Immunotherapy and how do we know if it works plus “chemobrain?”
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November 18, 2018 at 9:43 am #97804bglassModerator
Hi Betti,
It must be so hard to have your father far away at this difficult time. I am sorry he is not feeling well.
Chemo can certainly make a patient feel foggy, but what you are describing seems more severe. There have been a few cases on the discussion board of cholangiocarcinoma patients with advanced disease reported to have symptoms similar to dementia. Possible explanations that would be serious matters for doctors to look into have included high ammonia levels in the blood and a progression toward liver failure. The cause for dementia-like symptoms could possibly also be unrelated to cancer, or as you mention, depression and antidepressants.
It is certainly good news that the cancer seems to have stabilized, and from what you describe, your father has a caring doctor going the extra mile to treat the cancer and preserve your father’s quality of life.
Immunotherapy is very new, so we don’t yet have a lot of patients and caregivers reporting on side effects. If you know the name of the immunotherapy drug, you can internet search it and see if there is more information. I know in a very general sense the side effects for immunotherapy are perceived as milder than with chemo, but patients are carefully monitored to be sure their immune systems don’t go into overdrive.
Sending prayers your way that your father is feeling better, and is helped by the immunotherapy. Please take care of yourself during this difficult time.
Regards, Mary
November 18, 2018 at 7:28 am #97803vasilikisimpson@yahoo.comSpectatorGood morning all,
I needed to write once again, it has been a while since my intro. My father was diagnosed with cholangiocarcinoma in late June of this year. Cancer was advanced stage, non operable. We started chemotherapy with the hope of attacking the disease and for a better quality of life. The chemotherapy virtually destroyed my father, body and mind. Weight loss, loss of appetite, loss of dignity, loss of cognition…so we stopped. The major shock for me was that my father has fallen into such deep depression, according to our psychiatrist, that he has created a world where he retrieves, could be what is known as “chemobrain”? Could it be from the incredible highs and lows with his blood sugar level, dad was hospitalized twice due to low blood sugar counts and high blood sugar counts, extreme numbers. He was frightened out of his mind one of the times we took him to the hospital with low blood sugar. My father had a beautiful mind, an intelligent man, an attorney working until a few months ago. A very optimistic fellow, always with a smile on his face, never hurt a fly. He now has some lucid moments but very few. He recognizes all of us and at times he surprises us with brilliant comments. He cannot walk unaided anymore, he’s too weak. My dad lives overseas, in Greece, although he’s an American. Medicine works quite differently there. His oncologist loves my father and he’s doing everything in his power to assist. Even though the chemotherapy was successful in partially treating the cancer, it has literally exhausted my dad. Now the cancer is primarily in the peritoneal area but the good news is that he doesn’t need fluid draining (ascetic) from his tummy as often as he did before, he needed weekly a couple of times. He’s not in pain due to the disease at this point. He has had a few unfortunate accidents that involved falling, but no breaks, left him with lots of pain though, especially on his back and the bed sores are starting to take their toll. We have a nurse at home taking care of my dad along with my mom and his other doctors that visit at home, an internist making sure his blood glucose is normal and all other matters and his psychiatrist who is now prescribing meds in order to keep dad calm, he has hallucinations most of the day, so he needs to sleep and rest. No antidepressants because of the short/unknown prognosis. The latest is that dad’s oncologist was able to give him immunotherapy. It’s still in the trial stages but he got him approved for it and he started about 10 days ago. One difference from before, he’s eating a bit more, although he cannot chew. The oncologist told us that the difference or effect, if any, from this new therapy will be evident to us, to the patient. I would love to have some more information on possible changes due to immunotherapy from anyone that has undergone this type of treatment.
I thank all of you that took the time to read through this. This is a reality I’m facing and trying to hold on to him, it just doesn’t seem real to me at times because it’s progress is so quick and devastating it doesn’t allow me to “believe” it, I just live it. Thanks again. Wishing you all a great Sunday.
Betti
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