WOW!! That's terrific!
Congrats to your Dad Luke! Here's to being stable!
Take care, Judy
Thanks everyone for your well wishes!
My parents have just booked a trip to celebrate. Of late, they appear to be doing so after every happy scan!
Great news Luke. Stable is a truly wonderful thing.
I am a great holiday planner and taker, and fully endorse your parents holiday plans. We need to take full advantage of the times we have.
Yahoooooooo! I'm so very very very happy!!!!! Thank you for sharing, Luke.
Our most recent scan indicates continued stability, with the disease being largely confined to the original tumour in the lung. If it means anything (I know by now Dr West has a pet peeve against reading too much into SUVs!), the SUV in the tumour is at its lowest since diagnosis.
We are thankful for the very durable response so far under the LGX+MEK trial. I hear from the coordinator that Novartis intends to expand the trial to a larger group of lung BRAF patients - they are just so hard to find apparently!
I hope everyone's doing well and 2014 will give us much to look forward to.
Congratulations on the great scan results...that's wonderful! And although Dr. West doesn't advocate making treatment decisions based solely on SUV trends, downward is always good!
Best wishes for continued success on the trial.
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
I'm happy to congratulate you!
To be clear, my real issue is around making treatment changes, and specifically with reading bad news into a rising SUV or tumor marker, especially if it's subtle...I have much less of an issue with inferring good news from trends in the right direction, even if that's somewhat of a double standard (but it's less of an issue when you're not making an active decision to discard a current treatment approach).
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
Great news, Luke! Thanks so much for the update. . .and continued best of luck to your Dad on his trial!
Looks like I haven't updated for a while and here's the latest: most recent scan revealed stable disease with the exception of a new non-specific lung nodule. Keeping a keen eye on this one; we will know more from the next scan.
The other thing I wish to consult the faculty on is this: the Novartis trial has a very stringent requirement of performing CT scans every 2 months. This is inevitably straining the kidneys, causing creatinine levels to stray out of the normal range (usually outside maximum normal range by 5 - 10).
As a result, we have opted to perform CT scans without the use of a tracer. Of course, this has led to a wall of disclaimer text in the scan report regarding how without tracer use, things don't show up as well as they should etc.
My question is whether you see any significant relative benefits to performing CT scans without the use of tracer in this context. I suppose another way of asking the question is whether the benefit of kidney strain reduction is sufficiently significant to justify taking the tracer out of the scan?
Great to hear a good update on your Dad.
Regarding non-contrast CTs, Dr. Pinder has said:
"If I think the kidney function is elevated because of dehydration, I will usually hydrate the patient, repeat the creatinine and proceed if safe. I also have many patients with chronic kidney problems where the issue is not hydration. In these patients, I usually follow them with non-contrast CTs. A non-contrast CT usually provides sufficient information to make decisions about therapy." - http://cancergrace.org/forums/index.php?topic=6666.msg46882#msg46882
In the same thread, Dr. West added:
"I agree that CT scans with contrast are often ideal but not necessarily necessary, especially to follow disease that you've already identified. Chest lesions are often perfectly manageable to follow without contrast. Liver lesions are often easier to follow with contrast, but you can generally get a decent sense of things from a non-contrast CT, or else you could potentially do a PET/CT to get more information without contrast -- though I generally follow metastatic disease with conventional CT scans and not PET scans.
Of course, as Dr. Pinder said, if the renal function is more reversible, adding hydration and time to improve it is the easiest option.
Overall, though, I can't recall having a patient in whom I just didn't think I could adequately assess the extent of disease because of a lack of ability to give contrast."
Thanks so much for this Jim!
Thanks so much for the update, Luke. . .and "stable" is a VERY good thing. . .
Jim provided the key info. All else being equal, I think it's better to get more information, and I don't favor holding contrast just based on a potential for kidney problems. However, if someone is demonstrating actual problems, the incremental value of the contrast isn't huge, and I have no trouble withholding it.
In general, my perspective is that you prioritize the more immediate problem over the more theoretical one. If the issue is a concept of risk of kidney damage, the real concern of optimizing follow-up of the cancer takes precedence. If the kidney issue is actually present, the equation shifts more toward avoiding more kidney damage if the contrast isn't critical, and it often isn't.
