Tagrisso vs. Gilotrif? Please Share Your Experience

[Karen_L]

I am EGFR positive: S768i (exon 20)  and L858R (exon 21). I'll be having gamma knife for a small brain met. The current plan is to start me on Tagrisso. But I've read stuff that suggests an earlier generation TKI--Gilotrif (afatinib)-- followed by Tagrisso on progression is a more effective path. The caveats: the study I'm looking at talks about this sequence as being effective for exon 19 deletions, S768I is an exon 20 substitution mis-sense mutation. 

I'd love to hear any experiences people have had with this decision, these medications, anything related to these mutations. Thanks in advance,

Karen

Gilotrif-Tagrisso sequence.pdf

[LouT]

Karen,

I have no experience with any immuno or chemo therapy so I can't help, but I will be watching this post to see what answers come in.

Lou

[Judy M2]

I was put directly on Tagrisso for Exon 19 deletion even though I did not have brain mets. There was no consideration of an earlier generation drug. Maybe post this question to the Facebook group LUNGevity Targeted Therapies Group? 

[Karen_L]

Thanks, Judy M2. I called the cancer center, explained my anxiety about the medication choice, and said I didn't know who'd be best to talk to. They had the oncology pharmacist call, which I think was a brilliant move. We had a good chat about mutations and matching TKIs; he suggested I message my oncologist via MyChart with a few sentences about my concerns. He also referenced the NCCN guidelines, which I looked at before my onc. responded. Those calmed me down.

I also spoke to someone in my cancer group and he reminded me that at some point, lung cancer treatment is basically a "throw stuff at it and see what works"  proposition. The oncologists's response was a straightforward explanation of her reasoning. It made complete sense to me. I am moving ahead with Tagrisso, which is a long, drawn out process....

P.S. After a lot of research, I learned the side effects of Gilotrif are horrendous so I'm just as glad to save that for another time....

[Judy M2]

I understand that Tagrisso is more tolerable than the earlier generation drugs. Plus it crosses the blood/brain barrier and I'm not sure if the early drugs do. Anyway, best of luck! Oh, and don't be worried if yours comes in scary biohazard packaging. Some pharmacies go overboard. My AZ pharmacy just sends it in a regular FedEx package.

[Karen_L]

Thanks, Judy. Since I have a brain met, this is important! And, I anticipate scary packaging-- I was told by the oncology pharmacists that UNDER NO CONDITION SHOULD ANYONE ELSE EVEN *TOUCH* this highly toxic drug. And to think, we ingest this voluntarily, and with gratitude. 

K

[Judy M2]

Ugh, pharmacists really freak people out. Astra Zeneca does not have any such warnings in its literature. There's been loads of discussions in the FB groups about not even handling the pills, but again, there is no such advice in the literature. I believe that pharmacists automatically lump Tag into the chemo category. Anyway, for 2 years I've been taking my Tag (which has a coating on it) without special handling like any other prescription and my hand hasn't fallen off yet. There is no precaution about being close to others or sharing bathrooms. It takes time for your body to adjust to it, but often the results are remarkable. 

[Karen_L]

Thanks, @Judy M2. The Tagrisso arrived Thursday in a large anonymous package. Inside I found a purple, zipped padded bag holding: a high-quality water bottle labeled "Hope. Daily." (I would have preferred something like "More Research!" but you get what you get....) Also, a small cancer cookbook; many, many slick pieces of paper, most of which I looked at, decided it was marketing, and tossed; more slick pages of information from my speciality pharmacy, some of which was useful; a cloth Covid mask labeled "Astra Zenica," which I  immediately tossed; two pages about side effects-- black and white, on cheap printer paper-- and a small bottle of pills.

Can you tell I'm disgusted by big pharma's approach? I'm paying $83.10 per pill and for that I get the miraculous possibility of NED and I'm so grateful for that. But they have the audacity to charge my insurance company $16,000 per month? We qualified for what I call a pity discount, which I am grateful for, but really....

And I can't help but wonder how much they spend on the other stuff. (As my daughter said, "Ooh, pharma swag"--in her industry, companies routinely give out "swag"-- typically, high quality items like jackets, travel mugs, *very* nice pens, etc.) 

Ah well. Day 2 and the nausea from Day 1 is subsiding. I am looking forward to the day. Hope yours is nice. 

K

[Judy M2]

If you have nausea, be sure to ask for an anti-nausea med from your oncologist. It should get better as you get used to it. Taking Tag at bedtime helps too. FYI, I never got a swag bag, just the pills. 

I've actually been dealing with a home emergency for the last week. My dishwasher had 2 separate leaks and destroyed my kitchen base cabinets. We've had the demo, cleanup and mold remediation done and had to stay in a hotel (with 2 dogs) for several days. Our homeowner's insurance company has been great, but even so this episode has been exhausting. We can expect to be out of a kitchen for 6-8 weeks. My strong recommendation is to get water sensors for underneath dishwasher, refrigerator and all sinks. Wish we had done that! 

[Karen_L]

@Judy M2, Oh no! I feel your pain— we had the exact same thing happen to us in our former house. After all the wet & mold had been removed, we had a lovely view of the garage without having to leave the kitchen…. I ended up putting a piece of plywood over it so no kids would fall through. It is so stressful to through the disruption of demo, remodel, replace…. I can’t remember how I managed cooking etc.; I’m sure you’ll figure that out. Maybe the insurance will pay for a rental and you can pretend you’re on vacation?  Hang in there! 

And, thanks— I am fully stocked with 3 different anti-nausea meds. The nausea  seem to have settled down, though, & I’m glad of that. Gamma knife tomorrow. I’m entering Stage IV with a bang.