› Forums › Cutaneous Melanoma Community › Still Chuggin Along
- This topic has 15 replies, 4 voices, and was last updated 9 years, 10 months ago by
DZnDef.
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- October 18, 2015 at 7:48 pm
Hi Everybody, I haven't posted here in a long time. I was stage 4 mel with multiple tumors about 4-5 years back, mostly my tumors were dealt with by surgury or gamma ray. Originally I was diagnose as stage 4 way back in 2006. I never received any real medicine such as interferon or yervoy although I tried to get into the original trials for ipilimumab back in 2010 but was rejected since I had the wrong genetic markers. Anyway I just wanted to check in and let everybody know I'm still fine and have been NED for about 3 years now, my bloodwork is fantastic according to my Onc, blood sugars are down around 90 now in the morning from about 115 before, LD reading is low 30's now… before was over 70, lymphocyte are upto 25% wheras before was about 11-12%, vitamin D level is over 60 wheras before was about 18 (lol), PET scans have been clear since 2012 and my Onc recently told me we would cease these and only check bloodwork from now on. Frankly we are both amazed at my progress since most patients seem to have poor prognosis with Mel.
Before what? If you recall I was the vitamin D guy, I remember James Sennel from way back and followed his advice which seems to have worked great for me. I began using a vitamin D lamp (made by Sperti) about 3 months before my final episode with this stupid inflammatory condition called melanoma. I believe it was primarily responsible for getting rid of this problem, I used to take the vitamin pill form but the lamp really seemed to get my levels much higher. I think coupled with using the lamp, I stopped bathing the skin oils off using soap (only trunk arms and legs) from the areas I used this lamp on. Many people told me this would actually cause by skin cancer to grow like crazy since this is a UVB source lamp but it did not, in fact my dermatologist has not seen any new weird looking moles in at least 2 years now.
Why did I do this? One day I googled how vitamin D pills are manufactured, you should also do this. You will find that the substance called vitamin D is not really a vitamin at all but is mostly made in or on the skin by a particular wave length of light (UVB) causing a photochemical reaction which coverts the cholesterol in our sebum into a hormone precursor which is then reabsorbed back into the body and converted in the liver into what we call vitamin D along with a multitude of other endocrine hormones. Commercial vitamin D pill actually come from sheep sebum (lanolin) which is doused with UVB rays, sorry I know that is pretty disgusting but is enlightening as to the way this substance is supposed to be made by our bodies. I figured I was having some sort of problem absorbing this pill form which prompted me to try to make this substance naturally.
In addition to using this lamp to generate a lot of vitamin D, I cut out nearly all dairy products from my diet, I was trying to reduce or remove casein protein mainly since it is highly inflammatory and actually a very sticky substance which I think clogs up the lymphatic system. My theory is this improves immune responsiveness since the lymph system and cancer cells are more easily identified and eliminated. In addition to no dairy, I quit using fluoride toothpaste and started a mineral supplement. That was pretty much all I did aside from live a normal life, quit wearing sunscreen and get enough good nutrition and exercise.
I believe all of us have the ability to kick melanoma's butt and just wanted to encourage everybody with my story which is true, it is possible to beat this condition. Please consider the above advice, none of what I did will interefere with any of the meds or other stuff doctors want to do, this protocol is very inexpensive (aside from the lamp which is about $400) and makes you feel you are taking positive steps in your own recovery rather than feeling helpless or dependent on the doctors. Oh and about that whole sunscreen debate… you should be aware that wearing sunscreen prevents 98% of your natural vitamin D production.
Good Luck!!
Todd C
Los Angeles CA
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- October 20, 2015 at 3:46 am
Wow! What impressive results! Thanks for sharing. I believe there may be many ways to keep cancer at bay and you may very well have figured one out. At least it seems to be working for you so far. Any of the current drug makers would be envious of your results. I'm trying a nutritional approach myself for now along with pancreatic enzymes under a doctor's care/guidance. I'm 8 months into it and feeling great so far. I've avoided CT scans since January so I can't say for sure what my current status is but I went kayaking a couple weeks ago and did great and I continue to feel fantastic. I saw my pulmonologist today and he can't believe how well I am doing. I agreed to get a CT scan in December (since I met my deductible for the year) to humor him so I suppose I'll have a better idea then. But I feel so good I don't want to jynx it HA!
