Any hot cliinical trials you are aware of?

kuastoi
kuastoi Member Posts: 63
edited March 2014 in Colorectal Cancer #1
I am likely heading to a clinical trial soon - rising cea, enlarging neck nodes, scans pending.

have already been through:

FOLFOX/avastin - stopped the oxi due to neuropathy
Folfiri/avastin - stopped aVstin due to bowel perforation

now on FOLFIRI/erbitux with good initial results (CEA 12 down to 5) but now climbing despite treatment.



Any thoughts, knowledge and experience welcomed....

Tom

Comments

  • tlo
    tlo Member Posts: 6
    #2
    I am posting this for my
    I am posting this for my husband,Tony. Do you know what your k ras mutation is? You can click on the user name to read his story, but his k ras is mutated and the erbitux doesn't work on that. He just started clinicals last week. His feet are still numb from the oxi and now the clinical is making his hands numb. He is a guitar player for a living and this is unfortunate, but he refuses to give up on his playing. We are at Sarah Cannon in Nashville and the clinical he is on involves many types of cancer patients whose tumors have been resistant to treatment. They are doing a number of genetic tests on the tumor to give a better idea of what treatments have a shot of working. It is always scary to head to clinical trials because you feel like a lab rat, but this is cutting edge research and might have an answer for us and you. Best wishes!!
  • chicoturner
    chicoturner Member Posts: 282
    #3
    Hi Tom. I am involved with
    Hi Tom. I am involved with UCSF clinical trials. I don't have any names as the last one I was on was still just a number. What I think you will find, if you are a stage 4, is that you will be eligible foe Phase 1 trials. It seems to me that many of the new trials are combinations of drugs we have already used or were effective on other cancers and now they are trying them with other drugs. Where do you live? I know that many of the UC hospitals do trials. Currently I am on a holding pattern waiting to see if I have a mutated C-RAF gene which is what they are looking for for a new trial. I too am K-RAS mutated and could not take some of the newer drugs.. Make sure your Docs know you want to do trials so they can send you to where you can get involved. It certainly is a different world. Best to you. I hope you will stay in touch. Jean
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #4
    look into gemcitabine and xeloda
    Hi Tom,

    About a year ago I was looking into clinical trials and didn't find any that worked for me. I saw Dr. Lenz at USC and he recommended that I start on gemcitabine (Gemzar) and capecitabine (Xeloda), based on a clinical trial out of USC in 2005. Someone else sent me a PM today asking about it. For whatever reason, the clinical trial never published its results, but they were pretty good and Dr. Lenz recommended it based on the results (he oversaw the clinical trial of it).
    So, in March 2010, I started on Gemzar, Xeloda, and my onc also added in Avastin.
    I will try to get a copy of my chemo orders so that I can see what my actual dosage is. Gemzar is FDA approved for pancreatic cancer, not colorectal. It was a fight at first with my insurance, as they didn't want to pay for it. After two rejections, my husband and I decided to pay cash while we fought. We forked out close to $7,000 before I made headway with the insurance by applying/pleading to the State Dept. of Managed Care in California. I thought it would be a long drawn out process, but I got a phone call from my insurance (Health Net) about 2 wks after I sent it. They told me they received a faxed copy from the Dept of Managed Care of what I sent them & they'd like to inform me that they are reversing their decision and will be covering the Gemzar for me, including reimbursing me for what I had already paid out of pocket. That tells you to never give up, because I thought there was no way they were going to give in!

    Somewhere in all my medical file stuff, I have a copy of what Dr. Lenz put out on the results of the clinical trial. I will try to dig it out. It wasn't a very good copy and was actually hard to read, single spaced, but it was the results.

    I've now been on it for 10 months. About 4 months ago, I had my Gemzar dose reduced because my platelets were crashing pretty low (that is the main side effect of Gemzar is that it causes the platelets to drop a lot). The first few months, my tumors showed slight shrinkage and nothing new has grown in me while on this treatment in 10 months. Actually, my last scan was Nov. 4th, so my info goes up until that point. My CEA has been rising quite a bit lately, however, I am thinking this may be from the reduced Gemzar dose.
    Just this past week, my oncologist decided to change me from Xeloda to the 5FU pump. This was mainly due to hand/foot side effects from Xeloda, but there is also another reason for doing this... With Gemzar and Xeloda, I have been on a 3 week cycle- 2 weeks in a row of getting Gemzar/Avastin once a week and taking Xeloda those same 2 wks, then 1 week off, then start over. Changing to the 5FU pump/leucovorin instead of Xeloda is changing me to an every other week cycle. Since I won't ever go 2 wks in a row of getting the Gemzar anymore, my onc is upping my Gemzar dose again to what I was getting when I first started it. I am hoping this will help turn around my rising CEA! I'm due for another scan in Feb., so we'll see what is happening.

