"Palliative care (from Latin palliare, to cloak) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay or reverse progression of the disease itself or provide a cure". We have now entered the palliative portion of Ron's care. We met with the MO on Thursday morning. He said that the PET scan showed that the main tumor, in Ron's right cheek, which was less than 1 cm. on April 9, is now about 5 cm. In addition, there is involvement in his left neck nodes, and his trachea. What this boils down to is that there is no longer a surgical or radiation option. Ron started Erbitux that morning. The first infusion lasted about 3 hours, but the remaining weekly infusions will only take about an hour. Erbitux is a form of chemotherapy called targeted therapy. It actually is a highly active IgG1 monoclonal antibody targeting the epidermal growth factor receptor (EGFR).
Erbitux has been well proven to shrink tumors. This is the goal of Ron's care at this point. We would like to be able to buy as much quality time as we can. We all accept that Ron will not be cured of this horrible cancer. There is a possibility that it may have metastasized to his brain. He will go for a brain MRI on Tuesday afternoon. He has been having a lot of bad headaches lately, but we don't know why. After his first Erbitux treatment, he was completely wiped out. I hope that he will be able to handle them better in the future. He is now on Fentanyl patches in addition to his Roxicet for pain. This seems to have really helped so far. He also used the Fentanyl patches when he was going through treatment in 2005, and they worked very well in controlling his pain. Ron did throw up in the middle of the night after the first treatment, so he also started taking Compazine for nausea.
Palliative care is not the same as hospice care. With palliative care, we are still doing whatever treatment we can to keep Ron well for as long as possible. We are not ready to give up yet! If Ron reaches that point then we will involve hospice, but hopefully that won't be for a long, long time. The MO told us that with the Erbitux, patients who get an acne-like rash are responding well to the treatment, so pray for pimples!
In Honor of My Husband, Ron
Showing posts with label Erbitux. Show all posts
Showing posts with label Erbitux. Show all posts
Saturday, April 25, 2009
Thursday, April 16, 2009
Chemo to start...
This Monday was Ron's outpatient surgery to get his PORT for chemo. It turned out to be more involved than that. The "cyst" on his behind turned out to be a "fistula in ano", which is a little more serious than a cyst. I am not going to go into great detail, if you want to know more you can look it up. I don't want this to get too graphic. The surgeon opened and drained the area, so he came home with more wounds than we thought he would. The poor guy just can't seem to catch a break. It should resolve itself without too much more intervention. The only worry is that once Ron starts chemo, he will me immuno-compromised, and open to any infections, so that could play a part.
Tuesday was supposed to be his PET scan at Burlington but the machine was not working, so they made us an appointment bright and early Thursday morning at a different hospital. After his PET scan, we came home so he could "eat", and then went to our chemo training appointment. It turned out that he will not be wearing a pack at home at all. He will be starting Erbitux next Thursday, the 23rd. It will then be a weekly process, just until...
It depends on his reaction (or lack of) to the chemo. The MO may also add Cisplatin to the Erbitux. That will depend on the reading of the PET scan from today. The MO is gone for this week, so I'm sure we won't hear anything about the PET results until next week.
On another note, I was surprised this week to find out that our sweet little niece is planning a fundraiser for Ron over Memorial Day weekend at Piggly Wiggly in Lake Geneva. There will be a brat wagon set up for three days, so if you live close by, come out and eat a brat for Ron!
There is not much more to report on his health. He is just very worn out, but he can't sleep for very long at a time, so he is up and down all day and night. I still don't think he takes enough of his pain medication, but he is stubborn! Even though I have had both Doctors and Nurses explain the pain cycle, and how much easier it is to control if you stay on top of the pain, and don't wait until you're in agony to take something, he will not listen. He may need a swift kick in the sore butt :)!
Tuesday was supposed to be his PET scan at Burlington but the machine was not working, so they made us an appointment bright and early Thursday morning at a different hospital. After his PET scan, we came home so he could "eat", and then went to our chemo training appointment. It turned out that he will not be wearing a pack at home at all. He will be starting Erbitux next Thursday, the 23rd. It will then be a weekly process, just until...
