Hi, I am new to this group, although i have used the old site a lot in the past when i had breast cancer ( in 2004 and again in 2008). In March of last year i was diagnosed with pancreatic cancer. repeat gene testing showed an abnormalitiy in the BRCA2 gene that they had not found in 2008.
They had difficulty with the endoscopy - couldn't get a biopsy and had difficulty putting in the stent and gave me acute pancreatitis and then i had kidney failure and was in hospital for 3 weeks. Anyway, recovered from that and sent home to get better enough for surgery - Whipple's. Before that could happen ( delays because of covid) i developed intestinal blockage with vomiting and nothing staying down and spent another 2 weeks in hospital on iv fluids, taking very little by mouth. When i did finally go for my operation in June, turns out it had already spread to the liver, sot they just did a procedure to bypass the obstruction and closed me back up. Took another 2 weeks of being in hospital before i was able to take in enough to be able to go home.
A long slow road to recovery and then i started Folfirnox chemotherapy in September. that was rough, with several visits to hospital in between treatments ( problems with the line, infection, sore mouth, fungal skin rash) but the nurses were amazing and the supportive treatments were very helpful. I am now 6 weeks post the completion of my chemo ( finished mid Jan) and the oncologist is pleased with how i have responded. Tumor is possibly smaller on the CT and my CA19-9 has gone from 150 to 47. I generally feel quite well - my appetite is good, my energy levels are good and i am walking every day.
However i am bothered by neuropathy which they say is a side effect of the oxaliplatin. It feels like pins and needles, tingling and numbness in my hands and feet. At first it was only mild and would only be the first few days after chemo and be triggered by cold exposure ( like getting something out of the fridge), then by the last few cycles it was there all the time. Now it seems to be getting worse - in my feet it is from my toes up to mid shins and in my hands has extended from finger tips to wrist. It is there all the time, even when my hands and feet are warm, but is worse and becomes painful if they get cold. I am wearing socks and sometimes gloves at home and double gloves and socks if i go out ( all snow gear). it is affecting my balance esp first thing in the morning as i can't feel my feet, and fine motor movements of my hands like typing, chopping, writing. I told my oncologist and he just said that healing from nerve damage can be very erratic. it may get worse before it gets better and may take months to improve.
Anyone have any suggestions for anything they have tried that helps? I just frustrating esp since i have finished my treatment and ma otherwise pretty good.
Sorry for the long post.
Hi warriorP
I'm not a member of this group but I noticed that your post hadn't had any replies yet.
It does sound like you've had a lot to deal with over the years and the neuropathy sounds very distressing. I typed 'neuropathy' into the search bar in this group and found these posts which mention it. Although most of them are quite old you could have a look through them to see how other people coped.
I'm also going to 'tag' kevatvinegarhill into my reply as I know this is something that he suffered with. Hopefully, he's still a member of the community and will pop by to tell you about any tips for dealing with neuropathy that he found.
It would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You could copy and paste what you've written here into your profile to save you typing it out again if you wanted to.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
