So what a day yesterday!!! The infusion was suppose to start at 8 am. We were told to get there early so Nicole and I arrived at 7:30 pm. We were sent to the lab to get blood drawn and an IV put in for the infusion. The lab tech tried twice to start an IV in my left arm. I asked for the left arm because last time I got an IV in my right arm in really hurt when it was left in all day. The lab tech, Julie, asked the Charge Nurse, Stephanie, to start the IV. Stephanie was able to start the IV in my right hand. Luckily, it did not hurt and was fine all day.
Nicole and I went back to the Clinic to meet with the doctor to get the final "GO AHEAD" for the infusion. We were told that Dr. Grossman was suppose to be in a meeting so we would be seen by his Nurse Practioner, Julie, and then Dr. Grossman would see me right before the infusion would start. It took some time for Julie to make it to our room. When she came in, she began to talk to me about what would happen with infusion and answer any questions. Julie then started a quick examination. Just as the examination started, Dr. Grossman walked in. Dr. Grossman said "Hi" and made small talk and then just sat quietly for a moment. Nicole and I could both tell he was acting a bit strange and seemed to have something more to say. Dr. Grossman then asked, "Did anyone discuss your scans with you?" I said "No." Dr. Grossman sighed and said, "They found a spot on your liver during your last CT scan. I looked at your scan in February and could see it on that scan. It hasn't changed. It is most likely a hemangioma (Liver hemangioma (he-man-jee-O-muh) is a noncancerous (benign) mass that occurs in the liver.). I am not worried about it but the radiologist will not clear it so we can't start the infusion until we have it cleared."
Dr. Grossman then went on to explain that I would need a MRI before we could start. Dr. Grossman was a bit frustrated. Dr. Grossman said he would have Chris, the Clinical Trial Coordinator, arrange the MRI. Dr. Grossman said he hoped we could get the MRI done and still begin the treatment. Dr. Grossman said it was possible we would have to get the MRI and then wait until Friday to start the infusion. Nicole and I went back out to the waiting area until Chris told us what was happening.
Chris came out a few minutes later and was very apologetic. Chris said he was able to schedule the MRI at 2 pm and we could start the infusion at 3 pm. We said that was fine because we had a doctor's appointment with Dr. Noyes at 2 pm so we would try and flip the appointment. We called Dr. Noyes office and they said we could come down and, even though we may have to wait, they would attempt to get me in as soon as possible.
At this point, I had not had anything to eat. Nicole and I decided to go to the cafeteria at IMC, which is where Dr. Noyes has his office. I was about half way through my hamburger and fries when Chris called me. Chris said he was calling to confirm that the MRI was scheduled. Chris then said that Radiology informed him that I had to be fasting for the MRI. I told Chris ok I would just have to stop eating my lunch.
We then went over and were able to see Dr. Noyes. One thing that I have learned, and that Nicole is a PROFESSIONAL with, is bringing a simple trip to the doctor's office. I have learned this really makes a difference when they go out of there way to make allowances for you. We took them Kettle Corn and Chocolate-covered Pretzels. ( I have also learned that you can never go wrong with chocolate when it comes to nurses.)
We then headed back to Huntsman. Chris had said that it would be a good idea to be there 20-30 minutes early so we could get paperwork done and get in there a quick as possible. We arrived about 30 minutes early, filled out paperwork, and they got us right in. I did find that the liver MRI was one of the toughest scans I have done. You have to hold your breath for nearly every scan. Though it is only a few seconds each time, it doesn't allow you to relax. I was able to breath normally through one of the scans. I was tired and fell asleep for a few seconds. I learned that made the scan take longer.
We got through the scan and arrived at the infusion center right at 3 pm. They were expecting me and checked me in. Chris came running in and told them to wait until the scan was read. Chris said he would call the "Reading Room" and get them to read the scan as soon as possible. We were waiting and waiting. Lori, the nurse in the Infusion Center, came out at one point and told me that I could wait out in the waiting room or back in the infusion room. I decided, because I was working on a puzzle, that I would wait in the waiting area. Chris finally came back and said everything was fine and we could start the infusion.
Lori then came out and said it would take some time to get the medicine mixed and then it would be ready for infusion. This was the first time I heard the infusion called chemotherapy. I noticed, once in the infusion center, that the IV bag also said chemo. I realized this was serious but also realized that it was different from chemo, especially the side effects!!!
Lori explained the procedure. Lori said the infusion would take 90 minutes. Lori started the infusion and then went and printed some information about the medicine. It is called Ipilimumab. Ipilimumab (also known as MDX-010 or MDX-101) is a human monoclonal antibody intended to be used as a drug to activate the immune system. Ipilimumab is undergoing clinical trials for the treatment of melanoma. Ipilimumab results in a one-year survival rate of 47% to 51% for people with stage III or IV melanoma, which is almost double the average. Unlike chemotherapy, in which side effects become evident soon after beginning treatment, the side effects associated with ipilimumab can vary greatly, presumably because the human immune system varies from person to person. The most common side effects of ipilimumab occur in the gastrointestinal tract (such as diarrhea and inflammation of the colon) and the skin (such as rash and inflammation of the skin). Less frequently occurring side effects include hepatitis, inflammation of the pituitary gland (hypophysitis), eye inflammation (uveitis), and kidney problems (nephritis). Side effects occur in up to 84% of patients but are generally mild and treatable. Julie, the Nurse Practioner, said that if we did get the drug, we probably would not experience side effects, if any, about 2 weeks from the infusion.
Lori told us that the infusion would take 90 minutes and then they would monitor my vital signs for an hour after the infusion. The infusion started about 5 pm and we finally left Huntsman about 7:30 pm. 12 hours at Huntsman!!! I love the place but that was a little long!!!
I still had not eaten. Nicole and I went to Red Robin, which was very near Huntsman, and I finally was able to eat. We got home about 9 pm. Luckily my daughters, Mariah and Allyson, were great and took care of the younger girls. Those two have been very good through this entire experience.
I did feel a little sore before going to bed. I woke up with a sore throat and a running nose. I think that is most likely from this freakish Utah weather!!!
My loving wife, Nicole, bought me a book that I could read at Huntsman. I asked her to get me Chad Lewis's book "Surround Yourself with Greatness." I read several chapters while at Huntsman. It is a very good book. Nicole went to high school with Chad. This morning, the day after the infusion, Chad was speaking at a morningside for the Orem High Seminary at our Stake Center. Nicole, who was as tired as myself, woke up early and went to the morningside. Nicole spoke with Chad and had him sign my book. What an awesome wife!!! To top it off, she called me as I was dropping off the girls at school and told me to stop by the church and say "hi" to Chad. I was able to get there in time and say "hi" to Chad. I met Chad once before at Nicole's 20 year high school reunion. Chad was awesome and it was great to speak to him for a few minutes.
All in all, it is nice to get started and feel like I am doing something to prevent the disease from coming back or to catch it early if it comes back!!!
Nicole and I went back to the Clinic to meet with the doctor to get the final "GO AHEAD" for the infusion. We were told that Dr. Grossman was suppose to be in a meeting so we would be seen by his Nurse Practioner, Julie, and then Dr. Grossman would see me right before the infusion would start. It took some time for Julie to make it to our room. When she came in, she began to talk to me about what would happen with infusion and answer any questions. Julie then started a quick examination. Just as the examination started, Dr. Grossman walked in. Dr. Grossman said "Hi" and made small talk and then just sat quietly for a moment. Nicole and I could both tell he was acting a bit strange and seemed to have something more to say. Dr. Grossman then asked, "Did anyone discuss your scans with you?" I said "No." Dr. Grossman sighed and said, "They found a spot on your liver during your last CT scan. I looked at your scan in February and could see it on that scan. It hasn't changed. It is most likely a hemangioma (Liver hemangioma (he-man-jee-O-muh) is a noncancerous (benign) mass that occurs in the liver.). I am not worried about it but the radiologist will not clear it so we can't start the infusion until we have it cleared."
Dr. Grossman then went on to explain that I would need a MRI before we could start. Dr. Grossman was a bit frustrated. Dr. Grossman said he would have Chris, the Clinical Trial Coordinator, arrange the MRI. Dr. Grossman said he hoped we could get the MRI done and still begin the treatment. Dr. Grossman said it was possible we would have to get the MRI and then wait until Friday to start the infusion. Nicole and I went back out to the waiting area until Chris told us what was happening.
Chris came out a few minutes later and was very apologetic. Chris said he was able to schedule the MRI at 2 pm and we could start the infusion at 3 pm. We said that was fine because we had a doctor's appointment with Dr. Noyes at 2 pm so we would try and flip the appointment. We called Dr. Noyes office and they said we could come down and, even though we may have to wait, they would attempt to get me in as soon as possible.
At this point, I had not had anything to eat. Nicole and I decided to go to the cafeteria at IMC, which is where Dr. Noyes has his office. I was about half way through my hamburger and fries when Chris called me. Chris said he was calling to confirm that the MRI was scheduled. Chris then said that Radiology informed him that I had to be fasting for the MRI. I told Chris ok I would just have to stop eating my lunch.
We then went over and were able to see Dr. Noyes. One thing that I have learned, and that Nicole is a PROFESSIONAL with, is bringing a simple trip to the doctor's office. I have learned this really makes a difference when they go out of there way to make allowances for you. We took them Kettle Corn and Chocolate-covered Pretzels. ( I have also learned that you can never go wrong with chocolate when it comes to nurses.)
We then headed back to Huntsman. Chris had said that it would be a good idea to be there 20-30 minutes early so we could get paperwork done and get in there a quick as possible. We arrived about 30 minutes early, filled out paperwork, and they got us right in. I did find that the liver MRI was one of the toughest scans I have done. You have to hold your breath for nearly every scan. Though it is only a few seconds each time, it doesn't allow you to relax. I was able to breath normally through one of the scans. I was tired and fell asleep for a few seconds. I learned that made the scan take longer.
We got through the scan and arrived at the infusion center right at 3 pm. They were expecting me and checked me in. Chris came running in and told them to wait until the scan was read. Chris said he would call the "Reading Room" and get them to read the scan as soon as possible. We were waiting and waiting. Lori, the nurse in the Infusion Center, came out at one point and told me that I could wait out in the waiting room or back in the infusion room. I decided, because I was working on a puzzle, that I would wait in the waiting area. Chris finally came back and said everything was fine and we could start the infusion.
Lori then came out and said it would take some time to get the medicine mixed and then it would be ready for infusion. This was the first time I heard the infusion called chemotherapy. I noticed, once in the infusion center, that the IV bag also said chemo. I realized this was serious but also realized that it was different from chemo, especially the side effects!!!
Lori explained the procedure. Lori said the infusion would take 90 minutes. Lori started the infusion and then went and printed some information about the medicine. It is called Ipilimumab. Ipilimumab (also known as MDX-010 or MDX-101) is a human monoclonal antibody intended to be used as a drug to activate the immune system. Ipilimumab is undergoing clinical trials for the treatment of melanoma. Ipilimumab results in a one-year survival rate of 47% to 51% for people with stage III or IV melanoma, which is almost double the average. Unlike chemotherapy, in which side effects become evident soon after beginning treatment, the side effects associated with ipilimumab can vary greatly, presumably because the human immune system varies from person to person. The most common side effects of ipilimumab occur in the gastrointestinal tract (such as diarrhea and inflammation of the colon) and the skin (such as rash and inflammation of the skin). Less frequently occurring side effects include hepatitis, inflammation of the pituitary gland (hypophysitis), eye inflammation (uveitis), and kidney problems (nephritis). Side effects occur in up to 84% of patients but are generally mild and treatable. Julie, the Nurse Practioner, said that if we did get the drug, we probably would not experience side effects, if any, about 2 weeks from the infusion.
Lori told us that the infusion would take 90 minutes and then they would monitor my vital signs for an hour after the infusion. The infusion started about 5 pm and we finally left Huntsman about 7:30 pm. 12 hours at Huntsman!!! I love the place but that was a little long!!!
I still had not eaten. Nicole and I went to Red Robin, which was very near Huntsman, and I finally was able to eat. We got home about 9 pm. Luckily my daughters, Mariah and Allyson, were great and took care of the younger girls. Those two have been very good through this entire experience.
I did feel a little sore before going to bed. I woke up with a sore throat and a running nose. I think that is most likely from this freakish Utah weather!!!
My loving wife, Nicole, bought me a book that I could read at Huntsman. I asked her to get me Chad Lewis's book "Surround Yourself with Greatness." I read several chapters while at Huntsman. It is a very good book. Nicole went to high school with Chad. This morning, the day after the infusion, Chad was speaking at a morningside for the Orem High Seminary at our Stake Center. Nicole, who was as tired as myself, woke up early and went to the morningside. Nicole spoke with Chad and had him sign my book. What an awesome wife!!! To top it off, she called me as I was dropping off the girls at school and told me to stop by the church and say "hi" to Chad. I was able to get there in time and say "hi" to Chad. I met Chad once before at Nicole's 20 year high school reunion. Chad was awesome and it was great to speak to him for a few minutes.
All in all, it is nice to get started and feel like I am doing something to prevent the disease from coming back or to catch it early if it comes back!!!
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