It depends on his reaction (or lack of) to the chemo. The MO may also add Cisplatin to the Erbitux. That will depend on the reading of the PET scan from today. The MO is gone for this week, so I'm sure we won't hear anything about the PET results until next week.
On another note, I was surprised this week to find out that our sweet little niece is planning a fundraiser for Ron over Memorial Day weekend at Piggly Wiggly in Lake Geneva. There will be a brat wagon set up for three days, so if you live close by, come out and eat a brat for Ron!
There is not much more to report on his health. He is just very worn out, but he can't sleep for very long at a time, so he is up and down all day and night. I still don't think he takes enough of his pain medication, but he is stubborn! Even though I have had both Doctors and Nurses explain the pain cycle, and how much easier it is to control if you stay on top of the pain, and don't wait until you're in agony to take something, he will not listen. He may need a swift kick in the sore butt :)!
Sunday, December 21, 2008
Cancer times three...
Monday, December 8. Ron had his biopsy surgery today. He sailed through as always. The surgeon came out to talk to me, and said that there were actually two spots to biopsy, not one. One on the floor of the mouth, and another area on his right tongue, where the first cancer appeared. So that was a surprise. I didn't expect two areas. He could not do frozen sections right away as the area had been previously radiated, so he said that we should know in a day or two. Ron got back home and took it pretty easy for the next couple of days. It was again difficult for him to eat, as his mouth was pretty sore, so he stuck to liquids and ended up losing 3 pounds. The surgeon called on Thursday and said that only one biopsy had come in. The biopsy from the tongue was positive for SCC again.
Monday, December 15. We had an appointment with the Oncologist today. As I have said before, he is kind of bleak in his predictions for Ron's success. Well, this visit kind of floored us. He started by saying that if we do nothing, Ron would be gone in three months. Ron and I looked at each other in amazement. I'm sorry, but I just don't think he is anywhere near that point. He has no mets to distant areas. It is all located in his mouth. He then said that with treatment we would have at least a year. He wants to start Erbitux this week. If the chemo fails, we will be looking at entering a clinical trial. He mentioned Chicago, but if we have to do a trial, we are going to go up to UW-Madison. I have heard great things about them, and am still wondering if we should send his file up there and see if they would be more optimistic about his future. So of course, we left there feeling quite devastated again.
Tuesday, December 16. The Tumor Board met this morning to discuss Ron's case and give their recommendations. We had an appointment with his original surgeon. He came in and said "Well, what's going on? I heard they are calling a Tumor Board meeting on Tuesday." I said that was this morning, and he said "Oh no, I missed it. They even paged me, but I was in my office and forgot all about it." I smacked his leg with my little notebook and told him we were counting on him to give us the scoop on what the plan was. So he was no help with that, but he did start talking about using Cyberknife treatment, since Ron cannot have traditional radiation anymore. He wants to send us back to his brother, the surgeon who did Ron's first Salvage Surgery in September to see what he thinks. I wasn't thrilled about going back to him, but if he can offer a good option, I am happy to give him another shot. We left this appointment feeling very hopeful about the Cyberknife.
Wednesday, December 17. Follow up meeting with the Oncologist. Oy. Another downer. He came in and said that the Tumor Board discussed every possible option, and the concensus was that Ron needs another salvage surgery, along with Erbitux. The second biopsy from the floor of the mouth was also positive for SCC. Now, he had already told us a few visits ago, that no more surgery would help! I am very concerned about what this surgery would entail. I mean, they may suggest a total glossectomy (taking out the entire tongue), or placing a permanent trach, or even that he would no longer be able to eat except through a PEG tube. Ron said if that was the case, he would not want to do it. I told him that he has to be in charge from now on, not just blindly do whatever the doctors tell him. He has to decide what he can live with, and what he cannot. The Oncologist also said that he did not think the Cyberknife would be an option, but I had already made an appointment with an RO up at St. Luke's to discuss the option, so we are at least going to find out what he thinks. After we meet with the RO on the 22nd, we then have an appointment with the salvage surgeon. I will be very interested in what he has to say. If he is not being clear or not explaining exactly what will happen to Ron, I am going to insist he tell Ron what the outcomes could be. Whatever Ron is willing to do, I will support him in every way, but I want him to be clear about what he will and will not accept.
