Many questions

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  • Douggie
    Douggie Member Posts: 29
    nudgie said:

    After reading your story I was SHOCKED. I could not believe that the doctor had the nerve to tell you NOT get another opinion and it would not be in the best interest of your father.

    It is YOUR father at the hospital and YOUR father that is going through this right now. Someone needs to take CONTROL of his treatment and doctors. Sometimes doctors DON'T always know best. When I was DX in 7/06 with colon cancer, I took control right away and stayed in control until I finished chemo. My ONC Doc was more than happy for me to get a second opinion, but I trusted him and his resolution. I was VERY lucky to have the surgeon and team I got.

    Don't let doctors and hospitals intimidate you. Do what is best for YOUR father.

    Huges and kisses your way.

    Ok I have some more info. There were 2 reasons why they operated at the begining.
    1) he had 80% blockage
    2) the dieing cancer tissue could have left a hole in his intestine.
    I kinda ruled out the first one. I would always ask him if he was going to the bathroom ok and he would always tell me daily. He had no problem going before the surgury.
    The loss of apetite. They said it could be from the lymph nodes swelling and pushing on his stomach and making his stomach seem full.

    Well the sergon said that he would remove a couple of the lymph nodes arround his stomach to see if that would help. He ended up not doing it.
    My father had a sigmoid coleclomy and gastrojejunostomy.
    I asked the doctor about them removing the lymph nodes. He said the sergion maynot have had time.
    Anyway, they are giving him chemo today.
    He's schedualed to get:
    oxaliplatin 170 mg
    Leucovorin 400 mg
    Then 200 mg
    5FU 800 mg
    2nd 1200 mg
  • Patrusha
    Patrusha Member Posts: 487
    Douggie said:

    Ok I have some more info. There were 2 reasons why they operated at the begining.
    1) he had 80% blockage
    2) the dieing cancer tissue could have left a hole in his intestine.
    I kinda ruled out the first one. I would always ask him if he was going to the bathroom ok and he would always tell me daily. He had no problem going before the surgury.
    The loss of apetite. They said it could be from the lymph nodes swelling and pushing on his stomach and making his stomach seem full.

    Well the sergon said that he would remove a couple of the lymph nodes arround his stomach to see if that would help. He ended up not doing it.
    My father had a sigmoid coleclomy and gastrojejunostomy.
    I asked the doctor about them removing the lymph nodes. He said the sergion maynot have had time.
    Anyway, they are giving him chemo today.
    He's schedualed to get:
    oxaliplatin 170 mg
    Leucovorin 400 mg
    Then 200 mg
    5FU 800 mg
    2nd 1200 mg

    Douggie,

    You're right here in Michigan. Have you thought of contacting the comprehensive cancer center at University of Michigan here in Ann Arbor? Give them a call. I'd recommend my oncologist, Dr. Zalupski, for a second opinion. Try this link:

    http://www.cancer.med.umich.edu/

    Let us know how it goes.....
  • onein10000
    onein10000 Member Posts: 6
    Douggie,

    C225 is another name for Cetuximab, aka Erbitux. You might try a Google search on "C225" (be sure to use the " "). Other good resources for information are Medscape.com (it requires a sinple registration, but you don't get any spam) which gave me 45 hits or cancer.org (the American Cancer Society website) which returned 10 hits.

    Let me know if you have any other questions or need any additional information.
  • jerseysue
    jerseysue Member Posts: 624 Member
    Patrusha said:

    Douggie,

    You're right here in Michigan. Have you thought of contacting the comprehensive cancer center at University of Michigan here in Ann Arbor? Give them a call. I'd recommend my oncologist, Dr. Zalupski, for a second opinion. Try this link:

    http://www.cancer.med.umich.edu/

    Let us know how it goes.....

