Luke's dad

This topic contains 97 replies, has 16 voices, and was last updated by  bob4beth 2 years, 5 months ago.

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August 3, 2015 at 8:14 am  #1270678    

Luke

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.


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

August 3, 2015 at 7:37 pm  #1270685    
JimC Forum Moderator
JimC Forum Moderator

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!

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

August 3, 2015 at 8:12 pm  #1270687    

bob4beth

Happy anniversary to you and your Dad. That’s great news. Bob4Beth


Sept 2012 my wife Beth was, 64 year old non-smoker dx stage 4 Adinocarcinoma NSCLC EGFR + with mets to liver, bones and brain. Sept 2012 operation to replace right hip damaged by bone met. Sept 2012 5 DVT found in legs. Started Lovinox. Oct 2012 started Tarceva 150 mg per day. January 2013 surgery to stabilize right femur followed by 10 radiation treatments. April 2013 radiation treatments to left femur. May 2013 dx LMD. Started pulse dosing Tarceva 1,500 mg/wk. Sept 2013 we lost Beth.

December 15, 2015 at 8:28 am  #1272215    

Luke

Hi all

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.


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

  • This reply was modified 2 years, 8 months ago by  Luke.
  • This reply was modified 2 years, 8 months ago by  Luke.
  • This reply was modified 2 years, 8 months ago by  Luke.
  • This reply was modified 2 years, 8 months ago by  Luke.
December 15, 2015 at 12:07 pm  #1272219    
catdander forum moderator
catdander forum moderator

Hi Luke,

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_target/
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. ‚Äč(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!
Janine

December 17, 2015 at 7:50 am  #1272227    

Luke

Thanks Janine, grateful as always


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

December 18, 2015 at 6:51 pm  #1272238    

Dutch46

Hi Luke,

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.

December 18, 2015 at 8:51 pm  #1272239    

Luke

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.


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

  • This reply was modified 2 years, 7 months ago by  Luke.
  • This reply was modified 2 years, 7 months ago by  Luke.
December 18, 2015 at 9:11 pm  #1272241    

Dutch46

Thanks Luke,

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.

February 5, 2016 at 6:50 pm  #1272869    

Luke

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?


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

February 7, 2016 at 3:31 pm  #1272895    
catdander forum moderator
catdander forum moderator

Hi Luke,

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.
So
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.

Janine

February 8, 2016 at 1:49 am  #1272896    

Luke

Thanks Janine, it’s working now.


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

February 24, 2016 at 8:08 am  #1273057    

Luke

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 below]


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

  • This reply was modified 2 years, 5 months ago by  Luke.
  • This reply was modified 2 years, 5 months ago by  Luke.
  • This reply was modified 2 years, 5 months ago by  Luke.
  • This reply was modified 2 years, 5 months ago by  Luke.
February 24, 2016 at 8:23 am  #1273059    

Luke

[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?


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

February 24, 2016 at 12:43 pm  #1273063    

bob4beth

Hi Luke

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.

Bob


Sept 2012 my wife Beth was, 64 year old non-smoker dx stage 4 Adinocarcinoma NSCLC EGFR + with mets to liver, bones and brain. Sept 2012 operation to replace right hip damaged by bone met. Sept 2012 5 DVT found in legs. Started Lovinox. Oct 2012 started Tarceva 150 mg per day. January 2013 surgery to stabilize right femur followed by 10 radiation treatments. April 2013 radiation treatments to left femur. May 2013 dx LMD. Started pulse dosing Tarceva 1,500 mg/wk. Sept 2013 we lost Beth.

February 24, 2016 at 12:44 pm  #1273064    
catdander forum moderator
catdander forum moderator

Hi Luke,

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.

Janine

February 24, 2016 at 12:46 pm  #1273065    
catdander forum moderator
catdander forum moderator

Hi Bob! It’s so nice seeing you. :) I hope you have good moments of peace and comfort as well. 8-)

February 24, 2016 at 7:26 pm  #1273074    

bob4beth

Hi Janine

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.


Sept 2012 my wife Beth was, 64 year old non-smoker dx stage 4 Adinocarcinoma NSCLC EGFR + with mets to liver, bones and brain. Sept 2012 operation to replace right hip damaged by bone met. Sept 2012 5 DVT found in legs. Started Lovinox. Oct 2012 started Tarceva 150 mg per day. January 2013 surgery to stabilize right femur followed by 10 radiation treatments. April 2013 radiation treatments to left femur. May 2013 dx LMD. Started pulse dosing Tarceva 1,500 mg/wk. Sept 2013 we lost Beth.

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