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Clinical Trials?

cyndi2324
cyndi2324 Member Posts: 72
edited March 2014 in Colorectal Cancer #1
I was just told my PET scan shows 3 new mets. I have a mutated KRAS and have had Folfox 4, Xeloda, and Irinotecan. These and the 2 surgeries have not kept it from coming back. So my Dr.has set up an appointment mon. for me to meet Dr.A Patnaik at the Start center in San Antonio regarding treating me on study. I think that means clinical trials. Has anyone had experience or knowledge about taking this path? I'm scared I have run out of options.
I am at stage IV.
Thank You,
Cyndi2324
«1

Comments

  • lisa42
    lisa42 Member Posts: 3,625
    info
    Hi,

    It sounds like we're almost in the same situation. I've done Folfox once and Folfiri twice, and my lung mets just do not want to shrink or go away. In addition to where you're going, also check out www.neoplas.org about Dr. Stephen Cantrell's clinic in Nashville.
    It is an "off label" treatment, but really sounds very promising. I have an appt. set up to go there the first week of December. There is also a youtube video of "Dr. Stephen Cantrell and Neoplas Innovations"- check it out- he was interviewed by the Fox network just a couple of weeks ago. It's very impressive.

    Best wishes to you-
    Lisa
  • tammy41
    tammy41 Member Posts: 48
    hi cyndi im also stage 4
    hi cyndi im also stage 4 found out march of 2007 mets to liver had the colon and liver resection same year. then on folfox and avastin then on to cpt11and erbatux but 6 months ago ct scan showed spots back in the liver and 2 in the lung. my first thought was o my god i am done what more can i do ...but they had me wait 6 weeks and i started in a study it has been 4 months first ct showed stable didnt get smaller but good news is it didnt grow.had a ct scan on mon i will get the results next mon. but best of all i feel wonderful my only side effects are a small rash on my face and chest and head and shoulders shampoo takes care of that.please try not to be scared(easy for me to say)because im sure the dr will come up with a good plan for you take care tammy
  • cyndi2324
    cyndi2324 Member Posts: 72
    tammy41 said:

    hi cyndi im also stage 4
    hi cyndi im also stage 4 found out march of 2007 mets to liver had the colon and liver resection same year. then on folfox and avastin then on to cpt11and erbatux but 6 months ago ct scan showed spots back in the liver and 2 in the lung. my first thought was o my god i am done what more can i do ...but they had me wait 6 weeks and i started in a study it has been 4 months first ct showed stable didnt get smaller but good news is it didnt grow.had a ct scan on mon i will get the results next mon. but best of all i feel wonderful my only side effects are a small rash on my face and chest and head and shoulders shampoo takes care of that.please try not to be scared(easy for me to say)because im sure the dr will come up with a good plan for you take care tammy

    Clinical Trials?
    Tammy I wish all the best for the results of you CT on mon.
    Thank you for your info.
    Cyndi2324
  • cyndi2324
    cyndi2324 Member Posts: 72
    lisa42 said:

    info
    Hi,

    It sounds like we're almost in the same situation. I've done Folfox once and Folfiri twice, and my lung mets just do not want to shrink or go away. In addition to where you're going, also check out www.neoplas.org about Dr. Stephen Cantrell's clinic in Nashville.
    It is an "off label" treatment, but really sounds very promising. I have an appt. set up to go there the first week of December. There is also a youtube video of "Dr. Stephen Cantrell and Neoplas Innovations"- check it out- he was interviewed by the Fox network just a couple of weeks ago. It's very impressive.

    Best wishes to you-
    Lisa

    Clinical Trials?
    Lisa Thank You. I looked up his site and watched you tube interview. Please keep us posted on how well this goes for you, and I hope it does. I don't understand why more isn't know about this if it is so successful? I wonder what his rate of cure is. Gosh I hope this works for you because that would be great for you and maybe show it can help some of us. Do you have the mutated kras gene? It sounds like you might if traditional chemo didn't work for you.
    The VERY BEST OF LUCK TO YOU
    cyndi2324
  • peterhw
    peterhw Member Posts: 69
    Hi Cyndi
    I started clinical trial at Johns Hopkins two weeks ago, after 12 Folfox and 12 Folfiri. I also have KRAS mutation, so Erbitux is not for me. My onc actually encouraged me to seek clinical trial, even though I have not run out of chemo options yet. There are lots of clinical trials available, some of them are very promising. I am sure your doctor will find a good one for you.

