Clinical Trials?

marsella1
marsella1 Member Posts: 2
edited March 2014 in Liver Cancer #1
Does anyone have an opinion on clinical trials for cancer patients? My mom has stage 4 liver cancer and has tried different types of chemo that have unfortunately not helped. Her next option is to try experimental treatment. Has anyone been a part of clinical trials? Anything you can share that might help? Also, does anyone have any advise on alternative treatments??

Thank you.

Comments

  • slg
    slg Member Posts: 200
    #2
    Treatment
    Have you looked into Nexavar? Does your Mom have lesions on her liver? If so, there is a procedure called TACE (Transarterial chemoemolization). They cut off the blood supply to the tumors. Don't know if it worked yet But the labwork looks good so far.
  • 1survivor010
    1survivor010 Member Posts: 8
    #3
    Clinical Trials
    I was part of a world wide clinical trial for stage 1v colon cancer in July of 2007 to shrink tumors on my liver and colon. My tumors on the liver were on both lobes.I could not have surgery until they were below 2 cm{there were at the time multiple lesions with the largest two being 14 and 11-cm.I HAD 22 treatments of chemo on a trial drug called Pannatummamab[Bevaczumab with Folfox and Oxaliplatin]which by Sept had reduced the tumors enough for me to have a liver resection in October of 2008.I then had 28 days of chemo and radiation prior to having the primary tumor removed in May of 2009.
    My latest MRI came back clear and had I not been on the clinical trial{along with 900 people world wide ]the results might have been ? My point is when someone offers you a straw you take it and be positive from the get go.In my case i had nothing to lose and everything to gain.

    -Dave-
  • cmricker
    cmricker Member Posts: 7
    #4
    Clinical Trials
    Marsella,
    I have been on a few clinical trials and yes they have had good results. I was diagnosed with liver cancer in July 2007. I am still battling but with God's help and trying what trials the Dr. suggests I am living a pretty normal life. Yes, I agree with Dave to go with what is offered.
    Chris
  • slg
    slg Member Posts: 200
    #5
    cmricker said:

    Clinical Trials
    Marsella,
    I have been on a few clinical trials and yes they have had good results. I was diagnosed with liver cancer in July 2007. I am still battling but with God's help and trying what trials the Dr. suggests I am living a pretty normal life. Yes, I agree with Dave to go with what is offered.
    Chris

    CMricker/Clinical Trials
    Hi,
    Just wondering what type of drugs or procedures you might have been on with your cancer?

    slg
  • KJR
    KJR Member Posts: 1
    #6
    Clinical Trial
    My husband has Primary Liver cancer that has spread to his lung after a right liver lobe resection. He was going to try TACE but can't since it has spread. He just signed up for a trial that will consist of temsirolimus and sorafenib (Nexavar). The trial is being done at Mt. Zion/UCSF and Northwestern University in Chicago. He will begin next Wednesday and we hope it can keep the cancer from spreading further. So for now we think it is worth a shot, we are grateful that they are at least presenting some options.

    Sherri
  • slg
    slg Member Posts: 200
    #7
    KJR said:

    Clinical Trial
    My husband has Primary Liver cancer that has spread to his lung after a right liver lobe resection. He was going to try TACE but can't since it has spread. He just signed up for a trial that will consist of temsirolimus and sorafenib (Nexavar). The trial is being done at Mt. Zion/UCSF and Northwestern University in Chicago. He will begin next Wednesday and we hope it can keep the cancer from spreading further. So for now we think it is worth a shot, we are grateful that they are at least presenting some options.

