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Posted by What Can I Say on November 6, 2009, 4:37 pm
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
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Posted by J* on November 6, 2009, 4:51 pm
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
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Posted by Kate XXXXXX on November 6, 2009, 6:21 pm
J* wrote:
show/hide quoted text
> 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..
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.
show/hide quoted text
> 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
>
>
>
--
Kate XXXXXX R.C.T.Q Madame Chef des Trolls
Lady Catherine, Wardrobe Mistress of the Chocolate Buttons
http://www.katedicey.co.uk
Click on Kate's Pages and explore!
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Posted by Anne Rogers on November 6, 2009, 6:45 pm
show/hide quoted text
> 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
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Posted by What Can I Say on November 6, 2009, 9:15 pm
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.
show/hide quoted text
>> 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
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> 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..