Just a quick update-Dan was finally able to start his lung radiation treatments today. We had hoped to start them earlier in the week, but our insurance company was dragging their feet. When we got to Twin Falls this morning we found out that insurance STILL had not approved the treatment, but Dan's doctor felt "confident" they would, and went ahead with the first treatment. Thankfully, Dan got a call later this afternoon that everything was approved, which is good because those radiation treatments aren't cheap! We really have been very blessed that Dan has great insurance. Treatment itself went really well, and Dan feels good. The doctor reiterated that Dan should have very few, if any, side effects. He has 3 more treatments next week and then his final treatment sometime early the following week.
Thanks for all your well wishes and prayers, they are much appreciated!
Jen
Thursday, January 30, 2014
Tuesday, January 21, 2014
Bumps In the Road Part 2
In trying to keep each posting from being the size of novel, I've broken up Dan's update into two postings. (Unfortunately as you will see, it is still the size of a novel…sorry!) If you are just logging on, you'll want to read the post below first. Picking up where I left off before…..
We came home from MD Anderson feeling a bit better about things, and with some hope that the tumor in Dan's lung could be treated. It was well worth the trip. The next Monday (two days before Christmas) Dan went in for his brain scan. He was scheduled to receive the results on January 2. That Thursday the doctor called to tell him the cancer was back, and the second tumor had almost doubled in size in the two months since his prior scan, to 2/3 inch. Surprisingly, I didn't get as upset as I would have expected. I think at that point we both realized that if the cancer was back in his lung, it was likely back in his brain too. We met right away with the radiation oncologist who showed us the scans and explained what was next. The tumor had quite a bit of swelling around it and Dan was beginning to get some mild headaches. Dr. Smith wanted to treat the tumor with radiosurgery, because the location of the tumor was too deep for standard surgery. Radiosurgery is essentially a laser beam of radiation that targets the brain tumor and kills the cancer cells. The goal is to be precise within a millimeter to minimize any damage to healthy brain tissue. The fact that Dan had swelling around the tumor was actually in his favor because it would push away the healthy tissue. Side effects are minimal-possible headache, tiredness, usually no nausea. There can sometimes be long term effects, such as loss of some feeling in limbs or other stroke like symptoms, but there is no way to know if that will happen. Those symptoms don't typically start to arise for 3-6 months after treatment and it all depends on how much healthy tissue was damaged. Dan got a cool astronaut type head brace/mold created and started treatment on January 30. He had three radiosurgery treatments over two weeks which went really well. He had a little bit of a headache a couple of days, but otherwise, had no side effects.
While all this was going on, Dr. Smith also discussed the possibility of radiation for his lung. MSTI (Mountain States Tumor Institute-the cancer center in Boise) does not have a machine that is capable of performing radiosurgery on the body. However, its satellite site in Twin Falls (about 1 1/2-2 hours from Boise) does. Coincidentally, Dr. Smith's father (who I will refer to from this point forward as Dr. Smith Sr.) happens to run the radiation department at the Twin Falls site. He has 30+ years experience in radiation oncology and was one of the founding doctors at the Boise MSTI location. When they opened the Twin Falls site, he headed down there to run it and lobbied to get a state of the art body radiation machine. Dr. Smith had already filled his dad in on Dan's case and they both felt he was a good candidate for radiosurgery to the lung. Two things had to happen first-Dan needed a PET scan (finally!!) and a respiratory test (to make sure there were no breathing limitations). A PET scan is a test they use to identify "hot spots" of cancer in the body. They inject a sugar solution in the body and since cancer cells feed off of sugar, any active cells will absorb the solution and show up like bright little fire spots in the body. You can't use a PET scan to determine cancer in the brain, heart, or liver because they all absorb the sugar regardless of if any cancer is present. Thankfully, only the two spots in the lung that we already knew about lit up. Dan also passed his respiratory test with flying colors so an appointment was made for him in Twin Falls with Dr. Smith Sr. for a consultation/planning of lung radiosurgery. All of this (brain radiation, PET scan, respiratory scan) happened over a two week time period.