    Patrusha I seen Dr Zalupski for my second opinion. He was very straight forward and we talked about me going there for treatment instead of my town Bay City, Mi. He said it would be the same so instead of driving all the way to Ann Arbor that he stated to stay and get the treatments in my town. He said not that I wouldn't want you here but it would be easier for you. I thought he was a very nice guy. Just wanted to let you know this. Not even sure you'll read this post again. Sue
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    The more that you tell us the more disturbing this whole scenario becomes in my mind. I guess it does not matter though because all you can do is get a second opinion or try to trust that your fathers doctors know what they are doing. The thing that seems really strange to me though is that they are not even willing to give your father a CT scan due to concerns about his liver, yet they are willing to give him highly toxic chemo drugs! That does not make sense to me at all.
    I will keep you in my thoughts and I certainly hope the best for your father and yourself.
    God bless,
    Susan H.
  • Douggie
    Douggie Member Posts: 29

    The more that you tell us the more disturbing this whole scenario becomes in my mind. I guess it does not matter though because all you can do is get a second opinion or try to trust that your fathers doctors know what they are doing. The thing that seems really strange to me though is that they are not even willing to give your father a CT scan due to concerns about his liver, yet they are willing to give him highly toxic chemo drugs! That does not make sense to me at all.
    I will keep you in my thoughts and I certainly hope the best for your father and yourself.
    God bless,
    Susan H.

    Ok, I got more information this morning.
    The reason they did chemo so early is because theyre thinking that the METs in his liver are making the liver do somethng to the protiens that are making all the fluid dranage. They are hoping that the chemo will turn this arround for him.
  • Douggie
    Douggie Member Posts: 29
    Douggie said:

    Ok, I got more information this morning.
    The reason they did chemo so early is because theyre thinking that the METs in his liver are making the liver do somethng to the protiens that are making all the fluid dranage. They are hoping that the chemo will turn this arround for him.

    I spoke with the oncologist again this morning. I mentioned that the surgion he is working with was talking about schedualling a ct scan today.

    My father seems to be tolerating the chemo rather well. It was still being administered when I left. When he told the oncologist that he feel good piece of cake he just made a remark that getting th IV is the easy part then went on about something else. I know there will be side effects.

    I also asked the doctor about dosage. Where it fell...high medium or low. He said Im going to hit this head on (something I heard from him repeatedly). Whats the plan of action.....Same.

    Man this is all really getting to me. I had to vent lastnight about them giving him chemo right away. I talked with the charge nurse...Shes only been there for 3 weeks (atleast thats what I recall) she referred me to his nurse. She was very nice and knowledgeable. I told her my story about the signs and she said if it were her family member she would move him. As time got closer to his treatment I grew more disturbed. I pulled the PT lady over and vented on her a bit....explained that my sibling would like to see him stay there to be close to family. I dont recall saying it but I guess I said something about she must be getting a bonus if she gets him to stay. It was totally out of line. Anyway, They told her I said that. It was rude (to say the least) of me to say that. But I think its more rude and very unprofessional to repeat it.
  • AnnieM939
    AnnieM939 Member Posts: 38
    Douggie:

    First, let me say that you are a saint and your father is lucky to have you. I am so sorry that both you and your dad are going through this. I was diagnosed on August 17, 2006 with my Stage IV Colon Cancer. I told my local Oncologist (I'm in Connecticut) that I was going to get a second and possibly a third opinion. He was fine with that. During the week of August 21st-25th, I traveled to Dana Farber in Boston and Yale-New Haven Hosptial for additonal opinions. All doctors agreed with my course of action
    (5-FU/Leucovorin/ Avastin/Oxaliplatin)so I stayed with my local Oncologist and am having treatment close to home. BUT, I have no idea as to why your dad's doctors would recommend AGAINST a second opinion.

    Have you thought about doing a check on the AMA website and research this doctor's (hospital) reputation (any disciplinary action, etc)? How much experience the doctor/hospital has had with stage iv cancer patients and statistics of those that have been treated? I can tell you that I researched all of that information prior to treatment and felt very comfortable with what I found. You could also check, if you would like or haven't already done so, www.cancer.gov site for trials that your dad may be eligible for. There is also another site, http://www.emergingmed.com/ with trial information.

    I would just feel very uncomfortable with a doctor not wanting a second opinion. And who knows, in the long run, the second opinion may be the same as the first.

    Forgive me if I am being forward, it's just that I feel so bad for you. I believe that I have been receiving the best care possible and it breaks my heart that you are going through this.

