hammer
![]()
Posts:36
Hi Jim,
My sister was diagnosed with leptomeningeal cancer a few weeks ago (on top of her stage IV lung cancer). She has been getting intrathecal chemo. Her last two spinal fluid tests came back negative. However, she has been doing this weird glazed staring. She can still answer our questions, but it takes her longer to respond. This makes me wonder whether the negatives were false and if the cancer is causing some brain symptoms? Did your wife have anything like this? We also have my sister on a fairly high dose of Fentanyl patch for severe pain in her lung tumor area.
Best,
Hammer
Forums
Reply # - February 8, 2016, 04:30 PM
Hi Hammer,
Hi Hammer,
I didn't get a chance to respond in your previous thread, but I too am sorry to hear of your sister's LMC diagnosis. I know how difficult a time this is for her and for your family.
I experienced something similar with my wife, who would seem to nod off in the middle of a conversation, then just pick up where she left off. Her eyes would close, but it was more like a video on pause because she didn't have any of the signs of awakening from sleep. What complicated an understanding of what was happening was the pain caused by the underlying lung cancer and the heavy pain medications (she was using fentanyl patches as well as liquid morphine). Liz was sleeping a lot in the last few weeks before she passed, but I was never certain how much that was due to her cancer (which had metastasized throughout her body), her LMC or her pain medications. I'm sure each played a role.
It is common for spinal fluid testing to be negative even when all symptoms point to LMC, but there's just too much going on to be sure what is causing her behavior.
My thoughts are with you and your family.
JimC
Forum moderator
Reply # - February 8, 2016, 05:35 PM
Thanks Jim,
Thanks Jim,
That is exactly how we are feeling. It is confusing because we can't be sure if the lack of appetite, sleepiness, strange staring, hard time following TV shows, etc, is the LM cancer, the mets throughout her body and brain or the pain medicine.
It is also confusing because we don't want her to suffer by not entering Hospice soon enough but we also don't want to quit trying the Opdivo too soon before it might have a chance to work. They have said that when we enter Hospice, they want to switch her over to Methadone for better pain control. She is at the max dose where the patch can be effective. Dilaudid does not seem to work well for breakthrough pain.
We may try a nerve block this week.
I am wondering if even though it can take 8 weeks or more for Opdivo to work, still, if her pain is so intense and not getting better, after three infusions could Opdivo possibly be working. It seems unlikely.
Take care,
Hammer
Reply # - February 8, 2016, 08:36 PM
Hi Hammer
Hi Hammer
So sorry to learn about your sister's diagnosis. Hopefully the intrathecal chemo will forestall the progression. That glazed stare you portray was one of many symptoms my wife experienced. If you look at one of our last photos together you will see it is there. I wish your family the best and hope for a miracle for your sister.
Bob
Reply # - February 8, 2016, 09:12 PM
Bob,
Bob,
Thank you so much for taking the time to tell me that your wife also experienced this symptom. Also thank you for your compassion and good wishes for my sister. My heart goes out to you because you lost your wife.
--Hammer