Topic: Update On My Mom | GRACE

Tagged: acquired resistance, brain mets, progression, re-biopsy

This topic contains 86 replies, has 31 voices, and was last updated by anita l 11 months ago.

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April 6, 2012 at 7:14 am #8724
laya d.	Hi Friends: My Mom had scans done last Monday and we met with her Med. Onc. on Wednesday for the results. The tiny nodules in her left lung continue to get bigger (the one that was 6 mm two months ago is now 9 mm, etc.). But, the more alarming thing is that for the first time we heard that some of her mediastinum nodes, as well as her right supraclavical node, have increased in size (and they are in the 1 – 2.5 centimeter range – - although the growth from the last scan remains in the mm range). Lymph nodes had NOT been mentioned in any of the prior report. . .but when we pulled the images up and put them side to side (meaning the February scan and scan from Monday), the lymph nodes in fact were very similar in size (and just a little bigger). Still don’t know why the prior radiologist had failed to mention these. Anyway, the long and the short of it is that we are changing course. We had a re-biopsy done on the supraclavical node the same day, and the preliminary results are that it is adenocarcinoma (as some of you may recall, the pathology on one of the nodes in my Mom’s lung back in December was that it had morphed from adeno to squamous). My Mom’s doc wanted a re-biopsy so that she could pick between carbo-alimta and carbo-gemzar. With it coming back as adeno, she is going with carbo-alimta, which we are scheduled to begin on 4/18/12. My Mom is to stop her Tarceva a week beforehand. Additional testing – - including further molecular testing – - is being done on the tumor (including trying to figure out the reason for resistance). What has me concerned right now are the two suspected tiny brain mets (in her frontal lobe – - 2 mm and 3 mm) that have always appeared stable on MRI (since Set. 2011 at least) – - but my Mom has been on Tarceva the whole time. So, I’m worried that Tarceva, in fact, is what has kept these things at bay and that they now will progress too. I e-mailed my Mom’s Onc. about this, and she reminded me that: (1) we don’t even now that these things are mets; (2) that Alimta also crosses the blood-brain barrier; and (3) my Mom’s next brain MRI is in early May, and if these things look to be growing, we can do gamma knife. BTW: No doctor has ever mentioned these two suspected mets to my Mom and my Mom doesn’t read reports. She will be absolutely CRUSHED about this if and when we tell her. Anyway, we are not happy. . .This all came down the very same day that my husband’s dear Aunt passed away from lung-cancer-related complications. So, as a family, we are feeling quite pummeled. 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 6, 2012 at 7:58 am #8729
double trouble	Dear sweet Laya, I am so sorry. You know you are in my heart and I wish I could put my arms around you and hold you for a bit. I’m comforted that you have a very strong family around you, and no doubt many many supportive friends. I’m sick that you are having to deal with all of this. Debra 09/10 CT Bil. GGO’s 12/10 L L VATS Segment Adeno/BAC Kras+ 1st Primary Stage Ib 05/11 CT L Stable RU 1.3 cm nodule, 1r & 2r LN 08/11 PET/CT L Stable, mild uptake in R nodule, LN 09/11 EBUS N1, N2 LN Adeno+ 2nd Primary Stage IIIb 10/11 Start chemorad Cisplatin 11/11 Stop chemorad 4 cis/38Gy blood counts 12/11 PET/CT FDG neg 03/12 PET/CT Stable R nodule R hilar SUV 3.4 06/12 Growth R hilar SUV 9.5 07/12 Surgery recommended Mayo thoracotomy pneumonectomy EBUS R Hilar Adeno+ 08/15/12 Brain MRI Normal 2nd Opinion Duke recommends VATS pneumonectomy 09/12 PET/CT hilar growth, new R 2.2 SUV 1.5 by 2 cm Hilar LN Kras+ Bronch/Lavage (hemoptysis) Duke Mediastinoscopy R Lung Unresectable, Bronchoscopy #7 LN Adeno+ ALK+ 10/12 HRCT 4 RUL nodules (3new) “enlarging” R Hilar 12/12 PET/CT 12/19 Start Xalkori 02/12 Decreased FDG R Hilar. New nodules “waxing and waning, sugg inflam/infect.” Not neoplasm! Part of RUL collapsed
April 6, 2012 at 8:19 am #8730
cards7up	Laya, your mom is a fighter and I’m sure she’s not giving up the fight now. I’ve been reading where people do live with very small brain mets without treatment for quite a while. Praying all goes well with this next round of treatment. Give your mom a big hug!!! {{{{HUG}}}} Take care, Judy Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
April 6, 2012 at 9:27 am #8731
laya d.	Thank you Debra and Judy. . .I love you guys so much. 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 6, 2012 at 10:02 am #8732
Dr West	I’m very sorry to hear about these findings. I certainly understand your concerns, but I do think that this proposed plan makes sense. It’s just an unknown whether the Tarceva (erlotinib) is holding much or any of her cancer at bay right now, but knowing that she’ll be closely monitored and can add back Tarceva or do stereotactic radiosurgery for those questionable brain lesions provides fall-back positions. However, I do wish everything weren’t coming at you and your family all at the same time. My best to all of you. -Dr. West Howard (Jack) West, MD Medical Oncologist Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.
