Robert had his first chemo treatment yesterday! First chemo drug they administered was Vectibix. This drug is not approved by the FDA. There was some confusion on the insurance as to whether they approved the drug. Dr. Nadler was told it was approved, after inquiring twice, he even told us that he was very surprised it was approved without him having to prove the necessity. Anyway, they started the drug, and then found out that indeed the insurance company denied this drug. They will of course appeal and Dr. Nadler feels he can get it approved. We hope so because the cost of this drug is $11,000 and we had to sign a form stating if the insurance does not pay, that we will have to cover the cost. I laughed and said yeah just show me where to sign. Next they administered Cisplatin and Taxotere. The treatment lasted 6 hours. My BFF Lisa came up and sat with us, after what happened to Robert last week I did not feel comfortable with leaving him alone. Because of Lisa the hours flew by.
Robert will get the Vectibix once every two weeks and the Cisplatin and Taxotere once very three weeks. The side effect will be pretty bad, because of the high doses he will recieve. He has already experienced stomach aches and weakness.
Lisa made it home just in time before the storms hit and we were running out of Baylor at 6 with reports of tornado's everywhere. It seemed we were dodging them until we got to the East side of Rockwall. But we were determined to get back home.
We are going to see how Robert does the next couple of days and if all goes well we may head down to Port Aransas and spend a few days on the beach at Mother and Benny's beach pad. I think a nice sea breeze will be just what the Dr. ordered.
Thursday, September 9, 2010
Tuesday, September 7, 2010
Try Try Again!
We will be heading back to Dallas bright and early Wednesday morning. We are anxious to find out what Dr. Nadler's treatment plan will be now. Robert has had a bad week, he has been feeling really weak. A dear friend was able to get him out of the house yesterday and we went for a boat ride. It was really nice, we were out on the lake for about 3 hours and when we got home Robert was pretty wiped out. We are not sure why he has been feeling so bad, maybe we can get some answers tomorrow.
Our thoughts and prayers are with Harold and Pat Starbuck. Harold is also battling cancer right now and needs healing prayers. We would like to thank everyone for the cards, emails and phone calls. I am sorry it takes me a while to return calls, I will try to be better. Looking forward to seeing my BFF tomorrow.. I think Chemo is suppose to take about 7 to 9 hours and am so glad I will have company. Don't forget your pine needles Lisa, with all the patients there we should be able to wipe out about 50 baskets.
Our thoughts and prayers are with Harold and Pat Starbuck. Harold is also battling cancer right now and needs healing prayers. We would like to thank everyone for the cards, emails and phone calls. I am sorry it takes me a while to return calls, I will try to be better. Looking forward to seeing my BFF tomorrow.. I think Chemo is suppose to take about 7 to 9 hours and am so glad I will have company. Don't forget your pine needles Lisa, with all the patients there we should be able to wipe out about 50 baskets.
Wednesday, September 1, 2010
"Stumbled Out Of The Gate!"
Robert picked himself up and is right back in the race!
It has been a very hectic/scary couple of days to say the least. I will start from the beginning.
We left Monday morning for Robert's PET scan at Baylor, (well, let me go back to Friday, after the medi-port surgery and on our way home we got a call that the insurance company did not approve the PET as of yet. After a very tense conversation with customer service rep, we were not sure they would approve the scan. After speaking to our doctor he assured us we should go ahead with the scan, he felt confident he would get it approved and we could always appeal.) So back to our trip to Dallas Monday morning, the insurance company called and said they did approve the scan, big sigh of relief until Baylor called and said the machine was broke and they were not sure it would be fixed Monday. We told them we were already halfway there so they said to go ahead and come on in. When we arrived we were told that the machine would not be fixed, but they were going to fit us in at the Medical Pavilion building. They said there was a golf cart outside waiting to rush us over and that they did.
Tuesday AM
Robert has Lab work and then appointment with Dr. Nadler to get the scan results.. Our prayers were answered, the scan showed that the cancer had not moved to any other areas. Dr. Nadler congratulated us 3 times, he was very encouraged by the scan. He told us as much as Stage 4C cancer being curable, this was curable. Then they take Robert up to start chemo. He is going to be receiving 3 chemo drugs, one is a new drug he had not had before, the other 2 he had last time, but in small doses. The first drug they administered was called Erbitux, it was to be administered over a 2 hour period and then he would receive fluids for an hour before the started the 2nd chemo drug. The nurse (Lea) gave Robert all his pre-meds. Benadryl and steroids and then started the Erbitux, and had just stepped out of the room for just a minute when Robert had a reaction to the drug. He was having anaphylactic shock due to the drug. It all happened so fast, Robert lost conscientious and was unresponsive for quite some time. The called Dr. Nadler in and when he got there he said push EPI. They did and he told me "Judy, people die from this type of shock everyday, but Robert is not going to die on my watch" I had not even thought about him dying until that moment and said "you mean he could die from this" After the EPI shot he started coming around in about 2 minutes very long minutes. After the EPI shot he still was not responding like he should so they rushed him over to the ER, which was only across the street. Robert was complaining of chest pains and in their words his vitals "tanked". Robert spent the rest of the day in ER, they pushed so many drugs down him there were nurses not even assigned to him coming in just to see the patient who had received all those drugs. He started feeling and looking alot better after a few hours. They ran tests to make sure there was not any damage to his heart from the shock. Robert was released Tuesday night.
