pcl1029

Hi, everyone,
yes, your contribution of your experience in full will help other patients
check the link below: i am just amazing at the timing of my thinking.

http://ascoaction.asco.org/Home/tabid/41/articleType/ArticleView/articleId/322/ASCO-Begins-First-Phase-of-CancerLinQ-the-Development-of-a-Prototype-of-a-Breast-Cancer-Specific-Rapid-Learning-System.aspx?et_cid=29644254&et_rid=463567444&linkid=LEARN+MORE

God bless.

Hi, everyone,

I am a patient,and I have already instructed my son to notify this board when the time is come to report the final experience to this board. I know it is tough to do so right away like Kandre in South Africa did, But you can wait until everything is back to normalcy,then give us the least information that you can or in details.
The reason is very simple ,Your action really helps us to collect the outcome and follow the patients to the end so we can provide members and new patients a much needed statistics about the final stage of our disease ,so they can prepare for themselves emotionally and physically.I think this is one of the ways that patients or caregivers can help this foundation for it’s effort to compile the patient experiences in FULL.

But most important for all of us is ,in doing so, YOU, the patients and the caregivers will actually provide your voice and help FDA to develop better new oncology drugs for accelerated approval and better quality of life when come to assessment of the patient.

FDA now is trying to use ” Symptom endpoints”—patient-reported outcome)” as a disease end point much or so like OS,PFS ,DFS to increase the outcome of treatment .The advantage is that patient to provide perspective of direct clinical benefit and short comings of the drugs they use to the clinicians, so they can/or may use the “symptom endpoints” as part of the assessment tool in treating the patient. In doing so it will provide the maximum clinical benefit to the patient including the aspect of “quality of life” . This is also can be done by you each time you see your doctors and report even the small changes of the disease condition.

God bless.

Hi,
For constipation,as well as for other side effects of medications;you can always find answers about this disease from our web site, under the experience forum,title”adverse reaction and side effects”.
here is the link to your special needs.

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7001

God bless.

Hi,
Please ask the doctor to call in a RX for your son so you can pick it up at the drug store.
Antispasmodics/anticholinergic agents for GI tract like Bentyl ,Levsin(this also come in as sublingual tablet for faster action) Donnatal tablet or elixir. Belladonna tincture etc.on an as needed basis, or just for the period of time when symptoms occur.Do not take them on a schedule basis unless your doctor ok with it. I think a few of them do not require RX; just go to Walgreen or CVS to ask the pharmacist for recommendation;you may be able to get some antispasmodics for GI over the counter without Rx; Prevacid or Prilosec are Proton pump inhibitors and is not effective for the condition your son had.It is for the control of the stomach acid.
so, first go to drug store for recommendation for OTC products and 2nd, call doctors for RX for more precise and stronger RX for the condition.
And please say hi to Trevor for me.
God bless.

Hi,
Those are the side effects of Zoloft(part of the SSRI family); Taking half the strength(25mg) may be a good idea to titrate the dose gradually up to the adult dose of 50mg. it will take some time(in a week or so) for you to notice the benefits. Another choice is Xanax, an anti-anxiety agent which ,like Zoloft will cause a bit of drowsiness but not the side effects of nausea that much for
Xanax.
God bless.

Hi,
You can tell your husband the stents are blocked and the bile is no where to go but up thru the stomach and out. He may get itching soon because of the bile precipitate affecting the skin. sooner or later he has to go the ER;then why not sooner?
You can tell him that the last stents was good for 6 months as compare to the 3 months he got the stents changed ; so if he goes to the hospital,this time he may extend it longer than 6 months next time with the new stents change.
As a patient myself, the stents procedure is much an easier choice than having chemotherapy or not.
If he don’t want chemotherapy,tell him I,as a patient myself, will support him totally even if I may disagree;but not to go to ER to find out what the real problem is not the decision I would make as a patient.
God bless.

Hi,
It is not uncommon to have epidural or spinal pain pump with marcaine, dilaudid , mophine and clonidine or the combination of it.
A short paragraph copied below for your info about the procedure.

“Anesthesiologists, neurosurgeons, and other doctors who specialize in spine disorders implant the pump. Surgery is performed as an outpatient. It is a two-part process and usually takes three to four hours. You will have anesthesia during the procedure. Most patients are discharged to home the same day as the procedure.

The catheter or small plastic tubing is inserted into the intrathecal space through a small incision near the spine and secured there. Careful placement of the catheter is important as the medication is only beneficial if placed in the area surrounding the spinal cord, the intrathecal space. Once the catheter is in place, an extension catheter is threaded under the skin around to your abdomen where the pump will be implanted.

Next your surgeon makes a four to six inch incision in the side of your abdomen, below the waistline. The pump is then inserted between the skin and muscle layers. The catheter is then attached to the pump. Medication is then allowed to flow from the device through the tubing.

Positioning of the catheter is checked with fluoroscopy. Fluoroscopy is an imaging technique using a continuous X-ray beam that is passed through the body part being examined. You are placed between the X-ray beam and a fluorescent screen. The image is transmitted to a TV-like monitor so that live video images can be played. This allows the physician to watch the procedure he/she is performing to ensure proper placement of the catheter. It also allows them to check and make sure the medication from the pump is delivered correctly.”
A much detailed and longer version for you in the following link.if you do not mind the graphics.

http://www.concordortho.com/patient-education/topic-detail-popup.aspx?…

God bless.

Hi, Gavin,
I borrowed the link to update the “overview of cholangiocarcinoma and hope you don’t mind.
BTW, it is hot in Chicago,I was told this is the hottest year in the history of Chicago. Say hi to your mum for me,; I went to see the cartoon movie”Brave”
with my kids.(>21 years) and the story is worth the price of the tickets and even an old guy like me shed a few tears about the bonding between a daughter and her mother.
God bless.