results: Tumor resistant to folfox & folfiri

emrose
emrose Member Posts: 136
edited March 2014 in Colorectal Cancer #1
As you may know my husband did 6mo of chemo only to find out the cancer spread to his lung! He had surgery on march 9 and we had his live tumor cells sent to Weisenthal Cancer Center where they tested several chemo drugs. We just got the results. Resistent to oxi, 5fu, irinotecan, mitomycin, gemzar, plus many others!! However it showed "intermidiate" response to three, and was completely sensitive to two combos of different drugs. I had not heard of most of the drugs he did respond to, but I'm doing my research! His tumor cells did show a "moderate" response to Avastin and an even stronger response to another similar, but less common, drug. 

When we found out the cancer had spread my husbands oncologist wanted him to try folfox again. No thanks! The side effects were horrible, but the tumor was resistent... Go figure! We meet with his dr Monday and I'm very interested to see what he thinks of these results!! We are actually meeting wih two oncologists on Monday to get a second opinion. We are trying to explore all our options. My husbands surgery went well and we are hoping any follow up treatment is just precautionary.

Anyway, we are grateful to have this information and I found the results very interesting! I wish we would have known about these tests eariler. We are working with someone who is having my husband get evey test imaginable because we are trying to treat him as an individual and not a statistic. He is unique, and so is his cancer. He doesn't fit the description of an average colon cancer patient, so we feel it's time to stop treating him like one. (actually - there is no average colon cancer patient!! You are ALL unique!! I wish the medical industry would treat you that way!)

Feeling pretty hopeful! Will keep you posted.

Comments

  • SpouseDx0108
    SpouseDx0108 Member Posts: 20
    Please Keep Us Updated
    When you find out the names of the drugs which your husband's tumors responded to? My husband starts chemo again tomorrow...oxilaplatin, leucovorin, and they'll eventually add avastin (when his surgery wound completely heals).

    Hoping the best for you :)
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    What a beautiful smile on
    What a beautiful smile on the little guy! Thanks for posting; please keep us updated.
  • sfmarie
    sfmarie Member Posts: 602
    Treatment Plan
    Sounds great! I like that you are treating him uniquely. Please keep us posted. I wish all oncologists treated this disease specifically and not just follow some protocol.
  • snommintj
    snommintj Member Posts: 601
    sfmarie said:

    Treatment Plan
    Sounds great! I like that you are treating him uniquely. Please keep us posted. I wish all oncologists treated this disease specifically and not just follow some protocol.

    Oncotyping is the future
    I had my tumors oncotyped in sept. I still can't figure out how to get them paid for. Is your insurance going to cover it? If you learn of any programs that will lesson the expense, I would greatly appreciate any info you have. There are several drugs that my tumors show a strong response to, they all cost over 10k per treatment and insurance won't cover them, since they aren't an approved treatment.
  • linandtom
    linandtom Member Posts: 67
    snommintj said:

    Oncotyping is the future
    I had my tumors oncotyped in sept. I still can't figure out how to get them paid for. Is your insurance going to cover it? If you learn of any programs that will lesson the expense, I would greatly appreciate any info you have. There are several drugs that my tumors show a strong response to, they all cost over 10k per treatment and insurance won't cover them, since they aren't an approved treatment.

    Oncotyping
    Can you tell me how this is done? Also, what drugs did your tumors show a strong response to? My husband is not doing well. He's been on Folfox, Folfiri, and now 3 different clinical trials. Many mets to his liver, and in his abdominal wall area. Not sure what next....another clinical trial - go back to Folfiri that did work at one time. His tumors are not responding to anything right now....dr said to keep trying clinical trials. Not sure if this is going to be best for us right now. I'll see what I can find out about Oncotyping. Maybe you can help by telling us more?
  • snommintj
    snommintj Member Posts: 601
    linandtom said:

    Oncotyping
    Can you tell me how this is done? Also, what drugs did your tumors show a strong response to? My husband is not doing well. He's been on Folfox, Folfiri, and now 3 different clinical trials. Many mets to his liver, and in his abdominal wall area. Not sure what next....another clinical trial - go back to Folfiri that did work at one time. His tumors are not responding to anything right now....dr said to keep trying clinical trials. Not sure if this is going to be best for us right now. I'll see what I can find out about Oncotyping. Maybe you can help by telling us more?

    caris dx
    You can have your Dr send a tumor sample. There are several labs around the country, but make sure they're doing the latest and greatest. I had mine in sept at their new labs in phoenix, I think. By December their was already a new test out that my previous test didn't cover.
    Basically they test for any and all protein over expressions or under expressions and other known tumor specific abnormalities. Once they get your specific genetic profile they cross reference it to all known literature. Take my cancer for example:

    I have stage 4 colon cancer with mets to liver and lungs. But genetically, my colon cancer is much closer to kidney cancer than colon cancer. My cancer over expresses the genes most typically associated with genetic over expressions in other people who have kidney cancer. But, my cancer is also closely related to breast cancer. As far as colon cancer goes. My cancer doesn't share any distinct known colon cancer over expression. I have a highly over expressed protein called SPARC, in fact I have the maximum over expression. Studies have shown that people who are even mildly SPARC over expressed respond extremely well to Abraxane with Mytomycin C. That cocktail runs about 20k a month so I've been holding out with conventional therapy. If things change for the worst I'll definitely get some but not until conventional treatment stops.
    Just as important as showing what works, the report also publishes things unlikely to work. Several things were excluded from working in my study including camptosar and oxaliplatin. What else is nice is that they give percentages of response rates. For me Camptosar had an ineffective rating of over 90% while oxaliplatin was only 60%. The abraxane mytomicin regimen has over a 90% positive response. Now certainly that doesn't mean it's going to cure me, it just means that I have a 90% chance of it slowing or killing it for a time. Caris Dx has a website, check them out
  • emrose
    emrose Member Posts: 136
    AnneCan said:

    What a beautiful smile on
    What a beautiful smile on the little guy! Thanks for posting; please keep us updated.

    Thanks!
    I LOVE his goofy little smile :)
  • emrose
    emrose Member Posts: 136
    snommintj said:

    Oncotyping is the future
    I had my tumors oncotyped in sept. I still can't figure out how to get them paid for. Is your insurance going to cover it? If you learn of any programs that will lesson the expense, I would greatly appreciate any info you have. There are several drugs that my tumors show a strong response to, they all cost over 10k per treatment and insurance won't cover them, since they aren't an approved treatment.

    $$$
    We are still lookin into the money part of all this! The tricky part, as you know. But I will keep you posted. I forgot I had seen you post about this inthe past. We did not go through the same lab as you, but same idea. I just don't understand why something like this isn't standard of care. You'd think insurance companies would rather pay for a drug that it acually might work! I mean, our insurance paid a ton of money for the folfox and folfiri my husband did. Gee, wouldn't they have liked to know that his tumor was resistant!? But... I'm preaching to the choir. I know you feel the same way!
  • emrose
    emrose Member Posts: 136
    Thanks!
    Thanks everyone! I will keep you all posted when I know and understand more. Especially after our appts tomorrow.
  • linandtom
    linandtom Member Posts: 67
    snommintj said:

    caris dx
    You can have your Dr send a tumor sample. There are several labs around the country, but make sure they're doing the latest and greatest. I had mine in sept at their new labs in phoenix, I think. By December their was already a new test out that my previous test didn't cover.
    Basically they test for any and all protein over expressions or under expressions and other known tumor specific abnormalities. Once they get your specific genetic profile they cross reference it to all known literature. Take my cancer for example:

    I have stage 4 colon cancer with mets to liver and lungs. But genetically, my colon cancer is much closer to kidney cancer than colon cancer. My cancer over expresses the genes most typically associated with genetic over expressions in other people who have kidney cancer. But, my cancer is also closely related to breast cancer. As far as colon cancer goes. My cancer doesn't share any distinct known colon cancer over expression. I have a highly over expressed protein called SPARC, in fact I have the maximum over expression. Studies have shown that people who are even mildly SPARC over expressed respond extremely well to Abraxane with Mytomycin C. That cocktail runs about 20k a month so I've been holding out with conventional therapy. If things change for the worst I'll definitely get some but not until conventional treatment stops.
    Just as important as showing what works, the report also publishes things unlikely to work. Several things were excluded from working in my study including camptosar and oxaliplatin. What else is nice is that they give percentages of response rates. For me Camptosar had an ineffective rating of over 90% while oxaliplatin was only 60%. The abraxane mytomicin regimen has over a 90% positive response. Now certainly that doesn't mean it's going to cure me, it just means that I have a 90% chance of it slowing or killing it for a time. Caris Dx has a website, check them out

    caris dx
    Thanks for sharing this info. Will discuss with our dr next week. Hope you are doing well today.
  • geotina
    geotina Member Posts: 2,111 Member
    Emrose
    I just don't get why they don't routinely do this type of tumor testing routinely. Ok, so George has done very well on Folfox but many have not done as well on their particular chemo. It breaks my hear to hear people doing everything they can, via chemo, and not getting the response they should.

    As an aside, that baby is just too georgous. Seems like a very happy baby and looking at that smile, well it just gives you the will to keep on going.

    Take care and keep on checking in with us.

