Erbitux seems to be working!

I'm so sorry I haven't updated the blog for a while. It has been a crazy few weeks. Ron has now had four treatments of Erbitux, and while he has not broken out in pimples all over, his nose is affected. He also has the side effect of splitting skin and bleeding on his fingers. It looks very painful but he says it really isn't. We have applied a liquid skin on them, but it doesn't seem to do much good. We did have another tough emotional appointment with his MO last week before chemo. The Dr. came in and said "Well Ron, most people in your stage live only about a month. How long has it been since we started treatment?" We said three weeks and he said "Well then, you are doing well, my friend." The doctor also said that he will not add another chemo agent to Ron's treatment because he could not handle it at this point. After the appointment we went back to the treatment room and Ron sat in a chemo chair. He looked at me and said "What did he mean about a month?" I told him that it didn't mean he would die in a month, but that I thought it would be months, not years. He nodded and that was the end of the conversation. He proceeded with chemo while I ran some errands in town.
Later that night, my heart broke. Ron came in to the kitchen and said to me "So you don't think I will be here next year?" I just broke down and hugged him and said "Honey, I hope you are but I just don't know." Oh, this is so hard. He said "I thought if I had this operation I would get another year" and I said "Well, you should have but the cancer came back right away." He said "Yeah, okay." I felt awful having to say that but I can't lie to him. Bless his heart, he still has the attitude that he's doing pretty well other than having cancer! He has had some very bad days in the past few weeks. He is now on a larger dose of the Fentanyl patch, and he takes Percocet about every four hours for breakthrough pain. So far, this seems to be keeping his pain at a manageable level. He has also been fighting nausea fairly frequently. Sometimes he will vomit because he has started choking and coughing, but other times he will just vomit for no reason. As far as the choking we may be looking at a permanent trach again at some point because the cancer was shown to be wrapping around his trachea.
Believe it or not, there have been some very good times too. One payday, I looked online to see if my paycheck had been deposited. I knew it would not be a very big one because I have missed so much work lately. Well, to my surprise it was a full paycheck. My wonderful coworkers had AGAIN donated some of their sick days to me when the Administrative Secretary sent out an email. I am so blessed to be working there. I truly love my job and everyone I work with. On top of that paycheck I also discovered that Social Security had deposited Ron's back disability pay. What a wonderful surprise! We can definitely use it, not only for Ron's medical bills, but his medications and also to take a few small trips. We asked the MO if Ron could miss any chemo and he said absolutely not, so our trips will be short ones. Just to give you an idea of his prescription costs, after our last chemo appointment, we left with two new prescriptions. One for 10 Fentanyl patches in a stronger dose and one for Percocet tablets to replace the liquid Roxicet because I thought the tablets would be cheaper than the liquid. I sent our daughter out to Walmart with them, and she called and told me that they did not have the medications, so I told her to go to Walgreen's. I had purchased a drug card from Walgreen's for Ron because he has no prescription coverage with his insurance. This card was supposed to give substantial discounts. So after a while Emily called and said "Um, Mom, do you know how much these prescriptions are going to be?" I told her probably around $200. NO. The 10 Fentanyl patches cost $310. The 120 Percocet tablets cost $160. Close to $500 for two medications! And the Walgreen's drug card had saved me $30 on one and $40 on the other! I try not to even let Ron know what the drugs cost because I don't want him to feel like his meds are costing too much money. Whatever it takes, we will find it somewhere. Now we have a little bit of a cushion to fall back on.
We spent a wonderful weekend up in Minocqua, WI. Our son-in-law's Grandparents own a cabin up there so we were invited to spend a weekend with all of our kids. Now you know that once your kids have grown up, it is very difficult to get them all together for a vacation at the same time. The only person who could not come was our youngest daughter's boyfriend because he had a paper due for school and there was no internet access in the cabin. We went up early Friday morning so we got there at about 11 a.m. We spent that day out on Bearskin Lake and walked around Minocqua. It was a beautiful spring day. Sunny and warm. The other two days were not as nice, but we still had a wonderful time. We took along some old family videos and reminisced about the kids. It's always fun to embarrass the kids! Plans for the future include a day in Woodstock, IL. for my Grandma's 90th birthday, a short trip to Dyersville, IA. to a toy tractor museum that Ron has always wanted to see, and a weekend up in Iola WI. to celebrate our oldest daughter's marriage. She got married to our wonderful son-in-law this past October in a very small ceremony here, and now they are going to have a party up in Iola where Eric's family live. Ron also wants to go to Branson MO. to see Paul Revere and the Raiders at some point this summer. I talked my sister and brother-in-law into coming along. We will have a great time! Also coming up is a fundraiser for Ron at Piggly Wiggly in Lake Geneva. It is this coming weekend, May 23, 24, and 25 from 10 a.m. to 2 p.m. Come out and eat a brat for Ron! He sure wishes he could eat one himself! We appreciate all of your cards and prayers!

Palliative care...

"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!

Aftermath...

Ron's last day of treatment was October 28, 2005. While this day was certainly a cause for celebration, it was by no means the end of his problems. In fact, he actually had his worst days in the weeks following. He continued to be in a lot of pain, which meant he was still on the Fentanyl patches, also taking either Tylenol 3's or Vicodin. Now, this is not always explained to patients, but that many painkillers have a bad side effect of bowel impaction. I will try not to get too graphic, but I think caregivers should know that this may happen. Ron did, in fact, get impacted and I had to "assist" him in relieving it. Thankfully, I used to be a Nurses Aide, so I was equipped to handle this. It was not a pleasant experience for either of us, but when your loved one is in pain, you do whatever you can to relieve that pain. He had been taking stool softeners all along to try to prevent this, but they did not. So I'm just pointing out that this may happen. And, as you can imagine, that only adds to any other discomfort that is happening.