Dr. Nadler said that Erbitux was 1/2 mouse and 1/2 human. After consulting with colleagues they are going to try another kind of Erbitux which is 100% human. It is not FDA approved yet, and he thinks the Insurance company will deny, but he feels he will be able to build a very strong case as to why he needs this drug. So we will try this all again next Wednesday. Robert does not have any side effects from all the trauma and drugs yesterday other than he is having a hard time talking. He feels very blessed to be with us today. He said he felt like he was going to be spending Labor Day with Jesus yesterday. Also his words were, "you know I might have stumbled coming out of the gate, but I am still in this race".
It has been a very hectic/scary couple of days to say the least. I will start from the beginning.
We left Monday morning for Robert's PET scan at Baylor, (well, let me go back to Friday, after the medi-port surgery and on our way home we got a call that the insurance company did not approve the PET as of yet. After a very tense conversation with customer service rep, we were not sure they would approve the scan. After speaking to our doctor he assured us we should go ahead with the scan, he felt confident he would get it approved and we could always appeal.) So back to our trip to Dallas Monday morning, the insurance company called and said they did approve the scan, big sigh of relief until Baylor called and said the machine was broke and they were not sure it would be fixed Monday. We told them we were already halfway there so they said to go ahead and come on in. When we arrived we were told that the machine would not be fixed, but they were going to fit us in at the Medical Pavilion building. They said there was a golf cart outside waiting to rush us over and that they did.
Tuesday AM
Robert has Lab work and then appointment with Dr. Nadler to get the scan results.. Our prayers were answered, the scan showed that the cancer had not moved to any other areas. Dr. Nadler congratulated us 3 times, he was very encouraged by the scan. He told us as much as Stage 4C cancer being curable, this was curable. Then they take Robert up to start chemo. He is going to be receiving 3 chemo drugs, one is a new drug he had not had before, the other 2 he had last time, but in small doses. The first drug they administered was called Erbitux, it was to be administered over a 2 hour period and then he would receive fluids for an hour before the started the 2nd chemo drug. The nurse (Lea) gave Robert all his pre-meds. Benadryl and steroids and then started the Erbitux, and had just stepped out of the room for just a minute when Robert had a reaction to the drug. He was having anaphylactic shock due to the drug. It all happened so fast, Robert lost conscientious and was unresponsive for quite some time. The called Dr. Nadler in and when he got there he said push EPI. They did and he told me "Judy, people die from this type of shock everyday, but Robert is not going to die on my watch" I had not even thought about him dying until that moment and said "you mean he could die from this" After the EPI shot he started coming around in about 2 minutes very long minutes. After the EPI shot he still was not responding like he should so they rushed him over to the ER, which was only across the street. Robert was complaining of chest pains and in their words his vitals "tanked". Robert spent the rest of the day in ER, they pushed so many drugs down him there were nurses not even assigned to him coming in just to see the patient who had received all those drugs. He started feeling and looking alot better after a few hours. They ran tests to make sure there was not any damage to his heart from the shock. Robert was released Tuesday night.
Dr. Nadler said that Erbitux was 1/2 mouse and 1/2 human. After consulting with colleagues they are going to try another kind of Erbitux which is 100% human. It is not FDA approved yet, and he thinks the Insurance company will deny, but he feels he will be able to build a very strong case as to why he needs this drug. So we will try this all again next Wednesday. Robert does not have any side effects from all the trauma and drugs yesterday other than he is having a hard time talking. He feels very blessed to be with us today. He said he felt like he was going to be spending Labor Day with Jesus yesterday. Also his words were, "you know I might have stumbled coming out of the gate, but I am still in this race".
Wednesday, August 25, 2010
Mid Week Report!
Not much to report yet. Robert's surgery for the medi-port is scheduled Friday. He will have his PET/CT scan Monday and then if all goes well with the scan he will start Chemo Tuesday. He has been staying busy this week with getting his truck cleaned out. I have a list of chores to keep him busy. My dad is coming Friday and should be here by the time we get home. We are anxious for him to get here. Maybe him and Robert can work on my list together. We'll see... Hope everyone has a good week.
