Update Re Laya's Mom

Portal Forums Member Updates Lung Cancer Member Updates Update Re Laya's Mom

This topic contains 257 replies, has 52 voices, and was last updated by  laya d. 1 year, 6 months ago.

Viewing 20 posts - 41 through 60 (of 258 total)
Author Posts   
Author Posts
September 25, 2012 at 3:31 am  #1248358    

fortmyr

Laya, I hope the stent provides quick relief to your mother and that she tolerates it as well as our dear CS.
Wishing her luck with the procedure and the outcome,

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.

September 25, 2012 at 5:22 am  #1248362    

Dr West

Laya,

I really just wanted to wish your mother luck with her procedure. I’ve seen such varied results with stents that I don’t think I can draw any conclusion except that they sometimes work, and sometimes the procedure isn’t successful.

With regard to the PleuRx catheter, one issue with longitudinal use is that losing lots of pleural fluid regularly also entails losing some important proteins in large volumes, which can lead to problems with immune function and malnutrition. That isn’t an issue unless it’s more of a chronic management issue, but given the slow pace of her disease (a very good thing) and her responsiveness to treatment (also very good), that’s a potential issue with regard to placing a PleuRx catheter.

Thanks for your update, and we’ll look forward to more. Thinking 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.

September 25, 2012 at 5:39 am  #1248363    

sleepless in jersey

Hey Laya…I’m on the prayer/good luck wagon as well. Keep that positive energy that you have goin and Mom will do just fine.
Hugs your way…
Sleepless

September 25, 2012 at 5:56 am  #1248365    

double trouble

I’m so sorry Laya. If I’m understanding, the drain and the stent are to alleviate symptoms while they figure out how to repair the fistula?

I will be thinking about you both and I hope she gets some relief soon. This is so hard. I will be watching for updates.

Love Debra

September 25, 2012 at 6:10 am  #1248368    

mikem

Hi Laya, I have been wondering about you and your mom lately. I hope everything goes well with the procedure and that she gets some relief. Remember to take care of yourself too. –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.

September 25, 2012 at 7:05 am  #1248371    

catdander forum moderator

Laya,
Hoping your mom does really really well with the stent. I am sending healing thoughts to her and warm hugs to you.
xoxo,
Janine


My husband, 53 @ dx of stage 3 squam nsclc R. pancoast tumor 8/09 caused destruction of 3 ribs, touching brachial plexus. 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable). Chemorads, 9/09. MRI by pancoast specialty surgeon 11/09 spine met found, stage IV, Rad to spine, Chemo changed from cis/etop to navelbine/carbo. 6 cycles total. Tarceva 2/10-11/10. 3cm tumor L lung, biopsy undx w/collapsed lung. Gemzar, 12/10 through 7/12. NED 3/12, stop tx 7/12. Remains NED as of 8/14.

September 25, 2012 at 9:48 am  #1248373    

judys

Hi Laya – Want to join with the others in sending you and your mom my best hopes for a successful treatment. Unfortunately this disease keeps throwing things at us—-


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

September 25, 2012 at 2:11 pm  #1248380    

Dragonfruit

Dear Layla,

Wishing for perfect stent placement and relief for all of you. Will be thinking of you and your mom.

Anna


Mom dx stage IV squamous NSCLC with exon 19 mutation at age 64 in 5/09. Summer ’09: Gamma knife, WBR, cis/gemzar -> miserable. 8/09 – 9/10:Tarceva; major response. Fall ’10: thoracotomy for complex effusion + femoral rod for unstable femur met; rad to femur; Abraxane. 12/10: WBR again for multiple tiny brain mets. 1 – 3/11: navelbine; progression. 4/11: carbo/cetuximab/tarceva. 5/11: hospice. Died peacefully at home, surrounded by family, on 6/26/11.

September 25, 2012 at 3:39 pm  #1248381    

cards7up

Laya, I’m sorry to hear of this latest development. Praying the stent is the answer even if only temporarily while they come up with a long-term solution. Keeping you all in my thoughts and prayers.
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011. Local recurrence, surgery to remove LRL 8/29/13. Chemo carbo/alimta x3.

