pcl1029
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Hi,
“rvb: If I am understanding correctly, the testing offered a more directed approach to your treatment? So it was successful as it appears to me, and good news for you. I will bring this information to my Nurse Practitioner on Monday’s appointment for her response. As mentioned previously, I am not looking forward to FOLFIRI. All options are on the table.
I did some quick research on the PD-1 and there appears to be a trial by Merck in Philadelphia. Side effects will have to be evaluated, of course. I am feeling pretty good for the state of the disease, and I would preferred not to feel too much worse.”Yes, it offers a more personalized treatment ,more specific response to each individual CCA patient.
The problem is not all the oncologist will treat your CCA using gene sequencing,only those in large cancer center or university will do it. So your nursing practitioner may not FULLY understand the underlined FUTURE value of “the next-generation gene sequence” . So be prepare for that.
But compare to just one year ago, to me, there is definitely more oncologists order the test.
For me ,since my CCA already recurred 3times, I viewed the ” the next- generation gene sequencing” will be a future road map for my chemotherapy treatment as well as I always keep an eye on interventional radiology and immunotherapy.
God bless.Hi,
I think nowadays” the next- generation gene sequencing” will be part of the protocol of tumor treatment vey soon and as common as a CA19-9 in most of the largest specialties hospital to provide a more special and personalized medicine approach to treat malignancy.
To answer about fast or slow growth of CCA, this is an opinion from a liver surgeon,and in my case so far, it is true.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=59078#p59078
God bless.
Hi,
I think after a week of chemotherapy break,she will feel better. The next 3 cycles of Xeloda+oxaliplatin starting on August will not be as bad as the chemoradiation she went before.
Of course, to finish the entire treatment plan including the next 3 cycles of Xeloda+oxaliplatin will at least ,if recurrence occur, you will know that you had try this treatment before and move on to other new agents instead.
Usually the oncologist will prescribe pre-meds like Emend ! A 3 day supply of anti nausea/ vomiting agent along with dexamethasone to less the N/V feeling before,during and afterwards of each cycle of treatment.It is also Try to get doctor to prescribe antidepressant to help the mood and sleeping( Xanax or lorazepam will do the job well)
You do the right thing to calm her down. Good luck with the next treatment cycle.God bless.
Hi,
An easy( relatively speaking) procedure( TACE) or chemoembo is a palliative treatment to give a large dose of chemotherapy like cisplatin,mitomycin and adriamycin to the tumor in the liver thru arteries to the tumor sites. It is not a long term solution for the disease but can extend the quality of life and time hopefully long enough for other new treatment or medications to come around.God bless.
Hi,
1. Swelling of the lower part of the body and abdomen is caused by ascites. As the liver function declined ,it’s ability to filter toxin, to perform it normal activity to digest food with its production of enzymes and proteins is declining; it’s ability to filter the blood is affected and therefore no longer to perform effectively . The excess fluids now are handled by the lymphetic system and the excess lymph fluids will be end up as ascites ,part of the reason for the swelling.
2. The lymph node mets ,yes will affected by the tumor growth,it will cause the lymph nodes themselves swelling .( think of it as a battle ground of lymphocytes as an army exchanged fire with the tumor cells as its counter parts; ) it can affect the lymph flow with regard to ascites.
3. I think the hematemesis may be more related to the esophageal varices, it is related to the liver which cannot maintain its normal function.
4. Sign of the end and how to prepare for it. Please read the link below.and other members will give you helpful encouragement and other hint of such .http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=9972#p9972
5. The dosage should adjusted and titrated up by your doctor , the rule is to give enough of morphine to easy your father’pain without over dosing him into sleepiness. Put his legs up with a couple pillows and request doctors to do a paracentesis procedure( to remove the fluid in the abdoman) will make him feel more comfortable.
God bless.
Hi,
Since your mom had surgery done not long ago(May 15, 2012); I think they can use the “pathology tissue block” that identify the tumor as cholangiocarcinoma to do the” next-generation gene sequence” ;NOT just doing the chemotherapy agent sensitivity report but the WHOLE gene sequence. The only disadvantage of the paraffin tissue block is it is/maybe not as good as Fresh tumor tissue.
