Her condition has drastically changed

Tue, 01/24/2023 - 13:39
Sel87
Posts:0

Hello, my mother was diagnosed with stage 4 lung cancer with metastasis to different areas. She is a 50 year old lady (non smoker). Our oncologist at UCSF put her on Tagrisso when she was first diagnosed, in which it has reduced the tumor by a lot in her lung. About 4 months ago, her symptoms, behaviors and body functions have drastically changed and continuously get worse. Our oncologist also doubled her tagrisso dose about a month ago, to ensure treatment. Lately, she has had impaired speech, her motor movement have weakened and has loss of balance. It’s hard to move some of her body parts. She needs a caregiver (our family) practically 24/7. She has also became very nervous and hard to sleep. Our oncologist was a bit nervous recently that it could possibly be or not be Leptomingeal spread. They have not diagnosed it yet, but she has done her Lumbar puncture and blood tests about a week ago. The blood work in her CSF looked all to be normal, but the cytology report has not come out yet. Will be in by this week. Her brain MRI and CT did not show any cancerous cells or tumors. Any insight on this would be great, as we’re trying to figure out the best way to manage her symptoms as of time being. There seems to be a neurological issue and it seems like her CNS is affected. But our oncologist has yet to diagnose any of that. He is well aware of all her symptoms and was not too sure about what’s going on. He is awaiting the cytology results for her spinal fluid. Thank you!

JanineT Forum …
Posts: 475
Forum Moderator and former caregiver

Hi Sel87, Welcome to Grace.  I'm so terribly sorry that your mother is going through this.  I'm going to assume that there are no brain mets found, so let me know if I'm wrong on that.

 

Lepto can be difficult to diagnose pathologically.  When it is suspected in a woman your mother's age with an EGFR mutation raising the tagrisso dose is the most practical course of action.  If it works, well that's all we're looking to do and without further procedures that wouldn't change treatment. 

 

I'll post some links in a bit.  Your mom is lucky to have you asking questions on her behalf. 

 

Take care,

Janine

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

JanineT Forum …
Posts: 475
Forum Moderator and former caregiver

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

Amy B
Posts: 9
Executive Director of GRACE

Sel87, thank you for reaching out to us. I hope that the link Janine sent to you was helpful. As you can imagine, many of the questions that we see here in the GRACE forums have come up before, and it is often very helpful to read through some of the previous conversations. With that, if you are looking for some more information, please reply back and our forum moderators will be happy to continue helping you to educate yourself so that you can talk to your mother and her physician about everything that's going on in a more in depth manner.