Eli

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  • in reply to: Intrahepatic biliary injuries associated with RFA #55439
    Eli
    Spectator

    Percy… let me respectfully disagree with your criticism of this study.

    PCL1029 wrote:
    it seems to me that the study is more concern about the damage of the bile ducts by RFA than the more positive results that RFA can provide to intrahepatic CCA patients like me.

    That was the explicit goal of the study. The benefits of RFA are well known. The data about injuries is limited. They wrote: “This study aimed to assess the incidence, prognosis and risk factors of intrahepatic biliary injury associated with radiofrequency ablation.

    PCL1029 wrote:
    Dose the study mean that bile duct cancer patient, like me, should not have RFA procedure because it will damage our bile ducts in the liver?

    No, the study doesn’t say anything like that. Their conclusion was: “The incidence of biliary injury was not frequent (1.8%). Through appropriate treatment, intrahepatic bile duct injuries seemed not affect the patients’ long-term survival.

    As a patient, how can you give an INFORMED consent if you don’t know the risks and their incidence rate?

    Before we signed the consent to do Whipple, the surgeon told us the % of patients who develop pancreatic leaks. Before we signed the consent to do 3D radiation, the radiation ONC cited the incidence rates of spinal injuries and compromised surgical connections. The numbers came out of studies similar to this one.

    Really, I don’t see anything controversial about this study.

    Eli
    Spectator

    Gosh, I just posted a link to an article. Look what I get in return. :) Thank you Lainy and Karen for your informative posts.

    My wife had microscopically positive margins after Whipple. CyberKnife is not an option to deal with margins. She did a course of conventional 3D radiation with concurrent 5-FU. She is currently in remission. I hope she doesn’t need CyberKnife… NEVER EVER.

    But since we are on the subject…

    Our radiation oncologist (who delivered the conventional 3D course) also happens to be the head of the CyberKnife program at our hospital. We asked him if CyberKnife is an option to deal with a possible recurrence. He said it depends on how aggressive it is. CyberKnife is not an option if (a) the patient relapses soon after resection, or/and (b) the recurrence happens in multiple spots. He explained that using CyberKnife in such a scenario is akin to Whack-A-Mole game. You hit one spot only to see another one pop right next to it. He said that CyberKnife can be a viable option if the patient stays in remission for a long time and then relapses just in one spot. Maybe two spots, I don’t remember what exactly he said.

    in reply to: Curcumin Study #55409
    Eli
    Spectator

    It’s an exciting sounding study. But keep in mind, it was done in a dish. I only read the abstract and from the sounds of it, they applied curcumin directly to CCA cells.

    If you plan to take curcumin orally, review what Wikipedia has to say about curcumin bioavailabily:

    http://en.wikipedia.org/wiki/Curcumin#Bioavailability

    FWIW, my wife currently takes 95% curcumin supplement with piperine (“bioperine”). I’m thinking about buying two other formulations mentioned on Wikipedia: Longvida and Meriva. It’s very hard to tell which of these formulations works best. The “no-regrets” solution is to alternate between them.

    in reply to: Our new message board – Bugs/Errors/Troubleshooting #55182
    Eli
    Spectator

    Rick,

    Apparently there is a bug in PunBB pun_stop_bots plugin that is responsible for random cut offs:

    http://punbb.informer.com/trac/ticket/360

    The bug was first found in version 1.3.*. As far as I can see, it’s still not fixed.

    The work-around is to disable the plugin, as reported in the last post of this thread:

    http://punbb.informer.com/forums/topic/23638/punbb-truncates-messages/

    in reply to: Our new message board – Bugs/Errors/Troubleshooting #55181
    Eli
    Spectator

    And just to round things up :), here’s a thread where the LAST message is cut off.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=44365#p44365

    in reply to: Our new message board – Bugs/Errors/Troubleshooting #55180
    Eli
    Spectator
    rick wrote:
    (I have however found Andy’s entry cached in Google and I have restored it. If you find other posts cutoff, post the link here and I’ll see what I can do to restore.)

    Rick,

    Here’s a thread started by Andy where the first message is cut off. I guess you restored a different post?

