If you are reading this for the first time and want to hear the whole story, look under "BLOG ARCHIVE" on the right. Read the oldest blog first, starting with "The Diagnosis" in January 2009 (click on it) and continuing down. The blog you see below is the most recent and you want to read it last.
Saturday, February 27, 2010
Yesterday's CT scan was canceled because of yet another snow storm. So now I'll have to juggle the rescheduling with another chemo treatment on Thursday and see what they want me to do about the blood test which I suspect I'll have to do again. I had already taken two doses of the foulest smelling/tasting stuff on earth the day before the canceled CT. Oh well... could be worse. In the grand scheme of things I don't think it delays anything because the SIR Spheres haven't been approved by the insurance company yet. Carry on.
Tuesday, February 23, 2010
I’ll hold off on writing about the details of the SIR Sphere procedure until it gets approved by the insurance company. There’s no sense writing about something that may not even happen. I will however fill you in on all that is happening leading up to and in preparation for the procedure. Dr. Jabbour, the radiology oncologist, had a discussion with Dr. George, the Chemo Kaiser, and they decided it would be best to continue chemotherapy until it must be stopped for the SIR Spheres. I believe that Dr. George’s response was “We’ll find something to shoot into him” while she was holding a can of Drano. You’ll recall that several weeks ago we learned that the chemo regime I had been receiving has stopped working. So today I began a new regime with my 27th treatment. For those who are interested it consists of Cisplatin and Irinotecan. Cisplatin is a carryover from the last regime. Irinotecan, also known as CPT11, is new. Dropped from the cocktail was taxotere, 5fu and the leucovorin that “boosted” the 5fu. I think the 5fu was the nastiest of the drugs, the one causing the worst of the side effects. But I believe it is the one most responsible for giving me 16 more months of life. It’s also the drug that was delivered through the infusion pump that I had to wear for 48 hours with each treatment so I’m happy to be saying a great big FU to the 5fu. I’m hoping to have fewer side effects with the new regime. The most common side effect with the Irinotecan is diarrhea. If that’s true why don’t they change the name of it to “I ran to can”? As I write this I am realizing that I did not receive Herceptin today. I was of the impression that the Herceptin would continue so I’ll have to inquire about that. You may recall that Herceptin is an antibody originally approved for breast cancer that was added fairly recently because I tested positive for the HER2 gene. I want to make sure my breasts are taken care of. I had been looking forward to some time off from chemo but, truth be told, I’m kind of glad to be getting it. The SIR Spheres, if they help, will only help the liver. I still need to be keeping everything else in check. The new regime is a three week cycle, week one on, week two on and week three off. There is testing that needs to be done before the SIR Spheres, namely a blood test and a CT scan. Yesterday Dr. Nosher’s people called to tell me to schedule the CT scan which we scheduled for Friday. Then they told me the blood test had to be scheduled before that. I told them that blood is drawn for testing with every chemo treatment so since that would be today I would just tell them what other tests were needed and it could all be done at once. The scheduler said “great!” and I thought things were clicking. Not so fast. Dr. Nosher’s assistant then called to tell me the blood test had to be done at lease one day AFTER chemo, but before the CT scan, with enough time to get the results to the radiology people BEFORE the scan. What the hell? By my calculations that would mean they’d have to draw the blood while I sleep tonight. Anyway the good people at the chemo lounge agreed to delay taking my blood until tomorrow and we’ll hope it gets to the radiology people on time. If not the CT scam may be postponed. That would be inconvenient because the reason the blood test is important to them is because of what they saw on the last blood test. It seems my creatinine level is high. This is a measure of kidney function. For protection they prescribed a liquid for me to begin drinking the day before the scan because the scan is done with contrast. The contrast is injected and can damage the kidney. So I’ll have to begin drinking it Thursday morning not knowing for sure that I’ll be getting the scan on Friday. Do you think I’m going to too much trouble to try to live? I’m not sure I’m worth it. --------------------------------------------------
Wednesday, February 17, 2010
