Well, I had better catch everyone up. With my last scans and doctor visit, in July 2010, I was told by the doctor that everything was clear and that we would be back in 3 months. 10 days later, I received a phone call from Dr. Grossman's office that there was some concern with my neck CT scan. The doctor said there were some lymph nodes in my neck that had enlarged (this is not a good sign). The doctor said they wanted me to get another PET/CT scan to see if the lymph nodes were reactive. I went to my appointment at Huntsman. The test consists of getting an IV line, injecting the radioactive tracer, waiting for about 45 minutes, and then getting scanned. After getting the tracer, I waited. After about an hour and a half, the nurse came in and said that there was a problem with the "camera" that she would be back in a few minutes. 30 minutes later, the nurse came back and walked me down a hall and into the basement. I knew something was not normal when she said, "I am so lost as to where we are." (She had told me to follow another gentleman, who were followed downstairs to another part of the hospital that had a scanner.) I was put on the scanner and the test was done. I learned from my wife, following the scan, that they had cancelled the rest of the scans that day because the "scanner had broken." (I think the main scanner had a problem but since they had given me the tracer, they needed to do a scan.) A few days later, I received a call from Dr. Grossman who said the scan showed one of my lymph nodes was "excited". Dr. Grossman said that they wanted me to come in and get a needle biopsy of the lymph node.
This information started a debate. My wife, who is a nurse and works with several different doctors, began discussing this test. The doctor who removed the original melanoma, Dr. Cook, told Nicole to have the lymph node removed. Nicole spoke with Dr. Grossman regarding removing the lymph node and he said we should do the needle biopsy and decide after the results. We went to the biopsy. It was pretty interesting. The radiologist numbs the neck and uses a ultrasound to locate the lymph node and to monitor the needle. The radiologist said the lymph node was sitting on the jugular vein and next to the carotid artery (what a great place for it!) The radiologist then inserts a needle into the lymph nodes and collects cells. The needle is then given to a pathologist, who is in the room, who prepares the slides with the cells and reads them immediately. They do this also to make sure they are getting sufficient cells. This occurred about 5 times. The pathologist would come back in each time and say that she did not find any obvious melanoma cells (good news!) but would need to do some further tests to completely determine the findings. A few days later the doctor called and said there was no melanoma located in the lymph node. Nicole asked the doctor about removing the lymph node. Dr. Grossman said there was no reason to remove the lymph node at this time. Nicole was concerned because Dr. Cook told her to have it removed because the fact that it had been reactive was enough to concern him.
We then decided to get a third opinion. Dr. Grossman is a scientist. He treats and examines melanoma on a daily basis. He may want to see what the lymph node does to collect more data for future reference. I don't think he would jeopardize my health for a second but it is easy to see why he would not want to remove the lymph node. Dr. Cook has some experience with melanoma but it is not his specialty. Dr. Cook obviously sees the lymph node as a risk and thinks the best course of action is to remove the risk. We decided to see Dr. Noyes again for the final opinion. Dr. Noyes is a melanoma surgical oncologist. He sees, examines, and removes melanoma from patients nearly everyday. We decided that we would do whatever Dr. Noyes said to do. (He was either going to side with Dr. Grossman or Dr. Cook.) After seeing Dr. Noyes, he said that leaving the lymph node was the way to go because if he went in to the lymph node and found nothing, he could remove it but I would have surgery for no reason which was a bigger risk. So, the lymph node is still in my neck.
Thursday, September 16, was the date for the new scans. I got a CT scan of my neck, abdomen, and groin and a MRI of my brain. The scans went really well and quick. The only real issue was with the IV. It hurt like H$(*!! The site bruised a lot as well.
Friday, September 17, was the treatment date. My mother, my daughter Allyson, and Nicole all went with me. We got up there a little early so we could get the labs drawn in plenty of time so the results would be back before seeing Dr. Grossman. I also met the new clinical coordinator, John. We went to the lab where they start the IV and draw about 12 vials of blood. I usually make a joke about how much blood they take but this time the nurse made the joke. Starting and placing the IV went really well and she got the blood required. John and my wife were in the room with me. I made the joke that I was light headed from all the blood that was drawn and would need a wheel chair to get around. After getting the labs drawn, we all went upstairs to the restaurant to something to eat. Huntsman has a really nice restaurant with a great view of the valley!