Saturday, August 21, 2010
Dr. Nadlers Treatment Plan!
August 19th - Thursday - Robert's oral surgeon was able to grind down the exposed jaw bone after 9 numbing shots and 10 stitches. His mouth is doing much better.
August 20th - Friday - We met with Dr. Nadler for the results of the CT scan. The scan showed that the cancer is in the large bronchial stem in the Left lung same as the lung scope showed and also has affected Lymph Nodes in the center of the chest. Therefore surgery is not an option for Robert. We will go back to Baylor next week and Robert will have a medi-port put in his chest for easy access for blood work and Chemo. Dr. Nadler is also scheduling a PET scan next week, if the scan shows that the cancer has spread to any other areas, then Robert's cancer will incurable, if it is just in the areas the CT scan showed, then Dr. Nadler is going to treat it aggressively with high doses of Chemo. The Chemo drugs will be: Taxotere, Cistplatin, and 5-FU. Robert has already had these chemo drugs, but in lower doses to enhance radiation. Chemo will start August 31st there at Baylor and he will have 6 weekly treatments and then he will have another scan to see if the cancer is responding to the Chemo. It if is, then they will continue with 6 more weekly Chemo treatments and then follow up with 7 weeks of daily radiation treatments. Dr. Nadler feels this is the best approach to this. The pathology report showed this is indeed the same type cancer that initially started at the base of Robert's tongue. Dr. Nadler is not completely convinced. He has never seen nor heard of this happening in a non smoker. He said this would be the first case that he knows of. Robert said he feels special.
We are glad to be home today and will try and gather ourselves. We are so blessed to have such an awesome support team of family, friends and doctors. Our specific prayers this coming week will be that there will be no change in Robert's cancer and he is allowed a fighting chance.
Love,
Robert and Judy
August 20th - Friday - We met with Dr. Nadler for the results of the CT scan. The scan showed that the cancer is in the large bronchial stem in the Left lung same as the lung scope showed and also has affected Lymph Nodes in the center of the chest. Therefore surgery is not an option for Robert. We will go back to Baylor next week and Robert will have a medi-port put in his chest for easy access for blood work and Chemo. Dr. Nadler is also scheduling a PET scan next week, if the scan shows that the cancer has spread to any other areas, then Robert's cancer will incurable, if it is just in the areas the CT scan showed, then Dr. Nadler is going to treat it aggressively with high doses of Chemo. The Chemo drugs will be: Taxotere, Cistplatin, and 5-FU. Robert has already had these chemo drugs, but in lower doses to enhance radiation. Chemo will start August 31st there at Baylor and he will have 6 weekly treatments and then he will have another scan to see if the cancer is responding to the Chemo. It if is, then they will continue with 6 more weekly Chemo treatments and then follow up with 7 weeks of daily radiation treatments. Dr. Nadler feels this is the best approach to this. The pathology report showed this is indeed the same type cancer that initially started at the base of Robert's tongue. Dr. Nadler is not completely convinced. He has never seen nor heard of this happening in a non smoker. He said this would be the first case that he knows of. Robert said he feels special.
We are glad to be home today and will try and gather ourselves. We are so blessed to have such an awesome support team of family, friends and doctors. Our specific prayers this coming week will be that there will be no change in Robert's cancer and he is allowed a fighting chance.
Love,
Robert and Judy
Thursday, August 19, 2010
Dr. Nadler and Dr. Burch
We met Dr. Nadler, an Oncologist who specializes in Head, Neck and Lung cancer, Dr. Burch, who has completed medical school, and 4 years of residency and (before you can be an Oncologist you have to shadow with a Dr. for 4 years, which is what his is doing with Dr. Nadler) and Dietitian Andria and the office staff today at Baylor. We feel blessed to be in their care right now.
Dr. Nadler pulled strings and got Robert in for a CT scan yesterday at 5, after his office staff was told NO twice, and a personal call from him. He was quite proud of himself.
Their main concern of course right now is Robert coughing up blood and to figure out if this is the same type cancer (Squamous Cell Carcinoma) as Robert had before or is this a new cancer. Dr. Nadler said that because of the location of the tumor it made it very rare and if it is Squamous Cell it will be the first case he has seen where it has spread into the bronchial something something stem.. If this is the same type cancer Robert will probably have surgery Monday or Tuesday to scrape the tumor to help him breath better and try to control the bleeding. If it is a new type cancer, he said we will take a step back and go from there.
