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.
--May 2003 begin periodic severe bone pains in neck, legs, hip, shoulder. (48 years old)
--November 2003 severe bone pain continuous, can't sleep. Develop pleural effusion, shortness of breath.
--January 2004 diagnosed non-small cell lung cancer (adenocarcinoma) by needle biopsy. 2.5 cm tumor lower left lobe / bone metastasis. Also HIV+ since 1985. Didn't smoke.
--Winter 2004 carboplatin/gemcitobine, reduce dose after two cycles due to blood toxicity. Also Zometa 4mg every 4 weeks, Celebrex-discontinued in 9 months
--Spring 2004 feeling much better, only mild bone pain, breathing better. No treatments
--Fall 2004, much worse, start Iressa (gefitinib) 250mg daily pills, no benefit, worsening condition, Vicodin every 4 hr day and night for bone pain.
--January 2005 Alimta every 3 weeks. Dramatic benefit on day 10 after first infusion(!). No pain, no pain pills. Mild side effects.
--January 2005 surgery for pleural effusion (pleuradesis), 4 days in hospital, 4 weeks recovery
--Spring 2005 dramatic recovery, return to work, active life. continue Alimta every 3 weeks, Zometa every 6 weeks.
--New Years 2006 month-long vacation traveling in Asia, lots of exercise.
--Summer 2006 I had another serious but brief episode of bone pain, but CT image stable. 2007 occasional, infrequent, return of bone pain, also tingling of nerves in RT arm probably due to spinal damage. This resolves later.
--November 2007 After about 40 cycles of Alimta, CT shows clear progression of disease. I'm feeling well. Begin combo Alimta and Avastin (7.5 mg/kg Avastin at my request). next CT shows overall improvement.
--January 2008 Feeling tired after treatments. Nose bleeds and anal irritation. Reduce to every 4 weeks, then reduce Alimta by 20%. Tolerating treatment better. Continue with work and active life mostly.
--July 2008 Continue effective treatment. Muscle and joint pain. Take break from treatment. No bone pain for last 8 months.
--September 2008 Off treatment due to side effects (muscle/joint pain, tire easily); wait and see.
--November 2008 Tingling in left hand becomes severe pain and loss of muscle strength. MRI reveals 2cm pancoast tumor in my shoulder, surrounding nerves and artery.
--November 2008 Ten radiation treatments to neck. Chemo planned. Narcotics for pain in hand.
--Dec 2008 Chemo put off when chest CT looks good.
--Jan, Feb 2009 Muscle strength in left arm returning, pain decreasing, feeling better, slowly reduce pain pills to none. CT scan shows slow progression of cancer, Start Alimta and Avastin again. Staying home and resting more.
--April,May 2009 Tolerating treatments OK. Chest CT shows stable disease. Working part-time, slowly getting stronger, and enjoying springtime in Chicago.
--July 2009 begin Taxotere weekly. Pain in my left arm, inguinal area, and a little under weight. Resting more.
--Sept 2009 begin carboplatin/gemcytobine. Dx slow progression. Now there are numerous small tumors, including liver, abdomen, rt-lung.
--Oct 2009 Return of pain in left arm. Little response to hydrocodone, morphine. 3-day hospital stay. 180mg morphine per day controls pain, but causes difficulty breathing. Kick morphine completely after 3 weeks. No pain medicine. Pain is much reduced.
--Dec 2009 Feeling better, still on Carboplatin-Gemcytobine, stable. Getting exercise daily.
--Mar 2010 Increased pain left arm, no morphine, difficulty sleeping, loosing use of left hand.
--May 2010 ALK fusion test positive at alternate lab (Genzyme), not qualified for trials.
--Jun 2010 Begin Crizotinib, Pfizer phase 2 trial. Much relief of pain and other symptoms. Fatigue from new drug, loss of appetite. Tumors discovered in both eyes, but responding to treatment and no eye symptoms.
--July 2010 Slipping backwards on Crizotinib. Pain slowly returning, swelling in feet. Much less fatigue, working part time and enjoying life. Radiology images mixed with little change at six weeks.
--Aug 2010 blood clot Rt leg, no pain. Edema left leg. Begin Lovenox and Furosemide. Staying active, working part-time.
--Oct 2010 considerably more pain, serious paralysis/atrophy left arm, using some morphine, Ibuprophen. Resting more. Scans still negetive for progression
--Dec 2010 Stop Crizotinib trial, based on scans and symptoms. Start Gemcytobine. Brain biopsy of slowly growing 1cm lesion, negative for cancer or infection.