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JanWilson

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  • City
    Hoboken
  • US State (if applicable)
    NEW JERSEY
  • Country
    USA
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    Not a patient

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  1. Wondering if folks here can help with advice on drug copay assistance for Xalkori. Even with insurance it would be costing my mother roughly $4,500/month. We need some help -- I don't know many people who can afford that so easily. I see that there are many drug assistance programs out there but I don't know how they help people or if they help people who do have insurance and are not completely destitute (she has small investments, but doesn't own a home or anything substantial she can borrow against). Is she just supposed to put this on credit cards? How do others do it. Any advice deeply appreciated!
  2. Hi Frank - Are ROS1 folks and caregivers on the ALK Facebook as well? My mother will start on Xalkori in about a week's time for that mutation and I would love to hear more about people's experiences (she's 80, stage IV, not mets so far, both lungs and lymph nodes) and the drug's ultimate cost even when it's in your insurance company's formulary (she's BC/BS federal program). I'm going to reach out on FB.
  3. It turns out that my mom was diagnosed with steroid-induced psychosis. I actually found something about this condition on this forum, going back to 2005. It's a tough road seeing her this way but now that we know what it is they have treated by withdrawing the steroid and, a few days later, they added a small dose of anti-psychotic to try to get her back on track. She was released from the hospital to my stepfather's care yesterday (with help at home) and hopefully within the next several days this could clear up, although it can take several weeks to fully resolve. I am not sure whether she will be able to start treating her cancer before then - I suppose that they will find out when they visit the oncologist, hopefully some time this week.
  4. My almost 80 year old mother is recently diagnosed and living in Modesto. I am across the country in NJ and I am the only child. She lives with my stepfather, who is almost 90 and a friend has been in her home helping to care for her in the week since she's gotten out of the hospital, diagnosed with 3B/IV NSCLC adenocarcinoma with no brain or bone mets, but in both lungs and lymph node involvement. My mother was wonderful and upbeat while in the hospital (almost 10 days, went in for what she thought was pneumonia and was discovered to be cancer). She was eventually weaned off of high flow oxygen and certainly sounded well enough to go home. She has no other illness and has never been on any meds before (still works fulltime). She is not a frail person and quit smoking when she was pregnant with me (and I am almost 52). Since returning home to the care of her friend and husband, she was okay the first few days, and then seemed to decline markedly. More confusion, wondering who I was or repeating what she had just said. I was on the phone with the oncologist when she was in the office and she definitely appeared to understand everything that he said (Friday) but after that she seems to be rushing me off of the phone, and more confused. Sunday, they finally took her to ER because of marked confusion and ER just said she was dehydrated, gave her a few IVs and sent her home. I have subsequently asked her nurse navigator to check her records from the ER visit and there were no other issues. This morning they called the visiting nurse who told them to call the ambulance. My mother had disconnected her oxygen, wasn't letting anyone in the room, wouldn't take meds, eat or drink. Totally delirious and paranoid apparently. She is there now. I am arriving in CA tomorrow and planning to stay a few days to try to get this all straightened out. So my question is this: have any of you experienced this situation where someone seems fine in the hospital and then gets out with a tons of meds, oxygen, and all the rest and just declines? I wonder about the friend because neither my stepfather nor me know her (she's someone who knows my mother through business and trusts) because this is all so unexpected. When I engaged the nurse navigation at the hospital I found out that the friend had told everyone there she was the daughter (not my name, just that they were related) so I did clarify that. The friend will leave when my husband and I arrive and we will arrange for caregivers. Is this something that I could/should expect with cancer care, rapidly cycling from up to down?
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