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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February 9, 2013 at 3:53 pm  #1253620    

double trouble

I’m sorry Gail. 6 weeks can be incredibly short. My condolences to all who were touched by this passing.
Debra

March 26, 2013 at 10:52 am  #1255156    

dwhang

Thank you for starting this great conversation. There is indeed so much life that goes on between diagnosis and the end. In my own personal experience, I feel that in many ways, life seems to stop between those two endpoints. But I have been trying to remind my wife, whose mother is terminally ill and declining rapidly with stage 4 NSCLC, that we need to cherish each moment we have with her. This whole experience has really taught me to treat each day as a gift and to live it to the fullest. It certainly puts my priorities in place. If anything, I hope that by living a joyous and fulfilling life, we can honor our loved ones.

March 26, 2013 at 11:38 am  #1255160    

laya d.

WHERE THE HECK HAVE I BEEN!!!!! I just saw this thread for the first time today. . .

All I can say is that I am even more in love with all of you after reading everything that you have written here than I thought possible. How brave and honest and true you all are! How raw and uninhibited! You amaze me!

cs: So happy about the MRI results and so sorry the whole ordeal stressed you out so much.

Jazz: I love Dr. Cambridge! See, it wasn’t so bad after all. . .and you’ll take on what needs to be taken on just as you always have. With great spirit and gusto! So, Beware Gophers!

Debra and Lorrie: I love you both. . .you know it. . .And, when the time comes a long long long time from now, morphine is your friend. It certainly was my Mother’s. . .and there was no air hunger. Just a peaceful rest until we were told that she had passed.

Sherry: Funny thing about weddings and wedding dresses. One of the things that instantly brings me to my knees these days is the fact that my Mom will not be there for my kids’ graduations, weddings, etc. Like my Mom, my eldest daughter is a total “girly-girl” – – and the two of them always watched the wedding shows together and commented on the dresses, etc. My mom always would say things like, “Well. . .at your wedding, we’re going to _______.” So, it just kills me!

Janine: Thank you for holding your nerve and for helping all of us hold our nerves along the way. You are an amazing woman!

Gail: I’m so very sorry about your friend. So very heartbreaking! But, selfishly, I celebrate your 4 years. So, hurrah to that!

dwhang & meanie11: I’m so sorry for what you both currently are going through. I wish you strength and peace. And I wish your MIL/Mom comfort beyond everything else.

Dr. West: As always, you are amazing and brilliant. Enough said…

Muwwwwwah!!! I 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.

March 26, 2013 at 1:27 pm  #1255168    
catdander forum moderator
catdander forum moderator

Right back at you Laya. You’re not the girly girl in your family? I would have guessed you were you’re so darn sweet to us. Thank you for painting a scene from your life I think it will keep in me as a part of you, your mom and daughter talking over those wild wedding shows…bitter but sweet.

You’re right about our women here all our people here. I have learned so much about my own husband’s moods and actions (he’s still the sweetest, calm presence he always was mind you) and because of these candid conversations I can pronounce him as sane as anyone.

xoxo

March 26, 2013 at 2:07 pm  #1255171    

laya d.

Nope. . . in “real-life” I’m pretty tom-boyish in attitude. . .My Mom and my eldest daughter have always desparately tried to make me more traditionally “girly”. . .I actually think that with age I am becoming a bit more “traditionally” girly! And, for what it’s worth, for the longest time my husband called me “Lawrence” as a pet name (mostly when I was getting on his nerves)…but I haven’t heard that in few years ;O) . . .

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.

March 26, 2013 at 10:21 pm  #1255192    

dwhang

Thank you Layla for the kind thoughts. I find your kind thoughts and positive energy to be quite contagious. Everyone on this forum is truly amazing, and there is strength in not traveling this path alone. “Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken.” — Ecclesiastes 4:12

March 26, 2013 at 10:21 pm  #1255193    

dwhang

Oops, I realize I keep saying Layla. Sorry LAYA!

March 27, 2013 at 1:32 am  #1255196    

Jazz

Wow, how did I not subscribe to this topic earlier?

We’re all in a nerve-wracking stages right now, aren’t we?

