My sister starting PDL1 immunotherapy trial at UCSF this week!
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All great inputs and ideas. THANKS.
The nurse practitioner at UCSF said she appreciates Ken and my concerns but legally can’t discuss my sisters situation with me. (!)my sister prepared the legal papers naming me and her husband as co-health care proxy (power of attorney) but those forms never got signed by witnesses. Also, my sister prepared her POLST but never had a doctor sign it. In all the craziness, those important details fell through the cracks. My bro in law has left all “paperwork and scheduling” to me my ill sister to initiate and follow through on.
The trial NP said she would call my sis and ask her to fill out yet another form giving permission for me to be “in the loop”.
I get the feeling that they are not really looking at the big picture and just want to keep their enrollment up for the trial.
On another note, my daughters LASIK surgery this afternoon went well but she fell apart in the waiting room with fear and anxiety. They gave her an extra half dose of Valium. We were asked to accompany her in the surgery room and it was the trippiest thing to watch! Reminded me of ‘A Clockwork Orange’. She is resting in a dark motel room sipping a peach milkshake. One more hurdle over with for the week!
Thanks again everyone.Dear Sweet Sara,
You are an amazing sister, so much love and support. Praying for healing for your sister. I hope you can get hospice.
Love
LisaDear Sara,
I hope this is only a bump on the road and that Nicole will start showing progress with the new treatment.
My thoughts are with you and all your Family.Jason, i absolutely agree on the cruelty and unfairness of the system. A patient must have go thru all the unsuccessful and debilitating treatments available, BUT STILL BE HEALTHY AND STRONG, to be accepted in any trial.
The other irony about clinical trials, as Don (Adjuster11) discussed on a previous post, is that most of the promising ones have age exclusions. Some over 70 and others over 60 yo.
How is that acceptable when all the studies shows that 2/3 rd of cc patients are over 65 yo. That means that 66% of us or loved ones are not eligible for the good trials.Is that our fault? the system? or our government?
Emad
Sara,
Just a thought….if you can’t get her into see an oncologist, maybe you should just head to the ER. They will then have to figure out what is going on and be able to get the right people contacted to get the ball rolling for hospice???? Hang in there, my prayers are with you and your sister!!
Sending strength,
MelindaSara,
Sorry to hear what you and your sister are going through right now. I so hope that things get sorted for your sister and I know how tough all of this is for you. You’ve got a lot to deal with right now and that is an understatement to say the least. You know we’re all here for you and you can express anxiety or anything you want to here as much as you want to. I know from experience that that can help. Thinking of you right now.
Hugs,
Gavin
Sara, I am sitting here racking my brain, which could be a dangerous thing! IF the ONC would see her now and check her in to the hospital for a couple of days and they all could see what is going on…..she could possibly go to a care center be it Hospice or some other kind. I know that most insurance will cover that if one goes directly from the hospital to the center. Just a thought. And what If the ONC got hold of the insurance company and told them she Is off all trials. How aggravating are these med people as they must know things can change with CC in a day. I am right with you, be strong!
They met with Hosoice of the Valley about a month ago and like that company. Just had to forgo services due to pursuing HIFU at Stanford (which she did not end up getting due to choosing PDL trial.. Can’t do both. Now it’s the trial that prevents getting a hospice referral. She does have a palliative support team at Stanford. We saw an oncology dermatologist last Thursday but then, although a bit confused and with a bad memory, her cognition wasn’t overtly bad. Still, she couldn’t recall what the doc told her and Ken wasn’t there. He is not proactive and their communication style is strange. I finally pinned him down for a brief phone conversation yesterday and found he is not support in the trial, says my sister is barely hanging on cognitively and physically and that he wants and needs hospice support.
Anne Rheinert at UCSF (nurse practitioner who has seen My sister for trial screening physical ) emailed me back last night to say “well, I saw her last week and she had no signs of dementia”. She also didn’t believe My sister has pulmonary emboli even though the ct report said she does (she scanned it on a hurry).
My sisters physically andentally changing so fast. The home health nurse from Amedysis comes once or twice a week to drain chest tube and I hope they can see the overall situation and talk to Drs at UCSF or Stanford about appropriate care. It’s a hardship getting her to appointments as she is so uncomfortable now.
