› Forums › General Melanoma Community › IL2 on Monday
- This topic has 27 replies, 6 voices, and was last updated 13 years, 3 months ago by
Kelly7.
- Post
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- February 2, 2012 at 12:58 am
Hello,
My brother,37, was just diagnosed with metastasized Melanoma in his right lung. He has 3 legions, 2 inside and 1 outside the lung. He starts his IL2 treatment on Monday, February 6th. I have been doing non-stop research on this since I found out on Sunday. I have come across some very interesting treatments to do at the same time as the Il2, before and after.
PectaSol-C to slow down the cancer cells from growing.
Double Helix Water to repair the cells
Upping vitamin D levels to 10,000 iu/ day.
Hello,
My brother,37, was just diagnosed with metastasized Melanoma in his right lung. He has 3 legions, 2 inside and 1 outside the lung. He starts his IL2 treatment on Monday, February 6th. I have been doing non-stop research on this since I found out on Sunday. I have come across some very interesting treatments to do at the same time as the Il2, before and after.
PectaSol-C to slow down the cancer cells from growing.
Double Helix Water to repair the cells
Upping vitamin D levels to 10,000 iu/ day.
Completely cutting out ALL dairy, sugar, and breads.
Has anyone on this site had any positive results from using alternative medicine as well as IL2?
Any advise for him going in on Monday? How can my family support him the best? Is there something we should be bringing to the hospital or something we should avoid???
Thank you so much!
- Replies
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- February 2, 2012 at 1:20 am
I don't know about the other treatments, but Jane from Maine has put a list of essentials for IL-2 treatment. www.operationsunshield.org It is an incredibly useful list and should help prepare your brother. good luck!!
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- February 2, 2012 at 1:20 am
I don't know about the other treatments, but Jane from Maine has put a list of essentials for IL-2 treatment. www.operationsunshield.org It is an incredibly useful list and should help prepare your brother. good luck!!
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- February 2, 2012 at 1:20 am
I don't know about the other treatments, but Jane from Maine has put a list of essentials for IL-2 treatment. www.operationsunshield.org It is an incredibly useful list and should help prepare your brother. good luck!!
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- February 2, 2012 at 4:19 am
I hope I can do this correctly. In using the search bar for Jane from Maine, I discovered that her information on IL2, that link, has been changed to:
http://melanomaresources.info/jane.html#homenotes
I think this is where you will find Jane's helpful information that IL2 patient's have used. Good luck and from what I have read through the years, heed Jane's advice, hang tough and know that you can do this!!
I do not have any experience with this treatment. I've been participating in this board for seven years now. That's how I know of Jane.
CarolA – Stage III
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- February 2, 2012 at 4:19 am
I hope I can do this correctly. In using the search bar for Jane from Maine, I discovered that her information on IL2, that link, has been changed to:
http://melanomaresources.info/jane.html#homenotes
I think this is where you will find Jane's helpful information that IL2 patient's have used. Good luck and from what I have read through the years, heed Jane's advice, hang tough and know that you can do this!!
I do not have any experience with this treatment. I've been participating in this board for seven years now. That's how I know of Jane.
CarolA – Stage III
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- February 2, 2012 at 4:19 am
I hope I can do this correctly. In using the search bar for Jane from Maine, I discovered that her information on IL2, that link, has been changed to:
http://melanomaresources.info/jane.html#homenotes
I think this is where you will find Jane's helpful information that IL2 patient's have used. Good luck and from what I have read through the years, heed Jane's advice, hang tough and know that you can do this!!
I do not have any experience with this treatment. I've been participating in this board for seven years now. That's how I know of Jane.
CarolA – Stage III
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- February 2, 2012 at 5:43 am
HI Kelly7,
I did 2 courses (4 cycles) of IL-2 in 2010. I had 8 lung lesions. I remember my oncologist at the time saying that the lung was one of the better sites for IL-2 treatment. And in fact it turned out that way for me at the time, my lungs, at least, remain clear as far as scans can detect today.
It's great that you're helping to support your brother. Everybody's different, but the thing I would have wanted most control of during my cycles involved wanting different food (e.g. chinese takeout, say) and liquid (water in glass bottles, not plastic, the plastic bottle taste was intensified and almost unbearable for me during treatment). But while there's commonality, everyone's set of responses are a little different. He'll likely be shutting down a lot during treatment, TV was about all I could tolerate in the thick of it — e.g., not reading, surfing, etc.
BUT
Unexpected supplements or anything else unexpected in the body during the treatment may inadvertently cause the team to stop treatment earlier (less bags of IL-2) than they otherwise would, e.g., if any of the vitals/etc. they're checking around the clock go beyond tolerated limits. For example some supplements act as blood thinners.
High-dose IL-2 is a very intense treatment where they are pushing the patient's body to its limits (if done right) to have the highest hope of success. The goal during a given cycle is to receive as many doses as possible (up to 14 bags of IL-2, each bag spaced 8 hours apart is the standard high dose regiment). The highest # bags I tolerated in any one cycle is 11 I believe.
I was given a list of both drugs and OTC/supplements to avoid while being treated with IL-2. There's very little chance anything like that will help the treatment much, but a more than a small chance to adversely impact the treatment.
As far as diet, I don't believe in anything that seems extreme, because someone going through this doesn't need shocks to the body of any kind, including radical diet changes. Everything in moderation is my best advice, but I do agree with (somewhat) reducing sugar!
Good luck with your brother's treatment.
Kyle
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- February 2, 2012 at 5:43 am
HI Kelly7,
I did 2 courses (4 cycles) of IL-2 in 2010. I had 8 lung lesions. I remember my oncologist at the time saying that the lung was one of the better sites for IL-2 treatment. And in fact it turned out that way for me at the time, my lungs, at least, remain clear as far as scans can detect today.
It's great that you're helping to support your brother. Everybody's different, but the thing I would have wanted most control of during my cycles involved wanting different food (e.g. chinese takeout, say) and liquid (water in glass bottles, not plastic, the plastic bottle taste was intensified and almost unbearable for me during treatment). But while there's commonality, everyone's set of responses are a little different. He'll likely be shutting down a lot during treatment, TV was about all I could tolerate in the thick of it — e.g., not reading, surfing, etc.
BUT
Unexpected supplements or anything else unexpected in the body during the treatment may inadvertently cause the team to stop treatment earlier (less bags of IL-2) than they otherwise would, e.g., if any of the vitals/etc. they're checking around the clock go beyond tolerated limits. For example some supplements act as blood thinners.
High-dose IL-2 is a very intense treatment where they are pushing the patient's body to its limits (if done right) to have the highest hope of success. The goal during a given cycle is to receive as many doses as possible (up to 14 bags of IL-2, each bag spaced 8 hours apart is the standard high dose regiment). The highest # bags I tolerated in any one cycle is 11 I believe.
I was given a list of both drugs and OTC/supplements to avoid while being treated with IL-2. There's very little chance anything like that will help the treatment much, but a more than a small chance to adversely impact the treatment.
As far as diet, I don't believe in anything that seems extreme, because someone going through this doesn't need shocks to the body of any kind, including radical diet changes. Everything in moderation is my best advice, but I do agree with (somewhat) reducing sugar!
Good luck with your brother's treatment.
Kyle
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- February 2, 2012 at 5:43 am
HI Kelly7,
I did 2 courses (4 cycles) of IL-2 in 2010. I had 8 lung lesions. I remember my oncologist at the time saying that the lung was one of the better sites for IL-2 treatment. And in fact it turned out that way for me at the time, my lungs, at least, remain clear as far as scans can detect today.
It's great that you're helping to support your brother. Everybody's different, but the thing I would have wanted most control of during my cycles involved wanting different food (e.g. chinese takeout, say) and liquid (water in glass bottles, not plastic, the plastic bottle taste was intensified and almost unbearable for me during treatment). But while there's commonality, everyone's set of responses are a little different. He'll likely be shutting down a lot during treatment, TV was about all I could tolerate in the thick of it — e.g., not reading, surfing, etc.
BUT
Unexpected supplements or anything else unexpected in the body during the treatment may inadvertently cause the team to stop treatment earlier (less bags of IL-2) than they otherwise would, e.g., if any of the vitals/etc. they're checking around the clock go beyond tolerated limits. For example some supplements act as blood thinners.
