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Please let your mom read this message if ok with you.Hi. Sowfi’s mom,
I am a patient,have the same disease as you for 30 months now. I am in the medical field for a long time but I am not a doctor and I am also using chinese herb for my cholangiocarcinoma in the past.
Chinese herbal medicine works for the body as a whole but not as the main or solo means of treatment for aggressive disease like tumor or cancer.Before I started my chemotherapy,I went to Toranto,Canada to consult one of my classmate who specialized in Chinese herbal medicine for treating cancer.He told me FRANKLY the best way is to have the chemo or radiation treatment for the cancer and let him to supplement with herbs to boost my immune system and energy.BTW, he got his degree from mainland China(the traditional way) and have over 30 years in experience.
In short ,at best, herbal medicine and dietary means are complimentary to the western medicine practice.
If you do not like to have chemo,there are other choice like radiation treatment to help you.Please consult the interventional radiologist for this.Nowadays,especially during the last 5 years,the chemotherapy have been improved a lot both in turns of positive treatment outcome and less side effects.
Dear sowfi’s mom, you are only 56,young by any standard,I am 61 and have more or less the same tumors on both the left and right liver;I tolerated the chemo well,and depends on the situation, currently a pill called Capecitabine (Xeloda in the U.S.) has been used ALONE to treat our cancer And I tolerated it well. So it is all not that bad to try chemo and you can stop it anytime because you are the patient and you have the right to do so.
If you like ,you can e mail me for more specific info.
God bless.Hi,
If I may ask,is the last scan is a PET that shows cancer cells light up as hot spots on the scan or just the oncologist’s guess?
Only PET scan can tell whether the tumors have metastasized or not.
If the ascites(the abdominal fluids) increased, the doctor can prescribe your mom Lasix and aldactone to help decrease the symptoms.
If she cannot take chemo Gemzar.(I took it for 14 months),on paper Gemzar is one of the easier chemo to take without major side effects;but as a real patient, I know it better because of both psychological and medicinal reasons can really threw a curve on the patient. But have her try Xeloda by mouth either at full or half dose? Xeloda may be worth considering;ask the oncologist if you still open for the chemo idea.
If the tumors did not metastasized, radiological treatment like PDT or SBRT still may be the choices for ductal CC like Hilar or Klatskin CC. if your mom can tolerate the treatment;ask the interventional radiologist for consultation.My suggestions are based on what your description about your mom’s case on the message you posted on the 9/7/2011. and it seems -there are still treatment choices available out there and 2nd opinion for interventional radiation may be a good idea.
God blessHi,
please keep us informed.
and make sure exactly where the location of your cc is.
It will be helpful later in our discussion.CC is a long and winding road that requires courage,patience and knowledge.
Try to treat CC as a chronic disease like diabetes or high blood pressure and you will feel much better in dealing with the disease.
God bless.Hi,
When was the last CT scan ?
How long she was on Xeloda? Is it 2gm twice a day?
Base on what you said,the tumor situation is stable and that is good news.Surgical bypass is rare but may be necessary in a jaundiced patient for whom stenting cannot be achieved for technical reasons such as tumor location.
Percutaneous stents (external drain) is another approach for relieving jaundice
if endoscopic approach is not possible.—treatment options for locally advanced CC.–uptodate.com May 2011.
God bless.Hi,
Congratulation on the 5 year survival for your dad. And I hope he will have another 30 more years to enjoy life.with God’s help, everything is possible.
God bless.Hi,
When tumor sizes<3cm,Reports indicated that RFA might be as effective as resection. When the size is >5cm the effectiveness of the RFA might be the same as chemo or less. Radioembro with Y90 may be an alternateive plan of treatment ;please consult an interventional radiologist for advise.
The problem is sometimes when the tumor is located at a difficult location such as near the diaphragm or very close to the major blood vessels or at the back side of the liver,RFA will be difficult to burn ALL those tumor lesions off and liver resection may required to completely remove the whole tumor and give the patient a comfortable and clean margin.
Keep in touch.