April 6, 2012 at 12:44 pm #8739
laya d.	Thanks, Dr. West. I really appreciate it. 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 6, 2012 at 1:32 pm #8740
catdander forum moderator	Laya, I wish I could say or do something to take away some of your unhappiness and stress. You are in my thoughts and I send hugs and hope that your mom catches a break with her next treatment. xoxo, Janine catdander’s husband: 8/25/09 thoracotomy biop dx stage 3a squam nsclc pancoast tumor right 9/16-11/4/09 chemorads cis/etop, 10/30 MRI to brachial plexus found c3 met changed stage 4 11/9-20 rads to c3 w/concurrent 11/9-1/18/2010 carbo/navelbine Feb-Nov 2010 tarceva until first progression 11/29/2010 3cm upper left. 12/14/2010 Gemzar Scans remain stable on Dec. 2011 still on Gemzar. NED March, July, Nov 2012,Feb, and May 2013. Treatment break began late July 2012.
April 6, 2012 at 6:03 pm #8745
judys	Laya, I know you will continue to be the strong loving advocate for your mom that you have always been no matter what comes next. You’ve all been through so much. Sometimes the bad news keeps on a’comin…. Not fair— I think what radiologists mention and omit in their reports will always be a mystery to me. My last scan mentioned the growth in a pleural effusion which hadn’t be mentioned for years; same with something on an adrenal gland. Then oncologists say it’s really nothing. Huh? Try to take time just for yourself. We can only do so much even though we want to make it all better. I have a friend who is like you: the strong one who everyone in her family looks to to solve it all. But she too needs hugs, time to recharge and the support of her friends. Hugs to you and your husband on the loss of ‘auntie’. Never-smoker; Diagnosed 2/2007 at age 64 with NSCLC adenocarcinoma, Stage 3b. Carboplatin/taxol/avastin: 3/07 – 6/07; radiation 8/07 -9/07; Avastin 10/07 – 12/07; Nodules in prev.clear rt lung; repeated carbo/taxol/avastin 1/08 – 3/08; Tarceva 4/08 – 9/11; radiation to soft tissue mass between two ribs 10/11; Alimta 10/11 – 2/12; treatment break; return to Alimta 5/12 – 6/12. Taxotere 7/12 – 10/12; treatment break 11/12 – 1/13; scan showed progression 1/13; restarted taxotere with zometa 2/13
April 6, 2012 at 7:51 pm #8747
laya d.	Thank you Janine and Judy. . .I really appreciate your words and find great comfort in knowing that you are out there sending well wishes our way. . . Much love to you both, 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 6, 2012 at 9:21 pm #8748
ssflxl	Laya, I am sorry to hear about what’s happening – when it rains, it pours. try to take one day at a time so you don’t get overwhelmed. sometimes radiologist miss things on scans because they are too focused on certain areas. Hopefully, chemo will work on your mom. if brain lesions get bigger, then SBRT. ssflxl Non smoker Asian F, St 4 NSCLC – 11/2010, 6 cm LUL mass, met to paraspinal muscle, +EGFR at Exon 21 L858R, started Tarceva in 11/2010, rad to lung mass and met in 11/2010. 5/2012 – PET showed increased SUV in primary cancer, new 1.6 cm lesion in left thoracic inlet that caused Horner’s syndrome. Cyberknife to lesion – 5/2012. Restarted Tarceva at 75mg/day on Memorial Day 2012, reduced to 50mg. 8/2012 – PET- thoracic inlet lesion now gone. 11/2012 PET showed inc SUV in primary tumor and ant mammary node, and some SUV uptake in a fibrotic area in apex. Biopsy of this new uptake area showed fibrosis and scant atypical cell. Cyberknife to mammary node, continue Tarceva. PET-3/2013- no sign change.
April 6, 2012 at 10:09 pm #8750
laya d.	Thank you ssflxl. . .I really appreciate it. . . 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 6, 2012 at 10:46 pm #8754
LH	Just sending my good thoughts to you and your family. Be good to yourself, Louise 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.
