Holding Your Nerve

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February 7, 2013 at 9:11 am  #1253514    

certain spring

I’m sure it will be.
Here is an example of what I mean by “holding your nerve” – and also an example of how I fail to take my own advice ….
On Monday I had an MRI, which I hate (well, obviously nobody likes them). My cousin came to meet me and buy me a sandwich, which made it nicer. Usually I have some kind of imaging (MRI or CT) done a few weeks before I see the oncologist, and in this case my appointment was for the end of February. On Tuesday the clinic rang up to say could I come in on Thursday (today), ie three weeks early. To say that alarm bells went off would be an understatement. First, no one from the lung clinic never rings up: communication is by letter, and slow. Second, I’d had a stiff neck and been a bit wobbly for the last few days – bit forgetful, the odd headache – and it’s amazing how ill you can suddenly feel when you think there might be something wrong.
I rang my husband, who pointed out that it could be an administrative convenience, and I tried to get on with my work. But the fear was terrible, as anyone who’s had brain mets will know. It took me right back to the beginning, and it took a real effort of will (and several glasses of wine) to calm down.
Sure enough, it turned out that next week’s clinic had been cancelled and the appointments rearranged accordingly. There is apparently nothing wrong with my MRI. But it takes a lot out of you.


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.

February 7, 2013 at 10:05 am  #1253521    

Sherry

That’s wonderful news! I do understand how sick you can become when you’re sure there’s something wrong. Miraculous how much better you feel when you get good news!


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.

February 7, 2013 at 10:47 am  #1253524    

aunttootsie001

Omy! That was unwanted Stress! But I’m glad you were able to calm yourself with a Fine Wine! I wish I could toast you! So Happy For your good News!

February 7, 2013 at 11:25 am  #1253527    
catdander forum moderator
catdander forum moderator

Great to hear about the results. Hate to hear about what has to be gone through to get them.
But certainly worth holding your nerve for.

It’s interesting and so unfortunate how the body feels all sorts of aches and pains when you’re in a waiting to get results period. D has the same thing happen.

February 7, 2013 at 1:45 pm  #1253536    

double trouble

Nothing wrong with your MRI!!!!!!! Yay!

Debra

February 7, 2013 at 2:57 pm  #1253541    

gn21

How terribly frightening! I remember when going through all the initial testing I told myself it will all be ok as long as the doctor doesn’t ring me (therefore can’t be anything significant). And then she rang!

I guess we tend to make our cancer the centre of everything. We forget about the normal administrative nuisances in life.

But what a fantastic outcome. A clear MRI, and you didn’t have to wait as long to get the result.

Holding the nerve……..

Gail

February 7, 2013 at 8:39 pm  #1253554    
Dr West
Dr West

Very good to hear. That’s part of why I try to arrange only a short interval between someone’s scans and our discussion of the result. I would really hate to call someone and ask them to come in earlier, forcing us to have a conversation over the phone that would be better conducted in person, or leaving them to ruminate about the potentially terrible findings that require an earlier visit.

I’m glad it was just a little practical hiccup.

-Dr. West

February 7, 2013 at 11:43 pm  #1253560    

Jazz

Wow, where was I when this discussion began? Oh right, discussing my last PET scan with my oncologist, who said, “I think it’s time to discuss end-of-life issues”, and handed me the bright pink POLST form. I’m sorry to ambush this forum with an update, but it’s so apropos. I feel like we’re seriously all in the twisted version of Noah’s ark, floating on the big flood…

CS: You know my agony towards stairs and the two-story house we bought in April of last year. Thousands of words of anger and bitterness I wrote towards the house and its location, although it was the love of my husband’s life! Yes, we discussed adding a shower to the downstairs powder room, and converting the den (which is now the formal dining room) into possibly a room – the one hospice might put the hospital bed in when it’s time. He assured me we could get a Stairlift – the chair-escalator that goes up the stairs. I reminded him of all the admonishments to buy a single-story home from oncologists and nurses alike. I feel your pain. But your husband sounds infinitely more sympathetic towards your cause. With the latest news, my husband’s actually humoring me and allowing some of the things I love into the house… The laundry is another matter—

More importantly, Hurrah for a clear MRI!! I absolutely concur with the morphine. Thank you Universe for it! My pain is controlled at last!

