pcl1029
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Hi, Theresa,
Thanks for your complement.
I was at Mayo between 1/20-1/22 with my son. We might actually cross path with you if you were at Mayo during those days.
If Mayo set a date for my ablation ,I will let you know to see where we can meet @ Mayo if it will work out between our schedules.As I said before here on the message board, I have no choice but try to learn and share about this disease hoping that we can someday, finding a better treatment alternative or more tolerable therapy for patients like your mom and me. I can honestly say to you, I am still learning about this disease like you and I will go to conferences to learn more and let all of us, patients and caregivers, know about the most up-to-date information about this disease. As far as I know, the information on this message board is very up to date even when I discussed options with doctors at Mayo. Mayo Clinics ,if you understand , is more conservative among other medical institutions which specialized in CCA.
Anyway, nice to talk to you and appreciate your kind offer of”just being there”.God bless.
Hi, Mary,
sorry to hear about the side effects;you have go thru a lot in the past 22 months;as a patient myself, I know how you feel;indeed ,for myself, my CCA journey is like a tiny wooden sail boat going nowhere in the middle of the ocean.
Do I have advise for you,my friend? the answer is NO because I really do not know about the answer even most of you think I can.
Do I want to give you hope? the answer is YES.
Do I want to give up the fight when it seems there is no hope? the answer is many times.
What I want to do is to give you a hug and pray for the Holy spirit to guide you in the best way that will help you both mentally and physically exactly like when I need it the most.
From one patient friend to anotherGod bless.
Hi, Marion,
They looked at the RFA treated site done in my local hospital and found incomplete burns of the tumor. The tumor shown rough irregular edges especially on the side of the tumor closed to the hepatic vein. That either means the tumor have regrown or the microwave ablation done previously was incomplete.The doctors there thought incomplete RFA was most likely the reason due to the difficult location. The PET scans,2 in a row with each two months apart, did not show improvement ; the radiologist at my local hospital who read my PET said the tumor was stable due to the relatively unchange of the SUVmax value.
But it was the relatively same SUVmax value made me worry, it should went down or decrease in a bigger % point even if account for the inflammation of the surrounding area of the tumor after ablation,I think.;plus the CA19-9 double the value between the two PET scans(37 vs 61) and therefore all of these findings prompted my action for a 2nd opinion right away.
It was always back in my mind that if I will ever have a 2nd opinion visit again, I will document it and let those patients and caregivers know what actually a 2nd opinion is and how it will go. so they will have an idea of what a 2nd opinion is and I am happy I have done so.I really believe knowledge is the key and if not, they will just recommended GEN/CIS to me on the spot and will not go though a more search of treatment alternative for me.With regard to the liver enzymes ,all are at the low end of the normal range.and that is a good sign.
God bless.
Hi, Kathy,
I appreciate you reach out and want to know about facts of this disease. Of course a lot of our members will give you emotional support as well.
I approach my intrahepatic CCA as pragmatic and sciencitific as possible; like your husband, I am stage IV too. And have survived for the past 57 months relatively free of side effects. Like you, I pray for miracles to happen, but I do not think it will be happened during my life time. Research takes a long time for everything. The relatively good news is that there were a couple highly respected researchers and oncologists during one of the conference that I went to thought that ,in a couple years there will be some or more immunotherapy agents approved by FDA and in “off the label” use ,it may be beneficial to our disease.
Each case of intrahepatic CCa is unique and different due to the stage and location of the tumors,the environmental and hereditary risk factors; and cholangiocarcinoma is a rare disease , therefore it is difficult to find someone’s disease presentation exactly like yours or mine; but knowledge is helpful in understanding this disease and will provide you guidance to discern ideas and opinions from those who said they know them all from his/her own research without accepting his/her own responsibility in the treatment decision making process later.
Let’s wait till the result of the CT scan to see whether the GEM/CIS combination will shrink the tumor to what degree.Blessings.
Hi, everyone,
I think I have to report something here before I will go to Mayo tomorrow.
1.To Jason with regard to Q& E section of ICCA; Dr.Gores did mention mTOR inhibitors is not a 2nd line treatment option since there are not ENOUGH evidence to support such use.
2.with regard to how he determine whether a re-resection is appropriated ;He told me that it depends on the time between each resection; shorter period NO ,but longer period is yes. Jason took much better notes than mine (Precise and down to the point).
