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,