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- This topic has 36 replies, 9 voices, and was last updated 11 years, 3 months ago by
JakeinNY.
- Post
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- January 26, 2013 at 9:26 am
Hi Everyone,
Well it’s been a week since I saw Dr. Minor in San Fran. What a great visit.
One of my first questions was would he have done wbr on one brain lesion, his answer was no. Well I was disappointed that was the case but it’s over and done so the positive is that if there were cells cruising around up there they most likely would be stopped.
I had been on z for about 9 days when I saw Dr. Minor, I had a horrible red, itchy, rash/burn all over my head, this concerned him so he took me off z fora week and iI’ve been applying a cortaid creme 4xs a day for the last week. My head is getting better.
I’ve finished the meds for thrush and food is tasting better, but I’ve been off z too so not sure if that will come back. I’ve been sleeping a lot!! Like all day for days. Probably from the wbr.
He’s sending me to see a great dermatologist Dr. Kashani. Every mole on my body is surrounded with a red ring. I have basal cell diagnosed under my right eye that noone has addressed.
What I found concerning is noone has tested my LDH levels until now. I don’t know the results yet but at least I’ve been tested now. He’s got what I feel a pretty good treatment plan that makes total sense. I’m going to stay on z for 3-4 months to reduce or eliminate my tumor load, depending on what happens with my brain I will then do ipi or bio chemo.
He did say that the mek was due to be fda approved along with dabrafentib (spelling) the othe braf inhibitor was due out in the 2nd quarter this year, possibly anti pd 1 this year as well. Very good news!!
He said no to the ketogenic diet because it can mess with your liver enzymes which isn’t good while on z and preparing for ipi or bio chemo.
After 9 days of z and off for 3days I got some pretty debilitating knee pain and bottom of feet pain, it went away 2days later but man oh man that wasn’t fun, if it happens in both knees I’m gonna need a little rascal to get around.
I’ve been meaning to post earlier but sleeping became priority. Overall I’m doing good very mild headaches, a bit emotional, and a positive outlook for the future with a treatment plan in action. The top priority is brain stability, this could open more doors for treatment in trials. But for now it’s day to day’s. Brain mri on February 15 then I go back. I got a lot of hope for all of us in this fight that this can be beat and with more and more drugs coming its a matter of time till a cure comes.
All my best to you all,
Denise 🙂
- Replies
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- January 26, 2013 at 11:30 am
Densie, I am delighted that you had such a productive meeting with Dr. Minor. It sounds like he has a lot of experience and some good ideas.
You know, if I was starting Zelboraf now, I think that I would push hard– very hard– for an intermittent dosing schedule. Something like 3 or 4 weeks on and 2 weeks off. A number of folks on this board have had to go this route to minimize Z's side effects. But a recently published paper in Nature using mice showed that intermittent dosing with Zelboraf greatly extends the useful life of the drug. http://www.melanoma.org/community/mpip-melanoma-patients-information-page/altered-dosing-vemurafenib-could-delay-or-prevent-
Since we know that Zelboraf is unlikely to actually cure melanoma, your goal is to keep it under control long enough for another treatment like MEK or anti-PD1 to come on the market. A drug combination and/or an immuno-modulator therapy could work better in the long run than Zelboraf alone.
The fatigue you're feeling is very likely due to the WBR. Don't fight it. Your poor brain needs lots of rest to recover from the treatment. However, the fatigue does get better in a couple of weeks.
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- January 26, 2013 at 11:30 am
Densie, I am delighted that you had such a productive meeting with Dr. Minor. It sounds like he has a lot of experience and some good ideas.
You know, if I was starting Zelboraf now, I think that I would push hard– very hard– for an intermittent dosing schedule. Something like 3 or 4 weeks on and 2 weeks off. A number of folks on this board have had to go this route to minimize Z's side effects. But a recently published paper in Nature using mice showed that intermittent dosing with Zelboraf greatly extends the useful life of the drug. http://www.melanoma.org/community/mpip-melanoma-patients-information-page/altered-dosing-vemurafenib-could-delay-or-prevent-
Since we know that Zelboraf is unlikely to actually cure melanoma, your goal is to keep it under control long enough for another treatment like MEK or anti-PD1 to come on the market. A drug combination and/or an immuno-modulator therapy could work better in the long run than Zelboraf alone.
