Today Grandma Lian, Grandpa Sandy, Grammie, Mom and Ali accompanied Britt to her doctor visit. We came with our list of questions mostly around the stem cell transplant since no new tests has been run since our last visit (except blood and urine tests). We were hoping to be able to discuss further with both Dr. Furst and Dr. Kafaja but Dr. Furst was out of town this week.
Dr. Kafaja reassured us that our goal with the chemo is to soften the lungs and skin. We have already see improvement in her skin. She advised that ultimately what we would like to see is an increase in Britt’s lung function by December. She also advised that although we should be prepared and be able to make a well informed decision (if needed), stem cell was a possible alternative. We really hope to see enough of an increase in lung function to not have to go this route.
Not all questions could be answered at this time. What we decided on was to continue with the next two Cytoxan treatments in November, rerun the CT scan and PFTs in early December, do one more Cytoxan treatment in late December and reassess the situation in early January. At that time we will decide where we are going next.
Britt is starting to show signs of pitting in her finger tips. Dr. Kafaja prescribed her Nitrobit (topical treatment for her fingers). This will increase blood flow to the finger tips. She is to do daily hand soaks, protect finger tips with Shea butter and treat with Nitrobit. She is also prescribing her to do physical therapy 3 times a week on her hands (to strengthen them and work on straightening out the fingers).
She will be continuing on with all other medications. Still working on decreasing the Prednisone by 1mg. every three weeks. At this time, she is down to 3mg. daily. The first week of decreasing the dosage, results in stiff, sore joints. But Britt did advise that decreasing by 1 mg. each time was much more manageable then dropping 2.5 mg. each time. Blood pressure is to be monitored several times a week.
Ali had some of her own questions for Dr. Kafaja that she wanted to discuss by herself. Dr. Kafaja was very accommodating and took some time to talk with her. Thank you Dr. Kafaja!!! She is always so patient and very supportive when explaining details to Britt’s entourage and letting everyone ask questions.
Because Britt’s white cell count was still pretty high, Dr. Kafaja is going to increase her dosage to 1350mg. on Friday. Dr. Kafaja advised that she is gauging the dose based on her decrease in white blood cell count. Currently it is at about 6.2, she would like to get it closer to 4 to ensure we are getting the most benefits out of the medication.
