

                                newmanmark – I see that you have also embraced some alternative approaches which have apparently protected you from new metastases (very impressive) even though it has not stopped the growth of the one tumor (a separate biological process I believe).  I will gladly share with you if you will share with me!

                                1)  Biggest change was elimination of stress.  I had at least 5 years of chronic stress preceeding my diagnosis.  Many of those triggers removed themselves and the last, my job, I quit.  My husband is now supporting us and I am accepting that guilt-free (I would have felt very guilty previously).  To live stress-free is a HUGE attitude adjustment for me.  I believe this to have a large benefit to my immune system.

                                2) Diet changes – I eliminated all sugar, grains, legumes, processed foods and dairy except for raw butter (I have been very good about these changes).  For the remaining food that I do eat I have switched to organic, non-GMO, grass-fed, pastured, wild-caught, etc. (I have not been as good at this as I eat too often in restaurants).  As a side-effect, I lost 40 pounds since February which was most welcome!

                                3) Health evaluation with a Naturopath who discovered that I have low thyroid function (now corrected with Nature-Throid prescription) and I was anemic (now corrected with iron supplementation).  In addition, to optimize health and survival benefits for cancer, she has me taking the following supplements:

                                – Coenzyme Co Q10

                                – Curcumin Extract

                                – Green Tea Extract

                                – Melatonin

                                – Vitamin D3 (based on blood tests I was very deficient, now I am slightly high so have scaled back)

                                – Coriolus Super Strength (I started with Beta 1,3 Glucan on my own and she had me switch to this)

                                Additional things I have not done yet that my Naturopath has recommended:

                                1) Exercise (is there ever a good reason not to do this?  Not even controversial.  I am a couch potato.)

                                2) Avemar supplementation (actually Oncomar – which is a pill form of Avemar).  She wanted to wait to see if this was necessary as it is fairly expensive (around $200 for one month supply).  I expect I will be starting this soon.  Maybe if I had exercised I wouldn't need to.  Oh well.

                                3) To eat a higher ratio of vegetables (I tend to eat more animal products than vegetables) and achieve an alkaline PH (my PH is currently acidic).

                                I am hopeful that if I implement these additional changes, I may see some improvements at next scan.  Your turn, newmanmark – what have you been doing that has helped keep those new mets from forming?

                                Cheers – Maggie

                                Squash
                                Participant

                                  I like the regime your naturopath has put forward for you.

                                  You should definitely buy the Avemar. It is probably the best supplement you can get for melanoma even thou it is pricey it is worth it.

                                  I think you could add some cold pressed oils like flaxseed to that regime along with organic greens and a daily fresh veggie juice.

                                  For exercise yoga would be a good option along with walking. You can do those all by yourself with no cost and at any time that suits you.

                                   

                                   

                                  DZnDef
                                  Participant

                                    Thank you, Squash.  I see my Naturopath this Thursday so I will run your suggestions past her.  I have considered yoga but I have serious balance problems due to Meniere's disease.   I might try it anyways as I've always liked the concepts behind it.  Thanks again for your suggestions.

                                    Squash
                                    Participant

                                      You definitely need something like spirulina or organic phyto greens so that you can get yourself akaline.

                                      Does you naturopath do the live blood analysis?

                                      If not you should try and get it done that way you can track your progress and tweak your diet accroding tohow your blood looks.

                                       

                                       

                                      Squash
                                      Participant

                                        You definitely need something like spirulina or organic phyto greens so that you can get yourself akaline.

                                        Does you naturopath do the live blood analysis?

                                        If not you should try and get it done that way you can track your progress and tweak your diet accroding tohow your blood looks.

                                         

                                         

                                        DZnDef
                                        Participant

                                          Saw my Naturopath and asked about your suggestions, Squash.  She's not a fan of live blood analysis and does encourage me to eat more greens (I have a juicer now and will aim for 1 quart of fresh green juice per day).  She has given me the info to buy Avemar but has stressed that she doesn't think I need it as she is happy with my current status.  She switched me to a more bioavailable form of curcumin (Theracurcumin) and increased my melatonin to 20mg from 15.  She is also not a big fan of flaxseed oil.  But suggested fish oil if I wanted to boost my omega 3s.

                                          There is so much variety among health practitioners.  I will continue with her advice for now….  But if I have any growth at my next scans, I will look for a second or third opinion.  Thanks for your suggestions.  I will be interested in continuing to learn about your path and how your body responds.

