pcl1029
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Hi,Lainy,
I think sometimes a person’s gut instinct can serve him/her well in situations like that. For myself,as a Christian, that is God’s Grace to give me a good surgeon without asking Him. For others, it may be called lucky.of course,if a patient or caregiver have the ability to have the time and will to do research before hand,this is the BEST way to Fight any disease. (like Treejay’ s successful story in caring of his mom.)
Sorry,Lainy, I did go to bed before you did, and thanks for the beautiful poems you wrote for Devasated on the passing of her husband.
God bless.Hi,Eli,
That is why I said in previous messages,yor are a very detail oriented person.
I KNOW you will do fine in researching for your wife.
And you will see and study the information at hand and link them together to get the most out of each article you research.in that way ,you will get a bigger and better picture for finding the best treatment for you wife.
The study ,like you said, is not controversial; but for me, practically,it is not very useful in terms of for treatment of CCA patients,like me.
BTW,what Lainy said applied to me also, I did not do any research on my liver surgeon,I just trust my oncologist’ recommendation. It turns out he is the one,after the resection,my GI surgeon friend would recommend too . Things happened so unexpectedly that even I know 2 nd opinion is an option I should do but I did not seek.
With regard to the length of appointment, you got 30 min. ; well the longest I got so far is about 15 min.God bless.
Hi,vtimm,
I communicated with him via e mail messages since he joined this web site.
he wrote a thank you note to me the date after his mom resection and everything is fine. I think they will have a wonderful Christmas.He and I are from the same university in Iowa.
I think he will talk to me again if concern about her mom comes up. But so far none of that happen and I think that is a good sign. don’t you think so too?
thanks for your concern about fellow CCA patients.
Keep in touch, do whatever you can to make this disease go away.
god bless.Hi,eli.
Well I can say one thing about you, you make me work harder,you make me study more about treatments and alternatives for CCA; for this I am thankful. Like Gavin,your devotion is well appreciated by all of us and especially me.
I do not agree with the study from the point of view as a CCA patient. 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 . 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? Liver can regenerate and so will be the bile ducts. This is not a good study and as always everyone should know that not all the studies are equal of importance.
Even the study itself concluded the 1.8% of adverse reaction of the RFA procedure and the damage to the bile ducts will not affect the long term survival .
God bless.Hi, Mcf,
You are welcome. and keep in touch.If your wife responsed to GEM/CIS; mostly likely she will response to GEMOX which has less side effects than cisplatin;but of course, there is a platium compound call oxaliplatin in the GEMOX regimen But its use is depended on what side effects your wife cannot tolerate with cisplatin in order to minimize the problem with oxaliplatin(ask the doctor for this when there is a need for changing treatment plans if taxotere is too much for your wife.)
The reason I say this is at this time may seem to be out of the context of your current treatments plan. but as a patient myself, I want to prepare for the future.
Taxotere received “US Boxed warning” as follows:(it may not apply to your wife,but just for your info.; as with all my messages on this board are for educational purposes ONLY.)“Patients with abnormal liver function,those receiving higher doses,and patients with non small cell lung cancer and a history of prior treatment with platinum derivatives who docetaxel(Taxotere)doses higher than 100mg/m2 are at high risk for treatment-related mortality.”
Even your wife did not have lung cancer,but she was on cisplatin for a long time. For this I would make sure the doctors aware of this.God bless.
Hi, DianeC,
Thanks for your compliment.
We need more people like you to encourage and comfort those who are traveling on this long and winding road . I know from the previous messages that you were also a caregiver too. Thanks for rejoining us and provide a much needed hand to hold all of us thru this journey.
God bless.Hi, Eli,
The Funny thing is that I do enjoy your challenge and questions. If you are younger,you should study medicine .Well , it still not too late.You are good at details and analytical thinking. The answer to the first question is I am in the medical field also.You are right that aspirin has the ability to inhibit both cox-1 and cox-2 enzymes,I misunderstood that you meant aspirin is a HALF COX-2 inhibitor which does not exist. Indeed the correct pharmacologic category for aspirin is SALICYLATE , it processes NSAID properties but neither is a cox-1 or cox2 inhibitor or a NSAID and that is why I said aspirin is a different class by itself.
I agree with you it is not unreasonable that aspirin may be of benefit to patient of CCA with cox-2 positive disease but be sure to watch its S.E.
If you read my previous message, # 3 on my reply, if needed , patient can still use aspirin(81mg) while on chemo .
Again,thanks for the conversation.
God bless.Hi,
May I ask a few questions in order to understand more about your mom’s CCA?1. what other health issues does you mom have? and What do you mean by “not in good health” diabetes? Cardiac problems? please indicate.
2. If you can quote from the CAT scan or MRI report about the sizes and location of the tumor,it will be better for me to give further suggestions.
3. What Stage of the CCA? any metastasis to other parts of the body?Age is not a risk factor,but patient’s current health condition may be a factor in determining what treatment plans is the best for your mom.
Surgery provides the ONLY possible cure; but depends on your mom’s tumor size and location,less invasive procedure like RFA, chemoembo or radioembo can be performed and patient can go home the same or next day without any problems;chemotherapy,conventional radiotherapy SBRT, PDT are other options but total depends on what kind of CCA your mom has.Ask doctor to prescribe antidepressant to help your mom,it can help your mom to get some weight gain too.Also eat well,CAT SCAN to monitor the disease as well as prayers can help too.
God bless.
