› Forums › General Melanoma Community › Matastic Melanoma
- This topic has 18 replies, 5 voices, and was last updated 7 years, 11 months ago by
hknoll.
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- November 5, 2015 at 2:49 am
Hello All,
Well, I have had my 2nd and 3rd opinions and probably going for my 4th. I have Stage 4 Matastic Melanoma in my Lymph Nodes. I had the surgery to remove the cancer in two Lymph Nodes and all the rest of my Lymph Nodes removed in my lower groin area. So as of right now probably no cancer.
2 of the Doctors want to do the Wait and rescan in 2 months being that if they start Keytruda or Opdivo there is nothing to to go after and why put my body through the therapy. There is no way of knowing if it is woiorking if there is no tumor. The other doctor wants me to start the therapy right away because he says it would work on microscopic cancer.
I am very confused on which path to take and I am doing a lot of praying, waiting for some kind of guidance to make the right decision. I am leaning towards the Wait and rescan option . Is there anyone else who is dealing with a similar situation?
I know that once you start the therapy it alters your immune system and there are many risks involved, Crohn's, Colitis, etc. and I could be taken it indefinitely, I have also heard that it aonly helps about 40% of the people.
I know this is a great suport group, and this decision is mine to make it is just so hard to make. I am exercisng, joining support groups, using positive thinking and have completely changed my diet and taking supplements. I am lookinginto meditation and anything else I can do to keep this ugly desease away.
Any insight and help wouldbe appreciated.
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- November 5, 2015 at 5:34 am
I don't know that there is a right answer to this. Both options have risks and advantages. It really depends on what is acceptable to you. As you now know, even the medical experts don't agree. Since you currently don't have any detectable melanoma that does limit your choices in terms of treatment. I know there are people here that will have great advice. I can only say to do your research, make your choice, and then don't look back. I pray that the melanoma is gone forever and this is the last choice regarding it that you will ever have to make.
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- November 5, 2015 at 5:34 am
I don't know that there is a right answer to this. Both options have risks and advantages. It really depends on what is acceptable to you. As you now know, even the medical experts don't agree. Since you currently don't have any detectable melanoma that does limit your choices in terms of treatment. I know there are people here that will have great advice. I can only say to do your research, make your choice, and then don't look back. I pray that the melanoma is gone forever and this is the last choice regarding it that you will ever have to make.
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- May 22, 2016 at 2:22 am
I agree, do your reseach and you will find a better answer, I have stage 4 matastic melonoma, had no ops and no chemo, just pills , i must say that that pills have made me sick over the 9 months, there are better treatments around. ( side affectsof the poison i take) .
The one thing i found was that oncology is very competitve for your service, is all about the $$$$$, try searching google on "The Truth about Cancer "" if you dont like it, thats ok , but remember be positive and feel invincible that will go long way.
An operation to remove parts of you body dosent mean that you have removed cancer.
I have a melonoma removed from my wrist 5 yrs ago , today i have tumors in lynph nodes and spine L2.
To me doctors donot have all the answers about medicine, so please do you research.
regards
Hans
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- May 22, 2016 at 2:22 am
I agree, do your reseach and you will find a better answer, I have stage 4 matastic melonoma, had no ops and no chemo, just pills , i must say that that pills have made me sick over the 9 months, there are better treatments around. ( side affectsof the poison i take) .
The one thing i found was that oncology is very competitve for your service, is all about the $$$$$, try searching google on "The Truth about Cancer "" if you dont like it, thats ok , but remember be positive and feel invincible that will go long way.
An operation to remove parts of you body dosent mean that you have removed cancer.
I have a melonoma removed from my wrist 5 yrs ago , today i have tumors in lynph nodes and spine L2.
To me doctors donot have all the answers about medicine, so please do you research.
regards
Hans
-
- May 22, 2016 at 2:22 am
I agree, do your reseach and you will find a better answer, I have stage 4 matastic melonoma, had no ops and no chemo, just pills , i must say that that pills have made me sick over the 9 months, there are better treatments around. ( side affectsof the poison i take) .
