Thanks, Mike. Have trouble with the “been on” part...I like to think of myself as at the beginning of the journey. I have been dealing with hand-foot effects of Xeloda for years. The Oxi is bringing this to a new leve. Short-term disability for a person with lung mets on palliative chemo who needs insurance to pay for treatment is really not a possibility. Nor is it psychologically or economically feasible for me to stop working. I am not willing to be defined by this disease; when that happens—when the disease and its treatment become my life, rather than a surmountable impediment to living in *defiance* of my CRC, I will perhaps change my view. But to date, I have muscled through, and hope to continue. Hence, looking for recommendations.
Got a balaclava, gloves and a good jacket. Looking for ways to prevent the “cold sensitivity” and neuropathy from occurring, and ways to tone it down.
Good luck, and I sincerely hope you have no reoccurance.
NHMike wrote:I live and work in NH so I feel your pain. I think that it's more cold sensitivity than neuropathy but I get arthritic feelings in my fingers and hands when I wake up which might be related. I work inside but still have to scrape ice and snow and have to walk around when it is quite cold outside. I use a balaclava and ski goggles when it is cold and windy and try not to leave any skin exposed. I also bought an electric kettle because I need water and drinks slightly above room temperature. It is a royal pain (or brutal would be a better word).
I have seen many of our members suffer from the Oxaliplatin with a variety of symptoms, some of them quite long-lasting. I'm just trying to get through winter. There are times when I seriously want to stop this stuff. I do often feel like a WIMP on this stuff. I think that it might be easier if you don't have to work (as in short-term disability or retired), but many of us don't have that as a realistic option.
You have been on a long, tough journey.
DX Aug. 2013 Resection 09/13.
08/14 CT : .7 CM pulmonary nodule--& multiple nodules.
03/15 15 dendritic cell vaccine-monthly
05/16 begin 3000 MG Xeloda & Avastin
2/2017: Port installed. Begin Folfiri and Avastin
8/2017: Xeloda, Avastin and Iranotican. 3-wk cycle.
2-6-18: small pulmonary embolim—some growth in one pulmonary tumor. Start Xarelto.
2-8-18 : Change of chemo: Xeloda with Oxaliplatin no avastin.
9/2018: Tumor growth. Begin Stivarga.