The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

what are peoples experience with DCIT?

Forums General Melanoma Community what are peoples experience with DCIT?

  • Post
    Andrew Langsford
    Participant

    I have had DCIT recommended to me by an oncologist. He said that after 2 doses he can tell whether it is taking effect or not.  Has anyone had this advice, or a good experience with DCIT?  The ipi would be the next thing, but it has come with a warning of drastic side effects to the bowels, anyone experience this?

    Thanks for any help and experience.

     

    Andrew

    I have had DCIT recommended to me by an oncologist. He said that after 2 doses he can tell whether it is taking effect or not.  Has anyone had this advice, or a good experience with DCIT?  The ipi would be the next thing, but it has come with a warning of drastic side effects to the bowels, anyone experience this?

    Thanks for any help and experience.

     

    Andrew

    Loading spinner
Viewing 11 reply threads
  • Replies
      Lori C
      Participant

      Is this DTIC , or dacarbazine? 

      Some people do respond and have good results with it with minimal side effects.  Will did not and his cancer advanced rather aggressively under it.  It seems to be the "standard treatment" you "need" to fail before being able to qualify for other treatments under some protocols. 

      Loading spinner
      Lori C
      Participant

      Is this DTIC , or dacarbazine? 

      Some people do respond and have good results with it with minimal side effects.  Will did not and his cancer advanced rather aggressively under it.  It seems to be the "standard treatment" you "need" to fail before being able to qualify for other treatments under some protocols. 

      Loading spinner
      Jim in Denver
      Participant

      Hi Andrew,

      DTIC, or Dacarbazine, is considered the "standard of care" for melanoma, but this term is highly misleading.  You should do more research on your own about what alternatives are available to you.  Is your Oncologist a specialist in melanoma?  If not, maybe you should seek one out who knows more about this particular disease.  Since you offer no other details about your present state (when diagnosed, what stage, etc), you will not get as useful feedback here as you would if you are willing to share more information. 

      IMHO, I would find a good specialist who can offer you more options for treatment.  I am taking Ipi in combination with Temador.  It is a very promising treatment with more upside that DTIC.  Is does have a number  potential side effects, including diharrea and gastrointestinal issues, but these are typically fairly minor and/or can be mitigated.  Learn all you can and take charge of your treatment.  My advice is to get the best Doctor(s) and hospitials you can find, and not wait long to move forward with a plan.

      Best Wishes,

      Jim

      Loading spinner
      Jim in Denver
      Participant

      Hi Andrew,

      DTIC, or Dacarbazine, is considered the "standard of care" for melanoma, but this term is highly misleading.  You should do more research on your own about what alternatives are available to you.  Is your Oncologist a specialist in melanoma?  If not, maybe you should seek one out who knows more about this particular disease.  Since you offer no other details about your present state (when diagnosed, what stage, etc), you will not get as useful feedback here as you would if you are willing to share more information. 

      IMHO, I would find a good specialist who can offer you more options for treatment.  I am taking Ipi in combination with Temador.  It is a very promising treatment with more upside that DTIC.  Is does have a number  potential side effects, including diharrea and gastrointestinal issues, but these are typically fairly minor and/or can be mitigated.  Learn all you can and take charge of your treatment.  My advice is to get the best Doctor(s) and hospitials you can find, and not wait long to move forward with a plan.

      Best Wishes,

      Jim

      Loading spinner
      Andrew Langsford
      Participant

      Thanks for the replies. I guess I was vague in my post. I was diagnosed in March 2009. After the primary was removed I had a the sentinal biopsy which revealed 50% melanoma in the nodes selected. I received the results while overseas working. I came home in August and had another surgery in Sept 09 to remove all infected nodes from the area of my left armpit. that turned out to be 27 nodes. I refused radiation at the time and chose to carry out my healing with a more holistic approach, through a drastic diet change to all organic with no sugar, no mammal meat or poultry, no gluten, and no dairy. In the spring of 2010 I could feel that something was happening in my surgery area. For the first time it showed up on the Pet Scan in the armpit and some in between my minor and major pec muscle. An aggressive surgery followed with the skin being removed and lots of removal of nerves, muscle and connective tissue. They cut a large piece off my leg called a flap and attached it under my arm to replace the area removed. I went to work, (and still am) regaining use of that arm and shoulder. I also spoke with a very wise and successful healer, and integrated doctor in Vancouver. He connected me with a radiologist who has a more understanding approach to melanoma, that was in July 2010.