April 7, 2012 at 1:17 am #8759
kej	Laya, Cancer stroke back, I have not forgotten what it feels like knowing that and also knowing more than the patient. I am posting to help you keep having in mind that there are still a lot of treatment options to pursue and the gamma knife does local wonders. All the best Husband 56 y, 01/10 Stage IV adenoc. Tumor 5*5 cm LLL, 3 cm hilar mass, carina. Adrenals, peritoneum, os sacrum. 4 rds Cb+Alimta. 05/10: tumor shrunk, mets invisible. Neg of DEGFR, KRAS, EML4/ALK,HLA-A2. 06-07/10: chemorad. 09/10:SRS three tumors. 11/10: chest NED , SBRT L adrenal + retroperit nodule. 01/11: 6 mm retroperit nodule, chest NED. 02/11: brain surgery. 05/11: nodule growth, regrowth in brain, 1 cm tumor RLL. 06/11: Start Alimta. 07/11 SRS, three tumors, pronounced Alimta response. Passed away 11/11
April 7, 2012 at 3:13 am #8760
njliu	Hi Laya, I am sorry to hear what is happening. Do you consider keeping Tarceva on while you add Carbo+Alimta, since stopping Tarceva runs the risk of “flare up”? My thought is with you and your mom. NJ Wife, 54, non-smoker, Asian. 10/11: Persistent cough and loss of voice, dx Stage 3B Adenocarcinoma, EGFR Exon 19+ 11/11: Started Iressa. 02/12: CT Scan shows 50% reduction in primary tumor. 02/12: Reduce dose on Iressa by 50% due to side effects. 06/12 PET and Brain MRI stable. 12/12 PET Scan stable, Brain MRI shows multifocal brain mets, and possible Leptomeningeal Carcinomatosis. Spinal MRI shows no mets. 10 session WBR. Revert to full dosed Iressa. Tolerable side effects.
April 7, 2012 at 10:01 am #8769
blue skies	I am so sorry to hear about your aunt. I know that this is a blow for your whole family. As for the developments with your mom, I am very heartened by your oncologist’s response and, if I were the patient who received this news, it seems not so awful…especially the part about the fact that you can’t be sure what you are seeing on the scan of her brain are even mets. I found the carbo/alimta combination, followed by alimta maintenance to be very well tolerated and very effective (and one of the longer lasting treatments). I hope your mom’s experience will be similarly positive. So…take another deep breath…don’t mention the brain mets…and keep on being your fantastic Laya self! Go buy something delicious to eat for Easter! I’ll be waiting to hear how things go from here. It’s a bumpy road we’re all on together. Just keep on holding on tight…well, not too tight!
April 7, 2012 at 10:35 am #8774
mikem	Hi Laya, As ssflxl.noted it is pouring but hopefully that means there is nowhere to go but a dry spell. I really hope that things turn the corner and start to look better. As sappy as this sounds, even with rain there are sometimes rainbows and I wish you and your mom many going forward. — mikem 55 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. April 2013 test still no recurrence indicated. Noted some infection (Had really bad chest cold when CT done) next scan in July to be safe (3 mo instead of 6 mo)
April 7, 2012 at 10:43 am #8775
certain spring	Poor Laya, what a time you are having. I don’t want to be crass but wanted to offer my experience just in case it helps at all in thinking about how to tell your mother what is going on. At dx I was too terrified to hear any details about the brain metastases – their number or their size. My husband insisted on ringing the doctor to find out more information, and it did help to hear that most of them were very small. It is also true that MRIs are hard to read, and they can be mis-read more easily than you or I or a layperson might imagine. I know this from a recent run of MRIs that appeared to show something which then resolved or vanished. My best wishes to you and your mother.
April 7, 2012 at 3:55 pm #8786
cpmcg - Candy	Hi, Laya, I’m so sorry to hear of your mom’s ongoing struggles. She is so blessed to have you. I wish there were more things to offer or ways to help you both. Cancer is such a rocky journey with just not enough hope to look forward to. It definitely does stink. Give her my best; we are kind of running on parallel tracks with our cancer battle, and I can’t tell you how much I sympathize with her – and with you. Daughters are priceless. Take care, Candy
April 8, 2012 at 2:06 pm #8796
Dr. Weiss	I do frequently follow tiny spots on MRI and have had a lot of success with this strategy. By “success” I mean that I’ve avoided or substantially delayed radiation to spots that either never turned out to be cancer, or were well controlled with whatever other systemic therapy that I was using. The only thing to be careful about is that careful observation not become a euphamism for ignoring–spots that are being followed need to be serially imaged to keep any eye on them.
April 8, 2012 at 5:23 pm #8803
Jazz	Laya, Happy Easter! I hope your family got a little distraction with a bit of easter egg shenanigans. I’m so sorry about the recent developments with your Mom. On the bright side, it seems she is in superb hands! If I were experiencing these issues, I doubt I would get a re-biopsy and especially more testing for molecular markers, not to mention brain MRI’s every two months. So at least you can rest assured her treatment is well-managed (thanks to you, I’m sure!). I know your Mom’s a fighter…she produced you, after all Hang in there, kiddo. You are such an amazing pillar of strength! Don’t forget to replenish the source Hugs, Jazz Dx 6/06 Stage IV Adeno. EGFR+ (exon 19 del), T790m+. Rand trial 2cyc Carbo/Doce/Avastin + 2 w/Gem; Bev. + placebo maint. 8/06-4/07. Study unblinded; Alimta + Tarceva 5/07 – 2/09. NED to 8/09. Tarceva 150 9/09-5/11, SBRT/XRS to lung & spine met 2/11. UCD Trial MK2206 (AKT inhibitor) + Tarceva 5 – 12/11. Afatinib+cetuximab trial @U of CO 2/12 -2/13. LL collapsed. Brain MRI 7/26 – clear. 12/12 CT mild prog. 1/29/13 PET – PD. Start Carbo-Gem-Tarceva then move to Plan B: CO-1686 or MK-3475 @UCLA …?