Backtracking a bit, when we found out in November that Dan's cancer might be back in his lung we decided (with a little bit of pushing by me) that we needed to take a family vacation. It was something that I had wanted to do since Dan had been feeling better, but there is always something else to get done, or go do. Needless to say, the time was upon us that we just needed to go. So we planned a trip to the Hawaiian island of Kauai for January with our good friends the Teffts. Knowing that things were uncertain, we booked with travel insurance and the understanding that we may have to put the trip on hold depending on diagnosis and treatment outcomes. Thankfully, Dr. Smith was great about working Dan's treatment schedule around our one week trip. Dan finished his brain radiosurgery on Thursday and we left for Hawaii on Saturday. We had a great time and it was wonderful to get away, relax, and have some family time. The nice warm weather was a bonus!
We got home from Hawaii on Sunday and yesterday morning Dan and I headed to Twin Falls for his initial consult with Dr. Smith Sr. Things went well, we got all our questions answered and Dr. Smith seems like a really good oncologist. He treats 1-2 lung cancer patients a month and has a 92% success rate in eliminating the lung tumors. Dr. Smith Sr. did notice a couple of additional spots near the two tumors that look suspicious so they are going to radiate those spots as well. Dan will have 5 treatments over a 2-3 week time period (depending on scheduling availability). Side effects should be minimal like the brain radiosurgery-tiredness, possible developing of a dry cough (usually subsides about 1 month after treatment), little to no nausea. The doctor doesn't feel Dan will notice any effect on his breathing because his lung capacity is more than sufficient to cover the radiated tissue. As with anything, there is the chance that the radiation could cause more damage then expected but the very slight risks are still better than not treating it, or having to go through chemo. Dan should find out in the next couple of days what exactly his treatment schedule will look like.
So, what does that mean going forward? Honestly, we have no idea. Best case scenario? The radiation kills the brain tumor and lung tumors and Dan is once again cancer free. He has a follow up brain scan in mid February to check the status of the treated tumor. If the radiation does kill the brain tumor, Dan then becomes eligible for consideration in a MD Anderson clinical trial. In the meantime, he'll stay on the Tarceva and continue to monitor the existing tumors after treatment. With radiation, it can take several months for the tumor to die. The short term goal is just to make sure it is no longer growing.
You may be wondering why we waited so long to update everyone. Part of the reason is that we really didn't know what exactly we were facing, and once we did, we needed time to process it. The other issue was that all this came about right at Christmas and it seemed wrong to throw it out there with a "Merry Christmas, have a great holiday!" Now that we've had some time, and have a treatment plan, updates will be coming more regularly. I am hoping that we will once again get to point where updates aren't necessary because Dan is going great.
Many of you have asked what you can do for us and the best thing right now is to just keep praying and thinking positive thoughts over the next couple of months. Aside from being a little tired, Dan feels pretty normal. He is working and we are just moving forward with our everyday lives. We are so grateful for the many blessings God has given us in the midst of this situation, and for all the wonderful friends and family that we have. We love and appreciate each of you so much.
