patti77
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mommysgirl wrote:Hello everyone. I’m so excited for each and every one of you and to read your milestones is encouraging. My mom was diagnosed with CC July 2012 and is doing good. She’s getting ready to start her 4th cycle of gem/cis. Her oncologist even told us her CT from 3 weeks ago was better than he had expected. For this our entire family is grateful. I was hoping some of you might be able to also share what helped or is helping you get and remain either symptom or cancer free? Was it a change in diet, Whipple, resection? We continue to pray for the day she will be told she is cancer free.
Lots of love, Zonia.
Hi Zonia!Here is a post that I started a while ago which does list some of things that we have done to help Bruce fight this disease. I believe that there is no magic silver bullet, but that a multi-prong attack on all fronts does help.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=6261
Good luck and God Bless!!!
Patti
Hi Marion and PCL…thank you both for the thoughtful responses. It has been a very wild past three months, and I have not been as good at keep my various websites, blogs and threads up to date.
Bruce is now over 3 years since his diagnosis of cc. As you might remember, at the time of diagnosis, Bruce was told that he had 4 months and was pronounced inoperable. Being who he is (the quintessential fighter) he found someone to operate and here is he. His cc came back in August and he has had multiple procedures and chemo’s to eradicate the tumors: cyber-knife/targeted radiation; systemic gemzar/cisplatin; chemoembolization (chemo delivered directly into liver); and then a new chemo – Erbitux. His body was basically assaulted. It was so hard to watch him so weak and suffering from the effects of the treatments.
His platelets dropped, causing his exhaustion and weakness, and he has fluid retention (ascites) in his abdomen. The fluid is caused by low albumin levels, which in turn causes the capillaries to leak fluid into surrounding tissues. All of the symptoms that Bruce is experiencing have been caused, we believe, by the chemo (and perhaps along with the radiation.) His platelets actually dropped to 10 (should be 200) – causing him to require 2 platelet transfusions.
We stopped the chemo treatments in order to allow his body to heal & strengthen – which is now happening. His platelets, as of this past week, are 173 – and his fluid levels have dropped some. His blood work was actually remarkably normal and he is beginning to sound like his normal self.
Bruce’s biggest concern right now is that his CA199 spiked from the normal range (where it had been for most of the year) to 135. This past week, it dropped to 125. They drew some of the fluid from his abdomen to test for cancer cells, and we are awaiting to hear that news on Monday/Tuesday. The last time they tested the fluid (a month ago), it was cancer-free.
Hence, I was hoping to find out where others’ CA199 markers were during their long stretches of beating back this disease. It might ease Bruce’s mind a bit to know that 125 is not a horrible number.
I cannot begin to thank you all enough for this wonderful website, discussion board, shared knowledge and support…it has been a bright light in our uncharted navigation through very rough seas! THANK YOU THANK YOU THANK YOU!!!!
With love always,
Patti
Hi folks! Just wanted to ask a question of those who have been surviving cc for a few years. Where is your CA199 marker? Has it been in normal range (0 – 33) or high? My brother Bruce has now been battling cc for over 3 years, with his CA199 in normal range for almost a year. He went through a very rough stretch the past 3 months but is doing better this week. His CA199 took a leap about a month ago and is now around 127 (down from 135 last week) – but he has not had chemo in weeks. Just wondering if we are hoping that cc can be treated more as a chronic disease, rather than a fatal one, whether a higher CA199 matters. Thought that I would check in to see what others think.
Dear srengle,
You have my deepest sympathy for your loss. You are right: this disease is devastating… Please take comfort in knowing that he went peacefully with your family surrounding him…and know that you have many here on this “board” who share your sorrow.
May God bless you with excellent memories and healing of your heart.
Love,
Patti
PS — Bruce is also meeting with his team of doctors in Pittsburgh this week to review options going forward as they see it. He spent quite a bit of time yesterday talking to his surgeon (Yes, on a Sunday! – Dr. Marsh is an incredible, compassionate and passionate human being…extremely dedicated!). Bruce has been off of the chemo (gemzar/cisplatin) since July and has had some reoccurrence of tumors in his liver along with some FDG avid areas in his abdomen. Dr. Marsh is proposing a different approach which we will need to review with Dr. Marks (Bruce’s oncologist). We also have been consulting with Dr. Sun, who is an expert in CC. We will be holding a very intense family pow-wow once we have all data from the Pittsburgh team and CTCA.
Although my brother Bruce is receiving excellent care from his team of doctors in Pittsburgh, and although he is still with us after more than 3 years in the battle (having been told initially that he only had 4 – 6 months to live), we are going to be exploring CTCA in Philadelphia for options going forward. Why? Because after all of this time, we do believe that there is still a missing piece of “medical oversight” – which looks at Bruce’s body & mind systemically, integratively and holistically. And because we believe that we must be constantly vigilant and constantly assessing all options.
Here is the information on the integrative approach from their website: “At Cancer Treatment Centers of America (CTCA), integrative cancer treatment isn’t a buzzword or a recent trend. It’s what we’ve provided to our patients since 1988.
