› Forums › General Melanoma Community › Benfotiamine
- This topic has 12 replies, 3 voices, and was last updated 12 years, 11 months ago by
JerryfromFauq.
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- January 6, 2013 at 6:04 pm
Hello,
Does anyone know what amount of the water soluable Thiamin is recommended by Dr. Oz?
Any good ideas on treatment of Zelbraf rash?
Hello,
Does anyone know what amount of the water soluable Thiamin is recommended by Dr. Oz?
Any good ideas on treatment of Zelbraf rash?
Still feeling a little overwhelmed by the nurse saying that Matt will be on the the PX866/Zelbraf until it stops working. I guess I was hoping it would put him into remission. I am reading posts now to find if anyone has had better luck with going off meds altogether after a certain therapy? Any other homeopathic remedies? Matt's melanoma is stage 3 and the doctors say it is "in his blood", not sure what that means. He had a lump on his face that already dissappeared with the clinical trial meds and there were 2 spots on his lungs that were too small to biopsy which was the reason for doing the clinical trial and not the radiation they had initially prescribed.
Thank you,
Renee
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- January 6, 2013 at 6:24 pm
Hi Renee,
There are at least two people on here, AL and Dick who have had lasting, durable response to Zel. I think that nurse was out of line, since nobody really knows how long any given individual will respond, and new drugs are in the pipeline that may extend response time or that we may be able to switch on and off with Zel or a variation thereof.Regarding Benfotiamine, I JUST posted about it in my thread about Zel, and I asked Nancy, who first brought it to my attention, what dosage she takes!
All the best,
Karen -
- January 6, 2013 at 6:24 pm
Hi Renee,
There are at least two people on here, AL and Dick who have had lasting, durable response to Zel. I think that nurse was out of line, since nobody really knows how long any given individual will respond, and new drugs are in the pipeline that may extend response time or that we may be able to switch on and off with Zel or a variation thereof.Regarding Benfotiamine, I JUST posted about it in my thread about Zel, and I asked Nancy, who first brought it to my attention, what dosage she takes!
All the best,
Karen -
- January 6, 2013 at 6:24 pm
Hi Renee,
There are at least two people on here, AL and Dick who have had lasting, durable response to Zel. I think that nurse was out of line, since nobody really knows how long any given individual will respond, and new drugs are in the pipeline that may extend response time or that we may be able to switch on and off with Zel or a variation thereof.Regarding Benfotiamine, I JUST posted about it in my thread about Zel, and I asked Nancy, who first brought it to my attention, what dosage she takes!
All the best,
Karen -
- January 8, 2013 at 6:03 am
NO ONE can say for sure that any melanoma treatment will either work, not that one will stop working on any one individual Yes, to date the studies have shown that in about 50% of the BRAF melanoma that do respond to melanoma, 50% of that 50% stop responding within one year. Many of the 50% that the anti-BRAF stops working on would not have made it as long as they did without it. The ones that are still responding after one year may have an indefinite length response (maybe forever). My targeted Chemo stops working on some people after a matter of months. Others have been on it for over ten years now. Currents studies show that if the Gleevec is stopped at the one, three,or five year points, the cancers it attacks may again accelerate.
The other subject you bring up is how the melanoma cells travel. The most common early mode of transportation is via the lymph system. If ones tumors are deep enough to approach the blood vessels or melanoma cells travel far enough though the lymph system to get to where the lymph system joins the blood system (up near the heart) then the melanoma cells can be in the blood. Currently a couple of tests are being developed to learn if the cells are in ones blood. No such test has been approved yet and very few people have ever had the proposed test conducted.
If tumors have spread to the lungs (as mine has) and is/was in the jugular, then cells are most likely in the blood system.
On the homeopathic adjuvant side, I do recommend Curcumin (Turmeric Extract 95%) as studied by MDA, Broccoli (being studied by several centers, and the interesting small studies being released lately about the possibility that plain old aspirin (325 grain), by reducing inflammation and resulting blood pathway growth resulting from tumors, seem to actually reduce the mortality rate from several cancers (melanoma included). Just make sure you don't have stomach/digestive problems from aspirin or at least use the coated ones to get the aspirin past the stomach into the intestines.
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- January 8, 2013 at 6:03 am
NO ONE can say for sure that any melanoma treatment will either work, not that one will stop working on any one individual Yes, to date the studies have shown that in about 50% of the BRAF melanoma that do respond to melanoma, 50% of that 50% stop responding within one year. Many of the 50% that the anti-BRAF stops working on would not have made it as long as they did without it. The ones that are still responding after one year may have an indefinite length response (maybe forever). My targeted Chemo stops working on some people after a matter of months. Others have been on it for over ten years now. Currents studies show that if the Gleevec is stopped at the one, three,or five year points, the cancers it attacks may again accelerate.
The other subject you bring up is how the melanoma cells travel. The most common early mode of transportation is via the lymph system. If ones tumors are deep enough to approach the blood vessels or melanoma cells travel far enough though the lymph system to get to where the lymph system joins the blood system (up near the heart) then the melanoma cells can be in the blood. Currently a couple of tests are being developed to learn if the cells are in ones blood. No such test has been approved yet and very few people have ever had the proposed test conducted.
If tumors have spread to the lungs (as mine has) and is/was in the jugular, then cells are most likely in the blood system.
On the homeopathic adjuvant side, I do recommend Curcumin (Turmeric Extract 95%) as studied by MDA, Broccoli (being studied by several centers, and the interesting small studies being released lately about the possibility that plain old aspirin (325 grain), by reducing inflammation and resulting blood pathway growth resulting from tumors, seem to actually reduce the mortality rate from several cancers (melanoma included). Just make sure you don't have stomach/digestive problems from aspirin or at least use the coated ones to get the aspirin past the stomach into the intestines.
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- January 8, 2013 at 6:03 am
NO ONE can say for sure that any melanoma treatment will either work, not that one will stop working on any one individual Yes, to date the studies have shown that in about 50% of the BRAF melanoma that do respond to melanoma, 50% of that 50% stop responding within one year. Many of the 50% that the anti-BRAF stops working on would not have made it as long as they did without it. The ones that are still responding after one year may have an indefinite length response (maybe forever). My targeted Chemo stops working on some people after a matter of months. Others have been on it for over ten years now. Currents studies show that if the Gleevec is stopped at the one, three,or five year points, the cancers it attacks may again accelerate.
The other subject you bring up is how the melanoma cells travel. The most common early mode of transportation is via the lymph system. If ones tumors are deep enough to approach the blood vessels or melanoma cells travel far enough though the lymph system to get to where the lymph system joins the blood system (up near the heart) then the melanoma cells can be in the blood. Currently a couple of tests are being developed to learn if the cells are in ones blood. No such test has been approved yet and very few people have ever had the proposed test conducted.
If tumors have spread to the lungs (as mine has) and is/was in the jugular, then cells are most likely in the blood system.
On the homeopathic adjuvant side, I do recommend Curcumin (Turmeric Extract 95%) as studied by MDA, Broccoli (being studied by several centers, and the interesting small studies being released lately about the possibility that plain old aspirin (325 grain), by reducing inflammation and resulting blood pathway growth resulting from tumors, seem to actually reduce the mortality rate from several cancers (melanoma included). Just make sure you don't have stomach/digestive problems from aspirin or at least use the coated ones to get the aspirin past the stomach into the intestines.
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