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 Post subject: Should my Mom have PCI?
PostPosted: Thu Feb 24, 2011 10:22 am 

Joined: Wed Feb 23, 2011 11:32 pm
Posts: 2
My Mom was dx in Dec 2010 with SCLC. She has has 4 rounds of Chemo and 25 days of radiation. After her first scan, the doctor told here that the spots on her lungs are almost gone. She is responding really well to the treatment, She still has good days and bad, and she has even managed to eat and gain weight. The whole family in unsure about her having the PCI. I know its best to listen to professionals when it comes to advise about treatment, we just don't know if radiation to the brain is safe. She would like her quality of life to be good. I have heard stories about permanent hair loss, memory loss and just an all around bad side effects from PCI. Basically my questions is to those who have has SCLC who have and have not had the PCI done. She doesn't was to fix whats not broken, so to speak. Any information about side effects and success stories would be great.

PostPosted: Thu Feb 24, 2011 10:52 am 
Director of Support & Advocacy, LUNGevity
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Joined: Thu Jan 09, 2003 11:09 am
Posts: 15199
Location: Texas
So right now your mom doesn't have brain mets?

I'm sure there will be some advice and shared experiences soon.

Hang in there. I'm keeping you both in my prayers.

PostPosted: Thu Feb 24, 2011 11:19 am 
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Posts: 2542
Location: Hawaii
Hi, welcome to LCSC. As you may know, PCI is generally recommended for anyone with SCLC, and this article from an oncologist at GRACE (Global Resource for Advancing Cancer Education) explains why:

http://cancergrace.org/lung/2010/08/07/ ... ng-cancer/

While you're at GRACE, you can browse the numerous articles and comments and forum threads about SCLC and PCI, and ask your own questions which are typically answered by a lung cancer specialist in less than 24 hours. Best wishes and Aloha,


Ned is just my nickname, though it would be nice to merge it with the other meaning eventually...

Aloha means "Hello, goodbye, love, compassion, welcome, good wishes." It means belonging to others with a common humanity. It's defined better as a feeling in the heart than by words.

Dx NSCLC adenocarcinoma IIIb Sep 2006, now stage IV. Taxol+Carboplatin+Avastin 4 mo., Avastin 8 mo., Tarceva 16 mo., Alimta 12 mo. (sometimes combined with Cisplatin or Carboplatin), Navelbine since Feb 2010, 10 sessions of WBR in March 2011. See My Cancer Journey: viewtopic.php?p=351369#p351369 — UPDATED 03/05/2011.

Above left: Our golden retriever Rosie, who joined the family on 3/5/08 at the playful age of 2.

Below: Hannah, our golden companion 1994-2007.


PostPosted: Fri Feb 25, 2011 12:25 am 

Joined: Wed Feb 23, 2011 11:32 pm
Posts: 2
Thanks for your replies. As it is, she does not have brain met and they only want to do it as a precaution. We are all really concerned about the permanent side effects. Does any one know of any homeopathy/natural ways to prevent her SCLC from spreading to the brain?

PostPosted: Fri Feb 25, 2011 1:31 am 
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Joined: Sat Jan 17, 2009 1:00 pm
Posts: 1069
Location: Seattle
Nope. Please do read the link on GRACE - it is very helpful.

(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

PostPosted: Fri Feb 25, 2011 10:27 am 
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Joined: Fri Dec 28, 2007 6:32 pm
Posts: 4768
Location: Key West, FL
Can't help with personal experience. I do know a woman in my cancer group who had it as a precautionary treatment and seems very glad she did.

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.

PostPosted: Mon Feb 28, 2011 1:41 pm 
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Joined: Fri Jan 16, 2009 1:43 pm
Posts: 711
Sorry I can't be of more help but I never received PCI, even though I had SCLC. My ONC forgot to even discuss PCI with me until a year after my treatment. At that point I talked with an ONC RAD about the pros and cons and we decided not to do PCI at that time. As with everything "cancer" I have heard good/bad stories about PCI, it totally depends on the person.

Good Luck!

Mar. '08-Routine xray found Spot tip of upper left lung.
Dr orders CAT. growth confirmed.
Sent to Pulmonolgist who orders PET.
Pet results-my spot lights up like a Christmas tree.
Can't reach spot for biopsy referred to surgeon.
Surgical Biopsy scheduled for Apr. 28th '08
Apr. '08-Surgeon found SCLC, removed upper left lobe and surronding lymph nodes.
Everything biopsied no other cancer found, declaired NED by surgeon on Apr.28th '08
ONC wants me to start adjuvant therapy.
June '08-MRI brain scan and CAT NED
Chemo cisplatin/vp16 3 days every 3 weeks 4 sessions ended Aug. '08
Partial hearing loss due to Cisplatin
Sept. '08 1st CAT after treatment NED
Dec. '08-2nd CAT after treatment NED
Apr. '09-MRI (brain) and CAT NED
Aug. '09-CAT NED
Dec. '09-CAT and MRI NED
Apr. '10-CAT and MRI NED
Oct. '10-CAT and MRI NED
Jan. '11-XRay NED
Oct. '11-CAT NED

PostPosted: Sat Mar 05, 2011 3:32 pm 
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Joined: Sun Oct 21, 2007 9:12 pm
Posts: 137
Location: Ohio
Hello and welcome! As has been said already, it's definitely an individual decision and could mean different things for different people. As I'm sure you already know, SCLC can be an aggressive, sneaky bugger and my mom decided to have it done. We wanted to take full advantage of everything in our 'arsenal' so to speak. She did end up having one pesky met that was successfully treated with gamma knife, but we'll never know how many more there may have been without the PCI.

We never saw any side affects attributed to the PCI. From my personal experience, I would recommend it. Mom called it a 'rubber for her brain'! :)

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