    Sherri

    Nexavar
    Hi Sherri
    Sorry your husband can't get the TACE procedure but he should have good results on the Nexavar. My husband is on Nexavar since January 1st and had the TACE done on Jan 15th. the results have been very very good. His AFP #'s have been going down regularly every week. His care is coming from CPMC in SF. We have also heard good things about UCSF. Keep in touch and we can share information. I have a lot of good suggestions for the side effects of Nexavar. Best of luck.
    SLG slg72@aol.com
  • rowena32
    rowena32 Member Posts: 18
    #8
    slg said:

    Nexavar
    Hi Sherri
    Sorry your husband can't get the TACE procedure but he should have good results on the Nexavar. My husband is on Nexavar since January 1st and had the TACE done on Jan 15th. the results have been very very good. His AFP #'s have been going down regularly every week. His care is coming from CPMC in SF. We have also heard good things about UCSF. Keep in touch and we can share information. I have a lot of good suggestions for the side effects of Nexavar. Best of luck.
    SLG slg72@aol.com

    Nexavar
    I was wondering what your husband was on before he started Nexavar. I have cancer of the bile duct and was on gemzar and radiation. The treatments stopped in November and the scan showed it did not grow nor did it shrink. I have had blood tests and no treatments since then and my CA-19 test was going down until this month. I had a blood test last week and the count went from 1525 to 4074. I am changing doctors and have sent my blood test to Dr. Kelly at UCSF. I am waiting to hear from her which I hope is soon. Sig, what is AFP?
  • cmricker
    cmricker Member Posts: 7
    #9
    slg said:

    CMricker/Clinical Trials
    Hi,
    Just wondering what type of drugs or procedures you might have been on with your cancer?

    slg

    Clinical Trials
    Hi,
    I was on Nexavar to start then the trial was Brivanib, Tarceva and Avastin together, now Sutent. They are all oral except Avastin. In each one I had some good results. Most importantly I have been able to have a pretty normal life and am able to enjoy life.
    I hope this helps. Feel free to ask any other questions.
    Blessings, Chris
  • slg
    slg Member Posts: 200
    #10
    rowena32 said:

    Nexavar
    I was wondering what your husband was on before he started Nexavar. I have cancer of the bile duct and was on gemzar and radiation. The treatments stopped in November and the scan showed it did not grow nor did it shrink. I have had blood tests and no treatments since then and my CA-19 test was going down until this month. I had a blood test last week and the count went from 1525 to 4074. I am changing doctors and have sent my blood test to Dr. Kelly at UCSF. I am waiting to hear from her which I hope is soon. Sig, what is AFP?

    Rowena32
    AFP is Alph Feta Protein. That shows the tumor markers in your liver. My husbands are now down to 8.6 from 479. back in October 2009. the Nexavar is the only treatment he has been on along with a TACE procedure. That's a transarterial chemoembolization. Do you have tumors in your liver? If so, I would ask Dr. Kelly about this procedure. We are going to CPMC in SF.
    SLG
  • rowena32
    rowena32 Member Posts: 18
    #11
    slg said:

    Rowena32
    AFP is Alph Feta Protein. That shows the tumor markers in your liver. My husbands are now down to 8.6 from 479. back in October 2009. the Nexavar is the only treatment he has been on along with a TACE procedure. That's a transarterial chemoembolization. Do you have tumors in your liver? If so, I would ask Dr. Kelly about this procedure. We are going to CPMC in SF.
    SLG

    AFP
    Sig, as far as I know they have not done the AFP test but are keeping tabs on my cancer by the CA-19 and the CEA tests I have cholangiocarcinoma which is in the liver but in the bile duct. Is the TACE procedure like the cyberknife procedure? If so, it can not be done for me. Dr. Kelley mentioned a Phase I trial that is to start at UCSF but she was not sure if it was already full. From what I have heard Phase II and III trials are better than the Phase I. I am so glad that your husband's markers have dropped so much. I wish I could say the same but my markers keep going higher and higher. The CA-19 was up to 6700 two weeks ago. If it is not down this month, I will start chemo, again. The doctor has mentioned gemzar and carbo. Before, I was just on gemzar along with radiation. That seemed to stop the growth for awhile, but it looks like it is growing again, although it did not show it growing on the CT scan.
  • slg
    slg Member Posts: 200
    #12
    cmricker said:

    Clinical Trials
    Hi,
    I was on Nexavar to start then the trial was Brivanib, Tarceva and Avastin together, now Sutent. They are all oral except Avastin. In each one I had some good results. Most importantly I have been able to have a pretty normal life and am able to enjoy life.
    I hope this helps. Feel free to ask any other questions.
    Blessings, Chris

    cmricker/clincial trials/Nexavar
    Hi,
    Just wondering why you stopped Nexavar?
    SLG
  • slg
    slg Member Posts: 200
    #13
    rowena32 said:

    AFP
    Sig, as far as I know they have not done the AFP test but are keeping tabs on my cancer by the CA-19 and the CEA tests I have cholangiocarcinoma which is in the liver but in the bile duct. Is the TACE procedure like the cyberknife procedure? If so, it can not be done for me. Dr. Kelley mentioned a Phase I trial that is to start at UCSF but she was not sure if it was already full. From what I have heard Phase II and III trials are better than the Phase I. I am so glad that your husband's markers have dropped so much. I wish I could say the same but my markers keep going higher and higher. The CA-19 was up to 6700 two weeks ago. If it is not down this month, I will start chemo, again. The doctor has mentioned gemzar and carbo. Before, I was just on gemzar along with radiation. That seemed to stop the growth for awhile, but it looks like it is growing again, although it did not show it growing on the CT scan.

    AFP/rowena32
    Hi Rowena32,
    Don'tknow if your cancer isthe same as my husband's but between the Nexavar and the TACE procedure he is doing good. Is your cancer in your liver or coming from somewhere else? We are going to California Pacific in SF to the Liver clinic. Very good Dr. and staff. We are trying to get a support group going in this area for Nexavar patients.
    SLG
  • rowena32
    rowena32 Member Posts: 18
    #14
    slg said:

    AFP/rowena32
    Hi Rowena32,
    Don'tknow if your cancer isthe same as my husband's but between the Nexavar and the TACE procedure he is doing good. Is your cancer in your liver or coming from somewhere else? We are going to California Pacific in SF to the Liver clinic. Very good Dr. and staff. We are trying to get a support group going in this area for Nexavar patients.
    SLG

    Hi, Sig
    My cancer is in the liver and is called cholangiocarcinoma (cancer of the bile duct). So, I think it is different from your husband's. I asked about the cyberknife treatment at Stanford but I was not a candidate since it is in the bile duct and one side of my liver is blocked by a tumor(?). From what the CT scan has shown, it started in the liver and so far it doesn't seem to have spread to other organs. I have had gemzar and radiation for six weeks and that seemed to have stopped it from growing, but the last two months the CA-19-9 tests have risen so much, that the doctors think that is it growing but the CT scan has not shown the growing. It looks like I will be starting chemo, again, at the end of the month when I have the next blood test. The doctor wants to do another scan at that time. I have an appointment tomorrow with the doctor who will be doing the chemo and I will ask about the TACE procedure and the Nexavar. Thanks, for your information.
  • dvmendoza
    dvmendoza Member Posts: 12
    #15
    KJR said:

    Clinical Trial
    My husband has Primary Liver cancer that has spread to his lung after a right liver lobe resection. He was going to try TACE but can't since it has spread. He just signed up for a trial that will consist of temsirolimus and sorafenib (Nexavar). The trial is being done at Mt. Zion/UCSF and Northwestern University in Chicago. He will begin next Wednesday and we hope it can keep the cancer from spreading further. So for now we think it is worth a shot, we are grateful that they are at least presenting some options.

    Sherri

    Sherri, please contact me
    Hi Sherri. My husband is starting this trial too. Can you please email me at dvmendoza@sbcglobal.net
    I would like to know how your husband is doing. By the way, I spoke to another participant in this trial who seems to be doing well. Let's stay connected. Thanks,
    Dori

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