The fatigue you're feeling is very likely due to the WBR. Don't fight it. Your poor brain needs lots of rest to recover from the treatment. However, the fatigue does get better in a couple of weeks.
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- January 26, 2013 at 11:30 am
Densie, I am delighted that you had such a productive meeting with Dr. Minor. It sounds like he has a lot of experience and some good ideas.
You know, if I was starting Zelboraf now, I think that I would push hard– very hard– for an intermittent dosing schedule. Something like 3 or 4 weeks on and 2 weeks off. A number of folks on this board have had to go this route to minimize Z's side effects. But a recently published paper in Nature using mice showed that intermittent dosing with Zelboraf greatly extends the useful life of the drug. http://www.melanoma.org/community/mpip-melanoma-patients-information-page/altered-dosing-vemurafenib-could-delay-or-prevent-
Since we know that Zelboraf is unlikely to actually cure melanoma, your goal is to keep it under control long enough for another treatment like MEK or anti-PD1 to come on the market. A drug combination and/or an immuno-modulator therapy could work better in the long run than Zelboraf alone.
The fatigue you're feeling is very likely due to the WBR. Don't fight it. Your poor brain needs lots of rest to recover from the treatment. However, the fatigue does get better in a couple of weeks.
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- January 26, 2013 at 2:50 pm
So goo to hear from you Denise! Hang in there! Many of us have to move to a reduced dose of Zel because of side effects, like 3 pills, twice a day. I’m also on a an alternate dosing schedule right now 2 wks on/1 wk off. Who knows what will work, we all do our best, right?Keep fighting!
Amy
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- January 26, 2013 at 2:50 pm
So goo to hear from you Denise! Hang in there! Many of us have to move to a reduced dose of Zel because of side effects, like 3 pills, twice a day. I’m also on a an alternate dosing schedule right now 2 wks on/1 wk off. Who knows what will work, we all do our best, right?Keep fighting!
Amy
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- January 26, 2013 at 2:50 pm
So goo to hear from you Denise! Hang in there! Many of us have to move to a reduced dose of Zel because of side effects, like 3 pills, twice a day. I’m also on a an alternate dosing schedule right now 2 wks on/1 wk off. Who knows what will work, we all do our best, right?Keep fighting!
Amy
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- January 26, 2013 at 4:57 pm
Denise keep that PMA (positive mind attitude) .You have an excellent plan to move forward with .Mostly you feel very confident with the Dr. you saw and his treatment plan.Will keep you in my nightly prayers. Beat the Beast. Al
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- January 26, 2013 at 4:57 pm
Denise keep that PMA (positive mind attitude) .You have an excellent plan to move forward with .Mostly you feel very confident with the Dr. you saw and his treatment plan.Will keep you in my nightly prayers. Beat the Beast. Al
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- January 26, 2013 at 4:57 pm
Denise keep that PMA (positive mind attitude) .You have an excellent plan to move forward with .Mostly you feel very confident with the Dr. you saw and his treatment plan.Will keep you in my nightly prayers. Beat the Beast. Al
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- January 26, 2013 at 9:01 pm
You are a bloody marvel. Every one of your posts ooze with positivity and optimism. You never moan and always sound upbeat and cheerful. I know it won't be like that in real life but that's what I pick up on from you. You keep on truckin' girl (my attempt at being american!) and my very best wishes to you.
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- January 26, 2013 at 9:01 pm
You are a bloody marvel. Every one of your posts ooze with positivity and optimism. You never moan and always sound upbeat and cheerful. I know it won't be like that in real life but that's what I pick up on from you. You keep on truckin' girl (my attempt at being american!) and my very best wishes to you.
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- January 26, 2013 at 9:01 pm
You are a bloody marvel. Every one of your posts ooze with positivity and optimism. You never moan and always sound upbeat and cheerful. I know it won't be like that in real life but that's what I pick up on from you. You keep on truckin' girl (my attempt at being american!) and my very best wishes to you.