Thanks for letting me express my anxiety here. Thanks for all of your suggestions and big hearted support.
Sara (Willow)Willow,
What an unfair and even cruel system! Clinical trials generally make you wait until you have failed to respond to chemo in order to participate. Then, when you do participate, you have to pick between a potentially helpful trial and the needed comfort offered by hospice? That just does not seem right.
I am not sure what to suggest. Perhaps you could get a hospice “consult” to see what they would suggest without actually going on hospice? You could also try to contact one of the other oncologists at UCSF. Dr. Vinook was the name given to us as the backup for Dr. Kelley’s patients when she was out.
You must be exhausted trying to support your sister and navigating an out of network clinical trial. You are doing an amazing job. Hang in there,
Jason
Willow it is not just CC specific. All I know is Teddy followed it very closely except for #10 and those I have sent it out to had much the same symptoms. I will send it now to you, it may help a little on what you might expect. Sending hugs and love.
Thanks Lainey. She can not get the referral for hospice while in a clinical trial because the trial is considered “active treatment”. Her onc at Stanford is not involved and her onc at UCSF where trial is is on vacation. I think I’ll call the palliative team at Stanford. I’m sure they have a hotline.
I walked my Dad through Alzheimer’s last few years (he passed April of last year) so I know signs when end is near but would love for you to email me your list anyway. Is it specific to liver/bile duct cancer? Such a different experience with my sister who is so much younger than our Dad was.
Thanks again and God Bless you,
WillowAw, Willow, so sorry to read this. Have you talked with the ONC? It will not hurt anything to bring in Hospice and if your sister starts getting better you can always release them and get them back later if needed. Not sure how old her son is but it is a bad situation. On one hand I feel if the kids are involved they accept it better and just need to know she is not in pain. Perhaps even involve him in helping. I don’t know if you feel you need this but I have that list of things to look for and how to handle them when you feel the end is near. It seems to have helped quite a few people. But, first I would advise the ONC and if necessary he will order Hospice. My thoughts are with you.
My sisters dementia is dramatically increasing. Spoke with her husband and we both feel hospice is more appropriate than the trial. Difficult because Nicole wantEd to go to ur in trial and was actively recruited by Dr Katie Kelley at UCSF. The dementia may be due to high ammonia from liver failure but labs last week didn’t mention it and her mind was working better last week. Could it be all the narcotic pain meds (OxyContin and oxycodone)?. She was also diag w goiter/ so put on thyroid hormone last week. Edema of lower legs and feet; purpura (superficial bleeding under skin) on shins/lower legs. Swollen belly with itchy rash on it. Abdominal external met on skin met growing rapidly. This is where needle tract seeding of liver tumor wS caused by initial biopsies. OCD like behavior.. Think she is just trying to hang in to reality. Worried for her son to observe all this.
Willow…..sure agree with your arrrg…. Then the answer is clear – we, the members and non-members need to do what Melinda has been able to accomplish – we need to start fighting the State Rulings.
Perhaps Melinda can share with us the process and the stages leading to success.
Thinking of you, dear Willow.
Hugs,
MarionFYI,
It’s wonderful that people like Melinda fought for clinical trial insurance coverage in her state. (State by state laws vary) but in California, the clinical trial mandated coverage laws only apply to trials IN YOUR INSURANCE NETWORK. Even though certain trials/therapies are not offered within a persons network.
On the bright side, if you go for a trial sponsored directly by the government (like trial Melinda is on), then insurance is not an issue. Get a good social worker and financial counselor at the facility you’re trying to get tx at.
Frustrated that UCSF doesn’t assign social workers to clinical trial pts, only to “regular” cancer patients. Was referred to a dozen different people and departments who end up bouncing me back to ones I’ve already spoken to… Just to get simple forms and answers to existing protocols for financial assistance. The main desk at the Early Phase Investigational department keeps saying “I’m just a scheduler who applies for the ins authorizations”, but she doesn’t know what an “access to Care Authorozation” is. Financial counselors expect the trial dept to know about this. The admin at clinical trial says “well its rare for anyone to agree to participate in a trial that’s out of their ins network, so that’s why we don’t know what an access to care authorization is”. Arrrrrg!
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