Janine, thanks for starting this thread. I’m now deep in progression, having lit up like Las Vegas on my last PET. I’m off the Denver trial and need to start chemo next week if possible, and Xgeva if my insurance would approve it. I’ll elaborate on the afatinib thread, but I’ve got new mets, and the Clovis trial I’d hoped would be ready has not reached MTD. The PD-1 trial slots are going fast at UCLA but I can’t wait to get a biopsy, have it tested, etc. I see a new oncologist (in So.Cal) tomorrow to get the ball rolling. Desperately trying to hold my nerve…


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?

February 8, 2013 at 12:02 am  #1253561    

gn21

Jazz, as some of us have posted on your blog on hearing your news, we are devastated. Unfortunately that doesn’t change the facts or help any, but now is certainly the time for holding your nerve! I’m not sure what a POLST form is, and whilst the color of it may be cheerful I suspect the content isn’t. And I’m not sure how you or any one can hold your nerve against this latest news. As mentioned you and I are sharing similar therapies, but I don’t glow in the dark (yet!) and am holding out for the Clovis trial, due in Australia shortly. I will find out at the end of the month if the alimta is holding things at bay in the meantime.

I must admit I don’t quite understand your story of houses and the things you love. Did hubby insist in the two storey house against your wishes? And why wouldn’t you be able to have the things you love around you?

I suspect we all live in a illusion to some extent. We know we have terminal cancer, we know we are going to do, but I suspect we know it intellectually rather than emotionally. To be told, however kindly, that there is no more hope must be more that you can bear.

Gail

February 8, 2013 at 12:17 am  #1253563    

Jazz

I forgot to mention that I rode an electric scooter around a big box home improvement store today. I resisted but my husband made me do it, and he was right. I had trouble navigating the airports last Wednesday, and those stores are the equivalent amount of walking. Air hunger.

Also, I found this presentation on TED.com – http://www.ted.com/talks/peter_saul_let_s_talk_about_dying.html


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?

February 8, 2013 at 12:54 am  #1253564    

certain spring

Dear Jazz, I am so glad to hear from you. This thread should be a home for you. It is time you had somewhere where no one is going to tell you off for talking about your fears. We’re all here to hang onto. You must feel sick with fear, but you are not going to disappear in a puff of smoke. Your body is incredibly resilient and has kept you going all this time – it will keep you going a while longer. Thank goodness for the morphine – it will make life easier and it is so reassuring to know that it is there when you need it.
Just make sure you do some nice things in amongst all the medical stuff. And don’t worry about the house. As we were discussing earlier in the thread, things may not turn out in the way you fear. Much love.


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.

February 8, 2013 at 12:58 am  #1253565    

Jazz

Gail,
Dr. Camidge (Denver onc) was quite a bit more reassuring than my local doc, for which I could just hug and kiss him! If my PET was alarming, he presented a very calm and gentle assessment that yes, my bone mets had grown and there were new ones. But the things to be concerned about were “the soft, squishy parts”, and although I now had a met on my adrenal gland (“small but active”, as his Fellow put it), things were otherwise okay. He said, “No one’s ever died of a broken bone”, which may or may not be true, but I think his MO is to preserve Hope, and he’s pretty good at it. Since the Clovis trial isn’t ready, and may not be for a few months yet, he recommended chemo plus Tarceva (actually a rerun of Gemcitabine-Carboplatin + Tarceva) to herd the sheep back into the barn until I could get on another trial. He also emailed the trial doc at UCLA as an introduction. The upside of the adrenal gland met is that it can be biopsied for clinical trials! How about that for a silver lining…

We discussed the lack of data re: repetition of a doublet this far down. He wasn’t opposed and suggested it as the aggressive option, which could be de-escalated if issues arose. He said I could postpone the end-of-life stuff for some other time. I protested that my husband was going to buy me new stuff because of my imminent death! He too, was confused.