      My recent pet scan showed more spreading and official Stage IV status. With some showing up in my liver. I still have a hard time with the low success drugs, vrs the damage they do to your body's own healing system. I have seen 2 surgical oncologists that specialize in melanoma, and 2 medical oncologists. I am getting a referrel to another integrated oncologist who has had many successful stories of stage IV patients using both methods of healing. A combination of IV vitamin C  and chemo has yielded great results with high success rates and minimal side effects. I think that will be the road I try with DTIC and then maybe the ipi .

       Thanks

       

      Andrew

      Loading spinner
      Andrew Langsford
      Participant

      Thanks for the replies. I guess I was vague in my post. I was diagnosed in March 2009. After the primary was removed I had a the sentinal biopsy which revealed 50% melanoma in the nodes selected. I received the results while overseas working. I came home in August and had another surgery in Sept 09 to remove all infected nodes from the area of my left armpit. that turned out to be 27 nodes. I refused radiation at the time and chose to carry out my healing with a more holistic approach, through a drastic diet change to all organic with no sugar, no mammal meat or poultry, no gluten, and no dairy. In the spring of 2010 I could feel that something was happening in my surgery area. For the first time it showed up on the Pet Scan in the armpit and some in between my minor and major pec muscle. An aggressive surgery followed with the skin being removed and lots of removal of nerves, muscle and connective tissue. They cut a large piece off my leg called a flap and attached it under my arm to replace the area removed. I went to work, (and still am) regaining use of that arm and shoulder. I also spoke with a very wise and successful healer, and integrated doctor in Vancouver. He connected me with a radiologist who has a more understanding approach to melanoma, that was in July 2010.

      My recent pet scan showed more spreading and official Stage IV status. With some showing up in my liver. I still have a hard time with the low success drugs, vrs the damage they do to your body's own healing system. I have seen 2 surgical oncologists that specialize in melanoma, and 2 medical oncologists. I am getting a referrel to another integrated oncologist who has had many successful stories of stage IV patients using both methods of healing. A combination of IV vitamin C  and chemo has yielded great results with high success rates and minimal side effects. I think that will be the road I try with DTIC and then maybe the ipi .

       Thanks

       

      Andrew

      Loading spinner
        Jim in Denver
        Participant

        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

        Loading spinner
        Jim in Denver
        Participant

        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

        Loading spinner
        ValinMtl
        Participant

        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

        Loading spinner
        ValinMtl
        Participant

        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

        Loading spinner
      Cate
      Participant

      Hi Andrew, sorry to hear you are a member of our club.  DTIC did not work for my father and as I think most people here would agree, you need to see a Melanoma specialist!!!!!  A conventional melanoma specialist first and foremost, then look into integrating alternative medicine as you and the specialist see fit.   I wish you the best in your decision and am willing to chat at any time.  Take Care.

      Loading spinner
      Cate
      Participant

      Hi Andrew, sorry to hear you are a member of our club.  DTIC did not work for my father and as I think most people here would agree, you need to see a Melanoma specialist!!!!!  A conventional melanoma specialist first and foremost, then look into integrating alternative medicine as you and the specialist see fit.   I wish you the best in your decision and am willing to chat at any time.  Take Care.

      Loading spinner
      Andrew Langsford
      Participant

      thanks for the help

      The oncologists  have seen are the melanoma specialists in their cancer agencies. That is Calgary and Vancouver. The consensus between them is the initial round of DTIC then start on the ipi. Which comes to my first question as the one doctor said that a couple rounds of DTIC will reveal whether that will work for me. Then the ipi for 3 rounds will reveal if it is effective.  

      Ipi is just available for compassionate care in Canada and hasn't yet been passed as primary care yet. I have not heard of the drug combos available here yet,  that you folks are receiving in trials in the US.

      I am hoping that the next doctor I see next week will take more time with me and be more progressive as he is not tied to an agency with thousands of patients.

      Loading spinner
      Andrew Langsford
      Participant

      thanks for the help

      The oncologists  have seen are the melanoma specialists in their cancer agencies. That is Calgary and Vancouver. The consensus between them is the initial round of DTIC then start on the ipi. Which comes to my first question as the one doctor said that a couple rounds of DTIC will reveal whether that will work for me. Then the ipi for 3 rounds will reveal if it is effective.  

      Ipi is just available for compassionate care in Canada and hasn't yet been passed as primary care yet. I have not heard of the drug combos available here yet,  that you folks are receiving in trials in the US.

      I am hoping that the next doctor I see next week will take more time with me and be more progressive as he is not tied to an agency with thousands of patients.

