Day +343: Art Fleming gave the answers…

“Oh, but I couldn’t get the questions right, -ight, -ight…”

Okay, the tagline is a bit of a misnomer but it was the only one I could think of about answers. Suggestions are welcome!

Tiffani, the NIH physician’s assistant, called to discuss my results last Friday. First the good news. My liver ultrasound, pulmonary function tests, and chest CT were all great, no indication of GVHD in either my liver or lungs. My mobility and range of motion are also good.

Slightly less good but not unexpectedly, I have mild GVHD of my eyes and skin. They recommended Restasis and Refresh Celluvisc for my eyes and a prescription topical steroid cream for my skin. Only a small area on the back of my neck appears to be affected. The other skin biopsy of my itchy red bumps was consistent with insect bites, and they suggested I contact my local dermatologist for that.

My bone density scan showed osteopenia, the precursor to osteoporosis. They recommended a calcium supplement plus a year on Fosamax or similar drug.

My endoscopy showed inflammation of the esophagus but no indication of GVHD in that area; however, some cells near my duodenum are suggestive of GVHD. Coupled with the gastroparesis (slow stomach emptying) revealed by my gastric emptying study and my problems with nausea, they rated my gut GVHD as severe. I questioned this assessment, as the symptoms might be caused by my Vidaza treatments rather than GVHD. They recommended a short term treatment with Reglan. Since I tried this recently with little benefit, and a couple of doctors have recommended taking it only if I could not eat without (due to the potential for severe neurological side effects), I’m electing to skip it. They also suggested eating more frequent, lower fat and lower fiber meals. The reduced fat may be a problem when I’m struggling to maintain my weight – ice cream is a mainstay of my diet.

Based on scarring and strictures, my vaginal GVHD was also rated severe. They prescribed a steroid cream and a dilator.

The dental results and recommendations are interesting. The biopsy is suggestive of GVHD. My left parotid gland is not functioning and the rest of my salivary glands are working at reduced capacity, the result of which is severe xerostomia (dry mouth). They want me to use a daily flouride treatment to protect my enamel. They also want me to return so they can biopsy one of my minor salivary glands for further information. More interestingly (for me anyway), they want me to participate in another of their studies in which they are treating Sjogrens patients with acupuncture to stimulate their salivary glands. So far, 4 of the 5 patients showed improvement to their dry mouth after only three treatments. I’m returning to NIH Monday to have the biopsy and my first acupuncture treatment. I’ll be their first GVHD patient in the study. I’ll probably be returning every two weeks for a total of six treatments. If the acupuncture is unsuccessful, they suggest trying Salagen or similar drug.

That’s about it – my doctors and I will receive full written reports within a few weeks. I’m very happy that I participated in this research and am extremely impressed with the folks at NIH. I was pleasantly surprised to get an email from my Hopkins transplant doctor, Dr. Jones, today. Dr. Pavletic, the NIH doctor, had already called and spoken with him about my results. He asked if I’m feeling okay or if I need to come in sooner than my scheduled one year checkup on December 1. He’s considering suspending/ending my Vidaza treatments because they could be exacerbating the GVHD. We’ll talk about it more when I see him.

This is such a long post, I’ll end it here and put my other updates in a new one. Anyone wanting more detailed info about the NIH study, please email me privately.

One Comment:

  1. Andy, Thomas, and John

    Karen, you have been through so much and are still standing strong! I admire your strength! Love and prayers,
    Andy

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