    Peter
  • cyndi2324
    cyndi2324 Member Posts: 72
    peterhw said:

    Hi Cyndi
    I started clinical trial at Johns Hopkins two weeks ago, after 12 Folfox and 12 Folfiri. I also have KRAS mutation, so Erbitux is not for me. My onc actually encouraged me to seek clinical trial, even though I have not run out of chemo options yet. There are lots of clinical trials available, some of them are very promising. I am sure your doctor will find a good one for you.

    Peter

    Thanks
    Thanks Peter
    John Hopkins is certainly well know so I hope they can help you. While you are helping them and us find a cure.

    Cyndi
  • sfmarie
    sfmarie Member Posts: 602
    Cyndi
    I think clinical trials are options, so you do have that. I am keeping you in my prayers. Let us know how it goes. My sister is also stage iv. She is 39 with mets to her liver and peritoneum. Marie
  • lisa42
    lisa42 Member Posts: 3,625
    cyndi2324 said:

    Clinical Trials?
    Lisa Thank You. I looked up his site and watched you tube interview. Please keep us posted on how well this goes for you, and I hope it does. I don't understand why more isn't know about this if it is so successful? I wonder what his rate of cure is. Gosh I hope this works for you because that would be great for you and maybe show it can help some of us. Do you have the mutated kras gene? It sounds like you might if traditional chemo didn't work for you.
    The VERY BEST OF LUCK TO YOU
    cyndi2324

    yes, I'm a "mutant"- lol!
    Hi Cyndi,

    Yes, I do have the k-ras mutation. I would also like to find out more about Dr. Cantrell's cure rate. I spoke w/ a woman on the phone yesterday a.m., but I'm going to email today and ask a few more questions. So far as why more isn't known about this treatment if "it's so successful", is probably because a clinical trial on it was never completed. "Regular" doctors are very hesitant about using something that hasn't had a clinical trial done on it. Actually, I am too, but I just feel something about this. I'm still willing to spend the inital consultation fee ($960 plus my airfare there) to find out.

    Best wishes to you in your search for a clinical trial. Please do let us know how it goes and if you're put on in a clinical trial, then definitely let us know what it is.

    Take care-
    Lisa
  • lisa42
    lisa42 Member Posts: 3,625
    peterhw said:

    Hi Cyndi
    I started clinical trial at Johns Hopkins two weeks ago, after 12 Folfox and 12 Folfiri. I also have KRAS mutation, so Erbitux is not for me. My onc actually encouraged me to seek clinical trial, even though I have not run out of chemo options yet. There are lots of clinical trials available, some of them are very promising. I am sure your doctor will find a good one for you.

    Peter

    Tammy and Peter
    Hi Tammy and Peter,

    What clinical trials are you in? What is it that you are being given? Please share more info- thanks!

    Lisa
  • cyndi2324
    cyndi2324 Member Posts: 72
    lisa42 said:

    Tammy and Peter
    Hi Tammy and Peter,

    What clinical trials are you in? What is it that you are being given? Please share more info- thanks!

    Lisa

    Clinical Trials?
    Lisa Did you get my reply? it is not showing up on my site.
    Cyndi 2323
  • cyndi2324
    cyndi2324 Member Posts: 72
    lisa42 said:

    yes, I'm a "mutant"- lol!
    Hi Cyndi,

    Yes, I do have the k-ras mutation. I would also like to find out more about Dr. Cantrell's cure rate. I spoke w/ a woman on the phone yesterday a.m., but I'm going to email today and ask a few more questions. So far as why more isn't known about this treatment if "it's so successful", is probably because a clinical trial on it was never completed. "Regular" doctors are very hesitant about using something that hasn't had a clinical trial done on it. Actually, I am too, but I just feel something about this. I'm still willing to spend the inital consultation fee ($960 plus my airfare there) to find out.

