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(72 replies, posted in Introductions!)

Wonderful news...thanks fir sharing, Matt!

Thank you everybody.

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.

What a fabulous looking fundraiser!  It's in my neck of the woods, too. I will have to play it by ear as for attending, though.  I'm sure if Gavin was coming in full Scottish regalia, I would have no choice but to attend!

After 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.

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.

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)

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(30 replies, posted in Introductions!)

I'm do sorry for you and your Mom. I can relate to bring a realist but that doesnt make this any easier. I'm glad your Mom is comfortable and stabilizing.  Take care
Willow

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,
Willow

In section where order of treatment is asked, survey Only let's you list chemo once when ordering treatments. My sister had chemo 4 times with couple other treatments in between, for example, but there is not a way to list different chemos as first, third. fourth and sixth treatment.

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.

FYI,
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!

Thanks everyone for your support. We really need it now!  Friday was her first infusion. My sister is so ill and has new signs and symptoms of advanced cancer almost daily, so I am a nervous wreck more and more.
Judy, the trial is the MK/3745 anti PDL/PDL1 trial at UCSF for solid tumors. Yes, tissue must be tested to see if tumor has the PDL mutation. About half if CC cancers carry that mutation.
Nicole's first infusion went well though she had nausea oping this drug slows the cancer and brings relief.  on ride home and diarrhea soon after. Fatigue too, though it's hard to tell what is causing that as so many things do at this point.  By yesterday (2 days after infusion), she had de van itchy rash all over her belly. Hoping this is not an allergic reaction but more of a sign her immune system is waking up to fight the CC. Will talk to the dr today.
She will be able to have labs and scans at Stanford and the trial mandated dr visits /infusions at UCSF. Infusions every other week. Scans every 8 weeks.
Her 10 year old son spent the weekend with us (2 hours away) and it was a precious time for me. Gave my sister and brother in law  time to rest and catch their breath.

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(5 replies, posted in General Discussion)

Patzel,
My sister had to cancel her MRgHIFU (magnetic resonance guided high intensity focused ultrasound) treatment of her rib bone met in order to get going on the PDL1 clinical trial at UCSF this week.  Otherwise, it would have delayed her a month and she probably would have lost her spot on the trial. 
She also had regular external beam radiation on her rib bone met in the spring and that helped quiet it down for a while.
Willow

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(20 replies, posted in Introductions!)

Rob,
Welcome and congratulations on your recovery from resection and your "clean bill of health"!  Keep us posted on the fun ways you're enjoying life and always feel free to come to this site... it has helped me and my family immensely.
Willow

Deborah,

I emailed you to let you know about my sister also starting the PDL1 trial at UCSF this week.  Would love to hear what your experience is and  how Don fares. 

We will be receiving some financial help from the Lazarex Cancer Foundation (out of Danville CA) to offset travel and medical expenses as even parking in SF adds up!  Please look for my email.

Sincerely,
Willow

That's good, Lainey.  Best wishes with your new regimen... you deserve a "normal" life!  I bet you can't wait to get off the Pred.
Willow

Officially, this immunotherapy trial is MK-3475
It is also known as PDL1 monoclonal antibody therapy. Programed Death Ligand (PDL)
takes cancer's "cloaking" mechanism away so your own immune system will recognize cancer as foreign and attack it.
Phase 1 Trial at UC San Francisco
Been tested at other sites and shown promise/effectiveness in other cancers with the same mutation, in particular in melanoma and non-small cell lung cancer.  Drug companies scrambling to be first to develop this drug and they want to see if it's effective in other cancers (with same PDL1 mutation).

It took over a month to get results from genetic mutation testing so better to be proactive if you're thinking of trying any of these targeted therapies in the future.  This delay could mean that she no longer qualifies based on the stability of her health/liver enzymes/platelets etc.
My sister had her labs today, will have her screening physical tomorrow and first infusion Friday, if she "passes" the screening labs/physical.   
Willow

Trish,

I agree. An MRI with contrast or some imaging more sophisticated than an ultrasound is warranted. Also, liver panel blood work should have been done all along. Be the squeaky wheel! My sisters only symptom was pain upper right under ribcage. Never had the jaundice, itching, etc.  Please let us know  when diagnosis is updated. Yes, cc is rare and odds are you don't have it but they MUST definitively rule it out...   Hepatocellular carcinoma is much less rare. Get to a specialist ASAP and if you don't think they're looking hard enough , get another opinion at a large research hospital.
Willow

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(9 replies, posted in In Remembrance)

Patricia,
I too would like to add my condolences on the loss of your brother Steve. How thoughtful you all were to read the passage he had circled. Glad this cc family could help you over the past 6 months. It's helped so many to share the burden and knowledge of this rare cancer. 
Willow

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(9 replies, posted in Thought for the Day)

Feliz cumpleanos, Kris!

Jason,
I'm truly sorry to hear of Andreas setback. Please let us know what the onc suggests at today's appt. keeping you and Andrea in my thoughts!
Willow

Google search...
Popped up pretty quickly...

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(7 replies, posted in General Discussion)

Jennifer,
It must be so hard losing your father less than two months from diagnosis. My thoughts and condolences are with you.
Willow

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(11 replies, posted in Introductions!)

Pat,
My sincere condolences on the loss of Your husband, Paul.
Willow