pcl1029
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Hi,
Protein is the foundation for energy if a patient cannot take fat and carbohydrate such as sugar.
At this stage of the game,vitamins and enzymes may not be as important as protein to provide the patient enough calories in take to sustain the minimum requirement of his/her current health status.
Protein shakes such as boost, ensure and others will have some essential vitamin included in the formula. soy base product like soy milk or bean soups are other liquid protein choices.
God bless.Hi, everyone,
To make this discussion” Systemic Chemotherapy in general for CCA”
It fits to include this link.The link below included most if not all chemotherapy and targeted agents and regimens with the intention to treat cholangiocarcinoma.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=70877#p70877
God bless.
Hi,
In my opinion, it all comes down to timing , location and the will of survival for this disease.
God bless.Hi,
NSAIDS ( ibuprofen,naproxen,Celebrex and aspirin ) are important medications for pain and fever. Acetaminophen is not NSAIDS but its effects may be related to inhibit the COX family enzymes as a COX inhibitor like Celebrex, a COX-2 inhibitor. NSAIDS are anti-inflammatory agents while Acetaminophen is not.
For fever, ibuprofen works better than acetaminophen . Recently FDA recommended acetaminophen dose to be lower to single dose not to exceed 650 mg and combination products such as Vicodin, Norco, Lortab etc. not to exceed 325mg in each tablet. Acetaminophen produces less GI side effects ( ie: stomach discomfort) than NSAIDS.; maximum daily dose should not exceed 4 gm total( in hospital practice ,most pharmacies even encouraged to lower it to not to exceed 3 gm / 24 hrs).
I do not take acetaminophen since it does not work for me as well as ibuprofen or naprosyn does. But I don’t think it will cause any problem to the liver if you take it as mentioned above unless you have liver cirrhosis or taking it with alcohol .Anyway, in emergency case whereby you need to reduce fever in ER quickly and effectively , ER will use the IV formulation of acetaminophen .
If you are on anticoagulant like warfarin, then the NSAIDS dosage may need to be adjusted by your GP if you take them on a relatively regular basis, acetaminophen does not have the same precaution as NSAIDS with regard to oral anticoagulant like Coumadin.
God bless.Hi,
May I ask how old you are. Radio embolization will be what you will have. Based on the experience of our board members who is older( >65) and had this procedure, the result are not what I had expected.
In my opinion ,you should definitely need a 2nd surgical opinion by a liver surgeon who do a lot of operation of this disease ; this is by far the most important step to be possible cure from this disease. USC will be the close hospital that can provided you the answer, call him up, I think the name is Dr. Selby,fax the CT SCAN result and lab work right away to him without delay.
Remember , that cancer need experienced surgeon to operate on, and there are not that many in the States. Even you have to pay for the expense that is not covered by HMO, it still you best bet for the chance to possible to have the CURE. Rather just have the palliative treatment of radioembolization.
God bless.Hi,
How about that TIL trial at NIH .http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=68856#p68856
God bless.
Hi,
Your next most important question may be ” Is the tumor shrunk enough to have the chance of surgery, the ONLY possible cure for this disease.” Unless even after the tumor shrinkage,because of the location of the tumor or have mets to other parts of the body,then it is another story.
I am a patient of ICCA , 2 lesions in the right lobe and an 6×8 tumor in the left lobe, similar to what your mom ‘ s situation. And I had the left lobe taken out and RFA ablation to get rid of the 2 lesions on the right lobe. Your message provided little info for me to understand your mom ‘ case in detail, ( i.e.: the size and the location of the tumor and lesions) .so I will just stop here.
God bless.Hi,
If I may, 2 nd opinion by an interventional radiologist to see whether RFA or microwave ablation can be done to burn the nodules off in the lungs.
Since I do not know what State you are living in or out of the State, I cannot recommend a place for you to go.But in general, you should find a hospital that is affiliated with a big and well known university will be your best bet.
Stanford on the west coast, Northwestern university in the mid west and John Hopkins or Mass General hospital on the east coast are a few of the top hospital in this field.
BTW, distal CCA after whipple by far has the best chance of survival than other kinds of CCA ,like intrahepatic CCA or Hilar CCA. So MD Anderson may not be all wrong to say that those CELLS ,which were too small for the CT scan to see, were there Long before and only biopsy of the lung nodules can provide whether it is mets from the CCA or otherwise.
God bless.Hi,
Please check the links below.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=65176#p65176
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=67942#p67942
It is also a good idea to ask your primary doctor to prescribe antiviral agent such as entecevir 0.5 mg daily for your hepatitis B infection and antiviral medication for hep C.
I am not a doctor ,but I regard ICCA and hepatitis B,and C , whether chronic or active, are inflammation of the liver. And we need to take care of the inflammation in order to live longer. Adjuvant or long term chemotherapy will weaken the liver to fight the hep. B virus and therefore is my reason to suggest that.
I am an ICCA patient for 45 months with chronic hep. b since birth. Resection twice. I am now on the entecevir for almost 2 years and currently on Xeloda adjuvant for 10 months after the 2 nd resection.and now I am still on low dose Xeloda twice daily for the past 3 month.
