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April 22, 2013 at 6:58 pm  #1255863    

laya d.

Hi Everyone:

I’ve been away for a bit – – so, I’m just getting to this thread . . .

cs: so sorry about all you’ve been through recently. I’m glad that Debra was bold enough to ask you how you are doing because although I’ve been thinking about you every single day, I couldn’t quite muster up the courage to ask. So, thanks for the update, and thank you lovely Debra for asking. As to that bloody awful tech, “screwdriver” and “fudge” her. And, karma’s a witch with a “B.”

Gail:YAHOOOOOOOOOOOOOOOOOOO. . .and what a neat adventure you’ve been on with your holidays/traveling. I just spent a week hiking, inner-tubing, zodiacing, small cliff-jumping, ziplining, kyaking, snorkeling, swimming, sand-castling and frolicking about with humpback whales, spinner dolphins, monk seals, green sea turtles, cardinals, red-footed boobies, centipedes and 3 very unruly and uncooperative children. In short, I got to air out some before getting back to the grind. And, although I have no bucket list to speak of, I’ve learned through my Mom’s illness and death that I (we) very much have to live in the present, to partake in things that bring us joy (no matter how small), and to enjoy each day as it comes. I’m very much am trying to consciously do this.

Debra: I love you.

Dr. West: Hope you’ve aired out some as well. . .

xoxo,
Laya


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.

April 22, 2013 at 7:34 pm  #1255864    
JimC Forum Moderator
JimC Forum Moderator

Hi Gail,

There’s no real answer to your question. While you can look at various trials of first line therapy to see patients’ median progression free and overall survival, each of those patients was newly diagnosed and just beginning treatment, each at the same starting point. There wouldn’t really be any statistics that would be relevant for a patient after five lines of therapy; you’d need a trial of similar patients and that just isn’t done. When you get to this point, there just aren’t any statistics to guide you…each patient is unique. But the fact that you responded so well to carbo/alimta is a good sign that you will do well on alimta maintenance.

But stable or a bit of shrinkage is a wonderful result, and it’s great that you’ve had minimal side effects and feel well enough to embark on such extensive travels.

Enjoy your trip!

JimC
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

April 23, 2013 at 1:56 am  #1255866    

certain spring

Gail, how totally wonderful! Everyone goes on about Prague but Budapest is lovely too. You don’t think London might be an appropriate stop? We’ve got a nice cathedral :)
I am confined to barracks as my lung has collapsed – yet again, and predictably. My wheeze is silent – meaning that my husband and I are sleeping better but that it’s hard for me to climb the stairs of our new house. At this moment I never want to see another doctor, have another scan, or enter another hospital. I don’t want anyone to come at my veins with a needle or to be asked my date of birth. In my dreams I shall swim with the spinning dolphins and promenade in front of the Hrad.


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.

April 23, 2013 at 6:55 am  #1255874    
Dr West
Dr West

Having thought about what I’d say about the duration of response on maintenance Alimta (pemetrexed) before reading Jim’s response, I was thinking very much the same thing. First, congratulations are in order, since even minor shrinkage after so much prior therapy is remarkable. It also attests to how poorly averages and medians are likely to apply to you. You must already be very well aware of how exceptional your individual course has been, which means that the only thing we can be confident about, moving forward, is that we can’t presume from the averages what will happen for you.

Looking at a bunch of maintenance Alimta trials together, it’s around 3-4 months on average as a “maintenance” therapy after first line therapy has been completed, but there’s such a wide range around that average that I consider it a nearly meaningless number. I’ve had patients progress after 2 cycles of maintenance, and I’ve had patients go out beyond a year or even 18 months with it as a maintenance therapy. And it really is a different situation as a later line of therapy, so I think astrology would be about as helpful in estimating what to expect (i.e., of no value).

Congrats again, and good luck with your upcoming adventures!

-Dr. West

April 23, 2013 at 8:29 pm  #1255897    

gn21

Thanks all for your responses. I guess I know intellectually that statistics are static, people arent. But emotionally I am looking for a hook to hang on to!

So I will attempt to put my need for data to the back of my mind, and just keep on living like I’m not dying.

Gail

April 24, 2013 at 9:24 am  #1255899    

heartspy

Hi Gail,
I am amazed by your strength and stamina. Love the “keep on living like I’m not dying” sentiment. Truly, you make me smile. Thank you. I wish many continued travels filled with life affirming adventures. Peace- Megan


My Beloved,43 year old husband passed away on 4/17/13 from NSCLC w/ EGFR+ mutation. My heart hurts with grief, but remains full of gratitude to GRACE .

May 3, 2013 at 1:50 pm  #1256192    

Jazz

Gail,

Not sure if you’ve taken off for your next adventure but WOW, YOU GO GIRL!! I’ll just travel vicariously through you ;) That’s terrific! Make sure you shake your fist at all the gods worshipped in all the places you visit, ha ha.

As for Alimta – I keep hearing that it works much better for ALK mutants than EGFR mutants, but your response seems phenomenal, so that’s a great sign. Enjoy the ride, I guess? I was on Alimta + Tarceva for 2 years… and halfway through I was NED. I wish I’d not done them simultaneously, but I got another long run with Tarceva after being off both for 6 months. So perhaps you can run Alimta out and return to a TKI again. Either way, very best of luck on your adventures!

