Last Friday Mark had a CT scan and today we met with Dr. Walter Urba. First he had us summarize the amazing history of Mark's cancer with an assistant. Dr. Urba specifically asked Mark to tell her about how fast these drugs worked in alleviating the pain this past March. It was literally less than two hours. We asked how that was even possible. Dr. Urba shrugged his shoulders and had no answer, then he started humming the tune to the twilight zone. Another miracle?
Next we looked at the scans. While there are still tumors in his liver, they are definitely smaller, as is the large one next to his spleen. That is great news -- the meds are doing their job! These drugs are not a cure, but they have been very successful in shrinking Mark's tumors. Eventually, the cancer figures out a way around this therapy so it is not a long term solution. Dr. Urba's initial plan is to have Mark stay on these drugs for 1-3 months before starting the immunotherapy drugs. Dr. Urba will meet with Dr. Curti in the next few days to discuss which immunotherapy drugs to use in the next round of treatments and when he thinks we should start. We'll know more in a few days. Mark has almost no side effects with these drugs, so for now we can continue with life as normal -- maybe even do a bit more travel!
Thank you for your thoughts and prayers!!
Tuesday, July 23, 2019
Thursday, April 4, 2019
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!
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!
Friday, March 29, 2019
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.
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.
Friday, March 22, 2019
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!
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!
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