How many chemo regiments for CRC?

tabur
tabur Member Posts: 71 Member
edited March 2014 in Colorectal Cancer #1
I guess what I am asking is, what's next?

Pam was diagnosed with CRC w/mets to liver in Dec 08. She was started on Folfox 6 w/Avastin. At first it worked great and the scans revealed shrinking tumors. Then, the Avastin caused an elevated protein level in her urine (and she also had a k-ras mutation?) and she was taken off this regiment.

Since August of 09, she has been on Irinotecan and Xeloda with great results. She handled it well and the tumors were kept in check. That is, until now. She had a scan on Tuesday and the tumors are growing again. The onc is weaning her off the oral Xeloda and we meet with him next Tuesday.

He mentioned that because of her relatively young age (52) and the fact that her liver functions are normal, she may be a good candidate for experimental therapy.

My questions to the collective are:
Are there any other regiments I should be questioning him about?
Does anyone have any experience with experimental treatments?

After two failures, I have never been so scared. I can't bear the thought of losing her. She, on the other hand, has maintained her positive mental attitude and is ready for the next battle. I admire her so much.

Thank you for listening and any and all responses.

Al

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #2
    Hi Al and Pam
    First, sorry to hear of Pam's situation and welcome to the board.
    How many chemo regimens for CRC...

    It might be easier to say if we knew a little more about her situation. I was Dx over 6 years ago at stage IV and was on Avastin with good results early on. I'm currently on Irinotecan and Erbitux and that combo is keeping things in check.

    Has she had any surgeries? I had a HAI pump (see this post for more info) put in early on that did wonders with shrinking the liver tumors. I see the subject from a different side than you do, Pam seems to have a very positive attitude and THAT will carry her a long way. I can imagine it's scary as hell for you, I know my wife has to deal with the same issues and it's rough on her at times. Try not to look at things as "two failures" but as not finding the right therapy for her yet. There are other things out there I'm sure but I do not do a lot of research since the path I am taking is working for me. I'm sure others will post as evening approached.
    Hang in there Al, keep supporting Pam.
    You've come to a great place to get some input and support
    -phil
  • tabur
    tabur Member Posts: 71 Member
    #3
    PhillieG said:

    Hi Al and Pam
    First, sorry to hear of Pam's situation and welcome to the board.
    How many chemo regimens for CRC...

    It might be easier to say if we knew a little more about her situation. I was Dx over 6 years ago at stage IV and was on Avastin with good results early on. I'm currently on Irinotecan and Erbitux and that combo is keeping things in check.

    Has she had any surgeries? I had a HAI pump (see this post for more info) put in early on that did wonders with shrinking the liver tumors. I see the subject from a different side than you do, Pam seems to have a very positive attitude and THAT will carry her a long way. I can imagine it's scary as hell for you, I know my wife has to deal with the same issues and it's rough on her at times. Try not to look at things as "two failures" but as not finding the right therapy for her yet. There are other things out there I'm sure but I do not do a lot of research since the path I am taking is working for me. I'm sure others will post as evening approached.
    Hang in there Al, keep supporting Pam.
    You've come to a great place to get some input and support
    -phil

    Thank you Phil...
    ...for the reply.

    Pam was diagnosed in Dec 08, Stage IV w/mets to liver. Long story short, 2 oncologists and a surgeon agreed that surgery is not an option for her. Tumors are numerous and diffuse. Her current onc, who she adores, started her on what he coined "first line chemo". That was the Folfox 6 and Avastin. She wore the 46 hour pump but I know it's not the type you are referring to. After several months of treatment, scans showed positive results. Then the Avastin caused issues stated in my original post. The onc then ordered some sort of genetic test done that showed a k-ras mutation. This ruled out treatment with certain drugs, like Erbitux for example.

    Irinotecan followed with oral Xeloda. Again, this combo has been working since last August but now appears to have stopped.

    So...surgery is not an option and remains that way, Folfox 6 w/Avastin is out, Erbitux is out as well as all EGFR Inhibitors, Irinotecan and Xeloda are out. With all these "setbacks" (you are right, I shouldn't have used the term "failures") we are under the impression that experimental is our next option.

    Her onc is associated with Johns Hopkins and also has contacts at SK. We have an appointment with him next Tuesday and hopefully he can propose some options.

    Pam's original prognosis from her first onc was 1 1/2 to 2 years. That weighs heavily on me as the 1 1/2 year mark approaches. I know better than to listen to statistics but it keeps popping up in my head, I can't stop it. When I read about Stage IV's living 5 or more years I want that for Pam.

    I guess deep down, I really don't expect answers from the forum. Cancer seems to be a very personal thing and you all have your own problems to deal with. I truly feel for all of you and appreciate the support you provide one another and to us caregivers too.

    Bless you.

    Al
  • msccolon
    msccolon Member Posts: 1,917 Member
    #4
    tabur said:

    Thank you Phil...
    ...for the reply.