September 25, 2012 at 4:50 pm  #1248383    

wadvocator

Layla,

Even though I am a Christian, I will also be rubbing buddha’s stomach for your mom’s successful procedure and fast recovery!

September 25, 2012 at 5:37 pm  #1248384    

Sherry

I just wanted to let you know that I am thinking of you and your family. It took me having the issues I did this summer to see how truly hard this is on a family. I always felt more like it was just me going thru it, but that is so wrong. So, I will keep you in my prayers and I hope that the stent works for her.


ME: Diagnosed Stage 1A in July 09, ULL, no further treatment. Diagnosed with breast cancer in Feb. 11, again Stage 1. All scans were clear until headaches started in April 2012. In July 2012 was diagnosed with a metastatic brain tumor from lung, surgically removed and treated with cyberknife. Now on Tarceva. Clear scans to date. DAD: Diagnosed stage IV in Dec. 09, was on Tarceva until April 2012, then Alimta once every 3 weeks. November 27, 2012 entered the kingdom of Heaven.

September 25, 2012 at 7:38 pm  #1248388    

LH

Laya –

You and your Mum and family are in my thoughts.

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.

September 25, 2012 at 9:10 pm  #1248392    

dbrock

Laya, my best to you both. You are in my thoughts.


Operations Manager for GRACE, best friend diagnosed with lung cancer, June 2008. She passed on July 31, 2010, after she showed all of us how to live. She lives on in her family and friends and if she were still here today, she would be leading the the battle. Thank you, Melissa, for letting me be a part of your story. http://www.facebook.com/deniseabrock http://www.facebook.com/cancerGRACE

September 29, 2012 at 4:33 pm  #1248498    

double trouble

Hi Laya. Just wanted you to know I’m thinking of you and hoping your mom is doing better. Much love to you both.
Debra

October 1, 2012 at 10:31 am  #1248526    

Lembird

Laya,

I don’t post very much these days, although I try to keep track of each of you, while I am dealing with my own situation.

Please know that your Mom (and you) are in my daily prayers and I am wishing good results for her and quality life going forward.

Be well,
Lembird

October 2, 2012 at 3:34 pm  #1248574    

bh

Dear Laya,
Hope mom is doing well on the stent with no complications and that it is working out. Keeping her in my prayers.
Hugs.


77 yr old mom, never smoker, ER on 9/1/11 for breathlessness, diagnosed with malignant pleural effusion 9/8/11, stage 1V bronchiogenic adenocarcinoma of the lung. Tarceva 9/24/11; 4th thoracentesis on 9/26; diarrhea & nausea on 10/5 with rashes EGFR & ALK tests negative 10/7, stop tarceva 10/8, ER – 10/13, 5th thoracentesis, renal failure 10/15 – blood transfusion 10/27; Alimta, well tolerated; 11/9 stroke – lost right side and speech, 4/3 – hospitalized due to sugars of 803 due to decadron, 4/7 seventh round of Alimta with ongoing rehab for stroke. CT of 6/24/13 showed recurrence, re-start Alimta 7/11/13.

October 4, 2012 at 8:14 am  #1248648    

laya d.

Hi Everyone:

Sorry for my delayed update (and thank you Debra for your e-mail reminding me that I do need to keep my Grace Family in the loop on things). . .

Well. . .suffice it it to say, it’s been an incredibly hard and trying 2 weeks. The stent was placed two Tuesdays ago, with a plan for my Mom to stay overnight at the hospital. Just hours after the stent placement, my Mom breathing had a very distinct gurgle and she had the sensation that she was choking on phlem/mucus, although her 02 saturation was always in the 98-99 range. She continued to feel worse and worse, wasn’t able to really get out of the hospital bed…could barely talk, and only could lay on one side to get relief from the breathlessness she was feeling (no sitting, no standing, no walking, no eating, etc.). The hospital stay ended up being a 4 day stay, and they performed a repeat bronchoscopy last Thursday to see what was going on and to suction out this phlem/mucus that was causing her to gurgle loudly. After the procedure, they told us that the stent was placed “perfectly”, they could not see any of the serro-sangunous liquid previously seeping from the fistula dripping down from the distal end of the stent (which was in her left main bronchus) – - but that they did see this stuff (which they said was white and as thick as wallpaper paste) attached in a 360 degree fashion to the end of the stent and around her main left bronchos (this is 2 days after the procedure). They didn’t know what it was, had never seen anything like it before, but “peeled it off in two pieces and removed it). BTW: my Mom’s actual surgeon did not do this part – - he was at a different hospital and therefore did not see with his own eyes what this stuff was. After the bronch, the gurgling went away and my Mom was able to sit, stand and ea t- – which made us happy, and she was discharged on Friday. Continued below. . .


