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July 12, 2012 at 9:13 am  #1244987    
catdander forum moderator
catdander forum moderator

Hi Slimer, I read your bio to refresh myself. BTW, please copy it and paste it in your “signature”. You can find the signature option in your “forum profile”. Just click your user name on the left of any of your posts (where a pic would go) that takes you to your forum profile and sig option. The signature is the one that shows on the bottom of your posts.

Congratulations on such a great response to Gemzer. We’re really lucky, you and D to be on the right side of the curve. D is still NED. He did have a scan that showed stable and one that showed possible progression early on (enough so that the onc speculated about a change). These are some of the reasons the onc is questioning whether it’s even cancer or not (it’s not the primary and the biopsy on the new lesion only provided a 3 day stay in the hospital with a collapsed lung, non diagnostic). I’m pretty sure his first and second thought is that it is cancer and spent some time yesterday describing ways in which it could return and what to watch for.

The take home is that anything is possible…and at least for now we’re very lucky.

BTW, I think you do have options that aren’t more toxic than gemzar. If I read your bio right you have adeno with squam features. That makes you very possibly a candidate for alimta and for sure tarceva. If you are in an area near enough to a trial there are many and some at least are very promising.

http://cancergrace.org/lung/2012/06/16/immunorx-in-lc-pt-2-brahmer/

http://cancergrace.org/lung/2012/06/13/immunotherapy-for-lung-cancer-part-1-podcast-by-dr-govindan-on-mage-a3-stimuvax-and-lucanix/

You’re in a good place, congrats
Janine

July 12, 2012 at 10:31 am  #1244990    

marisa93

Janine, wonderful news for D and you…now, go enjoy!

Debra, so sorry you are on such a roller-coaster. Sending ((((hugs)))) to you. I was only too happy to give one to Jim for you. We are thinking of you:)

Laya, we are both happy to be back here(have always lurked a bit). I find it a little tough sometimes but it’s so nice to communicate with everyone again:)

Onlychild, I also want to apologize for forgetting you. Thinking of you and your mom:)

Slimer, congrats to you on such good response.

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 12, 2012 at 11:15 am  #1244995    

slimer

Catdancer,

Thank you for your generous response and the links. With all my concentration on the “Stable” CT result in my lungs, I forgot to mention that the tumor on my left rectus muscle inquinal area that measured 3 cm on my Dx PT/CT back in Aug. 2011 was not seen on the July 2 scan, so now no met outside lung, and that definitely is a positive.

Big cyber hugs to you and D. I have put October on my calendar/diary and await more good news from you guys.

Slimer

July 12, 2012 at 5:46 pm  #1245025    
Dr West
Dr West

It’s great to hear from everyone, and I apologize for being less frequently around the forums (though not absent). I’m trying to let other docs field some questions without me butting in as much, as I don’t want to inhibit others by jumping into every conversation.

Just about all of these results sound very encouraging for people. I’d say that I share the perspective, and I think most experienced oncologists do, that stable is GOOD. Non-progression is perfectly welcome. You almost always see the benefit of a treatment “front-loaded”, so that the shrinkage tends to become less pronounced over time, and it’s quite unusual to see further shrinkage in lung cancer after the first 1-2 scans. So if we see initial shrinkage and then stability, we’re usually very happy with that, because the most important thing at that time is prolonged duration of non-progression.

Debra, I wish I had a good answer to offer, but I’m glad you have so many people thinking carefully about the best approach for you. I’ll just join to chorus of fans here who are wishing the best for you.

-Dr. West

July 13, 2012 at 5:20 pm  #1245085    

Jazz

Hurray for long treatment breaks! Janine, may NED follow D. all the year through (it’s like Xmas in July!).

So good to see you here again, Jim and Lisa ;)

Slimer, best wishes for continued success with Gemzar. It’s good to defy time limits given on one’s life…

Onlychild, hope your Mom continues to do well.

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 14, 2012 at 9:58 am  #1245107    

fortmyr

Janine, this is great news. NED is always a welcome guest :wink:

Jim and Lisa, it’s great to see you back (and I love the picture).

Debra, I’m thinking of you and keeping my fingers crossed.

Laya, how is your mom doing?

I’m glad I found this thread…Take care everyone,

Myriam


Sister (46 yo), non-smoker, diagnosed stage 4 NSCLC 12/2009 12/09-03/10: 5 cycles cisplatin+navelbine (stopped because of neuropathy) 04/10-06/11:Tarceva (EGFR, exon 21 mutation) 02/11: 15Xrad. to right lung (bronchi blocked) 04/11: MRI shows 10 brain mets. 05/11: 5 sessions of WBRT (20 Gy) 06/11-12/11: maintenance Alimta 11/11 and 01/12: radiosurgery (15 Gy to 2+3 brain mets) 12/11-03/12: re-Tarceva. 04/12: Afatinib (convulsions) 08/12: adding Cetuximab to Afatinib. Left us October 31, 2012.

