dfourer

That's wonderful that he is doing so well. I want to know, did he have to get radiation treatment for the brain mets before doing Crizotinib? If so, how did that go? I am doing OK. I still need a nap every afternoon, and some of my symptoms still bother me. Most of the pain is gone and I am enjoying myself a lot more. David

Got results of study tests today (Crizotinib). Blood tests good all around. CT and MRI imaging of head, chest, abdomen, are mixed with small changes in either direction. Doctor says he's encouraged and pleased with the results, so I guess I should be also. My complaints about my health seem stable. I am taking life easy, but I do get out and do things. Lots of company Sunday. About 30 people for a pot-luck back yard event for the gardening club and other friends. I spent a few days getting the garden in shape, cooking, whatever. It was a big success. People helped clean up and I had little to do. In fact, I fell asleep as soon as the guests left. I usually take an afternoon nap. It's a sign that I am not as strong as I once was, but things could improve. David / Chicago

Hi, Judy. So where are the people taking Crizotinib? I hope you are feeling as well as you sound. I got in to see the doctor tomorrow. All concerns aside, I am feeling better than I was. Little pain, and I sleep all night. Today I fell asleep in the hammock. I am actually working some. Really very little, but it's nice. Sunday lots of company here.

Ned, Thanks for mentioning that you are doing well on Navelbine, since I have never taken it, and will be seeing the doctor tomorrow. Stay well, enjoy life.

ts, thanks for the note. I learned from the first link that there are drugs in development for people who are ALK pos but develop resistance to Crizotinib (AP26113, AP24534, ARIAD Pharmaceutical). It's always good to have something to hope for. David

I want to hear your experiences with Crizotinib (PF-02341066) I started Crizotinib on June 9, 2010. I had an immediate response, very dramatic, but after 26 days (July 6), I started sliding backwards. It was worth it for the very brief recovery. I have not had my first CT on treatment yet. Next week. There is a thread on this at the Inspire web site here: https://www.inspire.com/groups/lung-cancer-survivors/discussion/any-one-on-pf-02341066-crizotinib/ Ned, It is good to see your posts here. My sig is kinda long, but I'll leave it in since I have not posted in a while. David, Chicago

Good to hear from you too, Nick. I understand you are in Hawaii. It's really cold here in Chicago now. Single digits tonight, and windy. I hope you are enjoying life. I live for the days when I feel well and comfortable. Friends have shared those good days with me and given me more enjoyment. Take care. --David

A cautionary tale. I had an issue with pain that I want to share. I have stage-4 NSCLC going on 6 years. During that time I used small amounts of hydrocodone or morphine when I had pain. (history- http://www.lungevity.org/l_community/vi ... hp?t=37828 ) Recently I had severe pain from a lung tumor pressing on a large nerve in my shoulder, effecting my hand and arm. I no longer had any response to normal doses of pain medicine. I apparently developed tolerance to this class of pain medicine. I could not sleep or eat. I was hospitalized with severe pain and was sent home with morphine 180mg per day. That is a lot of morphine! A few days later I went to the emergency room complaining of breathing difficulty. After a few hours I declined to be hospitalized and went home, feeling better. Over the next two weeks I often complained of difficulty breathing. I told my oncologist and the nurses, but they could not explain it. I soon could not go far from my house, for fear of getting out of breath. I felt panic about getting out of breath, when walking or sleeping at night. I thought I was gravely ill. I noticed that the pain was gone and I was accidentally late on doses of morphine. This led to the discovery that skipping a dose alleviated the breathing problem. I was also noticing effects of morphine on various muscles. I concluded that morphine was inhibiting my diaphragm muscles and inhibiting breathing. I began reducing morphine. I planned to reduce morphine slowly, but it was easier to breath if I took less and less. During this time I took walks outdoors, climbed stairs without panic, and generally felt better. In 3-4 days I went completely off morphine. Pain was only mild. That led to some physical changes, good at first, and then bad. Withdrawal from morphine lasted 5-6 days. I felt lousy and generally exhausted. The pain has returned slowly but not bad. I don't take any pain meds now. I have an option of nerve-block treatment if the pain becomes severe again. I managed to stay on my chemo schedule through all this. I am building my strength, getting lots of exercise.

