pcl1029
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Hi, Mary,
I think if the GEM/CIS systemic chemotherapy works , and if you can tolerate the regimen, then you should continue .
I personally do not believe stats when I read the medical articles; I just want to know how the articles can help me and others down the road to improve our odds for better treatment plans.
You still have other therapy like targeted therapy agents and immunotherapy agents and clinical trials you can join to fight this disease and that is why I read the articles when I am in situations where I need those information to provide a better understanding of my CCA.
I am fine(stable), but I will continue to research and test the knowledge that I have learned by having this disease.God bless.
Hi, Porter,
The cut off points of 2.5-3.5 means that:
if your SUVmax>3.5 you MAY have tumor activity within that tumor.(positive)
if your SUVmax is 2.5-3.5 ,you may or may not have any meaningful tumor activity even the “hot spots” light up on the PET scan. (stable)
if your SUVmax<2.5, the possibility of having active tumor is less. (negative)
However, the above values and judgement by the radiologist depends on comparing the overall uptake of the radioactive glucose of the tumor in the liver to the blood pool around the lungs, or other point of reference chosed by him/her for that single PET scan.
The SUVmax value also depending on your height weight at time of the scan as well as the dose given by the radiology technician and the waiting time (usually 60 min.) between the injection and the start of the scan; the breathing (movement of the chest)of the patient also may be one of the factor that can affect the value.
BTW, inflammation caused by infection will also cause false-positive results of the SUVmax value.But the most usefullness of PET scan is to compare YOUR most current one to the one YOU had taken before(ie: every 3 or 6 month etc.).That is in that series of comparing scans that will provide you the best answer of your disease progress.
so even you had a SUVmax value of 4.6 from your July 27 message . that value should be compared with your most current PET to see whether your chemotherapy is working or not.
According to the radiologist I talked to,the SUVmax value is relative and not absolute .
I hope the above can help a little in understanding about PET scan.God bless.
Hi,
and make sure you wash the hands to get rid of the hand sanitizer when you do not need them any more. You do not want to carry dead germs on your hands when you prepare food or go to bed at night.
I use isopropyl alcohol to wash my hands at times but most with soap and water over 15 seconds between fingers.God bless.
Hi ,
According to guide lines.by uptodate.com(a medical web sited for MD )
For advanced Unrespectable CCA,we suggest chemo radiotherapy followed by chemotherapy such as 5FU or gemcitabline. For extra hepatic cholangiocarcinoma .
For intrahepatic CCA ,RFA,chemoembolization ,radioembrolization etc.For palliation of jaundice patients,who have Unrespectable CCA, STENT placement is recommendation..
Below link may help to guide you what to do on different stages.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=81006#p81006
God bless.
Hi,
the link below may help to guide you for steps of searching for knowledge about this CCA.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=10757
God bless.
Hi,
If you never get a LIVER surgeon for a 2nd opinion. wait for Dr. Chapman’s answer may be a wise choice.
below link may helps too if interested.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=10757
God bless.
Hi,
Is the hepatologist that you work for is also a liver surgeon?
Do you know where is the 4cm tumor located? in the upper or lower part of the live or in the common bile duct? is the tumor compress the portal vein ?
Only if you want chemotherapy should you consider MA Anderson at this juncture.
For locally advancedCCA, Chemoradiation with 5fu followed by chemotherapy like gemcitabine is also one of the recommendation for CCA treatment by NCCN.God bless.
Hi, Caroline,
I am a patient of this roller coaster disease for the past 55 months. What a ride, It takes knowledge,courage , patience ,determination and God’s Grace to navigate on this long and winding road. It is definitely not a east journey ,but along the way, you will find out a deeper understanding of ourselves.
A few of us,the patients, have been 5,10 and 15 years survivors and the new targeted therapy and radiation treatments can also extend the lives of most of us if we choose to do so.
Welcome to the discussion board.God bless.
