Initially Mark had about a 3-5% chance of survival. Once Mark said to Dr Urba, "That's over a 95% chance of death!" Very quickly, Dr. Urba responded, "Yes, but YOU could be the one to hit it out of the ball park!" And in many ways he has! His response to the different cancer treatments has always been incredible.
This time Mark is in the 3-5% range of patients who have the most severe side effects to the immunotherapy drug combination, Yervoy/Opdivo. He got not only the infected Pituitary gland, but also Colitis, as well as challenges with the Prednisone. Oh boy! BUT, there is a positive side to this. His immune system has reacted aggressively which means it is also likely fighting those nasty cancer cells! Of course, that's what we're hoping for -- the immune system to eradicate the cancer.
He had to stay in the hospital one more day, so he missed Thanksgiving Dinner with the family, but that's okay. We definitely didn't want to take him home until he was ready. There has been significant improvement today so the doctor is optimistic that tomorrow could be the day.
We have so much to be thankful for!!
Thursday, November 28, 2019
Tuesday, November 26, 2019
Happy to go to the Hospital
We made it through the week-end without going to the ER. Monday he had an appointment at the Providence Cancer Center. Doug L. came over and helped me get Mark into the van. He is so weak that he can't stand or even sit up. We were taken to a room with a bed (not just the recliner chair typically used at the infusion center) and IV's were started immediately. Fluids helped only a bit. He continued to be extremely weak and nauseous There was no way he was going home--we were actually happy that he was admitted to the hospital. Having him so sick at home was scary!
The doctors we are working with conferred and have determined that this is not just from coming off of the steroids too fast, although, that could have been an initial contributing factor. Now, he is dealing with another side-effect of the immunotherapy. His immune system has attacked his colon causing colitis. Not only was he having constant diarrhea, but he also was not getting the benefit from the oral medications. The doctor explained it this way. When the colon is healthy it has microscopic bumps on the surface causing the colon to have a surface area about the size of a tennis court. With colitis, the surface becomes smooth diminishing the area in which nutrients and medications are absorbed to about the size of our hospital room. Another medication, Remicade (infliximab) was given last night via IV. Today he has been able to keep food down. He will definitely be here one more night, but more likely two. Of course, it all depends on how his body responds. It would be nice to be home for Thanksgiving, but we don't want to go home until we know that he is definitely on the mend!
Before the double immunotherapy began, we had a feeling that there could be some challenging times. It is proving to be so, but we are handling it well, especially with the help and support of so many. We appreciate it, as well as all of your love and prayers!
The doctors we are working with conferred and have determined that this is not just from coming off of the steroids too fast, although, that could have been an initial contributing factor. Now, he is dealing with another side-effect of the immunotherapy. His immune system has attacked his colon causing colitis. Not only was he having constant diarrhea, but he also was not getting the benefit from the oral medications. The doctor explained it this way. When the colon is healthy it has microscopic bumps on the surface causing the colon to have a surface area about the size of a tennis court. With colitis, the surface becomes smooth diminishing the area in which nutrients and medications are absorbed to about the size of our hospital room. Another medication, Remicade (infliximab) was given last night via IV. Today he has been able to keep food down. He will definitely be here one more night, but more likely two. Of course, it all depends on how his body responds. It would be nice to be home for Thanksgiving, but we don't want to go home until we know that he is definitely on the mend!
Before the double immunotherapy began, we had a feeling that there could be some challenging times. It is proving to be so, but we are handling it well, especially with the help and support of so many. We appreciate it, as well as all of your love and prayers!
Saturday, November 23, 2019
Oh, What a Week!
Mark seemed to be coming off the Prednisone so well -- we thought he had it licked! That is, until he got to 30 mg/day. (He started at 90 mg/day which is an extremely high dose. There are side effects of being on Prednisone so that's why the rapid taper, but it can't be too fast.) Last Sunday he had extreme fatigue and stayed in bed all day. He was supposed to go down to 20 mg on Monday but was concerned. We never heard back from the endocrinologist as to what to do, so he took 20.5 mg. Monday night everything really started falling apart. During the night he had extreme nausea and diarrhea. He was so dizzy and nauseous that he ended up on the bathroom floor for 45 minutes and I couldn't get him back into bed. He couldn't keep anything down. Finally, I called 911 at 5 am for help as we didn't know what was happening. They came and checked vitals which were all fine, and indicated that these were symptoms of coming off the steroids too fast. He went back up to 30 mg on Tuesday, but that night was almost as bad. Wednesday morning we went to the cancer clinic where he got intravenous fluids for dehydration, meds for nausea and some steroids. When it was time for us to leave, Mark couldn't stand up because of the severe nausea, and I didn't want to take him home in that condition. The doctor came back in to check on him and agreed that Mark could not go home. A room was procured in the hospital and he stayed on IV's during the night which included some steroids.
Thursday morning he felt much better and by noon we were on our way home. As the day wore on he started feeling nauseous again and by night, he couldn't keep anything down including water. Friday we went back to the clinic for fluids. Before we left, he was given another intravenous dose of steroids which seemed to help. He slept well in the evening.
Saturday early morning the diarrhea and vomiting wouldn't stop so I talked to the on-call doctor. The only thing she could suggest was going to the Emergency Room. We didn't want to do that. He was exhausted and wanted to be in a comfortable bed. Eric brought over some Pedialyte and Mark was able to keep it down at least some of the time. He isn't dehydrated, but he is incredible weak and still nauseous much of the time. He is now on 30 mg of Prednisone in the morning and 30 mg. in the evening. He hasn't been out of bed all day, and feels sick whenever he is awake. Fortunately, he has been able to sleep. He hasn't eaten anything for days so he needs nourishment but for now, he would rather wait until his Monday appointment to take the next steps, as long as we can keep him hydrated. Overall, he is quite miserable!
So...if he hasn't responded to emails or texts or calls, that's why! Everything else in on hold until he feels better. We're hoping next week he will have some major improvement.
We appreciate your prayers, love and support!
Thursday morning he felt much better and by noon we were on our way home. As the day wore on he started feeling nauseous again and by night, he couldn't keep anything down including water. Friday we went back to the clinic for fluids. Before we left, he was given another intravenous dose of steroids which seemed to help. He slept well in the evening.
Saturday early morning the diarrhea and vomiting wouldn't stop so I talked to the on-call doctor. The only thing she could suggest was going to the Emergency Room. We didn't want to do that. He was exhausted and wanted to be in a comfortable bed. Eric brought over some Pedialyte and Mark was able to keep it down at least some of the time. He isn't dehydrated, but he is incredible weak and still nauseous much of the time. He is now on 30 mg of Prednisone in the morning and 30 mg. in the evening. He hasn't been out of bed all day, and feels sick whenever he is awake. Fortunately, he has been able to sleep. He hasn't eaten anything for days so he needs nourishment but for now, he would rather wait until his Monday appointment to take the next steps, as long as we can keep him hydrated. Overall, he is quite miserable!
So...if he hasn't responded to emails or texts or calls, that's why! Everything else in on hold until he feels better. We're hoping next week he will have some major improvement.
We appreciate your prayers, love and support!
Wednesday, November 13, 2019
Adrenal, Thyroid, Heart and more
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!
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!
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!! 😊
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