Hi,Eli
I found this from my own post;and it may be of interest to usi Celebrex.From Annals of Oncology
A recent study has concluded that using celecoxib (Celebrex, Pfizer) with capecitabine-based therapy can reduce the incidence of hand-foot syndrome (HFS) (Ann Oncol 2011 Sept 22 Epub ahead of print, PMID: 21940785).
God bless.
Hi, Mcf,
First of all, I am just a patient like your wife and I am not a doctor.
May I ask you a few questions to help me understand the course of treatments for your wife.
1. Is this the first time or 2nd time your wife had the Taxotere?
2. Was the GEM/CIS and GE/CAP(Xeloda)not working or just the side effects that forced the change of the regimens? and how long were your wife on those regimens?
3. Fluid retention is one of the common side effects of Taxotere monotherapy (13-60% ;and is dose dependent). The frequency of fluid retention of Taxotere depending on the diagnosis, dose , liver function, prior treatment, and premedication.The incidence is higher in patients with elevated liver function test.and increase sharply at cumulative doses of >/=400mg/m2.Patients should be premedicated with a corticosteroid(ie: dexamethasone) one day prior to Taxotere administration and the 4days that followed(total days=5 days) to prevent PULMONARY/PERIPHERAL edema. If this prevention has already been done; then a 2nd opinion by another experienced oncologist should be consult.—Drug information Handbook by Charles f. Lacy 2008-2009 16th Edition.
Are you still under the care of Mayo clinics doctors? they should be pretty good on top of CCA treatments !!! If so, I will be very surprised by it.
keep in touch,
God bless.Hi,
If patient has jaundice,stent or stents are needed to help the bile flow from the liver and out of the body. It is a relatively simple procedure and therefore you should not be worry too much.
When the bile start to flow normally,after a couple weeks you will see the jaundice subside and then at that time try to get the RFA done as soon as possible before the bilirubin go back up again.If the stents are plastic ,they may be needed to replace every 2-3 month for keeping the bile flows normally;that means your best TIME FRAME for RFA is the earlier part of the exchange of the stents when the bilirubin level is low.Patients can have stents and chemotherapy at the same time;some restrictions may apply to radiotherapy but not all the radiological treatment.
Gavin from UK has more experience in stents and PDT and I am sure he will talk to you soon.
It is better for patient and their caregiver for the patient to have stents rather than the external drainage of the bile. It is messy,and high in infection recurrences.
God bless.Hi,Eli,
1. I am on Celebrex 400mg BID for almost 2 years for the reason as you said.”I googled “colangiocarcinoma 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.But I am cutting the dose down to 400mg daily due to the cardiovascular side effect such as stroke MI CVA etc.that may incur after long term using of Cerebrex(mpore than 2 years)
Strange or not the liver is part of the extension of our GI system from the rectum;Cox-2 inhibitor like Cerebrax is indicated for familial adenomatous polyposis( one study indicated a 28% reduction of rectal polyps.) ApprovaL for non-familial adenomatos polyps is still awaited eariler this year. and for that reason,about 10 years ago COX-2 inhibitors are part of the research for CCA too partly due the human physiology and biology.
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.3. In case patient has to take a low-dose aspirin(81mg ) for prevention of cardiovascular diseases or for their existing heart condition, and need to take n NASID like Ibuproben (Advil,Motrin,Naprosyn,aspirin), take with a proton pump inhibitors like protonix (generic available) once a day before meal may be necessary to alleviate the risk treated by aspirin alone.(ie: GI bleeding,acid reflux ). I take protonix 40 mg daily before breakfast with my Celebrex for acid reflux- a chronic condition for me and it may be a risk factor for CCA if associated with H.Pylori.
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. If there is no inflammation involved,and just want something for mild analgesia, Acetaminophen(Tylenol 500mg-650mg) will be a better choice but should not take more than 6-8 tablet/day or 3-4gm maxium/day due to adverse reaction to liver.
God bless.Hi,everyone,
As patients and caregivers ourselves,we need to be HOPEFUL ;we need to be knowledgeable ;we need to be current and we need to be PRACTICAL in search of finding the possible cure for this disease(we don’t have one right now).
It is always my belief that at this moment,because of the time frame is relatively short for patients;the best way to help our CURRENT patients is to find and improve the current treatments that work now; research and prepare by choosing the more effective treatments with less adverse reactions for the future in case of the CCA comes back. (recurrence is a fact.)
We should be vigilant and careful about all the info.we read on the internet .We should not have false expectation on treating this disease. One treatment working perfectly for one patient did not mean the same will apply to another patient.
Conventional medical treatments are “evident-based “on research as well as clinical experiences; and I think that is why the oncologist said:
-“Cathy this is so new we have no long term data and even though we believe it was all removed there could be one micro cancer cell lurking, but we believe this is a cure. We need you to keep living to prove us right!!”And that is how doctors talk to patients; in short,you have to read between the lines.”
God bless.Hi,
I cannot open the site and read the article;but base on what I read,recurrences do come back no matter which route you go if you have the choice.
If memory served me correctly;a couple month ago on this web site , a CCA patient who had a liver transplant just a year ago did have recurrence. Recurrence was reported in 52% of patients who had transplants when combining all studies(total pt.pop=543 patients).compare to resections,the recurrence is about 65% in general.
The Mayo Clinic liver transplant program which reported a 5 years survival of 82% was reported for patients with CCA arising in the setting of PSC.
Currently base on the summary from uptodate.com literature review board,”orthotopic liver transplantation cannot be considered as a standard form of therapy for localized CCA at present. It should only be considered for selected patients with early stage unresectable hilar disease who have successfully completed rigorous staging and neoadjuvant therapy. Such clinical protocols are available at only a few transplant centers.”
I hope the info. helps.
God bless.
