December 1, 2014 at 4:34 am #70614mbachiniModerator
I am so sorry for the loss of your mother….as a fighter of this disease …my greatest fear is the hurt and pain it would cause my children if I were to die. So my heart goes out to you. I admire the faith and positive attitude your mother had and I admire the way you portrayed that for all of us. My prayers go out to you for strength, peace and comfort and for the joy of your mother’s memories to fill your mind and heart…Blessings to you.
MelindaNovember 28, 2014 at 2:47 am #70613middlesister1Moderator
Stephanie, My heart goes out to you and I am sorry for your loss. It is so generous of you to share your Mom’s history to help others. It is greatly appreciated.
CatherineNovember 27, 2014 at 10:37 pm #70612darlaParticipant
I am so sorry to hear of the loss or your mom. Yes, the pain is there and nothing anyone says can make it better, but please do try to take some comfort in the fact that at least for her the fight is over and she is no longer going through all the pain and suffering. She truly will always be with you in your heart and all the wonderful memories you have of her and in time those memories will help your heart start to heal. It is a long and gradual process and it never truly goes away, but it will slow begin to get better. You and your family have my heartfelt sympathy at this very sad and trying time.
Love & Hugs,
DarlaNovember 27, 2014 at 6:54 pm #70611lainyParticipant
Stephanie I am so sorry to hear of your Mother’s Passing. The hurt eventually gets a little softer and really the good times and memories begin to take over.
Those we love must someday pass beyond our present sight…
They leave us and the world we know without their radiant light.
But we know that like a candle their lovely light will shine
To brighten up another place more perfect…more divine.
And in the realm of Heaven where they shine so warm and bright,
Our loved ones live forevermore in God’s eternal light.November 27, 2014 at 6:53 pm #70610iowagirlMember
First, I’m so sorry your mom has lost her war with CC. I want to put my arms around you and hug you until everything gets better for you, if it could. The pain you feel right now, will eventually lessen, but honestly, it will never really go away entirely. There will always be days or events that you will find yourself wishing she could be here with you. But, I promise, you will find strength to get through the days, the weeks and the years, and eventually, look back and smile now and then.
Thank you for posting your mom’s history with CC treatment. I know that there will be many people who access that post in years to come, looking for information
I am headed to Mayo Clinic this afternoon..yes, Thanksgiving Day, for a 3 month consult, blood tests and CT starting at 6:50 Friday morning, and am going to try to carry your mother’s positive spirit with me. You see..she has helped someone already…..I really needed to see your post today and feel your mom’s strength.
Julie t.November 27, 2014 at 6:02 pm #70609
Has it really been a year since my last post? Wow…
Well, the unfortunate news from me here today is that my beloved mother died last Saturday (1115/2014). She was so strong and positive throughout her 20-month battle with this atrocious disease, but the widespread metastasis produced multiple systems failure which her precious body couldn’t combat any longer. My heart is broken. Today will be the first of many Thanksgivings without her, and her 60th birthday would have been 1 week from today.
The usual things people say to me are that at least she’s no longer suffering; now she’s at peace; and she’ll always be with me…all this is true and encouraging, but the pain of her loss is still very acute.
For what it may be worth to future readers of this post, here’s a brief history of my mom’s process. She wanted her “case” to be used to help support the medical community, others who might learn from her experience at all, and people making decisions about treatment options. I’m relaying this in that spirit.
*March 22, 2013: Diagnosed with Stage IV cholangiocarcinoma; mets to liver, lung, bone and lymph
*April, 2013: Neurosurgery procedure to remove diseased C4 vertebrae, replaced with titanium cage
*May-Aug, 2013: Radiation on spine to treat bone mets to thoracic and lumbar regions
*May-Jul, 2013: Started first chemo: Gem/CIS — completed 6+ rounds; minor liver tumor shrinkage.
*Jun-Sep, 2013: Chemo-embolization and ablation treatments.
*Aug-Sep, 2013: Started second chemo: 5-FU…also completed 6+ rounds. Didn’t respond well.
*Sep-Nov, 2013: Started third chemo: FOLFOX…toughest one yet. Lung mets became aggressive.
*Nov, 2013: First Y-90 procedure. Results showed dramatic reduction in tumor markers.
*Jan, 2014: Second Y-90 procedure. Sustained liver tumor shrinkage but caused stomach perforation.
*Jun-Jul, 2014: Prescribed Tarceva for continued tumor shrinkage. Lungs worsened.
*Jul, 2014: Began routine paracentesis for abdominal ascites drainage. Averaged 3 Liters, 1-2x week.
*Jul-Sep, 2014: Prescribed Irinotecan to combat lung mets. Didn’t respond well. Declined quickly.
*Oct-Nov, 2014: Constant coughing from lung fluid buildup. Thoracentesis drained 750mL 1x/week.
*Oct, 2014: Took a break from treatments/procedures to contemplate next move.
*Nov, 2014: Met with dr. to discuss immunotherapy. Not proven for CC, only melanoma. $75k/trtmt
*Nov, 2014: Admitted to ER with shortness of breath; oxygen levels 94 (out of 100). Put on O2.
