Luke's dad - 1248065

luke
Posts:101

Hi all

I just wanted to provide an update on my dad's condition. We recently crossed the 'one-year since diagnosis' milestone. A recent scan revealed that all of the original sites have either resolved or displayed interval reduction. That said, two new suspicious/inconclusive sites have popped up in the spine - the oncologist has decided to 'wait and see' by continuing with the current Alimta maintenance.

Performance-wise, he's generally well, save for the fatigue which tends to aggravate during the period immediately following each infusion.

So this marks our being on maintenance for 9 months or so now. Here's hoping we can have a lasting effect with Alimta.

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Reply # - September 16, 2012, 07:31 AM

cards7up
Posts: 635

Congrats to you Dad! Here's to many more great scans and lasting with alimta.
Take care, Judy

Reply # - September 18, 2012, 06:52 AM

luke
Posts: 101

Thanks all!

Jazz: Yes, the BRAF was identified when we were testing for EGFR and ALK (both -ve). We also tested for ROS1 which was also -ve.

The current plan, following consultation with the oncologist, is to keep the theoretical BRAF inhibitor option in the pocket, as it were, and to pursue it only when all conventional second and subsequent lines have been exhausted.

Reply # - October 30, 2012, 06:37 AM

luke
Posts: 101

I am sad to report that my dad today presented with symptoms of right hemianopsia. Our onco suspects progression and has scheduled a brain MRI.

The whole family is worried sick. If anyone has any insight on such a development, I would be grateful if you could share them with me...

Reply # - October 30, 2012, 07:19 AM

Dr West
Posts: 4735

I'm very sorry to hear about this development. To clarify for others, hemianopsia is the loss of half of the field of vision. The key here will be the findings on brain imaging. The treatment is really guided by those findings.

Good luck.

-Dr. West

Reply # - November 1, 2012, 07:27 AM

luke
Posts: 101

Sometimes I just don't understand what fate and destiny truly holds.

After tons of research and having convinced myself that this must be progression, the brain MRI revealed yet further shrinkage to the only brain tumor to 2-3mm.

It is like finding hope in the darkest of places, when all faith is lost. Such is the irony of life.

Reply # - November 1, 2012, 11:37 AM

certain spring
Posts: 762

I know. These ups and downs are bewildering.
I am glad there's no progression in the brain, but am sorry for about these vision problems which must be distressing for your father. I hope something can be done to correct or assist his vision.

Reply # - November 1, 2012, 04:26 PM

Dr West
Posts: 4735

Well, even when the scans don't give an explanation, they offer the reassurance that there isn't something new and bad happening.

I hope he's doing better soon.

-Dr. West

Reply # - February 19, 2013, 01:29 AM

luke
Posts: 101

As my dad has been on Alimta maintenance for more than a year now, he was recently scheduled for a surveillance PETCT scan and I just wanted to share the results. Comparisons were made to a July 2012 scan.

The good news:

- The brain tumour has fully resolved.

- All other metastatic sites in the neck and spine have either fully or partially resolved.

The not-so-good news

- The primary tumour in the lung has increased in metabolic activity (4.2--->5.3)

- There is a new metastatic lesion in the spine (6.4)

I am not sure how I should be reacting to this yet. Mixed feelings for a mixed response, I suppose. I wonder if this means that it's time to ditch Alimta and move on to something else.

Reply # - February 19, 2013, 11:28 AM

catdander
Posts:

Hi Luke. I wish all the info on your dad was a good as the first part. So happy to hear the brain mets are no longer visible.
My unprofessional memory of what has been said is a small change in SUV such as in his primary tumor with no visible change is not reason enough to change treatments. Usually you'd want clear progression and technically a small change in suv with no clear measurable growth isn't enough. My husband had that just a few months into gemzar but went back to normal by the next scan.

I will contact a doctor for input on your questions. You should hear back within the day.

there's much written about pet scans here is a link to get you started if you interested and there are links at the bottom of the post for further reading, http://cancergrace.org/cancer-101/2010/09/14/cancer-101-faq-primer-on-p…

Much luck,
Janine

Reply # - February 19, 2013, 02:23 PM

carrigallen
Posts: 194

I agree with Janine. I don't like to change a treatment plan unless there is convincing signs of progression. It helps to interpret the scan in clinical context.

