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Swanee

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      Swanee
      Participant

        Hi Nett:)

        NO, this is not your last year and there are other treatment options for you when doctors no longer can provide you with their best medicine!

        I believe my first melanoma was about 2005 and Iwas  misdiagnosed as a blood blister.

        I becamed acquainted with melanoma in 2010 after being diagnosed stage 4 with unknown primary.

        I had the fortunate experience to have a very dear friend from England, who immediately came to help and stayed with me for 6 months.  She did very careful research and suggested the Budwig diet and introduced me to the regimen.  The Budwig diet is well known in the naturopathic community and has had great success in many cancers.  It's also the one common trait I have in common with long time melanoma survivors. It's not harmful to your body and costs very little and does not involve a pharmaceutical company.  It's also very good for everyone in your family as a preventative measure against cancer and wellness.

        While I do not live cancer free, I have continued to enjoy a great life.  I believe I have created an enviornment that cancer finds difficult to thrive in and so continues my longevity, whatever I can do to increase my years with quality of life is good for me!  My doctors continue to be amazed at my slow progression and deny that flax oil can play a part of that?  But I disagree!

        I think this is a safe and effective alternative when everything else has failed.  There are mild side effects getting your system use to the regimen but it is simple and effective and is life saving in my case and many others who I've been in contact with on this website!

        You can go onliine to find the info, it is widely available and again is a very natural effective way to fight back against cancer.  

        Good luck, wishing you all my best in your journey!

        Swanee

         

        Swanee
        Participant

          Hey John!

          Good news, thanks for sharing:)!!

          Recently after being on this site, I thought to myself, nobody here anymore that use to post, either expired or healed and on another journey!  You were one of the stories I followed closely…when I check in always hoping a post from you…..Life IS good! 

          I've been in the battle 7 years now, but have continued on a path of watch and wait with many surgeries! Currently, another spot lighting up in June scan, waiting, watching until January at which time I know I will choose more surgery unless something else indicates otherwise! 

          I am enrolled in SCCA's TIL program, everything good to go, just need to sign on the dotted line!  I feel there is something different about me than others here, my progression has been much slower!  So still weighing it out as I continue to lead a good life,  full of living my dreams and reaching goals!  I read a post from you way back when I first joined MPIP that left an indelible mark on my journey and I think of you often when considering TIL!  I valued your expertise being a veterinarian and having a good scope on the medical field from a practical standpoint!  Although I started out in a panic and my doctors advising me I needed to act quickly, I have survived and slowed down my treatment approaches. For whatever reason, watching and waiting has served me well and I continue to do what I can from a naturopathic place, lots of flaxseed and oil. That's the one thing I found in common with long term survivors on this website!!

          Thanks for posting, it meant alot to me tonight (in my journey) to see this post from you!  Life is good, so happy to hear you are doing well and NED! 

          Happy THANKSGIVING…….Blessings to you and your family!

          Swanee

          Swanee
          Participant

            Hi Maggie!  So good to see a post from you and to hear how well you are doing!  I'm especially interested in your journey as we seem to have similar stories of unknown primary, auto immune tendencies and both of us choosing naturopathic options (for as long as we can) and the watch and wait approach!  

            I was diagnosed in 2010 and have only been NED after surgery, which has never lasted more than six months.  I continue to have lymph nodes and sub q's and opt for surgery each time.  I am enrolled in the SCCA TIL and have met all the current criteria, with good success growing my cells for TIL, to be used if/when the option is chosen!  I'd rather do something less invasive if possible, I like the idea of sticking my big toe in first to test the waters, rather than TIL, where it feels more like,  all or none!  So to hear about this treatment you are tolerating well, is very hopeful for me and I will definitely discuss with my Dr. in September, after scans.  I currently have two new ymph nodes that are lighting up so will rescan in September and see what they are up to?   

            Like you, I too have lived well following a more naturopathic approach and the watch and wait program but also knowing at the next scan it may be time for a new approach!  I have no regrets with this choice as so much progress has occurred since I was first diagnosed.  I continue to gather and read as much information as I can to remain informed and count my blessings that I continue to beat the odds! Wishing you continued success with your current treatment and clear scans on the 11th!  Thanks again for posting Maggie, I and many others have been concerned for you after the loss of your brother, the news of your own progression and then not hearing from you!  