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=4553

    in reply to: Resveratrol #55330
    Eli
    Spectator

    Tflory, I don’t know enough to comment. See my disclaimer in the previous post. No medical education of any kind.

    I reached the conclusion that I can’t be certain that Resveratrol is safe. That’s the gist of my post. “Do not harm”.

    in reply to: Question to Percy about Celebrex #55325
    Eli
    Spectator

    Hi Percy,

    Thank you for your detailed response. I will reply point by point.

    PCL1029 wrote:
    1. I am on Celebrex 400mg BID for almost 2 years for the reason as you said. “I googled “cholangiocarcinoma COX-2″. I found a few studies that suggest that COX-2 is overexpressed/upregulated in CC.”

    My biomarkers report indicated I am overexpressed on the biomarker PTGS2 and thus ovrexpressed on Cox-2, that is why I still take the Celebrax even it does not seem to help my recurrence.

    My understanding is that:

    (a) you started Celebrex after your first resection
    (b) you did your biomarkers report after your second resection

    In other words, you were able to obtain Celebrex prescription without the benefit of biomarkers report.

    I wonder who wrote your prescription. Your surgeon? Oncologist? Family doctor?

    I also wonder how you managed to sell Celebrex idea to them. Without biomarkers report, the evidence to support Celebrex use in CC is not that strong.

    PCL1029 wrote:
    2. Your quote– “The result that I found the most intriguing: patients who started taking low-dose aspirin after they got diagnosed had a better survival rate than patients who didn’t take aspirin, but only if their colon cancer was COX-2 positive. This finding makes intuitive sense. Aspirin is a COX-1/2 inhibitor.” I presumed you are talking about the use of aspirin in CCA patient situation only and NOT other diseases.
    Aspirin is an ” NASID’ and NOT 1/2 or whole cox-2 inhibitor. it is a different class of anti-inflammatory agent. No sorry,Eli,your find does not make sense, but a good assumption even though it is incorrect.

    You are right that Aspirin is an NSAID. Non-steroidal anti-inflammatory drug. If you look at the mechanism of Aspirin action, you will find that it inhibits COX-1 and COX-2 enzymes. It’s easy to verify. Just take a look at Aspirin page on Wikipedia, or google “aspirin COX-1 COX-2”.

    The suppression of COX-1 is responsible for the nasty side-effect. Aspirin causes GI irritation and bleeding in some people. To overcome this side-effect, scientists developed COX-2 selective inhibitors such as Celebrex and Vioxx. BTW, these drugs are NSAIDs too.

    Back to the colon cancer study that I linked in my original post. I found a good summary of the study on MedScape:

    Colorectal Cancer Patients Taking Aspirin Live Longer
    http://www.medscape.com/viewarticle/707279

    MedScape wrote:

    Strongest Association With High COX-2 Expression

    The inverse association between aspirin use and a lower risk for colorectal-cancer-specific mortality appeared to be strongest among individuals with primary tumors that overexpressed COX-2, compared with those with weak or absent expression (HR, 0.39 [95% CI, 0.20 – 0.76] vs 1.22 [95% CI, 0.36 – 4.18]).

    It is possible that other COX-2 inhibitors might have a similar effect, explained Dr. Chan. “The effect seems to be related to the inhibition of COX-2, and that mechanism is shared, so it is possible that celecoxib might have a similar benefit, although we don’t know if it will be of the same magnitude,” he said. “It has been shown to prevent precancerous polyps, so there are reasons to believe that impact on survival might be similar to aspirin.”

    But for both agents, the risk for adverse events has to be considered. Aspirin is associated with gastrointestinal irritation and bleeding, and although COX-2 inhibitors, such as rofecoxib and celecoxib, have less gastrointestinal toxicity than aspirin, they have been associated with cardiovascular toxicity, Dr. Chan pointed out.

    “Our study provides a compelling rationale [with which] to understand how these agents work and to develop medications that have anticancer properties but fewer side effects,” he added.

    New Biomarker?

    An accompanying editorial hones in on the COX-2 finding.

    “The specificity of the response of colorectal cancers to aspirin for patients in whom tumors overexpressed COX-2 suggests that this potential future treatment comes with its own ready-made predictive biomarker,” writes editorialist Alfred I. Neugut, MD, PhD, professor of medicine and epidemiology at Columbia University in New York City.