Judy, Checking in and I found your post. You signed Judy-in-Orlando instead of Key West. Next time are you going to be Judy-in-New-Jersey? I'm sorry to hear you are aching. I hope you are rewarded for you fortitude. I expect you will get "over the hump" and begin to feel a little better each day. I saw the doctor today and I'm getting by easy. I told the doctor that I'm spoiled. No treatment today. I don't know when I will have chemo, or what it will be. My energy level is pretty good. If I only work when I feel like it, and I always go out and work a half day or more, then I must be feeling well. In past years I did more physically demanding work and I've given that up. I have a problem with nerves in my left arm and hand and have to see a specialist. It's not a big bother (yet) but I have to take care of it. My fingers are getting numb. One result is that I had more tests, and the results have been good. The cancer is stable. The problem with my nerves could be collateral damage from cancer and it's treatments, and/or other things. I guess I judge my health not by what is wrong but what I can do. If I can stay awake, do normal things, work, and not be distracted by pain, then it's a good day. Also if I don't have to spend most of my time going to doctors and treatments. Lately it's mostly been good. David in Chicago

This is a great thread and I bookmarked it. Those of you who know me already know that I'm 4 years, 8 months stage IV Adenocarcinoma, 48 years old at diagnosis. I really liked reading all your posts. We have so much in common. Recently I've been worried about new disease. Just recently I gave up on the Avastin, with it's ill effects. That was tough because I had to make that decision on my own. My Blood and urine and other tests were OK but I felt awful and thought I had limited time left on Avastin. Decided to move on while I could still recover from the 11 Avastin treatments. I have symptoms that include bone mets and often low energy, and am waiting to start whatever the next treatment will be. Today I am strong. Had a long day today. Felt good. I even went for a swim in Lake Michigan, where the waves were very big for some reason. Call doctor tomorrow. I am anxious. For one thing, I just realized the problem in my left hand is a new bone met in my wrist. I wonder what the doctor will say. ****9/30/08 -- I learned that I have a cyst in my hand and it's uncomfortable but nothing to worry about. I think I have a decent chance to find another treatment that works and is tolerable. Actually I have no idea, but 3 of the 4 treatments I've done were new and not available when I was diagnosed. Also 3 out of 4 gave me relief from symptoms and varifiable response. I wish you all the best. David in Chicago

I'm checking in since it's been a while. For any who don't know me, I've been surviving "incurable" lung cancer and cancer treatments for 4.5 years. I don't have any complicating illnesses and I'm physically fit. I'm 53 years old now. Lately, Avastin has been hard to take. In fact, I only like it when I'm not taking it, because I skipped a treatment or was late. It seems to have slowly worn me down. The initial problems, like nose bleeds, don't bother me any more. Strange. What does bother me now is all my muscles ache, and not just right after a treatment. It's built up over time and it goes away slowly over time if I am off Avastin. I also get tired and need extra rest. I look forward to being a bad patient and not taking it again. Seriously, I hope to find out that there is a better balance between too much Avastin, and too much cancer. I've had 11 cycles. A lot of people here use the term "No Evidence of Disease," or NED. My doctor has never used that expression, and I'm not sure technically what it means. When I started Alimta in 2004, it was the first effective drug that I could continue taking seemingly forever. Before that, it was 4 cycles and then wait. Since Alimta, I was always on treatment, and still am. I wouldn't call it precautionary, I had cancer. I don't think the cancer went away, but just got under control. I was lucky that Alimta gave me few side effects. For the record, I've had 55 cycles. I'm new to the message boards, having arrived only a couple of months ago. I think reading your stories is helping me with some of the tough things about being a patient and facing an uncertain future. I try to read a few posts here each week, and Dr. West's columns on GRACE. I also occasionally check Medscape-Oncology/Hematology or just Google a few topics for news. Keeping up with the news has been easier with GRACE/OncTalk. Thanks for caring, and stay in touch. David in Chicago.

