pcl1029
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Hi,
I brought your question (the entire message you wrote to this board)up to the attention of an interventional radiologist friend of mine who did chemoembo and RFA on me.
He agreed with your oncologist that the CA19-9 will rise and the duration is different from patient to patient;just look for the trend is the key.
However,he disagreed on the fever which lasting for 4 month or longer.He said it should not last for that long for a fever if it is purely the result or side effects of theY90 radioembo. He told me a complete work up may be in order to find out the FUO.
God bless.Hi,
Haldol(haloperidol) is an antipsychotic agent for hallucinations,sedation;for overdose treatment of opioid; is also used as a powerful antiemetic agent in chemotherapy;analgesics(combined with other agents);and like Thorazine, it can be used for hiccups too.
I do not know any other FDA approved uses for haloperidol apart from above being mentioned.
God bless.Hi,
i do not want to sound stupid,but did your husband recalled the radiology technician did give him the injection 1 hr before the PET/CT scan took place.?
and did you look at the film or ask the doctor did other places of the body (ie: the bladder area light up too or NOT). the reason is if the other parts of the body lights up and the tumors don’t;that means the technician did give the FDG to your husband;but if there were no parts of the body lighted up, that might mean he did not have the FDG injection.(this is my guess only,)
So What to do Now?
I will ask to get another CAT scan with contrast or MRI with contrast to compare with the most recent ones that your husband had, and the oncologist should have a pretty good picture on the tumor.( some large medical centers only used MRI or CAT scan for CCA treatment.)
God bless.Hi,
As a patient myself,nothing is more important than what I wanted for myself;that is including medical and emotional advice and TREATMENT.
However, the average patient must be informed about his/her illness , current condition and prognosis by a medical professional ,in this case, her GP or ONC doctor directly. this is part of the professional responsibility of the doctors . So all you need to do is talking to her doctors and make sure your mom is truly and accurately informed about her disease state and prognosis;in the way, your mom has to accept the truth and this will free you from confrontation with your mom. After that ,it is all up to the PATIENT to decide what is the best for his/her future .
God bless,Hi,
Treatment of UTI depends on symptoms;did she have a low grade fever or otherwise?
Did she have burning sensation when urinated?If so, ask doctor to prescribe pyridium and take it three times a day for 5-7days;
keep hydrated(6-8glasses of fluids/day);
Did she have a urine culture before starting antibiotics like Bactrim DS or Septra DS? and what are the culture report says?
God bless.Hi,
the following is the quoted sentences from your message/.“So, while I continue to fight, I also pray every day that God might help me to live fully in this moment, not knowing what the future brings. At this moment I have the support of my faith community, am healthy and active, and have been granted more quality time with my beautiful loving wife. I am blessed.”
Your are indeed blessed by God’s Grace;only a handful of patients (including me) have God’s blessing for a second life even as, what you said,not knowing what the future brings is quite true. For me , I know I have to be hurry and give backa much as i can in my retirement to serve Him for his Grace toward me. I hope others will do the same.
However, your also mentioned about this web site helping you and changing your attitude to become proactive rather than just accept what was told by an inexperienced doctor of this disease is also a powerful statement for other patients or caregivers and also a tribune to the founders of this cholangiocarcinoma foundation about their vision and selfless hard work to continue to provide emotional and medical info. support.
For this I am always grateful for the support they provide for me whenI first encountered with this site.
God bless.Hi,
Radiation and /or chemo therapy may be the standard treatment at this point.
But thru interventional radiologist using radioembolization for that 8cm tumor that may grow into the liver and IMRT or SBRT for the bifurcation part of the tumor may NOT be out of the question and if it can be done ,it may give your sister a few more good years.
The question here since I do not know the exact growth and extend of the Klastin tumor , the exact location ( ie: is it grew 100% out side the liver) ;please also consult a radiology oncologist for the combination use of radiation and/or chemo agents.
Even if your sister is young at 46. I think she may have already suffered enough.
So to consider ” quality vs quantity of live” may not be an impossible idea.
Just a thought,send CT scan report to Dr.Keto or Dr. chapman to settle once and for all about the possibility of surgery is also a good way to let you know you had try your best for your sister with regard to top opinion on this field.