    In the near future, COX-2 expression may become “a standard predictive marker and aspirin may become standard adjuvant therapy in the management of colorectal cancer,” he suggests.

    (red font mine)

    Will aspirin show the same benefit in COX-2 positive CC as it did in COX-2 positive colon cancer? We don’t know for sure.

    Is it unreasonable to say that aspirin *might* be of benefit to CC patients with COX-2 positive disease? I don’t think it’s unreasonable at all.

    PCL1029 wrote:
    4. Your quote–“Putting two and two together, it’s seems logical to come up with a theory that low-dose aspirin might be of benefit to some CC patients.”

    I do not think so ;Aspirin will affect the platelet count and that is no good if patients are on chemotherapy.

    Sorry, some sloppy writing on my part. I am fully aware that patients undergoing chemo MUST NOT take aspirin. We have information sheets about 5-FU, gemcitabine and cisplatin. They all warn against aspirin use during chemo.

    What I meant to say is that low-dose aspirin might benefit CC patients in remission (and thus not on chemotherapy), who also happen to have COX-2 positive disease.

    Wishing you the best,
    Eli

    in reply to: Xeloda (oral) Questions #55282
    Eli
    Spectator

    Re: Udder Cream

    That’s the cream that our hospital recommended. It’s not just for cows…. they do make human formula.

    http://www.uddercream.com/

    in reply to: Xeloda (oral) Questions #55279
    Eli
    Spectator

    Marion, just to clarify… nurses talked to us about 5-FU side effects. They gave us an info sheet with all the symptoms and instructions what to do in each case. They even gave us a few samples of the foot cream that hospital recommends.

    What they did NOT tell us is to get rid of the thick, hardened foot skin. That’s what my wife was upset about.

    Anyway, it’s all water under the bridge now.

    in reply to: My wife’s extrahepatic CC #55065
    Eli
    Spectator

    Patty, thank you very much for the book reference. I will check it out.

    in reply to: Xeloda (oral) Questions #55275
    Eli
    Spectator

    Xeloda is an oral form of 5-FU. My wife was on infusional 5-FU for six weeks.

    Here’s a tip that we saw too late. I wish we knew it on Day 1.

    If you have thick, hardened skin on the soles of your feet, get rid of it now. If you are unlucky to develop a really bad case of hand-foot syndrome (like my wife did), that thick hardened skin is nothing but trouble. It bubbles up, it cracks, it peels… it’s a mess.

    My wife was actually quite upset that no one at the hospital warned her beforehand that she has to take good care of her soles before going on 5-FU.

    Good luck!!

    in reply to: Our new message board – Bugs/Errors/Troubleshooting #55172
    Eli
    Spectator

    Here’s a thread were the first message is cut off.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3472

    I’ve seen a few more threads like this.

    in reply to: My wife’s extrahepatic CC #55062
    Eli
    Spectator

    Thanks Susie, sounds like a great app! All we need is an iPhone to go with it :-)

    I think I would enjoy using that app. I’m a control freak. My wife, not so much. She is more of a free spirit.

    I know that recovery from radiation is a slow process… I hope you are starting to feel better day by day.

    Wishing you the best,
    Eli

    in reply to: My wife’s extrahepatic CC #55060
    Eli
    Spectator

    Hi Kate,

    Our surgeon told us exactly the opposite!!

    I asked for creon prescription before discharge from the hospital. He said we don’t need it, because my DW had enough pancreas left to produce good amount of enzymes on her own. He sent us home without prescription.

    He was right. 6-8 weeks after Whipple, her New-And-Improved, Man-Made digestive tract started to work near perfectly. She even said it worked better than the old one, given to her by Mother Nature (she had digestive issues her entire life, but she was never diagnosed with anything). It was good while it lasted… chemoradiation messed it up again. Thankfully, she recovered from that too.

    She is not gaining weight b/c she is not consuming enough calories. As simple as that.

    I do hope that steroids will help. My wife’s dietician said that some of her patients gained a lot of weight while on gem/cis. I’m guessing b/c of steroids.

    Best wishes,
    Eli

Viewing 15 posts - 466 through 480 (of 497 total)