The primary tumor SUVmax change from 4.2 to 5.4 could be oscillation between tests. The glucose tracer has a ~20% variation, based on time of day, timing of food, different operators, and different machines.

I would be mindful of the new spine lesion of 6.4, but it is difficult to interpret without additional info. If there is bone destruction or enhancement on CT that matches the area on PET, this could be consistent with a new tumor. Similiar, if he has new pain at the same level as the lesion, this could fit as well. Depending on the context, a reasonable option could be to do additional imaging, like a dedicated CT or MRI with contrast, in a specified time interval, of say a month or two.

Bottom line: stay hopeful. Might not be time to ditch the treatment yet.

Reply # - March 9, 2013, 08:33 AM

luke
Posts: 101

We are at the crossroads between second line Taxotere and a clinical trial option. Because my dad has a BRAF mutation, we have been offered the opportunity to participate in the Novartis LGX818/MEK162 trial.

We have decided to opt for the Novartis trial as his performance status is presently good and we don't want to 'miss the boat'.

I was just wondering if the doctors or members here have any insight on this Novartis trial, e.g. preliminary or anecdotal results on this trial.

Reply # - March 9, 2013, 09:43 AM

laya d.
Posts: 714

Hi Luke. . .

I don't have an answer to your question - - we'll have to wait for the docs - - but just wanted to wish your Dad all the luck in the world with the trial. . .I hope he sees a wonderful response with very few side-effects. Please keep us posted.

Laya

Reply # - March 9, 2013, 07:53 PM

Dr West
Posts: 4735

I don't have any insight here -- sorry. Just no info either way. I think that's not likely to be one where there's much info to be had yet.

Good luck.

-Dr. West

Reply # - March 9, 2013, 08:38 PM

luke
Posts: 101

Hey Laya, Dr. West

Thanks for the well wishes. I will provide updates as we move down this path.

Reply # - March 12, 2013, 06:08 AM

luke
Posts: 101

We had a regular consultation with our oncologist today. I arrived at the waiting lounge to see my Mum and Dad patiently waiting for their turn. I don't know why but I was suddenly overcome by an overwhelming sense of sadness. It was as if they were waiting for a miracle that will never come. I remember two years ago when my dad was jovial, strong and in the pink of his health. Today, all I saw was a man who is but a shadow of his former self sitting trepidly on a chair and having resigned to his fate. And I felt absolutely wretched and enraged with my total and complete incompetence in turning things around. I am sorry for ranting but I wish I didn't feel anymore.

Reply # - March 12, 2013, 06:52 AM

Dr West
Posts: 4735

Luke,

Cancer is very humbling because we realize that it can overpower our best efforts. I hope you truly understand that the problems he faces aren't due to anyone's shortcoming, specifically yours. I suspect you know that in your head, though that might not make any of this much easier. If it does help, I can assure you that your feelings are appropriate, understandable, and shared by most people who have been touched by cancer. I'm sorry that you have to be one of them.

-Dr. West

Reply # - March 12, 2013, 07:28 AM

double trouble
Posts: 573

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

Reply # - March 12, 2013, 01:30 PM

Jazz
Posts: 279

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

Reply # - March 12, 2013, 01:41 PM

laya d.
Posts: 714

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

Reply # - March 19, 2013, 06:54 AM

luke
Posts: 101

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.

Reply # - March 19, 2013, 07:18 AM

sherrys
Posts: 212

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.

Reply # - March 21, 2013, 07:46 AM

luke
Posts: 101

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.

Reply # - March 21, 2013, 05:04 PM

marisa93
Posts: 215

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

Reply # - March 21, 2013, 06:51 PM

Dr West
Posts: 4735

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

Reply # - March 22, 2013, 03:17 PM

certain spring
Posts: 762

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…
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.

Reply # - April 19, 2013, 01:57 AM

luke
Posts: 101

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.

Reply # - April 19, 2013, 04:55 AM

JimC
Posts: 2753

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-clinica…

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

Reply # - April 19, 2013, 06:45 AM

certain spring
Posts: 762

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.