Keep up the impressive results! And please to check back in from time to time to keep us posted.
Maggie
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- October 20, 2015 at 3:46 am
Wow! What impressive results! Thanks for sharing. I believe there may be many ways to keep cancer at bay and you may very well have figured one out. At least it seems to be working for you so far. Any of the current drug makers would be envious of your results. I'm trying a nutritional approach myself for now along with pancreatic enzymes under a doctor's care/guidance. I'm 8 months into it and feeling great so far. I've avoided CT scans since January so I can't say for sure what my current status is but I went kayaking a couple weeks ago and did great and I continue to feel fantastic. I saw my pulmonologist today and he can't believe how well I am doing. I agreed to get a CT scan in December (since I met my deductible for the year) to humor him so I suppose I'll have a better idea then. But I feel so good I don't want to jynx it HA!
Keep up the impressive results! And please to check back in from time to time to keep us posted.
Maggie
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- October 23, 2015 at 3:35 am
Hi Maggie, I'm actually glad no more pet scan anymore for me since I really feel great now and don't want any more radiation either lol. My onc said just looking at the markers I referenced in the bloodwork should be ok. I was really bad with Mel having recurrent distant met rumors, luckily one at a time which could be cut out surgically and of course super lucky not to have vital organs involved. I noticed a lot of improvements when I got my inflammation down and vitamin d level up like arthritis is much better now and of course no more tumors in a long time now.
I really wish there were more studies on what I did rather than just anecdotal stories. Also when I was battling this and it looked bleak for me, I wished there were more posts here about successes and how people thought they came about. I truly believe this terrible disease has simple causes that can be remedied but messages we get from the healthcare community such as sunscreen or low cholesterol diet really point us in the wrong direction. I hope you continue to stay healthy!
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- October 23, 2015 at 3:35 am
Hi Maggie, I'm actually glad no more pet scan anymore for me since I really feel great now and don't want any more radiation either lol. My onc said just looking at the markers I referenced in the bloodwork should be ok. I was really bad with Mel having recurrent distant met rumors, luckily one at a time which could be cut out surgically and of course super lucky not to have vital organs involved. I noticed a lot of improvements when I got my inflammation down and vitamin d level up like arthritis is much better now and of course no more tumors in a long time now.
I really wish there were more studies on what I did rather than just anecdotal stories. Also when I was battling this and it looked bleak for me, I wished there were more posts here about successes and how people thought they came about. I truly believe this terrible disease has simple causes that can be remedied but messages we get from the healthcare community such as sunscreen or low cholesterol diet really point us in the wrong direction. I hope you continue to stay healthy!
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- October 23, 2015 at 3:35 am
Hi Maggie, I'm actually glad no more pet scan anymore for me since I really feel great now and don't want any more radiation either lol. My onc said just looking at the markers I referenced in the bloodwork should be ok. I was really bad with Mel having recurrent distant met rumors, luckily one at a time which could be cut out surgically and of course super lucky not to have vital organs involved. I noticed a lot of improvements when I got my inflammation down and vitamin d level up like arthritis is much better now and of course no more tumors in a long time now.
I really wish there were more studies on what I did rather than just anecdotal stories. Also when I was battling this and it looked bleak for me, I wished there were more posts here about successes and how people thought they came about. I truly believe this terrible disease has simple causes that can be remedied but messages we get from the healthcare community such as sunscreen or low cholesterol diet really point us in the wrong direction. I hope you continue to stay healthy!
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- October 23, 2015 at 6:58 pm
Hi Todd, Unfortunately, studies cost money and the only folks that have enough money to conduct studies are the pharmaceutical companies. They are intrested only in studying their own products (understandably, as a business can only stay in business by selling its own products).