    Pam was diagnosed in Dec 08, Stage IV w/mets to liver. Long story short, 2 oncologists and a surgeon agreed that surgery is not an option for her. Tumors are numerous and diffuse. Her current onc, who she adores, started her on what he coined "first line chemo". That was the Folfox 6 and Avastin. She wore the 46 hour pump but I know it's not the type you are referring to. After several months of treatment, scans showed positive results. Then the Avastin caused issues stated in my original post. The onc then ordered some sort of genetic test done that showed a k-ras mutation. This ruled out treatment with certain drugs, like Erbitux for example.

    Irinotecan followed with oral Xeloda. Again, this combo has been working since last August but now appears to have stopped.

    So...surgery is not an option and remains that way, Folfox 6 w/Avastin is out, Erbitux is out as well as all EGFR Inhibitors, Irinotecan and Xeloda are out. With all these "setbacks" (you are right, I shouldn't have used the term "failures") we are under the impression that experimental is our next option.

    Her onc is associated with Johns Hopkins and also has contacts at SK. We have an appointment with him next Tuesday and hopefully he can propose some options.

    Pam's original prognosis from her first onc was 1 1/2 to 2 years. That weighs heavily on me as the 1 1/2 year mark approaches. I know better than to listen to statistics but it keeps popping up in my head, I can't stop it. When I read about Stage IV's living 5 or more years I want that for Pam.

    I guess deep down, I really don't expect answers from the forum. Cancer seems to be a very personal thing and you all have your own problems to deal with. I truly feel for all of you and appreciate the support you provide one another and to us caregivers too.

    Bless you.

    Al

    expiration dates
    are for milk not people! I've passed many expiration dates and i'm still here! So have others on this board! You just have to be determined, show the doctors you are determined and keep looking for other opinions! I really think that as long as you appear determined not to give up, your doctors will continue to fight for you; after all, isn't that what they do? Find out about trials, go to a large cancer center, do some phone consultations ... I always go online and look for what procedure I'm interested in, then check my "local" cancer centers to see who's prominent with that procedure. Then I contact them and contact them until I get a response! :) I'm still relatively young and don't look sick, and I think that helps. It will help you too! Be your wife's advocate. At least you will know you've done everything you can!
    mary
  • peterhw
    peterhw Member Posts: 69
    #5
    Clinical Trial
    Hi Al and Pam,

    My situation is very similar to Pam. I am 53 years old and have liver and lung mets. The FOLFOX+Avastin and FOLFIRI+Avastin work a while but then stop working. I switched my treatment to Johns Hopkins. My first clinical trial last two months and was not effective. The second trial had great result for 4 months and then stop working. I am going to start the third clinical trial in about 3 weeks. There are a lot of clinical trial available in Johns Hopkins. Ask you onc to contact Dr. Azad's office. She is the principal investigator of my third clinical trial. PM me if you need more detail info.

    Peter
  • C Dixon
    C Dixon Member Posts: 201
    #6
    From an article about Recurrent CRC
    Strategies to Improve Treatment of Stage IV Colon Cancer

    http://news.cancerconnect.com/recurrent-colon-cancer/

    New Combinations of Systemic Therapy

    Xeloda plus Eloxatin (XELOX): The chemotherapy combination referred to as XELOX appears to be a highly effective regimen for patients with advanced colorectal cancer who have stopped responding to prior chemotherapy. Among 36 patients who were treated with XELOX, two-thirds (66%) experienced an anticancer response or disease stabilization. Even the patients who had stopped responding to prior Eloxatin-based therapy benefited from XELOX treatment; nearly 70% achieved an anticancer response or disease stabilization. The average time before the cancer progressed was nearly 7 months, and over half of the patients (54%) survived one year or more following therapy.[16]
    Liver-Directed Therapies

    Doctors continue to develop and refine techniques for treating patients with colon cancer that has spread to the liver, including hepatic artery infusion, chemoembolization, and other liver-directed therapies. For patients with liver-dominant disease, these strategies are being utilized to shrink the cancer and increase the number of patients eligible for surgical removal of their cancer.

    Treatment planning with laparoscopic surgery: Laparoscopy is a minimally invasive surgical technique that allows physicians to view the inside of the body using probes that are inserted through a small incision in the abdomen.

    Researchers from Oregon have reported that laparoscopic surgery provides a way to explore the extent of metastases and confirm or change treatment plans prior to conducting more extensive surgery. When 136 patients with liver metastases secondary to colorectal cancer were evaluated with laparoscopic surgery, one-quarter (25%) were found to have untreatable disease (meaning their cancer was more extensive than previously diagnosed). Overall, nearly half (48%) of the patients had their treatment plan changed based on the laparoscopy findings. For patients who were found to have untreatable cancer, this means that unnecessary and more extensive surgery was avoided.[17]

    Radioactive (iodine 131-labeled) labetuzumab: Iodine 131-labeled labetuzumab is comprised of two separate portions: a monoclonal antibody, labetuzumab (a protein and a type of targeted therapy) and radioactive iodine-131 that releases radiation. Labetuzumab is designed to bind to a specific protein, called the carcinoembryonic antigen (CEA). CEA is present on colon cancer cells but not healthy cells. Once labetuzumab binds to the CEA on the cancer cell, the iodine-131 emits radiation to kill the cell.

