This third time to Houston's MD Anderson was supposed to be an easy run, do some blood-work, pee, check my heart via EKG and scoot on out with my chemo meds in my pocket, but life is never that easy. First off, the doctor changed the time of my appointment from a relaxed afternoon visit at 3:00 pm, to a more prompt one at 11:00 am. I got home Wednesday night from work and I had a message to see if I could be there at 9:30 am or 11:00 am. I told them this was very last minute notice, had I known, we would have planned accordingly and gone up Wednesday evening to be there early on Thursday. Fine, we had a quick dinner, came home and forced ourselves to go bed as quickly as possible so we could turn around and leave a lot earlier than we had planned, ended up being before 7:00 am.
We got there with about 15 minutes to spare, but it was a downpour and of course, the parking garage was full until we got all the way up to the topmost floor, so we got drenched just getting off the car. We then had to walk the length of the parking garage, across the street and find the entrance to the hospital about 100 yards away. Once we were in the building, we were still about another 100 yards from the correct elevator, so we marched on. We walked into the endocrine center about 10:55 am, still on time, we thought. The receptionist did not have the time change, she said my appointment was for 3:00 pm, I said "No, I was sent an email to get here early." I did not even get to sit in the lobby, was still dripping from the rain, and the nurse called me for my vitals. Of course, my blood pressure was something like 220/120. The nurse was like that is too high, what is your normal readings like. I told her last time it had been 139/84, in Austin I had read 131/75. She re-read my arm after a few minutes and it was still like 179/99. This set everything back, I was taken to the room for evaluation and the clinical study coordinator came in and said "I'll give you the meds before you go, or I will mail them, if we can't get your blood pressure down. Part of the problem is they did not have the extra large cuff, but how do they function in Texas, half the people are walking around overweight, I am certainly not an anomaly. There was a lot of back and forth, with the doctor getting involved and how else they could get a good reading. They even tried talking to the cardiac unit figuring they would have better equipment for this, but there larger cuff is tied to a tool that was down at the moment.
I was told to go give my blood, urine, and EKG then come back to see if they could find a better solution. I came back and the waiting around probably helped me to relax, as I finally gave decent readings of 119/68 and 132/72. The hesitation is because the chemo drug is known to cause hypertension so a candidate cannot have high blood pressure to do the study.
I even learned more than I expected, being part of the clinical study means I get the medicine for free without having to involve my insurance. I also learned that this medicine has been used for cancer patients for over 10 years and it works very well. Its mechanism blocks the creation of new veins where the cancer is trying to grow, halting it in its growth. I also learned this is not the BRAF mutation gene therapy I had been told about. They were trying to go this route because this medicine has been better at shrinking tumors and faster at it. It is a clinical study medicine because normally it is used on cancer patients who have wide spread cancer and this slows down the growth all over the body. The study is to show it can target a specific cancer and shrink it prior to a surgical procedure.
The doctor did not expect to be cancelled from the study, but if that were to happen another option would be to get my insurance to pay for it and we still use it outside of the clinical study, or she said a third option is to go with the BRAF gene therapy. I believe if I do the gene therapy, I have to keep taking it, while this one in the study will be a more concentrated medicine than given to those with wide spread tumors, but for a short period of time. Max amount of time I can be on it at the higher concentration is 6 cycles and each cycle is 28 days, so about 6 months.
Although I left Houston with no medicine to take, I did order a blood pressure monitor machine and have started keeping track of my personal BP daily. My first reading this morning was 141/78 with a heartbeat of 68 on right forearm. Left forearm was similar at 141/79 with a heartbeat of 68. I got home from work and sat and checked it, I got 139/81 with hb of 75 on right and 140/81 with hb of 74. I'm going to enjoy checking it throughout the day, after I walk on treadmill, after lifting weights, eating. Who knows, it gives a little insight, maybe.
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