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

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--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.

Have a good vacation, David. I don't think there is a right answer to the question about when it's best to take a chemo vacation or if it's safe to do so at all. How about a 2 or 3 week vacation?

Rest up from the 7 mo. of chemo, ride your bike alot, and visit someplace interesting. If it were me, I'd go to downtown Chicago as I love the city. Guess you're already there.

Check in with us. If you will be away from your computer, go to the Hall Passes board and request a "hall pass." Otherwise, we'll all worry about you.

Muriel

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Dx NSCLC 5/03. Surgery UR lobe. Staged as 1B. Chemo (taxol & Carbo)9/15/03 - 11/13/03. Wonderful CTs until Nov 04. Surgery 11/27/04, again staged as 1B. Chemo (Cisplatin and Gemzar) 2/05 to 6/05. Good CTs and PET since chemo.

Please have an awesome vacation and hike and bike ride and whatever else makes your heart smile. You have done so well and I am so glad you joined this board. And thanks for replying to my posts re alimta...take good care on vacation..don't overdo it.

Sandra

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See my survival story at http://lungevity.org/l_community/viewtopic.php?t=39390

43 years old at diagnosis, wife and mother of 2 wonderful children (1 of each, 12 and 13).

March 2007-cough that wouldn't clear, gets progressively worse, can't sleep on left side by July 2007
August 2007-cloudy x-ray
Aug 27-finally a CT scan, and hospitalized, 3 litres of fluid on lung. Fluid drained, hospital stay, bronchs, mediastinoscopy, thorascopy. Had been told cancer earlier, not in fluid though. Tests done to confirm staging. Staging confirmed as Stage III A, later changed to III B.
Oct 4-PET scan for radiation planning.
Oct 17-Nov 28-30 radiation treatments
Oct 17 to Jan 11-4 rounds of chemo, cisplatin and etoposide
Jan 28-Ct scan/chest x-ray
Feb 12-doc said re CT scan "results are excellent, could possibly be a complete positive response!" Don't think it gets much better than that. I won't say NED yet....
Mar 18/08-NED!!!!! based on updated CT scan. Small pleural effusion left,difficult to tell, but rest is NED. And also cleared for START, liposome vaccine clinical trial.
April 3-1st day of vaccine, every week for 8 weeks, less frequently after that
-May 8-PET scan results, bone mets!!! Lungs still clear. Begin radiation/chemo planning. Off of clinical trial after 5 treatments.
-May 27 and 30, 2 radiation treatments, 14 greys total
-June 10-July 21-first 3 alimta infusion, also receiving zometa infusions separately
-CT scan results July 21-lungs still clear, back a mess, referred to a neurosurgeon for possible surgery
-Aug 13-1st gemzar infusion (stopped alimta, was intolerant and gemzar thought to be more effective)
Aug 16-MRI as reported pain in right leg, results were probable nerve damage from spine mets
-Aug20-end of first cycle of gemzar. Treatments stopped as was intolerant, too many side effects.
Sept 25-bone scan ordered by pain doc
Oct 3-started Tarceva, 150 mg
Oct 23 PET scan results-progression in spine and left lung with lymph node involvement-CRAP!!!!!
Nov 5-Tarceva down to 125 mg
Jan 20-failed bone cement procedure, pain worse
Jan 23-admitted to hospital for 10 days: full kidney failure, later discovered infection in chest which was lanced, identified dropped foot, off of Tarceva since Jan 20
Mar 31-1st of 10 radiation treatments to the spine
May 12-started navalbine

"Strength does not come from physical capacity. It comes from an indomitable will". -Mahatma Gandhi

"When the going gets tough, the tough get waterproof mascara" (assuming you have eyelashes left after chemo!)

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.

Hi, David.

I, too, am taking a vacation, albeit for different reasons. Nevertheless, I think it just as important to cleanse the mind as the body and what better way than a vacation (whether it be travel or a break from treatment).

Best of luck to you no matter what.
Carole

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01/07 Dx NSCLC IIIB Squamous Cell (5 cm. Grade 3 tumor RLL & right hilar & mediastinal lymph nodes). Underwent concurrent radiation & chemo, which decr. tumor to 2 cm., but by 12/07 tumor growing & lymph nodes growing & spreading. 2nd & 3rd line chemos bombed & by 07/08 tumor back to 5 cm. w/mets to liver, left lung & lymph nodes. No viable treatments left, <b>but</b> I'm still pain-free so me and <b>my tattoo</b> are still <b>Dancing in the Street</b> (http://www.youtube.com/watch?v=7y-x2fWKbmo)--figuratively at least! See <b>My Story: Quality of Life</b> at http://lungevity.org/l_community/viewtopic.php?t=36841.

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

David,
Enjoy that vacation, you deserve it
Barb

David:

Thanks for the compliments, but methinks you write more about yourself than you realize--not just articulately, but inspiring, too.

Carole
PS Technically I'm still out on "hall pass," but last of my company left today and hopefully in a couple days I'll be rested and back for "real"... at least until I start my "real" vacation.

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01/07 Dx NSCLC IIIB Squamous Cell (5 cm. Grade 3 tumor RLL & right hilar & mediastinal lymph nodes). Underwent concurrent radiation & chemo, which decr. tumor to 2 cm., but by 12/07 tumor growing & lymph nodes growing & spreading. 2nd & 3rd line chemos bombed & by 07/08 tumor back to 5 cm. w/mets to liver, left lung & lymph nodes. No viable treatments left, <b>but</b> I'm still pain-free so me and <b>my tattoo</b> are still <b>Dancing in the Street</b> (http://www.youtube.com/watch?v=7y-x2fWKbmo)--figuratively at least! See <b>My Story: Quality of Life</b> at http://lungevity.org/l_community/viewtopic.php?t=36841.