Holding Your Nerve

This topic contains 118 replies, has 24 voices, and was last updated by  laya d. 4 years, 4 months ago.

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June 23, 2013 at 7:58 pm  #1257500    

double trouble

uplifted by your spirit, educated by your vast understanding, supported and calmed by your words, and given the opportunity to witness true GRACE.

I am better for having had the opportunity to know you, and wish you comfort and peace.
Debra

June 23, 2013 at 10:13 pm  #1257506    

bob4beth

Dear CS, I pray that you find relief from the Afatinib and am happy that you and your husband found the afternoon peaceful. My wife is going thru a similar decline, suffering multiple symptoms of LMD and I have found hope and courage from your previous correspondence. We wish you peace and comfort in the days ahead. Bob


Sept 2012 my wife Beth was, 64 year old non-smoker dx stage 4 Adinocarcinoma NSCLC EGFR + with mets to liver, bones and brain. Sept 2012 operation to replace right hip damaged by bone met. Sept 2012 5 DVT found in legs. Started Lovinox. Oct 2012 started Tarceva 150 mg per day. January 2013 surgery to stabilize right femur followed by 10 radiation treatments. April 2013 radiation treatments to left femur. May 2013 dx LMD. Started pulse dosing Tarceva 1,500 mg/wk. Sept 2013 we lost Beth.

June 24, 2013 at 4:09 am  #1257509    

forherbie

CS,
I’m echoing the previous posters comments in how you are loved here at Grace. You are so valuable here with info and comfort for each of us. When one hurts we all feel it. With cancer we learn to take “one day at a time”. Hope you and your husband share many more.
Take care,
Anne

June 24, 2013 at 7:09 am  #1257514    

mikem

CS,

One of the things I have always loved about Debra is her abiltiy to say what everyone else is thinking and doing it so eloquently. I can’t begin to say anything better than she did, but know that I feel the same way. I know I tend to be silent on the boards these days, but I am always here checking in. I have followed you closely and very much hope that the afatinib helps and that you receive continued comfort. Wishing you well. –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.

June 24, 2013 at 8:47 am  #1257516    

neilb

CS: Thinking of you. You’ve always been one of my great online inspirations.–Neil


Never-smoker, male, age 53. Diagnosed with stage 1A adenocarcinoma in 2005. Lobectomy. Recurrence in February 2007. Therapies have included Carboplatin/Taxotere/Velcade (failed); Tarceva (8 months of stable disease before progression); Alimta/Avastin (complete response); treatment break; Alimta (complete response); Xalkori (since February 2012).

June 24, 2013 at 3:35 pm  #1257521    

laya d.

Our cs – –

I now have written and edited and rewritten and re-edited my post here a few dozen times. I am at a loss for words – – weeping openly at work. All I can say to you is that I LOVE YOU (yes…so American of me to be saying these things out loud) and that I am so very sorry about this mess! I hope that you know how very important…how very essential… you are. You have helped so many. You will continue to help so many. I wish it could have been 180 degrees different – – and that none of us here knew you because cancer didn’t know you. I wish…

And, like Jazz, I curse your growing belly and am clamping onto the hope that Afatinib will do something worthwhile for you. I LOVE YOU, cs…I LOVE YOU!

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.

June 25, 2013 at 3:18 am  #1257532    

njliu

Dear CS, I am one of your many cyberfans too. You have been so helpful and so inspirational. You are in our thoughts.
NJ


Wife, 56, Asian, 11/11 Dx Adenocarcinoma 3B, EGFR+. 12/11 Iressa, great response. 12/12 asymptomatic brain mets with possible lepto, 1/13 WBR, continue Iressa, 9/13 Local Progression at primary tumor, 10/13 focal radiation, 1/14 PET Scan:Tumor Resolution, continue Iressa, 6/14 PET shows flare up at same primary. 9/14 CT stable/MRI reappearance of brain mets, 4/15 stable brain mets, 5/15 increase in SUV and slight pleural effusion. 6/15 Afatinib + Cetuximab

June 25, 2013 at 2:36 pm  #1257535    

judys

Certain Spring – It seems many of us have reacted in the same way to your latest post. Crying was big with me and then a complete loss of words to form a reply followed by signing out….Thank goodness we have people like Debra who state so well the feelings that are in many of our minds. My thoughts are with you and your husband.


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

June 26, 2013 at 11:21 am  #1257550    
Denise Brock
Denise Brock

The weird thing about this cyber-world is that everyone cares so deeply about each other yet have often never hugged, never met, often don’t even know what each other look like. I love it and I hate it, honestly. I tell my daughter that the only things that truly matter in life are family and friends, and the other people around us. I know other things are important too, but if I have learned anything it is that real happiness comes from love.

Here we have met so many like people, and really feel for them and have a kinship. But we can only cry from a distance and not be there for our friends, which for ME, is really really hard. I wish, CS, that we could all meet. That we all could hug at least once, it feels like it would complete a circle.

I wish you well, and having been a caregiver, I wish your husband well. There is an element of shock as you go through this, watching your friend or spouse (or…) go though what they are going through, knowing that right now, you live and breathe them. Nothing else matters.

We love you CS. I hold your hand in my mind, and I won’t let go.

D

June 27, 2013 at 9:59 pm  #1257591    

laya d.

CS. . .

Just want you to know that you’ve been on my mind all day and all night. . .I am holding you close. . .and I hope you are comfortable. . .

xoxoxox,
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.

June 28, 2013 at 8:05 pm  #1257605    

double trouble

Sending love.
Debra

June 29, 2013 at 3:33 pm  #1257625    

Michelle Ward

Certain Spring

Its Michelle from deep fried mars bar country, you probably don’t remember me but i came on line with grace with a lung nodule and you sent me some encouraging messages while i waited on the ct scan. I have logged on periodically to see how you all are doing, I think about you in particular and i am deeply saddened by your progression. I pray you get some relief from the new drug and just wanted to let you know im thinking of you, you have helped so many people out there and i am one of them. You and your husband will be in my prayers. xxx

June 29, 2013 at 5:31 pm  #1257628    

aunttootsie001

Michelle and everyone else said it better than I ever could! I came to Grace by recommendation of Judy! Have been addicted to it and you’re one of the reasons! Always with good advise or just a good Cheering up! I hope and pray whatever treatment they have chosen gives you yet again an extension on your Glorious life! Lorrie

June 30, 2013 at 9:56 am  #1257641    
catdander forum moderator
catdander forum moderator

I love you CS, I hold your hand in my mind and I won’t let go.

Janine

July 5, 2013 at 5:01 pm  #1257740    

double trouble

My thoughts are with you daily.
Debra

July 6, 2013 at 10:21 pm  #1257761    

laya d.

As are mine. . .

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.

July 7, 2013 at 1:26 pm  #1257766    

marisa93

And mine as well….

(((hugs))),
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 18, 2013 at 10:24 am  #1258031    
Denise Brock
Denise Brock

I wanted to share with those here the thread that our Janine started yesterday, upon hearing sad news. So sorry to hear but I think everyone would want to know.

http://cancergrace.org/topic/only-the-certain-spring

July 18, 2013 at 10:41 am  #1258033    

laya d.

:O(


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.

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