            Swanee

            Swanee
            Participant

              One idea that comes to mind is Guaifenesin (Mucinex) it thins and loosens mucus.  My elderly mother has asthma and sometimes gets a rattle in her chest, despite no cold.  The doctor prescribes guaifenesin for a week or two at a time to help break up this rattle.  You might check with your doctor to see if this could also help your husband in a similar way, worth a try!  The side effects are minimal taken with plenty of water, has been effective for my mom!  Hope this helps!

              Swanee 

              Swanee
              Participant

                I get up every day, check mpip and pray for an update, hopefully one I want to hear! Continued prayers and positive thoughts to Josh and Jaime for all the time they need to heal and recover.  

                God bless all who come here on a daily basis for comfort, wisdom, support and strength and peace and calmness in the midst of the storm that creates so much heartache and anxiety.  Sending positive thoughts to all and may we all be the ricipient today  of good news!

                Swanee 

                Swanee
                Participant

                  Hi Tex!  

                  We all hate greeting a new comer to this group but at the same time, we all love reaching out with support and assurance that you have found a great place to be.

                  I love your post and I can see from your words that you have already embraced your melanoma diagnosis with courage and positivity that will take you far in this journey and that is the key to living with this enemy.

                  My life is different now, I've been given a notice.  I feel, see, hear, love and experience life differently and it has been in so many ways a gift., I'm living completely different now.  While there is a lot of struggle, pain, highs and lows, my life is good, better than it's ever been.  Every day is a gift and I don't waste a moment, even if I'm feeling low, I let it be, feel the pain and move on.  In the end, today is the only day any of us have….Live Big! 

                  Yesterday is history, today is a gift, tomorrow is a mystery!

                  Sendng positive thoughts and encouraging support to you in your melanoma journey!

                  Swanee

                  Swanee
                  Participant

                    It is bittersweet but thank you Jen for this update on Paul.  

                    It is so very hard to believe Paul's journey here has come to an end.  Paul made it all seem so easy with his humor and matter of fact way of telling us the details of his journey and keeping us all updated. Paul will be missed beyond words that can describe our loss here on MPIP, my heart aches for his family and the loss, they no doubt will feel  for a very long time.

                    After spending the past 7 years here myself, the heartbreak here is palpable and I know why so many choose not to linger long if there is no reason to stay.  I know I've adjusted my own involvment as it can sometimes become detrimental to my own PMA (Al Dakota's abbreviation for Positive Mental Attitude) and journey with melanoma. Sometimes the grief and loss is so heartbreaking, you just can't take any more. 

                    Everyone here is so very brave and fearless and God Bless all those that continue to help, support, fight alongside and heal others.  This is a tough journey and no one knows what their or their loved ones outcome will be when they start visiting, sharing and becoming involved with others from the MPIP family.

                    I think Paul left us all a great gift in his passing and we should all honor Paul by paying it forward in our own melanoma journey, passing it on to others we love. Paul's  determination, optimisim, relentless fight against melanoma combined with his positive, humorous, witty and strong PMA, not only inspired us but will now heal us too!  Also, the fact that Paul never gave up and when one door shut, he was waiting for the next door to open.  Right to the end, Paul was looking at the next option on his list and waisted no time in setting the wheels in motion.  I'm comforted by knowing how busy Paul was right to the end, no idle moments thinking of his own mortality but always finding a way around obstacles  in those little slivers of hope that he found around each new corner he encountered.  What an amazing man, he will be remembered for a very long time as we and newcomers continue reading his encouraging posts.  I think of so many other beloved MPIP family that have also passed on and remember them with the same heartfelt loss.

                    Blessings of love, support and healing to all who come here as we cope with  another difficult day for our MPIP family.

                    Rest in Peace Paul and thank you for all your insights and uplifting spirit you gave so freely to all here.

                    Swanee

                    Swanee
                    Participant

                      Josh…..I've followed your story from the beginning and have kept a watch on your journey.  My heart has soared with your good news and sank with the not so good news.  You are on my heart and when I'm checking in with MPIP, you are who I'm seeking and a few others, hoping for good news.  I can tell from your many posts what a loving caring person you are, a big teddy bear of sorts, a family guy,  but a tough guy, Marine strength….the best!  And by the way, thank you for your service and contribution to our country, keeping us and our families safe and out of harms way.  Your strength and grit has inspired me and so many others,  way more than you know, but also your honest, tell it like it is, has also touched so many of us here on MPIP.  I wish you continued strength and courage with your battle and at home with your loved ones.  Like so many of us in the battle, it takes a lot of strength to put on a happy face and hold back tears to reassure our loved ones we will beat this and be here tomorrow.  There are so many here on this site that never post but are praying for you, thinking positive thoughts and hoping you find a success in your next treatment to beat this, we all want this for you.

