Luke's dad

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March 12, 2013 at 7:28 am  #1254662    

double trouble

Oh, Luke. If I looked up and saw my son walking in to join me at one of my appointments I would be ecstatic. You do far more than you know just by being there.

Debra

March 12, 2013 at 1:30 pm  #1254668    

Jazz

Dear Luke,

I am deeply moved by the feelings you’ve expressed so eloquently. I’m sorry that all I can offer is a virtual hug and to let you know that what you expressed are what we all feel at one time or another, if not continuously. As a long-time Stage 4 patient myself, I thought I could provide more wisdom and guidance for my father, who was diagnosed (stage 4 LC) last year. Yet I feel so helpless, like I’ve not been any more help than someone who knows nothing about the disease. I want to say exactly what you’ve just written. I’ve even known physicians who have been unable to do any more for their own parents than you or I could for our parents.

It’s difficult to feel like we’re doing enough or the right things, but I imagine your father is grateful for a son like you, glad that he’s not going it completely alone. I hope the trial gives him more quality of life. And I hope you (and all of us here who feel as you do) find a way to alleviate the emotional discomfort and find peace.

Wishing you and your Dad all the best,

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?

March 12, 2013 at 1:41 pm  #1254670    

laya d.

Oh Luke. . .you just wrote words that are inside of me. I have lived the scene you’ve just described countless times. The helplessness – – which at times led to feelings of hopelessness – – is the worst. I am so sorry for what you and your family are going through. I hate what cancer has done to our families – – how it’s changed the dynamics and, in my case, stole my Mom at 61. But, please don’t lose hope. Keep focused on the present and your Dad’s upcoming trial. I am wishing/hoping/praying for a dramatic response for him – – heck, I’ll even take a very prolonged period of stability.

I am keeping you all very close,
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 19, 2013 at 6:54 am  #1254907    

Luke

Dear Dr west, Deb, Jazz, Laya

Very sorry for my outburst, and of course thank you all for your very soothing words. Having composed myself, I now feel recharged to walk what I hope to be a very long road with my Dad.

I will provide updates as we move forward on the Novartis trial.


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

March 19, 2013 at 7:18 am  #1254910    

Sherry

Luke, please don’t ever apologize here for expressing your feelings. Everyone understands what you are going thru and you absolutely need to vent in a safe place.

I lost my dad in November of 2012 to this disease. I remember the same feelings of watching my dad – my hero – become a frail, sick and scared man. He seemed so small somehow. However, I can assure you that taking care of him in his last days is something I will cherish forever. Although a piece of my heart left with him, I am forever grateful for knowing that he knew how much he was loved in the end.

You are a wonderful son and a testament to what a great man your dad must be.


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.

March 21, 2013 at 7:46 am  #1254998    

Luke

So we are into day 2 of the Novartis trial (Phase 1b, whatever that means). One significant side effect is vision distortion. Terrain appears as ‘wavy’, certain sections of vision appear grainy or discoloured. No other side effects reported. We have been informed we are among the first lung cancer patients in the world on this trial. Most other trial participants are melanoma and colorectal cancer patients.

Meanwhile, a new baseline brain scan was performed. No evidence of disease in the brain per last scan.


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

March 21, 2013 at 5:04 pm  #1255005    

marisa93

Luke,

That’s great news abot your dad’s scan. It’s quite something to know you are some of the first to further research of LC tx’s. Best wishes for good results w/this trial!

Don’t ever feel you need to apologize for venting here. That’s the beauty of this place. We all have/had the same thoughts and feelings so we are here for support. It is extremely hard to watch someone you love fight this unforgiving disease so vent away here anytime you need to. You are a wonderful, supportive son and I’m sure your dad is glad to have you by his side.

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

March 21, 2013 at 6:51 pm  #1255012    
Dr West
Dr West

That vision symptom sounds somewhat similar to what people often describe on crizotinib. Though now something very expected and known to not be worrisome, it was initial a concern for possibly being a symptom of brain metastases until proven otherwise.

So at least there’s some precedent for similar symptoms with some of these targeted therapies.

Good luck.

-Dr. West

March 22, 2013 at 3:17 pm  #1255044    

certain spring

Hi Luke – I have just been reading Dr Riely’s new post, and was thinking you might find his views on BRAF mutations in NSCLC encouraging:

http://cancergrace.org/lung/2013/03/22/riely-most-promising-targeted-rx-for-lc/

As for the feelings of powerlessness, I strongly agree with everyone who has said that you are helping your father just by being there. The “saviour” instinct is very powerful but no one, especially your father, expects you to work miracles. It is your love and loyalty that count.