July 14, 2012 at 10:09 am  #1245108    

marisa93

Jazz, thank you, it’s good to be here again :)

Myriam, it is great to be back and glad you like the picture:) Happy that you found this thread also!

Keeping everyone in my thoughts,
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 16, 2012 at 3:16 pm  #1245239    

laya d.

Hi All:

So happy to read that D is geting a well deserved treatment break. . .and continued luck to the rest of you.

Myriam: My Mom is getting a CT scan as we speak. . .but we don’t get the results until our appt. with her dr. on Wed. afternoon. I will come by and update you guys after that. . .generally speaking, she is extremely fatigued – – although her dizziness, nausea and balance problms have pretty much resolved.

Much love to you all.. .

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.

July 16, 2012 at 3:26 pm  #1245240    

fortmyr

Laya, I’ll be thinking about your mom, praying for the best.

Myriam xxx


Sister (46 yo), non-smoker, diagnosed stage 4 NSCLC 12/2009 12/09-03/10: 5 cycles cisplatin+navelbine (stopped because of neuropathy) 04/10-06/11:Tarceva (EGFR, exon 21 mutation) 02/11: 15Xrad. to right lung (bronchi blocked) 04/11: MRI shows 10 brain mets. 05/11: 5 sessions of WBRT (20 Gy) 06/11-12/11: maintenance Alimta 11/11 and 01/12: radiosurgery (15 Gy to 2+3 brain mets) 12/11-03/12: re-Tarceva. 04/12: Afatinib (convulsions) 08/12: adding Cetuximab to Afatinib. Left us October 31, 2012.

July 16, 2012 at 4:16 pm  #1245241    
JimC Forum Moderator
JimC Forum Moderator

Laya,

Sending my positive vibes for a great scan result, and I will be thinking of you and your Mom until you check in again.

Jim


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

July 16, 2012 at 4:39 pm  #1245242    
catdander forum moderator
catdander forum moderator

Laya, I’ll be holding you in my thoughts.
Janine

July 16, 2012 at 6:58 pm  #1245249    
Dr West
Dr West

Laya,

I’m glad some things that were making her miserable have improved, even if her fatigue remains an issue.

Good luck with her upcoming scan. We’re thinking of you.

-Dr. West

July 17, 2012 at 9:34 am  #1245284    

double trouble

I will be holding my breath for the results of the CT. It’s good to hear the balance issues have resolved. You both continue to hold a special place in my heart.
Debra

July 17, 2012 at 9:37 am  #1245286    

double trouble

Janine, I’m hoping that D’s new area of concern turns out to be nothing. BTW, I think you’re doing an amazing job as a forum moderator. You’re awesome!
Debra

July 17, 2012 at 8:30 pm  #1245348    
catdander forum moderator
catdander forum moderator

Debra, you made me second guess my reality for a moment there. But D is in a good place. Scan results say NED. So couldn’t be better and we’re hoping for a long break. Unless you’re talking about my head and it is always full of areas of concern. Hell, it’s an area of concern in itself.
Thanks so for the vote of confidence in the moderating area. I have to admit I feel a little lost because so many of our wonderful regulars aren’t responding like they used to. Y’all need to come back. Jim and I won’t bite if you provide insight and knowledge, promise.
Janine

July 23, 2012 at 5:37 am  #1245704    

follansbee

Update on my husband’s latest CT scan: no progression, modest amount of shrinkage! Bloodwork , etc. remain good. Will continue Avastin/Alimta maintenance, next scan in three months.

follansbee :-D

July 23, 2012 at 6:19 am  #1245705    
JimC Forum Moderator
JimC Forum Moderator

Great results, follansbee! Congratulations!

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

July 23, 2012 at 12:38 pm  #1245709    
catdander forum moderator
catdander forum moderator

Yay Follansbee!!! yay modest shrinkage!!!
So happy to hear good news. Take a breath and enjoy the rest of your summer. (are you in the hemisphere with summer at the moment?)

I’ll think of you when I do my dance today. yeehaa!

July 23, 2012 at 3:28 pm  #1245723    
Dr West
Dr West

That’s really wonderful, Follansbee. Congralations, and thanks for sharing that good news.

-Dr. West

July 23, 2012 at 5:05 pm  #1245737    

follansbee

Thanks, to all of you. We are really so happy. Another three months of being relaxed and feeling grateful. Yes, catdander, we’re in summer here and enjoying the HOT North Carolina weather.

follansbee

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