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July 23, 2012 at 6:35 pm  #1245745    

laya d.

WHOOOOOO HOOOOOOOO, FOLLANSBEE!

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 12, 2012 at 11:40 am  #1246664    

certain spring

I feel that we haven’t heard from Jing (faithandhope79) for what seems like a long time. Of course I would wish to respect her privacy but if anyone is in touch with her, I am sure lots of people here would like to hear how she is doing. Or if there is news of her that I have missed, could someone point it out? Best to all.


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.

August 12, 2012 at 12:31 pm  #1246665    
JimC Forum Moderator
JimC Forum Moderator

Hi certain spring,

The last post I see from her was in late June: http://cancergrace.org/lung/topic/lets-share-the-experience-of-bibw-2992-cetuximab/page/7/#post-12160

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 12, 2012 at 2:35 pm  #1246671    
Dr West
Dr West

I’ve felt the same way and have become concerned with her absence.

-Dr. West

August 13, 2012 at 12:42 am  #1246683    
catdander forum moderator
catdander forum moderator

I reached out to jing via email. I hope we hear from her soon.

August 13, 2012 at 1:12 am  #1246684    

certain spring

Thank you, Jim and Janine.


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.

August 15, 2012 at 3:05 am  #1246803    

blue skies

I am in close touch with Jing. We have both been focusing on our personal circumstances of late. I am sure that she would not want anyone to be unnecessarily worried about her (though her absence is always concerning) and will be happy for me to provide some reassurance about her condition while she is feeling too tired to log on to GRACE.

Jing dropped out of the BIBW/cetuximab trial on July 13…after about 9 months of stable results. I think that makes her one of the super-responders, once again!

Jing has been struggling with debilitating pain from mets to her spine. She’s been in pain since early this year, but it had gotten untenable in recent months and she finally decided to speak up about it. Like me, a diagnostic MRI of her spine identified a 1 cm met on her brain. Her doctor was more concerned with the spine met and the pain and suggested that the brain met may be quite indolent and may have been there a long time. They irradiated her spine a week or so ago and will irradiate the brain met later this month. Then she will start a course of Tarceva/Alimta.

You may recall that Jing just passed her 5 year lung cancer milestone. She asked her doctor about prognosis on Tarceva/Alimta and he said it should work for at least a few months, but that he has a patient who was on the combo for 7 years. “So that is some hope,” Jing says..

The pain medication is helping, but she has had to take medical leave and stay at home because of residual pain and the fatigue and side effects of the medication. Her doctor has told her that the pain will continue to resolve, that she’ll feel better in two weeks and continue to improve over the next several months.

I may have to fight you all to declare myself Jing’s biggest fan! We met at MSKCC when we were both enrolled in the BIBW clinical trial and she is just as wonderful in person as she is on line!

August 15, 2012 at 5:33 am  #1246808    

certain spring

So pleased to have news of Jing, Blue Skies – thank you for filling us in. What a lot you have both been through. I am really sorry to hear about her pain, and hope the radiation will help. Wonderful that you had the chance to meet in New York.


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.

August 15, 2012 at 12:39 pm  #1246831    
catdander forum moderator
catdander forum moderator

Oh Blue Skies, Thank you so much for the update on Jing. She is a superstar! as are YOU!

August 15, 2012 at 5:27 pm  #1246837    

ssflxl

Blue Skies,

thanks for your post about Kaiser clinical trials. I know about the trial coordinator and I live in Northern CA, and I don’t think they will cover clinical trials in the East Coast – only UCSF, Stanford and UC Davis, so I am more restricted. I know they don’t generally cover Phase 1 trials – especially when it’s a brand new drug. I am just gathering information at this stage, so that when the time comes, I will already have the info needed about the trials that I want to participate
I am so glad that you are in touch with Jing. we miss her posts and you can let her know that we are pulling for her. I wonder if she has tried Tarceva with Avastin? It does take a while for radiation to help. In my case, it was a nerve compression and it took about 5 weeks after cyberknife before I finally felt good relief.