    Best wishes to you in your search for a clinical trial. Please do let us know how it goes and if you're put on in a clinical trial, then definitely let us know what it is.

    Take care-
    Lisa

    TRIALS
    I'll try again t get this to you.Here is where I'm going this mon. http://www.startthecure.com/
    They are also doing trials connected to MD Anderson and probably others. Dr. Amita Patnaik she is HIGHLY RECOMENDED. I can tell you that a friend of mine had cancer a few years ago and she was with this Dr. when she was with CRTC anyway my friend is cancer free. She said she was an angel. I don't know what I will get yet as they will need to find the best fit for me. As you know clinical trials are free. They work as a team with you and you needs. There are cheap Southwest Airline flights to San Antonio. If you want I will have more information after I meet her Mon. my email is [email protected] if you want to email me so I can email you back. I will try and post tues on this site but I have found it is not always reliable.
    I am getting more excited as it gets nearer. Oh and my daughter inlaw Jane just found out she has a friend that is a clinical nurse there and she said she wouldn't work anywhere else the people are kind, and all about the patients care and results with good life quality.
    Hope this message makes it. I type with 2 fingers and I'm tired. HA! saved it this time and am posting to a different comment bye maybe this one will work this 3rd
    Bye Lisa,
    Cyndi
  • lisa42
    lisa42 Member Posts: 3,625
    cyndi2324 said:

    Clinical Trials?
    Lisa Did you get my reply? it is not showing up on my site.
    Cyndi 2323

    Cyndi- no I didn't
    Hi Cyndi,

    I didn't get it- can you try sending a PM instead? Let me know if you don't know how to do that.

    Thanks,
    Lisa
  • John23
    John23 Member Posts: 2,122
    Clinical trials?

    I hope everyone understands that when you sign into a clinical trial,
    you -do not- know if they are giving you something that might cure
    you, or if they are giving you a placebo.

    Understand: They do not tell you what group you will be in.

    I was a 3c/4 colon cancer victim 3+ years ago. If I get worse,
    I will try other options, but I wouldn't want to give a year of my
    time, only to find out they were giving me protein and water to
    see how I compare with the one getting "the cure".

    Life's short, and there other options aside from the blind trials.

    Listen, cancer scares us all. It's difficult to think straight when you're
    so afraid of dying, but we should really try to take time out to think.

    We should take time to research other options that many others
    are finding success with.

    Shake the fear!
  • peterhw
    peterhw Member Posts: 69
    lisa42 said:

    Tammy and Peter
    Hi Tammy and Peter,

    What clinical trials are you in? What is it that you are being given? Please share more info- thanks!

    Lisa

    Hi Lisa
    My trial is a phase 1b/2 open label study of AMG655 and AMG479. Both drugs are made by Amgen. AMG655 is an antibody that binds to the death receptor of cancel cell and induces apoptosis (cell self destruction) in cancer cell. AMG479 is an inhibitor target IGF (insulin-like growth factor) receptor. It is supposed to disable the growth of cancer cell. Because it is an open label study, so I and the doctor know which drug and how much I am getting. The phase 1 results look very good.

    Peter
  • pf78248
    pf78248 Member Posts: 209
    clinical trials not always blind
    Cyndi,
    So sorry about your cancer. My husband David was diagnosed stage 3C in 2008 earlier this year found out his cancer had metastisized to his liver. He also goes to an oncologist in the START group but not the same one you are going to see.

    Since his cancer was aggressive, he was put in a study, or clinical trial, for his adjuvant chemo treatment. It was NOT BLIND. Many medical tials are blind, but I don't think that's ever true for cancer patients. He knew exactly what he was getting. And it's not true that clinical trials are free. Only the part of the drug that is in the trial is free. In my husband's case it was Erbitux, but insurance still was billed for the FOLFOX and all the other related treatment drugs. There was very little risk to David as he could opt out of the trial at any time. It was later discovered that Erbitux doesn't work for those with KRAS mutations, which he had, so it was discontinued.

