Not eligible for clinical trials, looking for other options - conventional or alternative

serenity101
serenity101 Member Posts: 82
in Colorectal Cancer #1

Have done:

FOLFOX + Avastin (until Allergic reaction)

5FU + Avastin (until CEA made a big jump)

FOLFOX + Avastin with desensitization (until platelets wouldn't come back up after holding treatments for a while and tumors started growing)

Irinotecan @ reduced dose due to gilbert's syndrome + Erbitux (until new metastasis showed up)

Stivarga - 75% dose (until I became jaundiced)

FOLFOX + Avastin with desensitization (retried, but had significant tumor growth and platelets dropped again)

 

Dr. is suggesting trying Vectibux + capecitabine next, with the possibiliy of embolization or removal of spleen when that quits working to hopefully improve my platelets enough to qualify for trials (could do spleen now, but at the moment he thinks we should try Vectibux + capecitabine first)

Resection of liver metastases is not an option due to the number and location of tumors in both lobes of liver.

 

Anyone have thoughts of what else might be helpful? Dr. is ok with continuing to provide care if I choose other options, including alternative care.  

 

Thanks,

Serenity

 

 

 

 

«1

Comments

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #2
    I am in a similar boat. Have

    I am in a similar boat. Have done all the standard therapies except stivarga over the past 8 1/2 years. I just completed 5 rounds od vectibix irinotecan and xeloda and did a scan. Results next week to see how that works. Then possibly y90 and or cyberknife to the larger tumors. Has your doctor looked into all trials. There are a lot out there.

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #3
    Sorry for your issues.

    The only thing I can think of is a chemo sensitivity test where there take some of the cancer cells and they try single or combination chemo directly on the cells. I was gonna do it myself, but did not need it. The company is called: naturaltherapeutics.com

    Wish you luck,

    Laz

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #4
    Admiration

    I admire your strength to continue onward. I know that I would probably give it one, maybe two more shots and then let nature takes its course. 

    I will keep you (and Jeff) in my prayers as always. 

    May you soon find something that can control these beasts. 

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #5
    Why are you not eligible for clinical trials?

    There are a number of trials going on right now that might be of use to you (just my uneducated opinion).  So I'm wondering why your doc thinks trials are out.

  • northa914
    northa914 Member Posts: 100
    #6
    Supplements for low platelets

    I used Rocheway Papaya Leaf Extract (purchased on Amazon, they also have other brands) and one tablespoon twice per day of organic cold pressed sesame seed oil for low platelets caused by FOLFIRINOX treatments.  In my case, my platelets returned to normal in one week.  The only place I've been able to find the sesame oil is Whole Foods, and the brand is Napa Valley Naturals.  If you look on Amazon you can find other brands of this particular type of cold pressed oil.  The grocery store has expeller pressed and toasted sesame oil, but my naturopath specifically recommended the organic cold pressed.  If you don't like the taste of the oil, you can add it to your diet by using it in dressings or to cook food.  I was okay with the taste, but had a juice chaser close by get rid of the oily feel left in my mouth.  Papaya leaf extract is claimed to also help your immune system and boost killer T-cells according to information I read from the manufacturers.  I don't know if these claims are true, but I do know that using the two (extract and oil) did help my platelet count.

    Hope this helps!

     

  • serenity101
    serenity101 Member Posts: 82
    #7
    janderson1964 said:

    I am in a similar boat. Have

    I am in a similar boat. Have done all the standard therapies except stivarga over the past 8 1/2 years. I just completed 5 rounds od vectibix irinotecan and xeloda and did a scan. Results next week to see how that works. Then possibly y90 and or cyberknife to the larger tumors. Has your doctor looked into all trials. There are a lot out there.

    trials

    My doctor wanted me to try and get into a pd-l1 trial even though they weren't having them at my clinic, but my platelets and bilirubin were off so I didn't qualify.

    I may look more into radiation based therapies now that my other options are dwindling.