We will be going to Texarkana today to see Robert's Oral Surgeon, his jaw bone is splintering from all the radiation he had back in '07 and pushing through his gum and therefor has caused a sore on his tongue. This is the only thing Robert cares about right now, he is in so much pain from this that he really can not do anything. If it wasn't for Robert seeing Dr. Duke today, Dr. Nadler wanted to admit Robert to the hospital yesterday. We are hoping Dr. Duke can remedy this problem today so we can shift focus on lung issues.
Thanks so much for all your prayers and encouraging words. Will keep you posted!
Love,
Robert and Judy
Dr. Nadler pulled strings and got Robert in for a CT scan yesterday at 5, after his office staff was told NO twice, and a personal call from him. He was quite proud of himself.
Their main concern of course right now is Robert coughing up blood and to figure out if this is the same type cancer (Squamous Cell Carcinoma) as Robert had before or is this a new cancer. Dr. Nadler said that because of the location of the tumor it made it very rare and if it is Squamous Cell it will be the first case he has seen where it has spread into the bronchial something something stem.. If this is the same type cancer Robert will probably have surgery Monday or Tuesday to scrape the tumor to help him breath better and try to control the bleeding. If it is a new type cancer, he said we will take a step back and go from there.
We will be going to Texarkana today to see Robert's Oral Surgeon, his jaw bone is splintering from all the radiation he had back in '07 and pushing through his gum and therefor has caused a sore on his tongue. This is the only thing Robert cares about right now, he is in so much pain from this that he really can not do anything. If it wasn't for Robert seeing Dr. Duke today, Dr. Nadler wanted to admit Robert to the hospital yesterday. We are hoping Dr. Duke can remedy this problem today so we can shift focus on lung issues.
Thanks so much for all your prayers and encouraging words. Will keep you posted!
Love,
Robert and Judy
Wednesday, August 18, 2010
No news WAS good news!
Well we are blogging again, which means we have bad news to report. Robert for the last couple of months has been feeling lousy. In April he had to do 20 Hyperbaric treatments to promote good blood flow for when he had 2 back teeth pulled. Treatments did what they were suppose to, when they pulled the teeth he had good blow flow and the Doctor says it is healing as best as it can. Due to all the radiation to Robert's face and neck his jaw bone has been deteriorating, so the roots of his back teeth did not have anything to hold on to. He has had to see his Oral surgeon a few times after surgery for more procedures due to the jaw bone still splintering.
Now to present day, as I said he has been feeling pretty lousy the last couple of months. The weather has gotten to him so he decided to take a vacation this week. We met with his ENT last Friday for a check up and we informed him of some of the symptoms Robert was experiencing. He has been coughing up blood, weight loss and wheezing. He told Robert everything looked good down his throat, prescribed antibiotics and an inhaler and told us to follow up with his primary doctor. So we set up an apt.
Robert went to Canton Monday to visit Coley and his brothers. When Robert was in Tyler yesterday morning meeting Coley, he began to cough up alot of blood, so he went to the ER at ETMC and they said the blood was coming from the lungs and they needed to scope him. The scope showed a tumor on his left lung, they did a biopsy, but from the looks of it they say it is most probably cancer. The doctor advised Robert to get in to his Oncologist as soon as possible, which is what we are gonna do. We have an appointment at Baylor today for our first opinion of treatment and then will follow up with Robert's oncologist in Paris. The only thing Robert says he needs right now is prayers! Will update again after our visit today.
On a good note, since we have not blogged in a while, just wanted to let everyone know Cassie has opened up her own office and working on her PHD. We are so proud of her and and you can check out her website: http://www.sperocs.com/index.html
Now to present day, as I said he has been feeling pretty lousy the last couple of months. The weather has gotten to him so he decided to take a vacation this week. We met with his ENT last Friday for a check up and we informed him of some of the symptoms Robert was experiencing. He has been coughing up blood, weight loss and wheezing. He told Robert everything looked good down his throat, prescribed antibiotics and an inhaler and told us to follow up with his primary doctor. So we set up an apt.
Robert went to Canton Monday to visit Coley and his brothers. When Robert was in Tyler yesterday morning meeting Coley, he began to cough up alot of blood, so he went to the ER at ETMC and they said the blood was coming from the lungs and they needed to scope him. The scope showed a tumor on his left lung, they did a biopsy, but from the looks of it they say it is most probably cancer. The doctor advised Robert to get in to his Oncologist as soon as possible, which is what we are gonna do. We have an appointment at Baylor today for our first opinion of treatment and then will follow up with Robert's oncologist in Paris. The only thing Robert says he needs right now is prayers! Will update again after our visit today.
On a good note, since we have not blogged in a while, just wanted to let everyone know Cassie has opened up her own office and working on her PHD. We are so proud of her and and you can check out her website: http://www.sperocs.com/index.html
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