    My advice is don't be afraid of a trial. They are carefully monitored and you would more than likely have an extra RN to track your progress with each visit. I am a definite proponent of agressive treatments, especially if you are stage 4.

    It sounds like you live near or in San Antonio. The doctors who are connected to START are excellent. Also, have you considered M D Anderson? My husband is currently
    getting prepared for liver resection there. We have found MDA THE PLACE TO BE if you need more than just a great oncologist. Their team approach is amazing.

    Good luck in your journey and I truly wish you the very best. This board is really great and the support here is terrific.
    Hugs,
    Priscilla
  • John23
    John23 Member Posts: 2,122
    Clinical Trials
    I really didn't want to scare the poster, or anyone that's considering
    to take part in a "clinical trial", however.......

    To do the testing according to set standards, there needs to be set
    control groups of those taking the med being tested, and of those
    not taking the med being tested.

    The entire testing is preformed "blind". I.E.: the patients do not
    know what they are being given. That requirement is there to
    remove the psychological aspects of the test. Patients can be
    influenced by the thought of taking, or not taking a new med,
    and not revealing the fact to the patient helps defines the reactions,
    if any.

    Most often, the patients accepted for trials have little, or nothing
    to lose...... Well..... according to the medical prognosis....

    The tests are usually offered to those who are no longer being
    prescribed any medication, or whose medication is no longer
    providing improvement.

    In either/any case, control groups are required.

    I would strongly suggest some reading is done regarding "clinical tests",
    and exactly how they work. Any test that does not use "control groups"
    and "blind testing" are usually not considered valid to medical standards.

    If there are exceptions to that type of "clinical testing", I would
    appreciate a link to the data.

    For some insight into the testing procedures, and why "end-term"
    patients are usually used, read at the link that follows, and try to
    understand exactly what is being said:
    Clinical testing and placebo


    There are plenty of other, safer options.

    There is no reason to panic. You can beat cancer; you can beat the odds.
  • cyndi2324
    cyndi2324 Member Posts: 72
    lisa42 said:

    Cyndi- no I didn't
    Hi Cyndi,

    I didn't get it- can you try sending a PM instead? Let me know if you don't know how to do that.

    Thanks,
    Lisa

    Clinical Trials?
    Lisa,
    I do not know how to send a PM. I did try to send info to you 3 times yesterday.
    Cyndi 2324
  • cyndi2324
    cyndi2324 Member Posts: 72
    pf78248 said:

    clinical trials not always blind
    Cyndi,
    So sorry about your cancer. My husband David was diagnosed stage 3C in 2008 earlier this year found out his cancer had metastisized to his liver. He also goes to an oncologist in the START group but not the same one you are going to see.

    Since his cancer was aggressive, he was put in a study, or clinical trial, for his adjuvant chemo treatment. It was NOT BLIND. Many medical tials are blind, but I don't think that's ever true for cancer patients. He knew exactly what he was getting. And it's not true that clinical trials are free. Only the part of the drug that is in the trial is free. In my husband's case it was Erbitux, but insurance still was billed for the FOLFOX and all the other related treatment drugs. There was very little risk to David as he could opt out of the trial at any time. It was later discovered that Erbitux doesn't work for those with KRAS mutations, which he had, so it was discontinued.

    My advice is don't be afraid of a trial. They are carefully monitored and you would more than likely have an extra RN to track your progress with each visit. I am a definite proponent of agressive treatments, especially if you are stage 4.

    It sounds like you live near or in San Antonio. The doctors who are connected to START are excellent. Also, have you considered M D Anderson? My husband is currently
    getting prepared for liver resection there. We have found MDA THE PLACE TO BE if you need more than just a great oncologist. Their team approach is amazing.