3. Dr. Gores was only talking about ICCA in “meeting the professor section.
4. He is a physician scientist in the writing committee of the policy,therefore he looks at ICCA from the point of human biology (ie; pathways ) than treatments. (Please remember, below is my own interpretation of my conversation with Dr. Gores. and may not represent Dr. Gores’s original intent for the conversation.He will bear no liability with regard to the matter of our conversation)
We, as patients, should have this in our mind first( Dr. gores is a physician scientist). the reason is that,if I understand him correctly, the majority of the ICCA patients will have recurrences ; most patients who have ICCA actually did not have risk factors even there are stuides had been listed.
Chemotherapies are difficult to evaluate for its effectiveness.(ie: Gemzar vs Gem/cis-a 3 month difference on survival and it is only a practice standard and not a established recommendation ; there are NO recommendation chemotherapy after resection.
There is not a protocol for ICCA liver transplant because of high recurrences in ICCA patients;PET scan is insensitive for diagnosis and staging for ICCA;CT or MRI should be used instead for diagnosis purposes; TACE is not recommended ; Overall survival can be up to about 20 months for Y90 (TARE -radioembo)for large tumors ;RFA for tumor size<3cm;and poor prognosis for presentation of satellite nodules.Blessings.
Hi,
I know taking Dilantin is a risk factor.
Dilantin is used to treat seizure too ( ie: idiopathic seizure )God bless.
Hi,
Please refer to specific person (ie: pfox2100 or PCL1029) with specific question next time.
It is not uncommon in the sense that it is around 10% or so, but more important is that , please check out the link I suggested to start your research first.
Most people ,including me, state our opinions or our self experience only and by no means is a guide for treatment or what you have to do, the ultimate responsibility is the patients and their caregivers.
Be discern on your received answers from the web.God bless.
Hi, Gavin,
Thanks ,good job well done.
BTW, if I may ask everyone, is that really you want ( the extra 3 month of life) in exchange for quality of life with three month less on earth knowing that all the treatments is palliative in nature?
God bless.
Hi,
Sorry ,I do not know the answer. But can you ask the surgeon “is it possible to remove the edema content( ie: water or bile) using a needle through the skin.
Please remember ,I am not a doctor buy just a patient like your dad.
God bless
Hi,
It is not uncommon to have ” unknown primary ” for a diagnosis, may be around 10% of the cases.
The link below is a simple road map if you like to check it out.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=81006#p81006
God bless.
Hi,
I am in San Francisco GI Symposium now,
My suggestion is to wait after the results from your son’s radiologists reading then I will feel much better to ask favor from the doctors to follow your case.
Remember ,you are right, nothing is free in this world, simple 2nd opinions are free most of the time,but detailed ones are not; and you have to know which one to send first to maximize the benefit. They will prefer a face to face consult and therefore when they indicate for a ” full consult” from you, that means you have to pay to see the doctor for detail advice, and there will be a written report send to you GP if ask. No one that I know will give a written report for a free consultation.
Karen,RN from NW is very knowledgable ,but everybody wants to do business when able.God bless.
Hi, Danille,
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=81006#p81006
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=82813#p82813
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3713630/#__ffn_sectitle
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=84023#p84023
God bless.
Hi, everyone,
thanks to Willow first for this link;it is much easy to understand for all the patients and caregivers who wants to know.But apart from that, I think most of us need to read the rest highlight rows of topic that follow the” molecularly Targeted Therapy” that Willow have put out.
THE CHEMOTHERAPY CHALLENGE
WHY IS CHEMOTHERAPY SO TOXIC?
DISCOVERING THE MOLECULAR SIGNATURE OF CANCER
ONCOGENES AND TUMOR SUPPRESSOR GENES
REVOLUTIONIZING THE TREATMENT OF CANCER
EXAMPLES OF CURRENTLY APPROVED MOLECULAR TARGETED THERAPIES FOR SOLID TUMORS
SHIFTING THE TREATMENT PARADIGM FOR CANCER
PARADIGM SHIFTS IN MEDICINE — THE LONG-TERM MANAGEMENT OF ONCE-TERMINAL DISEASESThey are short but to the point to describe each item(ie: 10-15 min to read fo all);And will give you the current thinking and trend of the future in treatment of cancer.
i may be one of the few that will encourage people to get a next generation sequence(NGS) done in spite of the uncertainty that it is still in its infancy development and interpretation. The reason is simple: I am the
patient; and not a doctor. They may see NGS and the disease as a research tools and subject that is not specific enough for them to do the research;but I see the NGS as another possible chance to PREPARE for my next battle in defending or attacking this disease.
Chronic disease indeed for this disease.BTW, I will not be spend that much time here for the next 2 weeks ,I will attend the GI symposium,thanks to this Cholangiocarcinoma Foundation;and after that I will be in Mayo for a few days to evaluate the current treatment plans that I have.
God bless,
