The doctor asked about checking Todd's iron levels, because iron can build up in the organs after numerous blood transfusions causing damage. He normally treats iron build-up with oral chelation therapy. I told him what his BMT doctor told us: no they don't check iron levels nor treat high levels with chelation therapy because it was "controversial" in its effectiveness. The local oncologist was surprised to hear this. I explained that I think they thought it was mostly a secondary issue that was small in comparison to transplant problems. I did come across a great a talk given by Dr Azra Raza. DR Raza, Video 2. This video is the most comphrensive, but the other 3 are very short and also informative. I'm convinced enough to ask more about it and request his iron levels be checked.
The next morning, Tuesday,Todd didn't look or feel as good as he normally does after a transfusion. He had no pink color and no energy. I called off work the day before not knowing how he would be feeling. He got up and took a shower. I was in the kitchen with our eldest daughter home for spring break when I heard something fall. I yelled out if he was ok and when I didn't hear anything, I went running into the bathroom and found him laying on a towel outside the shower. I asked if he had fallen, but he said no, that he caught himself when he got light headed and tried to lay down on the floor before he did fall. I covered him up and started to dry him off with the towel and helped him into a chair. We got him dry and dressed and back into bed. It was so scary. He got up later and finished shaving but by that evening he still didn't feel well.
I called the Dayton Cancer Center who had clinic after-care hours around 6:00 pm. They suggested we run him in to see the doctor on call. He wasn't running a fever at the time, but his blood pressure was 114/60. We went in and saw one of his oncologist's associates. They checked his blood counts and found the counts were about the same as Monday. So, he didn't need a transfusion but the doctor could tell he looked pale. He asked how Todd got MDS; he said he was technically too young to have it! That he must have been exposed to something. He asked if he played a lot of golf, because some golfers exposed to chemicals on the green could be affected. He said no. He worked long hours for most of his career and didn't have time for much golf. He asked if he had ever smoked, because they know for sure that Benzene exposure found in cigarettes and exposure to cigarette smoke or gas products can bring on MDS and AML. Todd never smoked and didn't think he was exposed to cigarette smoke overly. This question is a rabbit hole that Todd finds irritating now. He doesn't know what would have caused the MDS, just like the doctors. I had known benzene exposure was an environmental cause, but we never could find any relation. He finds this question annoying now. Someone, somewhere has to be exploring the correlations and causes. Sounds like a good research study: to enroll people with MDS and AML, especially those with the IDH1 and IDH2 mutations, in a study where environmental exposures could be polled. Benzene can be measured in the blood stream but must be done shortly after exposure. Some kind of correlation may be established. Todd worked in the automobile industry along with two other patients we met while at Cleveland Clinic; one was a mechanic and the other was a general manager of a dealership. We were wondering if there was any correlation there, but one was a smoker, so it is hard to say. Just thoughts...
They ended up giving him IV fluids the next morning, Wednesday, and sent him home.
He was supposed to go to Cleveland Clinic for treatment and to see his BMT doctor on Friday, March 20, but after we got up at 5:00 am, he just didn't feel like it. I called and cancelled his appointments and we went into the Dayton Cancer Center instead They ran a CBC and his hemoglobin was above the threshold so we went home.
By Friday night, he still wasn't feeling well. So, I took his temperature and noticed it was previously 101.9. I was irate. I asked him when he had this fever and why he didn't tell me! He laughed at me as I stuck the thermometer back into his mouth. We didn't have any Tylenol in the house, so he took an Excedrin Migraine tablet instead without telling me! He was still running a slight fever of 100.6. So I warned him how serious this was and he agreed. So I kept an eye on him and we agreed that since he had a sustained low grade fever for over 24 hours, that we would get up in the morning and go to the ER.
When I called the doctor's office regarding his fever, they told us that they were open today for the Come Home Clinic and got us into them Cancer Center at 12:15 to run the blood cultures and urinalysis and see the doctor on call instead of having to go to the ER. We were relieved. After collecting the samples and cultures we saw a different oncologist in the practice. His fever was at normal then, but since his white counts were so low, they decided to put him on additional antibiotics: 7 days of IV antibiotics (Vancomycin), oral antibiotics and IV fluids. He slept most of the day Saturday and went back in on Sunday for the IVs. I wondered why they didn't put him on an anti-fungal instead, which is the standard drug additions from what I've read. http://www.uptodate.com/contents/treatment-of-neutropenic-fever-syndromes-in-adults-with-hematologic-malignancies-and-hematopoietic-stem-cell-transplant-recipients-high-risk-patients
Monday, we had the appointment schedule to see Dr Stein at Memorial Sloan Kettering, so he would have to resume The IV treatments after we return.
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