Nicole passed away last night while we were all sleeping. Sometime around 4am we guess. She looks beautifully peaceful.
Out w my nephew and older sis. My nephew is very sad but we know he has huge support and will be ok.
Love Sara

Thank you.

Thank you Cathy, Lainey and Pam.
Pam, I've thought of your intense ordeal in the last days with Lauren often. It was very different from hospice in that everything under the sun was tried to keep her with us here in the earthly realm. Hope you are doing ok and at peace in your heart.

Fabulous... Congratulations, Kathy! So glad you had a big fun European adventure this summer. Really nice to hear good news!

Thank you, Julie, Marion, Lainey, Darla and Catherine. It's 3:44am and she is still with us....sleeping soundly though snoring ...Cheney-stokes. Hospice nurse came late last night when I was out for a late dinner as my brother in law panicked a bit. My sis and I  had given the methadone (long acting pain med) and morphine (short acting breakthrough med) too close together and she started shaking and breathing super fast/noisy.  My two bro in laws and nephew were scared so called the hospice out. By the time the nurse came, Nicole  was resting comfortably again so she just reassured us and said to give haldol every 4 hours or as needed (new med to replace lorazepam).  Feel bad having given too much too close together. I feel like there are similarities to our Dads passing last year but he was in assisted living so I had a lot more help with the admin of meds, changing sheets/clothes etc. still took daily management but it was as if I had a team helping. Now we are a small team with a young kid watching and helping too with little things. He is so good about showing his affection to his Mom, though due to her frailty, mainly can only kiss her hand or head. He also gives frequent big cheerful hugs to all of us throughout the day and then goes about his business.
When the pain meds wear off, Nicole has a few brief moments of wakefulness but can't speak. We jump on the opportunity to tell her we love her, wash her with the moist wipes, clean her mouth with the sponge sticks etc. She seems comforted but soon tired. We also read cards to her that people have sent.
It's heavy on my heart that my sister and bro in law made it clear early on they don't want a lot of visitors, tears or "drama" during this stage, so two of my sisters are essentially not "allowed" to come much at all. They are naturally sad. Our brother is back in NYC and can't come again till the memorial. He flew out a couple of times this year for extended visits to spend time with the family and recently drove his motorcycle across the country, visited briefly but had to get back to work. 
Well, I'd better try to sleep some more. Take care and thanks for your support.

Many of you know me as Willow. But my real name is Sara Denn. I live in Vacaville CA. I am
Just updating that I made it through 3 heartbreaking days when I had to be away again from my precious sister in order to work (3 hours away) . I Arrived last night to find my sister Nicole that much closer to heaven. She still has moments of lucidity but they are fewer now. Her husband has been amazing, patient and so loving with her. There is no outside help for hands on caregiving, though hospice is guiding us and adjusting meds. I Slept in my nephews bed beside her and staying here at her home for the duration. Her respiration a are only about 3-4 per minute so I keep thinking she has stopped breathing but then she takes another breath. Our Mom spent a few hours here today as well as my eldest sister while I took my nephew out for a break to Barnes and Noble.
Nicole is my first best friend as we are less than 2 years apart and were children #4 and #5 of 6 from a large Catholic family (5 girls and one boy).  I just turned 50 and she would be 52 in mid August. As kids, We made up  lots of skits and dances, shared sleepover parties, played Indians, explored, were Pom Pom girls in high school (cheer song girls) and have a special bond that seemed to fade in adulthood till she was diagnosed two years ago. Suddenly, our closeness and fierce bond came back in focus and I have not been able to let her fight this cancer alone. Very selective of who she "lets in", she  gave me the true honor of being the one to help her through every bit of her journey. She has shown me what real courage and grace are. She is a graphic designer and talented freelance fine artist as well. Very creative, quiet and private in contrast to me (scientific, outdoorsy, outgoing). We are so different yet our bond runs so deep.
I'm strong when I have to be (in front of others) but a mess when alone. Emotions all over the map.  Please send thoughts and prayers for her peaceful passing soon. Also for strength and comfort for all of us left behind. Especially for her husband and young son (he is ten and aware of what is happening and is doing pretty well).  Priest is coming tomorrow at 5pm but I will be surprised if she makes it that long. Meanwhile, she is sleeping deeply.
Love
Sara

7

(13 replies, posted in Good News / What's Working)

That is SO great to hear, Porter!!! You deserve a fresh start free from CC! I know they are always cautious about saying people are "in remission" but I wouldn't be surprised at all that you are is great shape after all you went through over the past year.  I share you Tears of joy. Never ever feel guilty sharing good news!
Love
Sara (Willow)

Adding my Feliz  cumpleanos to a remarkable woman!

9

(75 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)

16

(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.

22

(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