Forum Replies Created
positivity….it’s really important to know why your Mom is fearful of eating. Has she ever vomited due to overeating and if so, how much food had she consumed? Abdominal pain – is it caused by a certain type of food (carb’s can be difficult to digest as is meat). Does she have regular bowel movements?
Have you discussed with her physician the use of stool softeners?
Inactivity – is your Mom moving around and especially following her meal intake?
Years ago I attended a seminar on sluggish bowels treatments. In severe cases patients were advised eating meals while standing up.
The more you are able to identify the more answers will come your way.
deadlift….you have a great oncologist on your side. Although, my husband tried his best with the intake of fluid, but every three days we had to take him to the hospital for hydration. Ultimately we choose TPN, which in turn satifsfied his nutritional need as well as solved the hydration issues.
MarionJuly 13, 2017 at 2:22 pm in reply to: Hello from Houston, first post, sister with Cholangio #95259
Jjgunny….please accept my most sincere condolences on the passing of your dearest sister. There are no words to help ease you through this most difficult of times, but know that we are here for you, always. Myrna’s legacy is forever embedded in our hearts and on this site.
Hugs and love,
MarionJuly 12, 2017 at 6:47 pm in reply to: Age, Cancer Type May Determine Tumor Mutation Load #95274
You must wonder why at times we simply place a link on the site minus our comments. The problem with many of the publications is that they are protected by copyright, it’s stricly enforced.
positivity…..Appetite loss is common among cancer patients, and can be directly caused by cancer, particularly cancers of the gastrointestinal tract like stomach and pancreatic cancers. Have you considered consulting wih a Dietitian? Also, who is your Mom’s primary care physician, who is in charge of her care? Is she depressed? Are there certain foods she can be enticed with? What happens if she eats foods not on the allowable list due to her underlying disease? Does your Mom have access to a palliative care team? Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
It’s very difficult to regain weight when on a downward spiral and eventually, no matter how hard we try, cachexia (wasting syndrome) may set in. When that happens nothing helps with weight gain, food simply becomes the fuel for cancer growth. http://www.cancercachexia.com/what-is-cancer-cachexia
I don’t have the answer to what is causing your Mom’s lack of apetitite, but have you spoken with her? What does your Mom want? Does she want to continue to fight or is she doing it for you only?
I thinks it’s really important to have these questions answered, because without a common goal neither of you will obtain positive results.
Realize that caregiving is enormouly taxing on the individual not only emotionally but physically as well. Be kind to yourself. We want to have a definite answer to our questions, but the reality is that too many things are not explainable and the answer may be floating around somewhere in the Universe. That’s when our focus shifts to symptom control.
Julie….you just know to make our day!!!!!!!
I googled: “Grief sessions for childen” and many places popped up. Perhaps you can find one near you. As Lainy mentioned, Hospice is another good resource. Also, see if you can make contact with the school counselor, local clergy (if applicable) and the City itself for possible programs.
Hoping for others in same situtation to come forward and help you out.
MarionJuly 11, 2017 at 7:56 pm in reply to: ASCO launches first study with molecular targeted agents #90040
TAPUR Trial Leverages Genomic Testing for Precision MedicineJuly 10, 2017 at 5:30 pm in reply to: Hello from Houston, first post, sister with Cholangio #95253
Jonas….good to hear that all test results came back as normal. I wonder, have they checked her potassium level? Just thinking out loud. It may or may not provide some answers re: Myrna’s occasional state of confusion.
Thinking of you and sending a tidal wave of good wishes your way,
MarionJuly 9, 2017 at 6:50 pm in reply to: Hello from Houston, first post, sister with Cholangio #95236
positivity…..This board was developed for sharing of opinions, glad to see that you bring your point of view to our attention.
My personal experience with this cancer as well as what I have learned as a member of this board for 11 years in additional to my professional function as clinical research/patient navigator and patient advocate has taught me to fully support the wishes of the patient. And, this leads me to the expression of “hope” and what it means to me.
Simply said, having hope is to imagine a positive outcome.