Terry and I spent much more time than we anticipated at The Cancer Institute of NJ and Robert Wood Johnson University Hospital today. It took long because we saw three doctors and they each gave us quite a bit of time. We were never rushed and I think we’d still be there if we had more questions because they would not have thrown us out. The end result of today’s meetings is that all the doctors agreed that I qualify for SIR Sphere treatment. I’m very proud of myself. I’ve been training for this for a long time. Oh sorry. I’ve been watching a lot of the Olympics lately. So all systems are go for me to get this fairly new procedure except for insurance company approval. That’s always a potential problem. They will begin seeking that approval right away. There are a lot of details that I’ll write about as time goes on. It’s a very interesting procedure. For now just a couple of things. First there are some tests I need to have done, namely another CT scan and blood test. Secondly this procedure is very specific to the liver. Thankfully that’s pretty much the only place there seems to be active cancer. There are two spots on my lungs but they are very small, not showing “hot” on the PET scan and all the doctors seem to consider them to be fairly insignificant. Lastly, it looks like I’ll probably get at least one more round of chemo before the SIR Spheres. Doctor Jabbour, the radiology oncologist, is going to talk to Dr. George my medical oncologist to see what she thinks. But we know what the Chemo Kaiser will say. She’ll probably come to my home that same day with pumps in hand yelling “hook him up”. There’s no guarantee that this will work (we’re told it’s about a 70% chance) and if it does it may not be permanent and if it is permanent the cancer can still appear somewhere else. But what we got today was all we could have hoped for; clearance from all the doctors to try. For that we thank God. So we’ll carry on. ----------------------------------------------
Monday, February 15, 2010
The Good: This past weekend marked the five year anniversary of Mark Richardson’s diagnosis. Mark’s diagnosis was very similar to mine. Like me, he was not a candidate for surgery. He was given three months to live. Mark has survived five years on determination, love and prayers with some chemo thrown in. There is a link to Mark ‘s story on the right side of this blog page. Carry on comrade. The Bad: Over the weekend John Hawker had to discontinue chemotherapy. John decided to go for quality of life and the chemo was not allowing that. It would have been nice if John was as fortunate as me and able to tolerate it longer but that was not the case. But don’t count John out. He decided to continue his fight on his terms, not the disease’s. His doctor sent a home health care nurse to disconnect him from his infusion pump. John then left on a trip to visit family. He left with a smile on his face. You can read about John by clicking here. Carry on comrade. The Ugly: This disease. It sucks. On a personal note this past weekend I enjoyed my son AJ’s visit to watch a movie with me and a Valentine’s Day visit to my daughter Heather. Where does that fit into the Good, Bad Ugly theme? None of the above; it was great! -------------------------------------------------
Friday, February 12, 2010
My approach to treatments has always been to proceed as quickly as possible. My thinking is that delay can only hurt. Many people, including doctors, have told me things like a week or two won't matter. I don't buy it. In response I ask them if 6 months delay would do any harm. They respond "yes". So I ask them if the damage is done on the 180th day or does it build up day by day. The answer is obvious. But sometimes we have no choice and that is the case with my pursuit of SIR Sphere treatment. The Cancer Institute of NJ was closed Wednesday because of the snow. I'm now rescheduled for next Wednesday. So I'll wait. In the meantime I have to deal with a domestic problem. The Oscar video is still generating comments and emails. It has gone to Oscar's head and he has developed a real attitude. See for yourself: What's the male version of Diva? --------------------------------------------------------------
Monday, February 8, 2010
Today Terry and I visited the Cancer Institute of NJ again. The purpose was twofold. One objective was to inquire about clinical trials. The second was to see if Dr. Poplin, a medical oncologist I saw there last May, thought it would be advantageous to try SIR Spheres rather than begin a new chemo regimen. I researched the possibility of clinical trials before today. What I found was that there are no phase 2 or phase 3 studies around here and even if there were I probably would not qualify as a participant. It seems that all the trials I found, including those that are currently recruiting and those that are not, exclude patients who have had previous chemo treatments. Phase 1 trials are used primarily to determine proper dosages. They use them to find out how much of a new drug can be tolerated by humans without much concern about how effective they are. Efficacy is determined in the subsequent phases. I would be very reluctant to enter a phase 1 trial at this point. Dr. Poplin said that they are taking part in a number of phase 1 studies. Thankfully she also said this was something for me to consider in the future. In other words not now. Dr. Poplin also gave us the best