Stable is great news!!!!!!
Oh Luke! I am so happy to hear your father is stable. Contrast gave me palpitations, so my onc. used to follow me without it. He was quite satisfied with the information provided.
Here's to many more stable updates! With much love and utter respect...
So the scans came back today: the non-specific lung nodule from 2 months ago has resolved. Otherwise, stable disease!
This BRAF therapy is really a miracle for us... come August, we will be 3 years post diagnosis.
Great news on your Dad's scan results! We definitely like stable, and hope it continues for a long, long time!
Wonderful news Luke. you deserve it.
That's truly wonderful news! Thanks for the update.
Exactly 3 years ago today, my dad was diagnosed with cancer. Confusion, anger, helplessness - these were just some of the emotions afflicting me, especially during the early stages of the journey. I generally have a more peaceful perspective of the situation these days; but there are still nights when I find my mind wandering in circles, asking myself how much longer stable disease can endure and other painful 'what-ifs'. It was at this dark place where the previously incoherent final sentences of Samuel Beckett's The Unnamable began to make some sense.
I know things can never be perfect like the way they used to be before diagnosis. Even so, I can find things for which I am thankful today. GRACE is among the top of the list. The cutting edge knowledge I learnt here has enabled me to engage and, on more than one occasion, keep my dad's oncologist on his feet as to his treatment recommendations. I am also grateful for the friendship and support I get from the other patients and caregivers here.
Here's to continuing and durable response for everyone who needs it!
Luke, I couldn't agree more. D's dx was almost 5 years ago. I hope your dad meets then exceeds 5.
Thanks for the encouragement and companionship. Grace is an incredibly significant force in my life and I feel so lucky to have this community in my life.
Congratulations! And thanks so much for your kind words about GRACE and the community here. We truly appreciate them.
Wow, look how time flies! It's been awhile since I last posted, and I thought it would timely to report that my dad's latest scan came back and like the previous reports - stable.
I hope everyone's been keeping well. Come 1 Aug, we will be at our 4th year mark.
That's just terrific news, and thanks for sharing his great scan results!! Keep up those good reports, and best to you, your dad and your family.
Fabulous news Luke!
So glad to hear your dad is doing so well, Luke. To give him some encouragement, this month I am six years past my diagnosis and despite setbacks, still doing well. Give your dad a hug for me.
1 Aug marks the 4th anniversary of my dad's diagnosis. I am very thankful for the durable response with which we have been blessed, and I hope this will continue to last.
Many thanks for all your kind thoughts and support over the past years. I hope everyone's keeping well.
That's terrific, Luke!!! Thanks for the great update, and please give our congratulations and best wishes to your Dad. Keep up the good fight!
Happy anniversary to you and your Dad. That's great news. Bob4Beth
It's been a while since I last posted. In short, my dad has had progression over the last two scans, so it does look like the current trial drug (LGX+MEK) is running its course.
The good news is that we recently had a broncoscopic biopsy: although we didn't get a lot of meaningful tissue, but based what we have, the pathologist reports that the tumor cells were '3+ intensity' for PDL1.
I understand this to be good news, but would anyone be able to shed more light on what '3+ intensity' means or point me in the right direction on any materials on this issue, I should be most grateful.
Also, our oncologist mentioned that there are new trials for BRAF 'downstream' targeted therapies which may become available early 2016 - again, if anyone has any information on this, I would be grateful if you could share this.
I take this opportunity to extend my best wishes to everyone for the festive season.
I'm really sorry your dad is progressing on the trial drugs. I hope he does well on the next therapies. I see you asked a question on a comment section that never got answered. I'm sorry about that. http://cancergrace.org/lung/2015/07/17/asco_2015_braf_new_lung_cancer_ta...
The answer is we don't know if someone who did well on one braf drug will do well on another. The more alike a drug is the more likely the effects will be similar but that's only a general rule and no one knows until they are studied in a comparison study. Or, more often if 2 drugs are approved for the same disease, doctors will eventually make unscientific comparisons among patients and outcomes and come to general conclusions.