    Best wishes-
    Lisa
  • Trapbear
    Trapbear Member Posts: 108 Member
    #5
    chicoturner said:

    Hi Tom. I am involved with
    Hi Tom. I am involved with UCSF clinical trials. I don't have any names as the last one I was on was still just a number. What I think you will find, if you are a stage 4, is that you will be eligible foe Phase 1 trials. It seems to me that many of the new trials are combinations of drugs we have already used or were effective on other cancers and now they are trying them with other drugs. Where do you live? I know that many of the UC hospitals do trials. Currently I am on a holding pattern waiting to see if I have a mutated C-RAF gene which is what they are looking for for a new trial. I too am K-RAS mutated and could not take some of the newer drugs.. Make sure your Docs know you want to do trials so they can send you to where you can get involved. It certainly is a different world. Best to you. I hope you will stay in touch. Jean

    HI Jean,
    Hi Jean,
    We just found out that my husbands lung mets are slowly growing again. He was on folfiri and avastin for 8 cylcle, and now on 5FU plus avastin for the past 6 months. He is going to go back on folfiri but our onc wants us to go to UCSF to look into clinical trials. He mentioned a b-raf trial, is that the one you are waiting for? He is K-RAS mutant like you so no erbitux, etc. I hope you are doing well and that you can get on another trial. Bill
  • kuastoi
    kuastoi Member Posts: 63
    #6
    lisa42 said:

    look into gemcitabine and xeloda
    Hi Tom,

    About a year ago I was looking into clinical trials and didn't find any that worked for me. I saw Dr. Lenz at USC and he recommended that I start on gemcitabine (Gemzar) and capecitabine (Xeloda), based on a clinical trial out of USC in 2005. Someone else sent me a PM today asking about it. For whatever reason, the clinical trial never published its results, but they were pretty good and Dr. Lenz recommended it based on the results (he oversaw the clinical trial of it).
    So, in March 2010, I started on Gemzar, Xeloda, and my onc also added in Avastin.
    I will try to get a copy of my chemo orders so that I can see what my actual dosage is. Gemzar is FDA approved for pancreatic cancer, not colorectal. It was a fight at first with my insurance, as they didn't want to pay for it. After two rejections, my husband and I decided to pay cash while we fought. We forked out close to $7,000 before I made headway with the insurance by applying/pleading to the State Dept. of Managed Care in California. I thought it would be a long drawn out process, but I got a phone call from my insurance (Health Net) about 2 wks after I sent it. They told me they received a faxed copy from the Dept of Managed Care of what I sent them & they'd like to inform me that they are reversing their decision and will be covering the Gemzar for me, including reimbursing me for what I had already paid out of pocket. That tells you to never give up, because I thought there was no way they were going to give in!

    Somewhere in all my medical file stuff, I have a copy of what Dr. Lenz put out on the results of the clinical trial. I will try to dig it out. It wasn't a very good copy and was actually hard to read, single spaced, but it was the results.

    I've now been on it for 10 months. About 4 months ago, I had my Gemzar dose reduced because my platelets were crashing pretty low (that is the main side effect of Gemzar is that it causes the platelets to drop a lot). The first few months, my tumors showed slight shrinkage and nothing new has grown in me while on this treatment in 10 months. Actually, my last scan was Nov. 4th, so my info goes up until that point. My CEA has been rising quite a bit lately, however, I am thinking this may be from the reduced Gemzar dose.
    Just this past week, my oncologist decided to change me from Xeloda to the 5FU pump. This was mainly due to hand/foot side effects from Xeloda, but there is also another reason for doing this... With Gemzar and Xeloda, I have been on a 3 week cycle- 2 weeks in a row of getting Gemzar/Avastin once a week and taking Xeloda those same 2 wks, then 1 week off, then start over. Changing to the 5FU pump/leucovorin instead of Xeloda is changing me to an every other week cycle. Since I won't ever go 2 wks in a row of getting the Gemzar anymore, my onc is upping my Gemzar dose again to what I was getting when I first started it. I am hoping this will help turn around my rising CEA! I'm due for another scan in Feb., so we'll see what is happening.

    Best wishes-
    Lisa

    Thanks...
    I lost track of my own thread for a few days there - thanks for the feedback.

    To answer some questions - I am stage IV, diagnosed March 09. I live in Maine and have been to Dana Farber in Boston about a year ago - but stayed on treatment in Maine as the first line drugs were holding me. I've never been NED but got my CEA down to 5 at one point this past fall. Had to come off Oxy due to neuropathy - never got better. Had to come avastin due to a bowel perforation. Now the CEA is rising on FOLFIRI anderbitux ( I am KRAS wild type).

    Lisa, I have been following your posts and appreciate you input on Gemzar - I have been thinking that's is where I am headed too.

    I am off to Mass General on Monday and have a CT tomorrow - we'll see I guess. I also have a sister in LA and have thought of taking a trip to see her and drop in on Dr Lenz as well. At least a good excuse to get out of Maine this time of year.

    I still feel strong, eating like a horse, exercising - and eating veggie. Got to get back into juicing though - have slipped since the bowel perf problems in the summer.

    Again, thanks - will be needing more support and feedback as I tread into uncharted waters

    Tom

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