pcl1029
Forum Replies Created
-
Posts
-
Hi,
This will be my next project for research;the question for me is that , how it will affect my normal blood sugar level if I take it like twice daily after meals at 500mg ,(I think 250mg is too low a dose )even if I am not a diabetic. I can not take the “statins” like lipitor because it caused my liver enzyme went crazy; but I have fatty liver cells (about 10%) on the first pathology report ,so this actually may be of benefit to add to my regimen that now I am off and on taking fish oil to lower my triglyceride- the ingredient for the body to make cholesterol ; but I do not have enough time at this point to do a detail research.
God bless.Hi, NotDoneYet,
Your move to have another opinion from the Maryland trial holds the most opportunity for a cure was the best move I thought so too even the results was not what you wanted. However, Miracles do happen and I will pray for you with my whole heart and my feeling as being a parent too. Xeloda works for me so far after 12 month treatment and I still on it. I hope it can duplicate the result to your son.
God bless
P.S. The effect of the following juice is not proven but is widely believed it contains a lot of antioxidants among others to help our body in the defense .
Use a “magic bullet” cup machine , in the cup provided by the machine; put the following in it.(all of the ingredients should be fresh unless otherwise)
1. 2-3 slices of a big green bell peeper.
2. half to 1 stalk of big celery.
3. 1/2 to 1 stalk of Kale.
4. 1/4-1/2 of a green cucumber.
5. a few slice of a green apple.
and proportionally you can adjust each quantity to make half or one full cup after you get the hang of it; you, yourself can drank it too in the morning as a breakfast drink.it is called the “5 green” juice in the Asian community. Also you can add, in my opinion.
6. a handful of wild or blue berries and a handful of walnut or almond nut powders to the “5 green” juice to increase the antioxidant and protein content for energy.Hi,
plesae see the link below and remember each patient is different in its own way due to the disease state is different;therefore the comparison should be of little value but helpful to understand this disease.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=45400#p45400
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=68844#p68844
And this my personal opinions only, every treatment is not 100% proof, the only way to get the best educational guess is through learning about this disease .
Good luck in choosing ,and you are the very few the God give you so many choices.
God bless.Hi,
As I said before, we work together as one unit, not for any individual as far as things on this message board goes and this is my personal belief. If any success come from anything I did or will do for this web site in the future, it belongs to ALL of us.
And please, for those who are not familiar with our work on this web site,there are a lot of people working behind the scene for things to happen. Stacie and Marion among others; and without your generous donations this may not happen at all. So thank you for your help.
God bless.Hi,
Congratulation!
Three things you should know if you want to,;Remember I am not a doctor but a patient.
1. Call Dr. Kato and ask when your father should stop current chemotherapy before his surgery. This way you will not waste valuable time to wait for additional chemotherapy-free days before surgery.
2. Be very hopeful but guard against being too optimistic ; pray hard and earnest to God for his Grace upon your father even you are in good hands with Dr. Kato. Yes, recurrence is high( >50%) but surgery is the ONLY possible cure for this disease. I am a patient myself,and I am happy that my recurrence last year can be removed by 2nd surgery .
3. The clinical trial— Panitumumab with Cisplatin/Gemcitabine is not easy to take,the side effect from the panitumumab is especially hard on the face and skin of the body even your dad is only 57 years old.
God bless.Hi, Gavin,
Thanks for such a tribune to the relationship between you and your father.especially from a big Scottish lineman like you.
However the most admiring character and love that will make your father much proud of you is after all those years and suffering the death of you Dad, you did not walk away from this website and move on to other business; instead, you stick around and put your energy into this website and contribute to those who need advice and emotional support. You motivate me to do the same,for that I say to you thank you and be sure to say hi to your mum for me even the BEARS lost last nite.
God bless.Hi, Lainy,
That will be music to my ears.
Thanks Lainy, sometimes when I know too much about this disease,and compound for the fact that I was part of the caregiver team for my sister-in-law and saw the outcome from the beginning to the end of this disease that I have; I get depressed at times; but I know I have already had a good run for 44 months and that has been a gift from God already and I could not ask for more than that. I will report to all of you about the FDA meeting late tomorrow or early the next morning.
God bless.Hi, Bruce,
just do like Lainy and try to talk s/he into the PET if you think it will make a difference. . T1N1M0 is much better than T1N1M something.
In my case ,when the CCA recured and after the 2nd resection; they (both the oncologist and the liver surgeon) told me I am in stage III due to the recurrence.As recent as this month ,even I am clean,my oncologist still gives me the stage III rating. Is that means next time when the CCA recur again and get fixed,I will be in stage IV? I will ask him next time for the answer.
God bless.Hi, Gavin ,
What is the name of lead author and appeared in what journal.
I think I read a similar one but not sure is the same.
Well, that BEAR will win today but the future is well, as usual.
Say hi for your mum for me.
God bless.Hi,
Sorry, I do not know the answer, in general ,if you can tolerate the drug and it works on the cancer, you can continue to take it until otherwise.
The problem is that the accumulative toxicity like peripheral neuropathy sooner or later will force patients to stop treatment .And the toxicity will last much longer than you expected depending on the total accumulated dose.( due to the long term retention period of the platinum drug is between 8-75 month; oxaliplatin has three t1/2 life [half life] at 0.26 hr,16.3 hour and 273 hr.)
Therefore the toxicity may show up within the first 1-2 hour of each infusion, as acute peripheral neuropathy which can be resolved within hours of onset;(about 38 % of pts);or the delayed type will show up in>14 days and the symptoms will be persistent (about 48% pt who are on 5FU+oxaliplatin)
Other patients cannot continue oxaliplatin included those whose will develope low platelets—-bleeding concern( 64-71%) and white blood cell count—eg.infection concern(73-81% in study done for colon cancer on long term treatment.)
God bless.Hi, Gavin,
It is a good article to learn about that complementary and alternative treatment(CAM).
Thanks.
God bless.Hi,
I am a patient of intrahepatic CCA for 44month ; I am on Xeloda chemotherapy now for about 12 months and will continue this for a while.
I had my 2nd opinion on medical oncology as well as liver GI specialist consult up at Mayo. in my opinion, Mayo is an excellent place to go for 2nd opinion;but I found they were more on the conservative side of treatment plans.
If I ,myself, want to explore more treatment plans beyond Mayo,2nd opinions by other hospitals like John Hopkins or Mass General Hospital (MGH) will be my choices in overall multidisciplinary approach for the disease; MD Anderson will be for systemic chemotherapy consult. Yes, Chemotherapy and Targeted therapy for cholangiocarcinoma are very limited and efficacy of treatment plans are not absolute.
About available chemotherapy besides clinical trials,below is the link may be of interest to you.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7843
God bless.
Hi,
TPN is not uncommon for patients of cholangiocinoma.
PICC line is one of the method to administer TPN.
Most TPN administration are done in hospital until situation improved.
It can also be compounded by outside pharmacy for use at home.
PICC line infection is one of the concern when patients are on TPN .
God bless.
