Bill's visit to Moffit on Wednesday, August 17th went really well. Bill felt great and he looked great. The GVHD meds were continued for another month. Would you believe three days after everything changed. Bill was very weak, tired and extremely fatigued. It was a chore for him to get up out of bed. We waited a few days to see if things would get better before calling Moffitt to let them know what was going on and get their opinion on what we should do. Laura (our PA), who saw Bill 5 days earlier could not believe the change. After discussing all of the symptoms and observations it was decided we would see the local oncologist and have blood work done. The blood work came back normal for all levels with the exception of Bill's Thyroid function, it was off the chart. The reading came back > 100, which is the highest level the local lab could result. The newest aliment to add to the list is Hyprothyroidism.
Quoted from Wikipedia "Hypothyroidism is a condition in which the thyroid gland does not make enough thyroid hormone. (a deficiency of thyroid hormone)".
Another sample was taken and sent to an outside lab for a more accurate reading. Bill was started on Levothyroxine 25MCG. It takes about six weeks to see measurable results from the thyroid replacement therapy, so the wait begins.
Quoted from Wikipedia "Levothyroxine, also L-thyroxine, synthetic T4, or 3,5,3',5'-tetraiodo-L-thyronine, is a synthetic form of thyroxine (thyroid hormone), used as a hormone replacement for patients with thyroid problems".
The second blood test came back showing a level of 133. The normal high end of the range is 4.5. As the doctor said "This is an extreme case of hypothyoridism". The next step was to see an Endocrinologist locally to make sure everything else is OK. Dr. Go was very good and thorough in his physical examination. One side of the Thyroid gland is enlarged, so the doctor ordered an ultrasound of the Thyroid. The medication was changed to Levoxyl 100MCG and a blood test order was written for six weeks.
One cannot even imagine what Bill is going through. One day feeling great and then boom, knocked off your feet. Today he still does not have energy to do anything. He was on the Levothyroxine at 25MCG's for 15 days and now on the Levoxyl at 100MCG's for a week. I hope and pray that he will see some relief from this latest road bump real soon.
On a positive note, we did make it to the BMTinfonet.org conference "Celebrating a Second Chance at Life Symposium". The conference took place in Atlanta, GA this year. Our flight out of Orlando was delayed 2 1/2 hours due to mechanical problems with the plane. Sitting in the airport was more than Bill could handle with his current situation. If the plane did not board when it did we were at the point of going home and calling off the trip. I was very proud of Bill for making the trip and attending all the sessions on Saturday and Sunday. It was a very difficult and long trip for him, but he did it. We did learn a few things at the conference and we also met and spoke with other transplant survivors, some that were 20 and 30 years post transplant. One of the many things that we learned is that problems related to the transplant can be with you for a long time.
My favorite session was "ask the expert". Eight renowned physicians from the best Bone Marrow Transplant hospitals in the country were on the podium answering questions from the audience. Claudio Anasetti, MD who chairs the Department of Blood and Marrow Transplantation at Moffitt Cancer Center was one of the eight. Of course I had to ask a few questions and was very pleased with the responses. One question we had related to Sookie getting her immunizations. Bill cannot be around children that have recently been vaccinated with live virus'. Did that hold true for dogs that are recently vaccinated with live virus'. It turns out, since the virus' are ones that humans don't contract, it is OK for Sookie to get her shots and for Bill to be around her.
I attended a networking session for caregivers and found it interesting to hear what other caregivers had to say. Some of them were very candid about their feelings, enough said there. One women, whose daughter is a survivor, talked about mucositis and how her daughter did not get it. Although this is not proven, it is noteworthy. The women is a dental hygienist and had her daughter using prescription strength fluoride toothpaste before and during the transplant. She is convinced the prescription strength fluoride toothpaste prevented her daughter from getting mucositis.
In several of the sessions we learned that the pesticides (chemo) and drugs that are used pre and post transplant can wreck havoc on the thyroid, hence the current road bump.
I would like to introduce everyone to my wife in high school. (Yes we had a make believe family with kids and all). Kris and I have been friends for over 30 years and the friendship has been valued and rewarding. Kris, who lives just outside of Atlanta, was our driver, tour guide extraordinaire from the airport to the hotel and then a few short trips around Atlanta and then back to the airport on Sunday, and finally an all around GOOD FRIEND. We had a very nice diner with her and her mother. Kris, thank you for all your kindness and help!!!
On Thursday, September 15 we had our most recent visit to Moffitt. Everything went well with the appointments, all the levels look good from a transplant perspective, just need to wait the six weeks for the thyroid medicine to kick in. The two medications that Bill is taking for GVHD have been reduced to once a day, down from twice a day. (Entocort (budesonide) and Beclomethasone).
When we got home I reviewed the blood work for the last few months and noticed that the Platelet count has gone from 212 on June 30th down to 88 on September 15th. Although his level is still in the safe range, we need to understand what could be causing the drop. During the August visit the doctor mentioned the drop to 108, but was not overly concerned.
Day 313 and counting!!!!!