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- January 27, 2013 at 4:28 am
Looks like you have a valid plan of attack. Hopefully you will even be in the 50% that Z woks longer than a year on as well. Hang in there aand GOOD LUCK.
Elevated LDH levels can be caused by many things and may not relate to ones melanoma though high levels are a cause of conceern since they point to tissue damage.
What Abnormal Results Mean
LDH level can be elevated in many conditions, not just metastatic melanoma. Higher-than-normal levels may also indicate:
- stroke
- heart attack
- various kinds of anemia
- low blood pressure
- liver disease (for example, hepatitis)
- muscle injury
- muscular dystrophy
- pancreatitis
Falsely elevated results can result if the blood specimen was handled roughly, stored in extreme temperatures, or if the sample was difficult to collect.
In general, the LDH level is measured in order to check for tissue damage, especially to the heart, liver, kidney, skeletal muscle, brain, and lungs, which elevates the normally low LDH level in the blood. For patients with melanoma, it is used to determine if the cancer has metastasized (spread) to organs beyond the skin or lymph nodes, usually to the liver or lungs. Although LDH is not specific for melanoma, it may be useful at diagnosis or to monitor post-surgery (adjuvant) treatment. The staging system for melanoma uses the LDH level to subdivide patients with stage IV disease.
LDH can be normal even in people with stage IV melanoma.
Research
Multiple prior studies have shown that an elevated LDH level can predict survival in patients with advanced melanoma. For this reason, it was included in the 2002 staging system for melanoma. Patients with stage IV melanoma and elevated LDH have the worst prognosis of any stage of the disease.
Beyond categorizing patients with stage IV disease, the LDH test is actually not very specific or sensitive for detecting melanoma metastases in the first place. For example, a recent study followed patients with melanoma for 2.5 years after surgery. The results showed that LDH level was not a good marker for "in transit metastasis" (stage IIIC melanoma that has spread beyond the skin lesion but not to the lymph nodes) or spread to local lymph nodes. Furthermore, it only accurately identified distant metastasis in a minority of patients. A test for another blood protein called S-100B is emerging as a better marker than LDH and so may be incorporated into future staging systems.
Conclusion
If your doctor has ordered a test for LDH, or even if the results come back and the level is high, there is no reason to panic. LDH is not a reliable marker of metastatic melanoma, so a high level is only a "head's up" for the doctor to investigate the situation further with a CT/PET/MRI scan or sentinel lymph node biopsy. If you have any questions or concerns about interpreting your LDH test results, be sure to discuss them with your doctor.
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- January 27, 2013 at 4:28 am
Looks like you have a valid plan of attack. Hopefully you will even be in the 50% that Z woks longer than a year on as well. Hang in there aand GOOD LUCK.
Elevated LDH levels can be caused by many things and may not relate to ones melanoma though high levels are a cause of conceern since they point to tissue damage.
What Abnormal Results Mean
LDH level can be elevated in many conditions, not just metastatic melanoma. Higher-than-normal levels may also indicate:
- stroke
- heart attack
- various kinds of anemia
- low blood pressure
- liver disease (for example, hepatitis)
- muscle injury
- muscular dystrophy
- pancreatitis
Falsely elevated results can result if the blood specimen was handled roughly, stored in extreme temperatures, or if the sample was difficult to collect.
In general, the LDH level is measured in order to check for tissue damage, especially to the heart, liver, kidney, skeletal muscle, brain, and lungs, which elevates the normally low LDH level in the blood. For patients with melanoma, it is used to determine if the cancer has metastasized (spread) to organs beyond the skin or lymph nodes, usually to the liver or lungs. Although LDH is not specific for melanoma, it may be useful at diagnosis or to monitor post-surgery (adjuvant) treatment. The staging system for melanoma uses the LDH level to subdivide patients with stage IV disease.
LDH can be normal even in people with stage IV melanoma.
