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DiscussionAnyone diagnosed with Primary Central Nervous System (CNS) Lymphoma?
Blood Cancers & Disorders | Last Active: May 9 3:45am | Replies (105)Comment receiving replies
Replies to "@noelnemeth Just a clarifying note. I live in a Cleveland suburb so finding and treating the..."
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@noelnemeth I'd also like to add that I believe a key thing that helped me was getting aerobic exercise during the hospital stay. I'd walk round and round my ward eventually walking all over the hospital with a trailing IV train. Of course, you're bed bound during the chemo infusions but otherwise I was allowed to be mobile and on my own. Oddly there were times I was told I was clearing the chemo out of my body too fast and they threatened to tie me to the bed if I didn't stop the wandering. But I feel this exercise was a vitally important part of my treatment/recovery. I'm hoping this belief I have in exercise is true and that it's some small advice that could benefit others. Another thing I would like to add is I had a blood access port (an IV port) installed early may 2015 at a nurse's recommendation. I think that was a life saver as I was having trouble with the IV needles in my veins. That greatly helped getting the Chemo to where it needed to go. And I still have that port now 11 years later. Because the history of this disease has a high relapse rate I never had the port removed. I suppose chalk that one up to superstition and now laziness having the port removed. But 11 years with a port is a long time and I have to get it flushed every 6 weeks or so and there is always a risk of infection every time the port is accessed. So you have to be careful there.