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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May 31, 2013 at 10:15 pm  #1256924    

laya d.

Jazz…Our Jazz – –

I’m so sorry about all of it. . .the loss of your Dad being at the forefront, very closely followed by my hopes and wishes that the pinch in your side is nothing more than a pinched nerve. But, do what Janine said – – call someone and get some meds.

I’m too gutted and can’t find more words right now. . .Heartbroken actually. . .

. . .and adding some more of my own tears to the brew.

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 1, 2013 at 10:16 am  #1256931    

chebird

Wow, you all are so remarkable.

I am so sorry for these turn of events in CS’s and Jazz’s life. Like Laya, I too feel gutted. I just lost a good friend in a car crash two days ago. The sadness right now for everything is at times overwhelming. I am praying for you all here, that God will be gentle.

Love you all,

Holly


- Husband: 7/11, 8+ cm Pancoast into T1, T2 and 3 ribs. – Fall 2011 chem/rads, partial response with tumor shrinking to 5.5 cm. – EGFR + Tarceva started 10/11 – 1/12- 4/13 Happy with NED – 4/13 intradural mets to spine and head. – 5/13-7/13 radiation to lower half of spine and 2 spots in head. Uncontrolled pain. – Mom: VATS for 1a 7/09. Mets to liver. stage 1V 7/13. Chemo. – Step-mom: dx 11/12 squamous stage 111. chem/rads.
9/27/13 Dx multiple LMC tumors throughout spine

June 2, 2013 at 5:57 pm  #1256962    

Jazz

Thank you all for the kind words and support. I didn’t mean to hijack CS’s thread. CS, how goes it? When must you make decisions? How are you holding up? I know you said you didn’t want to go into a planning discussion… to which I can relate (scary as it is, but tiresome too).

I hope the center is holding. Can you breathe (or at least try to)?

Phalanx is a great word. If only our immune systems would oblige.


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?

June 3, 2013 at 8:44 pm  #1256995    

marisa93

CS, I am so very sorry for what you are going through. I just told Debra in her thread that Jim and I were discussing with the kids earlier just how special GRACE is to us and that means also some of the very special people such as yourself. You are close in my thoughts as your journey so closely mimics Mark’s at this point. It’s good to hear you are being very well cared for by your husband…love and (((hugs)))

Jazz, I am so, so sorry for your loss. Life can be so cruel and unfair! You are another special person here at GRACE and will be close in my thoughts…love and (((hugs))) to you as well

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

June 3, 2013 at 9:08 pm  #1256996    
JimC Forum Moderator
JimC Forum Moderator

CS and Jazz,

As is often the case, my better half has said exactly what is in my mind as well as hers. I am saddened and sorry for everything that each of you has had to endure and continue to struggle with. I have followed each of you in your journeys with cancer ever since you joined GRACE and have been humbled by the grace and strength and humor (for you, CS, “humour”) which each of you display on a daily basis, not to mention the generosity of spirit you have shown in your willingness to help fellow travelers walking similar paths. I could only hope to be as brave if I were faced with even a fraction of the difficulties you have faced. My thoughts are with each of you.

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

June 4, 2013 at 7:17 am  #1257001    

Sherry

Jazz, I’m so sorry for the loss of your father. I lost mine in November, so I can understand what you must be feeling right now.

Chebird, I’m sorry for the loss of your friend. That is such a difficult thing to go thru.

CS, I think of you daily and hope that the days are getting easier for you. You know we are all here for you as you have been for us.

As always, the 3 of you and all of our GRACE family are in my daily thoughts and prayers.


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.

June 4, 2013 at 8:05 pm  #1257006    

marisa93

Chebird, I am so very sorry for your loss as well…

Will be keeping you in my thoughts,
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

June 5, 2013 at 8:58 pm  #1257027    

laya d.

Holly – –

I’m so sorry to read about your friend. It’s all so devastating.

Sending you lots of love,
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 23, 2013 at 8:52 am  #1257469    

certain spring

So here we are, myself and my husband, having a quiet Sunday afternoon that seems all the more precious because we haven’t had one like it for what feels like weeks. I am not flat out on morphine and he is not running round in circles, but drawing peacefully. I have come back to GRACE, which I haven’t been well enough even to look at, and I am out of my pyjamas, which must be good even for a short time.
I have a big, visible tumour in my liver which makes it hard to walk, eat or do my trousers up. Watching it grow every day has been like living in one of the Alien films. The pain, terrible at first, is now rather too much under control – ie I don’t feel much but I’m not always lucid either. I also get nausea which is proving hard to control.
Meanwhile the primary site in the lung has been doing its usual thing – “Same old same old”, says the surgeon, who found the stent to be blocked, though not with cancer – so I am very breathless and uncomfortable. In a matter of weeks I have gone from regular swimming to finding it hard to walk on the flat. The liver makes breathing harder, as it presses on the diaphragm.
Even though I always knew something like this would happen, it has been a big shock, especially for my husband who suddenly finds himself having to act as carer. Which, I may say, he is doing amazingly well.
My oncologist has taken me off Tarceva and put me on compassionate use Afatinib, a nail-biting process that involved us going to the hospital every day for four successive days, only to be turned away because they hadn’t yet received it or because I had failed one of my liver function tests. Very frightening.
There are, surprisingly, relevant trials available, but the fear is that the sheer bulk of the tumour in my liver will kill me before they become possible. That is what I am expecting to happen, although I am hoping to be made more comfortable in the meantime. Love to all the regulars, and think of me please.


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.