                      Thinking of you tonight, praying for comfort and peace for you and your family and for your health to be restored.

                      Wishing you a beautiful holiday season with your sweet family.

                      Blessings,

                      Swanee

                       

                      Swanee
                      Participant
                        Hi Mike! I’ve been hanging on this website for 9 years and was really active the first couple years, when it was a very peaceful website. But then a few new members joined and it became very volitile!
                        I was diagnosed Stage 4 right out the gate and not given long to live! I had a dear friend that came to visit and she suggested the Budwig diet, which I have followed since 2011l. I’ve tried to share my success but it was quickly shot down by the big hitters on this site. While I respect their opinions immensely, I also know there are many paths to our recovery. What I do and say is just a suggestion!
                        I knew early on I was in a serious situation but because I also learned early on,. that I had an over active immune system and I didn’t respond well to immunotherapy. I’m all on board and all set to go with TIL at SCCA. I believe in modern medicine but I also believe in simple answers too! So far the Budwig diet has helped me immensely. I know it may not be a complete cure but for me, I do believe it has slowed the progression of my cancer. I love your humor Mike, you are someone that I would love to know (and I kinda do know:) and you could be from my family! I pray for your complete recovery and continued longevity, you are a sweet, loving and kind person and I wish you all the best! The thing is about this website is….so many people are on it and following, but we may or may not make comments or have other reasons why we no longer respond to posts! So make no mistake, there are so many people here who are rooting for you Mike, you are a shining star on this website and we are all following your journey with the greatest and biggest hopes for you! Sending BIG HUGE HUGS AND LOVE to you! Swanee

                        Swanee
                        Participant

                          Manfred,

                          I received your email and sent you a reply, not sure if it made it back through the mpip channel.Please feel free to email me and we can set something up! [email protected] 

                          Swanee
                          Participant

                            Hi Paul!  When I was first diagnosed, it was determined I had a unknown primary.  However, I had what I believe to be a nodular melanoma on my back that my GP called a blood blister.  It appeared on my back, grew quickly and then fell off, I recollect this happened in a 3-4 month time span and about 5-7 years prior to being diagnosed.  When grape size lumps (subcutaneous) started appearing, again my GP misdiagnosed as a dermatofibroma? as well as my dermotologist, diagnosing the same.  Not until I insisted I wanted it removed (growing and becoming painful) it was determined then I had stage IV melanoma cancer in 2010, at which time 2 more tumors were discovered in my breast.

                            Swanee
                            Participant

                              Janner's advice is good!  My family doctor told me I had a blood blister and it turned out it was melanoma that I ignored upon his advice:( five years later showing up as sub cutaneous melanomas throughout my trunk! You must be with a good dermatologist that shows interest in melanoma.  The first dermatologist I had still misdiaganosed it, which delayed it even further!  If you are not satisfied with their response and/or don't feel your questions are being answered adequately, move on or ask that it be biopsied! It can be a tricky world out there with melanoma because so many GP's are not trained and they are usually the first line that we are directed to and if you don't have a clue (like me:( you trust their direction or delay your response, and in my area it takes another 3 months to get in for an appt!

                              Swanee
                              Participant

                                Charlie S…….Every New Year I look forward to a post from you, giving us all a little shake up and stateing the obvious with no sugar coating.  You made made my day, the New Year is off to a great start!

                                Cheers Charlie!

                                Swanee 

                                Swanee
                                Participant

                                  Charlie S…….Every New Year I look forward to a post from you, giving us all a little shake up and stateing the obvious with no sugar coating.  You made made my day, the New Year is off to a great start!

                                  Cheers Charlie!

                                  Swanee 

                                  Swanee
                                  Participant

                                    Charlie S…….Every New Year I look forward to a post from you, giving us all a little shake up and stateing the obvious with no sugar coating.  You made made my day, the New Year is off to a great start!

                                    Cheers Charlie!

                                    Swanee 

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