Luke's dad

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

Viewing 20 posts - 1 through 20 (of 98 total)
Author Posts   
Author Posts
September 16, 2012 at 1:51 am  #1248065    

Luke

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.


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 topic was modified 5 years, 11 months ago by  Luke.
  • This topic was modified 5 years, 11 months ago by  Luke.
September 16, 2012 at 7:31 am  #1248070    

cards7up

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


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

September 16, 2012 at 11:16 am  #1248080    
Dr West
Dr West

That sounds really encouraging. Good to hear.

-Jack

September 16, 2012 at 1:02 pm  #1248087    

certain spring

Very glad to hear this news.


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.

September 18, 2012 at 6:52 am  #1248148    

Luke

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.


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

October 30, 2012 at 6:37 am  #1249715    

Luke

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…


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

October 30, 2012 at 7:19 am  #1249716    
Dr West
Dr West

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

November 1, 2012 at 7:27 am  #1249759    

Luke

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.


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

November 1, 2012 at 11:37 am  #1249781    

certain spring

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.


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.

November 1, 2012 at 4:26 pm  #1249791    
Dr West
Dr West

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

February 19, 2013 at 1:29 am  #1253965    

Luke

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.


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 19, 2013 at 11:28 am  #1253968    
catdander forum moderator
catdander forum moderator

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-pet-scans/

Much luck,
Janine

February 19, 2013 at 2:23 pm  #1253975    

Dr. Ben Creelan

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.

February 19, 2013 at 4:41 pm  #1253978    

Luke

Many thanks Janine and Dr Creelan.


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 9, 2013 at 8:33 am  #1254567    

Luke

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.


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 9, 2013 at 9:43 am  #1254570    

laya d.

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


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 9, 2013 at 7:53 pm  #1254590    
Dr West
Dr West

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

March 9, 2013 at 8:38 pm  #1254594    

Luke

Hey Laya, Dr. West

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


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 12, 2013 at 6:08 am  #1254658    

Luke

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.


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 12, 2013 at 6:52 am  #1254660    
Dr West
Dr West

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

Viewing 20 posts - 1 through 20 (of 98 total)

You must be logged in to reply to this topic.