*Nov 9, 2014: Declined to pursue further treatments and elected hospice care (in-home).
*Nov 14, 2014: Hospice was approved and came in to provide a hospital bed, morphine, etc.
*Nov 15, 2014: Died at home, surrounded by her family. She was 59.
I’ve left out the many, many MRI’s, x-rays, CT scans, blood transfusions, blood tests, and visits to specialists, hospital and ER teams. Often her hemoglobin was so low that she required blood transfusions in order to qualify for her next round of chemo. She was greatly fatigued, but never lost optimism or hope right up to the very end. Mind-body connection was always positive and strong. She was a devoutly faith-filled Catholic and this sustained her. She prayed daily for all those afflicted with cancer and chronic pain. She ate very carefully…was essentially on a vegan diet (no meat, soy, dairy, gluten, sugar, or alcohol). She also juiced regularly.
Her care team was primarily supported by:
-Dr. Saeed Sadeghi (Hematology Oncology, UCLA)
-Dr. Lisa Chaiken (Radiation Oncology, Providence St. John’s Health Center)
-Dr. Edward Lee (Interventional Radiology, UCLA)
-Dr. Antoni Ribas (Immunotherapy, UCLA)
-Dr. Timothy Weiss (Hospice/Palliative Medicine, UCLA)
-Dr. David Wallenstein (Hospice/Palliative/Pain Management, UCLA)
-Skirball Hospice & Palliative Medicine
If there are any detailed questions or further inquiries that may assist others, I would be happy to share anything that might be of help.
I wish all those who struggle with this terrible illness, and those who love and care for those afflicted, the most heartfelt love, strength, courage, and fearlessness as you pursue your own treatment options and work tirelessly for a cure.
~StephanieNovember 18, 2013 at 2:21 am #70608kvollandParticipant
Sounds like things are going so well for your mother. Wising her – and you – all the best. And the words resection are the best in the world to hear with this disease. We will all be keeping out fingers crossed for February.
KrisVNovember 18, 2013 at 1:48 am #70607thebompie4Member
Good to hear— i especially liked your update on the Y 90 as my
husband is undergoing this on Tuesday of this week!
Good to hear about good results.
He had his mapping two weeks ago and all went well there.
Thanks for sharing this information!
dorienNovember 17, 2013 at 11:56 pm #70606RandiParticipant
So happy to hear about the outcome of your mother’s treatment. While it sounds like she had her fair share of discomfort (as the doctors call it!), the outcome sounds so positive! Congrats!! keep the good news coming.
-Randi-November 17, 2013 at 11:36 pm #70605lainyParticipant
Dear Aticon I am over the moon and then some with how everything has been going now for your Mom. What absolutely great news. When you look for a wig be sure to check out some major Cancer Hospitals as many have Gift Shoppes for Cancer Patients and have just adorable wigs. I bought one a year ago from a professional place and never likes it. Cost me 300.00. Finally gave it away and went to MDA here and got an adorable wig for 60.00. How wonderful of you to have a Fundraiser and 2,500.00 is not to be sneezed at. We sure can use that, thank you so much. I would say the way things are going your Mom is going to have a wonderful Holiday season. I just need to give Mom a huge YIPPEE!November 17, 2013 at 11:12 pm #70604
Hi everyone — just thought I’d give another update on my mom’s condition, since I haven’t posted in awhile.
Chemo regimen of FOLFOX continues. She tolerates it reasonably well, but it makes her very cold and very fatigued. A walk around the block with the dog zaps all her energy reserves. With every other chemo infusion she requires a 10% strength reduction because of low hemoglobin, and she has had 1 blood transfusion due to low levels. My sister (blood type match) has begun banking blood. Mom has begun losing her hair; not in chunks, but it’s very thin now in comparison to her norm. Her doctor gave her a prescription for a human hair wig (couple thousand dollars! yikes!). I’m planning to get it for her birthday. Due to almost constant digestive distress, she’s on a completely vegan and gluten free diet now (no meat, dairy, soy, or gluten) and she juices regularly. Weight appears low to me (she was already very thin to begin with), but does not appear visually jaundiced or yellow, so that’s reassuring.
At this time the most apparent “symptom” is really her ever-increasing abdomen. Fearing this was ascites (fluid build-up) which would need to be drained, and which would be symptomatic of the early stages of organ failure, she received scans to determine how much fluid existed. These scans showed that there’s virtually *no* fluid, but it’s instead her extrahepatic tumor that has grown to 10cm in diameter (larger than an adult fist; about the side of a grapefruit) and is causing her belly to protrude. On her already slight frame, this makes her appear about 4 months pregnant. About a month ago, the weight of the tumor caused her stomach to collapse. As a result, she no longer feels hunger pangs, and needs to remember to eat at traditional times. She also gets full very quickly since her stomach is so compressed by the tumor.