God bless.Hi,
Either way is fine for the Mayo Clinics visit;doing it now will most likely be recommended to have adjuvant radiation and/or chemo;doing it later after the next 3month CAT scan will give you a better treatment plan in case the CC will recur. For my CC.(clean margin>1cm, and no metastasis). I didstarted 14 month chemo Gemzar only 2 month after surgery;then stop, 6months later,the CC recurred at different sites and resected for the 2nd time.
You did not do adjuvant chemo and you are 7 month clear of CC;make sure you eat well(2000-2400calories/day),eat more fruits and vegetable ;eat more protein and eat less meat.20 min. walk 5 times/week as exercise.Every patient is different,but if you keep yourself in good health and shape;it will much easier to deal with the problems that may come up later. 2nd opinion with Mayo is highly recommended.
Keep in touch.
God bless.Hi,
Welcome to this site for the same reason as I am. I am 61, and have been an intrahepatic CC patient for 30 months with 2 resections.
I regard the CC I have as a CHRONIC disease like hypertension,It required knowledge,patience and courage to navigate on this long and winding road.
and above all,we need the Grace of God to provide a cure or a way to improve our chances of survival.
If you know anything new on this disease,you are welcome to share with us.
If you want to know the basics about CC,you are welcome to read about our entries.
God bless.Hi,
You are only 42 years old,therefore the age factor is on your side.BTW I am 61,and is a patient of CC for 30months and I am not a doctor.
PET scan will determine if the cancer have metastasized to other parts of the body. If not, surgery will be an option for you;but you need a very experienced surgeon,not just any GI surgeon .
I am strongly agree with others to get a 2nd opinion on your diagnosis and stage etc. You said 6 months ago ultrasound of the liver found nothing but 6 months later you were diagnosis of cholangiocarcinoma(CC) of the intrahepatic CC type instead of peri or hilar extrahepatic CC or a combination of both types. please ask the surgeon where the tumor is actually located because the treatment plans is different.
Where do you live? Mayo Clinic in the mid-west,MD Anderson in Texas and John Hopkins in the East and UC San Fran in the west are the best choices for consultation for CC.
God bless.Hi,
Even if you husband is on blood thinner like Coumadin for the clots in the lungs. if he stays in bed all the time and not moving that much;he may develop deep vein thrombosis (DVT)–blood clots in the legs that can cause leg pain and need to be ruled out by the attending physician. I think the lack of moving around and being stationary all the time may contribute to the shortness of breath (SOB) when he try to walk or do things.(SOB due to lack of exercise).
Of course being tired and shortness of breath can be related to the cancer too.
I am a patient for 30 months and I feel tired and have the feeling of shortness of breath at the end of my working day but not during the days off.
The 3 month check up with Cat Scan or MRI or PET will be coming up soon and you will know for sure how you husband’s condition is.
Take loperamide(Imodium) 1-2 capsule every six hours as needed when diarrhea occurs.(do not take more than 8 capsules/day);consult doctor if diarrhea still a problem after a couple days.Eat well and be strong.
God bless.Hi,
Fever is a common side effect of Zometa infusion.(44percent chance)You can take Tylenol or ibuprofen to lower the temp and make sure you are stay hydrated.
If no improvement after a day or two,call your doctor for further instruction .
Flu like symptoms–tiredness is also a side effect of Zometa.
Also make sure you are taking calcium 500mg and vitamin d 400units daily while you are on Zometa.Hi,
1. Is reresection possible?
Did you discuss with your surgeon about that possibility although as you mention about 65% of the liver had been removed.
You are only 46 years old,and patients can survive with only 25% of the liver left.
2. How big are your 5 tumors? If they are smaller than 4cm or even 5cm,RFA or microwave ablation may be the choices if the interventional radiologist can get to the tumors;Chemoembro or radioembro with Y90 also can be used.
You can also do chemoembro for the tumors and follow with RFA on the same tumor sites for better results. Some studies indicated the results were as good as resections;However there were also other reports indicated otherwise.
As Marion said, radiology consultation by an interverntional radiologist is the best bet for your treatment plan if you choose radiation therapy.