Again, this varies from person to person. As far as I recall, your Mom is not healthy enough to undergo cytotoxic (chemotherapy) treatments and also she is underweight. You choose to focus on building her immune system and the implementation of nutritional changes best suited to her. So, you are doing what you feel is right for her. Makes perfect sense for your Mom.
However, this approach does not fit everyone and I wonder whether you would have a different viewpoint if things were different for your dear Mom. Would you consider chemotherapy if indeed your Mom could tolerate it?
Myrna, wants to fight this cancer in a different way, that is understandable as well.
And, what about the thousands of patients choosing active treatments with the variety of drugs available to us? We have seen some incredible responses to currently applicable treatment. Yes, there are side effects (some people experience it more than others) but most recover and are here to talk about it.
Ultimately, we must remember that due to lack of funding rare cancer suffer from research neglect. Unlike the major cancers (breast, prostate, lung, etc) we simply don’t have enough data to fall back on. Phase III clinical trials are difficult to conduct (too few patients and too many late stage diagnosis), but we need the data of Phase III studies, which proves the advantage of one particular treatment vs the other.
The good news is that the current research is focused on biologic agents such as immune checkpoint inhibitors and molecular drugs, which in turn addresses the molecular underpinnings of tumor growths. Immune checkpoint inhibitors allow T-cells to recognize cancer cells and thereby support the body to fight off these unwanted cancer cells. This is Personalized Medicine.
Hugs and more power to all,
MarionJuly 7, 2017 at 8:21 pm in reply to: Hello from Houston, first post, sister with Cholangio #95243
Jjgunny…it’s so difficult to accept the seriousness of your sister’s current health condition. But, given the fact that they physician administered chemotherpay despite the high bilirubin count (7) when normally it should read 2. only shows how hard he is trying to change things for the better. You must know that all toxins are filtered by the liver and a compromised liver is incable of doing it’s job. Your sister must regain some of her strenghts and feel much better prior to moving on to another regimen.
Hugs and love,
Diane…..venting helps, glad you choose to do so on this site.
I have learned that gastric cancer patients , including CCA patients have a tendency to throw clots. It was discovered by Armand Trousseau, who first describes this finding in the 1860s and he later found the same sign in himself. Trousseau syndrome is an acquired blood clotting disorder that results in migratory thrombophlebitis (inflammation of a vein due to a blood clot). Although not always associated with an internal malignancy, many cases do show an underlying cancer. However; based on the thousands of reports on this site, I estimate (don’t hold me to it)
trombosis affects less than 10% of our patient, hence you never know in advance who will be affected by this syndrome.
Stents are a different story in that we know that at one point they will become infected. On the average plastic stents last for 90 days, but here again some people can go longer whereas others need replacement within 6 weeks or less. In this case it’s best to take the temperature (daily) and to head to the hospital once it reads 101 F. Other signs of an impending infection can be a sudden onset of shaking minus a raised temperature. This shaking is called “rigors”. In any case, a physician must be notfied.
I so much understand your frustration, Diane, because we would love to know in advance what to expect with this cancer, but it’s so darn hard to predict as to who get’s what.
Hang in there Diane, you are handling everything in the best way possible.
SpokaneMom….wow….so happy to hear that your husband is feeling so well and has regained his pre-surgery weight. It just goes to show how each patient can present with different side effects, which in turn demand a different approach. In your husband’s case adding the additional fluids solved the nausea issue, which in turn allowed him to eat more. Wonderful results.
Also, I applaud you for making a decision you feel comfortable with and have a great team of physicians behind you.
MarionJuly 7, 2017 at 5:30 pm in reply to: Hello from Houston, first post, sister with Cholangio #95240
Jjigunni…..a tidal wave of good wishes is heading your way. Perhaps sometime in the future you may want to obtain additional professional opinions, but at this time your sister in in excellent care. It’s best to take it one step at a time and that is what you are doing.
Hugs and love,
Anelko…..the stent will allow for biliary drainage and you are correct, your Dad should feel significantly better.
The next steps are as mentioned by you, pathology result of the collected tissue followed by a consult with an oncologist.
Please keep us informed, we care and we are in this together.