My doctor was nice enough to say that my cancer was "not curable, but it's treatable". She gave me a booklet about lung cancer to take home. Somewhere in the booklet, it said "stage IV, life expectancy 6 months." At the time, it was actually a relief to know what was wrong, even if it was lung cancer. Things have improved some since then. Some new treatments have come out, which turned out to be very good for me. I was 48 years old then and I'm 53 now. From reading this site, it sounds like adding the drug Avastin (Bevacizumab) to first-line chemo is not yet common practice. I think it may be soon. Something to look into. David in Chicago

Sharon, I'll start by saying the vacation was a smart idea. I think you will do well! Myself, I also need to know what's going on. I hope you have a doctor who can talk about medicine. It helped me to do some background reading. I had studied biology, but didn't know much about cancer. The biology from college was out of date just 25 years after I graduated. It was actually fun to read all the new stuff that had been discovered since I went to school. There is a good, short, 1988 paperback called "One Renegade Cell" by Weinberg, which was the first book I read. The same author recently compiled "The Biology of Cancer" (2006), a big and impressive work, got rave reviews, and requires some biology or chemistry background. Your reading may take you in a different direction, depending on your background and interests. I wish you many more happy vacations, and good health. David in Chicago

I never heard of Leroy Sievers until I saw his obituary Sunday. A television news reporter who chronicled his cancer illness on the NPR web site. Obituary: http://www.npr.org/templates/story/stor ... d=92028479 I read the last 3 months of his weblog. It was very inspirational, and the saddest thing I ever read. http://www.npr.org/blogs/mycancer/

Hi, Ned. I hope you are doing well. I describe bone mets as a migraine in my bones. Deep throbing pain. Moving around, standing, sitting, lying down, exercise, makes little difference. However, in the early stage, it always started when I wanted to rest or sleep. Usually in the evening. It was intermittent, leaving me alone for a day or two, then really bad for a couple of hours, then nothing for a day or two. Later, flare-ups often effected all the mets at the same time. The quiet periods got shorter and the pain more constant. A "bone scan" test confirmed the actual location of all the mets, and it precisely matched where the pain was. This is a whole-body radiology test that shows absorption of a radioactive tracer by bones. It shows any kind of bone disease or fracture as dark areas. It's painless and relatively safe. Joints, tendons, pulled muscles, do not show up. The first met, in the shin bone of my leg, was a little different. it started as a tender spot that was very sensitive and hurt badly if I bumped it. Later it throbbed like the others. Also, I developed some joint problems that were caused by the bone mets. That was totally exercise dependent. The throbing would sometimes start first, and the hip or shoulder problem would remain after. I've read that some people have reletively painless bone mets, until it causes some painful fracture or joint problem later. They would have quite different symptoms. Some people report relief from Zometa. When I started Zometa I could not tell if it was helping any. Later the chemo drugs helped, but did the Zometa also help? When I went off Carboplatin/Gemcitobine (the first chemo), but stayed on Zometa, all the cancer came back and bones hurt again. David in Chicago

This is one of my biggest contentions. I want my doctor to discuss with me intellectually, logically, the points where we differ. She brushes me off. I actaully have a pretty deep knowledge of biology and medicine, and getting better. That has helped me, especially when I really have to dissagree. We usually, almost always, agree, but the dissagreements don't get resolved in any sense. I have a BS degree in biology. I did a lot of background reading when I was diagnosed. I prepare well for doctor's appointments, often obtaining copies of peer-review publications on relevent topics.

I like reading about people who get along well with their doctor and feel that they are getting everything they need. My own situation is a work in progress. Keep the comments coming. Thanks.

