I have started treatment with Amivantamab for an EGFR exon 20 mutation

Yesterday I completed the 2nd and 3rd infusions of the first week in Cycle 1, and overall the process went relatively smoothly. That evening I felt mostly normal and did not experience any obvious discomfort.
This morning I had some mild dizziness. After consulting my doctor, I was told that this is not uncommon in the early phase of treatment. It is generally not considered a serious side effect and is often related to the body adjusting after the infusion, so for now it just needs to be monitored.
I also noticed some small acne-like bumps appearing in the central area of my face. I looked up some information myself including some materials on DengYueMed, and it seems that this can be a relatively common skin reaction associated with EGFR-related targeted therapies. For drugs like Amivantamab, which is an EGFR/MET bispecific antibody, some patients experience acneiform rash, dry skin, or mild itching. In many cases, these reactions can be managed with moisturizers or simple topical treatments.
Around noon I went for a short walk and felt some fatigue, although overall I was still able to stay active. My doctor also mentioned that fatigue is fairly common during the early stage of treatment, especially in the days following multiple infusions, and it often improves as the body gradually adapts.
Next week the plan is to begin targeted therapy combined with chemotherapy (the PC regimen), which means continuing Amivantamab while adding pemetrexed + carboplatin. I hope my body will gradually adapt to the treatment schedule and that the side effects will remain manageable.
For now, my overall condition is relatively stable. I will continue to monitor the drug reactions, maintain moderate activity, and try to keep a regular routine. Hopefully the treatment will continue to go smoothly.

Not sure if anyone here has a similar situation, but lately I’ve been reading a lot of forum posts and patient stories online. Somehow it helps me feel a little less anxious.
I was diagnosed with lung cancer not long ago. At first I honestly never thought it could be something like this. I had a persistent cough and assumed it was just a lingering cold. When it didn’t get better, I went for a CT scan and the doctor found a shadow in my lung, so they recommended further tests. Those few weeks were really stressful — doing tests, waiting for results, and constantly worrying.
Eventually I had a biopsy and it confirmed non-small cell lung cancer. My doctor suggested doing genetic testing because nowadays treatment options can depend a lot on the mutation profile.
When the report came back, it showed that I have MET exon 14 skipping. To be honest, I had never heard of it before. I went home and spent quite a while reading about it, looking through patient forums and some information sites, including platforms like DengYueMed that compile information about cancer medications, just trying to understand what it all meant.
My doctor explained it in a simple way — there are targeted drugs that may work specifically for this mutation.
So now I’m taking an oral targeted medication called Capmatinib. I take it twice a day, and the fact that it’s a pill rather than something that requires frequent hospital infusions has helped reduce some of the stress for me.
When I first started taking it, I was pretty nervous about possible side effects. After being on it for a while, the main thing I’ve noticed is swelling in my feet, especially around the ankles. Sometimes my shoes even feel a bit tighter than usual. I also have days where I feel more tired than normal, but overall I’m still able to live fairly normally.
A few days ago I had a follow-up scan, and the doctor said the disease currently looks stable and hasn’t grown, which was honestly a big relief to hear.
Still, the whole process comes with a lot of uncertainty. I find myself reading many patient stories online. Some people seem to respond really well to treatment, while others have more mixed experiences, so naturally I still worry about what the future might look like.
What I’m really curious about is whether anyone here also has MET mutations.
If you’re taking a similar targeted therapy, what kinds of side effects have you experienced?
And one thing I’m especially wondering about:
Is ankle swelling common with this kind of medication? Has anyone found something that helps reduce it?
Reading other people’s experiences sometimes makes me feel less alone.
If anyone is willing to share their experience, I would really appreciate it.

