pcl1029
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pcl1029Member
Hi,
May I ask what are the names of ” all anti-nausea meds;” your mom had taken.
If I know the names, I may be of help to you in finding something for her nausea/ vomiting issue.
God bless.pcl1029MemberHi,
Sorry,I don’t know about the answer.My guess is after finishing 2 or 3 cycles of treatments.(2-3x17days). For blood test,you need to see a trend of monthly results rather than a single test score (ie: in CA19-9).
Below is a link about the response rate and overall survival stats if you want to know.
http://www.discoverymedicine.com/Daniel-M-Geynisman/files/2012/08/discovery_medicine_no_74_daniel_v_t_catenacci_table_1.png.jhtml?id=2God bless.
pcl1029MemberHi,
No body wants to wait 4 months or so for treatment. Cancer cells divide and multiply at a rate of doubling its size every 3-4 month in general ; Most CCA are of the slow growing kind, some are faster and some are slower.
My personal experience was ICCA grew from nothing to a size of 2.5x3x3.5cm in about 10-12 months on my second resection of the liver. But I saw other member on the board that his/her ICCA grew about 2cm each in two dimensional description(ie: from 11x12cm to 13x14cm ) in just 2-3months time. ECCA are in general smaller in size, more lymphatic and perineural involvement as compare to ICCA.
Ca19-9>129 is indicative of cholangiocarcinoma (CCA) if not definite.
Oral capecitabine may be of value if Gemzar don’t work.I am only a patient and by no means have the expertise of a medical doctor.And of course the health system is different from the States and your country,therefore it may have difficulty to get capecitabine approval for such use by your oncologist in Australia without tumor appearance.
In the mean time, you can try Oncozac, an immunomoderator without prescription ( get info. from the internet )to boost the immunity of your father’s immune system.
I hope the above info helps.
God bless.pcl1029MemberHi,
It is impossible to suggest an effective clinical trial without knowing of what kind of cholangiocarcinoma (CCA) that you may have.
Below is our web site informational link onclinical trials available to different types of CCA.
Since you are living in Maryland, clinical trial # 46 TIL conducted by NIH may be worth investigating. we have a member on this trial not long ago and you can look it up for further info.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=70794#p70794
http://www.cholangiocarcinoma.org/clinicaltrials.htm
God bless.
pcl1029MemberHi,
As long as the size of the tumor are=3cm and the number of the tumors are no more than 3-4; then RFA will be as effective as surgery if done correctly.
In general, the size of the tumor double in size every 3-4months,not counting the growth of the tumor density because the lack of data.
RFA is a very easy procedure to take, patient can go home the next day and not much pain or suffering afterwards.That is at least holds true for my experience. But of course, if the sizes become bigger,then surgery is much preferred.
God bless.pcl1029MemberHi, Jeff’s Mom and Dad,
As you know I am only a patient and not a doctor; but I have a suggestion for your son if I may.Ask the doctor before or at the time of biopsy to see whether s/he can get more tumor tissue sample to have a chemo-sensitivity test done for your son.That is to see which drug is more sensitive to your son’s cancer.
In this way, within a couple weeks, the doctor will at least have a better idea about which drug or drug combination will most likely work for your son. HER2/neu is only one biomarker apart from KRAS,BRAF,EGFR,PTEN, TOP2A, TOPO1,TS,ERCC1 and a lot more.Sorafenib (Nexavar) has been mentioned to have some success for CCA patients when I asked my liver specialist if nothing works on the chemotherapy agents side during my consultation .Nexavar is a multi-kinase inhibtor to inhibit cell proliferation and the VEGFR2/PDGFR-beta signaling cascade to inhibit angiogenesis. So, if you think this is an appropriate suggestion, you can ask your oncologist to see what he thinks whether Nexavar is suitable for your son or not along with using TAXOL at this time.
http://chemocare.com/chemotherapy/drug-info/Taxol.aspx
http://www.drugs.com/sfx/nexavar-side-effects.html
God bless.
pcl1029MemberHi,
The medical term for radiation treatment hypersensitative skin reaction is called ” radiation recall dermatitis ” RRD in short.
If the radiation involved an IV chemotherapy,ie: 5 FU then the RRD will appear early ( minutes to 14 days) and usually last for a couple of weeks. But if the chemo sensitized agent is by mouth ie: capecitabine , then will have a longer lag period( a few days to two months) and may last for months—uptodate.com
BTW RRD may also related to the radiation dose patient received enough to trigger the RRD to occur.