    Radioactive labetuzumab has shown initial promise in improving survival in the treatment of patients with colorectal cancer that has spread to the liver. After having their liver metastases completely removed with surgery, 23 patients were treated with one dose of radioactive labetuzumab. Patients survived, on average, nearly 5 years (58 months). A group of similar patients who just underwent surgery survived, on average, less than 3 years (31 months). [18] The benefit of labetuzumab in this trial warrants further study in larger clinical trials.

    Immunotherapy

    The goal of immunotherapy is to help the body to recognize cancer cells as a threat and activate immune cells to attack the cancer.

    Cancer cells are once normal cells that have gone awry. However, the immune system—the body’s natural defense system against disease—does not distinguish cancer cells from normal cells. For this reason, cancer cells are permitted to grow in the body.

    Immunotherapy stimulates the immune system to recognize and attack threats to health, such as viruses. For this reason, cancer immunotherapies may also be called cancer vaccines. Treatment with combination chemotherapy plus agents that stimulate the immune system to attack the cancer—called immunotherapies—may delay disease progression substantially in patients with metastatic colon cancer.

    TroVax®: TroVax is a cancer vaccine that is designed to stimulate the immune system to recognize a small protein found on many cancer cells—called 5T4 antigen—and attack the cells that display this protein. Patients with cancer cells that express the 5T4 antigen have a poor prognosis and are at a greater risk of cancer spread.

    TroVax plus chemotherapy may be a promising treatment for 5T4-expressing metastatic colorectal cancer. Two phase II clinical trials have recently demonstrated the safety of the addition of TroVax to chemotherapy regimens in stage IV colorectal cancer. In both trials, TroVax induced immune responses in all patients, demonstrated control of cancer growth in a large majority of patients and was safe and well tolerated.[19],[20] Researchers are currently designing a phase III trial of Trovax given along with chemotherapy in stage IV colon or rectal cancer. The trial will aim to determine whether Trovax improves survival.

    GM-CSF and IL-2: Granulocyte macrophage colony-stimulating factor (GM-CSF) and interleukin-2 (IL-2) are proteins produced by the body that stimulate the immune system. GM-CSF is a growth factor that stimulates the body to produce white blood cells. Both GM-CSF and IL-2 can be produced in a laboratory. These substances have been administered to cancer patients to help their immune system attack the cancer.

    GM-CSF and IL-2 were administered to 29 patients with advanced colorectal cancer in combination with Eloxatin, 5-FU, and Gemzar® (gemcitabine) chemotherapy. Nearly all patients (96.5%) experienced either anticancer responses or had their disease stabilized with treatment. The average time before cancer progressed was over one year (12.5 months). Laboratory evaluation of blood samples from the patients indicated that their immune systems did increase their anticancer response. Clinical trials are ongoing to determine if these treatments improve survival.[21]
  • tabur
    tabur Member Posts: 71 Member
    #7
    C Dixon said:

    From an article about Recurrent CRC
    Strategies to Improve Treatment of Stage IV Colon Cancer

    http://news.cancerconnect.com/recurrent-colon-cancer/

    New Combinations of Systemic Therapy

    Xeloda plus Eloxatin (XELOX): The chemotherapy combination referred to as XELOX appears to be a highly effective regimen for patients with advanced colorectal cancer who have stopped responding to prior chemotherapy. Among 36 patients who were treated with XELOX, two-thirds (66%) experienced an anticancer response or disease stabilization. Even the patients who had stopped responding to prior Eloxatin-based therapy benefited from XELOX treatment; nearly 70% achieved an anticancer response or disease stabilization. The average time before the cancer progressed was nearly 7 months, and over half of the patients (54%) survived one year or more following therapy.[16]
    Liver-Directed Therapies

    Doctors continue to develop and refine techniques for treating patients with colon cancer that has spread to the liver, including hepatic artery infusion, chemoembolization, and other liver-directed therapies. For patients with liver-dominant disease, these strategies are being utilized to shrink the cancer and increase the number of patients eligible for surgical removal of their cancer.

    Treatment planning with laparoscopic surgery: Laparoscopy is a minimally invasive surgical technique that allows physicians to view the inside of the body using probes that are inserted through a small incision in the abdomen.

