OT -Mesotheliaoma

ouchy big time. i know nothing at all about all that but i'd think if he is taking 'tons of narcotics and pain blockers etc. and still has lots of pain' something has been missed somewhere or the drs need to reassess his condition/treatment and attend to it so the pain is managed better than the sounds of it now.. j.

"What Can I Say" wrote ... I was reading the condolances for Claudia and read one from Bonnie Patterson and she mentioned her mother with Methotheliaoma and pain. I tried to email her directly but couldn't get through. My husband has asbestos Lung disease diagnosed but a biopsy of five spots did not show any mesoth--. He is in incredible pain so I would like to know from someone familiar with mesoth--- the kind of pain they endured. He had fallen last year and broke two ribs, never had a Xray at the time but an Xray in the spring showed that two ribs had been broken, were now healed and that he has Asbestos Lung Disease and fluid in the plura. Because nothing showed up on the biopsy they removed the fluid from the plura, said that he must have had pneumonia in the spring and that the pain was from the broken ribs. The pain is progressively worse, lost 30 pounds, takes tons of narcotics and pain blockers etc. and still has lots of pain. Does this sound familiar to anyone. Thanks

My thoughts too. Have you spoken to any cancer care nurses? They often know a great deal more about cancer and other pain management than the doctors as they are the ones delivering it. My sister (not a niurse, I hasten to add) worked for Macmillan Cancer Care for many years, and the docs often asked the Macmillan nurses for advice on pain control and palliative care. Many of the Macmillan nurses are now nurse prescibers, as they know more about what works than the consultants in this field.

thirded! sometimes lots of narcotics means lots of weak ones, which is the wrong way to go about things according to the pain experts, if the weak ones don't work, move to a stronger one and so on. If that doesn't work then there are still a lot of other options, like different methods of delivery, or use of drugs that improve the action of opioids. Also, prescribing in palliative care (not sure whether that is officially where your husband is) is very different from in the rest of life as there isn't any need to worry about the longer term effect of the medications. I'm no expert, what I know comes from researching pain management for personal benefit and stumbling across numerous articles about end of life and palliative care and it's really scary how bad it can be and how disjointed, so don't assume everything is being done, fight his corner!

Good Luck! Anne

They say there is no cancer there, that the pain has to be from something else. He isn't expected to die or anything like that, he just feels like it because of the pain. I am looking for someone that has had experience with the Meso to know what kind of pain they experienced but it is so rare that it is hard to find people with the disease or have had friends or family with it.

You mentioned the pleura - is there any chance this is pleurisy? My DD's BF has just had this and was in agony with it. His was treatable with strong painkillers and antibiotics.

Lizzy

Hugs to you all--MIL passed away with Meth.. Thought she had a cold (for yrs) coughed alot. Once the bad pain started it seemed it was in her back but felt like it was all over from her waist up. He probably should see a pulmonologist if he isnt already. I grew up around Libby Montana if that tells you anything. Scarry!! lyn