Medicine management for cancer patients by family and caregivers

jln Member Posts: 7
I lost my lovely wife recently to Stage 4 NSCLC. She held her faith and hope that she was going to beat it. She showed more courage and strength than I did through the entire ordeal. We got our second opinion from Duke which prompt us to transition from the local health standard treatment approach to the cutting edge technology and the "we can do it" attitude by the Duke community.

Just as our return to Duke was pending, my wife took a sudden turn with steroid psychosis. Just before the night of her emergency room visit for psychosis, I caught her taking the wrong meds. I am at lost as to why the oncologists did not counsel or involve me that my wife was going to suffering from "chemobrain" and be very forgetful. If I would have been put on alert or counseled, this could have well been preventable. But no, we were denied that opportunity to make a difference. Instead they had to wean her off the steroids to restore her mindset at the expense of letting the cancer grow again aggressively. No counseling by the doctors to alert us that this was capable of happening.

But as soon as the lung cancer metastisized to her brain, they did tell me that she was not to drive. Now why be adamant on this and not the medicine she needed help with, especially if there are steroids involved.

Has anyone out there had similiar experiences with this type of situation. I find it hard to believe that there is not a standardized approach by involving family members or caregivers in assisting cancer patients with their medicine administration at home. It seems like a lawyer would pounce on someting like this to make oncologists and doctors more alert to this ahortcoming.

Thanks, JLN


  • here4lfe
    here4lfe Member Posts: 306 Member
    Sorry for your loss
    I lost my wife to Colon Cancer. I can't speak to your experience, but our doctors were not too forthcoming with those issues either.
  • I experienced the same situation, more than once

    My mother was diagnosed on November 6th 2012 with stage 4 lung cancer, discovered by a chest xray ordered by her primary, because after 2 rounds of antibiotics there was no success in clearing the constant cough she was exhibiting. She met with an oncologist the next day who set up an immediate consult with a radiation oncologist that same day. That is where we found out she was currently carrying a softball sized tumor in the RLL (right lower lobe) of her lung. As the radiation oncologist was setting up a 5 week Monday thru Friday radiation regimen, he asked my mom if she had been experiencing haedaches and she replied yes. A scan was ordered of her brain the next morning which found a tumid on her left frontal lobe the size of a quarter. With the finding of the brain tumor, the treatment plan for the lung went on the back burner. A few days past before we were to meet with a brain surgeon. Unaware of the seriousness in the position of her tumor, when the surgeon requested her permission for immediated surgery for removal, she declined and opted for after Christmas. That request was non existent once the surgeon stated that the location of her tumor should be affecting her ability to stand, walk, talk, eat and see. 3 days later the surgery was performed successfully and mom was to start 7 weeks of M-F brain radiation 2 weeks from that point. The 5 week lung radiation was to follow the brain, then she was to start a chemo regimen. This order of treatment was suggested as they did not feel my mom was strong enough to handle radiation and chemo combined. Now to my experience. We were made aware that there was a great possibility of short term memory loss with the brain radiation as well as forgetfullness. She was put on decadron to assist with any possible brain inflammation through out radiation, and we were informed that a small percentage of people (2%) experience difficulty during the weening of the drug as the brain doesn't want to start making the chemical again that the decadron wasreplacing. That was all the info we received through my moms entire fight. So all of the oddities in behavior, involuntary movements of her limbs, tactile defensiveness, forgetfulness, child like behavior, bouts of meanness and not knowing who my brother and I were, never got looked into although we reported each and every one of them. That's when my brother and I decided to make suggestions and even demands at times, due to the lack of care and concern from the medical team regarding the sudden changes my mother was exhibiting. We looked into her medication list, both current and discontinued for clues, and the first thing we requested was to have the decadron back. Once that was back into her system, the tactile defensiveness, involuntary movements and non recollection of her children were deminished. We still had the remaining behaviors, but they were not constant. We experienced a week or so of sadness and fidgeting, sometimes followed by severe vomiting, uncontolled bowel and bladder,and nervousness. After no recommendation after reporting the concern, once again we looked into the meds, searching for additions or deletions that could be causing complications. They had switched her pain meds from oxycodone to oxycontin, but neither the doctor or pharmacist advised us of the high risk interactions her once balanced medication regimen could experience and to watch for certain things. I called two days in a row about this situation and the call I received on the third day from the nurse of the treating physician I took more or less as a threat. She stated that the doctor felt that the calls were unnecessary and he felt we were unable to handle moms situations anymore and was putting in a call to home health. Once I retailiated and offered up the fact that my mothers medication cocktail since her med change was probably the culprit, that call to home health was never made and her pain med was changed. Then there was a tome she was prescribed an antipsychotic to control her hiccups, but the drug leaflet stated that the medication should not be given to a person with advanced lung cancer. It seems as though once a terminal patient starts to decline, the drive to pick them up is not important. The value of their health is percieved differently and the careless acts of the medical team are far to great. EVERYTHING I know about lung cancer I know because I found the answers. The medical professionals suck at providing any information to assist with the stress of the caregiver.