Yes, your oncologist may not agree with you,but it does not mean that he is right or wrong. 2nd opinion on medical oncology from a large institute may help.
God bless.God bless.
Hi,
To answer your question, I think it is not necessary to fly her down now, it can wait till March spring break. I am not a doctor, but at this point, if anything is stable, do not change to metal stents. The most important thing to do for you dad now is to get a 2nd opinion by a GI specialist like liver surgeon to see whether surgery is possible. RFAby radiologist can take care of the mets in the lungs, surgeons like Dr. Kato in New york or Dr. Chapman in St. Louise are a few you should consult with,ESP. Dr. Kato. HOWEVER Dr. Marsh in UCSF may not be the choice base on what his interest is on laparotomy suggested by other board members here. The big trips can wait if you get ok from the surgeons since surgery is the only possible cure. Your message is very limited to let me understand fully about your dad’s case. My guess is you dad has extra hepatic cholangiocarcinoma with mets to lungs and bones,if so it will be stage IV which surgery may not be possible. I think only Dr. Kato would be the best choice on surgical consult.
God bless.Hi,
I think the study is bias in the way that the group which received adjuvant chemotherapy is younger and in relatively better condition( albumin level>3 ) than the control group. Another short coming is that the study,base on this abstract,did not provide the distinction of the three types of CCA that we know of. Therefore the overall survival may be too optimistic . I may be wrong since I am not a doctor but a patient. But the conclusion may be valid without the word ” significantly”.
God bless.Hi,
2nd opinion on medical oncology is highly recommended .
Nab-paclitaxel is another member of the Taxene family besides Taxotere which one of the member of this discussion board is currently on it.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=9467
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=68270#p68270
Personally, I do think there are other options than using Taxotere. But I am not a doctor . Xeloda is the same as 5FU but in pill form,therefore your sister did try both the 5 FU and gemcitabine. Besides chemotherapy agents like oxaliplatin, there are also targeted agents like sorafenib ,Tarceva Avastin etc. that have been used for cholangiocarcinoma. I will ask more questions before I will accept Taxotere as mono therapy. The response rate is around 20% for Taxotere ,which is at the low end as compare to other regimen.
God bless.Hi,
Thanks for your compliment.
But as you may understand there is disappointment and there is also hope and miracles can be happened. And along this twisting and winding road of CCA, there are no turning back but have to deal with it mentally and emotionally.
God bless.Hi, Wilma,
“My husband has completed chemo. Lost 80 plus lbs, numerous blood transfusions, etc. Now that’s all the medical interventions! Just had repeat ct scan this week and had “slight” increase size in liver tumor. Not so bad for a man off chemo since Oct.”
First, I will pray for your husband and may God’s Grace upon him and lift and/or reduce his burden of suffering.
Second, ,part of the 80lbs he lost might be the fluids in his abdomen and not completely as the lost of body weight;blood transfusions are used to give your husband for anemia,so he would feel better and make him strong.“I am asking for suggestions for pain control. He is on Fentanyl patch 25mcg every 72 hours, Oxycontin 5mg every 4-6 hours prn pain. He has been taking more of the Oxycontin lately – about 25 – 30 mg in 24 hour period. Any suggestions or recommendations?”
With regard to the pain management of your husband; Oxycontin IR 5mg q4-6h prn for breakthru pain and Fentanyl 25mcg patch q 72 hrs are relatively indicated to me that your husband’s pain is not the acute sharp pain but the heavy dull pain that bothers him the most. BTW, the dose of your husband’s pain medication are at the lower end of the scale and you should not worry to much about it.
“His kidney function was damaged as a result of chemo. Stable, producing urine but BUN/CR still elevated.”
How high are the BUN/CR? How’s his ammonia level? does he show signs of confusion at times? The pain meds at this level may not be enough to cause confusion, and the ammonia level will help to understand what cause the confusion if happened.
I am not a doctor’ but I agree that any chemotherapy that contains the platium group(cis,carboplatin and oxaliplatin) will no longer helpful to your husband’s CCA due to poor kidney function.But there are many other chemotherapy and targeted agents such as Xeloda, is cleared thru nonrenal mechanisms and unless the CRCL<30; it can be given to patients with renal dysfunction with dose adjustment ;sorafenib is a targeted agent that can be safely given to patients with renal insufficiency,again with adequate monitoring and dose adjustment since it is only partly excreted by the kidneys.Paclitaxel under go minimal renal excretion,and has been safely administered to patients on chronic hemodialysis.(— from up-to date .com, literature review on Chemotherapy-related nephrotoxicity and dose modification in patients with renal insufficiency.Nov.2012)What I am trying to say is this, get another opinion from another medical oncologist from a larger hospital ;MD Anderson or other university hospital
for a 2nd opinion to see whether your husband is truly out of chemotherapy or targeted agent to treat him; may be there are still medications that can prolong his life and provide a better quality of life to your husband.
In short and based on the limited info. from you about your husband, I believe there are still options for your husband and MD Anderson may be a place to go to since they are more chemotherapy oriented unless you have already done so.
God bless.