Reply # - April 19, 2013, 09:10 AM

Dr West
Posts: 4735

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

Reply # - April 19, 2013, 11:45 AM

luke
Posts: 101

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'.

Reply # - April 19, 2013, 01:52 PM

Dr West
Posts: 4735

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

-Dr. West

Reply # - April 20, 2013, 03:57 AM

certain spring
Posts: 762

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.

Reply # - April 20, 2013, 08:42 AM

Dr West
Posts: 4735

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

Reply # - April 20, 2013, 10:33 PM

luke
Posts: 101

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.

Reply # - May 3, 2013, 02:01 PM

Jazz
Posts: 279

Hi Luke,

Just wanted to wish your Dad continued stability and tolerability on the trial. I hope you're faring well and taking care of yourself. Very sorry to hear about your Uncle's dx. It's very disheartening to have multiple family member struck by illness (the reason for my silence on the boards lately).

I like your father's idea of cancer as a tenant. However, my disease has turned into a home invader/bad roommate, so I guess its appetite for destruction/world domination now resembles... a hostile merger CEO (think Oracle) ?

Hang in there,

Jazz

Reply # - August 9, 2013, 09:09 PM

luke
Posts: 101

Dear all, I have two news to report:

(1) My dad has recently crossed his 2 year mark. He continues to be stable on the present BRAF trial he's on.

(2) My uncle who some of you are aware was recently diagnosed with peritoneal carcinomatosis has passed away. He lived only 4 months from point of diagnosis.

I have a question re my dad: in terms of established treatments remaining for us after the present trial, I know that the leading option is Taxotere. So that I can have a meaningful discussion with our doctors, I just wanted to hear anyone's views or experience on what we can potentially explore after Taxotere.

Reply # - August 10, 2013, 08:26 AM

Dr West
Posts: 4735

I'm very sorry about your uncle's rapid decline, though it's great to hear that your father is doing so well. Aside from Taxotere (docetaxel), Tarceva (erlotinib) is also an agent that is FDA approved and has some activity in patients with previously treated advanced NSCLC, including in those without an EGFR mutation.

Thanks for the update, and good luck for the future.

-Dr. West

Reply # - August 10, 2013, 09:03 AM

catdander
Posts:

Hi Luke, I'm very sorry about your uncle and wish your family healing.
I've pasted a blog post from Dr. West below. I'm not sure but if it mentions this but drugs your dad has taken but not progressed on may also be valuable to try again. It looks like he progressed on alimta but not gemzar? If so gemzar may be an option.
Good luck, I hope he does remains stable on the trial drug. How does he feel with the drug? Please keep us posted.

All best,
Janine

http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…

Reply # - August 10, 2013, 10:25 AM

luke
Posts: 101

Thanks Dr. West, Janine.

I must say the BRAF trial compares very favorably to our first line (CarboGem) and maintenance (Alimta). Fatigue is the only complaint.

Reply # - August 10, 2013, 11:50 AM

laya d.
Posts: 714

Hi Luke:

Just wanted to echo what others have said here. . .I'm very sorry to read about your uncle's passing. I hope that you and the rest of his loved ones are faring OK. As to your Dad, great to hear that he is doing well on his trial.

Best regards,
Laya

Reply # - September 2, 2013, 06:01 AM

luke
Posts: 101

Thanks Laya and all, for your very kind words.

I just wanted to report that my dad's latest scan came back today and he remains stable. In fact, the oncologist commented that his tumour 'doesn't look as solid' as it did on the scan six months ago (not quite sure on what basis he made that observation, but I am not going to argue against that!).

And so, we forge ahead with the Novartis trial!

Reply # - September 2, 2013, 09:16 AM

double trouble
Posts: 573

:-P :-P :-P HAPPY DANCE! :-P :-P :-P

So awesome Luke!
Debra

Reply # - September 2, 2013, 10:32 AM

marisa93
Posts: 215

That's wonderful news Luke, thank you for sharing!!!! Best wishes to your dad, you and the family! :)

Lisa

Reply # - September 2, 2013, 11:03 AM

JimC
Posts: 2753

Great results, Luke! Thanks for providing some happy news!

JimC
Forum moderator

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