    Researchers from Oregon have reported that laparoscopic surgery provides a way to explore the extent of metastases and confirm or change treatment plans prior to conducting more extensive surgery. When 136 patients with liver metastases secondary to colorectal cancer were evaluated with laparoscopic surgery, one-quarter (25%) were found to have untreatable disease (meaning their cancer was more extensive than previously diagnosed). Overall, nearly half (48%) of the patients had their treatment plan changed based on the laparoscopy findings. For patients who were found to have untreatable cancer, this means that unnecessary and more extensive surgery was avoided.[17]

    Radioactive (iodine 131-labeled) labetuzumab: Iodine 131-labeled labetuzumab is comprised of two separate portions: a monoclonal antibody, labetuzumab (a protein and a type of targeted therapy) and radioactive iodine-131 that releases radiation. Labetuzumab is designed to bind to a specific protein, called the carcinoembryonic antigen (CEA). CEA is present on colon cancer cells but not healthy cells. Once labetuzumab binds to the CEA on the cancer cell, the iodine-131 emits radiation to kill the cell.

    Radioactive labetuzumab has shown initial promise in improving survival in the treatment of patients with colorectal cancer that has spread to the liver. After having their liver metastases completely removed with surgery, 23 patients were treated with one dose of radioactive labetuzumab. Patients survived, on average, nearly 5 years (58 months). A group of similar patients who just underwent surgery survived, on average, less than 3 years (31 months). [18] The benefit of labetuzumab in this trial warrants further study in larger clinical trials.

    Immunotherapy

    The goal of immunotherapy is to help the body to recognize cancer cells as a threat and activate immune cells to attack the cancer.

    Cancer cells are once normal cells that have gone awry. However, the immune system—the body’s natural defense system against disease—does not distinguish cancer cells from normal cells. For this reason, cancer cells are permitted to grow in the body.

    Immunotherapy stimulates the immune system to recognize and attack threats to health, such as viruses. For this reason, cancer immunotherapies may also be called cancer vaccines. Treatment with combination chemotherapy plus agents that stimulate the immune system to attack the cancer—called immunotherapies—may delay disease progression substantially in patients with metastatic colon cancer.

    TroVax®: TroVax is a cancer vaccine that is designed to stimulate the immune system to recognize a small protein found on many cancer cells—called 5T4 antigen—and attack the cells that display this protein. Patients with cancer cells that express the 5T4 antigen have a poor prognosis and are at a greater risk of cancer spread.

    TroVax plus chemotherapy may be a promising treatment for 5T4-expressing metastatic colorectal cancer. Two phase II clinical trials have recently demonstrated the safety of the addition of TroVax to chemotherapy regimens in stage IV colorectal cancer. In both trials, TroVax induced immune responses in all patients, demonstrated control of cancer growth in a large majority of patients and was safe and well tolerated.[19],[20] Researchers are currently designing a phase III trial of Trovax given along with chemotherapy in stage IV colon or rectal cancer. The trial will aim to determine whether Trovax improves survival.

    GM-CSF and IL-2: Granulocyte macrophage colony-stimulating factor (GM-CSF) and interleukin-2 (IL-2) are proteins produced by the body that stimulate the immune system. GM-CSF is a growth factor that stimulates the body to produce white blood cells. Both GM-CSF and IL-2 can be produced in a laboratory. These substances have been administered to cancer patients to help their immune system attack the cancer.

    GM-CSF and IL-2 were administered to 29 patients with advanced colorectal cancer in combination with Eloxatin, 5-FU, and Gemzar® (gemcitabine) chemotherapy. Nearly all patients (96.5%) experienced either anticancer responses or had their disease stabilized with treatment. The average time before cancer progressed was over one year (12.5 months). Laboratory evaluation of blood samples from the patients indicated that their immune systems did increase their anticancer response. Clinical trials are ongoing to determine if these treatments improve survival.[21]

    Peter and C Dixon...
    ...thank you so much for your responses. I am printing these out for our visit to the onc next Tuesday. He has promised my wife several options and he has been very receptive to our input, he lost his own wife (a nurse) to cancer 8 years ago.

    Peter, PM in route to you...

    Bless you both,

    Al
  • tabur
    tabur Member Posts: 71 Member
    #8
    msccolon said:

    expiration dates
    are for milk not people! I've passed many expiration dates and i'm still here! So have others on this board! You just have to be determined, show the doctors you are determined and keep looking for other opinions! I really think that as long as you appear determined not to give up, your doctors will continue to fight for you; after all, isn't that what they do? Find out about trials, go to a large cancer center, do some phone consultations ... I always go online and look for what procedure I'm interested in, then check my "local" cancer centers to see who's prominent with that procedure. Then I contact them and contact them until I get a response! :) I'm still relatively young and don't look sick, and I think that helps. It will help you too! Be your wife's advocate. At least you will know you've done everything you can!
    mary

    Mary...
    I am so sorry Mary, I completely missed your post! I will blame it on being a "board newb".

