Hello,
I'm needing some help. Today I was told by Hospice that they are fairly certain that my Dad has metastases to the brain. My Dad has had confusion/delusion for a about a month now steady. They have juggled pain meds around and given him Haldol. Today they started a med to treat brain swelling. All of this is because of increasing confusion/agitation/delusions.
Yesterday was the worst I've seen yet. I had to leave the hospital because I felt as though my presence was having a negative effect.
It's been my understanding that the brain is one of the last places it will go, though it has been the first place they have wanted to look.
Of course in Hospice there are no tests, so it is all guess work. Anyway, what happens with meso if it hits the brain? I can't find anything in the archives.
Diane

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Diane
Caregiver of Thomas (my Dad,82)
Pleural epithelial meso
dx 11/10
Our battle ended March 16, 2012. Together.

Diane,

I am kinda thinking U R in a bodunk town or WHATEVER .... but if your dad is in a city where there is another ONC (oncologist) and if U have medical power of attorney, and IF AT ALL POSSIBLE ... well CRAP .... He is in VA Hosp, if I remember correctly.

Anyhow, INSIST on a PET SCAN for him to determine if there is INDEED mets to the brain.... Getting a PET SCAN is not treatment to prolong life ....! It would be a diagnostic study to determine if there is INDEED mets to the brain.....

If he has uncontrolled pain elsewhere, and just being on some pain meds could be a cause for his seemingly increased confusion/agitation/delusions...!

Marty was on Hospice and I suspected he had fluid surrounding his lungs .... and I requested a chest Xray one week, not complied with, kinda brushed me and Marty off as it was "sign of nearing end" .... well, one week later I INSISTED that Hospice do a chest Xray and they did.... Then the dumb butt radiologist dictated, possible pleural masses, possible pleural fluid or some other word for the "possible" ... prob SUSPECT .... anyhow, I told the nurse, Hell, I know he has pleural masses, I want to know if pleural fluid.... I WANT TO SEE THE XRAYS MYSELF.... When they did not give 'em to me, I called his ONC who was not a Hospice doc and we got Marty scheduled to go into hosp for an ultrasound to see if flud... SURE 'NUF .... The nurse who would do the thoracentesis (removal of fluid) said, "We're not even going to get it all out today! He will have to come back Monday [it was a Fri we were there for ultrasound/fluid removal] .... Marty had in excess of 4 liters of fluid drawn on those two days..... That's when we had the dumb A S S nurse fired from Marty's care and did stay with Hospice for abt 2 weeks, but I bought my own stethascope and IN ONE HECK OF A HURRY I learned to listen to his breath sounds myself....

We then got off that Hospice and I took care of him, having learned how to tell when he had increased fluid and need to get thoracentesis.

He prob would have had a collapsed lung, died a lot sooner if we had not had such a good ONC.... Hospice wanted to just give pills for fluid.... and our ONC said, No, thoracentesis would be used for PALLIATIVE care ... it certainly is NOT A CURE.

Diane, I went into detail abt this not only to let you know you've GOT RIGHTS TO DEMAND some med findings for your dad right now, and also in case smbo else is reading this who is either warrior or caretaker for pleural meso.

Keep fighting and STAND UP AND STAY STRONG...
Luv 2 all..................Lois

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Lois, Poolboy's mermaid
Marty was stage 3/4 - pleural meso 3/9/07
fought valiantly 27 months
gone to Heaven June 16, 2009

Diane, mesothelioma does indeed go to the brain but rarely so. A PET scan is not the appropriate test but an MRI with contrast is the standard of care. If they suspect brain mets then the first line of action is to immediate treat if suspicion is high. An MRI would require that he lie still, a CT scan though not as reliable would also require some degree of sedation. I suspect that they will treat the symptoms with an anticonvulsant (to prevent seizures) and some dexamethasone (to prevent further brain swelling). You can certainly request to speak directly with the hospice doctor to further clarify the situation. You can discuss with me privately if you wish to know more and want to discuss with some privacy. I am available all weekend. Mary

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Mary Hesdorffer, NP
Medical Liaison, Mesothelioma Foundation