The one thing i found was that oncology is very competitve for your service, is all about the $$$$$, try searching google on "The Truth about Cancer "" if you dont like it, thats ok , but remember be positive and feel invincible that will go long way.
An operation to remove parts of you body dosent mean that you have removed cancer.
I have a melonoma removed from my wrist 5 yrs ago , today i have tumors in lynph nodes and spine L2.
To me doctors donot have all the answers about medicine, so please do you research.
regards
Hans
-
- November 5, 2015 at 5:34 am
I don't know that there is a right answer to this. Both options have risks and advantages. It really depends on what is acceptable to you. As you now know, even the medical experts don't agree. Since you currently don't have any detectable melanoma that does limit your choices in terms of treatment. I know there are people here that will have great advice. I can only say to do your research, make your choice, and then don't look back. I pray that the melanoma is gone forever and this is the last choice regarding it that you will ever have to make.
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- November 5, 2015 at 6:51 am
It is a very difficult and extremely personal decision you have to make here. My own cancer wasn't discovered until it was already Stage IV (lungs). As you have noted, the drugs do not help everyone but if they do work for you, they can be a homerun. My own fear was that they would both not work for me AND give me nasty side effects (nothing to really base that on other than my own history of bad luck). Meanwhile, I decided that they will either work for me or they won't. If they work for me, they'll work for me later just as well as now. And if they don't work for me, then there's really no point in taking them earlier. So I decided to put it off. Like yourself, I changed my diet and am taking supplements. I have also added detoxification routines all under the guidance of my doctor. Unlike yourself, I do have measurable disease in my lungs. I just wanted to put off those drugs as long as possible. I completely understand people not being comfortable with a choice like that. I like your meditation idea. I tried it but wasn't very good at it. I need to try it again.
Good luck with your decision and I hope your disease stays gone.
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- November 5, 2015 at 12:27 pm
Maggie,
Thanks for your response, Curious, what type of detoxification routines are you doing? Would you be willing to share?
I am also looking into several support groups where they offer counseling, cooking classes since it is sometimes so hard to find something to eat. Some of these places also offer free massages. I do have a great support group at home I hope you do as well.
So I guess positive thinking, prayers and having someone to talk to helps, Thanks for being there for me. and good luck to you and your journey.
Perhaps talk to you again soon.
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- November 6, 2015 at 9:08 pm
Hi Daisyduke,
I am doing several detoxification routines. I started with a Liver Flush which I now repeat once every three months. I also do a 3-day carrot juice fast (once every three months). And I take a bulking agent for 5 days once every three months. So every month, I am doing one of the three detox routines above, I rotate them. Also, I do coffee enemas twice a day every day. If you want details on any of these, you can send me a private message by clicking on my username and selecting the "contact" tab.
I never used to cook at all (just restaurants, fast-food and frozen dinners). Now I do all my own cooking and don't even use the microwave. That was a huge adjustment for me. Not just learning how to cook, but how to shop for groceries!
Nothing I am doing has been proven effective for cancer in any conventional sense. But it's my life and it makes me feel good and I'm still alive and active and feeling healthier than ever so I'm sticking with it for now.
I would encourage you to remain active on this site. There are always people available to answer any question and we're all dealing with the same disease even if we have chosen different approaches. We all learn from each other's experiences. It's a very supportive group.
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- November 6, 2015 at 9:08 pm
Hi Daisyduke,
I am doing several detoxification routines. I started with a Liver Flush which I now repeat once every three months. I also do a 3-day carrot juice fast (once every three months). And I take a bulking agent for 5 days once every three months. So every month, I am doing one of the three detox routines above, I rotate them. Also, I do coffee enemas twice a day every day. If you want details on any of these, you can send me a private message by clicking on my username and selecting the "contact" tab.
I never used to cook at all (just restaurants, fast-food and frozen dinners). Now I do all my own cooking and don't even use the microwave. That was a huge adjustment for me. Not just learning how to cook, but how to shop for groceries!
