I had a lobectomy on 10/6, removed the lower left lobe, as well as some lymph nodes and a small section of the chest wall.

pathology came back good, margins on chest wall, while narrow, were clear, as well as nodes 5, 7, 9 and 10 - all clear.

my oncologist has recommended a 4-cycle regimen of cisplatin/gemzar - 21-day cycles, so both meds on day 1, and then gemzar on day 8.

additionally, i apparently am a good candidate for a phase III clinical trial for avastin - that would be 12 cycles, plus all the 'stuff' they do.

and the closer it gets, the more nervous and scared i get - i don't know what to expect, but get a lot of "you'll be fine, it'll be fine" from my parents as well as the oncologist.

anyone been on this regimen? can you share your experience? what you experienced, how the side effects were, how they were managed, were you able to lead a life, aside from chemo?

help?

_________________
9/11 Dx adenocarcinoma NSCLC 3A, age 53
10/11 Thoracotomy, lower lobe of left lung removed
11/11 first round chemo - gemzar/cisplatin/avastin

My husband did not have the same chemo combination you're starting with but he did have avastin down the road. Drugs are different for everyone - what bothers some people is a breeze for others. In general though it's important to make sure you drink a lot of water before, during, and after chemo. It will help immensly with the muscle aches and that flu like feeling you get from some drugs. The chemo will take the good cells too, so expect to have a tired day or two following chemo (for my husband it happened the 3rd day following). You can do this.

_________________
Life is what happens to you while you're busy making other plans.
John Lennon

"Never, never, never give up." Winston Churchill

"I rang for ice, but this is ridiculous." -Madeline Talmadge-Astor, as she was being helped off the Titanic

"Losing love is like a window in your heart, everybody sees you're blown apart, everybody sees the wind blow". Paul Simon

Husband John has NSCLC-Vena Cava Syndrome Stage 3B, Dx 6/02
Carbo/Taxol,Radiation
Taxotere
Gemzar
Iressa started 3/03
10/03 Stable CT scan
1/04 CT Still stable.
3/04 PET Scan, Still stable.
7/04 Still stable
1/05 Still stable
1/30/05 Iressa discontinued Started Tarceva, still stable 7/05
1/06 Slight increase in tumor, stopping Tarceva.
1/27/06 Started Alimta
5/5/06 Avastin added to Alimta
6/14/06 Stable, continue w/ Avastin
1/29/07 Shrinkage! Continue w/ Avasin.
7/07- Something new on the CT scan, doing a bronc 7/25/07 to see what it is. 8/21/07 begins brachytherapy. Next treatment postponed until 9/6/7 due to an infection which is making him too ill for the procedure. 9/13/07 Diagnosed with Aspergillus. Has brachytherapy 9/20/07. Developed a pericardial effusion, 10/30/07 has a pericardial window to drain the fluid. Procedure goes well but he passes away 10/31/07 due to a pulmonary hemorrhage.
Pic is me and daughter Jillian aka The Jillinator.
Visit Walk the Walk:
www.michiganlungcancerwalk.org

Just think of this chemo as an insurance policy. Listen to your doctor. It is a very short period of time that you will be on chemo, and a very long period of time after to enjoy your life.

Listen to Rochelle and drink lots and lots of fluids. And keep eating, Ensure, ice cream. How often do people tell you to eat as much ice cream as you like.

Keep us posted.

_________________
Ginny
Please use gdecoursey@aol.com for email.

Earl born 1/28/42 - dx 9/21/02 - died 8/18/04. He was the sunshine of my life.

I completely agree with Ry. Everyone is different, and someone that has had your chemo regime may react completely different from it than you did. My chemo was Carboplatin and Taxol. I felt good on day one and two. Day three to five were a bit raw. Tired, sore muscles, and nausea. The medications for the nausea helped a lot, but because of the platinum in the chemo, the food tasted like metal.

But it was tolerable, and ok. I did make myself eat, and even ice cream tasted like metal. LOL. But like Ginny said, it's a very short amount of time to be on it to allow you to live a very long amount of time.

"You'll be fine" must seem weak to you. But long term you will be. You seem to be a strong woman, strong in character and will. You will be fine.