Best to all,

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 28, 2013 at 1:56 am  #1256797    

certain spring

This seems a good place to take up residence, if no one minds. Thank you to those who have asked after me.
While we were busy with my airway and my stent, the cancer was busy elsewhere. The PET-CT scan report was so bad it was almost funny. I shall not go into the gory details but I have a tumour in my liver and various other bits and pieces. Nothing in the brain, which has been my greatest fear, or at the primary site in the lung.
Although I always knew this was coming, it has been hard to grasp how quickly the cancer has escalated during a period when I was generally, apart from the stent kerfuffle, feeling very well. No one could call this progression “subtle”. The tiger is out of the kitchen and prowling all over the house. The question is whether we can throw something in his direction to pacify him for a little while longer.
I have to say that everyone has been great. My oncologist, with whom I have had difficulties in the past, has been humane and open-minded, ready to engage with other specialists where it seems useful, and being plain with me about the things I need to know. I’ve been fortunate to have advice and suggestions from a number of clever and compassionate people in different countries, some of whom I’ve never even met. It’s very gratifying and motivating in a situation where the bigger risk is not cancer but despair.
There is no “plan” yet , and I am wary of the word in the context of a disease which is by definition uncontrollable, and where the best-laid plans get overtaken by events. Barely a week after my scan results I started to get pain in my right side and shoulder which I at first dismissed as psychosomatic (nothing to make you feel ill like knowing you’ve got a tumour in your liver) but which is, unfortunately, all too real. So we have spent a miserable weekend trying to get it under control. It seems that this is “capsule” pain from the liver or pressure on the diaphragm. Thank God for opiates and steroids, is all I can say.


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 28, 2013 at 5:46 am  #1256800    
JimC Forum Moderator
JimC Forum Moderator

cs,

I’ve read your post several times, trying to take it all in and come up with something to say that you don’t already know (unlikely!) or doesn’t sound ridiculous. It all comes down to the fact that this is an awful disease, and I am saddened that you are at this point. I hope that your pain can be controlled soon, because constant pain just makes everything worse. I also hope that your liver biopsy will reveal a new mutation which can be targeted.

I hold my GRACE family near to my heart, and you have been a prominent member of that family for the past three years. My thoughts are with you, sending you all the positive energy I can as you deal with this latest set of challenges.

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

May 28, 2013 at 5:59 am  #1256801    

marisa93

CS,

I am so, so, very sorry to hear of your progression. Jim just shared this with me as I came back home from taking my daughter to school. It brought many flashbacks for me as I think you know. I hope the meds are at least giving you some control over your pain in what feels like an uncontrollable situation.

I wish I knew why some of us are dealt such a miserable hand in this game of life…it’s just not fair! I am at a loss for more words….

Lots of love and (((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

May 28, 2013 at 6:10 am  #1256802    

double trouble

As soon as I saw the title I knew this was going to be your update. And as much as I have pestered you, I had trouble opening the thread.

I don’t know that I can say anything that will make you feel better. I can only let you know that I understand the feeling that the “tiger is out of the kitchen” and how I liken it to first finding out my original diagnosis. The what if’s and the how long’s and the ups and downs and the speculations about how bad will it be. I only had a brush with pneumonia and I was spinning so wildly I couldn’t think, so I can only imagine. I’m hoping once you have the biopsy behind you and some sort of a plan you will be able to put thoughts together in a way that make you feel some sense of control again.

I do have experience with liver biopsies. They are more frightening than they are difficult. They got me very relaxed in a quiet, even lowly lit procedure room. The feeling of anesthesia washing over your side (and inside) is actually welcome if you have been experiencing the side, back and shoulder pain you described. Those areas disappear into a wonderful numbness.

They used imaging to guide the biopsy punch. And it is a punch. More like a child shooting you with a harmless popgun in the side. The sound is the most startling thing. There is no pain. Afterwards they made a roll of towels and then I was instructed to lie on the biopsy side on the towel roll to apply pressure, for about an hour. I did request and was given some mild pain medication, but the discomfort was short lived.

Family was allowed in at that time. If I remember correctly, I think I was able to resume regular diet and activity right away.