Nothing I am doing has been proven effective for cancer in any conventional sense. But it's my life and it makes me feel good and I'm still alive and active and feeling healthier than ever so I'm sticking with it for now.
I would encourage you to remain active on this site. There are always people available to answer any question and we're all dealing with the same disease even if we have chosen different approaches. We all learn from each other's experiences. It's a very supportive group.
-
- November 6, 2015 at 9:08 pm
Hi Daisyduke,
I am doing several detoxification routines. I started with a Liver Flush which I now repeat once every three months. I also do a 3-day carrot juice fast (once every three months). And I take a bulking agent for 5 days once every three months. So every month, I am doing one of the three detox routines above, I rotate them. Also, I do coffee enemas twice a day every day. If you want details on any of these, you can send me a private message by clicking on my username and selecting the "contact" tab.
I never used to cook at all (just restaurants, fast-food and frozen dinners). Now I do all my own cooking and don't even use the microwave. That was a huge adjustment for me. Not just learning how to cook, but how to shop for groceries!
Nothing I am doing has been proven effective for cancer in any conventional sense. But it's my life and it makes me feel good and I'm still alive and active and feeling healthier than ever so I'm sticking with it for now.
I would encourage you to remain active on this site. There are always people available to answer any question and we're all dealing with the same disease even if we have chosen different approaches. We all learn from each other's experiences. It's a very supportive group.
-
- November 7, 2015 at 5:54 am
Hi Daisy… I found the two biggest factors for me to stop growing melanoma tumors was the use of a vitamin d lamp and removing most dairy from my diet, particularly anything high in sticky and inflammation causing casein protein. I found if I quit bathing my arms, legs and torso with soap so the sebum build just a bit and then using this uvb lamp on those areas, it really caused my vitamin d level to soar from 18 to 60. I would recommend you make sure your bloodwork includes measure of vitamin d and if you are low, consider this method. You can actually expose lanolin oil to the uvb lamp if you are uncertain about the uvb effect on your skin and apply the oil frequently which will also cause blood level of vitamin to increase. I believe the skin source for vitamin d is much better than the pill form which I think many people have hard time absorbing fully. Massages are awesome way to increase reabsorbtion of vitamin d hormone precursor from skin. I know this sound silly and simple but it worked for me, won't interfere with treatments, and makes you feel you are doing something natural and positive so helps visualize being healthy again. Vitamin d is not really a vitamin since it is primarily manufactured in the skin of most mammals (people too lol). We as a population really don't get enough sun which is sort of paradoxical to melanoma but the uvb lamp is a reasonable alternative.
Sorry, its hard to communicate fully about natural methods in these message boards without sounding like a nutcase… my 2 cts on mel – Good Luck!
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- November 7, 2015 at 5:54 am
Hi Daisy… I found the two biggest factors for me to stop growing melanoma tumors was the use of a vitamin d lamp and removing most dairy from my diet, particularly anything high in sticky and inflammation causing casein protein. I found if I quit bathing my arms, legs and torso with soap so the sebum build just a bit and then using this uvb lamp on those areas, it really caused my vitamin d level to soar from 18 to 60. I would recommend you make sure your bloodwork includes measure of vitamin d and if you are low, consider this method. You can actually expose lanolin oil to the uvb lamp if you are uncertain about the uvb effect on your skin and apply the oil frequently which will also cause blood level of vitamin to increase. I believe the skin source for vitamin d is much better than the pill form which I think many people have hard time absorbing fully. Massages are awesome way to increase reabsorbtion of vitamin d hormone precursor from skin. I know this sound silly and simple but it worked for me, won't interfere with treatments, and makes you feel you are doing something natural and positive so helps visualize being healthy again. Vitamin d is not really a vitamin since it is primarily manufactured in the skin of most mammals (people too lol). We as a population really don't get enough sun which is sort of paradoxical to melanoma but the uvb lamp is a reasonable alternative.
Sorry, its hard to communicate fully about natural methods in these message boards without sounding like a nutcase… my 2 cts on mel – Good Luck!
