March 11, 2009 After a fast and furious battle with Pancreatic Cancer, Michael Lee Blanchard passed peacefully at home, surrounded by loved ones on March 10th, 2009 at 10:50am.He was a devoted father. A committed husband. A passionate lover. A cherished friend. An avid outdoors man. A self proclaimed pirate. A respected coworker. A trusted comrade. A larger than life personality. A stellar human being. He was many things to many people. More then anything he was loved by all. There will be a celebration of life at our home in the near future. More information to follow. Thank you all for your love and support. Kelly, Brad & Emily March 07, 2009Dad came home from the hospital Wednesday night with support from Hospice. After talking with his oncologist, Dad decided it was the best option. The doctors feel there is nothing more they can do and they ended all treatments to prolong his life. Although he felt ready to come home, the reality hit him hard when it came time to decide when to do so. We have had some special moments and talks together. We are all taking turns being with him. Dad's goal is to live out the last days in as little pain as possible and to be as coherent as possible so he can talk with and enjoy his family and friends. Hospice has given him the ability to do so.This email doesn't in anyway convey what an emotional time it is for everyone. We have begun saying our goodbyes. Those include some truly amazing moments. Dad has made it clear to us that he is touched by all the love and support everyone has shown him and we want to thank everyone for this support. If anyone has anything they would like to say to him now is the time to do so. He may not be able to talk on the phone but we can tell him for you. Dad is moving from a place of fighting to a place of letting go, knowing he is loved by many. Thanks, Mike's Kids February 28, 2009It has been a busy few days for us but we're finally getting out an update, sorry to leave you hanging. So, where we left you was when Dad had the Celiac Plexus Block. From what we are able to tell, the block was unsuccessful. Dad says there is less intense pain in one spot but he isn't quite sure because he is still in a significant amount of pain. Since then, Dad has become increasingly weak. He hasn't had an appetite for two weeks and he has been getting very little nutrition. He says it's an indescribable feeling of appetite loss, something that none of us can relate to. He feels that once he chews the flavor out of the food he just has no desire to swallow. Depression may also be playing a factor in to why he isn't eating. We all had our hopes up (especially Dad) that the block would be successful and Dad would have reduced pain, if not be pain free, but after a few days when the local anesthesia wore off we knew that it didn't work.On February 25th, we were worried that Dad wasn't getting proper nutrition. We spoke with the oncologist, Dr. Anderson, who said it'd be best to take Dad to the ER for a "tune-up" that included nutrition and hydration. Unfortunately, the hospital didn't feel that this visit was too serious so they gave him a bag of fluids, some new pain medicine and sent him home. We were mainly concerned with nutrition but the hospital felt that it was Dr. Anderson's responsibility instead. Despite this, Dad felt surprisingly better. That evening he was up, sitting by the fire, cracking jokes. Everyone felt he had returned to his usual self. The next day, we called to get Dad in for an appointment with Dr. Anderson's nurse practitioner to discuss nutrition. She informed us that ER's aren't supposed to be feeding people, though she thought it was strange that they didn't admit Dad. The blood work that Dad had done only a few days before came back showing that Dad is slightly anemic but not enough to receive blood transfusions. She told us that five Ensure's are enough to maintain current body weight. Up to this day Dad had been averaging one every two to three days. Dad has agreed to sip on Ensure because he has no desire to eat solids. She mentioned that we have a few options to ensure proper nutrition. The first being Prednisone. For those of you who aren't familiar with this drug, it is a corticosteroid that is typically used for reducing inflammation. It just so happens that some of the side effects include increased appetite, more energy and a euphoric feeling. Another option is a pill called Magasse that is prescribed solely for the purpose of stimulating appetite. The next more invasive option is to have a feeding tube installed. This would require many trips to the hospital for maintenance, which insurance may not even cover and his body may not even tolerate. Lastly, she discussed the idea of getting nutrition intravenously. They would have to install a port which would also require a lot of maintenance. She also made it clear that nutrition given this way is typically taken by the tumor before Dad is able to absorb it. As you probably assume, Dad was opposed to both the feeding tube and the port, and decided on the Prednisone. The nurse practitioner also mentioned some results of the PET/CT scan he received on the 17th of this month. The purpose of this scan was to pinpoint and tattoo the exact location where Dr. Hanahan, Dad's radiation oncologist, will be doing radiation. After reviewing the scans, it showed that there are spots in Dad's liver and lungs. Dad is currently too weak to undergo biopsies, but they are most likely indications that the cancer has spread to these locations. Brad asked the nurse practitioner an important question that we have all been wanting to know the answer to for quite some time and that was regarding Dad's prognosis. She stated that it's hard to gauge time but she expects he will live no more than two to three months or significantly less without nutrition. She felt it is best that we start seeking hospice and end of life care. She will set up an informational meeting with them sometime next week. Upon examination, the nurse practitioner noticed that Dad's abdomen was distended. Meaning that despite his significant weight loss, he has still maintained weight, or bloating in his abdominal region. She determined that this is build up of fluid in the peritoneal region around his stomach and liver and recommended a procedure called paracentesis to remove the fluid. She said just by looking at it that Dad probably had 2-3 liters of fluid build up in his abdomen. On the 27th, Dad received the outpatient surgery where they drained 4100mL which is 4.1L and equivalent to1.08 gallons of fluid. After the procedure and an instant 8.3 pound weight loss, Dad has a flatter stomach where you can even see some abs. He feels much better now not having to carry the weight and the pressure to his stomach. Yesterday, Dad ate a bit of cereal with banana for brunch and has been sleeping most of the day. While he was awake, his attitude was positive. As you can imagine, this has been an emotional few days for all of us. From our research and understanding we know that this is the natural process of this awful disease and that all we can do at this point is to keep our heads up, stay positive and give Dad all the love, care and comfort we can give him. As for the future, we are still going to pursue