Anyone went through PCI experienced any side affect of cognitive function or memory impairment? My dad was recently dx with SCLC and doc recommended PCI as a precaution. But he fears side effects. Can anyone share their experiences?

Thanks!!!

Hi there! Well, I googled PCI because I never heard of it and all I couldn't find a reference to this. Maybe if you gave a bit more detail, we might be able to help!

Have a good day.

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

Same here, what do the letters stand for? It does sound vaguely familiar. You might want to post it at cancergrace.com that has doctors who respond to your questions. Many of us here are dual members and use the same screen names.

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.

PCI is Prophylactic Cranial Irradiation, also often called whole brain radiation. I have not had PCI, but I'm sure someone who can tell you more will be along soon. You might also check at GRACE for more information on it.

Sorry to read of your dad's diagnosis, izzyleung. Best wishes for you both.

_________________
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

Ah! Well I do know WBR, or Whole Brain Radiation! My Mom and one of my best friends both had it. Both had marked improvement in their well being, and symptoms from the brain lesions. They did not have any cognitive issues. The only complaint I heard was that it caused minor fatigue, but they both said it was not a big deal.

I could see almost immediate improvement in both of them. My friend's left side of her face was paralyzed from the tumor, so one side of her mouth and face drooped and her speech was slurred. By the second treatment, her face returned to normal, and her speech was normal.

My Mom was having Grand Mal seizures. They were violent. They subsided after the first treatment.

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

Bill was diagnosed with Limited SCLC and after his first rounds of chemo and radiation he had the PCI. The most significant thing from this treatment was hair loss. I don't remember any cognitive problems. It is the norm for SCLC and recommended for good reason. Even though he lived only another 16 months after PCI I'm not sure he ever had mets to the brain.

_________________
~~Laurie~~

Bill, I love you so, I always will
(The 5th Dimension - Wedding Bell Blues - 1969)

05/13/47 -- 04/03/08
Small Cell Lung Cancer

Trust in the LORD with all your heart and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.
Proverbs 3, 5-6

__________________________________

thank you guys!!! My dad's CT scan does not show brain met, but PCI is recommended as a preventive measure which supposedly does increase survival. The doc did say the benefits outweigh the cost. So we will do it and I will pray hard for him to not have any significant side effects. I have a 5 months old baby and my dad loves to teach my baby stuff, he's the greatest grandfather. So i think it would pain him if he can no longer educate my child. Hopefully he will do well with treatment. I will keep you all posted.

Sorry to hear about your loss, Laurie. SCLC is a real devil, I pray for all the fighters out there!

izzy

Good luck with your dad's PCI. I have learned so much by visiting this site. How long was your dad diagnosed before he went for the PCI. Do you know how they will give him this test? I am also just curious about his diagnosis. How when did he get diagnosed? My mom just got diagnosed two weeks ago and just began her first cycle of chemo.

izzy, my first-born grandson lived near me til he was six. He and I (and his grandfather) have a close bond. I can't tell you how much he has factored into my resolve to face this disease head-on.

Petunia, glad you found izzy. Sounds like you two can do some early dx info sharing.

Judy in KW

*update* the radiation doctor did an MRI of my dad's brain, very dishearteningly it shows 2 spots of 2cm and 1.8cm in his brain that was not seen in the CT scan in october. I was so sad, he (we) never got a break. every time he seems to get better, our hopes went up. but ever since he was dx with small cell (the worst type of LC in my opinion), the news was never good! i just can't believe we are having such streak of baaaad luck!

now we don't have a choice but do whole brain radiation, hope that kills all those darn tumors!!! i am so angry that cancer is such a helpless disease! it;s like you have to count your blessings very day and pray it doesnt return and there is nothing you can do about it to make sure it doesn't return!

there is nothing i can do. i don't know how much more i can take. but i have to continue to hope that the WBR will kill the cells and give him more time. precious time...it pains too much to see him wither away day by day...i wish i can give him some of my life...

is anyone here with brain mets can share some of their experiences?? any survivor after that? what can we do differently to increase his odd of survival?

Thanks for listening and sharing.
Izzy

I am so sorry to hear about your news. I will pray that wbr will help him (and you). I am sorry I don't know much about it because I am learning also. It is weird how this disease turns your life into letters: sclc, wbc, pci, mri, wbr.. and we just want to say f.u. Spend this time with your dad and your baby and treasure every moment. I know it is hard to be positive at a time like this, but positive thoughts will do so much. I just talked to a friend of mine whose friend was diagnosed with ex scls and was told 3 months and she went through radiation (she had mets to her brain), chemo, and other tests, and was going on vacation the following year. It is hard to see your loved one be in pain. I wish we could take away even a sliver of their pain. Hang in there, think of positive times and positive outcomes and stay strong for your dad, you, and your baby. I will be waiting to hear how everything is going.

Izzy,
I don't have SCLC so I can only offer you what I know from my NSCLC perspective. I was diagnosed over 5 years ago with mets to the pons area of my brain. They were treated with stereotactic radiation. Then last April several new mets showed up on my brain. I had Gamma Knife surgery on them. Here I am , more than 5 years from diagnosis, and I spent the day, shopping, chatting with my kids, and decorating for Easter. In other words, living. I wish the same for your Dad. Always have hope. And remember, no matter how hard, to try to find joy in each day!
Praying for you and your dad
Janet

_________________
Diagnosed at 47 years old - never smoked
3 amazing children, now 27, 25, and 24
Married 30 years

12/22/06 Diagnosed NSCLC Stage IV - Adnocarcinoma
Tumor in Rt Lung, 3 on Spine, one on the Pons of the brain
Radiation to the spine
Fractionated Linac Stereotactic Radiotherapy to the Pons of the brain

2/15/07 Start Tarceva 150 mg
4 1/2 years of "no progression of disease"

4/11/11 New mets on brain, Gamma Knife Radiation
Probable Leptomeningeal Disease.
Start "pulsing Tarceva" 1500mg 1xweek

7/11 - Brain mets swelling as an after effect of Gamma Knife, put on anti seizure meds, steroids.
New mets on spine and lung - watching.

9/11 - No new growth in Brain - more growth on spine and ribs. Back to Tarceva 100mg daily, adding Avastin every 3 weeks.

12/11 - Scans show no new growth, some mets stable, others have shrunk!

12/22/11 - 5 year survivor!!!!!

7/20/12 - scans show new growth in lungs and spine. Staying on Tarceva and Avastin and adding Alimta and Carboplatin.

10/12 Taken off Alimta and Carboplatin due to extreme side effects, continuing on Tarceva and Avastin - scans stable

Winter/13. Scans show growth again. Bones, lungs, lymph nodes, spleen. Time to look into clinical trials

4/13. Started clinical trial at Yale AP26113 by ARIAD, a "second generation Tarceva", side effects so far, diarrhea and nausea.

My story - http://lungevity.org/l_community/viewtopic.php?f=47&t=46162

Thank you, Janet. Your story is encouraging! Hope to see you on this forum for MANY MANY MORE YEARS TO COME!