Research
Multiple prior studies have shown that an elevated LDH level can predict survival in patients with advanced melanoma. For this reason, it was included in the 2002 staging system for melanoma. Patients with stage IV melanoma and elevated LDH have the worst prognosis of any stage of the disease.
Beyond categorizing patients with stage IV disease, the LDH test is actually not very specific or sensitive for detecting melanoma metastases in the first place. For example, a recent study followed patients with melanoma for 2.5 years after surgery. The results showed that LDH level was not a good marker for "in transit metastasis" (stage IIIC melanoma that has spread beyond the skin lesion but not to the lymph nodes) or spread to local lymph nodes. Furthermore, it only accurately identified distant metastasis in a minority of patients. A test for another blood protein called S-100B is emerging as a better marker than LDH and so may be incorporated into future staging systems.
Conclusion
If your doctor has ordered a test for LDH, or even if the results come back and the level is high, there is no reason to panic. LDH is not a reliable marker of metastatic melanoma, so a high level is only a "head's up" for the doctor to investigate the situation further with a CT/PET/MRI scan or sentinel lymph node biopsy. If you have any questions or concerns about interpreting your LDH test results, be sure to discuss them with your doctor.
-
- January 27, 2013 at 4:28 am
Looks like you have a valid plan of attack. Hopefully you will even be in the 50% that Z woks longer than a year on as well. Hang in there aand GOOD LUCK.
Elevated LDH levels can be caused by many things and may not relate to ones melanoma though high levels are a cause of conceern since they point to tissue damage.
What Abnormal Results Mean
LDH level can be elevated in many conditions, not just metastatic melanoma. Higher-than-normal levels may also indicate:
- stroke
- heart attack
- various kinds of anemia
- low blood pressure
- liver disease (for example, hepatitis)
- muscle injury
- muscular dystrophy
- pancreatitis
Falsely elevated results can result if the blood specimen was handled roughly, stored in extreme temperatures, or if the sample was difficult to collect.
In general, the LDH level is measured in order to check for tissue damage, especially to the heart, liver, kidney, skeletal muscle, brain, and lungs, which elevates the normally low LDH level in the blood. For patients with melanoma, it is used to determine if the cancer has metastasized (spread) to organs beyond the skin or lymph nodes, usually to the liver or lungs. Although LDH is not specific for melanoma, it may be useful at diagnosis or to monitor post-surgery (adjuvant) treatment. The staging system for melanoma uses the LDH level to subdivide patients with stage IV disease.
LDH can be normal even in people with stage IV melanoma.
Research
Multiple prior studies have shown that an elevated LDH level can predict survival in patients with advanced melanoma. For this reason, it was included in the 2002 staging system for melanoma. Patients with stage IV melanoma and elevated LDH have the worst prognosis of any stage of the disease.
Beyond categorizing patients with stage IV disease, the LDH test is actually not very specific or sensitive for detecting melanoma metastases in the first place. For example, a recent study followed patients with melanoma for 2.5 years after surgery. The results showed that LDH level was not a good marker for "in transit metastasis" (stage IIIC melanoma that has spread beyond the skin lesion but not to the lymph nodes) or spread to local lymph nodes. Furthermore, it only accurately identified distant metastasis in a minority of patients. A test for another blood protein called S-100B is emerging as a better marker than LDH and so may be incorporated into future staging systems.
Conclusion
If your doctor has ordered a test for LDH, or even if the results come back and the level is high, there is no reason to panic. LDH is not a reliable marker of metastatic melanoma, so a high level is only a "head's up" for the doctor to investigate the situation further with a CT/PET/MRI scan or sentinel lymph node biopsy. If you have any questions or concerns about interpreting your LDH test results, be sure to discuss them with your doctor.
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- January 28, 2013 at 5:45 am
Hi Denise.
I would ask for "proof" that the ketogenic diet "can mess with your liver enzymes" as kids have been on this diet for years in helping with their epilepsy. If he convinces you, then I would say to cut out the sugar and eat the higher quality carbs. Anything that you can do to help makes sense.
Jake
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- January 28, 2013 at 5:45 am
Hi Denise.