    I respect your advice. Our onc has promised us several options during our appointment next Tuesday. Even though we are in PA, his office is associated with Johns Hopkins so we trust there will be a treatment forthcoming. Pam, however, will insist on no further appointments until we return from our camping trip on the 25th (we leave on the 20th). She has been looking forward to this trip since early spring :) We love camping and it really is her "best" medicine.

    I wish you all the best Mary and will try my hardest to remember that "expiration dates are for milk, not people!"

    Al
  • msccolon
    msccolon Member Posts: 1,917 Member
    #9
    tabur said:

    Mary...
    I am so sorry Mary, I completely missed your post! I will blame it on being a "board newb".

    I respect your advice. Our onc has promised us several options during our appointment next Tuesday. Even though we are in PA, his office is associated with Johns Hopkins so we trust there will be a treatment forthcoming. Pam, however, will insist on no further appointments until we return from our camping trip on the 25th (we leave on the 20th). She has been looking forward to this trip since early spring :) We love camping and it really is her "best" medicine.

    I wish you all the best Mary and will try my hardest to remember that "expiration dates are for milk, not people!"

    Al

    have fun camping!
    Glad to hear your onc is talking options! Also glad to hear that Pam understands that this battle is a balance between doing what's necessary and what's fun! Keep it up and you'll continue making memories!
    mary
  • coloCan
    coloCan Member Posts: 1,944 Member
    #10
    tabur said:

    Peter and C Dixon...
    ...thank you so much for your responses. I am printing these out for our visit to the onc next Tuesday. He has promised my wife several options and he has been very receptive to our input, he lost his own wife (a nurse) to cancer 8 years ago.

    Peter, PM in route to you...

    Bless you both,

    Al

    Might want tio check the following article just published on
    what the future holds for CRC, as of now....
    (don't know how to do easier linkage)

    www.live-pr.com/en/cancer-drug-discoveries-what-the-future-r1048470635.htm

    lists current and potential chemo for CRC
  • chicoturner
    chicoturner Member Posts: 282
    #11
    What's next
    Hi Al and Pam, sorry for the discouraging news. I am sort of in your boat too. Have tried the chemo that is avail. to me ( Have KRAS mutation too) so it is limited. My onc here in Chico, Ca has referred me to UCSF. He felt they had more options avail, such as clinical trials. I have met with an onc there and they just reviewed my new scans and cea test. The nodules on my lungs are growing without meds, so.....It looks like I will begin a trial. My thought is that is bound to work for someone, sometime and it might as well be me! I feel good and am anxious to start work to conquer again. ('ve had a 3 + mo. break). I know you are scared, me to, but we can't dwell on that. (I try to save that for when I watch a sad movie!) but enjoy what we have and know that things in the med. world are changing daily! The right thing for us is still out there and we can wait it out!! Have a wonderful camping trip! We also like to camp and I find that having plans for fun things to do really helps me focus on living! Best to you. Jean
  • Brenda3.16
    Brenda3.16 Member Posts: 209
    #12
    chicoturner said:

    What's next
    Hi Al and Pam, sorry for the discouraging news. I am sort of in your boat too. Have tried the chemo that is avail. to me ( Have KRAS mutation too) so it is limited. My onc here in Chico, Ca has referred me to UCSF. He felt they had more options avail, such as clinical trials. I have met with an onc there and they just reviewed my new scans and cea test. The nodules on my lungs are growing without meds, so.....It looks like I will begin a trial. My thought is that is bound to work for someone, sometime and it might as well be me! I feel good and am anxious to start work to conquer again. ('ve had a 3 + mo. break). I know you are scared, me to, but we can't dwell on that. (I try to save that for when I watch a sad movie!) but enjoy what we have and know that things in the med. world are changing daily! The right thing for us is still out there and we can wait it out!! Have a wonderful camping trip! We also like to camp and I find that having plans for fun things to do really helps me focus on living! Best to you. Jean

    Hi Al and Pam,
    I also have
    Hi Al and Pam,
    I also have liver and lung mets. Dx 3/09. Folfox worked good but had to stop due to various side effects. Xeloda alone kept things stable for 7 months. My last scan showed lung mets growing, so I will start folfori next. I also have the kras mutation. Good luck with your next step . It is great that your onc is ready to set you up with some other options. Is your onc in a big facility ? I also live in Pa. Have a great camping trip ! Brenda
  • tabur
    tabur Member Posts: 71 Member
    #13
    Brenda3.16 said:

    Hi Al and Pam,
    I also have
    Hi Al and Pam,
    I also have liver and lung mets. Dx 3/09. Folfox worked good but had to stop due to various side effects. Xeloda alone kept things stable for 7 months. My last scan showed lung mets growing, so I will start folfori next. I also have the kras mutation. Good luck with your next step . It is great that your onc is ready to set you up with some other options. Is your onc in a big facility ? I also live in Pa. Have a great camping trip ! Brenda

    Thank you(s) and well wishes
    Peter, received your PM, thank you very much and we are hoping that "three, is indeed the charm".

