pcl1029
Forum Replies Created
-
Posts
-
Hi,
I will be off site for about a week;but I will check in again to-nite just in case.
Gavin is sick for the past several days,”very tired” send him an email to chear him up if you can.BTW,Maggie,is the PSK from Japan expensive? can you tell me how much?
I did copy your email for Wendy.Wendy emailed me she has been traveling between US and Manila and does not have enough time to check on this web sites for info. at this moment.
she is among a few that keep in touch with me via e mail.Thanks for the above info.
God bless.Hi,Kat11,
thanks for your info. I will look into it and do some research.
BTW, I have the CC for 2 years.The toughest thing about cc is that the patient looks normal and fine even in the late stage of the game.He/she may feel just a bit tire but still can do all the stuff until last moment.That is why CC is a very DECEPTIVE illness even to the very knowledgeable and healthy person.So tell your father when the time is right about this.He need to see a liver specialist or at least a GI doctor who have treat CC before.Tell your dad current chemo treatment is much better than in the past and there are better medications to treat the side effects of the chemo treatment.
For you and your siblings,I will suggest when you reach the age of 45-50, try to get a CAT SCAN to rule out choledochal cyst because you did mention one of the brother having benign cysts;find out where was the cysts and it may help too.Again, please remember,I am not a doctor,I just want to share the info. I know with you.
God bless.Hi,
If I may, can you tell us about the lab result.did you know or can you find out what is the result of the PT and INR value?Is the INR >7? I presume you know what INR is because you did mention she is on Coumadin;if so the normal INR should be between 2-3. Did that doctor tell your mom about stopping or continuing the Coumadin? or any other instruction for that matter.
Just in case, if things getting worse go to ER and they will give your mom a complete work up better than just asking someone who did not seem to care.
You can always report him(the bad doctor) to the hospital or complaint to your mom’s doctor when he/she is back on duty.
God blessHi,
Since kat11 has no response to the above risk factor questions .
Base on two reports that I read;most likely the answers are congenital abnormality (birth defects)such as Choledochal cysts,Caroli’s disease and congenital hepatic fibrosis(only 12-25% of anomalies have a purely generic cause.)
God bless.Hi,Helen,
A urine dip stick test for cc in the near future?
Wow,”the hope is near and the dream will never die”,who knows this famous quote will also can be applied for CC patients like us in the near future.
Thanks for the info. and keep up the good work.
God bless.Hi,Marion,
They did not recommend the scalp hypothermia method because out of the concern that in one case study, after a patient who had used cooling cap finished chemo therapy,but later develop recurrent disease LIMITED to the scalp;subsequent treatment without a cooling device resulted in complete clinical remission.there were 7 other reports suggesting possibility scalp metastasis too.
there are case reports suggest that cooling devices may be contraindicated in patients with circulating tumor cells eg lymphoma or in those with liver dysfunction resulting in prolonged drug half-lives. I do not think FDA has approved any of those devices ;so I think all those cooling method are still under clinical trials.But I could be wrong.
God bless.Hi,
You can use the ginger root juice anytime for your daughter’s nausea/vomiting.
Chinese have use this method for thousands of years even for pregnant women .
I strongly recommend a 2nd opinion from Barnes Jewish Hospital as the other suggested.Your daughter is young and the age factor is on her side.
God bless.Hi,
I think at least a few years more before researchers and the drug companies can develop good biomarkers and/or chemo-sensitivity testing agents for CC.Hi,Ginger,
Ginger root will help your daughter’s nausea and vomiting;if you make it as ginger juice,the effect is pretty quick; it comes as capsules too and you can take it that way,but I don’t think its action is as quick as the juice.But if your are in treatment,then capsule comes in handy too.Please read “medications for nausea/vomiting”in the side effects forum for how to use the ginger capsules.Ginger root is an vegetable and you can use ginger when needed.
God bless.Hi,
Everyone reacts to drug differently.Gemzar is one of the mildest in causing the nausea/vomiting problem;that is why your mom feel good the first day and can go out without problem the next day.
Please read “medications suggestions for nausea/vomiting”under the side effects forum ; there are lots of different medications and if you discuss with your doctor to change to another one to control nausea,it will not be that difficult.In the meantime buy some ginger root from supermarket and cut 3 to four slices out ,chop it into little pieces and squeeze out the the juice to make a tablespoonful and give to her to drink it ;it will help the nausea.
