[Scan results]

My wife was diagnosed with stage IV adenocarcinoma with multiple brain mets (at least 18) last April. She had WBR for the mets. Testing indicated that she had the MET 14 skipping mutation and was started on Tabrecta as first line treatment. First scan following treatment start was encouraging and indicated her thoracic tumors were shrinking or stable. 

Six month scans indicated that tumors were progressing and she had two additional brain lesions. Lesions were treated with SRS radiation and Tabrecta was discontinued and she was started on triplet Keytruda/Alimita/Carboplatin every three weeks. First scan at the time of the third treatment was again encouraging. Recent MRI indicated no new brain lesions.

Çarboplatin was discontinued following 4th treatment and replaced with Avastin to treat brain necrosis causing her some issues. Scans this past Tuesday showed continued shrinkage of the lung tumors and lymph nodes were stable. However the scan showed 4-5 lesions in her liver. 

Oncologist indicated next standard line of treatment would be Docetaxel/Cyramza. Also suggested a clinical trial using atezolizumab/cobimetinib. Trying to decide which to choose.

[PET results alarming]

Just received the most recent PET results for my wife and they are alarming . Impressions were:

1.    New and more conspicious bony foci seen in the right femur and scapula favoring worsening burden or bonby metastasis.

2.    Mixed changes with regards to burden of adenopathy in the chest as described; slightly worsenng pilmonary malignancy with the right infrahilar lung mass showing increased size and intensity.

3.    Questionable focus seen just anterior to the gallbladder fossa in the liver along with slightly increased bilateral adrenal uptake, all warrant attention on follow-up as new istes of malignancy are possible.  The pancreatic body focus was essentailly stable.

These findings are in stark contrast to those from her previous scan which was 3 months after starting Tabrecta.  We meet with the oncologist on Tuesday and I assume will be looking at second line treatment.  I assume that will be a combination of chemo and immunotherapy.  

[6 month scan results]

My wife (Dale) had her 6 month MRI and PET scans last week.  Unfortunately the MRI indicated a new 9mm lesion in her right temporal lobe.  If you recall she had at least 18 brain lesions at initial diagnosis, three if which were large.  Based on her recent MRI most of those are no longer visible and the two that remain visible they attribute to treatment effects.  Still waiting on PET results.  Dale continues to tolerate Tabrecta well. We were disappointed with the new brain lesion as we were hoping that Tabrecta would be protective of the brain as well.  We continue to take it one day at a time

[Pet results]

We received the results from my wife's recent PET scan. This was her first scan since starting Tabrecta on 5/12. No new lesions. All nodules, but one, were reduced in size most more than 50%. Metabolic activity was also significantly reduced.
She continues to tolerate the Tabrecta well. She is having some ankle swelling but elevating feet for a short period eliminates it. We were very pleased with the results

[PET results]

We received the results from my wife's recent PET scan. This was her first scan since starting Tabrecta on 5/12. No new lesions. All nodules, but one, were reduced in size most more than 50%. Metabolic activity was also significantly reduced.
She continues to tolerate the Tabrecta well. She is having some ankle swelling but elevating feet for a short period eliminates it. We were very pleased with the results

[Tabrecta Update]

My wife is now on week 13 of Tabrecta. So far tolerating well. Fatigue and minor stomach issues from time to time. She has also just started getting some swelling in her ankles. Very minor so far and is alleviated by simply raising her feet when relaxing. 

She also had a follow up brain MRI for numerous brain Mets. This was her first follow up since diagnosis 

The two large lesions were greatly reduced in size. The 15 minor lesions were gone and there were no new lesions. 

We are hopeful that the Tabrecta played some role In this since she also had WBRT in April

She has her first PET scan next week since starting Tabrecta in May. Keeping our fingers crossed

[Update]

My wife is now on week 13 of Tabrecta. So far tolerating well. Fatigue and minor stomach issues from time to time. She has also just started getting some swelling in her ankles. Very minor so far and is alleviated by simply raising her feet when relaxing. 

She also had a follow up brain MRI for numerous brain Mets. This was her first follow up since diagnosis 

The two large lesions were greatly reduced in size. The 15 minor lesions were gone and there were no new lesions. 

We are hopeful that the Tabrecta played some role In this since she also had WBRT in April

She has her first PET scan next week since starting Tabrecta in May. Keeping our fingers crossed

[Introduction]

A setback for my wife.  She unfortunately has contracted COVID,  despite being vaxed and boosted, and had to be hospitalized due to low O2 levels.  She appears to be on the mend.  She has been on low flow supplemental oxygen and they debated releasing her today.  However the infectious disease doc wanted her to complete the 5 courses of remdesivir.  Hopefully if she continues to improve she will be out Thursday.

My concern is that they stoped the the Trabecta while dealing with COVID.  I hope that she will be able to restart as soon as she clears the COVID virus.  I was wondering if any of Trabecta users have had to deal with this.

[Introduction]

Thanks for that heads up. I had checked their site and it was where I became aware of the MET docs there. 

[Introduction]

Brief update re: my wife.  Has been on Trabecta for 15 days.  As of now periodic fatigue appears to be the sole side effect.  Will have f/u PET following 3 months of treatment.  She has had significant hair loss as a result of her WBRT.  Brain MRI scheduled for later this summer to assess efficacy of brain radiation.  Keeping our fingers crossed that she continues to tolerate the Trabecta well.  

We both like her current Oncologist.  However we are setting up a second opinion at Moffit in Tampa.  They apparently have a couple of docs there who specialize in the MET mutation that she has.  So now it is sit back and wait.

[Introduction]

Met with the oncologist yesterday to go over PET and biomarker results.  It was a positive meeting.  PET indicates mass in lower right lung lobe, lymph involvement primarily within the hilarity and mediastinal region.  One small spot in right shoulder blade.  Her cancer actually has 2 bio markers. Met exon 14 skipping and PD-L1.  She will starting with Tabrecta as her first line treatment.  Tabrecta can also apparently cross the blood-brain barrier so may have some impact in eliminating any residual brain mets.  

Its amazing to me that she had no symptoms until the neurological ones.  She had ten lesions in brain.

 

 

[Introduction]

Hi my name is Kevin.  My wife Dale (69) was diagnosed with NSCLC adenocarcinoma in the past two weeks.  First symptoms were neurological. We were devastated when told by the ER doc that she had metastatic brain cancer.  Further work up indicated lung cancer.  Had a PEt scan last Monday and currently waiting on results from bio marker study.  We have a meeting with oncologist this Thursday.  She just completed radiation therapy for brain lesions.  

Glad I found this forum.