new here and need advice

juliababy
juliababy Member Posts: 130
edited March 2014 in Colorectal Cancer #1
Hi gang, my dear dad was diagosed with colon cancer after having a colonoscopy on July 7th. On July 31 he had appoximately 2 feet of his right colon removed, along with the 4 cm malignant mass, and 35 lymph nodes removed. Five of the 35 lymph nodes were positive. Next week he will have his port installed and the oncologist has decided to put him on a clinical trial study. He will be receiving the standard 5fu/leu and then either oxiplantin or ironotecan (not sure if i spelled either one of these correct). I got another phone call from the oncologist today to say that they added another part to this study and that if he gets picked for this category he will also receive erbitux. My question to anyone out there is - did any of you with stage 3 colon cancer also get put on a clinical trial. The oncologist says that if my dad decides not to go on the clinical trial he will treat him with again the standard 5fu/leu and oxyplantin.

I'm very confused on what to do. any suggestion will be greatly appreciated.

susana

Comments

  • Unknown
    Unknown
    #2
    Hi Susana:

    It seems to me that your father has a stage III diagnosis, the same as my husband Bert last July 2003, right colon resection, four nodes positive.

    The standard protocol for stage III is 5fu/leucavorin, which my husband was receiving from August to December. At that point, and after much research on our part, we switched oncologists and took another six months of 5fu/leucavorin and oxaliplatin, usually a stage IV first line treatment. We were able to get this because having four nodes involved placed my husband at high risk for recurrence.

    Although still not considered, at least not in the neck of the woods where I'm at, standard protocol treatment for stage III, more and more oncologists are adding oxaliplatin or CPT-11 to stage III treatments....I suppose to give an added edge.

    No clinical trial was offered to Bert through his HMO and when we switched insurance companies to go to another, more aggressive oncologist, he immediately added the oxil to the treatment, but made no reference to participation in a clinical trial...although had we wanted to, I would not have foreseen any problem in doing so.

    Monika
  • Unknown
    Unknown
    #3
    P.S. I wanted to also add that I am so sorry that you have a need to be hear but am very glad that you have found us. Cancer diagnosis is never easy and it's so good to have a place to come to where we can share ideas, learn from each other, vent, and just get the support we need. Welcome to our group and please keep us posted on your dad.

    Monika
  • juliababy
    juliababy Member Posts: 130
    #4
    unknown said:

    P.S. I wanted to also add that I am so sorry that you have a need to be hear but am very glad that you have found us. Cancer diagnosis is never easy and it's so good to have a place to come to where we can share ideas, learn from each other, vent, and just get the support we need. Welcome to our group and please keep us posted on your dad.

    Monika

    hi again Monika,

    yes, our situation does sound remarkably similar and I am extremely happy and find it encouraging to hear that your hubby is doing well.

    It's honestly been the VERY WORST summer of my 34 years here on this earth. I am extremely and I mean extremely close to both my mother and father, in fact just last year we bought a house just across the street from them and even though I obviously see them every day, I still call them every night to wish them a goodnight. Monika I can't imagine life without my Daddy and this whole situation is scaring me to death.

    To make matters worse, I work in Pathology and have done so for the past 14 years, so unfortunately I see this cancer being diagnosed every single day, including recurrences and it makes me sick. In fact, one of my good friends here, who is a pathologist herself, is the one who looked at my dads surgical specimen.

    My dad's oncologist is also a friend of mine and he is the one who suggested the clinical trial study. It's not that I don't trust his capabilities, and he truly is an excellent oncologist, but I am trying to find out as much information as possible in regards to his treatment. Dr. Rose (his name) has also told us that he feels confident he will cure him, so I guess that does make me feel better and again, I pray to God he does. I can't imagine life without Daddy.

    Please keep him in your prayers and I will make sure to keep your hubby in my prayers also.

    Thank you so much for your support and I'll "talk" to you soon.

    Susana
  • jana11
    jana11 Member Posts: 705
    #5
    unknown said:

    Hi Susana:

    It seems to me that your father has a stage III diagnosis, the same as my husband Bert last July 2003, right colon resection, four nodes positive.