More to come soon,
Jen
We came home from MD Anderson feeling a bit better about things, and with some hope that the tumor in Dan's lung could be treated. It was well worth the trip. The next Monday (two days before Christmas) Dan went in for his brain scan. He was scheduled to receive the results on January 2. That Thursday the doctor called to tell him the cancer was back, and the second tumor had almost doubled in size in the two months since his prior scan, to 2/3 inch. Surprisingly, I didn't get as upset as I would have expected. I think at that point we both realized that if the cancer was back in his lung, it was likely back in his brain too. We met right away with the radiation oncologist who showed us the scans and explained what was next. The tumor had quite a bit of swelling around it and Dan was beginning to get some mild headaches. Dr. Smith wanted to treat the tumor with radiosurgery, because the location of the tumor was too deep for standard surgery. Radiosurgery is essentially a laser beam of radiation that targets the brain tumor and kills the cancer cells. The goal is to be precise within a millimeter to minimize any damage to healthy brain tissue. The fact that Dan had swelling around the tumor was actually in his favor because it would push away the healthy tissue. Side effects are minimal-possible headache, tiredness, usually no nausea. There can sometimes be long term effects, such as loss of some feeling in limbs or other stroke like symptoms, but there is no way to know if that will happen. Those symptoms don't typically start to arise for 3-6 months after treatment and it all depends on how much healthy tissue was damaged. Dan got a cool astronaut type head brace/mold created and started treatment on January 30. He had three radiosurgery treatments over two weeks which went really well. He had a little bit of a headache a couple of days, but otherwise, had no side effects.
While all this was going on, Dr. Smith also discussed the possibility of radiation for his lung. MSTI (Mountain States Tumor Institute-the cancer center in Boise) does not have a machine that is capable of performing radiosurgery on the body. However, its satellite site in Twin Falls (about 1 1/2-2 hours from Boise) does. Coincidentally, Dr. Smith's father (who I will refer to from this point forward as Dr. Smith Sr.) happens to run the radiation department at the Twin Falls site. He has 30+ years experience in radiation oncology and was one of the founding doctors at the Boise MSTI location. When they opened the Twin Falls site, he headed down there to run it and lobbied to get a state of the art body radiation machine. Dr. Smith had already filled his dad in on Dan's case and they both felt he was a good candidate for radiosurgery to the lung. Two things had to happen first-Dan needed a PET scan (finally!!) and a respiratory test (to make sure there were no breathing limitations). A PET scan is a test they use to identify "hot spots" of cancer in the body. They inject a sugar solution in the body and since cancer cells feed off of sugar, any active cells will absorb the solution and show up like bright little fire spots in the body. You can't use a PET scan to determine cancer in the brain, heart, or liver because they all absorb the sugar regardless of if any cancer is present. Thankfully, only the two spots in the lung that we already knew about lit up. Dan also passed his respiratory test with flying colors so an appointment was made for him in Twin Falls with Dr. Smith Sr. for a consultation/planning of lung radiosurgery. All of this (brain radiation, PET scan, respiratory scan) happened over a two week time period.
Backtracking a bit, when we found out in November that Dan's cancer might be back in his lung we decided (with a little bit of pushing by me) that we needed to take a family vacation. It was something that I had wanted to do since Dan had been feeling better, but there is always something else to get done, or go do. Needless to say, the time was upon us that we just needed to go. So we planned a trip to the Hawaiian island of Kauai for January with our good friends the Teffts. Knowing that things were uncertain, we booked with travel insurance and the understanding that we may have to put the trip on hold depending on diagnosis and treatment outcomes. Thankfully, Dr. Smith was great about working Dan's treatment schedule around our one week trip. Dan finished his brain radiosurgery on Thursday and we left for Hawaii on Saturday. We had a great time and it was wonderful to get away, relax, and have some family time. The nice warm weather was a bonus!
We got home from Hawaii on Sunday and yesterday morning Dan and I headed to Twin Falls for his initial consult with Dr. Smith Sr. Things went well, we got all our questions answered and Dr. Smith seems like a really good oncologist. He treats 1-2 lung cancer patients a month and has a 92% success rate in eliminating the lung tumors. Dr. Smith Sr. did notice a couple of additional spots near the two tumors that look suspicious so they are going to radiate those spots as well. Dan will have 5 treatments over a 2-3 week time period (depending on scheduling availability). Side effects should be minimal like the brain radiosurgery-tiredness, possible developing of a dry cough (usually subsides about 1 month after treatment), little to no nausea. The doctor doesn't feel Dan will notice any effect on his breathing because his lung capacity is more than sufficient to cover the radiated tissue. As with anything, there is the chance that the radiation could cause more damage then expected but the very slight risks are still better than not treating it, or having to go through chemo. Dan should find out in the next couple of days what exactly his treatment schedule will look like.
