Hi :)

This topic contains 6 replies, has 7 voices, and was last updated by  double trouble 5 years ago.

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June 22, 2013 at 7:11 pm  #1257450    


Hi again…

I’m here, but this time for myself. Maybe. Yet to be determined and all of that. (Neck/Thyroid) Anyhow I can say now I truly do understand the fear of the unknown and all the other things that you all and our loved ones go and have gone through.

Hoping for positive results.

But mainly I just wanted to say how I admire everyone and their loved ones who faces “this”, so many are so courageous and inspiring.

So, thanks :)

Partner – LD SCLC dx 03/10. 4 cycles Cisplatin & Etoposide. Rad completed 09/10. PET 10/10 – Mets to liver & bones. Topotecan started 11/1/10, 6th Cycle 2/25. CT 2/8 – small shrinkage. Completed IMRT, 20 sessions, 4/5. CT 4/11 confirm vertebrae C2&C3. Rad started 4/13, 10 treatments. CT 5/17, Gemzar commenced 5/25. CT 7/11, further liver progression. Back to Cisplatin & Etoposide, further growth. Back to Gemzar 12/11. Jan 12 seizure, two brain mets. WBR. Left us 3/17/2012.

June 22, 2013 at 9:01 pm  #1257457    
Dr West
Dr West

I hope it turns out to be nothing. Even if it’s thyroid cancer, which is quite common, it’s important to know that it’s a cancer with a remarkably favorable long-term survival in the vast majority of patients.

-Dr. West

June 22, 2013 at 10:07 pm  #1257458    
JimC Forum Moderator
JimC Forum Moderator


Thank you for your good thoughts and wishes. I join Dr. West in hoping that this is nothing, and look forward to hearing good news from you very soon.

Forum Moderator

Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

June 22, 2013 at 11:14 pm  #1257459    

laya d.

Hi Louise! I’m so sorry to read of the “scare”…but am sending positive “nothingness” vibes your way. And, thanks so much for checking in!


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

June 23, 2013 at 8:32 am  #1257468    

certain spring

- what Laya and Dr West said :)

49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

June 23, 2013 at 10:41 am  #1257475    



Good to hear from you but not for the reason you are back! I hope it all turns out to be nothing! Thank you for letting us know so we can all send out “nothingness” vibes like Laya!

Best wishes,

Nov 23, 2010 husband(49/smoker) dx IV NSLC mets to brain/liver, Nov-Dec, 2010 15 WBR tx, Jan’11 MRI much improved, Dec ’10-Mar’11 4 txs carbo/alimta/avastin w/good response, Apr ’11 MRI mets almost gone, Apr ’11 start maintenance alimta, Jul ’11 MRI still good, Jul ’11 carbo/taxol for new lung met and 2 liver mets, Oct ’11 MRI new brain mets and major progression in liver, Nov 2, ’11 GK, Nov 19, 2011 at peace
Since then: http://cancergrace.org/forums/index.php?topic=11426.0

June 24, 2013 at 2:12 am  #1257508    

double trouble

Oh Louise. I’m so sorry you’re having to go through this. I’m sending as much “nothingness” as I can. Please please keep us updated as you learn more about what is going on. Maybe do a signature of your own before or after your partner’s?

I remember when I had a funky lesion grow on the back of my hand. I went running to a dermatologist, who said “With your history, you’re probably a little gun shy” and he was right. It turned out to be nothing but I got so scared. Try not to stress too much until you have something concrete to stress about, okay?

Easier said than done, I know! We’re here for you.

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