thanks

ssflxl


Non smoker Asian F, St 4 NSCLC – 11/2010, 6 cm LUL mass, met to paraspinal muscle, +EGFR at Exon 21 L858R. Tarceva in 11/2010, rad to lung mass and met. 5/2012 – PET showed inc SUV in primary cancer, new 1.6 cm lesion in left thoracic inlet causing Horner’s syndrome. Cyberknife to lesion – 5/2012. Restarted Tarceva 75mg/day -5/12, reduced to 50mg. 8/12 – PET- thoracic inlet lesion gone. 11/12 PET – inc SUV in primary tumor, ant mammary node, some SUV uptake in a fibrotic area in apex. Biopsy of this showed fibrosis and scant atypical cell. Cyberknife to mammary node, continue Tarceva. PET-10/13 – incr SUV to 14 in left primary tumor and new 1cm nodule in LUL, no new symptom. 12/13 – biopsy of LUL- same Exon 21, L858R – ?no T790M. on Tarceva 75/50. 1/14 PET – not much change. 2/14 – arm pain, cough, sob. CT – inc tumor to 5.5×5.9 with LUL collapse. 2/14 – Carbo/Pem x6. 4/14 PET – dec SUV but new bony lesions. PET in 6/14 – stable. start Pem every 3 wks in 7/14, Pamidronate every 6 wk.

August 15, 2012 at 9:43 pm  #1246843    

blue skies

ssflxl,

I don’t know why Kaiser would care about the geographical location of the clinical trial as long as they felt you were up to being able to handle both the treatment and the travel. And as Jazz and others can tell you, travelling back and forth for even a one-day or overnight visit can be draining. Often, in the beginning, you must travel each week, later spreading the viosits out to twice a month or maybe more. And then, all the testing and monitoring has to be done at that institution, so you have to add in days for CT scans and such. But, if you are otherwise healthy, it can work and it becomes part of your routine lifestyle. I grew to enjoy my quiet rides between DC and NYC, Kindle in hand. And now I miss it!

August 15, 2012 at 11:38 pm  #1246845    

ssflxl

Blue Skies

Even if Kaiser doesn’t care where I go for my clinical trials, it would be difficult for me to go somewhere too far. If I have to fly over to the East coast frequently, and stay a couple days at a time, it would definitely be a barrier to get to the clinical trial. I could do it if it’s a short flight or ride, but 5 hours of flight either way is a bit much, especially when you don’t just go once a month, but more frequent than that. I admire those of you who can tough it out. Maybe the furthest I would go is to Univ of Colorado. That’s why video or virtual visits for clinical trial would be so valuable – that would be a game changer.

thanks

ssflxl


Non smoker Asian F, St 4 NSCLC – 11/2010, 6 cm LUL mass, met to paraspinal muscle, +EGFR at Exon 21 L858R. Tarceva in 11/2010, rad to lung mass and met. 5/2012 – PET showed inc SUV in primary cancer, new 1.6 cm lesion in left thoracic inlet causing Horner’s syndrome. Cyberknife to lesion – 5/2012. Restarted Tarceva 75mg/day -5/12, reduced to 50mg. 8/12 – PET- thoracic inlet lesion gone. 11/12 PET – inc SUV in primary tumor, ant mammary node, some SUV uptake in a fibrotic area in apex. Biopsy of this showed fibrosis and scant atypical cell. Cyberknife to mammary node, continue Tarceva. PET-10/13 – incr SUV to 14 in left primary tumor and new 1cm nodule in LUL, no new symptom. 12/13 – biopsy of LUL- same Exon 21, L858R – ?no T790M. on Tarceva 75/50. 1/14 PET – not much change. 2/14 – arm pain, cough, sob. CT – inc tumor to 5.5×5.9 with LUL collapse. 2/14 – Carbo/Pem x6. 4/14 PET – dec SUV but new bony lesions. PET in 6/14 – stable. start Pem every 3 wks in 7/14, Pamidronate every 6 wk.