If you can tell me what she is taking now for nausea and I can look it up and may provide more info. for you.
I do not think it is normal that your mom was doing so good in the 1st couple days after the Gemzar treatment and the next few days would be so different. I think the condition was not related to the Gemzar. I highly recommend you to call the doctor for consultation.
God bless.Hi,
I do not understand why the oncologist said that radiation will not work;I STRONGLY suggest you get a 2nd opinion from an “interventional radiologist”.
Oncologists may not always know the new treatments available outside their practice and SBRT is relatively new.
It will be of great benefit to know the size of the tumor in terms of like 3cmx2cm or 3cmx4cm ( in 2 or 3 dimensions) and the exact location–ie: in the bile ducts inside the liver or the bile ducts outside the liver since you mentioned your dad had the bile duct cancer 5 yrs ago; It will provide more treatment options for the tumor.
Again ,2nd radiology consultation is highly recommended.
God bless.Hi,Lyn,
I am a patient of CC for 2years.
Base on what I know,which is not too much about radiation; Novalis TX machine is used to deliver radiation -SBRT (stereotactic body radiation therapy) directly to the tumors of the lung,liver,bile duct and the brain.The success of the treatment depends on the location of the tumor.
You did not mention what type of CC (ductal or intrahepatic) that your dad’s bile duct tumor is;but my guess is ductal CC.If this is the case,PDT will be another choice if not contraindicated.Post -marketing experience reported that “myocardial infarction have been reported rarely with the use of Gemzar” either as a single agent or in combination with other chemo.
Base on what you described about your dad’s CC treatment plan,I will strongly recommend you to get a 2nd opinion from another radiologist and an oncologist to make sure. How old is your dad and where does your dad live? it will help other members to recommend a good treatment center and doctors for your dad.
God bless.Hi,
I am a patient also. May I suggest you call the oncologist to clarify the 1.8cmx1.1cm lesion again to see whether it is cancer or not.
I did do a research on your posts and you had mentioned that you have 2 oncologists;Dr, Lee and Dr. Kemeny in 2 different locations.May be you can consult them both.
If they are not sure,and if your insurance policy allowed,get a PET scan done then will know for sure.
This suggestion was also mentioned in one of the member called cobbmkc@mchsi.com on 6/19/2011 under discussion forum when she answered your questions. She wished she had done a PET scan when she discovered nodules in her lungs while she was still on the liver FUDR pump.As Marion said,the lesion may or may not be anything; but I think PET scan will be a good idea if the 2 oncologists have different conclusions about that lesion and especially you had mentioned on 6/19/2011 about ” cancer had spread to the surrounding lymph nodes.”
God bless.HI,
In a poster study at ASCO 6/2011,they demonstrated that any decline in CA19-9 levels during chemo therapy was predictive of improved outcome in patient with advanced pancreas cancer. The range they given was (2-492,241).On the other hand, a report I read , a 77 year old patient who had BENIGN biliary tract disease had a CA19-9 of 98628.;and a 74 yrs old cholelithiasis patient had CA19-9 of 14950.
The increase of CA19-9 could be associated with chronic hepatitis C infection,alcoholic liver disease,chronic hepatitis B infection,primary sclerosing cholangitis and primary biliary cirrhosis and other inflammatory disease .
CEA>30 and CA19-9>600 are indicative of unrectable CC on one report.
However the TREND of CA19-9 is more useful than a single CA19-9 value in
monitoring the treatment plans such as chemo or the function of the stent placement.
God bless.Hi,All,
As a Chicago Bear Fan,The only regret that all the Chicago Bear Fans had was that Payton did not given a chance to score a touch down during the Superbowl title game in 1986;instead of Payton,the “Refrigerator Perry” given the chance because of his size. Payton was so loved by his team mates that,according to the Punky QB-Jim McMahon,he disobeyed the coach and changed one play himself to allow Payton to break the record to become the running back of all time in the 1985-1986 season. Coach Ditka later even regreted that he did not give the chance to Payton to score the touch down in the Superbowl.
Payton was indeed well loved by his fans . I only knew he died of liver cancer instead of CC. at the age of 46.
God bless.