I would ask for "proof" that the ketogenic diet "can mess with your liver enzymes" as kids have been on this diet for years in helping with their epilepsy. If he convinces you, then I would say to cut out the sugar and eat the higher quality carbs. Anything that you can do to help makes sense.
Jake
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- January 28, 2013 at 6:01 pm
How about proof that the diet works? Can you provide that too? Proof with melanoma and a large (not <20) sample population?
This study says a ketogenic diet needs more investigation when it comes to liver damage. Why risk the chance of them taking you off a cancer medication because of elevated liver enzymes that may be associated with diet and not disease?
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- January 28, 2013 at 6:01 pm
How about proof that the diet works? Can you provide that too? Proof with melanoma and a large (not <20) sample population?
This study says a ketogenic diet needs more investigation when it comes to liver damage. Why risk the chance of them taking you off a cancer medication because of elevated liver enzymes that may be associated with diet and not disease?
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- January 28, 2013 at 6:01 pm
How about proof that the diet works? Can you provide that too? Proof with melanoma and a large (not <20) sample population?
This study says a ketogenic diet needs more investigation when it comes to liver damage. Why risk the chance of them taking you off a cancer medication because of elevated liver enzymes that may be associated with diet and not disease?
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- January 30, 2013 at 12:31 am
First of all, how about you posting as something other than "anonymous" and doing it consistently?
Afraid that people can't see a trend to your posts? Have some guts.
Is there proof that the ketogenic diet works? Not according to what is accepted as the standard for "proof". But you can tell that to the young girl that was alive and well 10 years after her experience with the ketogenic diet used for her brain cancer in the Nebeling, et al paper. You can also tell that to the people that saw stable tumors and 1 or 2 regressions in the Wurzburg and RECHARGE trials!
The study that you reference above is for RATS, not humans.
They've been doing the ketogenic diet for epilepsy in humans for many years as well as the three studies for the ketogenic diet for cancer in humans. I would think that those studies would have turned up something. If it has proved that it does significantly elevate the liver enzymes, then that could be a problem as you say.
IT WOULD BE A BENEFIT TO ALL OF US IF ANONYMOUS POSTS WERE NOT ALLOWED!!!
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- January 30, 2013 at 12:31 am
First of all, how about you posting as something other than "anonymous" and doing it consistently?
Afraid that people can't see a trend to your posts? Have some guts.
Is there proof that the ketogenic diet works? Not according to what is accepted as the standard for "proof". But you can tell that to the young girl that was alive and well 10 years after her experience with the ketogenic diet used for her brain cancer in the Nebeling, et al paper. You can also tell that to the people that saw stable tumors and 1 or 2 regressions in the Wurzburg and RECHARGE trials!
The study that you reference above is for RATS, not humans.
They've been doing the ketogenic diet for epilepsy in humans for many years as well as the three studies for the ketogenic diet for cancer in humans. I would think that those studies would have turned up something. If it has proved that it does significantly elevate the liver enzymes, then that could be a problem as you say.
IT WOULD BE A BENEFIT TO ALL OF US IF ANONYMOUS POSTS WERE NOT ALLOWED!!!
-
- January 30, 2013 at 2:47 am
I normally post under my name. I chose not to on this ONE particular response. (Anonymous posts are allowed here for very valid reasons even if you don't like them). I don't want to get into your holistic wars. I don't believe in them per se, but do believe that everyone should do what makes sense to them. If you do it and it makes you feel better (mentally or physically), great. If you preach that everyone else should do it, SHOW PROOF.
My final conclusion still stands. If there is a possibility that this diet could affect liver enzymes as hinted at in the article I posted and others, this might cause termination of a cancer treatment when the treatment isn't the cause, but the diet. Cancer treatments are normally harsh on the liver and stressing the liver more because of a diet DURING treatment makes no sense to me. As an adjuvant therapy when there are no other drugs stressing the liver, then go for it if it makes you feel "in control". I'm happy there is anecdotal incidences of remission using this diet, but they are not melanoma patients and this is still not proven to current medical standards. One partial response out of 16 people in a different cancer could be luck and not the diet. IT ISN'T PROVEN and does have questions about its effects on the liver. SHOW PROOF that this doesn't raise liver enzymes, SHOW PROOF that this works in melanoma patients — and then you'll have an audience very willing to listen to you. Until then, most will be skeptical.