So, what does that mean going forward? Honestly, we have no idea. Best case scenario? The radiation kills the brain tumor and lung tumors and Dan is once again cancer free. He has a follow up brain scan in mid February to check the status of the treated tumor. If the radiation does kill the brain tumor, Dan then becomes eligible for consideration in a MD Anderson clinical trial. In the meantime, he'll stay on the Tarceva and continue to monitor the existing tumors after treatment. With radiation, it can take several months for the tumor to die. The short term goal is just to make sure it is no longer growing.
You may be wondering why we waited so long to update everyone. Part of the reason is that we really didn't know what exactly we were facing, and once we did, we needed time to process it. The other issue was that all this came about right at Christmas and it seemed wrong to throw it out there with a "Merry Christmas, have a great holiday!" Now that we've had some time, and have a treatment plan, updates will be coming more regularly. I am hoping that we will once again get to point where updates aren't necessary because Dan is going great.
Many of you have asked what you can do for us and the best thing right now is to just keep praying and thinking positive thoughts over the next couple of months. Aside from being a little tired, Dan feels pretty normal. He is working and we are just moving forward with our everyday lives. We are so grateful for the many blessings God has given us in the midst of this situation, and for all the wonderful friends and family that we have. We love and appreciate each of you so much.
More to come soon,
Jen
Bumps In the Road
When I last left you in early November I had promised that a one year anniversary/reflection on the year's events would be coming. And I had in fact begun to write that blog. During those two weeks as I wrote, reflected, edited, and reflected some more, Dan had his usual (every 3 months) chest CT. No big deal-things were going well. We went in to see his medical oncologist for the results on November 20 (One year to the day from his surgery) expecting to breeze in and breeze out with another follow up appointment set for 3 months down the road. The doctor walked in and matter of fact stated "something showed up in your lung on the scan". I felt like I had just been sucker punched in the gut. In retrospect, we should have expected it. Dan's brain scan the month before had picked up some activity in the second tumor (previous blog post) but we truly were still hoping/praying that it was just a brain bleed and nothing serious. Still, Dan was feeling fine and there were no symptoms. The doctor wouldn't come right out and say that the cancer was back. He said there were a couple of suspicious spots and that it was possible that it could be some scar tissue that had broken loose. Dan asked what was the next step and was advised that we just wait a couple months, stay on his chemo pill, come back in two months for another chest scan and decide what to do then. When pressed for more info, the doctor said that if in January it was determined that the cancer was back, chemo would be the next step. The doctor wished us a happy holiday (yeah right) and in a matter of 10 minutes, the appointment was done. We were devastated, and I began to panic. No way were we going to sit back and wait to see what happened over the next two months. I turned to Dan (and on the verge of begging) told him he was going to call MD Anderson in Houston that day. It was time for a second opinion, and thankfully he agreed. He called, had his records sent that afternoon, and by the end of the week we had an appointment with a thoracic (lung/neck) oncologist there in two weeks.
