Last week Mark met with an endocrinologist who indicated that his thyroid and testosterone levels are off because of the inflamed Pituitary Gland. With appropriate medications, these levels will likely go back to normal. Dr. Hopkins is taking the dose of Prednisone gradually down, but it is likely that Mark will have to take a low dose of steroids for the rest of his life as the irritation to the adrenal gland by Ipilimumab almost always causes permanent Adrenal Insufficiency. By the first of the year we should know if that is the case.
Today we met with Dr. Hopkins again. Mark has done amazingly well coming off of the Prednisone. He has occasional dizziness and nausea, but it's getting better every day. He will be down to 10 mg a day by next week. He will stay on 5-10 mg/day for a week or so and then transition to a low dose of Hydrocortisone until lab work is done to see if his adrenal gland is producing cortisol.
We also met with the assistant to our cardiologist last week. She scheduled a Cardioversion for November 14th if his heart was still out of rhythm, but earlier this week it went back to normal rate and rhythm, so that won't happen tomorrow. Yea! And how did he know that his heart was back in rhythm? Mark bought a new Apple watch, used it to do an ECG, sent the results to the cardiologist who responded that Mark was back in sinus rhythm. How cool is that?! He is also off of one of three heart meds, Metoprolol. Mark has so many medications right now! He created a spreadsheet to keep track of what he is taking, how much and when to take them.
What would we do without modern medicine?!! Actually, we'd both be gone. I would have died in childbirth back in 1979 and Mark's melanoma in 1990 would likely have taken him.
Life is good and we are blessed!
Introduction
Late February of 2012 Mark was diagnosed with stage 4 Metastatic Melanoma Cancer. This is written for our family and friends who have so caringly expressed a desire to know of the current situation. We so appreciate the love and support that has been shown to us and we lovingly empathize with and pray for many of you that have had or are currently going through trials of your own. In love, hope and faith, Mark and Ane
Wednesday, November 13, 2019
Sunday, November 3, 2019
One Thing to Another...
Friday evening Mark noticed that his heart was beating extra fast. At first he wasn't too concerned, but it continued throughout the evening and returned Saturday morning. Time to take action! He texted Dr. Urba who encouraged him to go to the Emergency Room. Mark was there from noon to four and was given a small dose of Metoprolol and released. It did nothing, so he returned to the ER a few hours later. This time he was given intravenous meds which did reduce the speed quickly, but was not sustained. He was released with prescriptions to thin the blood and regulate the rhythm, as well as to slow it down. Those drugs have helped but he still has to take it easy. If he does anything other than sit, his heart rate quickly jumps up to 120+. So...he sits at his computer and works -- that is not uncommon for him! And he avoids stairs. In the morning we will set up an appointment with a cardiologist.
One thing leads to another and another and another! Cancer led to the combination Immunotherapy, which led to an inflamed Pituitary gland, which led to steroids, which led to increased heart rate and intermittent A-Fib, which led to three more drugs, which leads too...?? (hopefully a normal heart rate, a normal Pituitary gland and NO cancer!!!)
But it's all good - we can do this!! 😊
One thing leads to another and another and another! Cancer led to the combination Immunotherapy, which led to an inflamed Pituitary gland, which led to steroids, which led to increased heart rate and intermittent A-Fib, which led to three more drugs, which leads too...?? (hopefully a normal heart rate, a normal Pituitary gland and NO cancer!!!)
But it's all good - we can do this!! 😊
Wednesday, October 30, 2019
How can that happen so fast?
When we got back home from the MRI, doctor visit and drug store I took my first round of anti-nausea, steroids and super pain killers. After 6 hours, I expected the pain and nausea back, but it never came back. Where did it go? The doctors thought I would need pain killers for days, maybe longer. I slept through the night, with only super mild occasional reminders of the pain I previously had. The steroids kicked in and I had a very energetic and productive day. All is well! it is amazing to go from feeling so bad to feeling so much better in such a short amount of time!
I'll be on the steroids for a while as they gradually taper off, but for now I feel quite normal and off to the races:-).
Thanks again to doctors, medical inventors, faith and prayers!
I'll be on the steroids for a while as they gradually taper off, but for now I feel quite normal and off to the races:-).
Thanks again to doctors, medical inventors, faith and prayers!
Monday, October 28, 2019
2nd Infusion = Enlarged Pituitary Gland
Mark's 2nd Infusion with Yervoy and Opdivo was one week ago - Monday, October 21st. The first infusion had limited side effects -- rashes that can be controlled with prescription creams, and some fatigue. But, this time was not so easy. The day after this infusion Mark had some dizzy spells and nausea. On Wednesday a headache came on that would not go away. Initially, Tylenol helped but as the week wore on, the pain became more intense, especially at night. Fatigue became more pronounced and the nausea was almost continual. The nausea would subside when he would lie down, but the headache would intensify. He could never get comfortable and away from some kind of discomfort. Saturday evening he had some confusion - not recognizing the names of some of our grandchildren. He felt like his brain just wouldn't connect the dots - it felt blank. Sunday evening he came home from meetings in the evening totally spent, with his head pounding. If he would sneeze or bend down to pick up something, he felt like his head would explode. He slept for a few hours, but by early Monday morning (today), he was feeling trapped with pain, nausea and exhaustion. Mark texted Dr. Urba with more details of his symptoms. Dr. Urba immediately ordered an MRI. Within a half-hour Mark got a call that he could come in at 10:15 am. It was 9:40 at the time so we left immediately.
After the MRI we had an appointment with Dr. Urba and his assistant, Amy. They pulled up the results of the scan and showed us that the pituitary gland which is normally quite small, was enlarged. This is one of the side effects that can happen and one that needs to be caught early, as it can cause irreversible issues. The Pituitary gland is the master gland that governs all other glands and hormones in the body. Mark will go on Prednisone, a steroid to decrease inflammation, for several weeks to possibly a month to get the gland back to normal. Infusions will be on hold until this situation is rectified. Mark was also given prescription pain and nausea medications. Shortly after taking his first dose of each, he felt better than he has felt in days. Hallelujah!
Again we are thankful to have an amazing doctor who is so responsive, for the miracle of modern medicine, and for your faith, prayers and loving thoughts!!!
After the MRI we had an appointment with Dr. Urba and his assistant, Amy. They pulled up the results of the scan and showed us that the pituitary gland which is normally quite small, was enlarged. This is one of the side effects that can happen and one that needs to be caught early, as it can cause irreversible issues. The Pituitary gland is the master gland that governs all other glands and hormones in the body. Mark will go on Prednisone, a steroid to decrease inflammation, for several weeks to possibly a month to get the gland back to normal. Infusions will be on hold until this situation is rectified. Mark was also given prescription pain and nausea medications. Shortly after taking his first dose of each, he felt better than he has felt in days. Hallelujah!
Again we are thankful to have an amazing doctor who is so responsive, for the miracle of modern medicine, and for your faith, prayers and loving thoughts!!!
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