    Tina
  • gdpawel
    gdpawel Member Posts: 523 Member
    snommintj said:

    caris dx
    You can have your Dr send a tumor sample. There are several labs around the country, but make sure they're doing the latest and greatest. I had mine in sept at their new labs in phoenix, I think. By December their was already a new test out that my previous test didn't cover.
    Basically they test for any and all protein over expressions or under expressions and other known tumor specific abnormalities. Once they get your specific genetic profile they cross reference it to all known literature. Take my cancer for example:

    I have stage 4 colon cancer with mets to liver and lungs. But genetically, my colon cancer is much closer to kidney cancer than colon cancer. My cancer over expresses the genes most typically associated with genetic over expressions in other people who have kidney cancer. But, my cancer is also closely related to breast cancer. As far as colon cancer goes. My cancer doesn't share any distinct known colon cancer over expression. I have a highly over expressed protein called SPARC, in fact I have the maximum over expression. Studies have shown that people who are even mildly SPARC over expressed respond extremely well to Abraxane with Mytomycin C. That cocktail runs about 20k a month so I've been holding out with conventional therapy. If things change for the worst I'll definitely get some but not until conventional treatment stops.
    Just as important as showing what works, the report also publishes things unlikely to work. Several things were excluded from working in my study including camptosar and oxaliplatin. What else is nice is that they give percentages of response rates. For me Camptosar had an ineffective rating of over 90% while oxaliplatin was only 60%. The abraxane mytomicin regimen has over a 90% positive response. Now certainly that doesn't mean it's going to cure me, it just means that I have a 90% chance of it slowing or killing it for a time. Caris Dx has a website, check them out

    Molecular vs Cellular Profiling
    A clinical trial of the Caris Diagnostics (Caris Dx) in Phoenix.

    http://cancerfocus.org/forum/showthread.php?t=3167

    Molecular vs Cellular Profiling

    Targeted drugs are specifically designed to block one or more critical pathways involved in cancer-cell growth and metastases. The development of these therapies stem from advances in molecular biology that have permitted the identification of qualitative and quantitative differences in gene expression between cancer cells and normal cells.

    The new agents range from antibodies to small molecules. The interaction of the antibody or drug with its target inhibits pathways that are essential for cell proliferation or metastasis or activates pathways that culminate in cell death (apoptosis). Since these targets are usually specific for or overexpressed in cancer cells, the new agents generally have fewer side effects than most conventional chemotherapeutic agents.

    Testing for these pathways (molecular profiling), those which identify DNA, or RNA sequences or expression of individual genes or proteins often examine only one component of a much larger, interactive process. It doesn't matter if there is a target molecule in the cell that the targeted drug is going after. If the drug either won't "get in" in the first place or if it gets pumped out/extruded or if it gets immediately metabolized inside the cell, drug resistance is multifactorial.

    For example, the EGFR (epidermal growth factor receptor) is a protein on the surface of a cell. EGFR inhibiting drugs certainly do target specific genes, but even knowing what genes the drugs target doesn't tell you the whole story. All the EGFR mutation studies can tell us is whether or not the cells are potentially susceptible to this pathway of attack.

    It doesn't tell you if one EGFR inhibiting drug is better or worse than another which may target this pathway. There are diffferences. The drugs have to get inside the cells iin order to target anything. In different tumors, either one EGFR inhibiting drug might get in better or worse than another. And the drugs may also be inactivated at different rates, also contributing to sensitivity versus resistance.

    You can though take the advantage of profiling the entire cell to measure the interaction of the entire genome (not just one pathway or a couple of pathways). There are many pathways to altered cellular (forest) function (hence all the different "trees" which correlate in different situations).Functional profiling the whole cell measures what happens at the end (the effects on the forest), rather than the status of the individual trees.

    Cancer is a complex disease and needs to be attacked on many fronts. Improving cancer patient treatment through proper drug selection will enable oncologists to prescribe treatment more in keeping with the heterogeneity of the disease. The biologies are very different from patient to patient and the response to given drugs is very different.

    You might have to test for the 15 or 20 gene mutations that may be involved in determining sensitivity/resistance to a given drug (that's 15 to 20 tests). Because if you miss just one, that might be the one which continues cancer growth.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Cute baby!
    Your baby is precious! Such a great smile.

    I do hope they will find exactly the medication your husband needs to do the trick.

    *hugs*
    Gail
  • Brenda3.16
    Brenda3.16 Member Posts: 209
    tootsie1 said:

    Cute baby!
    Your baby is precious! Such a great smile.

    I do hope they will find exactly the medication your husband needs to do the trick.

    *hugs*
    Gail

    Thanks for the information.
    Thanks for the information. It gives me another idea to present to my ONC. The baby is beautiful !! Brenda