Trials make many of their own terms and rules. Sometimes not allowing people who've taken similar drugs. Much depends on the questions trying to be answered in the trials. A look at clinicaltrials.gov you can find trials in his area and read up on inclusion and exclusion criteria to help inform you on who can participate.
Here's Dr. West blog post on if expression of PD L1 is necessary. http://cancergrace.org/lung/2015/10/10/value-of-pdl1-testing/
I'm not sure if the above post would even apply to your dad though because a 3+ score is attributed to the highest grade of PD-L1 amplification and considered to have very good chances of doing well on immunotherapy some having very durable responses.
This is info on the Immunohistochemistry (IHC) Assay used in testing nivolumab. "When applicable, the staining intensity of PD-L1 was graded in a 0 to 3 grading scale; the staining intensity values are 0 (no staining), 1+ (weak), 2+ (moderate), and 3+ (strong) (Fig. (Fig.1,1, top)." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4561627/
I hope your dad well for a long time.
Have a happy very FESTIVE holiday!
Thanks Janine, grateful as always
When starting the immunotherapy initially there may be some progression. This is what was told us when in May last year my wife entered the MPDL3280A trial (compared with docetaxel. Unfortunately, she was assigned the Taxotere and did not tolerate it well at all and had to stop after 7 courses with no access to the MPDL3280A. We still do not know the amplification they found which still unreported.
You mentioned they identified the BRAF mutation. If it is BRAF V600E like you to know that after docetaxel my wife went on a chemo pause for 7 months after which time she was able to get the Tafinlar (dabrafenib) / Mekinist (trametinib) combo (addressing BRAF and MEK). This combo had great response in melanoma patients with this mutation and a limited trial for those with NSCLC with the same mutation showed similar results.
She is now on this combo for a 7 months. Atter some rather severe issues with side effects and after halving the Tafinlar dose it has become manageable. There was shrinkage before the dosage adjustment AND after the adjustment. Her next scan is in February.
In my opinion this is definitely a combo to consider should a change of course for your Dad be advisable.
My wife, 69 yrs.
DX Mar 11 NSCLC mBAC (now called AIS).
Mar 11 lobectomy left LL & lower UL.
Scans: May 11 clean; July 11 bilateral GGOs; Sep 11 more prominent GGOs;
Dec 11 worsening GGOs w/ few foci more dense consolidation
Feb 12 PET scan further growth, no mets, BRAF positive (V600E)
Mar 12 started Carbo-Alimta chemo (6 courses) followed by Alimta maintenance; initial shrinkage then stable till early 2014 and back on 4 courses of Carbo-Alimta
June 14 in trial immunotherapy MPDL3280A against docetaxel and was assigned docetaxel
Late October 14 stopped docetaxel after seven courses on account of side effects becoming too severe
On chemo pause
May 15 started Tafinlar-Mekinist combo.
Thanks for sharing Dutch46.
My dad is on LGX818 + MEK162 (I believe they are encorafenib and binimetinib respectively). I have previously asked our oncologist on Tafinlar + Mekinist and his response was that these are effectively similar agents to what we are having now and so he's more inclined to try something else. In addition to immunotherapy, he mentioned that new trials targeting downstream BRAF (useful for those who acquire resistance on BRAF targeted therapies) are likely to become available in early 2016 - so we are watching this space.
I hope you and your wife find encouragement from the fact that we had almost 3 years of disease control with our BRAF treatment.
Three years of disease control is certainly encouraging. This her third line of treatment. Carbo-Alimta worked for two years, the docetaxel did stabilize the disease but the side effects were too severe, so we are grateful for this combo to become available when she needed it.
It is comforting to know good alternatives may come to the market soon.
Wish you and your Dad well, a happy holiday season, and a great 2016.
Just an update that we have come off the trial and are now on Keytruda.
And just two days after the infusion, my dad presented with rashes. I hope it resolves.
Janine, on an administrative point, I tried to update my sign off but it's now not showing anymore. Can you help?
Thanks for the update. I'm sending the best hopes that he does well on keytruda.
I saw this post when you posted but was unable to get to it at the time. I'm sorry for the delay and more sorry I forgot your request.