So we have the two appointments on Monday, then two on Tuesday, just blood work and an appointment with his general doctor for a physical, to make sure he can get a Port placed on the 30th. Oh, I forgot to mention, the Oncologist said that for now we are to "sit tight" on chemo! That upset me also, because the last visit he told us, this cancer is so aggressive and growing so quickly, we must start chemo as soon as possible. Now we are to wait until we find out what the surgeon thinks he can do. After these two rough days this week, we are then driving to my sister's in MO. again. We have such fun there, and we really need to leave all of this behind for a while. I will update with the suggestions we get tomorrow. Please pray that the Cyberknife is a possibility for Ron.
Monday, December 15. We had an appointment with the Oncologist today. As I have said before, he is kind of bleak in his predictions for Ron's success. Well, this visit kind of floored us. He started by saying that if we do nothing, Ron would be gone in three months. Ron and I looked at each other in amazement. I'm sorry, but I just don't think he is anywhere near that point. He has no mets to distant areas. It is all located in his mouth. He then said that with treatment we would have at least a year. He wants to start Erbitux this week. If the chemo fails, we will be looking at entering a clinical trial. He mentioned Chicago, but if we have to do a trial, we are going to go up to UW-Madison. I have heard great things about them, and am still wondering if we should send his file up there and see if they would be more optimistic about his future. So of course, we left there feeling quite devastated again.
Tuesday, December 16. The Tumor Board met this morning to discuss Ron's case and give their recommendations. We had an appointment with his original surgeon. He came in and said "Well, what's going on? I heard they are calling a Tumor Board meeting on Tuesday." I said that was this morning, and he said "Oh no, I missed it. They even paged me, but I was in my office and forgot all about it." I smacked his leg with my little notebook and told him we were counting on him to give us the scoop on what the plan was. So he was no help with that, but he did start talking about using Cyberknife treatment, since Ron cannot have traditional radiation anymore. He wants to send us back to his brother, the surgeon who did Ron's first Salvage Surgery in September to see what he thinks. I wasn't thrilled about going back to him, but if he can offer a good option, I am happy to give him another shot. We left this appointment feeling very hopeful about the Cyberknife.
Wednesday, December 17. Follow up meeting with the Oncologist. Oy. Another downer. He came in and said that the Tumor Board discussed every possible option, and the concensus was that Ron needs another salvage surgery, along with Erbitux. The second biopsy from the floor of the mouth was also positive for SCC. Now, he had already told us a few visits ago, that no more surgery would help! I am very concerned about what this surgery would entail. I mean, they may suggest a total glossectomy (taking out the entire tongue), or placing a permanent trach, or even that he would no longer be able to eat except through a PEG tube. Ron said if that was the case, he would not want to do it. I told him that he has to be in charge from now on, not just blindly do whatever the doctors tell him. He has to decide what he can live with, and what he cannot. The Oncologist also said that he did not think the Cyberknife would be an option, but I had already made an appointment with an RO up at St. Luke's to discuss the option, so we are at least going to find out what he thinks. After we meet with the RO on the 22nd, we then have an appointment with the salvage surgeon. I will be very interested in what he has to say. If he is not being clear or not explaining exactly what will happen to Ron, I am going to insist he tell Ron what the outcomes could be. Whatever Ron is willing to do, I will support him in every way, but I want him to be clear about what he will and will not accept.
So we have the two appointments on Monday, then two on Tuesday, just blood work and an appointment with his general doctor for a physical, to make sure he can get a Port placed on the 30th. Oh, I forgot to mention, the Oncologist said that for now we are to "sit tight" on chemo! That upset me also, because the last visit he told us, this cancer is so aggressive and growing so quickly, we must start chemo as soon as possible. Now we are to wait until we find out what the surgeon thinks he can do. After these two rough days this week, we are then driving to my sister's in MO. again. We have such fun there, and we really need to leave all of this behind for a while. I will update with the suggestions we get tomorrow. Please pray that the Cyberknife is a possibility for Ron.
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