  • serenity101
    serenity101 Member Posts: 82
    #8
    northa914 said:

    Supplements for low platelets

    I used Rocheway Papaya Leaf Extract (purchased on Amazon, they also have other brands) and one tablespoon twice per day of organic cold pressed sesame seed oil for low platelets caused by FOLFIRINOX treatments.  In my case, my platelets returned to normal in one week.  The only place I've been able to find the sesame oil is Whole Foods, and the brand is Napa Valley Naturals.  If you look on Amazon you can find other brands of this particular type of cold pressed oil.  The grocery store has expeller pressed and toasted sesame oil, but my naturopath specifically recommended the organic cold pressed.  If you don't like the taste of the oil, you can add it to your diet by using it in dressings or to cook food.  I was okay with the taste, but had a juice chaser close by get rid of the oily feel left in my mouth.  Papaya leaf extract is claimed to also help your immune system and boost killer T-cells according to information I read from the manufacturers.  I don't know if these claims are true, but I do know that using the two (extract and oil) did help my platelet count.

    Hope this helps!

     

    I will look into these

    I will look into these. I hadn't heard of them before. If I could get my platelets to go up without surgery I would be very happy!

  • serenity101
    serenity101 Member Posts: 82
    #9
    annalexandria said:

    Why are you not eligible for clinical trials?

    There are a number of trials going on right now that might be of use to you (just my uneducated opinion).  So I'm wondering why your doc thinks trials are out.

    eligibility

    All of the clinical trials I have seen require a platelet count of at least 100,000, and right now my platelets are only 51,000. They have mostly been under 100,000 since shortly after I started chemo.

  • carrieh
    carrieh Member Posts: 146 Member
    #10
    serenity101 said:

    I will look into these

    I will look into these. I hadn't heard of them before. If I could get my platelets to go up without surgery I would be very happy!

    I sent you a PM about what Im

    I sent you a PM about what Im going to try out. Best of luck,

    Carrie

  • gfpiv
    gfpiv Member Posts: 59 Member
    #11
    Mitomycin-C

    I have heard that some use Mitomycin-C with 5-FU or Xeloda for treating CRC.  You may want to Google that combo.  I'm not  sure the results would be expected to be dramatic, and not sure if your onc or insurance would deny it, but I hear M-C is relatively well-tolerated and not "overly" expensive.

  • serenity101
    serenity101 Member Posts: 82
    #12
    janderson1964 said:

    I am in a similar boat. Have

    I am in a similar boat. Have done all the standard therapies except stivarga over the past 8 1/2 years. I just completed 5 rounds od vectibix irinotecan and xeloda and did a scan. Results next week to see how that works. Then possibly y90 and or cyberknife to the larger tumors. Has your doctor looked into all trials. There are a lot out there.

    scans

    I hope your scans show good things happening. I don't know how everyone can stand waiting for their scan results. I usually get my results from the doctor the same day, so I only have to stress from when they schedule my scan until when they do it. Waiting for the results too would be excrutiating.

  • serenity101
    serenity101 Member Posts: 82
    #13
    lp1964 said:

    Sorry for your issues.

    The only thing I can think of is a chemo sensitivity test where there take some of the cancer cells and they try single or combination chemo directly on the cells. I was gonna do it myself, but did not need it. The company is called: naturaltherapeutics.com

    Wish you luck,

    Laz

    rationaltherapeutics?

    When I searched for Natural Therapeutics I came up with a massage place. Rational Therapeutics looks like it offers what you are talking about. It seems like a logical concept. Thanks for the information. I wonder if the doctor could get a tumor sample when they work on my spleen or if I would need an additional surgery.

     

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #14
    serenity101 said:

    rationaltherapeutics?

    When I searched for Natural Therapeutics I came up with a massage place. Rational Therapeutics looks like it offers what you are talking about. It seems like a logical concept. Thanks for the information. I wonder if the doctor could get a tumor sample when they work on my spleen or if I would need an additional surgery.

     

    Sorry for the misspell.

    You could ask. The oncologist at that lab is very famous and incredibly nice. They will send you a kit for biopsy. The test is not cheap, but insurance may cover some of it.