I don’t have the energy to assert myself as regards my things. They were boxed up in our last move and stacked in the garage or the storage unit. The hubby resists bringing things down to be unpacked with the reasoning that there’s no place for any of it. This always ends in altercation so I just give up. After the POLST form (Physician Orders for Life-Sustaining Tx) visit, I expressed sadness at not getting to enjoy my things a bit before I die. He felt guilty and has brought some things down… I’ll post pictures when I put them up. People wonder why there aren’t shelves of books or art on the walls or clocks.


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?

February 8, 2013 at 1:04 am  #1253567    

Jazz

CS, Much love to you. May your new home be filled with all the things you cherish! If I remain standing after these next rip tides, I am painting the walls and going to Europe (stomps foot)! I am planting what I want and ants be damned! Bloody gophers too ;-)

BTW, Gail – Congrats on 4 years! Do go and spend more money, and travel so we can live vicariously through you

xoxo 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?

February 8, 2013 at 1:16 am  #1253569    

certain spring

That’s funny actually as I am famous for getting rid of everything (a trait I’ve inherited from my father), and because the house is small, I’ve had a major attack of the throw-outs recently. The main thing I cherish is my husband (though not his socks, how is it that men have so many socks?)
I think the gophers have been planted there to distract you. If you listen at night, they are singing in a Disney-style chorus to send you to sleep.
Just tell your husband to bring your books and pictures down or we will all come after him!
I do like Dr Camidge’s attitude. It takes a Brit….


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.

February 8, 2013 at 12:24 pm  #1253580    

double trouble

Jazz, CS and Gail… I love you guys!!!!!
Debra

February 8, 2013 at 12:55 pm  #1253583    
catdander forum moderator
catdander forum moderator

Funny, I almost did the same Debra.
So why not and include you…
I love you guys!

February 8, 2013 at 12:58 pm  #1253584    

double trouble

Ditto Janine. I hope some go without saying.

February 8, 2013 at 12:59 pm  #1253585    
catdander forum moderator
catdander forum moderator

yes
and
Sherry, Lorrie, Jack West just to name those on this thread, so far.

February 9, 2013 at 1:27 am  #1253615    

gn21

This is a great thread and it’s nice to have somewhere to talk about our fears and irritations. I’m feeling good about our level of communication and honesty hear.

Cancer sure sucks! But so do lots of other things. A close friend died today, not of cancer, but of an infection that went to valves in his heart and subsequently caused lots of mini strokes. 6 weeks was all he had. And none of the time we have had to do the holidays, the planning, the communicating etc etc. I am sure my friend wold have loved the time we have been granted.

Gail

February 9, 2013 at 8:39 am  #1253617    

Sherry

Jazz, I’m glad for you that your new doctor gives you much more reassurance. You’re facing such a scary time and I’m glad he is there for you.

Gail, I am sorry for the loss of your friend. I lost a friend quite unexpectedly this summer to an aneurysm. Actually, it was because of what happened to her that made me go to the ER for the horrible headache that led to my diagnosis of a brain met. I think she was my angel, although it breaks my heart to see what her family is going thru and how much they miss her.

This thread is probably one of the best I’ve ever participated in on GRACE. It is so hard to be honest about how we really feel. We try to be strong for our loved ones and strong for ourselves, but sometimes we need to just say what’s really on our minds. Thank you all for being here.

And, I have to say that I love you all, too. I was trying to explain to my husband last night how I felt when I read Jazz’s news, and he can’t quite comprehend how I can care so much about people I’ve never met. But I know that every one of you understands.


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.

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