You can add it back just like you created it. There's a issue with the software when you change anything on, I think either profile (Grace's or WordPress) the signature has to be updated. So the best thing to do is save the sig somewhere safe and if it happens again you can copy and paste it back.
Click on your user name (Luke) to the left of any of your posts
Click (Edit Bio & Forum Signature)
Scroll down to signature box to add signature
Click Save Display Name, Bio & Forum Signature
Let me know if that works.
Thanks Janine, it's working now.
Just a small handful of updates and questions for the community and maybe the faculty:
1) We have gone on one cycle of pembro. A primary observation is severe fatigue but these could have started from even the infusion (so maybe pembro's not to blame?).
2) my dad has had erratic behaviour lately: repeated showers in a day, coming out of bathroom drenched and naked (only once), unable to articulate our names (only once) while recognizing us (ministroke excluded based on post episode MRI). All occurring over within 3-5 days before and on or about the day of the first infusion. We have seen a consultant neurologist who is putting this down to a paraneoplastic disorder, specifically limbic encephalitis. He couched his diagnosis in so many defensive terminologies (and taken into account my dad's history of WBRT and also having researched this condition for myself), I am not convinced he is entirely convinced of the diagnosis himself.
3) Latest scan shows scattered micromets in the brain. Because of their very small size (and that we recently switched hospitals), the neurologist's view is either (a) these micromets were present all along but were not picked up by the machines in the previous hospital or (b) they developed over the last 2 scans (2-3 weeks interval), but in any case, should not be significant enough to give rise to the issues in (2) above. Conjecture on my part but maybe this is why he came to the diagnosis of limbic encephalitis.
4) The oncologist (having considered the advice of the neurologist above) is proposing lumbar puncture on or about cycle 4 of pembro to rule out leptomeningeal disease (I should add that the most recent MRI does not show direct evidence of leptomeningeal involvement).
5) In terms of my dad's state of mind, he hasn't exhibited any extraordinary behaviour warranting mention (such as those in (2) above). He continues to be forgetful and grouchy, but nothing out of the ordinary.
[continues from above]
To be honest, I am as fatigued as I am weary from this fight which in a blink of an eye has been almost 5 years. Old friends like doubletrouble, certain spring come to mind.
I suppose I have no specific questions at this stage other than, help?
I hope the lumbar puncture comes back negative for LMC. Based upon the recent symptoms you describe it is difficult to tell exactly what is going on. Has he had any headaches or double vision? Has his gait changed? If not I doubt it's LMC but I'm no doc.
Sounds like you have really been through the ringer and could use some relief yourself. Being a primary caregiver is very demanding and I hope you are getting some relief to take care of yourself. Your Dad's a real fighter. I wish you both peace and comfort.
I'm sorry your dad is having these neurological problems. It sounds like you and the team have a plan to watch and look again. Let them know if it gets worse in the meantime.
Yes, keytruda can cause fatigue and I can imagine he's grouchy and tired just from being sick. I think my family and doctors would think I had brain mets because I can see myself easily doing things like you mentioned just because I was so scared.
The hardest part of being here almost everyday for 7 years is making and losing friends. I miss them everyday.
Caretakers need to be reminded they need to be taken care of as well. If that's at all possible take others up on invitations to take you out or do things for you. Often people want to help but it's often not possible to know what is needed, so it's up to you to let people know what you need and when. They will appreciate that.
Take care of yourself Luke. Your dad will love that you enjoy yourself a bit.
Hi Bob! It's so nice seeing you. :) I hope you have good moments of peace and comfort as well. 8-)
Although I lost my Beth over 2 years ago (where does the time go?), I continue to find some comfort in Grace because you all were there for me when I was struggling with a very sick wife who is now at peace. I don't check in every day like I did for so long but I continue to lurk and when a fellow voyager is struggling with LMC or neurological complications that can mimic LMC I just try to be helpful. I try not to overstep my boundaries because I know how little I know but if I can help someone with symptom management or identification then I feel like I have done some good. Another reason I hang around is to honor my wife's memory which does bring me some kind of peace.
Keep up the great work you and all the other moderators do on a daily basis.