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LauraRem

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I was dx'd in Dec 2017 with stage 4 nsclc.  Went to the doc with shoulder pain.  An xray of the shoulder showed a mass.  Further scans showed total coverage of the right lung with cancer, and mets to the bones in the right hip and leg, which pain I had thought was my arthritis getting worse.  Have had chemotherapy and immunotherapy for a year, and am currently under hospice care, as the chemo weakened me to the point that I could not tolerate any more, although my next step would have been to look for clinical trials.  Have had radiation treatment for the hip pain and am in hospital as I speak for uncontrolled pain management of right hip.  Haven't been able to get the pain level down below a 6 out of 10.  But that is better than the 7/8 before radiation.

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Hi, Laura, and welcome.

I'm so sorry about your pain--I hope they can get it under control.  I don't have relevant experience, myself, to share, but others should be along shortly who may.  

Hoping you get some relief soon.

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Thank you, it is the worst part of this for me as it colors every waking moment, and I don't want to sit around in an opioid stupor all the time to be unencumbered by pain.  I just started to be able to read for pleasure again after bringing "chemo fog" mentally for the past year, and that is a bright spot.

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Hello Laura-

Thank you for sharing your journey with us.  I’m so sorry about your diagnosis.  I was also diagnosed at Stage IV & remember the opioid stupor.  My coughing spasms couldn’t be controlled & I hemorrhaged during the port insertion.  Th opioid took off some of the discomfort but not a whole lot. I was eventually detoxed when my symptoms improved.  

I hope the hospital team can develop a plan to manage this for you.  I admire your strength & ability to find the bright spots in the day.  Please keep us posted. 

Michelle 

 

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Welcome Laura,

I am happy you have found us, not so happy as to why.  I'm very sorry to hear about the severe pain you are in and wish I had a solution for you.  My mom lives in daily pain as well - pain from uncontrolled rheumatoid arthritis and from a spinal injury.  But the most pain she has ever gone through was related to the chest tube after her lobectomy - that was really the only bad part of the surgery for her.  It was scary to see her in the "opioid stupor" and even scarier to see her come off of it.  I commend you for making the brave choice not to enter the stupor for relief as the constant pain must be very taxing on you. 

Is there a plan for more radiation in the near future?

Take Care,

Steff

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4 minutes ago, Steff said:

Welcome Laura,

I am happy you have found us, not so happy as to why.  I'm very sorry to hear about the severe pain you are in and wish I had a solution for you.  My mom lives in daily pain as well - pain from uncontrolled rheumatoid arthritis and from a spinal injury.  But the most pain she has ever gone through was related to the chest tube after her lobectomy - that was really the only bad part of the surgery for her.  It was scary to see her in the "opioid stupor" and even scarier to see her come off of it.  I commend you for making the brave choice not to enter the stupor for relief as the constant pain must be very taxing on you. 

Is there a plan for more radiation in the near future?

Take Care,

Steff

 

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Thank you for responding.  It is nice to know there people out there who "get it".  My hospital team is working hard to get this pain under control for me, and I am confident they will find some answers.  They have started me on something new, a strong form of ibuprofen, to get the inflammation down.  It is an I.v. only drug, not simething I can use at home, and I am not sure of the name at this moment.  But if it can get the inflammation down, then the other drugs which have not been working, may be able to do the job.  I am very encouraged after this morning's consultation with the pain doc.  And I love their keep at it spirit.   They aren't giving up on me or on getting me to a better place!

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