    I wish you and your dad the best. You are in my prayers. Good Luck and I agree, that the Lord will help you through this.

    Annie
  • AnnieM939
    AnnieM939 Member Posts: 38
    Douggie:

    Sorry, I did forget to mention that I had surgery for the tumor (sigmoid colon?) first. The surgery was August 31st and I didn't start chemo until October 2nd. The doctors did say that I had to heal from surgery first because the chemo could cause a peforation in the colon, bowels, etc.

    Again, God Bless and Best Wishes

    Annie
  • nanuk
    nanuk Member Posts: 1,358 Member
    You must be overwhelmed with the amount of information you are attempting to process..does the hospital have a social worker or patient advocate? Someone who can sort out some of the conflicting information you are receiving?
    There are just too many seemingly contradictory questions/answers. this is what a medical social worker does-often they can reach doctors, administrators, etc. easier than you can, and get some straight forward answers. You need someone who is right there, and can advocate for your father. bud
  • Douggie
    Douggie Member Posts: 29
    nanuk said:

    You must be overwhelmed with the amount of information you are attempting to process..does the hospital have a social worker or patient advocate? Someone who can sort out some of the conflicting information you are receiving?
    There are just too many seemingly contradictory questions/answers. this is what a medical social worker does-often they can reach doctors, administrators, etc. easier than you can, and get some straight forward answers. You need someone who is right there, and can advocate for your father. bud

    Thank you.
    Thing are seemingly getting better. Although I still have a lot of concern for my father. I spoke to him the other day and hes content with his doctor. They are planning to drain the fluid buildup this morning.

    I remember seeing an article about a new (I think it was a shot) that was developed in the UK. I was surfing and looking for something specific. I just glanced over it. But Im almost certain that it said something about a 77% survival. Would anyone happend to know what Im talking about?
  • AnnieM939
    AnnieM939 Member Posts: 38
    Douggie said:

    Thank you.
    Thing are seemingly getting better. Although I still have a lot of concern for my father. I spoke to him the other day and hes content with his doctor. They are planning to drain the fluid buildup this morning.

    I remember seeing an article about a new (I think it was a shot) that was developed in the UK. I was surfing and looking for something specific. I just glanced over it. But Im almost certain that it said something about a 77% survival. Would anyone happend to know what Im talking about?

    Hi Douggie

    I actually have an article "bookmarked" about colon cancer vaccines. Try this:

    http://www.sciencedaily.com/upi/index.php?feed=Science&article=UPI-1-20061117-17575700-bc-britain-cancervaccine.xml

    It was in Science Daily, I believe back in November. Happy to keep looking if this is not what you are looking for.

    I'm glad your dad seems happier and I hope that makes you more comfortable.

    I continue to pray for you and your dad.

    Annie
  • AnnieM939
    AnnieM939 Member Posts: 38
    Douggie said:

    Thank you.
    Thing are seemingly getting better. Although I still have a lot of concern for my father. I spoke to him the other day and hes content with his doctor. They are planning to drain the fluid buildup this morning.

    I remember seeing an article about a new (I think it was a shot) that was developed in the UK. I was surfing and looking for something specific. I just glanced over it. But Im almost certain that it said something about a 77% survival. Would anyone happend to know what Im talking about?

    I actually just found something that someone else had posted on this site (you people are the BEST). I hope you don't mind me re-posting your comment.

    Annie

    November 15, 2006, 4:31 AM CT

    Vaccine Against Colorectal Cancer


    British scientists have developed a vaccine that stimulates colorectal cancer patients' immune systems to fight malignant cells.

    In a clinical trial of 67 patients, scientists at the University of Nottingham found that when the vaccines were administered before and after surgery to remove malignant tumors, they helped stimulated immune cell production in up to 70 percent of patients. These results are reported in the November 15 issue of Clinical Cancer Research.

    "This is the first vaccine shown to stimulate TNF-alpha an immune-system protein that is very effective at killing cancer cells," said Lindy Durrant, senior author of the study and professor of cancer immunotherapy at the university.

