Anyone here who has used Sevabertnib for treatment?

@mil63 There are many listed, but for me personally it's been itchy scalp (redness), acne, cramps in calves/feet at night, dry skin, diarrhea, blurry vision. My oncologist has given me medication/creams to help with these side effects, but still not perfect. I suppose it never will be again. All the best to your husband!

@nadine78
WOW is all I can say....first time finding someone using Seva. I can't, I mean I really can't imagine how shocking, at your age, to be given a diagnosis like you have. (I am 71 yrs young, never smoked, ran my own fitness business for 10 yrs in my younger years, jogged up until my knees gave in, and still practise Restorative Yoga.
I understand a bit about the incredibly shocking event that led to your diagnosis. I was symptom free and my 3.3 cm mass was found incidentally. I also have HER2. After a rt lower lobectomy in Feb/25, I was "cancer free", until my first check up, when I found out it had mestastasized to both lungs, liver, spleen and now brain. (in 5 mos).
I'm curious how you were able to actually start taking Seva? Is it available in Quebec? Not in Ontario. I am in a clinical study at Princess Margaret in Toronto. It's a randomized study, so I could have to start with the standard infusion treatment, OR, I could start with Seva. The trial has many, many tests ahead of actually starting the treatment. I find out on the 25th of this month which one I get. It's a cross-over study, so if the standard is not working, I get crossed over to Seva. I can't tell you how difficult it's been wading through weeks and weeks of tests, then radiation treatment for my brain, and finally seeing a date I actually get into treatment. Trying NOT to complain bc Princess Margaret is an amazing cancer hospital and their facilities are sometimes unbelievable to me.
Please tell me more about taking Seva. I have read the list of side effects, but not sure if they are regular, tolerable ones, or something that may knock me out of commission.
Did you start on a lower dose, then triate up, or is the dosage dependant on the type of cancer? How often are you being monitored to assess the drug? Do you feel any better since taking it? Has your cough subsided? How about fatigue? If you are comfortable sharing your your journey thus far, I would be grateful.
I'm afraid that as I wait for any treatment, it is spreading even more. I understand about the aggressiveness of this mutation and I have a good imagination.
I saw your initial post, but was unable to reply clearly as I had JUST had 2 days of brain radiation. I live in south western Ontario, south of Hamilton in a small rural area called Norfolk County. We travel 3 hrs (6 round trip) for every appt. The hospital does book as many app'ts and tests required on the same day.
I just really just want to start treatment soon.
Thanks again for finding me.

I miswrote- his medication will be Zongertinib. They all sound same!

Also called Hernexeos

@donnademps I'm so glad you and @nadine78 have been able to connect! I know you guys are Canadian, but I wanted to share that the US FDA granted accelerated approval for sevabertinib a week ago. I wonder if Canada might also follow suit.
https://www.fda.gov/drugs/resources-information-approved-drugs/fda-grants-accelerated-approval-sevabertinib-locally-advanced-or-metastatic-non-squamous-non-small

@mamajite
Thanks so much Mamajite. The article was helpful for me to read, especially the side effects on the package. It's simple information, but helps me undertstand and/or anticipate more of what to expect.
I'm wondering if the trial I'm in, here in Ontario will help speed up the approval here in Canada. It's in Phase 3, so moving along.

Hi @nadine78, My treatment includes one of the targeted therapies, alectinib. I take a bunch of pills each day, and it has successfully kept my lung cancer under control. There are side effects, of course, but I've learned to manage them over time and have accepted my modified way of life. It gets easier. You'll get there.
It's great that you have a strong support team around you! I'm glad you found our group.

@mil63 From what I've read, Zongertinib works in a similar way to Sevabertinib, so I'm guessing similar side effects. They all have such weird names, I call mine "Bert!"

@nadine78
yes, I have read details about the Trial I will be starting with Seva, the Dr in charge did mention "Zonga" as the next possibility if Sevabertinib wasn't working well. I like the name "Bert"!

@donnademps I'm still in the denial phase... I went hiking this past weekend. I wheezed up the mountain, but I'm not going to let this diagnosis stop me from doing the things I love. I told my oncologist that I feel pissed off that I've been so healthy my whole life, just to be diagnosed with stage 4 lung cancer! So after your lower lobectomy.... you weren't prescribed anything? The docs just figured the cancer was gone? I'm so sorry that it spread the way it did. What a shock it must've been for you. I will try to answer all of your questions. For me, the Jewish General Hospital (Montreal) was offering a trial - it's randomized, so the possibility of doing chemo and not the trial med was there (like with your case). Luckily, I got chosen for the drug - Sevabertinib. Like you said, there were MANY tests ahead of starting. As for the side effects - there are many common ones listed and I pretty much have all of those - scalp redness, blurry vision (not all the time, just harder to read as much), acne, face rash, unpredictable diarrhea, cramps in my calves.... My oncologist is very much like "I know you say you can tolerate these, but I don't want you to live like this" so she gave me creams and pills to help. So for acne/rashes I take doxycycline and use creams (desonide, cabtreo, triaderm). For the diarrhea I was prescribed loperamide. For cramps in calves you really need to drink AT LEAST 3 litres of water per day with electrolytes and for itchy scalp (not dandruff though), I use this spray that I was told about (by hairdresser not doctor) called Davines calming superactive. I find it soothing. I find as time goes on and I use the stuff that helps with the side effects, they get better and more predictable, so I can prepare. Nothing knocks me out of commission and honestly, I wake up everyday, weightlift, go for a walk, clean, go to a sewing class. I'm off work at the moment, but I take care of my mom who has Alzheimer's and I have 2 teenage daughters - so I'm busy! Luckily if I keep going, I don't feel fatigue. I go to bed at 9:15pm and wake up at 6am. I try to keep the same sleep schedule. For me, there was no "lower" dose - I take 40mg daily of Severbertinib (2 pills in the morning and 2 at night). You "can" go lower if you REALLY can't tolerate it, but with my specific trial, if you go lower, you can't go back up again, so for me, it's best we don't play with dosage and risk it not working properly. At first I was being monitored like everyday for a few weeks - but now it's basically every 3 weeks I go to the hospital (2 days in a row) and every 6 weeks I do a full body scan to see if tumors are shrinking. I'm getting my 2nd scan tomorrow. My first scan showed a good improvement, so hopefully I can keep this momentum! I do feel better after taking it because in my specific case, part of the biggest tumor (10cm) was digging into my friggin' airway, making it so hard to breathe, I couldn't even lie on my left side. Now - much better! My cough has subsided. I feel hopeful. Keep me posted on where you end up on the trial - hopefully on the drug. I'm not sure if you're on Instagram, but you can find me there - ladyquinny