                                          Maggie

                                          DZnDef
                                          Participant

                                            Saw my Naturopath and asked about your suggestions, Squash.  She's not a fan of live blood analysis and does encourage me to eat more greens (I have a juicer now and will aim for 1 quart of fresh green juice per day).  She has given me the info to buy Avemar but has stressed that she doesn't think I need it as she is happy with my current status.  She switched me to a more bioavailable form of curcumin (Theracurcumin) and increased my melatonin to 20mg from 15.  She is also not a big fan of flaxseed oil.  But suggested fish oil if I wanted to boost my omega 3s.

                                            There is so much variety among health practitioners.  I will continue with her advice for now….  But if I have any growth at my next scans, I will look for a second or third opinion.  Thanks for your suggestions.  I will be interested in continuing to learn about your path and how your body responds.

                                            Maggie

                                            DZnDef
                                            Participant

                                              Saw my Naturopath and asked about your suggestions, Squash.  She's not a fan of live blood analysis and does encourage me to eat more greens (I have a juicer now and will aim for 1 quart of fresh green juice per day).  She has given me the info to buy Avemar but has stressed that she doesn't think I need it as she is happy with my current status.  She switched me to a more bioavailable form of curcumin (Theracurcumin) and increased my melatonin to 20mg from 15.  She is also not a big fan of flaxseed oil.  But suggested fish oil if I wanted to boost my omega 3s.

                                              There is so much variety among health practitioners.  I will continue with her advice for now….  But if I have any growth at my next scans, I will look for a second or third opinion.  Thanks for your suggestions.  I will be interested in continuing to learn about your path and how your body responds.

                                              Maggie

                                              Squash
                                              Participant

                                                You definitely need something like spirulina or organic phyto greens so that you can get yourself akaline.

                                                Does you naturopath do the live blood analysis?

                                                If not you should try and get it done that way you can track your progress and tweak your diet accroding tohow your blood looks.

                                                 

                                                 

                                                DZnDef
                                                Participant

                                                  Thank you, Squash.  I see my Naturopath this Thursday so I will run your suggestions past her.  I have considered yoga but I have serious balance problems due to Meniere's disease.   I might try it anyways as I've always liked the concepts behind it.  Thanks again for your suggestions.

                                                  DZnDef
                                                  Participant

                                                    Thank you, Squash.  I see my Naturopath this Thursday so I will run your suggestions past her.  I have considered yoga but I have serious balance problems due to Meniere's disease.   I might try it anyways as I've always liked the concepts behind it.  Thanks again for your suggestions.

                                                    Squash
                                                    Participant

                                                      I like the regime your naturopath has put forward for you.

                                                      You should definitely buy the Avemar. It is probably the best supplement you can get for melanoma even thou it is pricey it is worth it.

                                                      I think you could add some cold pressed oils like flaxseed to that regime along with organic greens and a daily fresh veggie juice.

                                                      For exercise yoga would be a good option along with walking. You can do those all by yourself with no cost and at any time that suits you.

                                                       

                                                       

                                                      Squash
                                                      Participant

                                                        I like the regime your naturopath has put forward for you.

                                                        You should definitely buy the Avemar. It is probably the best supplement you can get for melanoma even thou it is pricey it is worth it.

                                                        I think you could add some cold pressed oils like flaxseed to that regime along with organic greens and a daily fresh veggie juice.

                                                        For exercise yoga would be a good option along with walking. You can do those all by yourself with no cost and at any time that suits you.

                                                         

                                                         

                                                        DZnDef
                                                        Participant

                                                          Thanks Brian, Artie and Laurie!  Your comments are very well received!

                                                          newmanmark – I see that you have also embraced some alternative approaches which have apparently protected you from new metastases (very impressive) even though it has not stopped the growth of the one tumor (a separate biological process I believe).  I will gladly share with you if you will share with me!

                                                          1)  Biggest change was elimination of stress.  I had at least 5 years of chronic stress preceeding my diagnosis.  Many of those triggers removed themselves and the last, my job, I quit.  My husband is now supporting us and I am accepting that guilt-free (I would have felt very guilty previously).  To live stress-free is a HUGE attitude adjustment for me.  I believe this to have a large benefit to my immune system.

                                                          2) Diet changes – I eliminated all sugar, grains, legumes, processed foods and dairy except for raw butter (I have been very good about these changes).  For the remaining food that I do eat I have switched to organic, non-GMO, grass-fed, pastured, wild-caught, etc. (I have not been as good at this as I eat too often in restaurants).  As a side-effect, I lost 40 pounds since February which was most welcome!

