You are not logged in. Please login or register.
La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Due to recent news about new cancer treatments, CCF is gathering information about your experience with genetic testing of your tumor. Whether you have or have not
had any genetic testing it is important to answer the questions to help us make progress in cancer research.
Take the Survey
Search options (Page 1 of 31)
Posts found: 1 to 25 of 767
Awesome, Pat! Nine years! Your mentoring is commendable even if sometimes heartbreaking . You're remarkable!
Scotland has some gorgeous natural beauty., but wild weather!
Saw a crazy (dangerous) mountain bike video done somewhere in Scotland that blew me away. . Do you hike? I do, often. Went today in fact, in the emerald green rolling hills to two radio towers. It was a balmy 60 degrees! Been off this cc site for months... Still trying to distance from the cc and just "be". Unlike Lainey, we love the snow and skiing... Been to the mountains near Lake Tahoe a few times and doing the snow dance here in CA. Cheers, Sara
You, Andrea and your boys have been in my thoughts and prayers daily. While I do not know what it is like to walk a spouse through cancer treatment, I do understand how difficult it is to keep a brave face and positive attitude going with devastating new developments like the referred pain, side effects of pain meds and now the malignant ascites. I can't put into words the PROFOUND desire to take your beautiful wife's suffering away but I do understand that feeling as I had that kind of love for my sister, Nicole. You are a beautiful example of a husband and father. From the beginning, you have provided Andrea with what she needs the most: love, physical comfort and emotional support (as well as logistical support). It must have been very difficult to attend my sisters memorial but you and Andrea gave of yourself and came.
This is just another example of your selfless love of Andrea. Our family sure appreciated your presence as well.
Your sound treatment decisions made together with Andrea and based on extensive, research help not only Andrea but all those in the CC family because you chose to share them here. Yet, as I understand all too well, the challenge with limited options make it feel sometimes like you are flying by the seat of your pants and managing things literally one day at a time. I know I am "preaching to the choir" with all this but really just want you to know you are not alone. I'm hoping the current chemo will knock the cc down and with that reduce the ascites. Is Andrea on a diuretic? (Those can have side effects like dehydration/electrolyte imbalance) but sometimes helpful. Also, I pray the genetic testing can provide more tx options soon. Are you looking at the PDL immunotherapy trial at UCSF? Please feel free to call if you want to ask about it or any other questions.
I too am grateful for your post. In addition to meeting him on this blog, I had the privilege to meet Percy a couple of times at cancer conferences, hear him speak to top CC MD's, shared a lovely dinner with him and always felt his loving kindness.those who posted today about his passing have spoken the truth... Your father was a generous man, sharing his time and talent to help others. His posts are here to continue helping others seeking support with cc and his memory will be cherished. God bless you and yours during this sad time.
Thank you for sharing this story about your friend. You really are an inspiration in so many ways. I'm sure you are a big comfort to her during a horrible turn of events in her life. Your ability to express honest feelings and thoughts is priceless.
Hope you are enjoying your new job! I'm keeping busy with my teens and work, but still reeling from the loss of my sister. The pain is so deep and hits at the most random times.. sometimes at work when a certain song comes on or I see a patient whose health is declining. Like you, I'm trying to focus on living life to the fullest and counting my blessings. That helps.
They have limited resources but can help w/ some travel and hotel expenses or a little of medical (not usually medical) exp. Based in the CA Bay Area.
Congratulations on finishing chemo, Julie!
I am so sorry for the devastating loss of your brother, Mark. My heRt goes out to you and I relate to your loss.
Best to you, Kris, at your new job!
Thank you all for your comforting words. So glad to hear from you, Percy.
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.
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.
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!
Wonderful news...thanks fir sharing, Matt!
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.
Posts found: 1 to 25 of 767