My relationship to my doctor is difficult. I have to remind myself that nothing about having stage 4 cancer is easy. So, I want to hear other people's stories about working with their oncologist. I feel that I don't get enough medical information from my doctor. Apparently she doesn't believe in talking about medical details with patients. Sometimes she apparently doesn't trust me to follow instructions. Sometimes I don't trust her--to tell me the whole truth about my condition and my treatments. She does seem to have respect for me and my ability to survive, and I have respect for her scientific expertise. She is assistant professor at the medical school. We've been "together 4 1/2 years now. If she can't get objective data on my side effects from a blood test or an image, she wants to cover it over with a pain pill. She can get furious if I question the long-term safety of a drug she wants me to take. She offers psychological counseling or mood-altering or psycho-active drugs that I always turn down. When I want more information about my condition, I have to pin her down with specific questions, and then she talks in medical abbreviations and scientific jargon that is hard to understand. She talks too fast. She never volunteers an explanation of a medical condition. I look everything up when I get home, or before going in for an appointment. I think she is good at science but not so good at reading a patient. The nurses are better at telling if what I feel is serious, or just uncomfortable. The nursers have this instinct, they can read a patient as well as a blood test. They also get to know me better. During the infusions, the nurses talk and listen and really get to know me. Actually, we laugh a lot. We need to because there is a lot of reason for tension. If I met the nurse on the street, I would definitely stop and talk and say if I'm feeling well. With the doctor, of course it would be a little strange. Sometimes we do a dance around treatment decisions. She wants me to do something and I have made another decision. It's very awkward. We communicate through the nurses or the resident doctor (a doctor getting certified in oncology, studying under my doctor.) She is "brainy" and not naturally social, as far as I can see. That's not all bad. She has a wild side of her personality that I don't see much of, but it's reassuring to me to think that she would be a difficult patient if she were one. I've heard that she has a lot of admirers, and I wonder, am I the only one who has this rough experience? I see people in the waiting room who have traveled a long way to get a 2nd opinion here, or get treatment. You may wonder why I didn't get a new doc long ago. I got 2nd and 3rd opinions some time early in the process, and saw the best known and most revered people in the field. I wondered how much time they can spend with an average patient, being so well know. They recommended my doctor and agreed with the treatment plan. Other factors. I get immediate attention when it's important. That may not happen often, but I know I won't be kept waiting when time can make a difference. Also, the clinic is run very efficiently. I always check to make sure I get the right medicines, but in 4 1/2 years I've never caught a mistake. I'm a long time survivor. Some right calls were made. Truth is, we face some impossible choices. We are going to be unhappy some times. Like I said at the beginning, nothing about this is easy. I value the connection I have with my doctor, such as it is. She has put up with me this long and knows what I am capable of (I'm the guy riding his bicycle an hour each way to chemo appointments.) I wonder what it's like being an oncologist. How do they cope with all the death and dying? How close can a doctor get, personally or emotionally? I hope this post is not too long, and look forward to reading your experiences.

A year before diagnosis, I had a job I rather hated, with good income, good insurance, and good dissability insurance. I quit that and tried self-employment. It takes a while to make a "career change," and I was not sure how things would work out. In less than a year, I got sick from cancer and eventually was diagnosed stage 4. I took Social Security Dissability Income and spent some savings. Money was not really an issue, as my living expenses were modest. It was over a year before I was getting better and seriously thougth about working again. I realized that I was very seriously happy that I was not looking forward to going back to a job I hated. I would have been in a bind. I would want to be healthy, to exercise and live an active life, but want to avoid that job. Such a delemma could have kept me sick and eventually put me in my grave. I tried to get various simple, part-time jobs, and I'm very glad I didn't get hired. I went back to making my own business and working self-employed. I do landscaping and also home repairs. I bought an old truck and started looking for clients. I get much satisfaction from the work. In three years I've built up a business in the neighborhood and made friends. Who knew I would stay healthy this long? I don't get bored sitting at home. I work outdoors and get good exercise. I can take time off for treatments or illness as needed. I can take vacation and do the things that are important to me, because life is short. I report my income, pay taxes, and stopped getting Social Security payments, but the federal and state medical benefits are wonderful. I go to the best cancer center and never see a bill. Another benefit--because I chose to work, Medicare and Medicaid love me and take good care of me. That's my work story. David P.S. I would really like a stimulating, enjoyable, vacation. I took the time off but had no where to go this time. I've traveled in the past.

Carole, Your writing on LCSC has inspired and educated me. Thanks for the support. I'm not much good about writing about myself. Maybe later I'll have more to say. ---David

Just to let you know all is well. I'm wrapping up loose ends and letting go of work for a while (I'm self-employed part-time). Fiddling with my hobbies, visiting friends, just resting. I feel good. Travel is also a possibility, but nothing stressful.