radiation, for the purpose of prolonging life and reducing pain. But first, we have an appointment with Dr. Ko at UCSF on Monday to see if Dad is eligible for any clinical trials. We are also in the process of getting hospice involved. They can educate us on how the next couple of months are going to go, they can provide us with nurses along with volunteers who can set up IV's for hydration and they have tricks to make Dad as comfortable as possible. Thanks, Emily & Brad February 12, 2009We had two doctors appointments yesterday. One was with Dad's medical oncologist, Dr. Anderson, and one was with Dad's new radiation oncologist, Dr. Hanahan. We like Dr. Hanahan. He is an older Navy doctor who worked with amputees during the Vietnam War. He has spent 30 years as a radiation doctor, and has experience with pancreatic cancer. He warmed up to us nicely and was very concerned for Dad and his pain. He talked to us about radiation as a treatment option and all of the procedures and issues that go along with it. He made it clear that it is not a cure and may only help alleviate pain and some of the other symptoms of his tumor. He says it typically works on about 50% of his patients with pancreatic cancer. Some tumors can be resistant to radiation. In the best case they hope to shrink the tumor away from some of the surrounding tissue (See: http://pathology.jhu.edu/pancreas/DiagMetastasis.php). Dr. Hanahan is most concerned with the celiac plexus (for pain), the lymph nodes near the duodenum and the bile duct. The tumor has already invaded the bile duct so he wants to try and shrink it off of there if he can. By keeping the tumor away from sensitive areas they hope to extend Dad's life a little longer.I asked him about radioactive isotopes as a treatment option. Radioactive isotopes are little pieces of radioactive material that are inserted into the body, into the tumor. He says that they are typically used with small tumors and only affect a very small area. Dad's tumor is 7cm across and is too big for the treatment. They may be an option to shrink the tumor away from isolated areas, but there are issues with them and he feels radiation is a better option. The treatment is called IMRT (See: http://www.irsa.org/imrt.html). It consists of several high-frequency beams that intersect and intensify on the area of the tumor and surrounding areas (See: http://en.wikipedia.org/wiki/External_beam_radiotherapy). Dad will visit the local cancer center five days a week for 10 to 15 minute treatments. They will fit him with a harness that will precisely guide the beams to the areas that Dr. Hanahan will specify. It can be very sensitive to weight changes so Dad fill get frequent CT/PET scans to make sure the beams are focused correctly. That said there is no clear shot to the pancreas. The stomach, intestine and surrounding areas will be exposed and this will lead to side effects similar to chemotherapy. Dr. Hanahan says that the radiation dosage will be a balance between effectiveness and side effects. He plans to treat Dad over five weeks. He also says there is a lag time of about a month before we will know if the treatment is helping. For now we are waiting to start the treatment until we have our consultation with UCSF on the 25th. Dr. Anderson has talked with Dr. Ko and found out a little more about the clinical trial at UCSF. Dr. Ko says that the trial is only applicable if the tumor has started to spread to other organs. They will image him to find out if this is the case. If not then Dad will start the radiation therapy on the 26th of this month. Dr. Anderson also wants to start Dad on a chemotherapy drug called Xeolda (http://www.xeloda.com). This drug is not used specifically for this type of cancer, but will add 5-FU (http://en.wikipedia.org/wiki/Fluorouracil) to his body which can make the cancer cells more sensitive to radiation. Dad will be getting a mild dose and so the side effects should be minimal. Dad also had his PICC line serviced. It would have been convenient to keep it for chemotherapy, but now it gets in the way. If Dad does not go on the clinical trial, he will have it removed. Dad had some reservations about radiation, as he did with chemo, but now he feels that it is the next step and hopes it will help with the pain. Dad has still been feeling well, although his appetite has been slow for the last 3 days. Dr. Anderson can prescribe a hormone to help raise his appetite, but thinks marijuana is a much safer way of doing it. Dr. Hanahan even recommended that Dad try putting marijuana in his food to give him a longer high and more relief. Dad is still active and doing well under the circumstances. The nurses at the cancer center even told him he looks a lot better. Tomorrow Dad is scheduled for his celiac plexus block in San Francisco at 9am. I expect the procedure to last all day. I'm not quite sure if we will be able to tell if it is working by tomorrow. It may take a little while for all the pain medication and general anesthetic to wear off. I will write a quick update tomorrow evening to let you know how it goes. Thanks, -Brad February 4, 2009Just want to give you a little update. Yesterday, Dr. Anderson called after speaking with Dr. Ko and he says that there is a clinical trial starting within the next couple of weeks that might work for Dad. Although, if he is not eligible for the trial, Dr. Ko still recommends radiation. Dr. Anderson says it will take a couple of weeks of set up for this, but we already have the appointment for the initial consultation with the radiation oncologist, Dr. Ralph Hanahan, on February 11th.Today, after a very frustrating two month battle for authorization, Emily quite literally handed the authorized referrals over to UCSF in preparation for his February 25th appointment with Dr. Nakakura and Dr. Ko. After discussing with UCSF and informing them that Dr. Anderson has already spoken directly with Dr. Ko, they might be able to get Dad an even closer appointment date than our already scheduled appointment...but we're still waiting to hear. And lastly, I spoke with Dr. Kefalides office who has scheduled Dad for the celiac plexus block next Friday, the 13th. Dad was happy to hear it. There is still no guarantee that it'll work but if there is at least a reduction of his back pain, he should feel a lot better and perhaps be more active. Dad is still eating well and his positive mood has not changed with yesterday's news. Unfortunately there is no cure for this cancer, even if he is able to get surgery. All of our actions have been to prolong Dad's life as long as possible and to keep him as happy and as comfortable as we can. Although we do not have a time frame, we are trying to give Dad the opportunity to live the rest of his life however he wants and not let the side-effects get in the way. He has been setting some goals of things he wants to accomplish over the next few months, one of these tasks is recording all of his war stories. We do want you all to know that we are not hopeless because there are still options, but there is a certain level of acceptance that we, as well as Dad, feel. Thanks, -Brad and Emily February 3, 2009Since Dad was released from the hospital last Thursday he has had four great days. He has spent most of his