Consult with Dr. Lenz for stage IV resistent to Folfox and Folfiri +Avastin

califsue
califsue Member Posts: 80
edited March 2014 in Colorectal Cancer #1
Thanks again to everyone for your support on my post "PET/CT scans - devastating news". I'm still kind of in a fog from dealing with the news on Monday that my lung mets had progressed after 9 treatments of Folfiri + Avastin. Since I had already failed Folfox, my oncologist made it sound like a death sentence when he said, "I've got nothing more for you".

Dr. Lenz on the other hand has two trials that I might be a candidate for. One trial requires that a block of my tumor preserved from surgery be DNA tested for a specific gene. I started the process going on that. I will know in two weeks if my tumor has the gene. If so, I can enter the trial. The second trial, which looks better, has a waiting list of 15 people. He didn't make it sound as if he was very hopeful that I would get into that one. In either case, I learned that you can't enter a trial until you are 4 weeks clear of treatment. I had chemo last week, so I have 3 weeks to go. I expressed my concern that my disease may progress quite a bit in those four weeks since it had more than doubled in the last two months. He said that it is a risk.

If it turns out that I am not eligible for either trial at this time, then at the end of the 4 week waiting period he has recommended that I go on "backup chemo" which consists of Gemza (used for lung, bladder, pancreatic) + Zeloda + Avastin. Has anyone on this board heard of it, or been on it? I haven't googled it yet.

I asked him about the clinical trial at Johns Hopkins using the two Amgen drugs. He said that he couldn't comment on the efficacy, as he didn't know the data. He said that the two trials that he was offering to me looked promising. I also asked him about Dr. Stephen Cantrell and his levostatin + interferon treatment. He said that he was not very impressed with the use of interferon and that melanoma (Dr. Cantrell's cancer) was a whole different type of cancer than what we were dealing with.

I need to learn more about clinical trials very quickly. I will post some questions under another post. I have my MRI today for my spine to rule out a possible met at L1. Please send prayers my way.

Thank you all. In gratitiude,
Susan

Comments

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #2
    Hi Susan,you are in my
    Hi Susan,you are in my prayers for sure.I hope you can be qualified and join the clinical trial as soon as possible.There is always hope.Best luck to you with everything.Take care.
  • Paula G.
    Paula G. Member Posts: 596
    #3
    Thinking of you
    Sorry to hear about you not responding to the chemo. I hope you will get on one of the trails and it will start shrinking the tumors. I haven't heard of Gemza. You will have to keep us informed. Sending prayers your way. Good luck. Paula
  • dmdwins
    dmdwins Member Posts: 454 Member
    #4
    Paula G. said:

    Thinking of you
    Sorry to hear about you not responding to the chemo. I hope you will get on one of the trails and it will start shrinking the tumors. I haven't heard of Gemza. You will have to keep us informed. Sending prayers your way. Good luck. Paula

    GEMZA
    I have recently read about Gemza because a family member has probable pancreatic cancer(awaiting bx)It seems to have much better success than 5FU for the pancreas. Didn't happen to read about its use for colon but I hope it is successful for you and it is another option to try.

    I will keep you in my thoughts and prayers,
    Dawn
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #5
    thanks Susan
    Hi Susan,

    Thanks for sharing about what you learned and discussed at your visit with Dr. Lenz.
    I'm following what anyone mentions for future possibilities very carefully. I found out on Friday that my CEA has gone up even more now, to 14.7. 8 weeks ago it was 2.8; it went up to 12.2 in 4 wks and now up to 14.7 in another 4 wks. I'm quite worried as CEA has always been a good marker for me- it has never gone up before without a reason (cancer growing). I'm on Folfiri, so I'm seeking out other options too. So far as mentioning about Dr. Cantrell's lovastatin/interferon treatments to Dr. Lenz and he said his melanoma is differrent from what we're dealing with... well, that's true, but he does claim he has also had great success with colorectal cancer patients too. I'm still going to go forward with my consultation- I guess my thinking is if there's something other than a chemo that could help, that's what I want to try to see if it helps.

    I will most definitely pray for you to find answers and for your MRI to come out clean. Prayers will be for finding a treatment that will do the job this time- hopefully one of the clinical trials Lenz mentioned will work for you.

    Please keep us posted & blessings to you!

    Hugs,
    Lisa
  • califsue
    califsue Member Posts: 80
    #6
    lisa42 said:

    thanks Susan
    Hi Susan,

    Thanks for sharing about what you learned and discussed at your visit with Dr. Lenz.
    I'm following what anyone mentions for future possibilities very carefully. I found out on Friday that my CEA has gone up even more now, to 14.7. 8 weeks ago it was 2.8; it went up to 12.2 in 4 wks and now up to 14.7 in another 4 wks. I'm quite worried as CEA has always been a good marker for me- it has never gone up before without a reason (cancer growing). I'm on Folfiri, so I'm seeking out other options too. So far as mentioning about Dr. Cantrell's lovastatin/interferon treatments to Dr. Lenz and he said his melanoma is differrent from what we're dealing with... well, that's true, but he does claim he has also had great success with colorectal cancer patients too. I'm still going to go forward with my consultation- I guess my thinking is if there's something other than a chemo that could help, that's what I want to try to see if it helps.

    I will most definitely pray for you to find answers and for your MRI to come out clean. Prayers will be for finding a treatment that will do the job this time- hopefully one of the clinical trials Lenz mentioned will work for you.

    Please keep us posted & blessings to you!

    Hugs,
    Lisa

    colon ca patient being treated by Dr. Cantrell
    Hi Lisa,

    I'm sorry to hear that your CEA is rising. I hope that it is due to the chemo and does not represent disease progression.

    I called Dr. Cantrell's treatment center and the woman on the phone gave me the name and phone number of a patient that they are currently successfully treating. She said that he has offered to talk with any prospective patients about his treatments. PM me if you want his name and number.

    In hope,
    Susan
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #7
    califsue said:

    colon ca patient being treated by Dr. Cantrell
    Hi Lisa,

    I'm sorry to hear that your CEA is rising. I hope that it is due to the chemo and does not represent disease progression.

    I called Dr. Cantrell's treatment center and the woman on the phone gave me the name and phone number of a patient that they are currently successfully treating. She said that he has offered to talk with any prospective patients about his treatments. PM me if you want his name and number.

    In hope,
    Susan

    yes!
    Hi Susan,

    I would most definitely be interested in getting the name and number of this patient of Cantrell's you spoke of. I'm sending you a PM!

    Thanks in advance and hugs to you,
    Lisa

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