I did 12 rounds of Folfox. I was bald at Christmas and now have thick (but short) hair. My last chemo was in April. My biggest issue was the runs. So, I am 5'8" tall and down to 103 pounds, but finally, at almost 6 months out, I too am having more control!
Having said that, I still get a monthly Sandostatin shot. But 2 months ago I was also taking 6-8 Lomotol a day and running to the toilet constantly. Now I only take 1 on occasion now. I do take an Oxicodon every night before bed, and I know that helps too. It is really for radiation pain in my tailbone and hips. Just 1 at night gives me a much better sleep. I still wear Depends most days out, but usually not at night anymore. I also have issues with fecal incontinence- the surgeon did have to cut into my sphincter muscle. I try to eat 5-6 snack size meals a day instead of big meals that my body immediately wants to dump. I am going to physical therapy at the hospital 2x a week to help build up my strength. My head sure feels heavy by night! And my socks always feel wrinkled or wet, but when I check they are fine. So, the bottom of my feet for feel weird. I think Mike and I are pretty evenly matched on our timelines. Seems like we joined this group about the same time. I had a PET in June and my follow up PET is Monday. Bumping along from Stage 4 to NED. It did not happen overnight that my body got so weak, so I expect it will take time building it back up again. But it does seem like the pendulum is slowly starting to swing in the other direction.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/30 - 4/28 Folfox. 12 rounds
June CT shows new lung Mets.