The Meds Keep Working

Another PET scan this past Monday, August 17th, has once again revealed no tumor growth! How thankful we are!! Mark is beginning to have some side effects from the cancer medications. Joint pain seems to be the most persistent issue. Dr. Taylor acknowledged that this is common. If the pain gets too severe, the dosage can be reduced, but it will remain the same for now.  

The Adrenal Insufficiency continues to be managed with Hydrocortisone. Some days Mark feels great.  Other days he experiences extreme fatigue, nausea, and dizziness.  For the most part, he can function normally if he gets enough rest. He is a trouper and does not like to complain. When he does, I know that he is definitely not feeling well.  

We continue writing stories of our lives.  It is sweet remembering the joys and sorrows, the trials and the triumphs, and above all, the many miracles and blessings that we have been recipients of. This summer, our outdoor project has been installing zip lines for the older grand-kids and anyone else who is brave enough to try them. (There is a 500-pound limit!)  Each zip-line requires a take-off and a landing, so several platforms and towers have been erected. Building has always been play for Mark, which gives him a chance to do something that he really enjoys.  

As much as possible, we spend time with our children, their spouses, and 18 grandchildren. They bring the greatest joy. Life is good! 

Great PET

Mark had a PET scan done on the 18th of May.  Dr. Taylor texted later that day, indicating that there were no active tumors.  When Mark went to see him on the 20th, he saw the scan.  The mass that has always been in the adrenal gland area is smaller than on the previous scan, which is great news!  This has always been the problem area -- whenever tumors grow, this one grows and is the one that has caused so much pain.  Currently, it is NOT active, although there is still a mass present.  Mark will continue taking Mekinist and Taflinlar for as long as they work.  He will no longer go off of these medications.  So far, side effects have been minor.

His biggest challenge now is just figuring out how much Hydrocortisone to take daily. If he doesn't get enough, he gets dizzy, nauseous, and super fatigued.  Of course, there are side effects if he takes too much, but he is figuring it out, and life continues on as a new normal.  We are enjoying the time we have at home together, so we are not bothered much by the Corona-virus.  Our children and grandchildren bring us so much joy, and we are so grateful that they are close by!

No News is Good News

It's been two months since a post.  No news is usually good news, right?  And for us, it has been.

The prednisone has been replaced with hydrocortisone at a level that mimics the normal cortisol level needed in the body.  Because cortisol is essential for life, this medication will always be part of my daily regiment.  I wear a bracelet that states "Adrenal Insufficiency" in case of an accident.  Whenever my body is in a state of stress, extra cortisol will be required. 

Recently, I had some bleeding in my bladder.  To be sure there was no cancer present,  a cystoscopy was ordered. Some of you may be familiar with this procedure.  I was not.   As you might imagine, there is only one way to see inside the bladder without an operation.  It requires a very long camera to be inserted. The doctor told me ahead of time that there would be some pain and discomfort, but he asked me not to kick him.  I responded, "If you don't hurt me, I won't hurt you!"  He chuckled and said he was sorry, but it doesn't work that way.  Fortunately,  it didn't take very long, and he could tell me right then that there was no cancer.  Another small problem may be causing the bleeding, which has been exacerbated by the blood thinner I have been taking.  After discussing this with the heart doctor, I was able to go off all three heart medications. Yahoo!

The Tafinlar and Mekinist seem to be doing a great job of keeping the tumors from growing.  We'll know for sure next month when I have another PET scan.

There seem to be side effects of each medication.  There is currently some neuropathy in the toes, swelling of the ankles and feet, surface thrombosis, muscle aches and pains, joint stiffness, cracks in the palms of my hands, general fatigue and weakness, and lack of stamina, and now kinky hair! Still, those are a small cost for life!!

Thank you again for your kind thoughts, faith, and prayers!

Moving Down on the Meds.

Mark feels better than he has felt in months!  It was remarkable how fast the cancer drugs reduced the pain by shrinking the tumor.  His energy level has also increased so he is back to working a full day without a nap.  It has been amazing!!

Unfortunately, his body started attacking his digestive track again.  Just after our last post Mark had to go back up to 30 mg of Prednisone a day. Dr. Taylor scheduled an infusion of infliximab for Monday, the 24th of February.  It seems to be working.  Mark is back down to 15 mg/day. Dr. Taylor also took him off of the Levoxyl as Mark seems to be producing thyroid hormones again.  The antibiotic he had to be on with the high doses of Prednisone was also stopped.  

Today we meet with the heart doctor with hopes of getting off the three heart medications.  That didn't happen, but he did lower the dose of Flecainide, so it's likely that in two months he will be off all three heart meds.

So...gradually he's tapering off some of the medications.  He had so many that he had to create a spreadsheet to keep track of them all! Of course, he will stay on the cancer meds. (Those are the spendy ones!)  

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