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.

March 23, 2013 at 2:55 am  #1255049    

Luke

It is great to hear from you again CS; I have missed you!


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

April 19, 2013 at 1:57 am  #1255772    

Luke

Dear all

As part of the LGX818+MEK162 clinical trial, we recently had a review to assess the response. The scan revealed no progression (but no tumour reduction either). Given a finding of stable disease, we were given the option, and have decided, to continue with the trial.

To be honest, I am somewhat disappointed as I was hoping for a more dramatic response, but I suppose I really should count my blessings.

Separately, my uncle was diagnosed two days ago with peretonial carcinomatosis with an appendix primary suspected. This has come as a shock to us, and we are still trying to make sense of it all, but otherwise, we are managing.

I hope everyone’s doing okay.


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

April 19, 2013 at 4:55 am  #1255775    
JimC Forum Moderator
JimC Forum Moderator

Luke,

Stable is an excellent result after two prior lines of treatment, and is definitely something to feel good about. It may help to read Dr. West’s post on stable disease here: http://cancergrace.org/cancer-101/2007/01/13/stable-disease-and-clinical-benefit/

I’m very sorry to hear of your uncle’s diagnosis. My thoughts are with you and your family, with hopes for a good treatment plan for him.

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

April 19, 2013 at 6:45 am  #1255776    

certain spring

Couldn’t agree more with Jim – hurrah for stable. How is your father finding the trial drugs?
Sorry to hear about your uncle. As so often in life, too much going on at once.


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.

April 19, 2013 at 9:10 am  #1255782    
Dr West
Dr West

Just wanted to add to that sentiment re: your dad — stable disease is perfectly welcome if the treatment is well tolerated, especially if a patient has already received a few lines of prior therapy.

I’m sorry to hear about your uncle’s new finding. That sounds like a very unfortunate diagnosis.

-Dr. West

April 19, 2013 at 11:45 am  #1255795    

Luke

CS: The side effects are significantly more manageable than those of chemotherapy. Thank you for asking.

Incidentally, when told of the finding of stable disease, my dad made an interesting analogy: he likened his cancer to a tenant staying rent free in his house (body). He said that as long as the tenant doesn’t usurp him as landlord, eviction while preferred isn’t strictly necessary and he is happy to live alongside with it.

I wish the cancer can see the wisdom in this revelation. What point is there with its indiscriminate spread if it eventually compromises the host? If only it knew that its very existence is ultimately dependent on its host’s survival.

And they say cancer cells are ‘smart’.


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

April 19, 2013 at 1:17 pm  #1255797    

double trouble

Cancer as symbiont. Interesting.
Debra

April 19, 2013 at 1:52 pm  #1255800    
Dr West
Dr West

Cancer cells are smart, adaptable, but short-sighted in that regard.

-Dr. West

April 20, 2013 at 3:57 am  #1255809    

certain spring

Excellent analogy about the tenant in the house. Thanks to your dad. I have thought in terms of peaceful coexistence, but this is more useful. A tenant who makes a bit of a mess….
Interestingly I asked the same question that you pose of a research scientist earlier this week. What is the evolutionary endgame for the cancer? It cannot spread, like a virus. In destroying the host, it destroys itself. I wondered if it evolved as a Malthusian way of controlling population spread. He said not – that it was just random chromosomal events. Hard to believe when you contemplate the energy and ingenuity of the cell activity in creating new pathways of resistance and so on.


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.

April 20, 2013 at 8:42 am  #1255815    
Dr West
Dr West

I don’t think of it that way. Well-behaved normal cells are a product of extreme order, everything working well. Cancer is the product of randomness and entropy entering the system — it’s chaos added to the unnaturally precise order of well-functioning cells. When you have cell division billions or trillions of times in a single person over time, and each cell division is an opportunity for mutational errors, you get an accumulation of them over time, even with the many checks and balances of the physiologic system trying to prevent and correct chromosomal errors. A well-functioning cell is an extremely deliberately ordered deviation from the natural chaotic state, and cancer represents a regression to chaos. Like my desk, you can’t keep entropy from creeping into the system over time — though it’s not a product of an elegant, grand plan.

-Dr. West

April 20, 2013 at 10:33 pm  #1255833    

Luke

Perhaps this could be a new research avenue: drugs that will ‘coach’ or ‘re-educate’ cancer cells to understand that for its own survival, it needs to exercise restraint.

Surely there are parasites out there that already understand this logic.


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

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