-
- November 7, 2015 at 5:54 am
Hi Daisy… I found the two biggest factors for me to stop growing melanoma tumors was the use of a vitamin d lamp and removing most dairy from my diet, particularly anything high in sticky and inflammation causing casein protein. I found if I quit bathing my arms, legs and torso with soap so the sebum build just a bit and then using this uvb lamp on those areas, it really caused my vitamin d level to soar from 18 to 60. I would recommend you make sure your bloodwork includes measure of vitamin d and if you are low, consider this method. You can actually expose lanolin oil to the uvb lamp if you are uncertain about the uvb effect on your skin and apply the oil frequently which will also cause blood level of vitamin to increase. I believe the skin source for vitamin d is much better than the pill form which I think many people have hard time absorbing fully. Massages are awesome way to increase reabsorbtion of vitamin d hormone precursor from skin. I know this sound silly and simple but it worked for me, won't interfere with treatments, and makes you feel you are doing something natural and positive so helps visualize being healthy again. Vitamin d is not really a vitamin since it is primarily manufactured in the skin of most mammals (people too lol). We as a population really don't get enough sun which is sort of paradoxical to melanoma but the uvb lamp is a reasonable alternative.
Sorry, its hard to communicate fully about natural methods in these message boards without sounding like a nutcase… my 2 cts on mel – Good Luck!
-
- November 5, 2015 at 12:27 pm
Maggie,
Thanks for your response, Curious, what type of detoxification routines are you doing? Would you be willing to share?
I am also looking into several support groups where they offer counseling, cooking classes since it is sometimes so hard to find something to eat. Some of these places also offer free massages. I do have a great support group at home I hope you do as well.
So I guess positive thinking, prayers and having someone to talk to helps, Thanks for being there for me. and good luck to you and your journey.
Perhaps talk to you again soon.
-
- November 5, 2015 at 12:27 pm
Maggie,
Thanks for your response, Curious, what type of detoxification routines are you doing? Would you be willing to share?
I am also looking into several support groups where they offer counseling, cooking classes since it is sometimes so hard to find something to eat. Some of these places also offer free massages. I do have a great support group at home I hope you do as well.
So I guess positive thinking, prayers and having someone to talk to helps, Thanks for being there for me. and good luck to you and your journey.
Perhaps talk to you again soon.
-
- November 5, 2015 at 6:51 am
It is a very difficult and extremely personal decision you have to make here. My own cancer wasn't discovered until it was already Stage IV (lungs). As you have noted, the drugs do not help everyone but if they do work for you, they can be a homerun. My own fear was that they would both not work for me AND give me nasty side effects (nothing to really base that on other than my own history of bad luck). Meanwhile, I decided that they will either work for me or they won't. If they work for me, they'll work for me later just as well as now. And if they don't work for me, then there's really no point in taking them earlier. So I decided to put it off. Like yourself, I changed my diet and am taking supplements. I have also added detoxification routines all under the guidance of my doctor. Unlike yourself, I do have measurable disease in my lungs. I just wanted to put off those drugs as long as possible. I completely understand people not being comfortable with a choice like that. I like your meditation idea. I tried it but wasn't very good at it. I need to try it again.
Good luck with your decision and I hope your disease stays gone.
-
- November 5, 2015 at 6:51 am
It is a very difficult and extremely personal decision you have to make here. My own cancer wasn't discovered until it was already Stage IV (lungs). As you have noted, the drugs do not help everyone but if they do work for you, they can be a homerun. My own fear was that they would both not work for me AND give me nasty side effects (nothing to really base that on other than my own history of bad luck). Meanwhile, I decided that they will either work for me or they won't. If they work for me, they'll work for me later just as well as now. And if they don't work for me, then there's really no point in taking them earlier. So I decided to put it off. Like yourself, I changed my diet and am taking supplements. I have also added detoxification routines all under the guidance of my doctor. Unlike yourself, I do have measurable disease in my lungs. I just wanted to put off those drugs as long as possible. I completely understand people not being comfortable with a choice like that. I like your meditation idea. I tried it but wasn't very good at it. I need to try it again.
Good luck with your decision and I hope your disease stays gone.
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