clinical trial adomet (SAMe) helps heal folfocked liver damage UPDATE not phase 3 study

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Comments

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    westie66 said:

    SAM-e
    Hi: I'm from the gallbladder cancer discussion group. Although I had my gallbladder, its tumour, and part of my liver removed last April (2010), and then did a round of chemotherapy using cisplatin and gemiticibine (Gemzar) here in Canada, what needs to go now are 6 peritoneum nodules (cancerous). My oncologist views this kind of like colon cancer. I am not eligible for the peritoneum removal surgery nor for the intraperitoneal chemo (only one place does it in Canada and they haven't had any success with gallbladder cancer patients), but my oncologist is going to try the dreaded oxaliplatin/irenotecan/5FU etc. chemotherapy done both through an IV every 2 weeks and a 46 hr infusion. My question is this: how much SAM-e does one take to help with neuropathy? I purchased a bottle of 100 mg SAM-e today. On the label it says take 3 tablets 3 times a day and that SAM-e was good for fibromyelga (which in many ways is similar to neuropathy in my mind). But someone above mentioned you take 4 tablets a day (but the number of mg was not given). I did not have a problem with neuropathy with the cisplatin/gemitibine mix (none at all actually) but I think oxaliplatin is much more of a 'beast'! I start chemo May 17. Someone on the gallbladder discussion group took L-glutonate to help with the neuropathy. Any ideas on this?
    Thanks!
    Cheryl

    Hi Cheryl
    Thanks for visiting the colorectal world here, sorry you had the need too.

    The SAMe study posted initially was just for liver damage. Only liver damage and folfox.

    That said SAMe is an interesting product with lots of infomation on the net available.
    Its not been publicially discussed on these forums before so I raised it for discussion purposes.

    Now its called co-incidence, so the fact my neuropathy improved while on is very likely that. Please just read the studies if your interested, and discuss with your doctor and support team.

    The studies are not stage 3 clinical, not double blind studies with a large sample. I draw your attention to these caveats.

    I wish you only the very very best of health and luck in your treatment.
    cheers,
    Pete
  • westie66
    westie66 Member Posts: 642

    Hi Cheryl
    Thanks for visiting the colorectal world here, sorry you had the need too.

    The SAMe study posted initially was just for liver damage. Only liver damage and folfox.

    That said SAMe is an interesting product with lots of infomation on the net available.
    Its not been publicially discussed on these forums before so I raised it for discussion purposes.

    Now its called co-incidence, so the fact my neuropathy improved while on is very likely that. Please just read the studies if your interested, and discuss with your doctor and support team.

    The studies are not stage 3 clinical, not double blind studies with a large sample. I draw your attention to these caveats.

    I wish you only the very very best of health and luck in your treatment.
    cheers,
    Pete

    SAMe
    Hi: Thanks, Pete. I will do that. At this point I want to try anything so I don't get that neuropathy thing! It doesn't sound good to me. I didn't have any problems with cisplatin but oxaliplatin seems a different beast. And the irenotecan! Good luck tomorrow.
    Cheryl
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    westie66 said:

    SAMe
    Hi: Thanks, Pete. I will do that. At this point I want to try anything so I don't get that neuropathy thing! It doesn't sound good to me. I didn't have any problems with cisplatin but oxaliplatin seems a different beast. And the irenotecan! Good luck tomorrow.
    Cheryl

    Westie66, Cheryl, where in
    Westie66, Cheryl, where in Canada are you?? I'm in Ontario.
  • Kenny H.
    Kenny H. Member Posts: 502 Member
    smokeyjoe said:

    Westie66, Cheryl, where in
    Westie66, Cheryl, where in Canada are you?? I'm in Ontario.

    Thanks for the info
    Thanks for the info Pete.
    Currently taking the milk thistle, will look into finding some adament. What dosage do you take?
    Having some nuerapthy issues myself. Hands and feet really numb (drop things & hard to do some tasks. Button shirt ect) hope it helps this to but mainly need to get my liver count back down.

    After 12 rounds of poison ended I thought things would get easier. Guess with time it will I pray.
    Onc never mentioned none of these to help either. =-(
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    Kenny H. said:

    Thanks for the info
    Thanks for the info Pete.
    Currently taking the milk thistle, will look into finding some adament. What dosage do you take?
    Having some nuerapthy issues myself. Hands and feet really numb (drop things & hard to do some tasks. Button shirt ect) hope it helps this to but mainly need to get my liver count back down.

    After 12 rounds of poison ended I thought things would get easier. Guess with time it will I pray.
    Onc never mentioned none of these to help either. =-(

    dear kenny
    if i could swear on this board i would, i so hate to hear about survivors nasty side effects, i even read my own posts and feel sorry for pete. i am sorry to hear about dropping things. it makes me sick to my stomach that we have made it through folfox and are left with these sides, did you get cal/mag infusions ? not that it matters now really, damage been done, just curious. now the study to minimise the peripheral neuropathy been out for a while, still people get what i was dished up with.

    we have the power to insist about the very best care in the most passionate way, for us we can insist to onc about sides. the issue is some of the remedies are natural and the doctors want have a bar of them, no trials, no adaquate proof to offset mitagation risk, so we just sit, sleep, walk and blooody well suffer. i have certainly been desparate enough to try most alt things with some science backing.

    if all our onc's cared like say lenz, maybe we would be better off. like his advice milk thistle or b complex for 5fu many maybe better off.

    just get the best caring and professional advice you can re your sides. if they are as important to you

    i started to get worried when yes the penis started to get a bitnumb, ten i really started researching. mind you made sex last alot longer. hey, every dark cloud has a silver linning.

    i have noticed my balance maybe an issue, if my eyes are open i am ok. if i put a towel get dry the few remaing hairs well i almost topple over like a bag of shiiit. i have heard of some here having balance issues.

    sorry to rave,

    its not the dex its the morphine,

    I forgot how good it is,

    hugs,
    pete
  • westie66
    westie66 Member Posts: 642
    smokeyjoe said:

    Westie66, Cheryl, where in
    Westie66, Cheryl, where in Canada are you?? I'm in Ontario.

    Ontario
    Hi Smokeyjoe: I am in London, Ontario. Where are you?
    Cheryl
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    westie66 said:

    Ontario
    Hi Smokeyjoe: I am in London, Ontario. Where are you?
    Cheryl

    South end of Lake
    South end of Lake Simcoe..... north of Toronto. Maglets is from Ont. too... Nice to meet you!!! P.s. Smokeyjoe is my kitties name in the photo. I see you have a cute little Westie. Take care Leena.
  • westie66
    westie66 Member Posts: 642
    smokeyjoe said:

    South end of Lake
    South end of Lake Simcoe..... north of Toronto. Maglets is from Ont. too... Nice to meet you!!! P.s. Smokeyjoe is my kitties name in the photo. I see you have a cute little Westie. Take care Leena.

    Ontario
    HI again: Not too far away! Where do you get your treatments - in Toronto? Did you have the oxiliplatin/irentocen/5FU treatment? If so, how did it go for you? I think with colon cancer (stage III) the oxiliplatin costs are covered but not for me. Where is "Maglets" from in Ontario? Yes, Charlotte is a cutie and my joy.
    Cheryl
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    updated title based on feedback and aftermore research warning
    hi all interested adoment, samE

    I am glad i am using this post chemo.

    consider this comment from my naturopath

    UPDATE discussed SAMe adoment with naturopath 1 thersa, it may stimulate the liver detox which may prematurely get folfox out of your earlier, which may reduce its effectivess. this is just a comment that needs to be included. also changed the title from fixes to helps heal, which is more accurate.

    hugs,

    pete