Moving Forward

This past Monday we met with Dr. Walter Urba.  He was amazed with how quickly Mark responded to the Tafinlar and Mekinist! He is about to retire and in his entire career he has never seen anyone respond that quickly. Mark continues to feel better than he has in months! The pain is almost totally gone. The side effects are minimal, so Mark is back to life, almost as though there is nothing to be concerned about.  I must say that it is much easier to deal with 'cancer' when there is no pain. We have accepted this new reality and are feeling much more at peace and hopeful.

The plan is to stay on Tafinlar and Mekinist for two months so the tumors will continue to shrink.  We get to continue with our planned travel for the next 2 months.  Another CT scan will be done in early June followed by a visit with Dr. Urba on the 10th.  His current recommendation is to move to a protocol that he hopes will eradicate the cancer cells.  We had hopes that Ketruda had done that.  The new treatment will be infusions about every 3 weeks of Opdivo (like Ketruda but from a different manufacturer) along with Yervoy, which Mark has not used.  In studies the combination has been more successful in durability than either of them individually.  The down-side is that the combination is more toxic.  When reading the possible side-effects if sounds awful, but then it was the same with the Ketruda, and Mark's side-effect were again minimal.  So, there is no need to fret.  We simply won't know how he reacts until he is on the treatments.  They could be serious enough, though, that we will need to stay close to home until we see how he responds.  

So...we are moving forward with faith, a great doctor, contingency plans and living life to the fullest right now! 

Amazingly Fast

Saturday the 23rd I flew home instead of going on a cruise with my granddaughters, Katie and Aimee, because the cancer pain was so great. The prior week had gone from Tylenol to Vicodin with several sleep deprived nights due to increased pain. Friday night I couldn't sleep through the night even with two Vicodin every 6 hours. Saturday on the flight home I was feeling so much pain after only 4 hours of Vicodin that I could not sit still but had to walk around the plane.

Tyler and Kelsey kindly met me at the airport with our van and a pad in the back so that I could lay down on the way home. When we got home the Tafinlar was there. I took my first two pills at about 8 PM and a couple of hours later went to bed. I awoke at about 1:30 am and remembered that I should have taken my Vicodin at 11 pm, but I didn't feel that bad so I went back to sleep, awoke again at 2:30 and took them just so I would sleep through the rest of the night, pain free. Those were the last pain pills I needed. The pain was gone within hours!!! Sunday I was a bit fatigued but pain free.

The rest of the week I have felt only moments of very mild pain and have increased in energy and clarity. As bad as the week was last week this week has been equally wonderful and progressively better with an amazingly quick start! We have used these drugs before (Tafinlar and Mekinist) but I was totally amazed at how quickly the pain went away.

We will meet with Dr. Urba Monday to determine next steps and a longer term strategy.

Thank you again for your care, concern and faithful prayers.

The Culprit has been Found

An upper GI a week ago showed no ulcer - which is what we were hoping for.  This past Monday, March 18, Mark had a CT scan and met with Dr. Urba immediately afterwards.  He had been in his office watching it live.  After visiting for a bit, he indicated that the scan did not look good.  He showed us multiple spots in both sides of Mark's liver, some as large as 1 inch in diameter.  Another tumor was found on the pancreas which is likely what is causing the pain.  Each time Mark eats he has intense pain about an hour afterwards when the food reaches his stomach.  The enlarged stomach evidently puts pressure on the tumor.  

Dr. Urba went back to the CT scan in December to see if they missed something, but again found no evidence of tumors.  They must have been too small to see on a CT, but Mark felt it.  

Wednesday we flew to CA to visit Mark's family.  The pain continued to increase with no relief using extra-strength Tylenol.  Wednesday night he slept no more than 2 hours.  By morning he was exhausted, in intense pain, and feeling trapped.  He texted Dr. Urba who encouraged Mark to try the Vicodin again.  He had a negative reaction to it a few nights ago so he was apprehensive. This time he responded well and had some needed relief.  Because of the intense pain, Dr. Urba felt it best to shrink the tumors as fast as possible.  He prescribed Mekinist and Tafinlar, the targeted medicine that shrunk the tumors so well early on.  They will be delivered tomorrow. Once the tumors are smaller we can determine which course of action to take next.  Keytruda worked well in getting rid of all the tumors and keeping them away for several years, but we now know that it will not be a long-term cure.  There are other options, though, which we will learn more about.  

Obviously, this is not the news we wanted, and it has been tough!  But we are accepting our new reality with hope. Ultimately, we trust in our loving Father in Heaven who knows what is best for us and our family.

With appreciation for all of your love and support! 

The Investigation Continues

The pain in the abdomen decreased for a while in December.  After the first of the year the pain continued to increase in intensity, but would still come and go, although never going away completely.  Several weeks ago, it became much more severe. What is causing it?!  Last Tuesday Mark had an ultrasound to determine if there was a hernia but nothing was revealed that was out of the ordinary.  After consultation with our doctor and oncologist, we believe it may be an adhesion possibly caused by scar tissue from the surgery in September 2016 to remove the tumor in the adrenal gland.  That was a 7-hour surgery so certainly could have caused some drying out of organs, as well as creating scar tissue.  Dr. Urba has ordered another CT Scan and this week we will contact a gastrointestinal specialist who has been recommended to us.  The pain has been enough to keep him from sleeping well even with over the counter pain killers.  It sometimes causes nausea and today he noticed that he had pain after eating.  Certain positions hurt more than others.  So...on we go with more possible complications from the cancer, BUT as far as we know, there are still NO active cancer tumors!  We'll take it!!