    Interesting article colaCan. Thanks for sharing.

    Jean, for years Pam and I have planned on "fulltiming" in a camper upon my retirement. If you're not familiar with this lifestyle, Google "Escapees". For now, long weekends give us our fix. Best wishes to you on your upcoming trial.

    Brenda, I read your post of your latest scan. You and Pam had similar results with Xeloda, she has been on it since last August. Her onc is Dr. Scott Barnes of the Central PA Hematology and Oncology Associates in Lemoyne (west shore of Harrisburg, about an hour south of where we live). They have an affiliation with JH and I'll post what he comes up with this Tuesday.

    Bless you guys, we are both less nervous about trying something experimental.

    Al
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #14
    what I'm on
    Hi Al,

    I am also k-ras mutated, and have also already taken all the FDA approved chemo treatments/regimens for colorectal cancer. They worked at first, but back in November, I showed increased cancerous activity and growth while on Folfiri. At that point, I went on an experimental regimen with a Dr. Cantrell in Nashville, TN. It was interferon and lovastatin, but it didn't work for me, as my scan in February showed. At that point, my oncologist was at a loss for what I should do next, except to find a clinical trial somewhere. I live in so. Cal (north San Diego), and looked into trials in San Diego (UCSD), Orange Co (UCI), and LA (USC, UCLA, and City of Hope). There was only one trial I qualified for in all these places, but it was full and I was #27 on the waiting list. I was really starting to panic at that point. Both Dr. Lenz at USC and Dr. Fanta at UCSD recommended that I should take Gemzar (gemcitabine) and Xeloda (capecitabine). There was a phase I trial on it in 2004 and a phase II trial on it at USC in 2006. For some reason, the clinicaltrials.gov website shows "no results published" on this trial. I never did find out why they results aren't published, but when I had a consultation appt. w/ Dr. Lenz in Feb, he told me the results. There was definitely some good response to it. Normally, gemzar is FDA approved treatment for pancreatic cancer, kidney cancer, and some form of breast cancer, but not colon/colorectal cancer. SO- my regular oncologist put in to my insurance for it, but it was denied on the basis that it was an "investigational" drug for colorectal cancer. I had to fight hard- I appealed with a letter and compelling info from Dr. Lenz as to why I should be allowed to take Gemzar- and they still denied it again. I don't believe they even read any of the info Dr. Lenz sent. I went ahead and started on it Mar. 17, paying for it ourselves. I then contacted the California Dept. of managed Care- filled out their app, sent all the info from Dr. Lenz, Dr. Fanta, and my regular onc, Dr. Helton, along with a carefully written letter by me pointing out and referring to all the info and reasons why I should be granted this treatment. I really didn't think I'd get anywhere & neither did my onc. To my surprise, a week and a half after I sent all this to the Dept of managed Care, I got a call from Health Net, telling me they just received a forwarded copy of the letter I sent to the Dept. of Managed Care, and they've reversed their decision and have decided to cover the gemzar for me, as well as reimbursing me what I had already paid out for it. I believe this decision by Health Net is setting precedent and this info can be used by other people trying to get non FDA approved drugs covered- for both health Net and other insurance companies!
    My dilemma was then... ok, now that it's covered, is it working?? Well, I just had a PET/CT scan on May 9th & it showed everything was stable. I, of course, had hoped for even better than that, but this was actually very good news because my 3 prior scans had all showed an increase in cancerous growth and activity. My onc is pleased and reminded me that I haven't been on it that long, so stable shows it's definitely doing something.

    My cancer seems to be quite aggressive, as I've had two recurrences- one after just 5 months and the other after just 4 months. I'm k-ras mutated as well, so my options were more limited. I have "innumerable" subcentimeter lung nodules, and I've had a recurrence in both my rectum and my liver- so the fact that after being on gemzar/5FU for just two months has stopped the cancer, is very, very good. (after my onc appt this past week, I switched from 5FU to Xeloda and we also added in Avastin).
    I'd suggest this combination to your oncologist. let me know if you have any questions about it and I can send you some links to more info on it for your onc to read up on.