days outside, walking around and he even mowed the lawn for a little bit. He has had a good appetite and we have been able to stuff lots of calories into him. He now up to 212lbs. His spirits have been high and his sense of humor came back. Today we had a doctor's appointment and afterwards a chemotherapy session scheduled.At the appointment we talked with Dr. Anderson, his oncologist, about how he feels much better now that the stent was replaced and his digestive system is working again. Dr. Anderson thought this was good, but had some bad news for us. When Dad had his ERCP to replace the stent last Wednesday Dr. Kefalides found that there was bleeding in the bile duct around the existing stent. This along with the chemo was the cause of the anemia. The reason for the bleeding was that the tumor had spread to the bile duct and was bleeding into it. Dr. Anderson thinks that this is a sign that the chemo is not working at all. He says that if the tumor is resistant to these chemo drugs, no other chemo drugs are likely to work. For some reason this tumor is resistant to the toxins used to suspend cell growth. He has stopped Dad's treatments of chemotherapy. He told us that there are several more options: One option is to look for clinical trials at the universities. He thinks that UCSF, Stanford and UC Davis are the best places. He recommends we see Dr. Ko. Emily & I have already been working to get referrals to two UCSF doctors: Dr. Nakakura (A surgeon), and Dr. Andrew Ko (A medical oncologist). We have an appointment set up for Dad on the 25th of this month. We just need the referrals which I will be picking up today. Dr. Anderson is going to call Dr. Ko and see if he can get Dad in any sooner, and to see if there are any trials that might be applicable to Dad. Even if there are not any, Dr. Ko is a good resource and gateway to other universities. Dr. Anderson says it will most likely be difficult to get insurance to cover more than the initial appointment. Dr. Anderson says he will fight the insurance company and try to get him into any trials as soon as he can. Another option is radiation therapy. Dr. Anderson feels that this is not a good option because with the tumor spreading it most likely will not work. With Dad's tumor spread over a large area radiation will kill everything surrounding the tumor, which can be a major problem by itself. Radiation will also make Dad feel bad with nausea and tiredness. I asked Dr. Anderson about surgery at more specialized places like Stanford or The Mayo Clinic who claim to be able to operate on this kind of tumor and rebuild the portal vein. He thinks that because it is such a hard surgery, that Dad would never get his strength back and not survive for very long. We will discuss it with Dr. Nakakura as well. Dad asked Dr. Anderson about how pancreatic cancer patients pass. He told us that typically the tumor will get so big that the body can no longer feed it and everything shuts down. This is not painful and people pass quickly. It can also spread to the liver and cause liver failure. When this happens people generally slip into a coma before they pass. Sometimes it can spread to the nerves which can be very painful. Dr. Anderson says that if his is the case they have pain medication that is strong enough to cover it. We discussed the celiac plexus block that I talked about last update. Dr. Anderson wanted to make it clear that it does not always work 100%, but can help with a lot of the pain. He still thinks it's a good option. This news came as a shock to us, but Dad is accepting it well. So for now we will be trying to get Dad into clinical trials and talking to experts. While we do that we will also try to remove any remaining pain and get Dad's quality of life up as high as we can. He is growing stronger everyday and eating well and I think it will last for a good while. Please call if you have any questions. Thanks, -Brad January 30, 2009As you may have heard Dad was in the hospital again. This time for seven days. It started when Dad showed signs of dehydration right before his second chemo. The nurses spent an hour trying to find a vein for chemo. I had asked the nurses to give him fluids. They gave him some fluids, but not enough to completely re-hydrate him. The second chemo of the set is the hard one. Normally he receives steroids when he gets the chemo drug Cisplaten. The steroids give him energy and makes him feel better for three days. With the Cisplaten shortage he didn't get the steroids and didn't feel very well. It was hard for him to eat and drink as you might imagine.On Thursday of last week, two days after chemo, Dad wasn't eating or drinking. He had bad chills and started running a fever of 100.6. The chemo compromises his immune system and so any infection or cold is potentially serious. He had no energy and could barely stand. He slipped and fell in the bathroom. It wasn't serious, but he was weak and decided to go to the hospital. We tried to have Dr. Anderson's office directly admit him, but they wanted him to see one of their nurses first, and it would be four hours before they could get him in. We told them that wouldn't work, that this was more urgent, and we were going directly to the ER. We managed to get him to the car, but only after he fell again, this time on soft grass. At the hospital they admitted him and loaded him up on fluids. We told them he had shortness of breath and they ran all sorts of tests. At the hospital his temperature was normal, but his white-blood count was high indicating an infection. They did an x-ray and cat scan of his chest just to make sure he didn't have the start of pneumonia. A day later the test came back fine, there were no signs of pneumonia or blood clotting. This meant that the infection was somewhere else. The most likely area for Dad is around the stent of the bile duct. They gave him antibiotics just in case. The tests did show that he was anemic, and this would account for the shortness of breath and severe weakness. Anemia can be caused by both the tumor and the chemo. The tumor can interfere with bone marrow which produces red blood cells. Dad received three blood transfusions throughout his stay. Dr. Anderson, Dad's oncologist, visited us on Friday and told us that its common for cancer patients, along with re-hydration, to get regular blood transfusions. Dad will most likely get them when we take him in to get "tuned up" and re-hydrated. So far this seems like it will be every two weeks. We are starting to see a regular pattern and should be better at detecting it in the future. With anemia comes weakness, and sometimes depression. The day we brought Dad into the hospital he was feeling down and hopeless. We talked to Dr. Anderson about it and he said he could prescribe something, but he didn't want to unless it gets bad, and Dad agreed. After they started the transfusions Dad's mental state improved. Dr. Anderson also shared some other news with us. The scarce chemo drug: Cisplatin is now becoming available in small quantities. He will try to get some for Dad. At this point we have received the other chemo drug Tarceva, insurance had covered it, but Dad was not taking it yet. We felt it was best for Dad to take it when he is feeling well. Dr. Anderson