Postby Ron50 » Fri Aug 19, 2016 7:38 pm
Hi Tammy,
One of the things that I have found about cancer is that surviving survival is not easy. I am coming up for 19 years cancer free ex stage3c into six nodes. During that time I have suffered constantly from side effects of the cancer and chemo. I suffered acute pancreatitis when a gall stone blocked off my pancreatic duct. I lost my gall bladder and like many suffered bile salt mal absorption , commonly called bile salt diahorreah . Cholestramine was my saviour for years. Then I was diagnosed with protein urea. My protein loss rose to 3grams a day. Three kidney biopsies shed no light on the cause. The biopsies did not relate to any known kidney disease. One of my early nephs decided it was minimal change disease of the kidneys and treated me with 75 mg daily of prednisone for two years with taper. It very nearly resulted in adrenal insufficiency. What it did result in was type two diabetes, osteo-penia , moderate to severe motor sensory peripheral neuropathy of the feet, legs and left hand. My lower back pain was out of control so my gp tried me on a series of meds. Lyrica , Neurontin , endep , norspan and fentanyl patches. None helped and I found the patches too scary to continue. He then put me on Targin ,oxycodone // naloxone. after two years I was on 80/40 mg daily. The opiate induced constipation started from the beginning and never relented. With each 12hrly dose of targin I had two take two dulcolax and two coloxyl. I asked my nephrologist about laxative dependency. He just said that the second highest presctiption numbers he writes are for laxatives. Eventually the oxy became ineffective. I refused to go higher and spent 34 weeks getting off them. Now my protein loss has risen to 7+ grams a day and I have to take cyclosporine twice a day to stay alive. Unfortunately of late I have been suffering from severe oedema. A couple of months back my legs and lungs filled with fluid. I went thru ultrasounds of heart , liver, pancreas and kidneys. There were some problems but none were serious enough to cause the oedema. I was put on a litre a day fluid restrictions and double diuretics. I have been able to control the oedema but the low fluid has resulted in constipation again. It is a vicious cycle that never ends. I am using coloxyl to help keep things moving but I am ever conscious of blocking up and my medical kit always has an adequate supply of dulcolax , coloxyl and microlax enemas . I have found that fibre is not your friend with any type of medication induce constipation and without fluid to shift things I have to be very careful of what I eat. fruit would be ideal but with types two diabetes again I have to be careful. Like I said surviving survival really is not easy there are a lot of costs to staying alive and in the end It comes down to doing whatever you need to do to keep going as unpleasant and onerous as some of those things are. The other thing I have realised is that doctors don't see you every day so they don't know how their advice effects your life. My neph recently asked me to take 5 mg of prednisone daily till further notice. It had the effect he desired , my elevated liver functions went from the red to the black. He suspected mild to moderate auto immune hepatitis, he was right but after six weeks my blood sugars went from 5.8 to over twelve. I stopped taking the prednisone and after six weeks my blood sugars have slowly come down into the sevens. This post is not designed to scare any survivors , none of this may happen to you but if it does you need to be prepared mentally to fight on . Believe me in the past 19 years it would have been very easy to give up, hugs to all ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo