Update on my second clinical trial

peterhw
peterhw Member Posts: 69
edited March 2014 in Colorectal Cancer #1
After 5 weeks of treatment with Erbitux, Sorafenib and Irinotecan, today I went to hospital to have CT scan. The preliminary result shows "significant decrease" of the size of nodules in my lung and the lymph nodes in my chest area. Liver lesions have not changed much in size, but the "activities" are lower. It could mean the cancer cells are dying. There is no new lesion. All in all, it is a good report. My research onc will email me a final report when it is available. So tomorrow I am going to start the second cycle of treatments. I am a little bit surprised by the results, because I am KRAS mutant. I was not expecting Erbitux to work on me. But I guess the Sorafenib is doing its job.

Peter
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Comments

  • just4Brooks
    just4Brooks Member Posts: 980 Member
    #2
    GREAT NEWS!!
    Peter.... Great News. Keep up the good work my friend.


    Brooks
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #3
    Congratulations on your
    Congratulations on your good results; I am really happy for you! Thanks for letting us know.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #4
    fellow mutant
    Hello Peter from your "fellow mutant Lisa"!

    I'm so glad to hear you're having success with this clinical trial! Interesting about how they're having you take Erbitux along with the others even if you're kras mutated. Erbitux ruined my skin- I had such a horrible, horrible acne with it that I don't think I'd ever want to try it again. I'm interested in the Sorafenib though and will mention that to my doctor. I'm going to 3 different oncologists this week to see what they have to offer me. I just finished taking an offline treatment of interferon and lovastatin and did not have good results. So, now I'm on to find what to do next.
    Where are you doing this clinical trial? I'm in north San Diego, so I could go to San Diego, Orange County, or L.A. I don't remember where you live. Do you have any more info? Did you have to get genetic testing done to start this trial? If so, do you remember what the testing was?

    Well, I wish you well as you continue on, that the tumors will all shrink away and/or die off! That's what I'm looking for to have happen in me,too!

    Lisa
  • peterhw
    peterhw Member Posts: 69
    #5
    lisa42 said:

    fellow mutant
    Hello Peter from your "fellow mutant Lisa"!

    I'm so glad to hear you're having success with this clinical trial! Interesting about how they're having you take Erbitux along with the others even if you're kras mutated. Erbitux ruined my skin- I had such a horrible, horrible acne with it that I don't think I'd ever want to try it again. I'm interested in the Sorafenib though and will mention that to my doctor. I'm going to 3 different oncologists this week to see what they have to offer me. I just finished taking an offline treatment of interferon and lovastatin and did not have good results. So, now I'm on to find what to do next.
    Where are you doing this clinical trial? I'm in north San Diego, so I could go to San Diego, Orange County, or L.A. I don't remember where you live. Do you have any more info? Did you have to get genetic testing done to start this trial? If so, do you remember what the testing was?

    Well, I wish you well as you continue on, that the tumors will all shrink away and/or die off! That's what I'm looking for to have happen in me,too!

    Lisa

    Hi Lisa
    I live in northern VA and have my clinical trial at Johns Hopkins. The purpose of the trial is to find out if Sorafenib combine with Erbitux will make it more effective not just for KRAS WT but also for KRAS mutant. It is a new trial. Not many participants yet. My research onc think I am the first one to report posititve results. They are all very excited. There is another similar trial at NCI, but without Irinotecan. I don't have to get genetic test for the trial. I am sorry to hear that Dr. Cantrell's treatment does not work for you. There are so many clinical trial going on now for mCRC. I am sure you will find out that works for you.


    Peter
  • coloCan
    coloCan Member Posts: 1,944 Member
    #6
    peterhw said:

    Hi Lisa
    I live in northern VA and have my clinical trial at Johns Hopkins. The purpose of the trial is to find out if Sorafenib combine with Erbitux will make it more effective not just for KRAS WT but also for KRAS mutant. It is a new trial. Not many participants yet. My research onc think I am the first one to report posititve results. They are all very excited. There is another similar trial at NCI, but without Irinotecan. I don't have to get genetic test for the trial. I am sorry to hear that Dr. Cantrell's treatment does not work for you. There are so many clinical trial going on now for mCRC. I am sure you will find out that works for you.