said to wait to use it until Dad is out of the hospital. He doesn't want Dad to use it at all if he can get Cisplaten. He says there is no evidence all three drugs can be used together, or if it would help. Dr. Anderson was happy to report that the CA19.9 marker levels have started to drop. He had measured them at 185 but now they are down to 168. He didn't specify units, but the lower the better. He says it's a good sign but the bilirubin levels and bile duct problems Dad has had can affect it. After a few days Dad had been re-hydrated and had all of his transfusions and was feeling much better. We asked the doctors about how we can be proactive in preventing dehydration and the subsequent hospitalization. They said dehydration is caused by Dad not eating or drinking enough fluids. With Dad's insurance hydration therapy is available on an outpatient basis but it must be pre-approved by the insurance company which would require two days of advance notice. The doctors will look into setting it up for us, but usually we don't have two days notice and in that case the only thing to do is just bring him to the ER. Dad's insurance requires a referral for Dad to visit the ER. Dr. Anderson told us to call his office and he will do his best to get us one asap. We told him about the trouble we had this time and he told us to tell them it's an emergency. We talked to Dr. Kefalides, Dad's gastroenterologist, about getting a celiac plexus block. See: http://etherweb.bwh.harvard.edu/pmc/padmin/celiac.html. This should completely stop the pain Dad is feeling and allow him to not have to take as much pain medication. It works in most people but not all. Dad had a temporary block performed when he had the tumor biopsied in San Francisco on the 24h of November. That one didn't work, but this time they will use alcohol to kill the nerves completely. The hospital up here does not have the equipment required so Dr. Kefalides is scheduling Dad down in San Francisco for sometime next week. For a while Dad had a new pain in his back after he first went into the hospital. It was located around the kidney. They did an ultrasound to make sure it wasn't a kidney stone or something new. It came back clear and was probably just muscle pain from falling in the bathroom. It went away after a few days. During the hospital visit Dad made an effort to exercise. Dad walked 3 laps around the floor one day. He had no shortage of breath but was a little wobbly on his skinny legs. Dad has also been using a device to help strengthen his lungs. The nurses have had a very hard time trying to find veins to insert IV's. Dad's arms and hands have little scars from all of the places they have stuck him. They say that a lot of places have calcified and are no longer usable. We talked with the nurses and doctors about putting in a port which would allow them access to the blood stream without trying to put an IV in every time he has chemo or goes to the doctor. Instead they gave him a PICC line. This requires weekly maintenance that will be done at the cancer center. After Dad had been re-hydrated and transfused he felt a lot better but was still not able to eat anything. I talked with a dietitian and we discussed foods Dad could eat. The cafeteria is really bad at this hospital and I don't blame Dad for not eating the food, but he also couldn't eat jello or drink juices and drinks like Ensure. We thought the stent had gone bad again, but the doctors thought it was still fine. After a few days and a cat scan Dr. Kefalides told us that he thought it looked like the tumor was intermittently blocking the stent. He ordered a longer metal stent to replace Dad's current plastic one which can't collapse and is not likely to be blocked. He will need it temporarily removed if they do surgery or scan him with an MRI machine in the future. The stent took a couple of days to arrive and Dad opted to stay in the hospital until they could put it in him. He was not eating at all still and wanted to be in their care and he thought that by being there it would move things along faster. Dr. Kefalides replaced the stent on Wednesday without any problems. Dad was released the next day. Dad is home and resting now. He slept most of yesterday and is slowly starting to eat again. His appetite should pick up as the billirubin and bile levels drop in his blood. We will proceed as usual with labs on Monday & chemo on Tuesday. We have had a very busy couple of weeks and I have not been able to respond to everyone's calls yet. We get a lot of calls everyday and with Dad sleeping all the time we ask that if you are calling for information that you call Emily, Kelly or Brad instead of our home phone. Our numbers are available on the website: http://mike.linedef.com Thanks, -Brad January 16, 2009We have had a couple of appointments with doctors lately, but they have primarily been checkups without much new information. After Dad's admission to the hospital over Christmas his doctors wanted to make sure that despite the dehydration that he was ok. We talked to his primary care physician (Dr. M) and his oncologist (Dr. Anderson). We have made some progress and learned a few new things.We talked to Dr. M about the trouble we have been getting from his office in trying to get a referral to UCSF. He said he would look in to it. UCSF called us wanting more information on Dad, so we called all of the doctors and hospitals Dad has ever seen or been to and had them send over all the information they had on him. I talked with the person who deals with referrals at Dr. M's office and she says that the referral has finally been approved and now everything is in UCSF's hands. Emily is waiting to hear back from UCSF. We also talked with Dr. M about Dad's blood glucose levels. For the last week they have been steadily rising and are up to 330. Dr. M prescribed Dad Glimepiride which is a pill that will help lower Dad's glucose. The doctors want it back down into the 200's. Dad's billirubin levels have dropped since his hospitalization during Christmas and Dad started chemo again on the 13th. Everything went well. He was feeling better about the whole experience when he got there. At the end, six hours later, he was ready to leave. He will continue his normal schedule of 2 weeks on, 1 week off. I asked Dr. Anderson when he was planning on re-imaging Dad. He said that they typically do it every 3 months, and that it is not a good way to detect progress. He says that Dad's activity level and a blood marker called CA19.9 are the best way to measure progress. CA19.9 is a protein present in the blood stream and is regularly measured with weekly lab visits. It is naturally occurring and produced with bile. Typically pancreatic tumors produce a lot of this protein during growth and therefore the levels of this protein in the blood can be used to gauge the level of growth in the tumor. It cannot be used as an early detector, as abnormal amounts of it are only measurable once the tumor has taken hold. According to Dr. Anderson this is the best way to measure progress of chemo on the tumor. Dad's levels of CA19.9 are quite high. One reason for this is that when Dad's bile duct was blocked during Christmas the backup in his bile duct raised the level in his blood quite a bit. The levels