Forum Replies Created
July 13, 2017 at 4:41 pm in reply to: Hello from Houston, first post, sister with Cholangio #95262
My thoughts are with you all, and I am deeply saddened that you have had to experience this.
Thank you for sharing Myrna with us.
Peace and blessings,
KarenJuly 10, 2017 at 9:45 pm in reply to: Hello from Houston, first post, sister with Cholangio #95256
My heart is breaking for you and your family for all of the sadness and grief you must all be feeling. I am so sorry that this is happening. I hope that Myrna will improve over night after her stent exchange and that she is resting peacefully.
Is your family taking turns staying with Myrna over night?
KarenJuly 8, 2017 at 12:35 am in reply to: Hello from Houston, first post, sister with Cholangio #95246
I am really thankful for your response, and to hear that Myrna has responded well to supportive treatments. The human spirit is awe-inspiring to me, and it must be so wonderful to see Myrna more alert.
There are many postings on this forum which discuss single agent treatment with Gemzar, and from my knowledge, it is much easier to tolerate for some patients than the Cisplatin.
I know that every day will be a challenge, but I hope that this forum is able to lend you some support even if virtually.
-KarenJuly 7, 2017 at 8:51 pm in reply to: Hello from Houston, first post, sister with Cholangio #95244July 7, 2017 at 12:26 pm in reply to: Hello from Houston, first post, sister with Cholangio #95238
I am very sorry that Myrna has been readmitted, but do so hope that she is resting comfortably.
Everyone on this discussion board truly understands the fear, sadness, and shock which comes from the rapidity of this cancer, and how your family (and you) must be struggling to make sense of it all.
I personally am so glad that you are here though, and are sharing Myrna’s story with us.
Cisplatin can be so harsh, Myrna may just need a bit more time to recover along with inpatient support. It will be a useful time as well to discuss the current plan, and be together as a family with her. My sincere hope is that she will rebound with fluids so that she can be discharged.
Thinking of you all and keeping my fingers crossed,
<b>How to find health care information that is accurate and reliable</b>
It is important to remember when doing your own research on this cancer or any other medical issue, it is good practice to turn to reliable and accurate information as a basis for your health care decisions in addition to your physician’s input and care. General web searches <b><i>may</i></b> provide access to information which is accurate, but more likely than not lead individuals to websites or people/groups who<i> <b>claim</b></i> to have performed real research on their chosen topics but in fact, did not.
Read studies, learn how to decipher the scientific language, or use sources which are accurate and written in non-medical language such as http://www.medscape.com/
Here are some websites which provide information which is reliable, accurate, and up to date.
How do you find information which is believable/reliable when there is so much information out there?
Here are some tips from UCSF on how to find accurate information when doing your own research.
When I do research on a medical topic I will only go to certain places to find this information and will look to see how old the information is. Anything over five years old is less desirable than more recent studies as everything in the medical world is constantly being updated/is changing. Additionally I will look to see who sponsors the website. Is it a .org, .edu, or .gov? Websites with these addresses are sponsored by non-profits, universities, or the government and are therefore more reliable than a .com.
Does the website have editors, or is it written by one person? Does the website link their claims to actual studies or do they use testimonials only? Testimonials do not prove that their product or idea works. Please think about these things when reading information on the web.
Here are some of the places I go for information:
The information provided is not intended nor implied to be taken as medical advice. Please consult your health care provider if you have questions or concerns.
- This reply was modified 2 years, 10 months ago by karend.
I LOVED reading your posts today Michelle!
Sending you a big hug from New York
No words….my heart is breaking..
Mucositis management for patients undergoing chemotherapy
Easy to understand guide to oral mucositis management from the American Cancer Society:
Guidelines in Spanish
Link to guidelines in other languages (French, Portuguese, Turkish, Italian, etc.).
Mucositis can develop anywhere within the oral cavity (mouth), and throughout the gastrointestinal tract (esophagus, intestines) of patients undergoing chemotherapy and site specific radiation. Oral mucositis can start as soreness, burning, and stinging, progressing to ulceration, pain, and the inability to eat or drink.
Mucositis can manifest as diarrhea, rectal bleeding, as well as ulcers.
Be vigilant about your oral health when receiving chemotherapy, and alert your oncologist or oncology nurse if you experience any change in your mouth/lips, bowel movements, eating, etc.
More biliary drain, PTC tube, biliary stent instructions from various facilities.
University of Mississippi
University of Michigan
There is a lot of literature out there on the effects of chronic low level inflammation. Take for example hepatitis B and C. These are viruses that cause inflammatory changes to the liver. “itis” meaning “inflammation”. Individuals with chronic hepatitis are at an increased risk for the development of primary HCC (Hepatocellular carcinoma). Most individuals receive routine CT scans of the liver to monitor for changes.
If you do a search on chronic low level inflammation on PubMed, Medscape, NIH, or NCI, you should be able to find reliable research on this topic. For example, here is a new publication I found, although I was unable to obtain full access. This link is for the abstract.
Although I have not run across research that directly states “CCA is caused by inflammation”, perhaps it plays a role in the development of this cancer. The current research points to a “multifactorial process”….there is no one specific cause for the development of CCA.
Here is a link to a very good publication from 2014 written by physicians who are well known to the cholangiocarcinoma community, Dr. Bridgewater, Dr. Pawlik, Dr. Gores, etc. Although the article focuses on intrahepatic CCA, they do discuss all CCA. If you read the article, look specifically at the section “Risk factors for iCCA”.
I hope this helps,
THIS INFORMATION IS NOT MEANT TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. PLEASE CONSULT YOUR PHYSICIAN IF YOU HAVE ANY QUESTIONS OR CONCERNS.