Hi,
For interventional radiology at NW ‘please check the link below.http://io.nmff.org/physicians/
God bless.
Hi, Kerry,
What are the doctor’s opinion on your father’s case when your brother went to the appointment with him last week.
The best place for CCA is a multidisciplinary team approach from Mayo clinic or
Washington University at St. Louise, to review your father’s case.
but if you have already known what you want to do in general(ie: after your brother’s trip with your father to see the doctor) . Northwestern University is famous for its interventional radiology department to perform RFA,IRE,microwave albation,cryoablation ,nanoknife chemoembolization and radioembolization.
I think for medical oncology(chemotherapy) consult, either univ. of Chicago GI oncology or Northwestern and Rush will do a fine job.
God bless.Hi, Don,
As I wrote to you on the other message, 1cm=10mm,so mm is 10 times smaller than cm;and good news to you.
mL may refer to the volume of the tumor(lengthxwidethxthickness),but I am not sure about it. mL is not that often mentioned in the CT scan reports that I come across with.
and since your oncologist had told you about his comment on your scan.I will not attempt to do otherwise.God bless.
Hi, Kerry,
I live in the Chicago area, Can you tell me who are the interventional radiologistand oncology radiologist you will consult with.
Thanks and
God bless.Hi, Don,
since your oncologist told you: “Secondly, although the report seems to me to indicate the nodules have grown, my Oncologist indicated the nodules were stable and he was not concerned about the minimal growth indicated on the report -” I will not attempt to do otherwise.I did notice in the past ,you may have kindey stones of other related problems (like pain or bloody urine) due to hydronephrosis was mentioned in your message. Hope everything is taking care.
In addition 1cm=10 mm.,therefore the smaller(mm) used is 10 times smaller than cm that the States and Canada normally used for measurement.
mL looks like a measurement of the volume (ie:10mmx15mmxthe thickness) of the tumor rather than the lengthxwideth only (ie:10mmx15mm);but I am not sure for that.
God bless.Hi, Marco,
Your father is 74 years old, and if the tumor size is<3cm or no more than 3-4; RFA or microwave ablation by interventional radiologist(IR) if thelocation of the tumor is allowed for such procedure. the above procedure will be much easier on the patient. I had microwave ablation 3 times; no side effects and can be home the same day. It is an out patient procedure. there are no radiation involved in the ablation procedure. so you need not worry about doing the RFA after your father had already had SBRT(radiation).
BTW, i had one microwave ablation done on my right lobe at the top of liver near the middle of the right hepatic vein in segment 8 size is about 2cm and posterior(the back side of the liver). everything went well. that was about 3 month ago. If I were your dad, I will ask for a 2nd opinion from an IR.Now ,to answer your question, yes, depends on the health condition of the patient and his/her other health issues(ie: high blood pressure,irregular heart beat etc.); a patient,for example like myself, I had it done 3 times when my CCA recurrence the last 2 times. I was 61 years old at that time. The maximum times that my liver surgeon have performed opened resection on the same patient is 5 times when I asked him the same question on my third resection that you are asking now.
Good luck andGod bless.
Hi, Hans,
The way you remember her is by far the best one I have noticed on this discussion board lately;meaningful to share her joyful spirit with us rather than emotional charges that do not lift up our spirit in a way like you do.
I am for one that still need the other candle burning till they find a cure or meaningful treatment plans for this disease and in that way, Kris for sure will enjoy the success and smile for all of us.I had never directly replied or initiated messages with her since I came in the later part of her journey.But I did read about her messages and made me understand ” anger and sorrow “will do me no good; she is part of the reason,among others,to make me see things differently and along the path to become more positive than negative in view of my disease.
I did notice that she was always joyful in spirit even in the mist of all those tough decisions and treatment for her disease. Her spirit was as bright as the ” yellow daffodil ” she posted instead of her own picture.
Thanks for the memory.God bless.
