dfourer

I used to live in Long Beach. One thing I did not have is a partner, and I was lonely. Only briefly in my life did I live with another man, and then we were 40 years old. All of us lived through the AIDS epidemic. I tested positive in 1985. having gotten through that, I thought surviving cancer was a bit much to wish for. I agree that my medical situation is similar to Michael's. Both had our first symptoms in bone. Both did not respond to EGFR type drugs (Tarceva/Iressa or Erlotinib/Gefitinib). Both responded to Alimta and Zometa+Alimta. It's possible that what works for one of us in the future will be predictive for the other. Same if one of us finds that something does not work. I will let you know if I try a new treatment. Avastin was a breeze. That's why I could take it for several years with few interruptions. The combination of Avastin and Alimta is harder to take than either alone, I'm told. After feeling healthy for a few years, I'm not happy about feeling less energetic and the prospect of continuing on this. Actually I'm tired for two or three weeks out of a 4 week cycle. Was supposed to be three week cycle and I cut back after I got a good response. Avastin effects my muscles. I like to exercise and I work with my hands (and my back, so to speak). My muscles ache, usually the next day after working. My blood pressure went up from only 100/60 to 130/90 or worse. That sort of upset me. It's come down, especially at the end of a cycle. I realize I've had a good ride, the last few years, and can't count on the future. I could be taking some awful medicine two weeks from today. On the other hand, I don't much think about it. I discovered that getting on with my life is not denial. I want to stay busy. One thing on my mind is to take a vacation and go backpacking or camping or canoeing or some out-in-the-country kind of thing. I will go when I find a suitable companion or group or tour to share it with. I had hip trouble and I limped, but it resolved when the cancer treatments worked. Much later, the cancer in my spine effected a nerve in my arm, but it has not been serious and it improved some. A couple of times I had really severe bone pain which just went away after another treatment. For a long time I could predict what the tests would show by how my bones felt. Last fall I had the opposite experience. I felt just fine when my Chest CT showed tumor groth, new fluid, and swollen glands. That's when I started Avastin, which reversed those developments. I never had a PET scan, only Chest CT's. I've had Bone Scans, which show places better and some worse. The most notable thing about all my experience was when I started Alimta in January 2005. I was taking Vicodin for bone pain in my neck, shoulder, hip, and leggs, every 4 hours, night and day. About 10 days into the new treatment, I woke up and had no pain at all. I didn't take another pill all day or all week. I sort of knew that this was a home run. It's also notable that the cancer has not spread to new locations since my diagnosis. That's my understanding. I wish you both good luck and good health. I hope we can stay in touch through ups and downs. David Fourer Chicago, IL

Now that I've written all the scientific stuff, I want to say thank you all for welcoming me to this site. On a good day I may be absorbed in my normal life, but I'm human. For the knowledge and for someone to lean on, this is a great place. By the way, the nurses at Robert H. Laurie Cancer Center (Northwestern Medical Center/Chicago) are wonderful. I always know they will be there for me in many ways when I need them. I fear less because they are there. I posted under the "buddy" topic because having a buddy in Chicago makes sense. I have felt a little isolated with all this. I learned that it's usually not a good idea to share about my illness with people I know. Even if I do, what can they say? with love, David

I read the radiology reports. Primary tumor had grown to 3cm, lymph glands swollen, and trace of pleural effusion--all bad signs. After two cycles of Alimta/Avastin primary tumor back to 2.5cm, lymph glands reduced in size, and pleural effusion not detected. That's what I remember, but it was 6 months ago. I was not feeling ill and was taking it calmly. About the dose. I read reports on the two large studies. --ECOG 4599 Phase III, Paclitaxia/Carboplatin in the United States (15mg/kg) --BO17704 AVAiL Avastin/Cisplatin/Gemcitobine study in Europe with (15mg/kg and 7.5mg/kg). I've been concerned about the drug burden on my system over as long a time as I've been getting chemo and other treatments. And I considered the possibility of missed treatments due to failure to tolerate drugs. And I was feeling well and didn't want to suffer. When I read that the lower dose got equal results in the 2nd study, with slightly lower side effects, I thought real seriously about starting on the lower dose. There was really no long-term data as all the enrolled patients are grouped together. Also there has been criticism in the press that Genentech and other companies want to avoid testing lower doses after the price of the drug is set (do a New York Times search). I'm not suggesting anyone copy my behavior. As far as I know, details of the AVAiL Bevacizumab(Avastin)/ Cisplatin/Gemcitobine study were never published. I assume it continued to collect long term date and secondary end points, but nothing published. Should I write to the authors and ask? It's been a year since the brief report at ASCO 2007 annual meeting. Here in Chicago (Northwestern Medical Center) there is a study of Avastin/Alimta going on. I've heard nothing from it. My doctor (Joyti Patel) says the combination has been hard for patients to tolerate and the dose is often lowered after starting treatment. I'm tired and my muscles ache on this regimen, but I carry on, pushing myself in atheletic activities. Towards the end of each cycle I feel better. I have a CT scan in 10 days. More comments welcome.

Living with stage IV in Chicago, IL north side. I am available to buddy, especially if there are some similarities in our experiences. I'm 53, single gay man who is currently in good health, knock on wood. I've had 45+ Alimta treatments and Avastin and others. I'm self employed as a gardener/landscaper/repair man. I am also HIV+ since 1985. I studied biology in college. I am interested in biology of cancer and cancer treatments. I try to be involved in my treatment decisions.

Hi. I'm 53 years old, and living with stage 4 lung cancer 4+ years now. Interested to hear from anyone with any similarities, to share experience and insight about treatments. I studied biology of cancer a lot during my first year of illness. I read latest published literature every few months. I'm also HIV+ for over 20 years. I've learned that knowledge makes a difference, though I don't know why I've lived so long. Living in Chicago, IL, gay, single most of my life, living with gay friends.