    Peter

    Wishing you the best of results, Peter, with your current Tx
    Hoping for nothing but positive results for you.....Steve
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #7
    Very happy
    I am very happy that you are having great success with this treatment!
  • Patteee
    Patteee Member Posts: 945
    #8
    Great news Peter! So
    Great news Peter! So exciting to see some good results for KRAS mutant folks!
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #9
    Patteee said:

    Great news Peter! So
    Great news Peter! So exciting to see some good results for KRAS mutant folks!

    Good for you Peter....
    Your patience and perseverance is now starting to pay off for you...I am so glad that you are making a good headway with your treatments. Patience my friend, it serves you well......Love and Hope for you, Clift
  • grammadebbie
    grammadebbie Member Posts: 464
    #10
    Buzzard said:

    Good for you Peter....
    Your patience and perseverance is now starting to pay off for you...I am so glad that you are making a good headway with your treatments. Patience my friend, it serves you well......Love and Hope for you, Clift

    Awesome
    So happy for your good results. You are truly an inspiration and I admire your tenacity in fighting this monster and not giving in. I Pray things continue to kill all those cancer cells.

    Blessings to you,

    Debbie (gramma)
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #11
    Congratulations!Actually,I
    Congratulations!Actually,I checked your blog yesterday,I didn't see any update,I was wondering what was going on.I am so happy to see your update today here.I hope this clinical trial will take care of all the cancer nodules and bring you to a cure.Best luck to you with everything.Take care.
  • Nana b
    Nana b Member Posts: 3,030 Member
    #12
    Fight for my love said:

    Congratulations!Actually,I
    Congratulations!Actually,I checked your blog yesterday,I didn't see any update,I was wondering what was going on.I am so happy to see your update today here.I hope this clinical trial will take care of all the cancer nodules and bring you to a cure.Best luck to you with everything.Take care.

    Great News!
    I hope this continues on this path for you.....exciting!
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #13
    Great!
    Peter, that's great! I'm so glad you're getting such good results.

    *hugs*
    Gail
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #14
    Peter
    Peter,
    That is good news. I am so glad that things are moving in the right direction. Thank you for sharing with us.

    Aloha,
    Kathleen
  • ginsec
    ginsec Member Posts: 1
    #15
    Question
    Hello peterhw

    I am very glad that you have such a good response
    My father is exactly at the same situation with lung mets from november of 2008
    but the problem is that we live at Greece (very far away) and here we don't have hospitals participating at clinical trials neither access to the latest drugs.
    Also we don't have the financial status to move to USA.
    So i would like to ask you if can ask your oncologist if they see such good results (as yours) also with other patients who have exchausted the standard protocols.
    If they see that sorafenib is working with erbitux in kras mutant colorectal cancer patients then our oncologist here in Greece could try this to my father.
    I don't want to loose him and i am trying to learn whatever that may give him extra life.

    Thank you very much
  • peterhw
    peterhw Member Posts: 69
    #16
    ginsec said:

    Question
    Hello peterhw

    I am very glad that you have such a good response
    My father is exactly at the same situation with lung mets from november of 2008
    but the problem is that we live at Greece (very far away) and here we don't have hospitals participating at clinical trials neither access to the latest drugs.
    Also we don't have the financial status to move to USA.
    So i would like to ask you if can ask your oncologist if they see such good results (as yours) also with other patients who have exchausted the standard protocols.
    If they see that sorafenib is working with erbitux in kras mutant colorectal cancer patients then our oncologist here in Greece could try this to my father.
    I don't want to loose him and i am trying to learn whatever that may give him extra life.

    Thank you very much

    Answer

    Hi Ginsec,

    There are several trials that invloved Sorafenib and Erbitux or Irinotecan. Because these are ongoing trials, there are not many data available yet. But on theory it looks very promising. Here are some info that you can talk to you oncologist. From what I know, the pre-clinical data was very good, that's why they proceed to the phase I/II trial.