Jazz


Non-smoker, Dx 6/06 Stage IV Adeno. EGFR+ (exon 19 del), T790m+. Trial: 2cyc Carbo/Doce/Avastin + 2 w/Gem 8 – 12/06; Avastin maint. 1 – 4/07. Alimta + Tarceva 5/07 – 2/09. NED to 8/09. Tarceva 150 9/09-5/11, SBRT/XRS to lung & spine met 2/11. Trial MK2206 (AKT inhibitor) + Tarceva 5 – 12/11. Afatinib+cetuximab trial 2/12 -2/13. LL collapsed. 1/13 PET – new bone & adrenal mets. 4 cyc Carbo-Gem-Tarceva 5/13. Brain MRI 10/13 – clear. Lost Dad to LC 5/13.Anti-PDL1@Angeles Clinic?

July 11, 2013 at 12:17 am  #1257825    

gn21

Quick update. Have just done my 8th round of alimta as 5th line treatment. First scan stable, second small shrinkage, today’s small shrinkage.

Alimta is my friend. I know it’s not nice to everyone, and I feel for them having suffered with some of my other treatments, but for me this is easy street.

Scan did mention fatty liver. I’ll drink to that!

We take what we can get! Planning another river cruise in France next year. Told Ben he needs to keep me alive til then because I can’t get my money back!

And I have lots of other holidays booked before then as well.

Gail

July 11, 2013 at 4:29 am  #1257827    

njliu

Gail, you are amazing. Perhaps the secret is in your strategy. Wave your fist and fill up your schedule with fierce activities, leaving no room for the cancer cells to raise ugly heads. Wishing you great fun. Happy for you.
NJ


Wife, 56, Asian, 11/11 Dx Adenocarcinoma 3B, EGFR+. 12/11 Iressa, great response. 12/12 asymptomatic brain mets with possible lepto, 1/13 WBR, continue Iressa, 9/13 Local Progression at primary tumor, 10/13 focal radiation, 1/14 PET Scan:Tumor Resolution, continue Iressa, 6/14 PET shows flare up at same primary. 9/14 CT stable/MRI reappearance of brain mets, 4/15 stable brain mets, 5/15 increase in SUV and slight pleural effusion. 6/15 Afatinib + Cetuximab

July 11, 2013 at 6:17 am  #1257830    

double trouble

I shall travel the world vicariously through you! How wonderful! And SHRINKAGE? We LOVE shrinkage!

:-D :-D :-D HAPPY DANCE! :-D :-D :-D

Debra

July 11, 2013 at 6:33 am  #1257833    
catdander forum moderator
catdander forum moderator

Cheers Gail! I’ll raise an appropriately filled glass to you this evening, for now coffee will have to do.
Very glad you’re feeling good and travelling the world!
Janine

July 11, 2013 at 7:57 am  #1257836    

heartspy

Go, Gail, Go!!! Many Continued Blessings to you and your family!


My Beloved,43 year old husband passed away on 4/17/13 from NSCLC w/ EGFR+ mutation. My heart hurts with grief, but remains full of gratitude to GRACE .

July 11, 2013 at 9:34 am  #1257840    
catdander forum moderator
catdander forum moderator

Hello heartspy, I’ve always loved your username, it puts such an insightful and loving turn on the word spy. I hope you are moving a little more easily through your days.
I think of you and your too young husband often.

Much love and peace,
Janine

And
Thanks for keeping an eye on our hearts.

July 11, 2013 at 2:00 pm  #1257844    

laya d.

YAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!


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.

July 11, 2013 at 5:13 pm  #1257851    
Dr West
Dr West

That’s amazing news. You’re an inspiration both in terms of treatment and travel plans/zest for life.

Congratulations!

-Dr. West

July 11, 2013 at 7:25 pm  #1257852    

marisa93

That’s wonderful news Gail!!!!! Enjoy all your travels!!!

Lisa


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

July 11, 2013 at 11:21 pm  #1257857    

cosmo72

Hi Gail good to see you are travelling well in more ways than one :0)
best regards Lesley

August 3, 2013 at 7:27 am  #1258420    

mikem

Hi all,

I haven’t posted anything lately but I am still reading and following everyday. I thought it was time I gave an update since it has been some time. Last April I had a scan 6 months after the previous one and something was seen on the CT that was believed to be infection. They gave me a z-pak but to be on the safe side my oncologist decided to move my next scan back up to 3 months. He wasn’t able to show me the picture at the time because of computer problems.

So even though it was believed to be infection of course all of us worry and so we waited, which we all know is one of the worst thing about going through this. Well, in some cases good things come to those who wait… and in my case this is true. I had my scan at the end of July and the infection had completely cleared. He was able to show the pictures to me side by side and there was no missing the rather large spot in my lung. My partner saw it from across the room and noted that he could see why they were worried. Anyway all is clear and 2 years and 9 months after surgery I’m still NED. Next scan in 6 months. I hope everyone is doing well. I am still on this board daily. –mikem


56 year old former smoker diagnosed w/Stage IV NSCLC Adenocarcinoma 10/20/09 Completed 6 carbo/alimta followed by 10 Alimta maintenance. Biopsy of iliac negative for metastatic disease. Might not have been a stage IV after all. Oct. 2010, on to surgery…. removed lung. All lymph nodes clear 11-17-10. July 2014 Still all clear. One more 6 month check and if all is good annual only.

August 3, 2013 at 11:00 am  #1258423    
Dr West
Dr West

Wow, it’s great that you’re so far out and without evidence of disease! That’s a great sign. Thanks so much for sharing your update, and I hope that you have more occasions to share good news for a very long time to come!

-Dr. West

August 3, 2013 at 12:51 pm  #1258425    
JimC Forum Moderator
JimC Forum Moderator

That’s excellent news, mikem! Glad to hear you’re doing so well. As Dr. West said, we appreciate hearing these good-news survival stories, so thanks for updating us. And thanks for checking in daily on your GRACE family!

JimC
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

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