3. Chemotherapy with molecularly targeted agents such as Tarceva ,Erbitux, Avastin etc with or without traditional chemo agents like 5FU are among other choices too.It seems to me RECENTLY more oncologist are prescribing Xeloda by mouth ALONE for full or 75% of the dose for 8cycles (2weeks on and 1 weeks off) and Xeloda alone is easy to take then IV chemo.Radiation with chemotherapy at the same time is also another choice.
I know CC is always a trough road to travel;hopefully step by step,and with God’s grace,we ,as patients,can reach our goal of being free of this disease in our life time.
Keep in touch,you can email me if you want to. I am sure I had already missed to read a lot of other messages on this site lately.
God bless.Hi,mn,
Some time ago you did mention to get a second opinion from Dr. Lenz. is that what he said that nothing can be done for your mom?
Do you know what is the name of the pink and white pills you mentioned on the other message?Norco 5 or Norco 10 1-2 tablet every 4 hours as needed are the normal dose that prescribed for moderate cancer pain. it is part of the opiate family which constipation is one of the side effect of that group of drugs.
If the Norco can control the pain,I will not ask for morphine for your mom until later when she really needs it.
For constipation:
1.Stool softners
Senna(Senokot) works on colon and can be bought OTC.;they may take up to 6-12 hr to work.Colace,Surfak(Docusate sodium) works on the small and large intestine(colon) and can take up to 24-72hrs to work.2.Stimulant laxatives
ducolax(Bisacodyl) 5mg tablet , 10mg suppository and Fleet enema which are a bit stronger than that of the stool softners.(OTC);they work in the colon too.;they may take 15min to an hour to work.;Castor oil works on the small intestine and it may take up to 2-6hr to start working.3.Saline Laxatives
Magnesium citrate or Milk of magnesium are saline laxatives works on small and large intestine;Sodium phosphates(Fleet Enema) is also a saline laxative but works on colon.(30min to one hour)
4.Lubricant
Mineral oil works on the colon as lubricant;it may take 6-8hr to work.5.Misc.laxatives included glycerin suppository(15-30min-colon), Lactulose(24-48hr-colon), Lubiprostone(24-48hr-acts on GI epithelium),Miralax(48hr-acts on small and large intestine) and sorbitol70%(24-48hr-acts on colon)
As you can see ,there are a lot of choices,but I think the best way to handle your mom’s problem is to ask a GI physician about which one or two ( or combinations) that can work the best for your mom base on the location of BM problem and duration or action of the laxatives he/she choose.
To control pain more precisely ,I will consult a pain specialist.
In hope the info. helps.
God bless.Hi,
If so, after completely recover from the whipple procedure(usually 2-3 months,but may be longer for your husband because of his age and general health); follow up with a CAT scan or MRI with contrast or A PET scan of the chest,abdomen and pelvis to see whether the cancer is completely removed from the surgery.(usually this kind of scan should be done 3 months after the surgery as a follow up exam anyway.At that time,schedule both a surgical and oncology consultations are warranted and the decision of having chemotherapy or radiation or none should be discussed further.
In the meantime enjoy each moment with your husband because this is a very rare gift that God provided for you and your husband since surgery is the only hope for a possible cure for cholangiocarcinoma.
when did your husband had the whipple procedure?
Give him Ensure(high calories protein liquid) to supplement his diet 1-2 cans a day may not be a bad idea too.
Keep in touch.
God bless.HI,
Welcome to the site.
Age is a risk factor in determining future treatment plans for your husband.
1.The stage of Cancer(ie. I,II or III) and
2. where to cancer is located or metastasized to other parts of the body(ie. lymph nodes) is also a factor. Is the cancer in the liver only or in the bile ducts(common bile duct or the left and right hepatic bile ducts);did he had stents put in?
In general,if your husband is relatively healthy,no other health issues such as heart problems,high blood pressure or diabetes;it may be of value in considering chemotherapy or/and radiation—-treatments may prolong life but not for cure;and side effects are mostly depended on the patient’s age and heath.
It also depends on the disease state of the cancer of your husband and how long it takes for your husband to recover completely after the whipple procedure recently.
Sometimes the quality of life instead of the quantity of life may worth to think about too. 2nd opinion is highly recommended
By the way I am not a doctor but just a patient.
Keep in touch.
God bless.