I'm officially on vacation! Tuesday I rode my bicycle early in the morning 10 miles to get my 8:00am CT scan. I could tell that the effects of Avasting (half dose) and Alimta (80% dose) had finally worn off, after 28 days. I've been on this regimen for 7 1/2 months and I've been fighting the fatigue and muscle soreness most of the time. But Tuesday morning I was riding along on my bicycle feeling like my old self again. This morning I also took the bicycle. Two things were on my mind. The test results, of course. Also, could I, or should I, endure another dose of chemo? I made even better time riding to the doctor in downtown Chicago. Again it's early in the morning. I grab breakfast before my appointment. The doctor is smiling and seems happy to see me, but the discussion is frustrating as usual. My CT scan shows stable disease. That's a big deal, but my mind is already on the treatment decision. She thinks that spreading out my doses to lessen the side effects will give me a sub-therapeutic dose. But taking a vacation and "missing a dose" is OK. Also I should try some "energy pills" called Provigil (Modafinil), which I'm skeptical about. I agree to take today's treatment and then have a "vacation" next time. I have two conflicting interests. I think recovering from the medicine and building up my health is valuable, but I also worry about keeping the cancer under control. I'm thinking this over in the waiting room and I have second thoughts. I've been taking these drugs for over 7 months and I know their effects on my body pretty well. Then it occurs to me, I should take the "vacation" now. I go talk this over with a nurse, who I know pretty well now. It's much easier to explain what I'm really feeling and thinking to the nurse. She goes to clear it with the doctor. As always, relations with the nurses are relaxed and helpful. There's no stress and I often make lots of jokes. This time I'm feeling emotional, which is unusual for me. Around the nurses it's a safe place to get emotional. So I leave and get on my bicycle for the 60 minute ride home. I've had the needed 28 days to recover, so I'm really on vacation. Feeling well is the best vacation, but I might actually go somewhere too. I'd love to go hiking in some mountains somewhere. We'll see. David Fourer

I tolerated Alimta very well for 3 years. The combination of Alimta and Avastin has been harder. Fatigue, and muscle soreness following exercise. 48 years old and in good physical condition when diagnosed. More about me here:http://www.lungevity.org/l_community/viewtopic.php?t=37828

Wendy, Here's my take on it. The various responses of tumors seem to result from the random genetic mutations in cancer. We can't yet get a genetic or molecular "signature" of a cancer, to predict which drugs will work. We just try each drug. I've been kind of a one-hit-wonder. I got a really really good response to one type of treatment (Alimta). I got no response from Iressa, so I probably won't get any benefit from Tarceva either, since they work in much the same way. Avastin usually enhances the effect of another drug, in my case Alimta again, so I'm still really getting by on Alimta. I got some benefit form Carboplatin/Gemcitobine, so those type of drugs remain a future option, boosted by Avastin perhaps. I'm starting another thread on reading and books about cancer. http://www.lungevity.org/l_community/vi ... p?p=363586 Thanks again for all your support. David

I said a few personal things in my introduce myself post http://www.lungevity.org/l_community/vi ... hp?t=37828 here I'm going to write a little about the science stuff. I've gotten a little behind on my reading, but here is my all-time favorite books on biology of cancer. These books gave me a perspective, a way to understand the big picture. I needed a framework for understanding stuff. The more advanced books are incredibly complex and I got quite lost trying to keep the details strait. Just knowing how complicated something is can be helpful. --"One Renegade Cell", by Robert Weinberg, Basic Books 1998, 176 pages of easy reading, describes the modern theories of cancer in a historical context. --"The Biology of Cancer", 2007, Garland Science, also by Robert A. Weinberg. College/graduate school level text on the biology of cancer. 800 pages. Coherent coverage of a very large and complicated subject. Enough background material to make it accessible to non-experts. --"Molecular Biology of the Cell", 5th edition, Bruce Alberts and others. Everything about molecules and biology and genetics and chemistry and the mystery of life, between two covers. 1200 pages. Up-to-date. "In 1975, there were virtually no insights into the molecular alterations within human cells that lead to the appearance of malignancies. One generation later, we possess this kind of knowledge in abundance." --"The Biology of Cancer" Maybe others would like to suggest more reading. Until I found this site, I never had access to people's stories and medical histories. I think reading other people's experiences will help me make better decisions, including treatment decisions. I value and depend on my doctor very much, but I'm not comfortable letting her take all the responsibility. My body and mind tell me things that only I can know. Also, I have only one patient to concentrate on, and the doctor has maybe a hundred or two hundred, who knows. I thought this over, and I'm more comfortable making a mistake myself than if someone else makes a wrong decision and I could have taken responsibility. It's my life. I need to own the responsibility.