Alectinib after Crizotinib. Others' experiences? - 1289972

dldl94
Posts:17

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?

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Reply # - February 4, 2017, 08:35 AM

JimC
Posts: 2753

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
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Reply # - May 12, 2017, 12:51 AM

dldl94
Posts: 17

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!

Reply # - May 26, 2017, 05:45 PM

dldl94
Posts: 17

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!

Reply # - May 27, 2017, 09:55 AM

JimC
Posts: 2753

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
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Reply # - May 28, 2017, 02:00 PM

craig
Posts: 330

I don't have much to add to what JimC already said, all of which sounds about right. But I'll add a couple of comments:

1. alectinib seems an excellent drug (and it might eventually become the first line drug of choice if further trials prove it superior alone vs. a sequence of crizotinib followed by alectinib). In particular for brain mets, this research abstract summary might be of interest:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5338141/

2. WBR does have a risk of leading to a decline. I am under the impression the odds aren't high and often with cancer one needs a treatment ASAP rather than worry about a year down the road, but WBR decline is very real to the people who suffer that side effect. If I recall correctly I think an oncologist told me that if WBR decline occurs it usually isn't seen for more than half a year. On the other hand, in an individual patient it is usually impossible to blame a particular cause because so many things are happening at the same time -- brain-penetrating drugs, large mets, inflammation, normal declines, etc.

As you can see in this old article, the merits and limitations of WBR treatments have long been considered.
http://ascopubs.org/doi/pdf/10.1200/JCO.2012.46.0410

FWIW, the concern for the risk of WBR side effects in patients who might otherwise live years more has led some radiologists to consider something called "WBR with hippocampal sparing" (limiting radiation to a part of the brain that is important to memory but might have a lower, but still real, risk of developing brain mets). See this academic consideration of that:
http://ascopubs.org/doi/abs/10.1200/jco.2014.58.4367

I do not know how doctors best manage cognitive issues but I'd assume your doctors are doing the right things. If you doubt that then keep looking for ideas (maybe something new will come from new research).

Best hopes,

Craig in PA

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