    The standard protocol for stage III is 5fu/leucavorin, which my husband was receiving from August to December. At that point, and after much research on our part, we switched oncologists and took another six months of 5fu/leucavorin and oxaliplatin, usually a stage IV first line treatment. We were able to get this because having four nodes involved placed my husband at high risk for recurrence.

    Although still not considered, at least not in the neck of the woods where I'm at, standard protocol treatment for stage III, more and more oncologists are adding oxaliplatin or CPT-11 to stage III treatments....I suppose to give an added edge.

    No clinical trial was offered to Bert through his HMO and when we switched insurance companies to go to another, more aggressive oncologist, he immediately added the oxil to the treatment, but made no reference to participation in a clinical trial...although had we wanted to, I would not have foreseen any problem in doing so.

    Monika

    Hi. Like everyone here, I am sorry you have joined us. I was diagnosed at age 32 with stage 3 (3 positive lymph nodes); I am now 34 with stage 4, currently NED.

    The first pre-op chemo & radiation I had was a research protocol. I am getting my care at MD Anderson and have absolute faith in my onc. He recommended it, I read up on it and then went forward. Having >3 lymph nodes increases the risk slightly, most post-op treatments would include 2 agents (5FU/leuk count as 1). I had xeloda and CPT11 and now I am on xeloda and oxaliplatin.

    Research a little until you and your dad feel comfortable with the decision. Ask the onc for some of the articles, or to explain the research more. Good luck. None of this is easy, but it sounds like you are in good hands.
    jana
  • Unknown
    Unknown
    #6
    juliababy said:

    hi again Monika,

    yes, our situation does sound remarkably similar and I am extremely happy and find it encouraging to hear that your hubby is doing well.

    It's honestly been the VERY WORST summer of my 34 years here on this earth. I am extremely and I mean extremely close to both my mother and father, in fact just last year we bought a house just across the street from them and even though I obviously see them every day, I still call them every night to wish them a goodnight. Monika I can't imagine life without my Daddy and this whole situation is scaring me to death.

    To make matters worse, I work in Pathology and have done so for the past 14 years, so unfortunately I see this cancer being diagnosed every single day, including recurrences and it makes me sick. In fact, one of my good friends here, who is a pathologist herself, is the one who looked at my dads surgical specimen.

    My dad's oncologist is also a friend of mine and he is the one who suggested the clinical trial study. It's not that I don't trust his capabilities, and he truly is an excellent oncologist, but I am trying to find out as much information as possible in regards to his treatment. Dr. Rose (his name) has also told us that he feels confident he will cure him, so I guess that does make me feel better and again, I pray to God he does. I can't imagine life without Daddy.

    Please keep him in your prayers and I will make sure to keep your hubby in my prayers also.

    Thank you so much for your support and I'll "talk" to you soon.

    Susana

    Hello again to you too Susana. Believe me when I say that I know exactly how close your are to your parents...been there, done that, still doing it. I am an only child and there are many things in my life that I did not do because it would have taken me away from my parents. I adore/adored them both. I lost my own father almost 14 years ago when he was only 58 and it hurt so very, very bad. But my mom and husband as well as my son were all part of my support group as we were to my mom so we got through it. Now my mom is battling lung cancer and my husband colon cancer. When it rains, it pours, as they say. For now, both are doing very well and all "players" here on this earth will do everything in their power to keep it that way.

    Remember, 50% of all stage III diagnosis are cured through surgery alone...chemo adds another 15%, or so the stats say at least. That's pretty high odds in my book. Stage IV's are even surviving this awful disease in greater numbers than ever and with constant new treatments on the horizon, confident and aggressive oncologist, new and advances in equipment and treatment protocols, and a big amount of help from the Almighty, there's no reason why your daddy can't be around for many, many years to come.

    Be strong, keep the faith, and never give up hope.

    Monika
  • juliababy
    juliababy Member Posts: 130
    #7
    juliababy said:

    hi again Monika,

    yes, our situation does sound remarkably similar and I am extremely happy and find it encouraging to hear that your hubby is doing well.

    It's honestly been the VERY WORST summer of my 34 years here on this earth. I am extremely and I mean extremely close to both my mother and father, in fact just last year we bought a house just across the street from them and even though I obviously see them every day, I still call them every night to wish them a goodnight. Monika I can't imagine life without my Daddy and this whole situation is scaring me to death.