    Good luck in your journey and I truly wish you the very best. This board is really great and the support here is terrific.
    Hugs,
    Priscilla

    Blind or not Blind?
    Priscilla,
    Thanks for getting back to the topic. I know MD Anderson is a good place and they are doing some good stuff especially with surgery on cancer. However one of my new mets is at l2 of my sacrum and since I almost died the last time they did surgery in that area I almost died my doctor and surgeon told me it is inoperable. My oncologist also told me That I would not get a placebo drug at START CENTER when I ask her. But I will ask again at my Mon. meeting with Dr. Amita Patnaik. I was also told that some of the clinical trials at Start are also being done at MD Anderson. I also wish you luck in your journey and hope all goes well. You are right about this being a great board, I wish I had joined the 1st year I was in chemo and had surgery. I think I was pretty naive then. Not so much now.
    Hugs back at you,
    Cyndi
  • peterhw
    peterhw Member Posts: 69
    John23 said:

    Clinical Trials
    I really didn't want to scare the poster, or anyone that's considering
    to take part in a "clinical trial", however.......

    To do the testing according to set standards, there needs to be set
    control groups of those taking the med being tested, and of those
    not taking the med being tested.

    The entire testing is preformed "blind". I.E.: the patients do not
    know what they are being given. That requirement is there to
    remove the psychological aspects of the test. Patients can be
    influenced by the thought of taking, or not taking a new med,
    and not revealing the fact to the patient helps defines the reactions,
    if any.

    Most often, the patients accepted for trials have little, or nothing
    to lose...... Well..... according to the medical prognosis....

    The tests are usually offered to those who are no longer being
    prescribed any medication, or whose medication is no longer
    providing improvement.

    In either/any case, control groups are required.

    I would strongly suggest some reading is done regarding "clinical tests",
    and exactly how they work. Any test that does not use "control groups"
    and "blind testing" are usually not considered valid to medical standards.

    If there are exceptions to that type of "clinical testing", I would
    appreciate a link to the data.

    For some insight into the testing procedures, and why "end-term"
    patients are usually used, read at the link that follows, and try to
    understand exactly what is being said:
    Clinical testing and placebo


    There are plenty of other, safer options.

    There is no reason to panic. You can beat cancer; you can beat the odds.

    Not all clinical trials are the same
    The clinical trial I enter is not "blind", nor "placebo controlled". It is an "Interventional, Treatment, Non-Randomized, Open Label, Parallel Assignment, Safety/Efficacy Study". Here is the link http://clinicaltrials.gov/ct2/show/NCT00819169

    When I talked to the doctors that do the research, they are very clear about which group I will be in. It is an "Open Label" trial, so we all know what drugs and how much we are getting. If it is a "double blind" or "placebo controlled" study, they need to let the patients know before they sign the consent form.

    Peter
  • califsue
    califsue Member Posts: 80
    lisa42 said:

    info
    Hi,

    It sounds like we're almost in the same situation. I've done Folfox once and Folfiri twice, and my lung mets just do not want to shrink or go away. In addition to where you're going, also check out www.neoplas.org about Dr. Stephen Cantrell's clinic in Nashville.
    It is an "off label" treatment, but really sounds very promising. I have an appt. set up to go there the first week of December. There is also a youtube video of "Dr. Stephen Cantrell and Neoplas Innovations"- check it out- he was interviewed by the Fox network just a couple of weeks ago. It's very impressive.

    Best wishes to you-
    Lisa

    I'm in the same boat
    Hi Cyndi and Lisa,

    Sounds like I'm in the same boat - KRAS mutantion and all. Hopefully we're all sailing towards a successful treatment outside of Folfox or Folfiri. Even though Dr. Lenz has offered me two clinical trials, I'm not sure if they are the "best" trials out there for me right now. How do you figure that out?

    As I wrote in another post, Dr. Lenz was not very impressed with Dr. Stephen Cantrell's work. I called the Neoplas Innovations number and talked for a long time to a gal. She gave me the name and phone number of a colon cancer patient that is on the treatments and has benefited from them. If you want to PM me, I will give you his information.

    Best wishes to us all,
    Susan