June 23, 2013 at 9:08 am  #1257470    

gn21

This sounds horrible, and scary and very very shitty. So concerned for you. I have everything crossed that the afatinib creates some relief .

Gail

June 23, 2013 at 10:11 am  #1257471    
JimC Forum Moderator
JimC Forum Moderator

cs,

I am saddened to hear your latest, and as is often the case with cancer I feel so helpless. I wish I could do a search and find something to help you, but I know you would have found it already. Of course our thoughts are with you, and I’m sure you are being thought of all over the world not only by the regulars but also by many GRACE users you don’t even know and who never even post. We are all sending a tidal wave of support and love to you and your husband.

Jim


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

June 23, 2013 at 10:36 am  #1257472    

marisa93

CS,

It’s wonderful to hear that you and your husband are enjoying a precious, peaceful day together and I wish you many more!

At the same time, I am feeling very, very helpless right now after reading your update. I absolutely hate cancer and what it does to patients and family members alike!!!

I will hope right along with you that a trial will be possible! You know that I am all too familiar with what you are going through right now so I am also hoping, right there alongside you, that you be made more comfortable!

You are always in my thoughts and I know I speak for all of us who send our love and support to you and your wonderful husband!!!!

Lots of (((hugs))) to you both,
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

June 23, 2013 at 10:43 am  #1257476    
Dr West
Dr West

Yes, CS, I too an very saddened to learn of how difficult things are for you, even though I’m comforted that your husband is such an attentive caregiver and that you are sharing some good time together. For what it’s worth, you needn’t even suggest that people continue to think of you — it’s a community-wide pastime that reflects how deeply we all care for you.

Sometimes I think it’s amazing how much we can become invested in each other even when we’re spread all over the world and haven’t even met. But it happens.

Thinking of you,
Dr. West

June 23, 2013 at 11:47 am  #1257479    
catdander forum moderator
catdander forum moderator

Certain Spring, I’m saddened to know you are struggling so but admittedly glad to have word from you. It’s so very little and quite likely inconsequential but at every yoga practice I send to all Grace and especially my Londoner friend positive energy and hopes that tomorrow will be a better day. Please let your husband know he is loved by many at Grace for caring for our cs.

Happy for the good day.
Love and Peace,
from Janine

June 23, 2013 at 12:00 pm  #1257481    

delialolly1

Dearest cs

I hold you forever close to my heart, both as a remarkable and amazing. Woman and also as someone who gave warmth when I first landed here on GRACE in my own misery. Thank you again and may tomorrow be a better day.

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….

June 23, 2013 at 12:20 pm  #1257482    

Sherry

CS, thank you for updating us. I think of you every day and I’m so glad to hear from you but so very saddened to hear that your news isn’t better.

You will continue to be in my thoughts and prayers.


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.

June 23, 2013 at 12:28 pm  #1257484    

Jazz

Crying, but so happy to find an update from you, grim as it sounds. I do hope afatinib confers some relief. And I hope (for you and for everyone here) that death is not as close as it seems.

Am feeling like hopping a plane to London, just for the chance to serve you tea, or bring you something you’ve always wanted (besides new body parts or the money to purchase them, which sadly I, nor even Steve Jobs, could not provide). Now I am becoming “one of those” people who want to help but don’t know how.

As everyone has said, the love for you from those here and globally runs deep. Please hold on.

Big hugs, curses to the moon, wishes for tumor regression and ability to enroll in trials. Continued strength and saintliness to your husband. And more good days like today.

xoxo,
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?

June 23, 2013 at 1:40 pm  #1257491    

aunttootsie001

Hey CS! So sorry you have been having such a hard time! As the others have stated, Glad you feel well enough to give us an update! I had missed seeing your posts! I pray things will lighten up for you! You have been so very helpful every since I came to this site! As Dr. West said we all become close without ever even meeting one another. So we’re here for you Sweetie! Stay tough and know we’re all thinking only good thoughts of you and your Dear Husband! Lorrie from Ohio!

June 23, 2013 at 5:10 pm  #1257496    

cards7up

CS, I’ll be keeping you in my thoughts and prayers that afatinib shrinking that liver tumor.
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

June 23, 2013 at 7:54 pm  #1257499    

double trouble

CS, I’m sure I share this with the others… that throughout the day I check GRACE, and that over the last few weeks foremost in my mind has been the hope, but also the fear, that there would be an update from you. When I saw the words “Holding Your Nerve” this morning I instinctively logged off. It took me hours to come back and read your post, and more hours still until now, and I am struggling to respond in some rational way.

For those of us who know, I think we travel through time and space with a kind of “not today” mentality, and then when we are faced with something that we really knew was coming, we are still just jarred by it. Thrown completely off balance. As you said, “Even though I always knew something like this would happen, it has been a big shock…”

And our loved ones I think allow themselves to hope that maybe all of this really will go away. And then they are forced to confront their fears, and are called to step up and perform feats of great courage and strength, forcing back their pain lest we should see it and become more frightened and saddened that we are putting them through this.

None of this makes sense, and I don’t know but can only hope that those who have gone before and those who will follow are somehow restored by the transition, and indeed gather together, whole, all knowing, and at peace.

I am embarrassed that I ever thought that I knew what the liver pain was like for you, and I hope you will forgive my arrogance in suggesting what I thought would help. I cannot imagine watching the tumor grow and only finding relief upon being anesthetized beyond clarity.

I need to say to you that it is okay to let go, and that you will know when the time is right. Perhaps soon, perhaps not for a long time, but I have held the hands of two who have gone before us, and they knew. And those of us who have come to love you will carry on, and continue to be amazed and grateful that we were allowed to share some space with you and be

cont’d.

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