After lunch we went down to the appointment. Dr. Grossman came in and asked a few questions and began looking at the lab results and the scans. Dr. Grossman said everything looked fine but he hadn't received the final radiologist report. He said the lymph node in my neck looked smaller when compared to the previous scan but the radiologist had not given it a specific size. Dr. Grossman said he was going to give me benadryl prior to infusion to hopefully prevent another reaction. Dr. Grossman was aware of my "fondness" to benadryl but said it was the best option at this point. Dr. Grossman said he also wanted me to take benadryl and pepcid for one week following the infusion. This was to hopefully prevent any reaction to the infusion.
Nicole told me that benadryl and pepcid are both histamine blockers and that is why he wanted me to take them.
I went down to infusion. I was taken to a new addition to the infusion suite. Debbie, the nurse, said that they had outgrown the infusion suite. Debbie said the current construction, which is an addition to the north side of the hospital, would include a new infusion suite. I noticed that the chairs in the new site were motorized. Debbie pushed 50 mg of benadryl through my IV. Debbie did it slow to help with my reaction to the benadryl. It didn't take long for my head to go fuzzy!! I then began to get hot. The benadryl also burns going in. My whole forearm was burning!!! After she finished, I could not get comfortable and my legs would itch. It was not very fun. After she started the IPI medicine, Nicole told me just to go to sleep,which I did and it did help. I completed the infusion with no reaction, at least not enough of one to send me to the ER! I was wiped out but doing ok. We went to dinner before going home.
Before going to bed, I took the benadryl and pepcid. I figured I would feel fine in the morning and all would be normal again. It was not quite so simply however. I woke up Saturday and was exhausted. I was having difficulty taking a deep breath. It was not the same as when I had the reaction but it was not normal either. I would run out of breath after just walking across the room. I would be sweating one minute and fine the next. This lasted all day Saturday. I slept Saturday night and figured I would wake up Sunday feeling fine. I woke up Sunday with the same problem. The more I thought about it the more it made sense. I am, by the way, getting a form of chemo. In my research of the drug, it states that the side effects are flu-like symptoms. That is a lot how I felt. I had aches and pains, shortness of breath, hot flashes, etc. It was another reminder that I am fighting cancer!!!
I am feeling good enough today to be at work. I think I will be ok as long as I don't overdue it. I am grateful that I have my family to support me with this journey!!!
This information started a debate. My wife, who is a nurse and works with several different doctors, began discussing this test. The doctor who removed the original melanoma, Dr. Cook, told Nicole to have the lymph node removed. Nicole spoke with Dr. Grossman regarding removing the lymph node and he said we should do the needle biopsy and decide after the results. We went to the biopsy. It was pretty interesting. The radiologist numbs the neck and uses a ultrasound to locate the lymph node and to monitor the needle. The radiologist said the lymph node was sitting on the jugular vein and next to the carotid artery (what a great place for it!) The radiologist then inserts a needle into the lymph nodes and collects cells. The needle is then given to a pathologist, who is in the room, who prepares the slides with the cells and reads them immediately. They do this also to make sure they are getting sufficient cells. This occurred about 5 times. The pathologist would come back in each time and say that she did not find any obvious melanoma cells (good news!) but would need to do some further tests to completely determine the findings. A few days later the doctor called and said there was no melanoma located in the lymph node. Nicole asked the doctor about removing the lymph node. Dr. Grossman said there was no reason to remove the lymph node at this time. Nicole was concerned because Dr. Cook told her to have it removed because the fact that it had been reactive was enough to concern him.