    Best wishes!
    Lisa
  • tabur
    tabur Member Posts: 71 Member
    #15
    lisa42 said:

    what I'm on
    Hi Al,

    I am also k-ras mutated, and have also already taken all the FDA approved chemo treatments/regimens for colorectal cancer. They worked at first, but back in November, I showed increased cancerous activity and growth while on Folfiri. At that point, I went on an experimental regimen with a Dr. Cantrell in Nashville, TN. It was interferon and lovastatin, but it didn't work for me, as my scan in February showed. At that point, my oncologist was at a loss for what I should do next, except to find a clinical trial somewhere. I live in so. Cal (north San Diego), and looked into trials in San Diego (UCSD), Orange Co (UCI), and LA (USC, UCLA, and City of Hope). There was only one trial I qualified for in all these places, but it was full and I was #27 on the waiting list. I was really starting to panic at that point. Both Dr. Lenz at USC and Dr. Fanta at UCSD recommended that I should take Gemzar (gemcitabine) and Xeloda (capecitabine). There was a phase I trial on it in 2004 and a phase II trial on it at USC in 2006. For some reason, the clinicaltrials.gov website shows "no results published" on this trial. I never did find out why they results aren't published, but when I had a consultation appt. w/ Dr. Lenz in Feb, he told me the results. There was definitely some good response to it. Normally, gemzar is FDA approved treatment for pancreatic cancer, kidney cancer, and some form of breast cancer, but not colon/colorectal cancer. SO- my regular oncologist put in to my insurance for it, but it was denied on the basis that it was an "investigational" drug for colorectal cancer. I had to fight hard- I appealed with a letter and compelling info from Dr. Lenz as to why I should be allowed to take Gemzar- and they still denied it again. I don't believe they even read any of the info Dr. Lenz sent. I went ahead and started on it Mar. 17, paying for it ourselves. I then contacted the California Dept. of managed Care- filled out their app, sent all the info from Dr. Lenz, Dr. Fanta, and my regular onc, Dr. Helton, along with a carefully written letter by me pointing out and referring to all the info and reasons why I should be granted this treatment. I really didn't think I'd get anywhere & neither did my onc. To my surprise, a week and a half after I sent all this to the Dept of managed Care, I got a call from Health Net, telling me they just received a forwarded copy of the letter I sent to the Dept. of Managed Care, and they've reversed their decision and have decided to cover the gemzar for me, as well as reimbursing me what I had already paid out for it. I believe this decision by Health Net is setting precedent and this info can be used by other people trying to get non FDA approved drugs covered- for both health Net and other insurance companies!
    My dilemma was then... ok, now that it's covered, is it working?? Well, I just had a PET/CT scan on May 9th & it showed everything was stable. I, of course, had hoped for even better than that, but this was actually very good news because my 3 prior scans had all showed an increase in cancerous growth and activity. My onc is pleased and reminded me that I haven't been on it that long, so stable shows it's definitely doing something.

    My cancer seems to be quite aggressive, as I've had two recurrences- one after just 5 months and the other after just 4 months. I'm k-ras mutated as well, so my options were more limited. I have "innumerable" subcentimeter lung nodules, and I've had a recurrence in both my rectum and my liver- so the fact that after being on gemzar/5FU for just two months has stopped the cancer, is very, very good. (after my onc appt this past week, I switched from 5FU to Xeloda and we also added in Avastin).
    I'd suggest this combination to your oncologist. let me know if you have any questions about it and I can send you some links to more info on it for your onc to read up on.

    Best wishes!
    Lisa

    Wow Lisa...
    ...you really can fight city hall :)

    Pam and I read your post and are very happy for you. Stable is good! Plus, beating an insurance company would make anyone feel better! Here's hoping your next scan shows marked improvement.

    We now have a whole list of talking points with her onc and Gemzar is on the list.

    I doubt that Pam could go back on Avastin since it appears to have been the cause of the elevated protein in her urine.

    Since the Irinotecan and Xeloda appears to have stopped working, I'm not sure if Xeloda can play a part in future treatments. It would be a shame since she tolerated the Xeloda so well. In fact, she was supposed to cycle the Xeloda 2 weeks on, one off. She felt terrible when she came off so instead, she just halved the dose for her "off" week. Her onc said it was a first.

    After all these responses, we feel much better about meeting with the onc on Tuesday. We'll let you all know what the next treatment is...

    Hugs...

    Al & Pam
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #16
    tabur said:

    Wow Lisa...
    ...you really can fight city hall :)

    Pam and I read your post and are very happy for you. Stable is good! Plus, beating an insurance company would make anyone feel better! Here's hoping your next scan shows marked improvement.

    We now have a whole list of talking points with her onc and Gemzar is on the list.

    I doubt that Pam could go back on Avastin since it appears to have been the cause of the elevated protein in her urine.

    Since the Irinotecan and Xeloda appears to have stopped working, I'm not sure if Xeloda can play a part in future treatments. It would be a shame since she tolerated the Xeloda so well. In fact, she was supposed to cycle the Xeloda 2 weeks on, one off. She felt terrible when she came off so instead, she just halved the dose for her "off" week. Her onc said it was a first.

    After all these responses, we feel much better about meeting with the onc on Tuesday. We'll let you all know what the next treatment is...

    Hugs...