                                                          3) Health evaluation with a Naturopath who discovered that I have low thyroid function (now corrected with Nature-Throid prescription) and I was anemic (now corrected with iron supplementation).  In addition, to optimize health and survival benefits for cancer, she has me taking the following supplements:

                                                          – Coenzyme Co Q10

                                                          – Curcumin Extract

                                                          – Green Tea Extract

                                                          – Melatonin

                                                          – Vitamin D3 (based on blood tests I was very deficient, now I am slightly high so have scaled back)

                                                          – Coriolus Super Strength (I started with Beta 1,3 Glucan on my own and she had me switch to this)

                                                          Additional things I have not done yet that my Naturopath has recommended:

                                                          1) Exercise (is there ever a good reason not to do this?  Not even controversial.  I am a couch potato.)

                                                          2) Avemar supplementation (actually Oncomar – which is a pill form of Avemar).  She wanted to wait to see if this was necessary as it is fairly expensive (around $200 for one month supply).  I expect I will be starting this soon.  Maybe if I had exercised I wouldn't need to.  Oh well.

                                                          3) To eat a higher ratio of vegetables (I tend to eat more animal products than vegetables) and achieve an alkaline PH (my PH is currently acidic).

                                                          I am hopeful that if I implement these additional changes, I may see some improvements at next scan.  Your turn, newmanmark – what have you been doing that has helped keep those new mets from forming?

                                                          Cheers – Maggie

                                                          DZnDef
                                                          Participant

                                                            Thanks Brian, Artie and Laurie!  Your comments are very well received!

                                                            newmanmark – I see that you have also embraced some alternative approaches which have apparently protected you from new metastases (very impressive) even though it has not stopped the growth of the one tumor (a separate biological process I believe).  I will gladly share with you if you will share with me!

                                                            1)  Biggest change was elimination of stress.  I had at least 5 years of chronic stress preceeding my diagnosis.  Many of those triggers removed themselves and the last, my job, I quit.  My husband is now supporting us and I am accepting that guilt-free (I would have felt very guilty previously).  To live stress-free is a HUGE attitude adjustment for me.  I believe this to have a large benefit to my immune system.

                                                            2) Diet changes – I eliminated all sugar, grains, legumes, processed foods and dairy except for raw butter (I have been very good about these changes).  For the remaining food that I do eat I have switched to organic, non-GMO, grass-fed, pastured, wild-caught, etc. (I have not been as good at this as I eat too often in restaurants).  As a side-effect, I lost 40 pounds since February which was most welcome!

                                                            3) Health evaluation with a Naturopath who discovered that I have low thyroid function (now corrected with Nature-Throid prescription) and I was anemic (now corrected with iron supplementation).  In addition, to optimize health and survival benefits for cancer, she has me taking the following supplements:

                                                            – Coenzyme Co Q10

                                                            – Curcumin Extract

                                                            – Green Tea Extract

                                                            – Melatonin

                                                            – Vitamin D3 (based on blood tests I was very deficient, now I am slightly high so have scaled back)

                                                            – Coriolus Super Strength (I started with Beta 1,3 Glucan on my own and she had me switch to this)

                                                            Additional things I have not done yet that my Naturopath has recommended:

                                                            1) Exercise (is there ever a good reason not to do this?  Not even controversial.  I am a couch potato.)

                                                            2) Avemar supplementation (actually Oncomar – which is a pill form of Avemar).  She wanted to wait to see if this was necessary as it is fairly expensive (around $200 for one month supply).  I expect I will be starting this soon.  Maybe if I had exercised I wouldn't need to.  Oh well.

                                                            3) To eat a higher ratio of vegetables (I tend to eat more animal products than vegetables) and achieve an alkaline PH (my PH is currently acidic).

                                                            I am hopeful that if I implement these additional changes, I may see some improvements at next scan.  Your turn, newmanmark – what have you been doing that has helped keep those new mets from forming?

                                                            Cheers – Maggie

                                                          newmanmark
                                                          Participant

                                                            I'd love to know more about your lifestyle changes if you're willing to share.  I am also stage 4.

                                                            newmanmark
                                                            Participant

                                                              I'd love to know more about your lifestyle changes if you're willing to share.  I am also stage 4.

                                                          Viewing 11 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.

                                                          Popular Topics