are rising and Dr. Anderson is concerned that the tumor is resistant to the chemo. CA19.9 levels are slow to change in the body, typically with a lag time of about a month. We have to wait another few weeks before we can use it to accurately measure progress in Dad. When the levels start to drop we will know that the chemo is working. I asked Dr. Anderson about using radiation. He says that radiation cannot stop the growth of the tumor and can only kill it in a local area. Right now they are worried about the tumor spreading. As chemo stops growth and can help shrink it, it is the only option we can use right now. Dad is on two chemo drugs, Gencitabine and Cisplatin. Dr. Anderson told us that there is a national shortage of Cisplatin and they will have to stop treatment with it. He says it may be scarce for a month or more. He didn't give us a reason for the shortage, and I couldn't find any information online. In the mean time he wants to try a new drug called Tarceva http://www.tarceva.com. Tarceva is a drug that has been used with lung cancer patients, but recently it was approved by the FDA for use with Gencitabine to treat pancreatic cancer. It is a pill he will take everyday. Overall it might not help much as it only works on 1 out of 20 people and on average can add a week to the lifespan, but it's worth a shot. It can cause a severe rash in about 30% of the people who take it, but that may be an indication that it is working. The rash usually will go away within a couple weeks of taking it. The drug is very expensive at $2500 for a bottle of 30, but Dr. Anderson is fighting with the insurance company to try and get them to cover it. Overall Dad is feeling better. Our more strict anti-nausea medication regiment has helped a lot. Dad has not had any nausea even after chemo. He is eating well and has had no pain. He is still very weak and has a hard time walking. He spends most of his days in bed and has lost a lot of muscle. We are working with him to try and get him to stay as active as he can. We think it will be a lot easier for him to fight this if he is stronger and more active. His body can't heal itself so we have to rely on the chemo drugs to kill the cancer. Dad and Kelly bought a new California king size bed as I'm sure you know if you have tried to call him recently. He loves that thing and will certainly tell you about it. His spirits are high and he really feels like he can beat this thing. Thanks, -Brad January 05, 2009Sorry for the delay in the update. It has been a busy week for all of us but overall a good one. After getting re-hydrated, or "tuned-up" as the doctor put it, Dad happily returned home Sunday (12/28) afternoon. He was feeling so well in fact, that when he got home he took care of the bills and financial stuff, and had enough energy to open presents :) The hospitalist made it clear to us that to chemotherapy patients, coming to the hospital to get "tuned-up" will be a normal, ongoing thing. She also stressed that this is a process and it's ok for us to return to the hospital if he's having difficulty managing the side effects of his chemotherapy.One side effect from the tumor is that it is effecting the pancreas's ability to control insulin levels, therefore Dad has increased blood sugar levels. Because of this, we are having to keep an eye on it by monitoring Dad's blood glucose levels on a regular basis. His jaundice is another issue that we have been concerned with as well. Unfortunately because of the holidays, with many physicians being on vacation, there were no gastroenteroligists on call to see Dad while he was in the hospital. They did not treat the jaundice and sent him home. That following Tuesday (12/30), we had an appointment with Dad's oncologist. He was on vacation so we saw one of his colleagues, Dr. Wes Lee. He too noticed Dad's jaundice. Dad was supposed to have chemotherapy that next day but the oncologist was concerned that his billirubin levels were too high. High billirubin levels can interfere with chemo so chemo was postponed until the 13th. Dr. Lee also felt it was necessary to give Dad's GI doctor, Dr. Kefalides, a call to get a procedure set up with him to find out why his billirubin levels were high. The endoscopic procedure was scheduled for this past Friday and it was to make sure Dad's bile duct stent was still in place and to check out the surrounding ducts to make sure his liver was functioning properly. That Friday, Dad was scheduled for the endoscopy at 1pm, so naturally we had to be there at 10am for his pre-op and for Dad's favorite: more paperwork. Long story short, there were many emergency surgeries that required Dad's operating room. But the doctor knew how badly Dad needed this procedure to happen so he waited, along with us, until 5:30pm when he was finally able to operate on Dad. He found that the plastic stent that was placed back on November 17th, had started to break down and wasn't doing it's job anymore. So he put a stronger, metal stent in its place. He also did not find anything wrong with the surrounding ducts which was relief after the ER doctor over christmas told us that his liver was swolen. With this new stent in place, the liver will be able to do it's job better and Dad's jaundice and billirubin levels should reduce. Dad stated, even that same night of the procedure, that he feels better. He ate a surprisingly large meal after his procedure and slept well. He is feeling a lot better, eating well, having little to no nausea and his pain has been well managed. Dad's next project is getting a new, more comfortable bed. Kelly has been on the hunt and has found a winner. After this past week, Dad has been feeling even more positive that he will make it through this. As for our next project, we are going to continue to fight the staff at Dad's primary physician's office to get a referral sent over to UCSF in order to get a surgical consult. We have an appointment on Thursday to get it all straightened out. Friday we have an appointment with Dr. Anderson, Dad's oncologist, to talk about chemo and decide if it is too hard on Dad's system. He might step it back a bit with the hope of reducing Dad's discomfort and nausea which should help him avoid becoming dehydrated. Despite our frustrations with the lack of medical care during the holidays, it was really nice to have family visit, you guys were such a huge help. We hope everyone had a wonderful New Years! We are looking forward to a positive 2009, - Brad and Emily December 26, 2008I hope everyone had an enjoyable holiday. We have had a busy one...On Monday night, Dad enjoyed a nice big meal and time with friends. He had been feeling so good that he wanted to reduce his pain medication in order to have more energy. But later that night, after the remaining pain medication wore off, the pain got away from him. So much so that he wanted to go to the hospital. The on-call oncologist was informed and told Dad to increase his pain medicine. This got his pain was under control within the hour. Needless to say, Dad slept really well that night. As the week progressed, Dad had been eating less and less. By Wednesday afternoon, he was getting to the point where anything he'd put in his stomach, including water, would come up shortly after. He looked