    Al & Pam

    Xeloda
    Hi again,

    A thought on the Avastin and Xeloda- I actually had a recurrence while on both Xeloda and Avastin together on a "maintenance" dosage. Because of that, I thought that it would be of no use for me to ever go back on them too. BUT- the gemzar protocol that was on the clinical trial had gemzar together with either Xeloda or 5FU. Supposedly, it can work differently than when just alone- it can somehow help boost the other chemo drug. I don't know that they would give Pam gemzar without either Xeloda or 5FU, but that is something to ask about. I was also skeptical about the need to add in Avastin again, since I had the recurrence while on it. But, again, my onc says it work differently when added with other things & can help be a boost. I did have high blood pressure and nose bleeds from it & am now even wondering if it contributed to joint pain that I had, went away when I was off it, & has now seemed to start up again this past week since we've added it back in. I never thought of the joint pain as possibly being related to the Avastin before, but am now thinking it might be more than coincidental. We'll be monitoring my blood pressure and everything else carefully. I had never heard of it contributing to protein in the urine, but it sounds like they think it's done that to Pam.

    Well, I'm glad you have a list of possible treatments to disccus with the onc. Best wishes and take care- I'll be thinking of you Tuesday.

    Lisa
  • tabur
    tabur Member Posts: 71 Member
    #17
    lisa42 said:

    Xeloda
    Hi again,

    A thought on the Avastin and Xeloda- I actually had a recurrence while on both Xeloda and Avastin together on a "maintenance" dosage. Because of that, I thought that it would be of no use for me to ever go back on them too. BUT- the gemzar protocol that was on the clinical trial had gemzar together with either Xeloda or 5FU. Supposedly, it can work differently than when just alone- it can somehow help boost the other chemo drug. I don't know that they would give Pam gemzar without either Xeloda or 5FU, but that is something to ask about. I was also skeptical about the need to add in Avastin again, since I had the recurrence while on it. But, again, my onc says it work differently when added with other things & can help be a boost. I did have high blood pressure and nose bleeds from it & am now even wondering if it contributed to joint pain that I had, went away when I was off it, & has now seemed to start up again this past week since we've added it back in. I never thought of the joint pain as possibly being related to the Avastin before, but am now thinking it might be more than coincidental. We'll be monitoring my blood pressure and everything else carefully. I had never heard of it contributing to protein in the urine, but it sounds like they think it's done that to Pam.

    Well, I'm glad you have a list of possible treatments to disccus with the onc. Best wishes and take care- I'll be thinking of you Tuesday.

    Lisa

    Avastin
    Hi Lisa,

    When Pam was on Folfox 6 and Avastin, every trip to the onc would involve her giving a blood and urine sample. Since we didn't see the onc every visit, we'd report to the chemo lounge and await the results. On one such visit, they cancelled the treatment and ordered a 24 hour urine due to the protein levels they found. I can't remember what the normal range is supposed to be (somewhere in the hundreds or less) but hers was 5000. Once we stopped the Avastin, her levels eventually returned to normal. Here is what I found on the net.

    From Rxlist.com:
    "The most common adverse reactions observed in Avastin patients at a rate > 10% and at least twice the control arm rate, are epistaxis, headache, hypertension, rhinitis, proteinuria, taste alteration, dry skin, rectal hemorrhage, lacrimation disorder, back pain and exfoliative dermatitis."

    "Proteinuria
    Grade 3-4 proteinuria ranged from 0.7 to 7.4% in Studies 1, 2, 4 and 9. The overall incidence of proteinuria (all grades) was only adequately assessed in Study 9, in which the incidence was 20%. Median onset of proteinuria was 5.6 months (range 15 days to 37 months) after initiation of Avastin. Median time to resolution was 6.1 months (95% CI 2.8 months, 11.3 months). Proteinuria did not resolve in 40% of patients after median follow up of 11.2 months and required permanent discontinuation of Avastin in 30% of the patients who developed proteinuria (Study 9). "

    To me, this reads as an adverse reaction directly attributed to Avastin as opposed to a combination regiment. I could not find anything on Avastin alone to explain your joint pain but like you, I suspect it could very likely be the cause based on your history.

    If Pam's next regiment includes Xeloda, that would be fine as she tolerated it extremely well.

    Thank you for your thoughts, we'll know more tomorrow.

    Al
  • robinvan
    robinvan Member Posts: 1,012
    #18
    Al and Pam
    Good luck with your Oncologist visit tomorrow. I hope you come away with a new plan and a renewed sense of hope.

    Be well... Rob; in Vancouver
  • tabur
    tabur Member Posts: 71 Member
    #19
    robinvan said:

    Al and Pam
    Good luck with your Oncologist visit tomorrow. I hope you come away with a new plan and a renewed sense of hope.

    Be well... Rob; in Vancouver

    Thank you Rob
    We see that you too were dx Stage IV w/mets to liver back in 2004. Very encouraging for us relative newbs.

    Bless you.

    Pam and Al

    BTW, Pam loves your pic!

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