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- January 30, 2013 at 2:47 am
I normally post under my name. I chose not to on this ONE particular response. (Anonymous posts are allowed here for very valid reasons even if you don't like them). I don't want to get into your holistic wars. I don't believe in them per se, but do believe that everyone should do what makes sense to them. If you do it and it makes you feel better (mentally or physically), great. If you preach that everyone else should do it, SHOW PROOF.
My final conclusion still stands. If there is a possibility that this diet could affect liver enzymes as hinted at in the article I posted and others, this might cause termination of a cancer treatment when the treatment isn't the cause, but the diet. Cancer treatments are normally harsh on the liver and stressing the liver more because of a diet DURING treatment makes no sense to me. As an adjuvant therapy when there are no other drugs stressing the liver, then go for it if it makes you feel "in control". I'm happy there is anecdotal incidences of remission using this diet, but they are not melanoma patients and this is still not proven to current medical standards. One partial response out of 16 people in a different cancer could be luck and not the diet. IT ISN'T PROVEN and does have questions about its effects on the liver. SHOW PROOF that this doesn't raise liver enzymes, SHOW PROOF that this works in melanoma patients — and then you'll have an audience very willing to listen to you. Until then, most will be skeptical.
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- January 31, 2013 at 5:03 am
First of all, don't be a chicken and post under your name. You can easily view all of my previous posts. As such, I would like to see yours.
I agree with your statement "If there is a possibility that this diet could affect liver enzymes as hinted at in the article I posted and others, this might cause termination of a cancer treatment when the treatment isn't the cause, but the diet." except that you have shown nothing but a paper that reported on an experiment with rats. This diet has been around for many many years for treating epilepsy and if, during those treatments, they have found a significant increase in liver enzymes, then it would be reported, no? Again, if you have proof that this diet raises liver enzymes significantly in humans, to the point where it could interfere with a drug's treatment, please let us know. Remember that many common medicines cause a significant increase in liver enzymes, which is why oncologists ask questions of the patient to determine what caused an increase in the enzymes.
As far as there being proof that this ketogenic diet works in melanoma patients, there is none…..but the positive results on other types of cancers in small trials is encouraging, as is the fact that in one current trial they are recruiting melanoma patients, among others.
Because of the published results and ongoing trials, I can see why oncologists wouldn't want their patients to be doing this diet because if the patient does well on their drug treatment, they may not be certain how much is due to the drug being used and how much is due to the diet unless they have a statistically significant amount of patients doing both.
As for your closing comment: "SHOW PROOF that this doesn't raise liver enzymes, SHOW PROOF that this works in melanoma patients — and then you'll have an audience very willing to listen to you. Until then, most will be skeptical." since when are you representing all of us????? Do I dare say SHOW PROOF that most will be skeptical!!!
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- January 31, 2013 at 5:03 am
First of all, don't be a chicken and post under your name. You can easily view all of my previous posts. As such, I would like to see yours.
I agree with your statement "If there is a possibility that this diet could affect liver enzymes as hinted at in the article I posted and others, this might cause termination of a cancer treatment when the treatment isn't the cause, but the diet." except that you have shown nothing but a paper that reported on an experiment with rats. This diet has been around for many many years for treating epilepsy and if, during those treatments, they have found a significant increase in liver enzymes, then it would be reported, no? Again, if you have proof that this diet raises liver enzymes significantly in humans, to the point where it could interfere with a drug's treatment, please let us know. Remember that many common medicines cause a significant increase in liver enzymes, which is why oncologists ask questions of the patient to determine what caused an increase in the enzymes.
As far as there being proof that this ketogenic diet works in melanoma patients, there is none…..but the positive results on other types of cancers in small trials is encouraging, as is the fact that in one current trial they are recruiting melanoma patients, among others.
