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 Post subject: searching for help
PostPosted: Wed Aug 10, 2011 6:05 pm 

Joined: Wed Aug 10, 2011 5:42 pm
Posts: 1
I'm new to this site. My dad was diagnosed with Stage IV NSCLC last march and has been on Tarceva since then. He was responding very well but his last 2 scans are showing some growth so we're fearful he is building a resistance. We're researching supplements and other targeted therapies. He has the EGFR mutation with an exon 19 deletion. Anyone with a similar story with any advice for next steps would be greatly appreciated.
Is anyone taking IP-6 and Curcumin? or any other supplements that have worked for you or your loved one?

 Post subject: Re: searching for help
PostPosted: Thu Aug 11, 2011 10:34 am 
Legacy Member

Joined: Fri Dec 28, 2007 6:32 pm
Posts: 4768
Location: Key West, FL
Welcome to the site. Glad you found us but sorry you needed to. Can't address your Dad's situation from experience except that I'm 3b and still doing well after more than 3 1/2 yrs. He may be done with Tarceva if he progressed on it but there are plenty of chemo options available. Let us know what his onc recommends. Someone here has bound to have been on it.

If you have questions about supplements, I would recommend cancergrace.org. Many of us here are members there as well. They have doctors that answer your questions from a general perspective with no charge. The last I checked they also had a doctor with a nutritional speciality.

Good luck and keep us posted.

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.

 Post subject: Re: searching for help
PostPosted: Tue Aug 16, 2011 7:35 pm 
Director of Support & Advocacy, LUNGevity
User avatar

Joined: Thu Jan 09, 2003 11:09 am
Posts: 15199
Location: Texas
Hi Dina,
sorry to hear about your dad's progression. THere have been some cases where a patient has taken a tarceva "break" (went onto another chemotherapy) and then later went back to tarceva to have it work effectively again.

I also know of folks who have had avastin and tarceva and there is also the clinical trial of crizotinib but I am NOT a doctor and am not giving medical advice.

Just know that we are here for you. Please keep us updated on you and your dad.

We have an ask the experts area where lung cancer experts will answer questions for you about next line treatment and proven supplements. You may want to ask those questions there as well. http://blog.lungevity.org/ask-the-experts/

Hang in there and keep posting. I look forward to getting to know you

 Post subject: Re: searching for help
PostPosted: Tue Aug 16, 2011 8:55 pm 
Legacy Member
User avatar

Joined: Sat Jan 17, 2009 1:00 pm
Posts: 1069
Location: Seattle
Here's a link to the discussion (a bit old) on Grace on IP-6:

There are some studies on Curcumin, but more in the prevention arena than as a treatment.

I did not try anything to maintain the usefulness of Tarceva. Frankly, after 15 months, I was pretty tired of the side effects. Will I return to it in the future if that becomes an option? Probably - and will hope for the best as far as the side effects.

Here is also a link to second line treatment for advanced lung cancer on Grace - perhaps it will help:
http://cancergrace.org/lung/2010/10/04/ ... lc-option/

I'm not a medically qualified individual either - but reasonably well informed.

(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

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