Jul 28, 2013 - 9:43 am
You guys aren't going to believe this but Steve is experiencing an unusual problem. I have mentioned in my recent posts that he has been experiencing extreme fatigue since taking a chemo break from May 14 - June 27. I noticed it when we were in Vegas. He seemed to sleep a lot. It got progressively worse to the point of sleeping almost constantly.
Example of a typical day
Go to bed t 10pm and sleep all night.
Up at 9am for breakfast. Back to bed and sleep till noon.
Lunch and watch tv until 2 pm then asleep until 5 pm.
On a good day he may be able to stay up until 10 but may also require an evening nap.
Social situations exhaust him. When we spend time at my parents house, he will be asleep on the couch for 85% of the visit. Despite kids running around and making noise. He will wander away from the dinner table in the middle of a meal to sleep!
Keep in mind this problem began when he was not taking chemo. Since starting Folfox, the fatigue has been no better and no worse. He has liver tumors which will cause fatigue, but this seems like something more. When he was hospitalized in Feb for the spontaneous hematoma, his onc prescribed iron - ferrous gluconate 300 mg T.I.D. His ferritin level has never been tested. Two weeks ago I checked off ferritin and B12 on his chemo requisition. (yes, I am a bit of a rebel). At chemo I inquired about these levels and was shocked to hear that the ferritin which should be in the high 200 was actually 1300. B12 was 1200 (should be no higher than 600). He stopped taking the iron. I could tell by the nurses reactions that these levels were exceptionally high. I googled iron overload and the most common symptom his extreme fatigue. It is not a simple case of stopping the supplement and the level returning to normal. Once the iron is there it has to be removed through blood letting or chelating medications. The PDN says we will monitor the level for a month. Steve doesn't have a month to spare on just waiting to see what happens. We want to do things. I want rid of this iron immediately. We have an onc app on Tuesday and I plan to push for blood transfusions. I am worried she will insist on waiting.
Has anyone had this problem? Any advice? Do you think it's the iron causing the fatigue or the liver problems? Do other people with extensive liver mets experience fatigue to this degree?