High-dose IL-2 is a very intense treatment where they are pushing the patient's body to its limits (if done right) to have the highest hope of success. The goal during a given cycle is to receive as many doses as possible (up to 14 bags of IL-2, each bag spaced 8 hours apart is the standard high dose regiment). The highest # bags I tolerated in any one cycle is 11 I believe.
I was given a list of both drugs and OTC/supplements to avoid while being treated with IL-2. There's very little chance anything like that will help the treatment much, but a more than a small chance to adversely impact the treatment.
As far as diet, I don't believe in anything that seems extreme, because someone going through this doesn't need shocks to the body of any kind, including radical diet changes. Everything in moderation is my best advice, but I do agree with (somewhat) reducing sugar!
Good luck with your brother's treatment.
Kyle
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- February 2, 2012 at 11:55 pm
I think there is some excellent research on Petra-Sol in regards to cancer. I am also taking that and the double helix water. I don't really know too much about the water. I think everyone should be making sure their Vit D levels are in the optimal range.
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- February 2, 2012 at 11:55 pm
I think there is some excellent research on Petra-Sol in regards to cancer. I am also taking that and the double helix water. I don't really know too much about the water. I think everyone should be making sure their Vit D levels are in the optimal range.
-
- February 3, 2012 at 7:25 am
Today I take a very small amount of Vitamin D (700 IU) daily, to make up a little bit for what I miss while avoiding the sun. I don't want to overdo it because of Gilbert's Syndrome though.
Vitamin D is said to boost bilirubin levels, one of the parameters they watched during my IL-2 treatment. I was diagnosed by the onc doing the IL-2 as probably having Gilbert's syndrome due to my elevated bilirubine levels before IL-2 even started. Because of that I was given an allowance for higher bilirubin levels during IL-2 treatment.
Even a seemingly benign supplement like Vitamin D could cause problems during IL-2 — especially at mega doses.
-
- February 3, 2012 at 7:25 am
Today I take a very small amount of Vitamin D (700 IU) daily, to make up a little bit for what I miss while avoiding the sun. I don't want to overdo it because of Gilbert's Syndrome though.
Vitamin D is said to boost bilirubin levels, one of the parameters they watched during my IL-2 treatment. I was diagnosed by the onc doing the IL-2 as probably having Gilbert's syndrome due to my elevated bilirubine levels before IL-2 even started. Because of that I was given an allowance for higher bilirubin levels during IL-2 treatment.
Even a seemingly benign supplement like Vitamin D could cause problems during IL-2 — especially at mega doses.
-
- February 3, 2012 at 7:25 am
Today I take a very small amount of Vitamin D (700 IU) daily, to make up a little bit for what I miss while avoiding the sun. I don't want to overdo it because of Gilbert's Syndrome though.
Vitamin D is said to boost bilirubin levels, one of the parameters they watched during my IL-2 treatment. I was diagnosed by the onc doing the IL-2 as probably having Gilbert's syndrome due to my elevated bilirubine levels before IL-2 even started. Because of that I was given an allowance for higher bilirubin levels during IL-2 treatment.
Even a seemingly benign supplement like Vitamin D could cause problems during IL-2 — especially at mega doses.
-
- February 2, 2012 at 11:55 pm
I think there is some excellent research on Petra-Sol in regards to cancer. I am also taking that and the double helix water. I don't really know too much about the water. I think everyone should be making sure their Vit D levels are in the optimal range.
-
- February 3, 2012 at 4:38 am
Kelly,
i have went thru three rounds of IL-2 (six weeks of treatments) The main things my IL-2-Melanoma speialist Oncologist warned me about taking wa blood thinner. They will give many shots of blood thinners duriig the week of each Il-2 hospitalization. You are welcome to read my experiences in my Profile. Jane is a wonderful lady with much great advice (She has now been NED for over 5 years since her IL-2 treatments!). The items I push the most is to drink a steady amount of fluids to keep the kidney function up. The urine output and a low blood pressure were my two main problems. I did learn later that black licorace raises ones blood pressure ( few people get high blood prssure from IL-2, be sure what is happening with your brother to learn what effects he experiences.) Food starts to taste poorly after about three days, but the taste ability returns about three-4 days after discharge. Tell him not to try to "man it out" when he starts to get cold feet (which usually turns into the RIGORS – extremely bad chills/shaking). If the nurses are told when this first starts they have meds which will readily control the worst of the side effects. Get the meds immediatel!) Same goes for fealings of nausea.