God bless.Hi,
I am sorry I can not answer to you faster today due to the fact that I am in Seattle visiting and only can check messages when the wifi are available in each hotels at nite.To give you some feed back about the medication or targeted agents is not difficult.
It is not a really big thing if the tumors grows only in < 4mm. In some case this tiny increase measure is not 100% accurated from reading directly from different monitors from the radiologist's office.
Since you will be started on the same chemo agents like 5fu and irinotecan,
The difference is of whether you should use Tarceva or verlaparib.
Tarceva isFDA approved to treat pancreatic cancer and it is also used in bile duct cancer in ” off the label” treatment with acceptable result . Verlaparib is a A PARA enzyme inhibitor, it has to work with other chemo agents to be more effective in killing the cancer,it Is a new agent used in clinical trial mostly and has not been approved by FDA in treating bile duct CA but doctors have the right to use and test the drug in ” off the label” treatment. It shows activity in solid tumors ( ie:breast CA when used with other chemo agent and in peritoneal tumors.)
In general, most the targeted agents like Tarceva and Nexavar, which you were on for 18 month,will be very effective at first ,then drug resistances developed and undermined their long term usefulness and effective.
I actually like to use Tarceva as my choice, since most of the side effects of the verlaparib are still not completely known. I remembered my sister-in-law tried a new drug called Md2206 and developed hyperglycemia And had to stopped the trial.
Please know that I am not a doctor and the above statement is at best, my best educational guess only. If you are lucky that you can choose ; I will suggest to follow you gut instinct which I believe it is sometimes ,if without emotion, is The Holy Spirit working on us and show us the way.
God bless.Hi,
I think getting an interventional radiologist to see whether either chemoembolization or better ,radioembolization can be of any value for the positive margin in the liver, and other procedure like IBRT is appropriated.. The reason are less side effects and provide the best chance for long term management of the disease.
Your grandma had already gone thru a lot. I will check out above first, Our Lainy will be a big help to you since she go thru the whole thing and live in your area.
There are limited value of the current chemotherapy for this type of cancer and the side effects is not east to tolerate.
Either Xeloda alone(pill form) or Gemzar are among the least side effects of most of the chemo agent,
If this is me,myself, that is what I will do , if I am in my70s. Less suffering and a better feeling for all of people who surround me.
God bless.Hi,
If you regard cholangio intrahepatic CA that you had is a chronic disease, and manage the disease as doctor required you to do so,;keep up to date on the new treatment and potential drug development to “cure” this CCA.
Then you are an informed patient and you will not regret about the future outcome even if it is not what you exactly anticipated.
Others will come in soon to cheer you up.
God bless.Hi,
Sorry we have to know each other this way thru a disease web site.
The acid reflux symptoms for a long time sounds very familiar in my intrahepatic CCA experience.
If second line chemo donot seem to work, clinical trial and interventional radiology treatment will be other choices.
Like Gerry who responded to your message a lot of our members are from UK. They are knowledge and helpful .
God bless.Hi,
Should I feel bad I have cancer? NO.
Should I be shameful I have cancer? NO.
Is dying of other diseases better than dying of cancer because people are afraid or misunderstand cancer and will cause you feeling shameful ? NO.
It is our responsibility,patient and caregivers to let others know cancer is a disease,like other diseases, need to be understood;need to be educated ;need to be hopeful when it present it’s chance and need to be practical to accept the outcome after all the hard work you put in and still get nothing in return. It is not much different than other diseases.
Should I be happier if I die of other diseases than cancer? Yes, a full stroke while having fun. But not suffering unnecessary without knowing.
God bless.Hi
I will be very interest to join this FDA advocate.
If you can please send them a recommendation for me, so
I can start the process as soon as possible.
God bless.hi,
The redness of the hands are side effects of the Xeloda, and the doctors will cut your dose down a bit next time you will visit him. but if it is only 4 days left and you will have 7 days off the Xeloda.
If your situation happens to me like with 4 days left and no blisters and not like purple-red in color and not swelling,I will take it without changing the dose. But I am sure the oncologist will ask you to do otherwise.
God bless.
