Back From Seattle

I made it to Seattle and back safe and sound and as usual the folks at Fred Hutchinson (FHCRC) and Seattle Cancer Care Alliance (SCCA) were fantastic. They are so professional and thorough. I am providing the following information as an update to my current health and one-year post stem cell transplant progress:

The bone marrow looks good with no signs of abnormalities and the FISH test indicates I still show no signs of the bcr-abl gene indicative of chronic myeloid leukemia. It is too early for PCR results but I am certain it will be negative as well. The skin biopsy showed no signs of skin graft versus host disease (GVHD) although the doctor said I most likely have very mild skin GVHD as indicated by some spotting on my legs and thinning of my hair.

The ophthalmologist has been seeing stem cell transplant patients for 30 years and he told me both eyes have small nodules on them but worse on the left eye. This makes sense because my tear production is very limited in the left eye. These nodules and the dryness is what is causing some issues with my eye sight. He said this was most likely caused by GVHD but now my eyes just need to be treated by keeping them moist. He has taken me off the steroid drops and ointment and has prescribed non-medicated ointment, natural tears, celluvisc, and two tablespoons flax seed oil (by mouth) every night because it helps stimulate the production of tears.

Oral Medicine confirmed the GVHD in my mouth, which continues to be very painful. The dentist has prescribed me with several new medications to treat the GVHD, including another swish and spit, a directly applied gel, and a lip balm.

After reviewing all my labs and other tests, the attending physician and the nurse held a final conference with me. He said he wants me to increase my dose of tacrolimus (immune-suppressant) and to continue it for another six months when my oncologist and I should contact the Long Term Follow-Up team again to discuss where I am at that time with regards to GVHD. He has also cut the Budesinide (for GVHD of the gut) and is tapering me over the next three months.

Two things I have to follow-up with here at home are possible osteoporosis of my spine and prostate cancer. My bone density is worse than it was at my 80-day testing when I had osteopenia in my hips. The scan hadn't been screened in detail yet but the doctor said the scan showed my spine is very close to osteoporosis levels. So I have to start taking vitamin D and calcium supplements, even though the dietitian said she believes I am getting the recommended amounts through food. The dietitian also said I need to see a physical therapist who has experience with cancer patients so we can find the right balance between much needed exercise and not losing any weight. My current body weight is 141 pounds; heading once again in the wrong direction.

As for the prostate, my results from the PSA test, used to watch for signs of prostate cancer, are a bit high. So the doctor wants me to have the test repeated during my next lab work. I have to admit being a bit nervous about this one but I also understand that elevated PSA levels can be caused by things other than the prostate gland.

So overall I am doing well. And I feel pretty good too (other than continued fatigue, mouth pain, and eye dryness). One of my biggest disappointments though is that I still have to be mindful of food safety. So still no juicy steaks and niced salad at Outback Steakhouse.