Postby DonP » Wed Jun 20, 2018 8:39 pm
I too was scheduled for 12 cycles of FOLFOX + Avastin. The Oxi provided the expected side effects with cold sensitivity, first bite, later tingling and numbness, etc. with those effects literally gone before the start of the next cycle for cycles 1 through 9. I had gotten to the point that I was enjoying my chocolate milk shakes on the weekend prior to the start of each new cycle. My oncologist would question me on my numbness and dexterity at each visit and I had really nothing to report, except for strange pressure / clamp like sensations in my toes, particularly on my center toes on my left foot. Then, with the 9th cycle ending the sensations had spread to both feet, and my hands remained sensitive. This was more annoying than painful. Then, with the 10th, the sensations (hypersensitivity of touch in fingers and toes, plus feeling of numbness and like I was walking on balloons) hung around longer and stronger. Determined still to make all twelve, I took the 11th hoping the condition would improve. My ONC let me make that decision on my own unfortunately. That was on January 22, 2018. The conditions did not improve, but worsened and I chose to not have Oxi included with my final treatment of that regime. The neuropathy has continued to worsen since that time, and five months later I still struggle to write my name. I cannot button my shirt, and it is an adventure sometimes simply zipping or unzipping my fly if I cannot see the zipper pull. My fine motor skills are currently (hopefully still temporarily) fried. Simple stuff, like turning on a lamp, opening a bottle of water, pulling up the bedcover, etc. are quite the challenge, and often painful. I have a lot of trouble driving because of the skewed sensations in my feet. I have sat at green lights looking for the gas pedal, and done impressive burnouts unintentionally.
I have gone up the ladder with Gabapentin, taking now 1800 mg per day, the most my ONC is comfortable with. He asks me if it is helping, but frankly I don't know. As this neuropathy has progressed while I've been on it I shudder to think what it would be like if it were not, and really do not want to find out. I have began taking Palmitoylethanolamide (PEA) under the advice of a holistic doctor that is a MD at the university medical center where my cancer center is located. He and my ONC worked together on the recommendation, and after an additional loading studies show improvements in SYMPTOMS only after 1 1/2 - 2 months of this therapy. I've only been on it for three weeks so far.
I guess I've rambled on this far to make this point, please make sure your son is over communicating with his ONC. It does not always pay to be a hero and soldier on just to get the originally scheduled 12 cycles of Oxi. Oxi is highly effective at stopping tumor growth, but it has a dark side as well. I'm praying that he, along with the ONC team, find a happy medium for him and help him to full remission with zero to slight side effects.
8/17 - Dx Stage IV Sigmoid Colon, 8+ lymph nodes, Liver mets (both sides), abdml tumors
12 cycles FOLFOX + Avastin (11 w/ OXI, one w/o) ended 2/7
2/18 - near total remission
4 3 wk cycles Xeloda + Avastin
5/18 - CT shows full return of original Dx with add'l growth, add'l lymph node, new liver tumors, growth of retro-peritoneal soft tissue mass
6/18 - Began 12 cycle FOLFIRI + Avastin
Phil. 4:7 And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.