Another reaction is called ” radiation enhancement” by which the hypersensitity SIDE EFFECTS resembles RRD. It can be localized or extend beyond the irradiated field.
God bless.pcl1029MemberHi,
Radiation treatment can also be a reason to cause acute or delayed type of hives, angioedema and welts hypersensitive reaction.
God bless.pcl1029MemberHi, Kris,
You are a happy warrior , your positive attitude shines through in your message yesterday even the result was not what you expected. It takes a lot of courage to report those unexpected occurrence.
This disease is unpredictable ,difficult to diagnosis and prognosis is uncertain. But there are more research being done for this disease and hopefully some good treatments will pop up in the future for all of us. However a magical bullet is still far beyond reach .That is why I pray each nite and thank Him for the good fortune God give me all these extra days since my diagnosis in May,2009. Only He knows when the time is come for each of us. your joyful spirit and courage will lift up a lot of others on this board. Thanks and
God bless.pcl1029MemberHi,
Are you on any chemotherapy or targeted agents? Or any medications including over the counter remedies ?
God bless.March 11, 2013 at 7:54 pm in reply to: New to the site – concern about quality of life for mom #69579pcl1029MemberHi,
Where is your mother currently receive the diagnosis and treatment suggestion? and who are the doctors?,It will be useful for other patients if they are in the same situation and areas looking for help.
Since your are in the Chicago area and I am too. I will recommend Northwestern Univ. interventional radiology consult if you are ready to go for radioembolization. they are the leader in this field internationally.
However, the patients over the age of 65 on this board who had received radioembolization with Y90 did not have the best outcome that we hope for,especially with other health issues involved. This will my only concern for your mother. Quality of life over quantity;providing the best supportive care are also viable ideas, But most of the medical literature will tell you age is not a risk factor in deciding treatment plans but comorbidity does. If your mother’s tumor s do not metastasized to other parts of the body, without treatment, there is a good chance that she can see her 79th or even 80th birthday apart from counting in the other health issues. CCA is a relatively slow growing cancer, In my case, my most recent resection in 2010 indicated it ,the tumor grew from nothing to a size of 2.5x3x3.5cm in roughly one year.
I am a patient of this disease for 46 months now but make sure you understand I am not a doctor but just a patient having the same disease as your mother. so my observation is purely on my own without medical research to back me up. therefore medical oncology and radiology consult are needed if you want to make a sound medical decision.
God bless.pcl1029MemberHi,
I am confused , I think I understand both of your good intentions, therefore should I just provide my point of view to patient just through my emails to individual patient ONLY and report only those good news here and ignore the reality of medical science. I know most people come to this board for emotional support far more than for other reason, but I think it holds true too that others would like to learn about this horrible disease for medical guidance.
God bless.pcl1029MemberHi,
It is fine to use anticoagulant like Coumadin, Arixtra or enoxaparin sodium (Lovenox) oand a newer type of anticoagulant like rivaroxaban (Xarelto) as prophylaxis in DVT (deep vein thrombosis) and the formation of blood clots in the portal vein.
It is common that cancer patients have coagulant problems and thus warrant to use of blooding thinning agents on a long or short term basis. It is that often used sentence in the medical fields that ” the benefit out weight the risk” is the suggestion or reason to use medications, and this is one of the example. Management of the side effects by your oncologist is the key.
God bless.March 8, 2013 at 11:03 pm in reply to: Chemotherapy Prolongs Survival in Patients With Cholangiocarcinoma #69475pcl1029MemberHi, the abstract number is 219
Fill in the abstract number 219, on next page,click the abstract title.
God bless.pcl1029MemberHi,
I am a ICCA patient like your MIL and I am not a doctor. I am 63.If my guess is correct , since your MIL has lymph node involvement, she is in stage IVA rather than stage I, therefore it doesn’t matter how many lymph nodes were found positive. The PNI just mean that the tumor had spread to the nearby nerves and it is not involved in the classification of the stages.
I had 15 mm of clear margin after the removal of the entire left lobe ,14 month of adjuvant chemotherapy after resection and it still came back.
So the 50-70% recurrence is real.Lainy and Randi ‘s suggestion of 2nd opinions is highly useful. I went to Mayo Clinic by just calling them up, told them what is my diagnosis, what I want to consult with.( for me, after my second resection, I ask for liver specialist Dr. Gores and a medical oncology consult on site there.)
With regard to clinical trial at this point,I do not think you MIL will need that at this time. I will persuit it only when current available treatment regimens failed.
Besides ,for ICCA, there are interventional radiation treatments available.God bless.
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