    The vaccine works by stimulating the patients' immune response to generate infection-fighting white blood cells called T cells, which in turn produce immune system proteins called cytokines that destroy cancer cells. The antibody contained in the vaccine, called 105AD7, was cloned from a patient who survived seven years with liver metastases from colorectal cancer, Durrant explained.
  • Douggie
    Douggie Member Posts: 29
    AnnieM939 said:

    I actually just found something that someone else had posted on this site (you people are the BEST). I hope you don't mind me re-posting your comment.

    Annie

    November 15, 2006, 4:31 AM CT

    Vaccine Against Colorectal Cancer


    British scientists have developed a vaccine that stimulates colorectal cancer patients' immune systems to fight malignant cells.

    In a clinical trial of 67 patients, scientists at the University of Nottingham found that when the vaccines were administered before and after surgery to remove malignant tumors, they helped stimulated immune cell production in up to 70 percent of patients. These results are reported in the November 15 issue of Clinical Cancer Research.

    "This is the first vaccine shown to stimulate TNF-alpha an immune-system protein that is very effective at killing cancer cells," said Lindy Durrant, senior author of the study and professor of cancer immunotherapy at the university.

    The vaccine works by stimulating the patients' immune response to generate infection-fighting white blood cells called T cells, which in turn produce immune system proteins called cytokines that destroy cancer cells. The antibody contained in the vaccine, called 105AD7, was cloned from a patient who survived seven years with liver metastases from colorectal cancer, Durrant explained.

    thats the one annie.....thanks and good job!
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    Hi Douggie,

    first of all let me say I am appalled!! You are NOT paranoid at all!!

    I highly recomment the Mayo Clinic in Rochester, MN. I have years of experience there (I live in MN) and as my father says, Mayo runs like a Swiss Watch. It's true.

    I had my surgery there and go there for my follow-up. I love my oncologist and his background is research. He is very supportive of my choices and is a wonderful caring doctor. He even suggested that I meet with another oncologist for a second opinion. Eventually that was a moot point because I opted to not do any chemo and pursued Eastern Medicine for healing. But that's another story......

    I surely hope that your sibling can put her personal needs aside and realize this is about her father's life and not hers. How open is he to going to a world-renowned facility like the Mayo?

    A hospital is like any business. We should never fool ourselves into thinking otherwise. They want our dollars to survive. They provide us with a service but they are not a prison and cannot keep us, though they will try to convince you otherwise and apparently they are already trying with their fear tactics....."he will die if he leaves" kind of BS. None of us gets out of this life gig alive anyway. HE gets to make the choice where he will be treated--NOT the hospital.

    Be highly suspicious of any doctor who is not open to second opinions. RUN!

    I am also very surprised at the decision to start your father on chemo right away. Surgery depletes one's immune system and to dump toxic chemicals into an already compromised immune system seems dangerous. My Mayo Clinic surgeon told me to go home and heal before I was even to consult with my oncologist.

    Some things that you can do for your father right away:

    Diet changes. Colon cancer is 80% dietary related so it makes inteliigent sense to start there. Cancer cannot live in an alkaline environment so eating an alkalizing diet is key. An easy way to do this is to eat raw veggies and fruits, whole grains etc. Animal products, SUGAR, white flours and grains, alcohol are ALL acid producing. Cancer loves acid.

    The easiest way to get optimal nutrients into your bloodstream is by juicing organic fresh veggies.

    GREEN = LIFE

    Live enzymes are key to restoring health and healing disease. Raw veggies are FULL of live enzymes.

    I have not read all 34 other posts so I apologize if I have repeated anything anyone else has said.

    Best wishes to you and your family.

    peace, emily
  • Douggie
    Douggie Member Posts: 29
    2bhealed said:

    Hi Douggie,

    first of all let me say I am appalled!! You are NOT paranoid at all!!

    I highly recomment the Mayo Clinic in Rochester, MN. I have years of experience there (I live in MN) and as my father says, Mayo runs like a Swiss Watch. It's true.

    I had my surgery there and go there for my follow-up. I love my oncologist and his background is research. He is very supportive of my choices and is a wonderful caring doctor. He even suggested that I meet with another oncologist for a second opinion. Eventually that was a moot point because I opted to not do any chemo and pursued Eastern Medicine for healing. But that's another story......

