LORLATINIB vs NILOTINIB

Hey everyone, Long story short: I’m 27 and was recently diagnosed with stage 4 lung cancer ALK positive. It’s not curable, so I’ll be living with this for the rest of my life. I’m currently being treated at Memorial Sloan Kettering, and I’ll need to stay on a very specific (and very expensive) targe

HEADS UP THIS IS A LONG ONE!!! The past two years I’ve (27F) been dealing with severe breathing / wheezing problems. My PCP thought it was asthma, I was handed a pump and some montelukast. It continued and continued but I got used to it at a certain point and believed my doctor that it was just asth

Hello everyone, I’m writing as both a pulmonologist and a son. My mother has ALK-positive lung cancer, diagnosed in 2021. She has been on lorlatinib (Lorviqua) since March 2023, currently 50 mg daily, with an excellent and durable response, including complete response on recent scans. We are unfortu

I am a care partner for a 32 yr old Male who was just diagnosed with stage 4 NSCLC. Mets to liver, brain, bones (hip/spine) and lymph nodes. He got his ALK + diagnosis today and it was the first piece of ‘good news’ in weeks. His doctor has given him the option or Lorlatinib or a clinical study wher

A renowned oncologist specializing in targeted therapy and genetic treatment is now advising us to start **Lorlatinib** instead of **Lynparza** to treat my mom's (64F) pancreatic cancer with liver mets. Opposing what our current oncologist has advised us to do after we stopped chemo due to high bili

My dad has (60M) Stage IV NSCLC ALK+. Currently on Lorlatinib. It was effective for a bit but recent scans showed that the metastasized spots grew. Now, what are the alternative/ possible treatments to get it back under control? If anyone has any experience or thoughts, I would be very interested t

Just looking for some people who have been on either of these and their experiences! I started Dasatinib 100mg for my CML and it worked well for reducing my WBC and BCR-ABL. However, I was only on it for about 2 months as the side effects were pretty intolerable. Really severe bone pain, fatigue, he

Has anyone had any issues switching from brand to generic TKIs? Specifically Tasgina to Nilotinib. Counts have been good for a decade but now insurance making me change to Nilotinib. I know it’s basically the same med (just different fillers) but wanted to see if anyone had experience with it? Thank

Hi, the European Leukemia Net published its 2025 update of recommendations for the treatment of CML recently, you can find it on the internet ([2025 European LeukemiaNet recommendations for the management of chronic myeloid leukemia | Leukemia](https://www.nature.com/articles/s41375-025-02664-w)). T

Hey everyone, I’m 10 months into a chronic phase CML diagnosis with no detectable mutation. I started on Nilotinib, then moved to Dasatinib (up to 140mg), but my BCR’s been stuck around 20% and hasn’t dropped enough. Starting Ponatinib on Monday. If that doesn’t work, the plan is Asciminib, then tra

Hi guys, My husband has been living with CML for around 20 years now (age 36). He had been on Imatinib fot a long time, before he got changed on Nilotinib in 2020. Since he changed medication, his blood tests had always been stable (grade 4 or 4.5) until a few months ago, where he suddenly got to g

I'm about 6 months post diagnosis, and 4 months into TKIs (Tasigna 600mg daily). Super grateful to be TKI sensitive, with BCR-ABL1 down from 41% to .0066%, but now starting to process what life will be like living with CML and nilotinib. Fatigue and dry, itchy skin have been the main side effects so

Hello! Diagnosed with CML July 2024 and been taking Imatinib. However, for the past 6 months my CBC is not normal. My doctor decided to change tki to Nilotinib 600mg. Anyone who uses Nilotinib? It it better? My I know the side effects that you experience? Thank you 🙂

I’m 25 yo male diagnosed w cp cml in dec 2022. Responded well to nilotinib for 4 months with a hematologic relapse recently. Confirmed T315I mutation. Doc suggests ponatinib until we can schedule a bone marrow transplant. Anybody had similar experiences? What does my prognosis look like? Thanks for