Anyone have ALK+ uterine inflammatory myofibroblastic tumor (IMT)?

I have had genetic testing that shows I have an ALK over expression.

Did this alter your treatment? What treatment have you had since your diagnosis?

Does anyone have ALK+ inflammatory myofibroblastic tumor? Or ALK+ cancer of any kind?

@pn1998, in addition to connecting with @angcomeau, I'd also like to tag @lls8000 who is ALK+ and is being treated for stage IV lung cancer and lobular breast cancer.

@pn1998, what treatment plan is being recommended with this further understanding of your diagnosis? How are you doing?

Thank you! I sent a private message to @angcomeau but didn’t hear back. Thank you for trying to connect me with others.
I started taking Alecensa 6 weeks ago. So far, so good. I’ll have a scan in Feb to see if it’s been effective.
I did find Alkpositive.org. I’ve been able to find support with others who are taking Alecensa or other TKI’s for ALK + targeted therapy.
Thank you for your help.

Hi @pn1998, As Colleen noted, I have ALK+ lung cancer. I was diagnosed in 2020 and have been taking Alecensa/alectinib ever since. The targeted therapy was effective for me, right away. Within the first week, I was feeling better. It was amazing. I'm hopeful when I see others that were in the initial clinical trials, that are still taking it after 11 years. I certainly experience side effects and living with any disease isn't easy, but I've learned to cope, and am happy to have access to this treatment over some of the others.
Is your blood work being monitored during these early weeks of taking the drug? Are you noticing any side effects?
Have your doctors said how long they expect you to continue with the Alecensa?

@angcomeau
I joined a support group for ALK+ cancers. It has been helpful for me.
Alkpositive.org
I started taking alectinib and will have my first CT scan on Jan 14 to check on drug effectiveness.
Best wishes to you.

@lls8000 I am so glad you are doing well on Alecensa. That gives me hope. I joined a support group through Alkpositive.org. Even though I don't have lung cancer, I've been able to connect with others taking a TKI. I've been feeling well so far. I have bloodwork every 2 weeks for the first 3 months and then a CT scan on Jan 14.
I have a subtype of uterine sarcoma that is ALK+. My gynecology oncologist and the second opinion gynecology oncologist haven't seen this subtype of uterine sarcoma before. The molecular board at the cancer center where I went for my second opinion noticed the ALK+ on my genomic testing report. I'm so thankful I had the testing done!! I'm grateful for the opportunity to take Alecensa. I assume if it is effective I will be on it or some form of TKI forever. I assume the same for you??
Best wishes for 2026!

@pn1998 , It's great to hear that you seem to doing well. Fingers crossed for your scans on the 14th. My first scans after starting the meds showed significant improvement.
I've tolerated the drug well. Liver and kidney numbers are high/low sometimes, but not bad enough to warrant a change in therapy or dose. I'll continue with Alecensa until the cancer mutates around it and it stops working for me. The alkpositive organization has really matured in recent years. They have worked hard to educate and promote the needs of ALK patients. They have moved additional treatments forward. For me, it's comforting to know that there are other options for treatments once my current med stops working. Even in my five years, I've seen new treatments get approvals, and others on the horizon. That's encouraging. I know if I would have been diagnosed 20 years ago, I wouldn't be here. I'm so grateful for the research and advancements that have been made. Happy New Year!