Update on my husband, D

Portal Forums Lung/Thoracic Cancer Lung Cancer Member Updates Update on my husband, D

This topic contains 74 replies, has 27 voices, and was last updated by  slimer 3 years, 2 months ago.

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May 2, 2013 at 9:35 pm  #1256149    
Denise Brock
Denise Brock

SO HAPPY for you both, this is just excellent news. Breathe! I am sure you are now.
D

May 2, 2013 at 10:15 pm  #1256157    
Dr West
Dr West

I’m so very happy for you, Janine! That’s absolutely wonderful!

-Dr. West

May 3, 2013 at 1:42 am  #1256164    

certain spring

Excellent news. Here’s to many more walks with the dog.


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.

May 3, 2013 at 5:58 am  #1256168    

mikem

Absolutely awesome news! Congratulations! –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.

May 3, 2013 at 7:51 am  #1256170    

Luke

This is proof that there is always hope in the darkest of places. I am genuinely happy for you Janine. And I think you and D truly deserve this.


Dad (then 63) dx Stg.IV lung adeno with brain mets in 2011. EGFR / ALK negative. BRAF positive.
First line: Carbo+Gem / WBRT
Maintenance: Alimta
Second line: LGX+MEK clinical trial
Third line (present treatment): Keytruda

May 3, 2013 at 8:00 am  #1256172    

forherbie

Janine,
I am so happy for D’s NED—-great to hear such up lifting news. It is a joy to “see” all the happy dancers—I’m doing a little Zumba.
Anne

May 3, 2013 at 1:41 pm  #1256191    

Jazz

Janine,

How wonderful this news is. How powerful and deserved! Karma is a funny thing, and it sounds like it’s wrapped both of you in its magic carpet for a bit. Wishing you and D long and fabulous adventures… And, THANKS for being there for all of us, all the time. (Especially when we crawl down our rabbit holes…)

Love and respect,

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?

May 3, 2013 at 7:41 pm  #1256206    

judys

Great stuff! It’s so good to read news like yours— Doesn’t happen enough.


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

May 3, 2013 at 9:16 pm  #1256209    

aunttootsie001

Janine I can’t tell you how very Happy I am for you and your Hubby! We don’t get such Good News very often so for him to be NED for this long is just awesome! I don’t get my CT until the end of this month! This is very nerve raking! I can’t wait to get the NED once again! Lorrie!

May 5, 2013 at 11:25 am  #1256245    
catdander forum moderator
catdander forum moderator

Thank you all for the marvelous replies. It’s amazing news and we are stunned and happy. As Simon said, there’s always hope that tomorrow will be a better day. I just didn’t expect how much better.

Lorrie, Big hopes for a good scan in a few weeks. I know the scanxiety has already started. Breathe.

cyber xoxo

May 5, 2013 at 6:28 pm  #1256250    

aunttootsie001

Slimer, you’ll be wondering why you waited so long! Can’t imagine 50 CHEMO’s with your own viens! Hopefully your doing well! I tend to forget it is even there!
Cat! So very happy for you and especially for D! I feel like Slimer, following him in his wake sounds awesome! Lorrie!

August 7, 2013 at 11:51 am  #1258504    
catdander forum moderator
catdander forum moderator

Lorrie, D is still paying for over 2 years of chemo with his own veins. One year off and he has neuropathy and cold hands. I don’t think it will be an option moving forward.

Speaking of moving forward……..D is still NED 1 year without treatment.
Next scan, CT in 6 months.

Thank you all for being so supportive, I just wish everyone could be as lucky.

xoxo,
Janine-exhaling

August 7, 2013 at 5:27 pm  #1258508    
JimC Forum Moderator
JimC Forum Moderator

Fantastic news, Janine! So very, very happy for you and D! Enjoy the scanxiety-free months!

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 7, 2013 at 6:59 pm  #1258511    

cards7up

Congrats and here’s to continued success and NED! 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. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

August 7, 2013 at 10:05 pm  #1258516    

laya d.

YAHOOOOOOOOOOOOOOOOOOOOOOOOOO! Elated!

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 10:15 pm  #1258520    
Dr West
Dr West

That is wonderful! So happy for both of you — congratulations!

-Dr. West

August 9, 2013 at 1:05 pm  #1258564    

slimer

Janine,

What great tidings. Still NED and 6 months to next scan! Go D! I almost would be willing to take the risk with active cancer to have a scan every 6 months. This every 3 months is getting old, and you are almost in perpetual Scanxiety mode.

Right now I am on my second and final month of a shortened Gemzar cycle. Will have my 73rd Gemzar infusion later today and will complete 75 before the next CT. If further growth beyond the two areas of 5mm growth on last scan, I will go for the Merck PD1 trial. If stable, I’ll argue to continue Gemzar even if I lose out on the trail. I just feel too good.

Dr. West doesn’t know this, but he saved me from being taken off Gemzar almost 1 year ago because I read his review of the MSK radiology accuracy study. I argued that the radiologist measurements finding progression were wrong because it was just mm and the smaller the tumor the easier to get 20% growth. There was also big growth in mediastinals that I just couldn’t buy. I asked my onc to go by the “clinical correlation”, which was that I was looked perfectly normal and felt better than before cancer. He agreed to another cycle. Sure enough, on the next scan the &^%%$# radiologist had me shrinking, when the truth was probably just a more accurate measurement or another imprecise measurement but coming in lower. I hope that is my case again, but I doubt it. Now I am just hoping for STABLE. D’s story still keeps me hoping and going.

August 9, 2013 at 9:14 pm  #1258566    

Luke

This is exhilarating news! You and D DESERVE to be this lucky.


Dad (then 63) dx Stg.IV lung adeno with brain mets in 2011. EGFR / ALK negative. BRAF positive.
First line: Carbo+Gem / WBRT
Maintenance: Alimta
Second line: LGX+MEK clinical trial
Third line (present treatment): Keytruda

August 10, 2013 at 8:21 am  #1258571    
catdander forum moderator
catdander forum moderator

slimer, D had a small progression about 6 months in gemzar that really was close to enough to make a switch in treatment. I don’t remember what the numbers were but I put in my 2 cents worth to stay the course which he did and next scan there was shrinkage. I wouldn’t have had that kind of assurance in my input if it weren’t for Dr. West and Grace.
They’re actually seeing real faux progression then shrinkage with the pd 1 and or pd l1 drugs.

Thanks to all for your excited words of congrats. We all deserve to be so lucky. Cyber xoxo to my Grace family.

August 10, 2013 at 12:00 pm  #1258582    

delialolly1

Congrats Janine! Happy for you and D and wishing you continued good news.

Blessings,

Delia


17 July 2012: Husband 46, previous smoker, presented with huge plural effusion, hospitalised (stopped smoking about a week or two before dx) 23 July 2012: Drain fluid and do biopsy , 24 July 2012: Dx adeno nsclc, stage 3b, poorly differentiated tumor, , tx alimta four times, showed shrinkage, 31 Oct 2012: Start with tarceva 150mg, not sure whether EFGR was tested 15 Nov 2012: Stop Tarceva for 4\5 days due to severe facial rash. 20 November 2012: Back on Tarceva, more determined than before….

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