Reasons to Decline Prednisone: Balance

Many of you may have heard of the infamous Ketchup Fight 2k16, in which I decided that I was no longer able to abide by the GVHD diet 100%. The diet involved canned fruit, plain meat (think turkey lunch meat), white bread, and plain spaghetti. You probably think you’ve had plain spaghetti before, but I’m talking P L A I N. As in no butter, no olive oil. Sticky clumpy “spaghetti” globs (if someone ever fed you that, go back and ask them why they hate you). After a while, I was allowed to add low seasoning chicken tenders (bless, right?) but without ketchup. Meanwhile, I was stuck in a never ending world of not being able to consume enough calories to sustain myself. I’d feel like I was chewing sod all day only to come up with a calorie count of 800. Not fun.

So, after awhile, I began to bargain. Ketchup with the chicken tenders, chicken noodle soup with vegetable broth, peanut butter on my white bread. Some people were horrified that I would risk my health for taste, but at this point food had become more than food for me. I felt inhuman, deprived of such a basic part of living. So I ate ketchup. I’m incredibly fortunate to have a wonderful oncologist who understands that quality of life is important.

So that brings me to today. I am having GVHD problems in my mouth and potentially eyes and liver (test results pending). I also have been newly diagnosed with psoriasis (how embarrassing is it that my first thought was ‘Kim K has that!’) My quality of life is still higher than it was on prednisone. The doctor I saw in clinic today (who is not my primary oncologist) wants to put me back on prednisone, but I am insisting that we try something else first. Ruxolitinib? Imatinib? There are options. I just can’t.

I never thought I would be someone arguing with doctors about my treatment plan, but I already have lifelong side effects from the year of prednisone (mostly osteopenia and potentially AVN) and I have to live in this body for the rest of my life. I’m also not a fan of the huge face. That balance is important to me. I take my meds every day, go to clinic appointments twice a month, see specialists and do mouth rinses and sleep nine hours and work hard in physical therapy. I’m also going to eat ketchup and do a summer internship in New York and keep my normal face, thanks. Even if that makes me crazy.

PS everyone should put cream cheese in their omelettes!!! Who knew



About Brooke Vittimberga

I have cancer...oops
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3 Responses to Reasons to Decline Prednisone: Balance

  1. You’ve been at this long enough to know what’s best for you, both physically and emotionally. Best to you Brooke! Excited to hear you’re heading East this summer!


  2. Juliana says:

    You’re absolutely right, there are definite alternatives to prednisone. Stanford BMT been investigating ibrutinib as a cGVHD treatmentment with clinically meaningful responses, and imatinib is also worth a try.


  3. I totally agree with you. Not a fan of prednisone either. I still have gvhd in my mouth and manage it with betamethasone mouth wash. Good days & bad days but no steroid face. Have a great Summer.


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