We then decided to get a third opinion. Dr. Grossman is a scientist. He treats and examines melanoma on a daily basis. He may want to see what the lymph node does to collect more data for future reference. I don't think he would jeopardize my health for a second but it is easy to see why he would not want to remove the lymph node. Dr. Cook has some experience with melanoma but it is not his specialty. Dr. Cook obviously sees the lymph node as a risk and thinks the best course of action is to remove the risk. We decided to see Dr. Noyes again for the final opinion. Dr. Noyes is a melanoma surgical oncologist. He sees, examines, and removes melanoma from patients nearly everyday. We decided that we would do whatever Dr. Noyes said to do. (He was either going to side with Dr. Grossman or Dr. Cook.) After seeing Dr. Noyes, he said that leaving the lymph node was the way to go because if he went in to the lymph node and found nothing, he could remove it but I would have surgery for no reason which was a bigger risk. So, the lymph node is still in my neck.
Thursday, September 16, was the date for the new scans. I got a CT scan of my neck, abdomen, and groin and a MRI of my brain. The scans went really well and quick. The only real issue was with the IV. It hurt like H$(*!! The site bruised a lot as well.
Friday, September 17, was the treatment date. My mother, my daughter Allyson, and Nicole all went with me. We got up there a little early so we could get the labs drawn in plenty of time so the results would be back before seeing Dr. Grossman. I also met the new clinical coordinator, John. We went to the lab where they start the IV and draw about 12 vials of blood. I usually make a joke about how much blood they take but this time the nurse made the joke. Starting and placing the IV went really well and she got the blood required. John and my wife were in the room with me. I made the joke that I was light headed from all the blood that was drawn and would need a wheel chair to get around. After getting the labs drawn, we all went upstairs to the restaurant to something to eat. Huntsman has a really nice restaurant with a great view of the valley!
After lunch we went down to the appointment. Dr. Grossman came in and asked a few questions and began looking at the lab results and the scans. Dr. Grossman said everything looked fine but he hadn't received the final radiologist report. He said the lymph node in my neck looked smaller when compared to the previous scan but the radiologist had not given it a specific size. Dr. Grossman said he was going to give me benadryl prior to infusion to hopefully prevent another reaction. Dr. Grossman was aware of my "fondness" to benadryl but said it was the best option at this point. Dr. Grossman said he also wanted me to take benadryl and pepcid for one week following the infusion. This was to hopefully prevent any reaction to the infusion.
Nicole told me that benadryl and pepcid are both histamine blockers and that is why he wanted me to take them.
I went down to infusion. I was taken to a new addition to the infusion suite. Debbie, the nurse, said that they had outgrown the infusion suite. Debbie said the current construction, which is an addition to the north side of the hospital, would include a new infusion suite. I noticed that the chairs in the new site were motorized. Debbie pushed 50 mg of benadryl through my IV. Debbie did it slow to help with my reaction to the benadryl. It didn't take long for my head to go fuzzy!! I then began to get hot. The benadryl also burns going in. My whole forearm was burning!!! After she finished, I could not get comfortable and my legs would itch. It was not very fun. After she started the IPI medicine, Nicole told me just to go to sleep,which I did and it did help. I completed the infusion with no reaction, at least not enough of one to send me to the ER! I was wiped out but doing ok. We went to dinner before going home.
Before going to bed, I took the benadryl and pepcid. I figured I would feel fine in the morning and all would be normal again. It was not quite so simply however. I woke up Saturday and was exhausted. I was having difficulty taking a deep breath. It was not the same as when I had the reaction but it was not normal either. I would run out of breath after just walking across the room. I would be sweating one minute and fine the next. This lasted all day Saturday. I slept Saturday night and figured I would wake up Sunday feeling fine. I woke up Sunday with the same problem. The more I thought about it the more it made sense. I am, by the way, getting a form of chemo. In my research of the drug, it states that the side effects are flu-like symptoms. That is a lot how I felt. I had aches and pains, shortness of breath, hot flashes, etc. It was another reminder that I am fighting cancer!!!
I am feeling good enough today to be at work. I think I will be ok as long as I don't overdue it. I am grateful that I have my family to support me with this journey!!!
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