      Loading spinner
        Jim in Denver
        Participant

        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

        Loading spinner
        Jim in Denver
        Participant

        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

        Loading spinner
        lhaley
        Participant

        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

        Loading spinner
        lhaley
        Participant

        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

        Loading spinner
        bcl
        Participant

        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/

         

        Dr. Michael Smylie
        Division of Medical Oncology
        Department of Oncology
        University of Alberta
        Cross Cancer Institute
        11560 University Avenue
        Edmonton, Alberta
        T6G 1Z2
        Phone: (780) 432-8757
        Fax: (780) 432-8888
        Email: [email protected]

         

         

         

         

         

         

         

         

         

         

         

         

         
           
           
           

         

         

         

         

        Loading spinner
        bcl
        Participant

        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/

         

        Dr. Michael Smylie
        Division of Medical Oncology
        Department of Oncology
        University of Alberta
        Cross Cancer Institute
        11560 University Avenue
        Edmonton, Alberta
        T6G 1Z2
        Phone: (780) 432-8757
        Fax: (780) 432-8888
        Email: [email protected]

         

         

         

         

         

         

         

         

         

         

         

         

         
           
           
           

         

         

         

         

        Loading spinner
      JJO
      Participant

      Andrew,

      I have completed the 4 rounds of IPI treatment and experienced side effects of the rash and the bowel distress.

      These were managed by my doctor. Immodium was used for the bowels and calmed them within a day or two. The rash was a little more difficult but I was put on Hydroxyzine and it helped some. I also used Sarna lotion by the bottle.

      I would not consider the side effect to my bowels drastic, basically I had sever diarrhea and cramping and my Oncologist was on top of it and managed it. From what I understand the drastic side effects come into play if you develop and infection but not really sure as mine never progressed that far.

      To tell you a little about me, I am stage IV and have multiple tumors throughout my body. During the IPI I also underwent radiation to the lymph nodes under my arm along with a tumor in the humorous bone of the same  arm. Then I needed radiation on my sacrum as a tumor was pressing on the sciatic nerve causing a lot of pain.

      Prior to the IPI, I was treated with the GMC-SF and IL-2 combination injections. This worked very well on the tumors that were injected. However, systemically I developed, 3 additional tumors including 1 in the brain. This is when I was moved to the IPI trial.

      To just updated folks on the status of my IPI treatments. I have completed all 4 rounds at Franklin Square Hospital outside of Baltimore. I have had a follow up brain MRI and a second brain tumor was found since I began the IPI treatments. I have had other follow up tests(CT"s etc) and meet with the Oncologist tomorrow to learn the results. I   already know that I have developed another tumor under my breast as you can see and feel it.

      I hope this helps and I would just add that I would not let the potential side effect of IPI prevent me from going into the trial.

      Good Luck

      Jody

      Loading spinner
      JJO
      Participant

      Andrew,

      I have completed the 4 rounds of IPI treatment and experienced side effects of the rash and the bowel distress.

      These were managed by my doctor. Immodium was used for the bowels and calmed them within a day or two. The rash was a little more difficult but I was put on Hydroxyzine and it helped some. I also used Sarna lotion by the bottle.

      I would not consider the side effect to my bowels drastic, basically I had sever diarrhea and cramping and my Oncologist was on top of it and managed it. From what I understand the drastic side effects come into play if you develop and infection but not really sure as mine never progressed that far.

      To tell you a little about me, I am stage IV and have multiple tumors throughout my body. During the IPI I also underwent radiation to the lymph nodes under my arm along with a tumor in the humorous bone of the same  arm. Then I needed radiation on my sacrum as a tumor was pressing on the sciatic nerve causing a lot of pain.

      Prior to the IPI, I was treated with the GMC-SF and IL-2 combination injections. This worked very well on the tumors that were injected. However, systemically I developed, 3 additional tumors including 1 in the brain. This is when I was moved to the IPI trial.

      To just updated folks on the status of my IPI treatments. I have completed all 4 rounds at Franklin Square Hospital outside of Baltimore. I have had a follow up brain MRI and a second brain tumor was found since I began the IPI treatments. I have had other follow up tests(CT"s etc) and meet with the Oncologist tomorrow to learn the results. I   already know that I have developed another tumor under my breast as you can see and feel it.

      I hope this helps and I would just add that I would not let the potential side effect of IPI prevent me from going into the trial.

      Good Luck

      Jody

      Loading spinner
Viewing 11 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.