My sister starting PDL1 immunotherapy trial at UCSF this week!
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Praying for your sister, you and your family. God bless you and keep you and hold you in the palm of his hand.
Sara,
Thinking of you and your family. Hoping that hospice is giving comfort and support to your sister and all of you, too.
Love & Hugs,
DarlaHi Sara, just got home and saw your post. Wishing you all the best and a ton of comfort for your Sister.
Sara,
I’m sorry to hear this news about your sister. I so hope that hospice will be able to keep your sister as comfortable as possible with everything. When my dad went through hospice they did everything that they possibly could for him and I have nothing but good things to say about the outstanding care that they took of him. Nothing was too much trouble for them. I know that this is a tough time for you Sara but please know as well that we are here for you as well.
Hugs,
Gavin
Sara,
So sorry to hear this news. I hope hospice brings her and the family much comfort and support.
Andrea
We’re doing hospice intake now. Home last night after 4 days in hospital. She is doing well under circumstances. Thank you for your concern.
Sara…..I so much agree with your decision. Patient have so little control when ill; one would not want to take away the few decisions to be made. Hoping for the Lasix surgery to be successful. It certainly worked well for my daughter in-law and many others I personally know.
Hugs,
MarionAfter discussion with my sister today, it is clear to me that she wants to keep going with the trial. Her husband and I wish she could have the best of both worlds…the support of home hospice and the trial drug. The drug is potentially palliative, not curative, the doctor said. We have no choice but to support her wishes until she just can’t travel any more, or the CC progresses. Going to try to take my mind off it for a couple of days and hang out with my girls.
Jason….It clearly states: Hospice care can begin when curative treatment is no longer desired or expected to be effective. I suppose one could challenge the “expected to be effective” statement as, it could be argued, Sara’s sister can possibly benefit from the immune response triggered by the clinical trial drugs, and that in itself aids in the end of life treatment. An uphill battle for sure.
Hugs,
MarionMarion,
Any thoughts on the issue of forcing patients to terminate an active trial in order to qualify for hospice?
Thanks,
Jason
Clinical trials or clinical research studies are an important step in discovering new “treatments” however; first and foremost though they are research studies meant to advance medicine. BUT, research participant have the ability to gain access to a drug not yet approved for the market and perhaps can help with their condition. Why do we have to fail approved chemo in order to enroll in a clinical trial? Doctors know that particular drug/drugs have proven to be effective in large scale studies; we don’t know whether the drug undergoing current clinical trial will have equal or better effects on patients.
Those patients diagnosed with late stage disease are not left with many options. Perhaps a clinical research study allows for a chance to respond favorably to a drug showing promise for treatment.In the future, we may hear more of single-subject research studies and N of 1 randomized trial studies. N-1 compares a therapeutic procedure with placebo or compares two treatments by administering the two conditions in a predetermined random order.
Hugs,
Marion
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