In mid December Dan and I flew down to Houston for his appointment. MD Anderson is an impressive facility. If you've never been down in that area, the campus in unbelievable. The sheer number of medical facilities is overwhelming. Every type of specialty medical care is within a few miles radius along with a hotel zone that rivals the hotels circling any major airport/destination. When you receive your appointment packet, you are given specific parking/lobby/elevator information depending on what doctor you are seeing. When we arrived I understood why-there are 10 elevators to choose from. Each goes to its own wing. They had probably at least a dozen volunteer greeters in the main lobby to help you find your way. It is a well oiled machine! Once checked in, Dan met with the Fellow that was working with his assigned oncologist Dr. Glisson. Both her and Dr. Glisson's knowledge of Dan's case was unbelievable. They knew every detail of what Dan had been diagnosed with, treated, results of all his scans, side effects, etc. We received a lot of useful information about the drug he is on (Tarceva) which explained some issues Dan was experiencing. They also explained that typically Tarceva is only effective for 10 months (which I had read), but that even with a recurrence of the cancer, they don't take patients off the drug. Through clinical trials they have found that staying on it keeps the tumor(s) growing at a slower rate, and can sometimes keep additional tumors from developing. MD Anderson also has a couple of clinical trials in which they are testing new drugs, in combination with the Tarceva, to increase the effectiveness. Right now they are showing a 50% success rate in stopping any additional growth in tumors. The biggest piece of information that we received was the confirmation from Dr. Glisson that it was in fact, not one but two, tumors in Dan's lung. The tumors were in the same spot where the initial tumor had been. The frustrating thing about that was Dr. Glisson called Dan's oncologist here in Boise and he agreed that it was cancer. Why didn't he just tell us that instead of telling us it "might" be scar tissue? However, Dr. Glisson suggested that the tumors could be treated with radiation instead of chemotherapy, since he had no other occurrence of cancer. That was the first that radiation had been mentioned for the lung and we suddenly had some hope. The side effects for radiation are much less severe than chemo. The next issue was to determine what exactly was going on in Dan's brain, because if you have any active brain metastases, you are not eligible for participation in a clinical trial. Since Dan was already scheduled for a brain scan the next week in Boise, Dr. Glisson sent us home to follow up with Dan's radiation oncologist, Dr. Smith. Once we knew the results of that test, we could make a plan.
In mid December Dan and I flew down to Houston for his appointment. MD Anderson is an impressive facility. If you've never been down in that area, the campus in unbelievable. The sheer number of medical facilities is overwhelming. Every type of specialty medical care is within a few miles radius along with a hotel zone that rivals the hotels circling any major airport/destination. When you receive your appointment packet, you are given specific parking/lobby/elevator information depending on what doctor you are seeing. When we arrived I understood why-there are 10 elevators to choose from. Each goes to its own wing. They had probably at least a dozen volunteer greeters in the main lobby to help you find your way. It is a well oiled machine! Once checked in, Dan met with the Fellow that was working with his assigned oncologist Dr. Glisson. Both her and Dr. Glisson's knowledge of Dan's case was unbelievable. They knew every detail of what Dan had been diagnosed with, treated, results of all his scans, side effects, etc. We received a lot of useful information about the drug he is on (Tarceva) which explained some issues Dan was experiencing. They also explained that typically Tarceva is only effective for 10 months (which I had read), but that even with a recurrence of the cancer, they don't take patients off the drug. Through clinical trials they have found that staying on it keeps the tumor(s) growing at a slower rate, and can sometimes keep additional tumors from developing. MD Anderson also has a couple of clinical trials in which they are testing new drugs, in combination with the Tarceva, to increase the effectiveness. Right now they are showing a 50% success rate in stopping any additional growth in tumors. The biggest piece of information that we received was the confirmation from Dr. Glisson that it was in fact, not one but two, tumors in Dan's lung. The tumors were in the same spot where the initial tumor had been. The frustrating thing about that was Dr. Glisson called Dan's oncologist here in Boise and he agreed that it was cancer. Why didn't he just tell us that instead of telling us it "might" be scar tissue? However, Dr. Glisson suggested that the tumors could be treated with radiation instead of chemotherapy, since he had no other occurrence of cancer. That was the first that radiation had been mentioned for the lung and we suddenly had some hope. The side effects for radiation are much less severe than chemo. The next issue was to determine what exactly was going on in Dan's brain, because if you have any active brain metastases, you are not eligible for participation in a clinical trial. Since Dan was already scheduled for a brain scan the next week in Boise, Dr. Glisson sent us home to follow up with Dan's radiation oncologist, Dr. Smith. Once we knew the results of that test, we could make a plan.
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