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.

October 4, 2012 at 8:24 am  #1248649    

laya d.

(Continued from above) But, by Saturday afternoon, she was in the same shape she had been in the hospital. At discharge, they told us “her body was just reacting to the stent and that she just had to get used to it.” So, we rode it out until Sunday night. My Mom absolutely could not handle it any more. She again couldn’t sit, stand, eat, walk, and couldn’t cough this gunk out. So, we called her surgeon’s call center and were instructed to take her to the ER to have a pleurx cathetar placed. The surgeon’s theory was that even though the docs couldn’t see it when they bronch’d her, she actually was seeping the fluid through the fistula – - and that it was slowling working its way down to the end of the stump and coagulating into this jelly-type matter. So, removing the fluid out of the right cavity would help her. So, they put in the pleurx in the ER and then watched her all Monday. She did not get better and again demanded that they remove the stent. On Tuesday afternoon, they bronched her again and removed the stent. Her surgeon resisted a bit and wanted my MOm to ride it out some more, but my Mom said no. When thet bronched her, what they saw was exactly what they had seen the Friday before. . .that white gunky stuff at the end of the stent that she could not cough up. So, the stent is now gone, the pleurx catheter is in, and we will need to drain the fluid every couple of days probably for the remainder of my Mom’s life unless the fistula somehow gets fixed. A nurse will be coming to the home to do this for the first few weeks, but after that, we will have to do it. The nurse at the hospital had me do it once before my Mom was discharged last night, and it wasn’t hard to do. The hardest thing for me is to make sure we keep the dressing sterile, etc., to ensure that she doesn’t get infected. She’s home now and she is comfortable.

In terms of cancer, we are restarting Tarceva 100 mg today (probably until the next scan in 2 months).

Love 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.

October 4, 2012 at 9:01 am  #1248650    

Luke

Laya, I am so sorry to hear what your mom is going through, and I hope the symptoms will resolve quickly and that relief will come soon.

My thoughts are with you and your family.


Aug/11: Dad (63) dx Stg.IV lung adeno with brain mets. EGFR / ALK -ve. WBRTx15 | Sep/11: 1st-line begins – Gem/Carbo | Nov/11: PET shows partial response | Jan/12: Maintenance begins – Alimta | Apr/12: Suprise BRAF mutation identified | Feb/13: PET shows mixed response (full/partial resolution all over except lung primary + new spinal site) | Mar/13: 2nd-line begins – Novartis LGX818+MEK162 trial

October 4, 2012 at 9:23 am  #1248651    

catdander forum moderator

Dear dear Laya, How awful this da.. cancer is. I absolutely hated to read your note but thank you very much for providing us with such a thorough update.
I wish I could do or say something to help.
I hope your mom gets comfortable with her new attachment and it works really well for her.

With Love and Hugs enough for the whole family,
Janine


My husband, 53 @ dx of stage 3 squam nsclc R. pancoast tumor 8/09 caused destruction of 3 ribs, touching brachial plexus. 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable). Chemorads, 9/09. MRI by pancoast specialty surgeon 11/09 spine met found, stage IV, Rad to spine, Chemo changed from cis/etop to navelbine/carbo. 6 cycles total. Tarceva 2/10-11/10. 3cm tumor L lung, biopsy undx w/collapsed lung. Gemzar, 12/10 through 7/12. NED 3/12, stop tx 7/12. Remains NED as of 8/14.

Viewing 20 posts - 41 through 60 (of 258 total)

You must be logged in to reply to this topic.