Good luck to you and your brother. IL-2 is tough, but is do-able. and still provide the best long term results of any melanoma treatment.
-
- February 3, 2012 at 4:38 am
Kelly,
i have went thru three rounds of IL-2 (six weeks of treatments) The main things my IL-2-Melanoma speialist Oncologist warned me about taking wa blood thinner. They will give many shots of blood thinners duriig the week of each Il-2 hospitalization. You are welcome to read my experiences in my Profile. Jane is a wonderful lady with much great advice (She has now been NED for over 5 years since her IL-2 treatments!). The items I push the most is to drink a steady amount of fluids to keep the kidney function up. The urine output and a low blood pressure were my two main problems. I did learn later that black licorace raises ones blood pressure ( few people get high blood prssure from IL-2, be sure what is happening with your brother to learn what effects he experiences.) Food starts to taste poorly after about three days, but the taste ability returns about three-4 days after discharge. Tell him not to try to "man it out" when he starts to get cold feet (which usually turns into the RIGORS – extremely bad chills/shaking). If the nurses are told when this first starts they have meds which will readily control the worst of the side effects. Get the meds immediatel!) Same goes for fealings of nausea.
Good luck to you and your brother. IL-2 is tough, but is do-able. and still provide the best long term results of any melanoma treatment.
-
- February 7, 2012 at 8:53 pm
Thank you everyone for the advise. My brother started yesterday and has had 3 bags so far. The only side effect at the moment are the chills, but the nurses are giving him meds for that. We also have heating blanket and other things to keep him warm.
He is being a trooper and Im very proud of him!!!!
I am 6 months pregnant and I was worried that I wasnt going to be able to visit him in the hospital, but his doctor gave me the all clear!
Thank you everyone for your encouraging words and advise!!!!
-
- February 7, 2012 at 8:53 pm
Thank you everyone for the advise. My brother started yesterday and has had 3 bags so far. The only side effect at the moment are the chills, but the nurses are giving him meds for that. We also have heating blanket and other things to keep him warm.
He is being a trooper and Im very proud of him!!!!
I am 6 months pregnant and I was worried that I wasnt going to be able to visit him in the hospital, but his doctor gave me the all clear!
Thank you everyone for your encouraging words and advise!!!!
-
- February 7, 2012 at 8:53 pm
Thank you everyone for the advise. My brother started yesterday and has had 3 bags so far. The only side effect at the moment are the chills, but the nurses are giving him meds for that. We also have heating blanket and other things to keep him warm.
He is being a trooper and Im very proud of him!!!!
I am 6 months pregnant and I was worried that I wasnt going to be able to visit him in the hospital, but his doctor gave me the all clear!
Thank you everyone for your encouraging words and advise!!!!
-
- February 3, 2012 at 4:38 am
Kelly,
i have went thru three rounds of IL-2 (six weeks of treatments) The main things my IL-2-Melanoma speialist Oncologist warned me about taking wa blood thinner. They will give many shots of blood thinners duriig the week of each Il-2 hospitalization. You are welcome to read my experiences in my Profile. Jane is a wonderful lady with much great advice (She has now been NED for over 5 years since her IL-2 treatments!). The items I push the most is to drink a steady amount of fluids to keep the kidney function up. The urine output and a low blood pressure were my two main problems. I did learn later that black licorace raises ones blood pressure ( few people get high blood prssure from IL-2, be sure what is happening with your brother to learn what effects he experiences.) Food starts to taste poorly after about three days, but the taste ability returns about three-4 days after discharge. Tell him not to try to "man it out" when he starts to get cold feet (which usually turns into the RIGORS – extremely bad chills/shaking). If the nurses are told when this first starts they have meds which will readily control the worst of the side effects. Get the meds immediatel!) Same goes for fealings of nausea.
Good luck to you and your brother. IL-2 is tough, but is do-able. and still provide the best long term results of any melanoma treatment.
-
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