news I could have hoped for today; that pursuing the SIR spheres treatment is a good option at this time. Right now my disease is primarily limited to the liver so it makes sense to attack it there specifically. There is something going on in the lungs but it is small in size and not showing hot on the PET scan. She was not too concerned about it. SIR stands for selective internal radiation. It involves injecting microscopic spheres or beads through a catheter directly into the liver. The spheres contain a radioactive substance called yttrium 90. The physical presence of the spheres blocks the supply of blood to the tumors while at the same time slowly releases the yttrium 90 to irradiate them. Through precise placement they are able to do this with limited affect on healthy liver tissue. Enough science. This procedure is no longer considered experimental but is still very new. Dr. Poplin “cleared” me from a medical management point of view which is what Dr. Nosher wanted before accepting me as a patient. Dr. Nosher is one of a very few radiologists in the country who do the procedure. So now the plan is to see Dr. Nosher and a Dr. Jabbour who is a radiology therapist (I think) on Wednesday. Hopefully it won’t all get canceled because of the snow they’re predicting. There’s no guarantee the two specialists will agree that I should have the procedure and certainly no guarantee that it will work. If it does work it is probably only buying me time. It’s not a permanent cure. But today was a step in the right direction. I’m thankful for it. There are two personal points I’d like to make. Firstly, when this whole EC journey began my Aunt Barbara warned me that I should take control of my own care. She said I should not necessarily listen to any one doctor, to learn whatever I could and stay on top of everything that was being done. I agreed but I never realized how important that was. If I had not researched this on my own, after learning about it from another patient on a mail list forum, I doubt it would be a possibility at this point. Those of you who are fighting a similar battle and those of you that are going through it with them, don’t rely entirely on what you are being told without at least getting a second opinion. I must point out too that this is the second time I sought out this procedure because from what I read about it I felt the time was right. Secondly I think it’s important for anyone who is following my journey to realize how fortunate I have been. Today Dr. Poplin confirmed that I have gotten much more out of the treatment I have received than most people do. Many only last a couple of months. I’m fortunate that I have been able to tolerate it. I’m also fortunate that SIR spheres may be a viable option. I’ve said this before. If you are witnessing a miracle it’s nice to know what you’re looking at. My survival to this point has been miraculous; a blessing from God. I plan to show you more. Carry on. ------------------------------------------------------------------
Wednesday, February 3, 2010
There’s not much to report except that my research and investigation is progressing. I have been in touch with Dr. Nosher’s assistant Donna who has been extremely helpful. Dr. Nosher is the radiologist who does the SIR Sphere treatments. There is a chance that I am a candidate but Dr. Nosher does not want to “medically manage” me. He would prefer that I was recommended to him for the procedure. My oncologist, Dr. George, does not seem to be familiar with the process. I contacted Dr. Nosher myself. The plan now is to go back to Dr. Poplin at the Cancer Institute of NJ whom I saw last May. At that time she suggested the possibility of clinical trials but since my current treatment was still working I opted to stick with it. She also recommended taking some time off from the chemo which I did. Donna is sending my info to Dr. Poplin. I will try to set up an appointment tomorrow. I have also been researching clinical trials. This is not going too well. There are not many around and those that are seem to exclude patients who have had previous chemo treatments. They are testing the efficacy of new drugs as frontline treatments. I haven’t been able to find any trials for secondary treatments, either in the present or the past. I believe that may be because there is not a large population of patients who are in my situation. While researching I was again coming across all the statistics showing that most patients with my diagnosis don’t survive beyond one year. I’m beyond 16 months now. I can’t help but feel like my best bet is to convince Dr. Poplin that I am not one of the statistics. I feel like I have defied the odds so far and my chances would be good if I can get her to take some unconventional approaches with me. We’ll see. Emotionally I’ve gotten over the initial shock of hearing that chemo is no longer working. I knew it was coming sooner or later so now I just have to deal with this next phase. To quote another patient I’m going to be realistic and expect a miracle. Carry on. ------------------------------------------------------