That towel roll trick can help ease the capsule pain when you’re at home and it starts up. With liver damage comes a concern about risk/benefit of pain meds, especially over the counter. You will probably want to avoid tylenol (acetaminophen) and ibuprofen can be a little tough on the GI tract.

continued…

May 28, 2013 at 6:14 am  #1256803    

double trouble

i’m sure they will advise you. And with the level of pain control you’re on you may not need any of that. Another tip for the capsule pain… it really does help to get off your feet for a while, and lay on the side that hurts. It works for me anyway.

I can’t alleviate your fears and I won’t tell you everything will be all right. I will say that I join the others in “shaking our fists at the universe” and I hope you fill your head with as much knowledge as you need to help you feel just a little bit disconnected and a little bit more in control. That part I understand.

With so much love and respect,
Debra

May 28, 2013 at 6:53 am  #1256805    

certain spring

Thanks to all – I found it hard to write about this but am glad I did.
Lisa and Jim – I am so glad you have found happiness together despite your individual griefs. My husband is being amazing – sweet and steadfast – but is very distressed, though he rarely shows it to me. The one thing guaranteed to make me cry is the thought of causing such turbulence in his life now, and of his loneliness afterwards. But he is a great survivor, and I hope he will eventually find solace and happiness with someone else – he is young enough and resilient enough for that.
Debra, thank you for exactly what I need – a bit of detail! Everyone has been a bit vague about the procedure which led me to think it must be particularly grim … I have my cousin (a professor of medicine) on hand to see fair play.


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 28, 2013 at 7:10 am  #1256806    

marisa93

CS,

I know how hard it must have been to write that but I am also glad you did! Thank you so much for your support of Jim and I :) We are constantly amazed and in awe of the happiness we have found together and know that Mark and Liz would want this for us. I admit that I struggled some in the beginning with whether or not I should be happy with someone else. But I know that Mark felt about me just as you do about your husband and he wanted me to be happy again. Please give our best to your husband as I know he needs the support also. We are keeping you both close in our 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

May 28, 2013 at 8:39 am  #1256810    
Dr West
Dr West

CS,

Along with so many here, I’m saddened even if not shocked by your latest news, given your concerns about how you were feeling in recent weeks. I wish I had new, insightful answers, but of course you have already armed yourself with a great team that includes both professional and personal support. I’m glad for that.

At this point, I’m just one more in your collection of your long-time fans, thinking of you and hoping for the best for you and those so deeply invested in you.

-Dr. West

May 28, 2013 at 9:22 am  #1256811    

Sherry

CS, as the others have said, I am sitting here trying to comprehend what you just wrote, with tears flowing for you and for all of us that have to face this unfair fight. I wish there were some words that would make it better for you but words are meaningless.

So until I can think of something to say that isn’t silly, as always, you will continue to be in my thoughts and prayers. Your willingness to constantly share your story and to give of yourself is always so inspiring, and I thank you for that.


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.

May 28, 2013 at 9:51 am  #1256812    

double trouble

cs, with my biopsies they weren’t trying to get a sample of a specific area, or lesion, just a general sample of tissue. I don’t know how much difference that might make.I was positioned on my back. I will say that they take things slowly, and they are very careful before and after. I guess one could perceive that as a “grim” environment. I was just grateful for the professionalism. All procedures carry some risk, and this is one that I would not want to be rushed through. But in terms of impact on my body, it was a breeze both times. I’m just sorry you’re in pain, I’m guessing from your liver being enlarged (hepatomegaly). It is amazing how much the pain can migrate to back and shoulders. I’m glad they’re giving you the good stuff.
Debra

May 28, 2013 at 10:44 am  #1256814    

gn21

Oh CS

Like others I wish that there was something I could do or so.

You do seem to be holding your nerve in the face of such crappy stuff. Your concern and appreciation of your husband is lovely to read.

Your writing is descriptive and wry, with that lovely pragmatism that we know of you.

We know it’s not over til the fat lady sings ( is it still ok to to say that in tis world of PC) and I have my fingers and toes crossed that you cn get the tiger back in the kitchen at least.

One day at a time. Please kep us posted.

Hugs through cyberspace.

Gail

May 28, 2013 at 12:12 pm  #1256816    

delialolly1

Holding you in my thoughts and prayers cs.


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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