Ron also vomited more in the two weeks following treatment, for some reason. He lost a total of about 50 pounds by the time he was all done. He was still also going in for blood tests, and continued to receive Aranesp for low RBC's and Neupogen for low WBC's. I was quite worried at this point about his low immunity, and the possibility of him catching something from either myself, who works in a High School and is constantly around sick teenagers, or one of our own teenagers being ill. I think if he had caught even a common cold at that time, he would have ended up in the hospital. Thankfully, that didn't happen.

By the middle of November, his blood work started coming back in the normal range. He reached his lowest weight of 167. Before cancer, his weight was about 225. He had huge biceps from farming and a fair sized "beer belly", even though he didn't drink all that much beer. At treatments end, he had really no muscle mass left. It would be a long road to build himself up again. The first week of December, he had both PET and CT scans, and they both came back clear! YAY! Looks like all the pain was worth it.

The rest of December and January was spent with the Dentist and Oral Surgeon preparing his mouth for dentures. He had to have some bone shaved from his gums, and let that heal. He got his dentures February 1. His Port and PEG were removed on February 5, 2005. That was a good day, to get that PEG removed. As much as we know he needed it, it was a constant source of irritation to deal with. Two weeks after getting and wearing the dentures, he had a check at the Dentist, and he noticed a "spot" on the floor of Ron's mouth. He was told not to wear the bottom denture to let it heal. On March 1st, at another check, the Dentist found another "spot". Now he was sent to the Oral Surgeon, who in turn sent him to his ENT Surgeon that did the original surgery. It was decided that he could take no chances, so another surgery was done on March 13. Thankfully, it was completely benign!

For the next year, Ron went for CT and PET scans every three months. Nothing ever showed up on any of them, thank God. He continued to struggle with the teeth issue. He now only wears the upper denture, and that is usually only when I "make" him. He would be just as happy to not wear them at all, and can even eat steak with no teeth. Don't ask me how, I don't think I could do that! So 2006 was a year of adapting to a new normal, healing, getting clear scans, frequent doctor visits to make sure no other issues cropped up, and Ron getting back to full-time farming. Oh, by the way, his new hip was working great now, too! So glad he had that hip replacement.

Mid-treatment

Monday, October 3, 2005: Saw the Radiation Oncologist before his IMRT. Ron's mouth is full of small ulcers (called muscositis) from the radiation. Between the nausea and the mouth sores, he is finding it much harder to eat anything. Even drinking liquid hurts. The RO told us that now is the time to depend on the PEG tube to get most of his nutrition. The RO also started Ron on Triple Elixir to swish in his mouth before drinking or taking pills, etc. It consists of xylocaine to numb the area, Zovirax to heal the sores, and Maalox to coat the mouth and throat. Ron said it tastes horrible, so sometimes he just swishes and spits instead of swallowing it, but it does help numb the pain for a little while. He is feeling much more tired and spent these days. Because of his pain though, he does not sleep much. He is still only taking Vicodin or Tylenol 3 and then only when I make him. He is a stubborn one. He continues to do some chores, but by the time we get home from radiation, he is just worn out so he isn't doing the evening milking anymore. Thank goodness he farms with his brother, nephew, and our son.
Wednesday, October 5: Second Chemo. He is getting 20% less Cisplatin this time because his blood work is showing low WBC's and RBC's. This is not at all unusual--just another side effect of chemotherapy. If his numbers get too low, there are medications he can get to help.
Sunday the 9th, Ron is halfway through treatment! He is now down about 30 pounds. His bloodwork on October 12 showed an even lower WBC count, so he was given a shot of Aranesp. On the 14th I called and asked for a prescription for Ambien so he could get some sleep. He had a fairly good weekend. The following week passed fairly normally with IMRT every day, but his mouth was getting worse. He was getting more sores and now white patches also.
Monday, October 24: We saw a different doctor before radiation. He diagnosed Ron with thrush in his mouth, so he was given Diflucan for that. He also prescribed Fentanyl patches for the pain. This worried me a little because I know how powerful Fentanyl is, but it was a godsend. For the first time, I think Ron actually got some pain relief. He was also given Gelclair for his mucositis. These were little miracle packets! The Gelclair actually formed a kind of barrier in his mouth, which allowed him to drink and eat some things much easier. I was kind of glad we had to see a different doctor. I'm not sure his original doctor would have given him so much relief with that one appointment!
Wednesday, October 26, 2005: Last Chemo!! He is given 20% less Cisplatin this time, also. The following morning his blood work showed low WBC's again, so he was given another Aranesp shot. He also got his IV fluids. Friday the 28th was his last IMRT! He got a certificate for completing treatment, and got to ring the bell to celebrate the end! My sister actually came from a different state to be here for the occasion. She has been such a source of strength for me throughout this whole ordeal. She is an RN, and has been there to give sound advice when needed, or just to listen to me cry when I needed to. I could never thank her enough for the support and love she has given to all of us.
Now treatment is over...it's time to start healing!