Nancy had a pulmonary angiogram performed last Wednesday because she had been experiencing some pain just above her heart at night.   The doctors didn’t think she had a blood clot (since she is on Lovanox) but wanted to be certain.  They did not find a blood clot, but did discover a small nodule in her upper left lung.  They told us not to be concerned because once they get the blood work results and confer with Dr. Koenig, they will begin chemotherapy treatment that will attack the liver tumor, the new one in the lung and the dermatomy0stis – all at the same time.  Nancy is also now using a patch behind her ear (the same that they use for motion sickness on cruises) and it seems to be helping with the nausea.  In the meantime, we wait for the blood work results.  We are both anxious to begin the treatments so those tumors can begin to shrink and/or dissolve.  – Kevin

After weeks of continuous nausea, and with escalating liver enzyme counts, the doctors have taken Nancy off the Cytoxan and had another CT Scan performed on her liver.  Dr. Ward called late last night to tell us that the tumor has grown to 6.3cm x 3.4cm but he didn’t see any other material changes.  The way he phrased it was “nothing has fallen apart”.  Nancy will see  Dr. Koenig (considered the expert on Dermatomyositis) and confer on what course to take next.  There is another chemotherapy drug out there that treats both diseases, but it also affects the liver.  Since her liver counts are already too high, they will confer and see what will be the best route to take.   Nancy is feeling somewhat better in that her nausea usually only appears now around 6PM – instead of all day.  Her muscle (CK) counts are down to 75 (from 6500) so we are wondering why she still has the pain in her arms, neck, chest and tops of her thighs.  She remains to me to be a “miracle” and is an inspiration to us all.  Thank you again for all your concern and acts of kindness.  – Kevin

Ever since they reduced Nancy’s methypredisone and chemo, she has been feeling poorly.  She is experiencing nausea, chills and just a general feeling of not feeling well.  The doctors are trying to get an appointment for Nancy with a Dr. Koenig who is a specialist in the one disease she has, namely dermatomysitis.  Christmas Eve day and night she was so sick she only got out of bed for a few minutes and then went right back.  She is on a number of anti-nausea drugs, namely Zofran, Reglin and Lorazapan, but none seem to be a permanent solution.  Since her liver counts are extremely high and her white blood count is low, we’re not sure what the next step will be.  We are seeing the doctors at Huntsman again on Tuesday, Jan. 3rd and still anticipating a call back this afternoon.  Thanks again for your thoughts, prayers, dinners, etc.  -  Kevin

Even though Nancy had a flareup yesterday (her throat closed causing her to choke  just trying to swallow water) her CK count was down to 131 (from a high of 6,500) which puts her in the “normal range”.  Because of this, the doctors are reducing her Prednisone  from 24 mg/day down to 16mg/day and if she is doing OK down to 12mg/day by next week.  The sooner she gets off the Prednisone, the less likely are her chances  to pick up any more infections, or diseases.  Also, we would like to have the pain  disappear.  They are keeping her on the large doses of Morphine until things settle down.  She is tolerating the Cytoxan so far and we are happy for that result.  Nancy remains to have a positive attitude and is a great example to all of us.  Thanks again for all your acts of kindness and concern.  – Kevin