Finally, My Capivasertib Medication Was Dispensed!
Thank you to the country and the hospital, I got my first box of capivasertib! #GetWellSoon #pik3caGeneMutation #AKT1Gene #PTEN Keep going! 👏

From 8201 to Inavolisib
From initially using 8201 to finally using Inavolisib, the journey has been truly difficult.
I’ve always known that she is in a lot of pain. Her pain medication started at 1 pill a day, gradually increased to 5 pills, and now the doctor has adjusted it to 4 pills for maintenance. Every change in dosage is a reminder that the disease is slowly progressing.
Most of the time I understand the reality of the situation. But as a husband, my thoughts are actually very simple — as long as she is still here for one more day, I still have my wife with me.
During this time, we have visited many hospitals, and there were also several times when admission was refused. To be honest, that feeling was truly devastating.
We are not trying to stay in the hospital unnecessarily, and we are not trying to occupy medical resources. For patients with advanced cancer, sometimes we just hope that the pain can be controlled a little better, or that if something sudden happens, it can be handled in time.
My wife has actually been very strong the whole time. She still believes she can keep going for a while longer.
Along this journey, all we could do was keep searching for information — reading papers, looking up patient experiences, and trying to learn as much as we could. While researching on some international drug information websites and patient forums, I also came across platforms like dengyuemed, which provide background information, research updates, and general details about medications. Sometimes, for family members like us, simply having more information helps reduce the sense of panic.
I also truly want to thank two kind people who donated blood for my wife earlier.
At that time, she received several critical condition notices in a row. Without those blood transfusions, things might have been much worse. At least now, each time she passes through a critical moment, she’s still able to stabilize a little.
We will keep moving forward. Stay strong.

Cancer Diary | How Can Families of Cancer Patients Remain Calm?
My husband has been taking Sunvozertinib for 8 days.
For the first three or four days, he only had mild diarrhea, which quickly subsided after taking probiotics, and his appetite was also quite good. I was relieved and even secretly hoped that this time it would be smoother than I had imagined.
But starting on the seventh day, things began to change. My husband said he had mouth ulcers, it was very painful to eat, and he also had a dull ache in his stomach. On the eighth day, various symptoms seemed to suddenly pile up—the frequency of diarrhea increased, his appetite decreased, he became weak, and his heart rate increased.
I took him to the emergency room. He had a complete blood count, electrolytes, kidney function tests, and an electrocardiogram. The results showed sinus tachycardia, but the doctor said it wasn't a major problem for now; the blood count and kidney function were relatively stable, but his sodium levels were low, which might be related to the diarrhea. He was prescribed montmorillonite powder and bifidobacteria, and we were told to go home and observe.
The hardest part of treatment isn't actually the tests and medication, but the fluctuating emotions.
Every time the side effects become severe, my husband wavers. He said today that he wanted to stop taking the medication for a few days to recover.
I understand his discomfort, and after researching DengYueMed, I learned that most of these are manageable side effects. But his pain is his, and I have no right to continue for him. So we contacted the experimental group doctors to report the situation. After evaluation, the doctors determined that stopping the medication was not necessary for the time being and provided a symptomatic treatment plan.
Throughout this journey, I found myself almost constantly on edge. During treatment, I worried about the side effects; without treatment, I feared the disease would progress; before follow-up examinations, I was anxious, and after the results came out, the "pending" and "follow-up recommended" statements on the reports led to repeated research and consultations with doctors… I often felt like I was standing on the edge of a cliff, afraid to let go for even a moment.
One day, I couldn't help but ask my mother, "Is there any way to stop the lives of cancer patients' families from living in constant fear?"
She thought for a while and told me: "Perhaps you could try extending your love for your husband to more lives.
If you only focus your love on one person, it becomes an obsessive love, and obsession brings pain."
But when love is extended to many people, even to all life, it evolves into compassion. Compassion provides the energy for positive responses. The suffering that arises from compassion is a kind of suffering that empowers us to help others. The suffering of compassion increases one's strength, while clinging to love only disturbs the mind and body.
I think that to move on from the suffering of my husband's illness and treatment, I must broaden my heart and care for not only my husband but also many others.
Perhaps one day I will discover that I am actually one with all life; our souls are connected, experiencing the same happiness, the same pain, the same brevity, the same length... Every path has an end, but the river of compassion is endless.