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This topic contains 257 replies, has 34 voices, and was last updated by Dr West Dr West 3 years, 8 months ago.

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August 3, 2013 at 1:13 pm  #1258427    
catdander forum moderator
catdander forum moderator

YAY Mikem!!!! I’m so glad to hear of the still all clear scan. Almost 3 years and still holding your breath. I’m sure it will always be that way. Of course at 5 you 2 will feel more safe.
From a partner standpoint it seems D and I do breathe a little easier and have more hopeful moments as time passes (we’re not really looking for a cure but more controllable than most). Though as scan time approaches scanxiety sets in, D’s 3 month scan is Monday with results Wednesday. We started holding our breath 3 weeks ago. Me me me me meee. Sounds like I’m about to bust out in song. :)

I’m thrilled for you. :-D and it makes me hopeful for me. So glad you’re on the forums watching and reading and occasionally commenting. It’s so very helpful for our readers (me me meee) to see the best side of treatments :)

Celebrate, dance, eat, drink, be merry,

August 3, 2013 at 2:47 pm  #1258438    

marisa93

That’s wonderful news mikem! And also great to know you are still following GRACE:)

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

August 5, 2013 at 4:09 am  #1258471    

double trouble

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

August 6, 2013 at 3:46 pm  #1258490    

gn21

Such fantastic news. So pleased for you. Good news in the midst of such sadness is so welcome.

Gail

August 6, 2013 at 8:00 pm  #1258492    

laya d.

YAHOOOOOOOOOOOOOOOOOOOOOOO mikem!!!! So very happy for you (and us)!!!!!!

xoxox,
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.

August 7, 2013 at 7:09 am  #1258500    

mikem

Thanks All! I really appreciate the well wishes. –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 21, 2013 at 11:34 pm  #1258726    

gn21

Latest update:

6 weekly scans again showed stable. Had 10th alimta today.

Had bone scan because of pain in knees and ankles. Showed up as stress fractures and /or arthritis. But not cancer. Gotta be happy with that!

Gail

August 21, 2013 at 11:42 pm  #1258727    

cosmo72

Hi Gail that’s great news so happy you are doing so well :0)

Lesley

August 22, 2013 at 5:10 am  #1258731    
JimC Forum Moderator
JimC Forum Moderator

Hi Gail,

Congratulations on your continued great results! Thanks for sharing your good news with us!

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

August 22, 2013 at 9:06 am  #1258735    

mikem

That is excellent news Gail. I hope all continues well for you. –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 22, 2013 at 12:52 pm  #1258736    
catdander forum moderator
catdander forum moderator

Congratulations Gail! So so happy to hear stable again. May I say a few words on ankle knee pain; “pre travel yoga” ;)

xoxo
Janine

August 22, 2013 at 10:46 pm  #1258744    
Dr West
Dr West

Very happy for you! Thanks and congrats on your positive update!

-Dr. West

August 23, 2013 at 7:50 pm  #1258763    

heartspy

Gail – your good news makes my heart hurt less, thank you. Huge hugs filled with happy to you!!
Janine- thank you for loving my handle. It has a short story behind it: Once upon a time I was a student of cardiopulmonary sciences- you know, spying on hearts, in the cath-lab. The name stayed – I quit. haha. :wink: But, I do still spy on all of you, with all my heart. xo


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 .

August 26, 2013 at 8:32 pm  #1258786    

laya d.

YAYYYYYYYYYYYYYYY GAIL!!!!!!

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.

August 27, 2013 at 2:19 pm  #1258806    
catdander forum moderator
catdander forum moderator

Gail, I did see your new photo and thought about adding swimming to my very non authoritative rehab/PT list. :) I love it!

August 27, 2013 at 9:29 pm  #1258810    
Dr West
Dr West

I also love your new avatar photo, Gail. You set the pace for everyone!

-Dr. West

August 28, 2013 at 7:26 am  #1258828    

marisa93

Gail,

Congratulations on all the wonderful news!!! “Just keep swimming, just keep swimming”(are you familiar w/Finding Nemo?) :-D :-D


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

August 28, 2013 at 9:42 am  #1258831    
catdander forum moderator
catdander forum moderator

Heartspy, add “cardiopulmonary sciences- you know, spying on hearts” for an origin to your name, even better.
much love,

August 28, 2013 at 3:50 pm  #1258855    

Jazz

MikeM – What great news, to remain NED after almost 3 years! May it continue.

Gail – Love the new avatar – refreshing! So very, very glad Alimta is your friend and it’s keeping everything in the barn. Travel on! I’m still hoping I can get a trip in, but will now have to wait and see. By the way, if you don’t already know, the Clovis trial may take a bit longer to get into Phase 2. The hydrobromide tablet, a different version of the agent, has to be rolled out and everyone stabilized. It’s more potent/stays in one’s system longer, so there’s more work to be done there. But the 900mg twice a day dose has been going for sometime so that just might be MTD. The waiting lists are excruciatingly long. I hope you’re high on the list if there is one.

I haven’t had the fortitude to post since my father’s AND Certain Spring’s passing. Tomorrow is one year since Ann/Pedalon’s death. Things weigh on me more these days… Been off tx since May 16. It’s been a nice break, felt terrific past 3 months. In progression now… planning to enroll in the Genentech anti-pdL1 (MPDL3280A) trial at Angeles Clinic (where FeistyD goes for MK3475) since no one can say when I’ll be up on the Clovis list. Will update after 9/10. I think I need to restart chemo tho— my adrenal gland or something back there is pinching me… The Genentech trial has 3 cohorts – 1 for brain mets, 1 for 2d/3rd line, 1 for others? Stanford will open that trial in a few weeks, UCLA in about 3 months.

Love to everyone – y’all are in my thoughts always.

Jazz

May the odds be ever in your favor…


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?

October 19, 2013 at 8:28 pm  #1259964    

gn21

Just a quick update.

Alimta maintenance continues to keep me stable. Last scan early October. Only one more scan for the year left!

Just spent 7 days in Bali. Off to Queensland Gold Coast Tuesday.

Still no side effects from alimta except maybe some weight gain – but that could also be from the champagne! Don’t take the steroids at all now. Just folic acid and the vitamin B shots.

Made it to another birthday!

Gail

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