    I surely hope that your sibling can put her personal needs aside and realize this is about her father's life and not hers. How open is he to going to a world-renowned facility like the Mayo?

    A hospital is like any business. We should never fool ourselves into thinking otherwise. They want our dollars to survive. They provide us with a service but they are not a prison and cannot keep us, though they will try to convince you otherwise and apparently they are already trying with their fear tactics....."he will die if he leaves" kind of BS. None of us gets out of this life gig alive anyway. HE gets to make the choice where he will be treated--NOT the hospital.

    Be highly suspicious of any doctor who is not open to second opinions. RUN!

    I am also very surprised at the decision to start your father on chemo right away. Surgery depletes one's immune system and to dump toxic chemicals into an already compromised immune system seems dangerous. My Mayo Clinic surgeon told me to go home and heal before I was even to consult with my oncologist.

    Some things that you can do for your father right away:

    Diet changes. Colon cancer is 80% dietary related so it makes inteliigent sense to start there. Cancer cannot live in an alkaline environment so eating an alkalizing diet is key. An easy way to do this is to eat raw veggies and fruits, whole grains etc. Animal products, SUGAR, white flours and grains, alcohol are ALL acid producing. Cancer loves acid.

    The easiest way to get optimal nutrients into your bloodstream is by juicing organic fresh veggies.

    GREEN = LIFE

    Live enzymes are key to restoring health and healing disease. Raw veggies are FULL of live enzymes.

    I have not read all 34 other posts so I apologize if I have repeated anything anyone else has said.

    Best wishes to you and your family.

    peace, emily

    Thank you, I talked with my father the other night and hes content with his current doctor. They never really said in detail what is going on with my father.
    Since his surgury. HE has not produced a bowel movement, hes still on a NG tube that is pulling bile from his stomach. The oncologist suggested that its the mets in his liver. They are making the protiens go haywire and making excess fluid buildup. But to be honest I dont think he even knows. The protiens are one thing, Then there are tumors that are pushing against the stomach to not let it digest. Im going to talk with my sister this afternoon. I wish there were a way to research the oncologist himself. It makes me wonder how many people hes pulled through this.
    My father went from good - pretty bad awfully fast.
    The plan of action was standard....remove the tumor in the colon...go home...heal up then chemo.
    My brothers flew in from out of town over christmas. One of them seems to think that the oncologist is a brainiac and just doesnt have social skills.
  • Douggie
    Douggie Member Posts: 29
    Well this is pretty far down the link. Im not certain anyone is reading it anymore. But I just have something to say. I hope its not too negative.

    I really have to wonder. Why they think they can lie to your face and not know the difference. The morning my father was going to start chemo. I questioned the doctor questioning if this was a good course of action to take. My father just had surugry 11 days prior. His explination was the reason his bowels arent working is because of:
    1) all the fluid build up because the tumor is making the protien in his body freak out and making him retain fluid.
    2) that there is a mass that is pushing against his stomach and not letting the fluids digest properly.
    I asked about doing a cat scan. He said I already have pictures (these were taken about a week prior to his surgury). So my father went through chemo. The regiment the doctor used is posted in a previous post in this link.
    Well were several days after the chemo and hes still not having bowel movements. So they did what they said they didnt need.....they did a CT scan and found out that his bowel collapsed at the previous surgery point. They are going to operate again tonight.
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    Jesus Douggie!
    That is just horrible. I can't believe it. I guess your father has been operated on by now. I hope he is doing well, but for God's sake. I am floored. Once he is healed up from this operation I would get him to a new doctor if I were you. I am not sure what else to say. If it were me I would not start on any chemo right now. Personally I would wait until your dad is all better and in the meanwhile get that SECOND or THIRD opinion on where to proceed from here.
    Please start a new thread and let us know how he is doing.
    Take care,
    Susan H.
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    Hi Douggie - I hope your father is doing better. I agree with Susan, start a new thread as this thread is pretty far down and I know I wouldn't think of going this far back. Hoping we'll hear from you. Monica