Survival…Please tell us your latest milestone

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  • #64644
    patti77
    Member
    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

    #64643
    patti77
    Member

    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

    #64642
    pcl1029
    Member

    Hi,
    As you know, I am not a doctor but a patient of ICCA for 44 months.
    Prior to my recurrence ,the CA19-9 monthly trend was trending upwards for 6 months but never higher than the normal range. As general observations suggested that increased CA19-9 is possibly associated with inflammation such as infection,bronchiolitis,emphysema and may be in patients with diabetes.
    (Clin Chem Lab Med 2009;47(6):750-754).
    However, in a study of 208 patients using an absolute CA19-9 level of 129 , shown a sensitivity,specificity,positive and negative predictive value of 78,98,56 and 99% for cholangiocarcinoma.(uptodate.com,literature review, June,2012). In short, CA19-9>129 may be indicative of CCA.
    I have read all your posted messages and as a patient suffer the same disease as your brother,Bruce, I truly understand what he has been through. I hope the team of good doctors/friends that he has will find a way to treat him beyond what had been said in the medical articles. Have the team of doctors ever consider using the targeted agents to treat your brother Bruce?
    God bless.

    #64641
    marions
    Moderator

    Patty….it is the trend they watch for. A continuous upward trend and other symptoms may indicate (I must emphasize “may”) disease progression.
    CA 19-9 are pretty fickle and can respond to numerous biological happenings (infections, etc.) And, as you know, on it’s own these tumor markers are not of much value.
    Hugs,
    Marion

    #64640
    patti77
    Member

    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.

    #64639
    lainy
    Member

    Dear Zonia, I am so very happy to read these GOOD posts at Thanksgiving time. Yippee for Mom’s good scan! There is nothing to tie diet to CC, surgery is the very best option. But we have also had members who have had success with Chemo as well. Everyone is different and new things are popping out all the time. Just have great attitudes and be strong as that is a win win situation. Have a wonderful Thanksgiving and keep us posted on Mom’s progress.

    #64638
    mommysgirl
    Member

    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.

    #64637
    lisacraine
    Participant

    Eli, this is fantastic news. I am so happy for both of you. I will pray for continued clean scans and good numbers…..go celebrate !
    Hugs, Lisa

    #64636
    wallsm1
    Member

    Eli,

    Congratulations!! So happy for you both!

    Best wishes,

    Susie

    #64635
    lainy
    Member

    Dear Eli & Marina, this is just the bestest news! Yea and a big yippee! Great to hear this and looking forward to more great posts like this one! YES!

    #64634
    Eli
    Participant

    My wife, Marina, had her regular CT scan last Friday. We got the news today that the scan was clean! CA19-9 was normal too.

    We are 16 months since resection and 18 months since Marina’s CC symptoms first showed up.

    BTW, Marina is thinking about taking the port out. She hasn’t decided yet.

    #64633
    dianne-n
    Member

    Cancer free since my resection at Mayo on January 5, 2010! The only issues I’ve had since my resection are an incisional hernia that needed to be repaired, a “spot” in my lung (resected and benign), and mesenteric lymphadenopathy (biopsied and also benign). Although the lymph nodes are not getting smaller, they are also not getting larger….so far so good. So nice to read the other good news in this topic!

    #64632
    tiff1496
    Member

    1 year today. Waiting for a liver transplant right now.

    #64631
    malc2073
    Member

    Thanks folks…I still start with the Good News page on here…and a thread such as this…but just great that you maintain your comforting responses to the Introductions page …. hope you appreciate how much it helps…

    #64630
    gavin
    Moderator

    Hi Malc,

    Great to see you round here again and congratulations on your 3 years! Superb news!! Sounds like it has been a very busy 3 years for you! I am sure that you are enjoying the 2 new grandkids and good luck to you if you do a 10k run!

    Best wishes,

    Gavin

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