    Laz

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #15
    serenity101 said:

    I will look into these

    I will look into these. I hadn't heard of them before. If I could get my platelets to go up without surgery I would be very happy!

    While in tx, I used an herbal remedy

    called ashgawhanda, to get my white blood cell count to improve.  This was on the advice of my naturopath.  There are some studies that suggest it might be good for platelets as well (and my counts did go up rapidly, although maybe not because of the herb, hard to say).  It's an herb from the Ayurvedic/Indian tradition.

    It might be worth visiting a reputable naturopath to talk to them about possible natural approaches to the problem.

    There are some trials out there that are looking pretty good, so I hope you can get to the point of being able to try one!

    (and if you do, I would suggest contacting Maia at the Colon Club...she's an amazing source of info on clinical trials and seems to always be very willing to help people find some possible matches).

  • serenity101
    serenity101 Member Posts: 82
    #16
    carrieh said:

    I sent you a PM about what Im

    I sent you a PM about what Im going to try out. Best of luck,

    Carrie

    PM

    Hi Carrie,

    There are no messages in my inbox, so it would be great if you tried sending it again.

    Serenity

  • serenity101
    serenity101 Member Posts: 82
    #17
    Trubrit said:

    Admiration

    I admire your strength to continue onward. I know that I would probably give it one, maybe two more shots and then let nature takes its course. 

    I will keep you (and Jeff) in my prayers as always. 

    May you soon find something that can control these beasts. 

    strength

    Actually, I'm kind of a wimp. I've just been very lucky not to have had too many terrible "quality of life" reducing side effects compared to so many here.

  • serenity101
    serenity101 Member Posts: 82
    #18
    gfpiv said:

    Mitomycin-C

    I have heard that some use Mitomycin-C with 5-FU or Xeloda for treating CRC.  You may want to Google that combo.  I'm not  sure the results would be expected to be dramatic, and not sure if your onc or insurance would deny it, but I hear M-C is relatively well-tolerated and not "overly" expensive.

    mitomycin-c

    This is not a drug my doctor has discussed with me, so I will bring it up at my next appointment. Thanks

  • serenity101
    serenity101 Member Posts: 82
    #19
    annalexandria said:

    While in tx, I used an herbal remedy

    called ashgawhanda, to get my white blood cell count to improve.  This was on the advice of my naturopath.  There are some studies that suggest it might be good for platelets as well (and my counts did go up rapidly, although maybe not because of the herb, hard to say).  It's an herb from the Ayurvedic/Indian tradition.

    It might be worth visiting a reputable naturopath to talk to them about possible natural approaches to the problem.

    There are some trials out there that are looking pretty good, so I hope you can get to the point of being able to try one!

    (and if you do, I would suggest contacting Maia at the Colon Club...she's an amazing source of info on clinical trials and seems to always be very willing to help people find some possible matches).

    naturopath

    I will check out ashgawhanda. Do you have any suggestions on how to find a reputable naturopath?

    If I get to the point of probably being eligible for trials, I will look up Maia.

    Thanks,

    Serenity

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #20
    serenity101 said:

    naturopath

    I will check out ashgawhanda. Do you have any suggestions on how to find a reputable naturopath?

    If I get to the point of probably being eligible for trials, I will look up Maia.

    Thanks,

    Serenity

    I will ask my naturopath

    and see what she suggests. We are lucky in Seattle to have a major naturopathic university that produces doctors like mine...she has a BS and a 4 year naturopathic doctor degree, so eight years of pretty hardcore education under her belt. Do you mind sharing what state you're in? That might help her to make a better suggestion for you.

  • serenity101
    serenity101 Member Posts: 82
    #21
    annalexandria said:

    I will ask my naturopath

    and see what she suggests. We are lucky in Seattle to have a major naturopathic university that produces doctors like mine...she has a BS and a 4 year naturopathic doctor degree, so eight years of pretty hardcore education under her belt. Do you mind sharing what state you're in? That might help her to make a better suggestion for you.

    Iowa / Minnesota

    I live near the center of the border between Minnesota and Iowa.

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