Since your mom has most if not all the level 1 and 2 chemotherapy agents used and find not effective; the next logical step is targeted agents therapy and that will be best to have a road map to guide the oncologist to use the most effective targeted agents to treat you mom. and in this case,”The next-generation gene sequence” is the road map . It save time and expenses to find the effective treatment rather than like the chemotherapy experience that your mom had— try this, if not work ,then try a different one . and that is the reason you mom should have the “next-generation gene full sequence” done to guide treatment plan.( but please remember, I am only a patient for 53 months of this disease and not a doctor. I am 63.)Other arms of treatments like interventional radiology ,such as RFA,Chemoembo,IRE,microwave ablation and radioembolization for intrahepatic CCA, and immunotherapy such as anti PD-1 or PDL-1.
Keeping uptodate knowledge about this disease and new development is important too as well as treating this disease as chronic disease is also a good
way to deal with this roller-coaster disease.God bless.
Hi ,everyone,
It is also important that we realize that currently, 80% of the seafood that we eat in the States are from foreign sources. Since prevention is the key to prevent diseases such as this one, I think it is as important as trying to find out the cause.
God bless.
Hi,
I am not trying to discourage you or anybody but the fact is that recurrence is VERY common(50-75%) in cholangiocarcinoma(CCA). I am 63 and have my most recent 3rd recurrence in June,2013.
To treat this CCA as a chronic disease like hypertension or diabetes is one of the way to deal with this roller-coaster disease.
For me the ultimate hope is that I can last as long as possible in time for the new drugs to come around to either cure this disease or prolong my life without affecting the quality of my life.(time frame estimated is 5-7years).With regard to your second question, yes, I agree with your doctor for chemoradiation and adjuvent chemotherapy.( but please remember, i am only a patient and not a doctor)
The best way to help yourself is by keeping uptodate knowledge of this disease and may be of benefit to you to ask your surgeon to see whether he can order or arrange Caris Life Science or Foundation Genetics to have your tumor tissue to perform ” a next-generation gene sequence” for you; the benefit is that,in case recurrence occur, or if the current treatment needed to be revised,you will have the genetic info for oncologist to provide you the most effective targeted agent that match your gene profile for treatment. It saves time and expenses in the future .
God bless.
Hi,
I am a patient of this disease for 53 months now, and I am 63.Last June was my 3rd recurrences of this disease and the surgeon who performed my last 2 resections(2009 and 2011) ,this time said no resection due to the location whether than the lymph node involvement . He recommended me to seek interventional radiologist consult and my two tumors in the liver was burn off by microwave and PEI for the lymph node. There are other procedures for tumor of the size of the large kind, like chemoembo, IRE?or radioembo by interventional radiologists.My suggestion is listen to John Hopkins and then ask them what alternatives they can provide besides surgery. If possible, try to ask them to do a” next generation gene sequence” from the tumor tissue for your mom.That way in the future, when a new immunotherapy or targeted agents come around in the future, you will have a better chance to choose the more specific agents to treat the tumor and less the waste of time and expenses to search for the effective treatment.
Clinical trials should be consider as an option too.Look at the top bar of this web site under cholangiocarcinoma and click clinical trial to have a sample to look into .
To treat this disease as a chronic disease is not a bad idea, and keep uptodate of the current knowledge and development besides surgery(ie: like in radiology and chemotherapy, targeted therapy and the newly development of immunology) is essential to prolong the survival of this disease.
God bless.
Hi, Gavin,
You are up too early, but the above link is good for those who would like more about their doctors if they are the members inASCO.
Thanks for this link and be sure to say hi to your mum for me.
Some how tonite will be in the 50F , in July? Hardly I can believe this is happening.
God bless.Hi,
Start withe link below from Mayo web site, fill in the required info.
In the medical concern section, stated that you request a “multidisciplinary team” of liver specialist/surgeon,interventional radiologist and oncologist consultation of CHOLANGIOCARCINOMA and within 48hrs ,they will call you back for your concern.https://forms.mayoforms.org/forms/up/mc408606.cfm
God bless.
