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!!!
Monday, October 28, 2019
Monday, September 30, 2019
First Double-Immunotherapy Infusion
We're at the Providence Cancer Infusion Center just hanging out while Mark gets his first infusion of
Nivolumab (Opdivo) and Ipilimumab (Yervoy). Opdivo takes 30 minutes and Yervoy takes 90 minutes, plus blood draws, doc appointment, set up, waiting time, etc. It will be about a 4 1/2 hour routine every three weeks. (Not bad!)
Dr. Urba reviewed the PET scan with us which showed that all of the tumors are resolved, but that doesn't mean that there are no cancer cells. It takes millions of cancer cells to form a tumor. There can be 100,00 cancer cells in an area, but not show up on a scan. We know from past experience that each time Mark has gone off the medications, the cancer cells spread and grow quickly.
The medications that Mark has been on for the past several months, Mekinist and Taflinlar, have done a fantastic job of shrinking the tumors, but these meds will not eradicate all of the cancerous cells. Having less cells to fight may give these new medications a better chance of a complete and durable response.
Mark will have 4 treatments with both drugs, every 3 weeks, and then will continue with the Nivolumab for a total of 2 years. Last time we had one year of immunotherapy which was not durable, but did shrink and keep the tumors away for a year. We are hopeful that this regiment will do the job and finish off the cancer. But if not, we will continue playing "whack a mole" every time the cancer returns. Hey, it's been 7 1/2 years already, and life has been good, so we can continue playing that game, as well.
Nivolumab (Opdivo) and Ipilimumab (Yervoy). Opdivo takes 30 minutes and Yervoy takes 90 minutes, plus blood draws, doc appointment, set up, waiting time, etc. It will be about a 4 1/2 hour routine every three weeks. (Not bad!)
Dr. Urba reviewed the PET scan with us which showed that all of the tumors are resolved, but that doesn't mean that there are no cancer cells. It takes millions of cancer cells to form a tumor. There can be 100,00 cancer cells in an area, but not show up on a scan. We know from past experience that each time Mark has gone off the medications, the cancer cells spread and grow quickly.
The medications that Mark has been on for the past several months, Mekinist and Taflinlar, have done a fantastic job of shrinking the tumors, but these meds will not eradicate all of the cancerous cells. Having less cells to fight may give these new medications a better chance of a complete and durable response.
Mark will have 4 treatments with both drugs, every 3 weeks, and then will continue with the Nivolumab for a total of 2 years. Last time we had one year of immunotherapy which was not durable, but did shrink and keep the tumors away for a year. We are hopeful that this regiment will do the job and finish off the cancer. But if not, we will continue playing "whack a mole" every time the cancer returns. Hey, it's been 7 1/2 years already, and life has been good, so we can continue playing that game, as well.
Tuesday, July 23, 2019
Medicine and Miracles
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!!
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!!
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!
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