Hello folks @ Grace,
Am really hoping for some suggestions or guidance the team here.
A brief history
- My father was diagnosed with stage 4 lung cancer (adenocarcinoma) roughly two years back with metastases to spine(cells in CSF fluid) and hips. He tested for EGFR+ then and was given Erlotinib. He has ommaya reservoir through which they administer methotrexate. This was the case till a month back.
- A month back, he started vommiting, had daytime blackouts and was losing balance. Erlotinib was stopped. Chemo was started with alimta+cisplatin combination and Cranial Spinal Radiation started.
- Roughly 10 days back he developed severe mucus and was not able to breath. Radiation and chemo was stopped and efforts were put in to find out the cause of the mucus.
- 4 days back he was not able to breathe and was put under ventilator.
- Currently he is unable to breathe by himself and vital signs are somewhat under control.The mucus has receeded. He is taken out of ventilator for roughly two hours wherein his heart rate goes up and he is unable to come out of sedation. He is under heavy sedation and is unable to communicate. His Glasgow Coma Score is 5 (1(eyes) + 1(verbal) + 3(motor)). Doctors have started him on Gefitinib.
Doctors have diagnosed that it is pulmonar lymphangio carcinomatosis. The next line of treatment we are not sure of.
Question:
- Could you please give any general suggestion on the suggested line of treatment. Any pointers will be of great help.
Regards
Reply # - February 28, 2013, 01:02 PM
Reply To: pulmonar lymphangio carcinomatosis, suggestions on
I'm very sorry your father stopped benefiting from tarceva and is suffering from such complications.
I will ask a doctor to comment on your post. It may take the day to hear back.
I very much hope he can get and stay comfortable.
Janine
forum moderator
Reply # - February 28, 2013, 02:21 PM
Reply To: pulmonar lymphangio carcinomatosis, suggestions on
Oh my goodness. I am so sorry to hear about this.
It is always hard to comment on such a serious situation without seeing the patient directly.
However, when patients are intubated in an ICU it is very tricky to start cancer chemotherapy because of the limited capacity of the patient to be able to tolerate the side effects.
My guess is that the doctors are recommending trying medical treatment like antibiotics and waiting to see if he can improve.
Our thoughts are with you and your family....
Reply # - March 3, 2013, 07:05 AM
Reply To: pulmonar lymphangio carcinomatosis, suggestions on
I'm sorry to hear about this situation. Lung cancer is evil and LMD (leptomeningeal disease) is particularly cruel. In the general case, it's very hard to treat LMD. In my practice, in patients without EGFR mutation, the standard treatment is hospice. In contrast, for patients with EGFR mutation, tarceva can help. Indeed, your father's case sounds like an example of that--2 years of survival with LMD is extraordinary, and typically possible only in patients with EGFR mutation.
It's impossible to say what's going on with your father specifically. It's impossible to provide medical advice regarding a patient so sick over the internet. However, I will comment with some information that may or may not be relevant--I hope that it helps.
When patients who EGFR mutation who progress on tarceva are taken off of it, there can sometimes be a "flair" reaction where the cancer grows rapidly. The most common explanation is that at progression, many sites of cancer are actually still sensitive to the tarceva, and it's removal disinhibits their grows and allows them to grow rapidly.
In patients who progress on tarceva, alternative dosing schedules have been tried. For LMD, 600mg every four days or 1500mg/week have some data. I'm not aware of positive data with gefitinib after tarceva; I'm pretty sure that there are none with LMD.
All of that is medical information; now for a more human thought... I've never had a parent go through something so terrible, but I have been there with far too many patients that I've cared about. At some point when a patient has a terminal cancer and is so sick that they need a vent, you need to start thinking about that person's values and how far they would want to go with artificial support measures. There comes a point where additional medical interventions have so low a chance of helping, and the burden of potential suffering so high, that allowing the person to die peaceful is the kindest choice and a last act of kindness.