Drug Trial Did Not Work, Back To FOLFOX (any tips on Neuropathy?) and Maybe Stivarga
Trial drugs did not work, so out of the study.
Not many options for me right now. We are considering circling back to FOLFOX since I have been off it over 6 years and it may slow things down for a bit, though not sure how long I can be on it. I had neuropathy the first time so could not have 12 sessions with the Oxil part. Figure maybe I can tolerate 3-4 sessions. I recall people mentioning some supplements or other things to help with it, but did not see them. I will do another search.
After FOLFOX will go on Stivarga.
Keeping an eye out for other studies and also doing some more genome testing (waiting for results) to see if there has been any changes in my cancer that open up other treatments.
It is closing in on 7 years since my first surgery in a couple of weeks. The fun just never ends ;)
Comments
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What supplements are you taking currently?
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Have Reshi Mushrooms on order. Had not taken them - they were out of stock for awhile and and I had not looked while I was in the trial. Also tumeric pills/teas. I have an Integrative Medicine Specialist at MSK, but I started with that doctor after I was on FOLFOX. I am going to drop her a note. It is very cool, she is up on combinations and what is okay/not okay depending on the chemo/drugs. When I was on FOLFORI she gave me a head's up on the medical marijuana card I was applying for - that CBD could actually make some side effects worse, and I should use THC.
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I also read THC is better.
Great you pulled in an integrative MD. Post rec's from her if you can.
Check your vitD levels. Needed in all cells.
VitC is probably top of list (in my case anyway). If you can take it. VitC is a wonderful thing.
Melatonin is great for the side effects also and synergizes chemo.
Electrolyte balance is also important.
I had very mild neuropathy, just a little tingling in fingertips. Cold and other things didn't bother me at all while on folfox.
I am on the ADAPT protocol now. I have found what works best for me with not having HFS is IVC and lotion with coconut oil mixed with vitE oil. I have never had HFS and been on chemo for over two years.
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Sorry your trial didn’t work New. Hopefully some other trial will come along soon. I will be praying for you every step of the way. Keep strong!
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I am really sorry the trial did not work out for you.
Last year (2020) I received 12 FOLFOX plus Avastin treatments. The last Oxy tx I had prior to these was in 2017. My neuropathy is still with me and is annoying as heck, but at least I am still here. I’ve lost a great deal of the sensation in both my hands and feet, but luckily I am still pretty functional. I did not do or take anything special for it during my treatments. Someone suggested that putting ice on your hands and feet helps with prevention. That sounded like torture to me, and I’ve had enough torture. 😛 In hindsight I wish I would have tried it. Also I have heard if the infusion is run slower that helps. I have no verification on if this is true, but it might be worth a shot.
The FOLFOX kept the cancer at bay for 5 months, where upon it showed up in my skull bone. Radiation and FOLFIRI treated that. Last tx next week. Scan in November was good. Praying Feb scan is just as good.
Best of luck to you, you are always an inspiration.
p
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Hey sorry to hear that the trial didn't work.
My dad didn't have much Neuropathy while he was on 5-Fu but he religiously used "Wheat Grass Juice", we grow wheatgrass at home and he daily drink that till today. It's a little tedious process but I think it helped him. We used this technique https://www.youtube.com/watch?v=J3C5Mt-QAUY
I think they sell wheatgrass powder on Amazon but not sure of the effectiveness.
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Really sorry you are off the trial. I hope the reason for that is something better happens. Hang in there. Thinking of you . Take care
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Sorry about the neuropathy :( My doctor figures I may be able to get a few rounds in before we will have to stop things. The ice does sound painful, especially remember with cold sensitivity. But I can see how that possibly could help. Sort of a variation on the ice caps to perhaps stop hair loss. I think it is supposed to slow the flow into the head and hair follicles by slowing blood flow. Off the top of my head, I do not recall seeing mets to the extremities mentioned all these years. So perhaps it is a low risk - albeit not fun - thing to try. I believe there are cooling socks and gloves, so I will look into that.
When I was on FOLFORI, running the infusion slower helped me feel a lot better. Not great, but better. The whole brain fog and general feeling of sickness. We kept on increasing the time.
Keeping you in my thoughts for your last treatment and a great scan in February.
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I will check on amazon and also look for other sources to see if I can find it. I will check in with my integrative MD at MSK to see what she knows. In the past she has recommended sources that are better from her experience where she thought products were more consistent and accurately labelled. Such as when I was looking for CBD gummies or certain supplements.
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I am sorry your trial didnt work.
You do have a chance tgat Folfox will work. Our former oncologist said that drugs can be used again after 2 years.
If you want google "methadone antitumor effect". I always hoped that a drug like methadone could help my dad. Check with your doctor, get info on it and maybe it will be something for you. Who knows when they will actually start the study in Germany for it. They wanted to start 2020.
That your doctor is doing the genome testing is good. Check if Tumor mutation burden, TMB, is included. If that is high, you can qualify for immunotherapy like keytruda. If TMB is high, it works in people who are not MSI.
I wish you good luck!
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I have had neuropathy now for nigh on nine years.
One thing I have noticed, when I have consumed allot of sugar, my neuropathy is accentuated. Something to do with the sugars attaching to the end of the nerves.
I am sure you already keep an eye on diet, you are a wise man. I can pinpoint foods that will accentuate the neuropathy, some of which are foods that I like, so I know what is coming after a good old chocolate or cake binge.
I remember when you first joined the forum, replying to my long list of side effects. You are a forum staple, my friend. May you find the next trail, and stay around for a very long time.
Tru
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