I attended a melanoma forum this week at UC Irvine and was surprised to learn that government funding is also used to study pharmaceutical drugs. I asked at the meeting if anyone had read the Rigvir study published this month in the online journal "Melanoma Research" and none of the four doctors had read it. They are all really busy. This concerns me that they are limiting their research only to what the major pharmaceutical companies are offering.
To the extent that government funding is involved, I wish more of it would go towards studying natural approaches such as yours and mine AND educating doctors on the results. It's the educating that is really lacking. The pharmacuetical companies spend more on marketing than they do on research. The natural studies do not have a marketing branch (that I know of) to inform doctors of their results. Only the doctors that actively read the journals are aware of them.
When I win the mega-millions lottery, I'll fund a study. Until then, those of us looking for healthy approaches to cancer have to rely on individual cancer stories like yours and (hopefully) mine for encouragement.
Keep up the good work. I will post my CT results when I get them in December. Keeping my fingers crossed!
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- October 23, 2015 at 6:58 pm
Hi Todd, Unfortunately, studies cost money and the only folks that have enough money to conduct studies are the pharmaceutical companies. They are intrested only in studying their own products (understandably, as a business can only stay in business by selling its own products).
I attended a melanoma forum this week at UC Irvine and was surprised to learn that government funding is also used to study pharmaceutical drugs. I asked at the meeting if anyone had read the Rigvir study published this month in the online journal "Melanoma Research" and none of the four doctors had read it. They are all really busy. This concerns me that they are limiting their research only to what the major pharmaceutical companies are offering.
To the extent that government funding is involved, I wish more of it would go towards studying natural approaches such as yours and mine AND educating doctors on the results. It's the educating that is really lacking. The pharmacuetical companies spend more on marketing than they do on research. The natural studies do not have a marketing branch (that I know of) to inform doctors of their results. Only the doctors that actively read the journals are aware of them.
When I win the mega-millions lottery, I'll fund a study. Until then, those of us looking for healthy approaches to cancer have to rely on individual cancer stories like yours and (hopefully) mine for encouragement.
Keep up the good work. I will post my CT results when I get them in December. Keeping my fingers crossed!
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- October 23, 2015 at 6:58 pm
Hi Todd, Unfortunately, studies cost money and the only folks that have enough money to conduct studies are the pharmaceutical companies. They are intrested only in studying their own products (understandably, as a business can only stay in business by selling its own products).
I attended a melanoma forum this week at UC Irvine and was surprised to learn that government funding is also used to study pharmaceutical drugs. I asked at the meeting if anyone had read the Rigvir study published this month in the online journal "Melanoma Research" and none of the four doctors had read it. They are all really busy. This concerns me that they are limiting their research only to what the major pharmaceutical companies are offering.
To the extent that government funding is involved, I wish more of it would go towards studying natural approaches such as yours and mine AND educating doctors on the results. It's the educating that is really lacking. The pharmacuetical companies spend more on marketing than they do on research. The natural studies do not have a marketing branch (that I know of) to inform doctors of their results. Only the doctors that actively read the journals are aware of them.
When I win the mega-millions lottery, I'll fund a study. Until then, those of us looking for healthy approaches to cancer have to rely on individual cancer stories like yours and (hopefully) mine for encouragement.
Keep up the good work. I will post my CT results when I get them in December. Keeping my fingers crossed!
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- October 20, 2015 at 3:46 am
Wow! What impressive results! Thanks for sharing. I believe there may be many ways to keep cancer at bay and you may very well have figured one out. At least it seems to be working for you so far. Any of the current drug makers would be envious of your results. I'm trying a nutritional approach myself for now along with pancreatic enzymes under a doctor's care/guidance. I'm 8 months into it and feeling great so far. I've avoided CT scans since January so I can't say for sure what my current status is but I went kayaking a couple weeks ago and did great and I continue to feel fantastic. I saw my pulmonologist today and he can't believe how well I am doing. I agreed to get a CT scan in December (since I met my deductible for the year) to humor him so I suppose I'll have a better idea then. But I feel so good I don't want to jynx it HA!
Keep up the impressive results! And please to check back in from time to time to keep us posted.
Maggie
Tagged: cutaneous melanoma
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