what are peoples experience with DCIT?

Hi Andrew,

More information helps somewhat.  You are one who would prefer a more holistic or naturalistic approach, but should weigh that preference against the potential benefits of various non-natural or chemical approaches.  Given your history of difficult surgery, that preference would be understandable.  However, what you seem to be now weighing is that pros and cons of one chemical treatment versus another.  That said, you need to look at the literature availabe to you, or start Googling, like many of us have.  I think you will find that Ipi appears to be more effective than dacarbazine, perhaps much more so.  I have been down a similar path, so I speak with some knowledge.

Dacarbazie works by attacking cancer cells directly, and has many potential and severe side effects.  Ipilimumab works by enabling the body's own immune system to recognize and attack the cancer, and also has potential side effects, some severe.  So if you are looking for the more "natural" approach, it could be strongly argued that Ipi is the better choice on that basis.  As for me, I reached the decision that Ipi offered me the best chance to successfully fight this disease, and it is working for me, so I guess I have a bias.

Best Wishes,

Jim

Hi Andrew,

More information helps somewhat.  You are one who would prefer a more holistic or naturalistic approach, but should weigh that preference against the potential benefits of various non-natural or chemical approaches.  Given your history of difficult surgery, that preference would be understandable.  However, what you seem to be now weighing is that pros and cons of one chemical treatment versus another.  That said, you need to look at the literature availabe to you, or start Googling, like many of us have.  I think you will find that Ipi appears to be more effective than dacarbazine, perhaps much more so.  I have been down a similar path, so I speak with some knowledge.

Dacarbazie works by attacking cancer cells directly, and has many potential and severe side effects.  Ipilimumab works by enabling the body's own immune system to recognize and attack the cancer, and also has potential side effects, some severe.  So if you are looking for the more "natural" approach, it could be strongly argued that Ipi is the better choice on that basis.  As for me, I reached the decision that Ipi offered me the best chance to successfully fight this disease, and it is working for me, so I guess I have a bias.

Best Wishes,

Jim

Hi Andrew

First, I'm sorry to hear that you have advanced to Stage IV.  I too was considering the combination IV vitamin C and chemo offered at the Jewish General as a clinicial trial in Montreal but then my melanoma was starting to spread rampantly out of control on my leg…so I decided to do temodar (oral chemo) which is definitely not as harsh on your system. That's an option  but most likely as in Quebec not covered by medicare in BC unlike dacarabazine, standard of care…my husband's health plan covered the one treatment of $4000 (90%) for 5 days…something to consider if you have a work plan. 

Temodar was obviously not working for me as my melanoma was still spreading quickly with purplish mottling underneath (lesions?) and I was very very concerned.  My RVH oncologist placed me on the compassionate ip trial (I'm B-RAF negative), this fortunately has stopped (slowed down?) the spreading…a lot of black spots are drying up and the purplish mottling is fading considerably.  I've not had any side effects except for a mild headache and a little fatique, I know you mentioned concern about colitis etc…that side effect applies to about 10% of the patients taking ipi, with the rash seeming to be the number one problem although controllable (and also might mean you are a responder!). I know Sharyn from Newfoundland has about the same side effects as I do and she is about one treatment behind, we're meeting up this week in Montreal.  We're both keeping quite active, she might be up at her cabin so when she comes back she will hopefully respond to you with her thoughts.  I have my 4th treatment soon and am looking forward to scans to see if there is improvement..especially the recent lesion on my lung, then I will continue with ipi elsewise perhaps IL-21.

Dr. Smylie in Edmonton (coordinates have been provided earlier) has been mentioned in several e-mails and all I hear is 'good' about him..do considering touching base there.  Annette Cyr in Ontario has established a wonderful Web site that might be beneficial for you to review as well…she's a melanoma survivor and who is contributing back http://melanomanetwork.ca .  A terrific person to know.

Your holistic approach is quite impressive, I wish I was a vigilant, I try but not too successful but be aware Andrew that some supplements can have an adverse reaciton on treatment.  ALWAYS check with your onocologist/hospital pharmacy to ensure what can be taken while you are on treatment. When I started ipi, here is some info that I was provided with…I am allowed to take Appleboost (vitamin C made of concentrated apple peel) and Vitamin D3.

CoQ10: should stop (interaction that could stop effectiveness of chemo)

Cod LIver Oil: should stop (risk to have bleeding due to lowering platelets)

Probiotic 15-35: NO

Tumeric Extract with bioperine: NO

Best, Val

Hi Andrew

First, I'm sorry to hear that you have advanced to Stage IV.  I too was considering the combination IV vitamin C and chemo offered at the Jewish General as a clinicial trial in Montreal but then my melanoma was starting to spread rampantly out of control on my leg…so I decided to do temodar (oral chemo) which is definitely not as harsh on your system. That's an option  but most likely as in Quebec not covered by medicare in BC unlike dacarabazine, standard of care…my husband's health plan covered the one treatment of $4000 (90%) for 5 days…something to consider if you have a work plan. 