terrible too, seemed to have a green almost gray color to him. He felt that way as well, with very low energy, he could barely get up to use the restroom....we suspected dehydration. We called the oncology office and spoke with the nurse practitioners who recommended that we either wait until Friday to take him to a hydration clinic (remember Thursday was Christmas and everything was closed, including the clinic) or we take him to the ER. Of course, we didn't want to wait until Friday to take him to the hydration clinic, we felt it was best to take him to the ER that afternoon. In the emergency room, they took his blood pressure which was 89/56 and his pulse which was 109...clearly dehydrated. In the brighter light of the ER, we also noticed how off his coloring was, he had become jaundiced. They immediately set him up with a room in the ER, with large bags of fluid. After the first bag, it was apparent he was feeling better because his fiestyness was returning. They ran blood work, took x-rays and did a bunch of tests. We also saw a doctor who found from rubbing his abdomen that his liver is swollen. The doctor said that the jaundice and swelling of the liver were unrelated to dehydration. And when the blood work came back it confirmed that his liver isn't working properly. This could be the cause of the cancer itself spreading or the already existing tumor putting pressure on the liver but still unknown at this point. Therefore, he was admitted to the hospital. He has been receiving morphine pretty regularly and sleeping off and on throughout the day and night. He had an ultrasound Christmas morning relieving that the stent that was placed over a month ago is still in place and working properly. Which means that something else is causing a blockage and swelling of the liver. He has had a huge improvement in his energy, when we got to the hospital on Christmas he was sitting up in bed trying to decide what he wanted for dinner. We stayed with him all day noticing as the day progressed that his energy was increasing even more. We aren't quite sure how long he will be in the hospital for, in fact, currently he doesn't want to leave. Because of the fast acting pain and nausea medicine he can get in the hospital, he feels like he can properly get the care he needs there instead of at home. But when he does come home we will have a new pain and nausea medication schedule for him making it so he can eat and drink, hopefully, without problems. Besides controlling the pain and nausea, he will have to stay until we find out the results of the ultrasound and the plan of action. Now you guys know everything we know. We apologize for not getting this information out sooner, we have been in the hospital all day for the past few days, where we do not have cell phone coverage. Dad had a couple visitors: a gray hound named Badger and an Australian Shepherd named Ginger, who were dressed in bells and reindeer antlers. Dad has been so happy that his pain is under control that he doesn't mind talking "business" which includes bills and finances. Thanks, Emily & Brad December 22, 2008Not a lot of news for the past week. Dad had a doctor's appointment with his oncologist on Tuesday and his second chemo on Wednesday. The doctor checked Dad's blood work to verify that the chemo was not causing any serious problems to Dad's system. Chemo can be hard on the liver and the doctor said Dad looks fine. The doctor said that if the chemo shrinks the tumor it will probably take a couple of more weeks before we see any changes. The doctor said hang in there and this time is the hard part.Dad's chemo went fine. He couldn't get comfortable so they gave him a little morphine. You all know how much Dad loves staying in one place hooked up to machines for 6 hours. He hasn't had any side effects so far such as hair loss or bleeding. Dad has a week off from chemo and starts again next Wednesday. Some days have been bad days with nausea and pain, but most days were good. He has not had much of an appetite and as a result he is down to 218 lbs. The reduction of the pain medication should help him in this regard. Dad has been taking Oxycodone every 4 hours since the start of this and this week he reduced that to a couple a day. This weekend he also reduced his pain patch dosage by half. It makes him very drowsy and he doesn't want to lay in bed all day anymore. This is good news and so far he hasn't any severe pain. We hope it's a sign the chemo is working to shrink the tumor. We also want to give you an update in regards to getting a surgical consult at UCSF. Emily has lined up a physician, Dr. Eric Nakakura, but it's all a matter of insurance now. They do take Dad's insurance but because they are out of network we have to jump through hoops to get there. Brad has been working hard to get Dad's primary physician's office to get authorization for this referral. At one point we were under the impression that they had already done it and sent it to UCSF and now they are telling us that they haven't and that we need to get it ourselves. Despite this, we have had great communication with the staff at UCSF. The contact person there has been wonderful through out this whole process. She understands how time sensitive this situation is and has been pushing the primary care physician's office to get the referral. As we understand it, chemo can only improve Dad's chances of having a successful surgery. And like we stated earlier, all we can really do at this point is wait. Thanks for the support and have a Merry Christmas, -Brad & Emily December 10, 2008Today Dad had his first chemo session. It lasted for 6 hours and was here in town at a local outpatient cancer center. He was able to lay down in bed and sleep most of the time. They gave him a double dose of anti-nausea medication after he threw up 10 minutes before they started the treatment. The nurses were all very helpful and seemed to care. Dad felt fine throughout the process got home no problem. He had some nausea after the first hour home, but took some medication for it. He has 3 prescriptions to help with nausea.Monday he will have some lab work done and Tuesday the doctor will review that labs and let us know if the treatment needs changed in any way. It will probably be a month or so before we know if it is affecting the tumor at all. Dad will have to be re-imaged with a CT scan. Wednesday he has another 6 hour treatment. If the doctor does not need to change anything he will stay on his current treatment schedule of twice in a 3 week period. We are keeping an eye out for the long list of potential side-effects from the chemo and will let you know how it goes. Thanks, Brad December 09, 2008I hope everyone has seen the last email which talked about a web page which has all of these emails on them as well as current status. Navigate to http://mike.linedef.com to view.Last week was a busy week and that has been the biggest hurdle in getting out these emails. We had a doctor appointment every day of the week. We met with a general surgeon here in Santa Rosa named Dr. Woodbury to talk about removing the tumor. Dr. Woodbury said he would not recommend surgery at this point and we discussed talking with specialists at universities. He also told Dad about the survival