Here's some things I did to help myself.

#1 - hair loss. I didn't mourn it. As soon as it started coming out, I shaved my own head (quite carefully LOL). I found a lot of really cute hats at http://www.tlcdirect.org/. They are not expensive and are very comfy. I did buy a wig, but it was a waste of money. It itched and was hot, and I hardly ever wore it.

#2. - constipation. Your doctor should recommend or prescribe a stool softener. Take it regularly no matter what. It works and will help you feel better.

#3. - nausea - Again your doctor will prescribe medication for it. Take it no matter what. If it does not work, let your doctor know because there are lots of different medications for that.

#4 - pain. You may or may not have pain. Most people don't, but I did. It was muscle pain. My body tolerated Vicodin well, so that helped a lot. Don't be shy about asking for pain meds if you need them.

It's likely you'll feel tired. Try to get as much sleep as possible. Naps are a good thing always

MI Judy

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

I had that chemo doublet after surgery. No hair loss, so don't get ahead of yourself on shaving! Mine did thin the month after treatment ended, but no one could tell but me and the shower. I did hate the stink from chemo, and could handle the scent of high quality soap and shampoo to mask it. Some can't.

Take the anti-nausea drugs and the anti-constipation drugs. Food tasted fine to me, but I mainly wanted chinese and indian food, and stuff like peanut butter toast, almonds, yogurt, and ice cream. Ginger is good. Try to walk daily (though I think you will be forced to be active with a family?) You will receive dexamethasone (a steroid) to help with the nausea. It may make you a bit hyper for a few days around infusion. Try to rest on those days anyway. You will likely experience a crash when their course is done, like 3 days after infusion.

Okay, that was my experience. I've known others to have almost no reaction to chemo - just would go right back to work. You'll have a better idea after your first day. The day with cisplatin will be long as they hydrate you at the same time (and you'll be using the sandbox all day long!) The gemzar only day was far easier for me - I would go to lunch afterwards. I worked part time for about half the time I was on treatment, and then decided I wasn't up to it. But we continued to walk and go out, visit with friends, go see movies. A good time to take care of yourself as best you can.

Don't hesitate to inform your oncologist or the nurse of anything you are experiencing. They can help with drugs, or even with a dose adjustment. This can include ringing in your ears, dizziness, neuropathy (numbness or tingling in your hands or feet) and other bodily delights.

A couple of weeks after chemo ended, we got on a plane and went to San Francisco and had a nice escape. We walked a lot, went to the museum, ate good food. Try to have something to look forward.

I hope that helps?

_________________
(photo: me in '61)
Female never smoked, 52 at diagnosis, otherwise healthy
09/08: false cardiac event = finding of 3 cm tumor upper right lobe plus two .5 cm nodes elsewhere on chest x-ray at ER
09/08: CTScan with IV contrast confirms.
10/08: Pulmonary referral for EBUS - bronchoscopy - confirms NSCLC - adenocarcinoma, with bronchoalveolar features
10/08: PetScan - further confirmation, classified T1N0MX (false negative) VATS scheduled.
11/08: full open surgery - revised to T4N2MX with positive spread to 2 lymph nodes, removed upper lobe with 3 cm tumor and partial mid lobe with (1) .5 cm tumor, 3 lymph nodes on trachea - 1 lymph node and margins negative.
5 night hospital stay.
12/08: Port-a-cath implanted
12/08: Brain MRI and hearing test - good other than minor high end loss in left ear
12/08: start (4) 21 day cycles of chemo - day 1 cisplatin and gemcitabine, day 8 gemcitabine alone, day 15 off - tolerated it pretty well - a little hair thinning and follicle inflammation, some ringing in ears and vertigo, much fatigue, and nausea. Kept my taste-buds almost intact.
02/27/09: completed 4 cycles of chemo!
03/03/09: removed port-a-cath
03/27/09: tattooed for radiation
03/30/09: start radiation (IMRT) 5x/wk for 6 weeks - fatigue, moderate esophagitis
5/08/09: completed treatment
6/22/09: NED
9/18/09: Recurrance in the liver and scattered in lungs. No symptoms. Rx Tarceva.
9/25/09: start Tarceva
11/20/09: clear lungs, shrinkage in liver.
2/24/10: still good on Tarceva
6/3/10: graduated to 6 month scan
12/9/10: new 6 cm tumor in liver
12/28/10: stop Tarceva
1/10/11: carbo/alimta/avastin
3/11/11: scan after 3 cycles 72%ish met reduction, stay the course
5/26/11: scan after 6 cycles, stable.
5/31/11: begin Avastin maintenance.
8/17/11: met growth, stop Avastin. Start Alimta.
10/25/11: met growth, stop Alimta. Wondering what to do next?
1/24/11: start hospice