Temodar was obviously not working for me as my melanoma was still spreading quickly with purplish mottling underneath (lesions?) and I was very very concerned.  My RVH oncologist placed me on the compassionate ip trial (I'm B-RAF negative), this fortunately has stopped (slowed down?) the spreading…a lot of black spots are drying up and the purplish mottling is fading considerably.  I've not had any side effects except for a mild headache and a little fatique, I know you mentioned concern about colitis etc…that side effect applies to about 10% of the patients taking ipi, with the rash seeming to be the number one problem although controllable (and also might mean you are a responder!). I know Sharyn from Newfoundland has about the same side effects as I do and she is about one treatment behind, we're meeting up this week in Montreal.  We're both keeping quite active, she might be up at her cabin so when she comes back she will hopefully respond to you with her thoughts.  I have my 4th treatment soon and am looking forward to scans to see if there is improvement..especially the recent lesion on my lung, then I will continue with ipi elsewise perhaps IL-21.

Dr. Smylie in Edmonton (coordinates have been provided earlier) has been mentioned in several e-mails and all I hear is 'good' about him..do considering touching base there.  Annette Cyr in Ontario has established a wonderful Web site that might be beneficial for you to review as well…she's a melanoma survivor and who is contributing back http://melanomanetwork.ca .  A terrific person to know.

Your holistic approach is quite impressive, I wish I was a vigilant, I try but not too successful but be aware Andrew that some supplements can have an adverse reaciton on treatment.  ALWAYS check with your onocologist/hospital pharmacy to ensure what can be taken while you are on treatment. When I started ipi, here is some info that I was provided with…I am allowed to take Appleboost (vitamin C made of concentrated apple peel) and Vitamin D3.

CoQ10: should stop (interaction that could stop effectiveness of chemo)

Cod LIver Oil: should stop (risk to have bleeding due to lowering platelets)

Probiotic 15-35: NO

Tumeric Extract with bioperine: NO

Best, Val

Hi Andrew,

Glad to help a little if I can.  Being a Yank, I can't say I understand the system up north very well.  Your access to Ipi is apparently conditioned on failing the "standard of care" treatment (aka Dacarbazine) – correct?   That is how the "compassionte use" trials are structured here as well, although Ipi is available in some cases as a "first line"  treatment here in clincal trials, whih I have been fortunate enough to receive. 

It sounds to me like you have a good plan – best wishes to you and let us know how you are doing.  You have some fellow Canadians who post here recieving Ipi under the compassionate use trial in Montreal, Val in Montreal and Shayrn from New Brunswick – wonderful, strong ladies who you should encounter here if you look for them.

Best,

Jim

Hi Andrew,

Glad to help a little if I can.  Being a Yank, I can't say I understand the system up north very well.  Your access to Ipi is apparently conditioned on failing the "standard of care" treatment (aka Dacarbazine) – correct?   That is how the "compassionte use" trials are structured here as well, although Ipi is available in some cases as a "first line"  treatment here in clincal trials, whih I have been fortunate enough to receive. 

It sounds to me like you have a good plan – best wishes to you and let us know how you are doing.  You have some fellow Canadians who post here recieving Ipi under the compassionate use trial in Montreal, Val in Montreal and Shayrn from New Brunswick – wonderful, strong ladies who you should encounter here if you look for them.

Best,

Jim

Andrew,

I am not from Canada but we do have many on the board who are. I may be spelling his name wrong but there is a Dr. Smylie that is a melanoma specialist in Canada that many think is very good.  While someone is a melanoma specialist for their specific cancer hospital that does not mean they have knowledge of all of the newest treatments and care or are a true specialist.

I realize for compassionate care you have to have failed a systemic treatment, that is probably why your Dr. is suggesting it. Have they sent a tumor away to see if you have the b-raf genetic mutation? 

You might want to put in a new thread commenting that you are from Canada and need info.

Wishing you all of the best,

Linda

Stage IV since 06,  NED for 2 weeks

Andrew,

I am not from Canada but we do have many on the board who are. I may be spelling his name wrong but there is a Dr. Smylie that is a melanoma specialist in Canada that many think is very good.  While someone is a melanoma specialist for their specific cancer hospital that does not mean they have knowledge of all of the newest treatments and care or are a true specialist.

I realize for compassionate care you have to have failed a systemic treatment, that is probably why your Dr. is suggesting it. Have they sent a tumor away to see if you have the b-raf genetic mutation? 

You might want to put in a new thread commenting that you are from Canada and need info.

Wishing you all of the best,

Linda

Stage IV since 06,  NED for 2 weeks

Hi Andrew,  Linda below mentioned Dr Smylie; he's a highly regarded (and devoted) melanoma specialist at the Cross Cancer Institute in Edmonton. I know he is trialing ipi – not sure what his first line treatment would be though. ( He answered an email query in the past so I'd chance it if you are interested to find out quickly.)

Also, some members of this board have met Kathy from 'Save Your Skin'  foundation in Vancouver,  she's a patient of  Dr Smylies, diagnosed stage 1V in 2003 and still out running marathons!  Her site has a message board and I belive some of the posters are patients at the Cross. 

I hope you find a doctor and treatment you are comfortable with, take care, bclinda

http://www.saveyourskin.ca/

Hi Andrew,  Linda below mentioned Dr Smylie; he's a highly regarded (and devoted) melanoma specialist at the Cross Cancer Institute in Edmonton. I know he is trialing ipi – not sure what his first line treatment would be though. ( He answered an email query in the past so I'd chance it if you are interested to find out quickly.)

Also, some members of this board have met Kathy from 'Save Your Skin'  foundation in Vancouver,  she's a patient of  Dr Smylies, diagnosed stage 1V in 2003 and still out running marathons!  Her site has a message board and I belive some of the posters are patients at the Cross. 

I hope you find a doctor and treatment you are comfortable with, take care, bclinda

http://www.saveyourskin.ca/