Because of the published results and ongoing trials, I can see why oncologists wouldn't want their patients to be doing this diet because if the patient does well on their drug treatment, they may not be certain how much is due to the drug being used and how much is due to the diet unless they have a statistically significant amount of patients doing both.
As for your closing comment: "SHOW PROOF that this doesn't raise liver enzymes, SHOW PROOF that this works in melanoma patients — and then you'll have an audience very willing to listen to you. Until then, most will be skeptical." since when are you representing all of us????? Do I dare say SHOW PROOF that most will be skeptical!!!
-
- January 31, 2013 at 5:03 am
First of all, don't be a chicken and post under your name. You can easily view all of my previous posts. As such, I would like to see yours.
I agree with your statement "If there is a possibility that this diet could affect liver enzymes as hinted at in the article I posted and others, this might cause termination of a cancer treatment when the treatment isn't the cause, but the diet." except that you have shown nothing but a paper that reported on an experiment with rats. This diet has been around for many many years for treating epilepsy and if, during those treatments, they have found a significant increase in liver enzymes, then it would be reported, no? Again, if you have proof that this diet raises liver enzymes significantly in humans, to the point where it could interfere with a drug's treatment, please let us know. Remember that many common medicines cause a significant increase in liver enzymes, which is why oncologists ask questions of the patient to determine what caused an increase in the enzymes.
As far as there being proof that this ketogenic diet works in melanoma patients, there is none…..but the positive results on other types of cancers in small trials is encouraging, as is the fact that in one current trial they are recruiting melanoma patients, among others.
Because of the published results and ongoing trials, I can see why oncologists wouldn't want their patients to be doing this diet because if the patient does well on their drug treatment, they may not be certain how much is due to the drug being used and how much is due to the diet unless they have a statistically significant amount of patients doing both.
As for your closing comment: "SHOW PROOF that this doesn't raise liver enzymes, SHOW PROOF that this works in melanoma patients — and then you'll have an audience very willing to listen to you. Until then, most will be skeptical." since when are you representing all of us????? Do I dare say SHOW PROOF that most will be skeptical!!!
-
- January 30, 2013 at 2:47 am
I normally post under my name. I chose not to on this ONE particular response. (Anonymous posts are allowed here for very valid reasons even if you don't like them). I don't want to get into your holistic wars. I don't believe in them per se, but do believe that everyone should do what makes sense to them. If you do it and it makes you feel better (mentally or physically), great. If you preach that everyone else should do it, SHOW PROOF.
My final conclusion still stands. If there is a possibility that this diet could affect liver enzymes as hinted at in the article I posted and others, this might cause termination of a cancer treatment when the treatment isn't the cause, but the diet. Cancer treatments are normally harsh on the liver and stressing the liver more because of a diet DURING treatment makes no sense to me. As an adjuvant therapy when there are no other drugs stressing the liver, then go for it if it makes you feel "in control". I'm happy there is anecdotal incidences of remission using this diet, but they are not melanoma patients and this is still not proven to current medical standards. One partial response out of 16 people in a different cancer could be luck and not the diet. IT ISN'T PROVEN and does have questions about its effects on the liver. SHOW PROOF that this doesn't raise liver enzymes, SHOW PROOF that this works in melanoma patients — and then you'll have an audience very willing to listen to you. Until then, most will be skeptical.
-
- January 30, 2013 at 12:31 am
First of all, how about you posting as something other than "anonymous" and doing it consistently?
Afraid that people can't see a trend to your posts? Have some guts.
Is there proof that the ketogenic diet works? Not according to what is accepted as the standard for "proof". But you can tell that to the young girl that was alive and well 10 years after her experience with the ketogenic diet used for her brain cancer in the Nebeling, et al paper. You can also tell that to the people that saw stable tumors and 1 or 2 regressions in the Wurzburg and RECHARGE trials!
The study that you reference above is for RATS, not humans.
They've been doing the ketogenic diet for epilepsy in humans for many years as well as the three studies for the ketogenic diet for cancer in humans. I would think that those studies would have turned up something. If it has proved that it does significantly elevate the liver enzymes, then that could be a problem as you say.