rate (21% at 5 years). Dad was shocked to say the least. He thought that he would have another 5 to 10 years to fight this thing. As the week progressed he built up his hope little by little. Throughout the week Dad had a harder and harder time keeping food down. By Friday Dad felt the worst yet, but Saturday morning he woke up and felt he had turned a corner. He was able to eat, and a lot at that. His digestive track is now more normal. We had concerns that the stent in his bile duct had come loose, but Dr. Kefiledes and some lab work told us it was still in place and working. We had chemo training Friday and we discussed the medications and procedures for chemo. Dad will have chemo 2 times in a 3 week period at 5 hours a session. The first 30 minutes of each session will be just administering anti-nausea drugs. Dad also has 3 separate medications he will take for nausea. Throughout the week it has been hard to keep up with Dad's pain. He has been prescribed 100mcg of Fentanyl now and that seems to manage it, although he is drowsy. If the chemo works and starts shrinking the tumor then the doctors hope a lot of Dad's pain and symptoms will get better. Saturday & Sunday family came to visit and Dad was glad to see them. He is feeling a lot better than last week. Dad also started a new medication for his thyroid which should give him more energy. Dad has chemo tomorrow morning starting at 7:00 AM PST. Emily and I are following up with the experts (UCSF, Stanford, Mayo Clinic) in the hope of finding an experienced surgeon who will operate on Dad. We are making progress. UCSF has all of Dad's medical history and Dad's primary doctor has sent over a referral for insurance. Once the Nurse Practitioner has reviewed Dad's medical records, they will call to schedule an appointment. We are just waiting to hear back from them. The Doctor at UCSF that we are in contact with is Eric Nakamura. Emily specifically requested someone with experience in the Whipple procedure and according to the staff he performs them frequently. In the mean time we are all hoping the chemo makes Dad feel better and that there will be little to no nausea. If the chemo can shrink the tumor then he may be able to get surgery. If not one of the experts may consider it. So we are back to waiting. I think the news will slow down a bit as we work into a routine with chemo and the doctor visits. I plan on an email a week, but that may change if we hear back from the experts or circumstances change. Thanks, Brad December 02, 2008Sorry about the delay in the update. I know you are all anxiously waiting for news. We had a doctor's appointment this morning and wanted to include that information with the information we received yesterday. Dad woke up yesterday with severe and debilitating pain. Because of this pain he didn't think his was going to be able to keep food or water down and wanted to be admitted to the hospital. We had an appointment with Dr Rabkin, a pancreatic surgeon, down in the city at the same facility as Dad's endoscopic biopsy last week to discuss surgery options. We expected to have the surgery some time within the next week and Dad wanted to be admitted down there.We went down to the city and talked to Dr. Rabkin. He talked about the issues involved with the surgery and told us that in his opinion he did not think Dad is a good candidate for surgery and would not give his recommendation because the tumor has encased the portal vein (http://pathology.jhu.edu/pancreas/DiagMetastasis.php). He suggested that Dad get chemotherapy first to possibly shrink the tumor before considering surgery again. This came as a hard blow as we had all hoped we could walk right in, make an appointment, and get the surgery within a week. So far all of the doctors had been hopeful, but Dr. Rabkin was not. The doctor would admit Dad in the city if he felt he needed it. Dad decided he wanted to be in Santa Rosa and could make it back to the hospital here. On our way home the pain subsided and we went home instead. He decided he would go to the hospital the next day if the pain came back. We even stopped and got a large chocolate milkshake on the way home. We had calls in to all of his doctors to discuss pain management and the results of the appointment and Dr. Anderson's office, his oncologist, called back and prescribed us more Fentanyl to help with the pain. Dad was able to eat some food last night and was even up and about more than usual. Mom came over and made him some soup and brought over groceries. After the meeting with Dr. Rabkin we decided that we wanted a second opinion before we gave up on the surgical option. We did some research last night and found that some specialists would perform surgery and can reconstruct the portal vein. The Mayo Clinic in particular said that portal vein reconstruction does not significantly affect the success of the surgery (http://www.mayoclinic.org/pancreatic-cancer/portalveinremoval.html?mc-emref=y). This information gave us more hope for the surgical option. Dad had the best nights sleep in weeks last night. A combination of the higher pain medication and clean sheets from our new washer and dryer helped. He ate some food this morning and then we went to an appointment with the oncologist Dr. Anderson. We talked about chemo, pain management and about getting a second opinion. He said that he recommends getting an opinion as soon as possible and that he would start the process of getting Dad set up with chemo in the mean time. He stressed that with this type of cancer chemo may have no effect, but that if it does there is a good chance that the tumor can be shrunk and then removed. We may have some issues with getting the chemo drugs approved by Dad's insurance company, but we will have to wait and see. Dad's primary care physician called this morning with a referral for Dr. Woodbury a local doctor here in town that has experience with pancreatic cancer. We set up an appointment with him tomorrow at 2:00. Dad was delighted (note sarcasm) to hear that he would have to fill out another packet of patient forms. I think the count is up to 10. We have a lot of questions for him if he decides he can do the surgery. We are also trying to see if we can get a referral to one of the top specialists such as The Mayo Clinic or Stanford. On the way back from the appointment today Dad had a craving for fast food, but decided he just wanted Starbucks instead. When we got home he had a good portion of some Indian food that Sarah and I made the other day. This is good news. Dad is now resting comfortably at home right now. The sun is coming out and I think he wants to hop on his mower and spend some quality time in the yard. His spirits are high right now, and he doesn't have any pain. We will keep you updated as we get new information. Thanks for all your support, Brad November 26, 2008This
morning Dad was as feisty as ever. When Kelly and I took him to his
appointment with the oncologist, he filled out paper work that said the
best way to send him mail is via the Pony Express and when he wrote in
that he is retired he made sure to include a large smiley face as
well. We really like the oncologist Dr. Ian Anderson, who gave us a
lot of good information about treatment options along with surgery.