    To make matters worse, I work in Pathology and have done so for the past 14 years, so unfortunately I see this cancer being diagnosed every single day, including recurrences and it makes me sick. In fact, one of my good friends here, who is a pathologist herself, is the one who looked at my dads surgical specimen.

    My dad's oncologist is also a friend of mine and he is the one who suggested the clinical trial study. It's not that I don't trust his capabilities, and he truly is an excellent oncologist, but I am trying to find out as much information as possible in regards to his treatment. Dr. Rose (his name) has also told us that he feels confident he will cure him, so I guess that does make me feel better and again, I pray to God he does. I can't imagine life without Daddy.

    Please keep him in your prayers and I will make sure to keep your hubby in my prayers also.

    Thank you so much for your support and I'll "talk" to you soon.

    Susana

    Thanks so much Monika for those beautiful words of encouragement. I had tears in my eyes as I read the post and again, I can't thank you enough for being here for me.

    I'm not going to be around this weekend, in fact, my hubby, along with my little 3 year old girl and of course my wonderful parents are going to the beach this weekend. I think it will all do us wonders to get away, especially Daddy.

    So again thank you for your kindess, I will keep you in my thought and as always special prayers, and I'll talk to you once getting back on Tuesday.

    Susana
  • belinda25
    belinda25 Member Posts: 44
    #8
    Howdy susana,

    My dad was diagnosed with stage IV colon cancer with mets to the lungs. He is currently in the middle of his second chemotherapy cycle and seems to be coping very well with it. Although at this early stage we are unsure how the treatment is working. He is on a combination of 5FU & Oxaliplatin and is part of a clinical trial here in Australia using Avistan. I personally believe that being part of a clinical trial will only do good for your dad. Its going to give your dad the best possible treatment that is available and now days there is always something new being tried. I just believe that you never know unless your part of it and im sure, as you are, that you want the very best for your dad! Dr's and Oncologists are amazing and they try to do all they can for each patient :)

    I hope that you feel a little better reading stuff from all of us, its a great place to come when you need to. All of these guys are fantastic and its the best thing i have done to slowly get me through day by day :)

    Prayers are coming your way and stay strong

    Belinda
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #9
    belinda25 said:

    Howdy susana,

    My dad was diagnosed with stage IV colon cancer with mets to the lungs. He is currently in the middle of his second chemotherapy cycle and seems to be coping very well with it. Although at this early stage we are unsure how the treatment is working. He is on a combination of 5FU & Oxaliplatin and is part of a clinical trial here in Australia using Avistan. I personally believe that being part of a clinical trial will only do good for your dad. Its going to give your dad the best possible treatment that is available and now days there is always something new being tried. I just believe that you never know unless your part of it and im sure, as you are, that you want the very best for your dad! Dr's and Oncologists are amazing and they try to do all they can for each patient :)

    I hope that you feel a little better reading stuff from all of us, its a great place to come when you need to. All of these guys are fantastic and its the best thing i have done to slowly get me through day by day :)

    Prayers are coming your way and stay strong

    Belinda

    Hiya susana--stage 11 here and in rem. now for 7 months. Take on all this good advice from the guys here. Take it ALL with love/prayers and support. This "family" we have is our link to better times ahead.My mum passed from brain cancer--dad from kidney/heart failure(at 41!) There is always a massive tug on our hearts when confronted with all this illness--be tough--b safe--b well susana!!!!
    Have a great day at the beach and give your dad our love--kanga n Jen
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #10
    hi susana,

    welcome to our boards.

    There is a doctor who used to do research with Memorial Sloan Kettering who recently put out info on erbitux and avastin and the FOLFOX protocol. His website is www.cancerdecisions.com

    Dr. Ralph Moss also wrote a book called Questioning Chemo which was the first book I read when I got my dx three years ago. It gives a lot of info on different chemos.

    I really really good book to read is Beating Cancer with Nutrition by Dr. Patrick Quillin. It tells which supplements to take for what kinds of cancers and what the supplements do.

    I have been down this road with my sister (who did not make it and died at 33-- 5 months after having a baby girl) and I understand your concern and fear of losing a loved one to cancer.

    After my own dx I saw first hand how sometimes it is easier to be the "patient" than the caregiver.

    Hope this helps.

    peace, emily

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