IT WOULD BE A BENEFIT TO ALL OF US IF ANONYMOUS POSTS WERE NOT ALLOWED!!!
-
- January 28, 2013 at 5:45 am
Hi Denise.
I would ask for "proof" that the ketogenic diet "can mess with your liver enzymes" as kids have been on this diet for years in helping with their epilepsy. If he convinces you, then I would say to cut out the sugar and eat the higher quality carbs. Anything that you can do to help makes sense.
Jake
-
- January 29, 2013 at 1:01 pm
Denise,
I am glad your appt with the specialist went so well… what a great difference it makes! I had the knee, joint and foot pain when I started Zel.. the joint pain actually did improve some with time, and the foot pain did also after abt the 5th month. I bought gel inserts for my shoes when I had to wear shoes, and wore my sheepskin slippers the rest of the time ( and even the times when they weren't exactly appropriate). It sounds like you are doing great. I have read when others said sleeping was BIG priority after WBR, allowing you to heal, I imagine. " A bit emotional" : this certifies that you are normal and human 😉 . I know that having that plan in place that you feel good about, and moving forward makes such a big difference. So thankful we live in this day and age of options for melanoma treatments!
Thank you for posting, it is good to see your update!!
Tina
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- January 29, 2013 at 1:01 pm
Denise,
I am glad your appt with the specialist went so well… what a great difference it makes! I had the knee, joint and foot pain when I started Zel.. the joint pain actually did improve some with time, and the foot pain did also after abt the 5th month. I bought gel inserts for my shoes when I had to wear shoes, and wore my sheepskin slippers the rest of the time ( and even the times when they weren't exactly appropriate). It sounds like you are doing great. I have read when others said sleeping was BIG priority after WBR, allowing you to heal, I imagine. " A bit emotional" : this certifies that you are normal and human 😉 . I know that having that plan in place that you feel good about, and moving forward makes such a big difference. So thankful we live in this day and age of options for melanoma treatments!
Thank you for posting, it is good to see your update!!
Tina
-
- January 29, 2013 at 1:01 pm
Denise,
I am glad your appt with the specialist went so well… what a great difference it makes! I had the knee, joint and foot pain when I started Zel.. the joint pain actually did improve some with time, and the foot pain did also after abt the 5th month. I bought gel inserts for my shoes when I had to wear shoes, and wore my sheepskin slippers the rest of the time ( and even the times when they weren't exactly appropriate). It sounds like you are doing great. I have read when others said sleeping was BIG priority after WBR, allowing you to heal, I imagine. " A bit emotional" : this certifies that you are normal and human 😉 . I know that having that plan in place that you feel good about, and moving forward makes such a big difference. So thankful we live in this day and age of options for melanoma treatments!
Thank you for posting, it is good to see your update!!
Tina
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- January 30, 2013 at 5:11 am
Denise, I'm glad you got in to see Dr. Minor. They're definitely a melanoma specialist practice over there. I got to see him talk once at an Aim at Melanoma seminar in SF.
Is your rash/burn is calming down now?
How about photosensitivity? Someone I know on Zel gets sunburned if she lets part of her face or other skin get hit by sunlight for even 5 minutes. Because of Zel she's had to become an expert on covering up.
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- January 30, 2013 at 5:11 am
Denise, I'm glad you got in to see Dr. Minor. They're definitely a melanoma specialist practice over there. I got to see him talk once at an Aim at Melanoma seminar in SF.
Is your rash/burn is calming down now?
How about photosensitivity? Someone I know on Zel gets sunburned if she lets part of her face or other skin get hit by sunlight for even 5 minutes. Because of Zel she's had to become an expert on covering up.
-
- January 30, 2013 at 5:11 am
Denise, I'm glad you got in to see Dr. Minor. They're definitely a melanoma specialist practice over there. I got to see him talk once at an Aim at Melanoma seminar in SF.
Is your rash/burn is calming down now?
How about photosensitivity? Someone I know on Zel gets sunburned if she lets part of her face or other skin get hit by sunlight for even 5 minutes. Because of Zel she's had to become an expert on covering up.
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Tagged: cutaneous melanoma
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