    The trial that I am with right now, http://clinicaltrials.gov/ct2/show/NCT00134069
    This on does not have Irinotecan, http://www.cancer.gov/clinicaltrials/NCI-06-C-0164
    This trial is in France, http://www.clinicaltrials.gov/ct2/show/NCT00989469

    Hope these info is usefull for you.


    Peter
  • peterhw
    peterhw Member Posts: 69
    #17
    Thank you all
    Thank you all for the encouragement. I have just started the 2nd cycle of treatment. So far so good. No severe side effect yet. Before this trial, I was having severe liver pain. My liver was swollen and press against the rib cage. I am very happy to report that after 5 treatments, the pain is gone completely. It is another sign that the treatment is working. I will keep on fighting and will let you guy know if there is any new development.


    Peter
  • peterhw
    peterhw Member Posts: 69
    #18
    Fight for my love said:

    Congratulations!Actually,I
    Congratulations!Actually,I checked your blog yesterday,I didn't see any update,I was wondering what was going on.I am so happy to see your update today here.I hope this clinical trial will take care of all the cancer nodules and bring you to a cure.Best luck to you with everything.Take care.

    Happy Chinese New Year
    Isn't it amazing. I got the good news right after the Chinese New Year. What they said "A new year, a new fortune" is true. I wish everybody has godd fortune in the year of tiger.


    Peter
  • Brenda3.16
    Brenda3.16 Member Posts: 209
    #19
    peterhw said:

    Thank you all
    Thank you all for the encouragement. I have just started the 2nd cycle of treatment. So far so good. No severe side effect yet. Before this trial, I was having severe liver pain. My liver was swollen and press against the rib cage. I am very happy to report that after 5 treatments, the pain is gone completely. It is another sign that the treatment is working. I will keep on fighting and will let you guy know if there is any new development.


    Peter

    John,
    I am really happy to
    John,

    I am really happy to hear your good news. I also have mets to the liver and lungs, and kras mutation. I will be very interested to follow your progress.

    Is your oncologist at John Hopkins ?

    I live in Pennsylvania and have been looking for a different oncologist at a big facility. John Hopkins is one I have been thinking about.

    Brenda
  • peterhw
    peterhw Member Posts: 69
    #20
    Brenda3.16 said:

    John,
    I am really happy to
    John,

    I am really happy to hear your good news. I also have mets to the liver and lungs, and kras mutation. I will be very interested to follow your progress.

    Is your oncologist at John Hopkins ?

    I live in Pennsylvania and have been looking for a different oncologist at a big facility. John Hopkins is one I have been thinking about.

    Brenda

    Hi Brenda
    Yes my oncologist is at Johns Hopkins. My onc is the one responsible for all the clinical trials at Hopkins. She used to work at NCI. Hopkins recruit her to manage the clinical trial. If you are not too far from Baltimore, I wiil highly recommend Hopkins. Maybe you can set up an appointment for 2nd opinion. Each Dr. only work on one specific cancer. My onc only work on CRC, some other group take care of breast or lung. so when you make appointment, they will be verey specific about what kind of cancer you have.


    Peter
  • clier
    clier Member Posts: 29
    #21
    peterhw said:

    Hi Lisa
    I live in northern VA and have my clinical trial at Johns Hopkins. The purpose of the trial is to find out if Sorafenib combine with Erbitux will make it more effective not just for KRAS WT but also for KRAS mutant. It is a new trial. Not many participants yet. My research onc think I am the first one to report posititve results. They are all very excited. There is another similar trial at NCI, but without Irinotecan. I don't have to get genetic test for the trial. I am sorry to hear that Dr. Cantrell's treatment does not work for you. There are so many clinical trial going on now for mCRC. I am sure you will find out that works for you.


    Peter

    your trial
    Any idea if this trial is closed? I just left a msg w/ their scheduling dept & hope to hear back tomorrow. I'm in my second 6 month cycle for Stage IV Colon, mets to liver and most recently to lungs. Did surgery to remove primary, then 6 months FolFox, then 2 courses of Radiospheres & now am finishing treatment #4 of a 6 month cycle of Folfuri. Onc is suggesting experimental/trial treatments and I am very encouraged to hear about yours. Hoping it's still open, at JH or somewhere!

    Best to you

    Chris

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