I had that combination, too. Drink lots and lots of fluids. Fending off dehydration will help a lot.

_________________
Bud

Long distance cyclist and lung cancer survivor
56 years old at time of diagnosis in 2007, now live in Crowley, Tx
Nov 2007 - Tentatively diagnosed as NSCLC stage I from CT scan
Dec 2007 - Upper left lobectomy, biopsy showed one cancerous lymph node, changing the diagnosis to stage II (squamous cell)
Feb to Apr 2008 - Three rounds of cisplatin and gemcitabine
Apr 2008 - chest x-ray, NED
May 2008 - brain mri, clear
Jul 2008 - CT scan, NED
Dec 2008 - CT scan, NED
June 2009 - CT scan, NED
Jan 2010 - CT scan, NED
July 2010 - CT scan, NED
June 2011 - CT scan, NED
May 2012 - CT scan, NED
December 2012 - CT scan, NED. I am now a 5 year survivor!

June 2009 - Wife Rose diagnosed with breast cancer
Stage III IDC
Sept 2009 - Finished 4 rounds of chemo (AC)
Nov 2009 - Surgery
March 2010 - Finished 12 weeks of weekly Taxol
August 2010 - CT scan, NED
August 2011 - Checkup, NED
August 2012 - Checkup, NED
The rest of my story is at:

http://www.lungevity.org/l_community/vi ... hp?t=38841

My blog - uneasy-rider.com

Keeping hydrated is most important.

i realized today that i haven't been on here to make any updates.

as of yesterday, i have completed 2 of the 4 rounds of chemo.

i'm in the clinical trial, and randomized into the arm that gets the avastin.

and through an organization called "cleaning for a reason", i qualified for, and was matched up for 4 housecleanings (apartment, actually) - once a month for 4 months. they were here yesterday, and my apartment is lovely. i rented a rug doctor, and my son is going to help clean the carpets while it's nice and clean here.

side effects. the nausea sucks. seriously. it's worse after round 2 then it was after round 1.

chemo brain. i think i have it. i could have sworn i called my dad last night, got his answering machine, and left a rambling phone message what was just over 2 minutes (i looked at the phone when i hung up)

i talked to them tonight. apparently i did not leave a message. i talked to them.

i'm so confused, i think it must have been that my brains checked out for a while. i sure hope i didn't do any knitting!

so that's where i am. sort of dreading round 3, wanting round 4 to be over, dreading any more scans, and wanting the reassurance that there isn't any cancer growing inside me.

and i haven't had a cigarette for 13 weeks and 5 days.

_________________
9/11 Dx adenocarcinoma NSCLC 3A, age 53
10/11 Thoracotomy, lower lobe of left lung removed
11/11 first round chemo - gemzar/cisplatin/avastin

yeah congrats, Hang in there and THANK YOU for being a pioneer in Lung Cancer research! (Clinical trials make you that you know!)

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Thanks for the update! Think you are doing well. Don't worry about the chemo brain. I know a lot of folks who never had chemo that don't remember much more than I don't! LOL

I have finally accepted that my memory is no longer better than an inch worm and I tell people that. I used to get so upset about that, but no more. IT is what it is, and I do the best that I can with what I have. It's okay.

Judy in MI

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

Thanks for the update and congratulations on the no-smoking mark! The next two chemos will be gone before you know it and then you can begin to live life normally again. It's so much better to grin and bear the follow-up chemo. Since you are in a randomized trial, they will watch you closely so relax. Hope your chemo schedule lets you have an enjoyable Christmas.

Judy in KW

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.