Anyone here who has used Sevabertnib for treatment?

@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

@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

@nadine78
Nadine....OMGoodness, you have a very full life! I'm in awe of your determination to keep living your best life, but with a 10 cm tumour and the cough symptoms, it must have been a hard pill to swallow initially. (no pun intended).
First off, how did your 2nd scan go? I sure hope you saw some shrinkage!

I was finally randomized and I have just started Sevabertinib. I was so excited when I was told, I cried. As you know, this is a cross-over study, but I really didn't want to have to go thru the Standard Chemo and delay the Seva again. My tumours are still growing, I was getting very anxious about not having ANY treatment yet. After 3 doses, of Seva, I have yet to have any side-effects. I know they are coming tho.
I sure appreciate you sharing all of this info regarding the side effects that will likely show up.I can be "ready" for them.
Do the number of your appts with the hospital start to slow down any after 4 wks? We live a 3 hrs drive from Princess Market, and are often there 2 nights a week. We stay at their Lodge for people needing any cancer treatment or tests and are very grateful for a huge difference in price for a hotel room (in Toronto) but it still tires me out with all of the stacked appts and tests required for their data.
I had no idea about taking the "lower dosage" could not allow me to go back up! This will be a question for my nurse next time I see or chat with her. (This woman is an oncologist nurse who reports everything back to the Dr leading the trial. She is SOOO dedicated to her job, she chats with me anytime we have a question, and books our time at the Lodge, knowing our situation. She actually called me at 8:00pm on a Friday to check about my 2nd dosage). Do you have a good "contact" you can count on?

When I was released from the hospital, I was perscibed Gabapentin. However, I was on a very strict regime, receiving certain meds at a specific time. BC I was so afraid of being in so much pain, I asked for the same schedule they were using. I asked at least 3-4 times and was told I would get it. I did not get it. The scripts were merely saying "take every 3 hrs, or 5 hrs. I was previously on several meds due to my Fibro, neuropathic pain from 3 bouts of shingles, etc, etc. I was a MESS. My adult daughter took about an hour to set up a schedule, but my pain was still severe. I was on the phone trying to talk to the nurse at the hospital several X's a day, not getting a call from her sometimes the following day.
I have an appt with a pain team at the hospital and they will be able to become the main group that can perscribe for me. Right now I am getting my scripts from 3 different sources.

I sure understand your feelings about being in denial. A 10 cm tumour would knock me off my feet. My first finding was found incidentally after breaking some ribs on the other side.

I was very angry after discovering so much metastisis on my very first check-up! I'm mostly angry that I am still dealing with so much pain from the lobectomy, and it didn't work! It was really difficult for me to be able to start looking forward and finding gratitude again in my life.
Thanks so much for your reply. I have an Instagram account, but don't use it much. Having said that, I think I will start using it as I have many friends who post there.
No pressure, but let us know, in your own time, how your 2nd scan went when you hear the results.

@donnademps I'm glad to hear you were put in the sevabertinib arm of the study. I hope the pain clinic can get that under control for you and simplify your meds. it's easier to manage everything when you aren't in pain. having cancer is hard and I applaud your continued courage and perseverance. hugs! ❤️

@mamajite
Thanks for the encouragement. I have had some very difficult times throughout my life, but never one like this one. I learned over the years that there were tools available for me to use to move forward. I also learned it takes “work” to move forward. “Acceptance” was a biggie for me, I have always had great love and support from my family and now, even more as my kids are adults with families of their own. I have been married to my husband for near 50 yrs. So, so much to be grateful for. I feel brave at this point, but I am preparing myself for fear when my symptoms become more prevalent. That’s why this forum it’s so beneficial for me. Learning from others what I may or may not face, and readying myself for that. I see how you and other volunteers here dedicate your time and your energy to others so very often. I’m so very grateful for folks like you.❤️

Hello @ donnademps,
I, like mamajite, applaud your continued courage and perseverance !
You are a brave woman…. I also feel the same about the folks here as you do, I’m grateful for everyone, as well for you, as you are a valuable member of this Mayo Clinic.
🤗 Daisy

@daisydays
Thanks so much. This is a great place to actually share real information about our situations. Even tho I share with personal friends, they can't possibly understand the real details of my cancer. Like what nodules are, or how large a 2 cm tumour is, or what metastasis, or what real fatigue is (all I need to do is have naps). Here, I can speak openly, knowing most here understand and will contribute if they are able. It's a place to learn about other cancers. When I read posts and don't understand what the issue is, I "Google" it and learn a bit more.

@daisydays
Thanks so much. This is a great place to actually share real information about our situations. Even tho I share with personal friends, they can't possibly understand the real details of my cancer. Like what nodules are, or how large a 2 cm tumour is, or what metastasis, or what real fatigue is (all I need to do is have naps). Here, I can speak openly, knowing most here understand and will contribute if they are able. It's a place to learn about other cancers. When I read posts and don't understand what the issue is, I "Google" it and learn a bit more.

@donnademps I'm so glad you got the targeted med! And honestly, maybe you won't get the same side effects as me. I'm trying to get used to this new "normal" but I don't know if I can. I still see my name associated with cancer in an email or something and I'm like "who me?" I just can't believe it - but as we all know - cancer doesn't discriminate, that's for sure! As for your question about appointments - as time went on and we got into a better rhythm (and less tests were required) - I usually have 2 appointments on 2 different days every 3 weeks. So every 3 weeks I have go to to the hospital on a Thursday and a Friday. One appointment is for blood tests and an ECG, the other is to get the drugs and talk to the oncologist. Then, every 6 weeks I have a scan. As for this 2nd scan - no results yet.