So the question became, what to do about this tumor? It’s huge and growing. Her interventional radiologist suggested a procedure called Y90. This is apparently a liver cancer therapy that consists of millions of small glass beads containing radioactive yttrium-90 being injected through a catheter into sites that are immediately local to tumor growth. The beads emit localized radiation, which is more effective and more targeted than low-dose external radiation therapy. The beads kill the tumor tissue, while preserving the healthy liver tissue. It’s pretty genius, really.
The last couple of months have been spent battling with the insurance company over coverage denials for the essential Y-90 treatment that was recommended by her medical team (interventional radiologists, nuclear medicine, primary oncologist, etc.). Talk about stress! At long last (and on the 3rd and final appeal attempt!) she was finally approved for the Y90 treatment (hooray!). Preparation required her to be off chemo for at least 4 weeks leading up to the treatment date. During this time she had various tests and scans to “map” the blood vessel pathway which the millions of small glass beads containing radioactive yttrium-90 would be injected into. Blood vessels leading to her pancreas and stomach were cauterized to prevent the beads from traveling there. A “dress rehearsal” procedure was done 2 weeks ago where, after many hours of blood vessel mapping, beads containing contrasting dye were injected along the pre-determined pathways and deposited near the intended tumor sites. She was then scanned to see if the beads were positioned properly and where they needed to be. Everything looked correct, so the “real” procedure was scheduled for 11/14 (last Thursday). It was a success! The medical team advised that the procedure went “text book” well, and they positioned the radioactive beads exactly where they intended to. This is an outpatient procedure, and pain was managed with Versed. Soreness from the catheterization (entry is up through the main artery in the leg/groin area) lasts for about 2 weeks, so she’s still quite sore, but has already observed belly size reduction due to the necrosis of the tumor tissue. This is of course wonderful news; the treatment appears to be working so far. The tumor tissue is supposed to continue dying off over the next few months, and she’ll be scheduled for resection surgery around February. (She was determined to be unresectable a few months ago, so this is truly meaningful progress).
Another update: the results of her genetic sequencing report indicate that she has NO abnormalities among the current ‘known’ mutation pathways. However, she’s still going to be tested for Lynch Syndrome to rule out a genetic predisposition to colorectal and/or GI cancers, given her father’s diagnosis of colon cancer at age 57 which brought about his death at age 59 1/2 (his had mets to liver and lung). Will advise more on that once the results are in.
I held a fundraiser at work and we raised $2,500 for The Cholangiocarcinoma Foundation, which was great for bringing awareness to bile duct cancer. The mother of one of my colleagues was also recently diagnosed with this very disease, which certainly seems to suggest that incidences are rising.
My mother’s attitude remains resolute, happy, positive, upbeat, grateful, thankful, calm, and hopeful. If attitude is everything, she’s nailing it!
Will post again once I have more to say; this about brings everything current with my family’s situation.
Hang in there, everyone!July 29, 2013 at 11:34 am #70603ghannam80Member
I hope all the best for your mother as I got the same situation with my mother , she is 58 years old too and she never visited the hospital before except for giving birth to 6 children until mid of past June where we took her to ER thinking the yellow skin is caused by gallstones.
Same to you I was shocked for the diagnosis and then about limited options we got although for the past two decades I have heard a lot about progress in the treatment of cancer but it seems companies keep concentrating on those with higher percentage of patients.
I keep praying to god to keep my mom alive until some miracle could happen and some new development in the treatment of this disease could evolve for the best of humanity and you should not loose the hope because compared to my mom who do not have the opportunity to join clinical trials in small country like Jordan you could do that in the states.Y’all are in my payers. Take care.July 26, 2013 at 2:24 am #70602danna0325Participant
There have been people who are stage IV and have still ended up with transplants so don’t lose hope. I too, go to MD Anderson but have a different Dr. than Javle but am currently trying to switch to him. I feel like he would be way more aggressive in treatment than the one I have. My current Dr. Is just doing the whole palliative care right now and that’s not good enough for me. I have a son to raise. Y’all are in my payers. Take care.July 25, 2013 at 4:22 pm #70601
FOLFOX regimen is going ok. She’s tolerating it MUCH better than Gem/Cis. Have been told FOLFOX is the new standard of treatment for CC. Far fewer side effects. Radiation is going ok too – just some esophageal soreness from the pass-thru on the sternum treatment. Continued abdominal distension which looks odd pretty much continuously. Food cravings are limited just to comfort foods, soup mostly. There was a chance this radiation round could be reduced from 15 treatments to 10, but new X-rays taken last week prompted the full 15 to be taken after all.
The USC doctor asked for blood tests showing tumor markers, which hadn’t been ordered since original diagnosis in late March. At that time, tumor markers were 248. Bloodwork last week showed reduced tumor markers down to 134 so clearly something has been working, though its unclear if that’s a result of the neurosurgery or an indicator of the chemo efficacy.
Quality of life is pretty much as normal right now; days are just peppered with dr. and treatment appointments. No real prompt to stop aggressively pursuing treatment at this point. She still has strength, hope, optimism and a great attitude. As do we.July 15, 2013 at 4:44 pm #70600pcl1029Member
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