Unlike other hospitals and treatment facilities, at CTCA you will find a comprehensive and integrative approach to fighting cancer—all under one roof. Our integrative cancer treatment expands the boundaries of conventional care by bringing together traditional tools for fighting cancer, such as surgery, radiation,chemotherapy, and immunotherapy, with supportive therapies, including nutritional support, naturopathic medicine, mind-body medicine, oncology rehabilitation, pain management, and spiritual support.We are committed to treating all of you—not just your disease—using leading-edge medical technology and innovative medical therapies. With our unique approach, we aim to fight your cancer on all fronts, and with every available resource. Your care team members collaborate on your treatment by sharing essential information and collectively determining the best treatment plan for you.”
Bruce plans to call them today. I will let you all know what we discover along the way.
Best wishes, prayers and love to all of you in your own battles and searches for answers.
God bless!
David and Lisa…this is wonderful, fabulous and joyous news! Thank you for sharing! We will continue with prayers for Lisa’s health. Wishing you both all of our Lord’s blessings…
Patti
Thanks for the comments, Lainy and Lisa! Bruce has had a very rough past month…he has been exhausted (could hardly lift his head), had chills, fevers and some pain. Also, some “distention” in his abdomen. He has been around the barn with his doctors and in the hospital…everyone looking for an infection and not finding it. The only news we did come up with was that his hemoglobin levels were low which contributed to the exhaustion. They did give him a blood transfusion and we added more iron to his diet. He has also had some reoccurance: (small) tumor in his liver and a lymph node that “looked like it might be cc” so they have been radiating those spots. Because of low platelets, Bruce has been unable to take chemo (gemzar/cisplatin) which has been excellent at reducing tumors or keeping at bay. Bruce’s CA199 has been around 10-14 for the last several months which is great. Bruce had his CA199 checked last week (worried, as he has not been on chemo) and it has moved up to 33. Still…it is at the high-end of the normal range.
After meeting with Dr. Sun, he informed Bruce that his distention is being caused by low albumen levels which cause fluid to build up in cells. He wants him to take a protein powder to raise those levels and add more protein to diet. He also told Bruce that the chills & fever are what he believes to be cholangitis…which we had suspected…but the other doctors had ruled out. He said that it was hard to diagnose the cholangitis (I believe these are his words) because it was “contained” in the liver. He wants Bruce to complete the radiation and them will start him on a new chemo regimen…which I will provide more details when I have them. The best news of the day was that he “had answers” for my brother on why he felt so sick…and my brother sounds like a “new man.” He just needed a good dose of hope and Dr. Sun provided it. I will write more when I know more. On with the roller coaster ride…
Love and God bless!
I believe that I have posted here earlier that my brother Bruce, in Pittsburgh PA, has been blessed with the following amazing life-saving doctors:
GP: Dr. Jim Gleason (found Bruce’s cancer initially)
Oncologist: Dr. Stanley Marks
Surgeon: Dr. Wallace MarshToday, Bruce had the wonderful fortune of meeting with Dr. Weijing Sun at UPMC in Pittsburgh (Dr. Sun was at U. Penn in Philly for 15 years.) – Dr. Sun is a specialist in CC and was able, after meeting with Bruce for several hours, to provide hope and a plan for going forward.
(Again, Bruce was diagnosed 3 years ago with CC and is still fighting the good fight.)
Hi Marion!
Thank you for your great suggestions! I would be happy to start a new topic in the Good News section. I will title it: Survival…Please tell us your latest milestone.
I would also be happy to add the information from the BruceHaney.org site to the blog section as you suggested…especially if it is helpful to anyone. Thank you for mentioning that and your kind words.
I must say, once again, how wonderful it is to have this website available for those of us looking for answers for our loved ones or ourselves. Thank you, Lainy and the team for keeping this going…
God bless,
Patti
WOOOO HOOOO!!! Congratulations Sue!!! Wonderful, wonderful news!
Thank you for sharing…and for being a beacon for everyone else who is fighting this fight!
God bless…
Patti
Thanks Eli & Gavin for the clarifying information! Much appreciated! I did receive this information from my youngest brother who was researching this vaccine, as well:
“I looked on clinicaltrials.gov and typed in MUC1. I didn’t see any cholangio trials, but did find a trial at Pitt that is being performed at Pitt for people with advanced colon polyps.
http://www.clinicaltrials.gov/ct2/show/NCT00773097?term=MUC1&rank=2
I just talked to the contact person for that trial. She said that Bruce would probably not be eligible for that trial but should talk to Dr. Marks about it, since there may be other trials going on.”
Thanks again for your quick replies and additional data!
Best always,
Patti
Hi Jim,
Just read this thread….sorry that I have been AWOL for awhile. I just posted that this disease (for most, it appears) is a lot like the carnival game “Whack-A-Mole” and you just have to keep pounding when it pops back up again.
I am praying for your continued strength and courage in this battle…
I just heard of a recent vaccine for cancer that was developed in Tel Aviv and is now in clinical trial:
It sounds very promising for those who have been battling cancer repeatedly.
Please continue to let us know how you are doing and if there is anything we can do to help.
Prayers continuing…
Patti
