Alectinib after Crizotinib. Others' experiences?

Portal Forums Cancer Treatments / Symptom Management ALK Inhibitors Alectinib after Crizotinib. Others' experiences?

This topic contains 4 replies, has 2 voices, and was last updated by JimC Forum Moderator JimC Forum Moderator 13 hours, 43 minutes ago.

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February 3, 2017 at 2:43 pm  #1289972    
dldl94
dldl94

Hello! Husb (StgIV adenoALK+, brain mets) started Alectinib 11/16 as Crizotinib for 19 mo had not appreciably diminished multiple brain mets (despite WBR and Gamma knife) During 19mo of treatment no new brain mets (and no lung/extra cranial mets either) He had his first, brief seizure 4 wks after Alectinib started. CT showed no significant change from 10/16, so await MRI in mid 2/17. Theorized by onc MD that perhaps getting better CNS penetration with this new med, resulting in inflamm changes, leading to seizure? Now on Keppra for seizure prophylaxis. Wonder if any others have ideas/experiences with Alectinib?


My sweet Husb 64:Stg1(<2cm) NSCLC-BAC in 2007, LUL resected (definitive diagnosis!). CT unremarkable until 2/15 with lesions in RML and LL at 8mm. Before lung bx accomplished, emergency eval for left leg weakness; MRI result= 7 brain mets (most less than 5mm-largest 6cm (R parietal) Lung bx = adenocarcinoma, ALK+. 3/15. CT/PET all neg for other mets. 3/15 WBR 4/15 Crizotinib rx. 6/15 Gamma Knife 12/15 Craniotomy resect R parietal “scar” which had small nest of adenoca ALK+. Serial CT-no extracranial dis. Serial MRI-no progression of “scars” but persistant inflamm. Leg leg weakness, some short term memory issues. 11/16 Alectinib
Coming up on 3 years since diagnosis and so grateful-trusting God for tomorrows

  • This topic was modified 3 months, 3 weeks ago by dldl94 dldl94.
  • This topic was modified 3 months, 3 weeks ago by dldl94 dldl94.
  • This topic was modified 3 months, 3 weeks ago by dldl94 dldl94.
  • This topic was modified 3 months, 3 weeks ago by dldl94 dldl94.
February 4, 2017 at 8:35 am  #1289986    
JimC Forum Moderator
JimC Forum Moderator

Hi dldl94,

Although I haven’t seen that theory specifically discussed, it certainly makes sense that the dying cancer cells could cause additional symptoms such as seizures, at least in the short term. For example, after brain radiation cancer lesions can swell, causing symptoms which are often treated with steroids.

I hope that your husband does not experience any more seizures. We look forward to hearing good news from the upcoming MRI.

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

May 12, 2017 at 12:51 am  #1290729    
dldl94
dldl94

Hello-Husb has been stable now 26mo since diag of Stgiv and we are grateful for that!
No progression of disease- but there has been worsening cognition(processing, short term memory) and he uses walker for short walks in house-wheelchair if out and about. No pain. No further seizures. Is on Dexamethasone as mobility worse when off. He continues to tolerate Alectinib. His recent updated scans: CT of chest/abd neg for tumor. MRI unchanged with 5 mets ranging from 9mm to 4.6cm. Recall he has had WBR and Gamma in 2015- so assuming lesions present are inactive.Here are my questions for you please.

1. Has largest brain lesion in frontal lobe. Will be seeing neurosurgeon to discuss – but would like to know of any experiences of benefits to be gained that would outweigh the risks of operating on brain that is radiated? (his prior craniotomies were very close to skull, so seemed less risky). Or should we assume the cognitive changes most likely related to WBR? Had taken Namenda while treated. Did a trial of Donepizil but not helpful and had nausea. Tough finding any studies as to long range effects of WBR- do the declines plateau, or persist?

2. He had incidental pulm emboli on CT (proximal segmental) and further eval revealed clot in left thigh. All clots likely several,weeks old. As he had bleeding in knee and brain (at site of previously excised lesion) on therapeutic Lovenox in past for a DVT – he had IVC filter placed. This was not an easy decision for docs to make. Thoughts?

Thanks!


My sweet Husb 64:Stg1(<2cm) NSCLC-BAC in 2007, LUL resected (definitive diagnosis!). CT unremarkable until 2/15 with lesions in RML and LL at 8mm. Before lung bx accomplished, emergency eval for left leg weakness; MRI result= 7 brain mets (most less than 5mm-largest 6cm (R parietal) Lung bx = adenocarcinoma, ALK+. 3/15. CT/PET all neg for other mets. 3/15 WBR 4/15 Crizotinib rx. 6/15 Gamma Knife 12/15 Craniotomy resect R parietal “scar” which had small nest of adenoca ALK+. Serial CT-no extracranial dis. Serial MRI-no progression of “scars” but persistant inflamm. Leg leg weakness, some short term memory issues. 11/16 Alectinib
Coming up on 3 years since diagnosis and so grateful-trusting God for tomorrows

May 26, 2017 at 5:45 pm  #1290779    
dldl94
dldl94

Hello again…and an update to above. Eager to hear of other ALK + patients journeys?

1) Neurosurg and Neurology both agree the larger brain met is risky to remove and doubtful if any good to come of it. Lack of new brain met or any significant change in size of existing lesions is good news-considering! Will continue on the Alectinib. Will followup with brain MRI in 3 mos.

2) DVT etc- Still without symptoms/signs and hoping the clots well on the road of dissolving.

Thanks!


My sweet Husb 64:Stg1(<2cm) NSCLC-BAC in 2007, LUL resected (definitive diagnosis!). CT unremarkable until 2/15 with lesions in RML and LL at 8mm. Before lung bx accomplished, emergency eval for left leg weakness; MRI result= 7 brain mets (most less than 5mm-largest 6cm (R parietal) Lung bx = adenocarcinoma, ALK+. 3/15. CT/PET all neg for other mets. 3/15 WBR 4/15 Crizotinib rx. 6/15 Gamma Knife 12/15 Craniotomy resect R parietal “scar” which had small nest of adenoca ALK+. Serial CT-no extracranial dis. Serial MRI-no progression of “scars” but persistant inflamm. Leg leg weakness, some short term memory issues. 11/16 Alectinib
Coming up on 3 years since diagnosis and so grateful-trusting God for tomorrows

May 27, 2017 at 9:55 am  #1290782    
JimC Forum Moderator
JimC Forum Moderator

Hi,

Sorry I missed your earlier post, and I’m also sorry to hear that your husband’s neurological issues have worsened. It’s difficult to say whether those issues are related to late effects of WBR or the presence of the current brain metastases, although I will note that several brain mets larger than one cm, and one at 4.6 cm are not at all small and certainly could be expected to be having effects similar to what your husband is experiencing. As far as the long-lasting effects of WBR, that issue is not very well studied, although some patients do seem to continue to decline. Whether that is the result of WBR, persistent brain mets or the effects of extra-cranial disease progression is difficult to measure.

It is good to hear that the latest scan results show stability; hopefully his symptoms will lessen.

As far as the blood clots, the placement of an IVC filter is favored by some doctors and avoided by others. It sounds as though your husband’s doctors weighed the risks vs. benefits of the filter and chose it as the best option. That’s really all you can ask, that a careful consideration of all relevant factors is made before recommending a particular intervention.

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

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