August 16, 2012 at 1:33 am  #1246847    

certain spring

Hope I’m not interrupting this discussion. I just wanted to respond to Blue Skies’ original update on Debra’s thread:

http://cancergrace.org/topic/new-new-plan/page/2/

Blue Skies, I am so glad to see you back – I have been fretting about you and thought there might be something amiss. How tough for you to hear about the brain mets, minuscule though they sound. Your attitude is magnificent and puts me to shame. However it did make me laugh to hear of the cupboard-clearing activity. (I’m trying to think of an animal that is the opposite of a squirrel, ie throws everything out?) Glad you have trial options, are feeling well and have a good team looking after you.


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.

August 16, 2012 at 3:17 am  #1246848    

blue skies

One last response here (being sensitive to having hijacked Debra’s thread)..

Yes, Certain Spring, I’ve been thinking of you this past week as I’ve been up all night, whirling around the basement sorting, and pitching and cleaning and fighting the entropy that has dominated the last 10 years as my children grew and we became increasingly involved in managing my husband’s mother’s household and affairs. It’s a two week course of drugs, so the project will come to a screeching halt in another week or so as I finally taper off.

I am always surprised when you comment that something “puts you to shame.” You are so incredibly resilient and scrappy and brave…much braver than I am. When I reread your profile, which I do from time to time, I am always struck by the intensity of your experience and emboldened to believe that I can be as strong and resilient and amazing as you continue to be.

I hope that Wonderful Webmaster Mark will be able to find a way to restore personal messaging functionality, so we can avoid creating such meandering threads just to keep up with one another.

Keeping you in my thoughts, Debra! Got my fingers crossed. And my happy dance shoes have been shined and placed in a lovely clear box in my closet where I can find them easily and pull them out when I need them!

August 16, 2012 at 3:28 am  #1246849    

blue skies

ssflxl,
Yes, I agree. I would say that 4 hours travel time in either direction is the breaking point (my reference being taking a bus or train from DC to NYC). As a one-day trip, it can be a 12 to 16 hour day. Even if almost all of it is sitting in a chair!

But I wouldn’t discount having Kaiser investigate potential trials on your behalf that might be geographically undesirable if they might have a real impact on the course of your illness. So much of the consultation and assessment occurs BEFORE you travel to meet with the study team, and you would not have to worry that there was an opportunity missed that in hindsight you might have pursued.

August 16, 2012 at 12:01 pm  #1246862    

Jazz

ssflxl,

I totally agree with Blue Skies’ succinct and well-put comment above. Have Kaiser investigate ALL potential trials, regardless of location, and whittle down choices from that.

My first oncologist also told me I was limited to Stanford, UCSF, and UCD – but don’t believe that. The oncologist who got me into Colorado submitted it, and it’s a Phase Ib trial. It’s a matter of your physician going up to bat for you with his chief, who has to approve the requests. Your physician is also the one who has to submit requests for travel expenses and testing to be covered. It’s possible but you have to convince your onc that it’s THE thing to do and you want to do it. I was very fortunate to have a progressive doctor (with whom I’m still in touch, even though he’s in private practice in SoCal).

I just returned from an overnighter in Colorado and it’s incredibly tiring. But I’d do it again, given the choice. I haven’t felt this good since 2011, and feeling almost normal? – Priceless! Even with only one lung.

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?

August 16, 2012 at 12:02 pm  #1246863    

blue skies

YAY, Jazz! You go girl!

August 16, 2012 at 12:17 pm  #1246864    

Jazz

Thanks, Blue Skies, and thanks for the update on Jing.

As for you, my dear… you have an astounding attitude! I’m so impressed by your energy and good cheer. Please keep us posted on your treatment progress. I hope all those evil mets are zapped to oblivion so you can take your shoes out and do a dance for yourself! Cheers and keeping my fingers crossed for you!


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?

August 16, 2012 at 12:20 pm  #1246865    

graceabchen

Blue skies: Thanks for giving us an update for Jing. She has been cared by a good team. Hope that she would overcome her difficulties soon. Thanks, AB

August 16, 2012 at 12:29 pm  #1246867    

graceabchen

ssflxl, Have you ever considered the Trial of Ariad Oral AP26113 Inhibitor of ALK and EGFR (
http://www.clinicaltrials.gov/ct2/show/NCT01449461?term=Ariad+AP26113&rank=1)? It has a location in San Diego. Good luck. AB

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