He is going to have Dad do chemotherapy either before or after he gets
surgery, but he says that chemo is a must to kill any remaining cancer
cells that are left after the tumor is removed. It won't be until
Monday when Dad sees the surgeon before we will know what the course of
action will be and when to start the chemo. We discussed side effects with the doctor about the chemo because Dad was really concerned that it was going to do more harm than the cancer itself. It turns out that the drugs he will be taking are very well tolerated; he won't lose his hair and the only side effects are nausea and fatigue. He also stated that many other pancreatic cancer patients feel better when they receive this treatment. He emphasized the importance of eating a high calorie diet and keeping active, that keeping in shape will reduce the side effects. Dad is feeling better about his pain management. The doctor asked him today if they needed to increase his fentanyl patch but he said it's good where it's at. There was much evidence of this yesterday evening. Dad was up and awake, laughing, eating, having a good time and enjoying everyone around him. Today, his plan has been to relax. He's also very eager to try the new washer and dryer we got for him yesterday. I hope everyone has a wonderful Thanksgiving. Dad, along with us kids are certainly thankful for our family and friends and all the support you guys have given us, so again, thank you very much. Enjoy the holiday, Love Emily. November 25, 2008This
morning Brad and I accompanied Dad to his appointment with his primary
care physician, Dr. Ken Murachanian. It was a good appointment, we
discussed everything from the next step to diet, pain medication and
yes, even pirates. The doctor recommend that we see an oncologist here
in Santa Rosa along with getting a surgical consultation with a
specialist in San Francisco. As of right now we have an appointment
with the oncologist, Ian Anderson, tomorrow morning. Both Dr.
Murachanian and the doctor who did Dad's initial endoscopy procedure,
Dr. Kefalidis, are in the process of lining up appointments with two
different specialists in the city. And thankfully, this afternoon, Dad
received a call from Dr. John Rabkin, a surgeon at Pacific Medical
Center in San Francisco, who has arranged for Dad to come up and see
him on Monday. All of us here have been so thankful that the doctors are treating Dad's case with the same urgency that we as family and friends feel is necessary. Of course it has been an emotional day but a positive day overall. Dad's mood has also been upbeat despite his continuous back pain. Dad still hasn't noticed any improvement with his pain since he received the nerve block yesterday, therefore, Dr. Murachanian has upped Dad's fentanyl patch, which will help regulate his pain and get it under control. That's all for now, we'll let you know how the oncology appointment goes tomorrow. Love -Emily. November 24, 2008
Dad had a procedure today to collect a sample for biopsy. The official
results are not going to be here until Wednesday, but the main doctor
from the procedure looked at the sample with his pathologist, under the
microscope and is certain it is cancer. It was an endoscopic procedure
which means they put an ultrasound & needle down through his mouth
into his stomach. The needle went through the stomach lining, into the
pancreas and collected a sample. The doctor said that the tumor was
probably operable and that Dad seems to be a good candidate for
surgery. The cancer does not appear to have spread to any large organs,
lymph nodes, or blood vessels. The main concerns with this cancer is
that it can invade the surrounding arteries and veins. The doctor said
it has only invaded one vein which might be able to be patched. This
is what makes him a good candidate for surgery. Dad has also been having a lot of pain and has been taking some pretty heavy narcotics for it. We asked the doctor about options to help, and he told us that he would put a block to deaden the nerves. He also said that there is only a 60% chance of it working. So far the pain relief looks to be functioning intermittently, but we will get a better idea in the morning. Dad is dealing with the results and needs time to sort through it. We ask that if you have any questions or concerns you ask Kelly, Emily or me on our direct phone lines or email (below). It may be a while before he is ready to take calls from everyone. Thanks, Brad November 21, 2008We've
had some good news today, Dad has had multiple phone calls from Pacific
Medical Center in San Francisco to get him ready for his procedure.
The doctor there will be doing Dad's biopsy procedure around 10am on
Monday. He also has an appointment with his primary care physician on
Tuesday. Dad wore himself out fixing the bathroom sink and has just
woken up from a four hour nap. Today has been a lazy day for all of us
and we're catching up on some much needed sleep. I hope everyone is doing well. Have a great weekend and we'll keep you updated :) Love, -Emily November 20, 2008
Good news tonight. The medical center in Petaluma won't take Dad's
insurance so his doctor has referred him to a pancreas specialist in
San Francisco. The medical center in San Francisco called us and let
us know they are trying to get Dad scheduled as soon as possible. We
expect to hear from them tomorrow, and we will keep you updated. This
will put Dad in the hands of someone experienced with this problem and
we hope that this will expedite the whole treatment process. Brad November 20, 2008The doctor called back this morning with the results. The results
looked abnormal and suspicious but were not conclusive. He will send
out the results to an outside group to confirm the results. This will
take the outside group 3 to 7 days to get results. He will do that
anyway. He said we can get quicker results down at Petaluma Valley
Hospital doing a pancreatic biopsy. He will take this to his staff and
set up the test and get back to us today, if not tomorrow with the date
and time. This will give us a conclusive answer if it is benign or
not. When he does the biopsy he can severely interfere with the nerves
in his back to stop the remaining back pain. Brad Dad slept well last night. He did not need any extra pain pills before
bed or during the night. He woke up this morning and had a nice
breakfast. The doctor called and let us know that the results will be
in between 4 and 5 PM tonight. He may call us tonight or tomorrow. We
will be on them about it as much as we can. I'm
going to start a mailing list to update everyone on Dad's status. I
will try to send it out as often as I can. If you know anyone else who
you think would like to be on the list please respond with their
email. If you have any questions email to mikestatus@linedef.com and we will answer as best we can. I will look into setting up an online forum for discussion.Dad made a comment yesterday that he did not expect as much support as he is getting. We told him he must be crazy. He is upbeat and his sense of humor is as strong as ever. Until this evening, Brad Update: Dad has been released from the hospital today and is now resting comfortably at home. All of us kids are here as well as Tenley & Mia. The hospital will contact us sometime tomorrow with the results of the biopsy & treatment options. We will keep you updated, Brad |