Thank you for your post, Bob. I think it's too late for Mom to try this though I sure wish she could have had the opportunity as this combination has worked so well for you! I hope you have continued success with your treatments and wish you all the best in your fight! Thank you very much for sharing this with me.
Joyce, I think of you and your mother often! I am so confused right now, I'm not sure I know what to think anymore.
The 2nd cycle of 48-hour infusion of 5FU really took my mother down. That was Tuesday, Feb 6th. Since then, the decline in my mother's health has been so severe that like Joyce (jmoneypenny), I feel the chemo actually made her cancer worse, not better. Her fluid intake was low and I called the doctor that was on call Sunday to see if there was anything we could do since my mother kept saying, "I think I need to go to the hospital." He said there was nothing a hospital could do that we couldn't do at home ourselves and the only thing he suggested was for her to come to the office in the morning and they would hydrate her--"maybe that will provide some comfort." My mother was not in traveling shape, so we had nursing hydrate her from the 12th to the 14th but it did not help much and even the nurse made the comment "hydration will not help you feel better." I guess that's subjective, but it appears it has only bloated her.
On Feb 15th, Mom told Dad that she no longer wanted to take chemo and to cancel the next appointment. My father had a lot of hope for chemo and was disappointed, but honored her decision. I am glad she stopped the chemo as I know in my heart that it was making her worse. When Dad called the oncologist he said that "in my experience with this stage of cholangiocarcinoma, chemo does not help much anyway." He told us to call Hospice. He said that based on her recent LFTs (liver function tests), she has about 2 weeks to live and the original prognosis of 6 months is not the case now.
Hospice came on Saturday to discuss what they have to offer. Hospice had the impression that Mom has cancer in the lungs. This was "new news to us." I called the oncologist's office and the doctor said that their records indicated only cancer in the liver and possible T8-9 but not anywhere else. He said maybe hospice nurse heard crackling or sounds in her lungs that made them suspect she had cancer in her lungs, but no one has listened to her lungs, yet. The hospice social worker is the only person who has visited and her records reported lung cancer as well as the liver, which she said she got from the oncologist's office "or you told us that." I told her I had no reason to tell her my mother had lung cancer because it has never been mentioned to us! I can't believe PEOPLE! How frustrating it is that all these laws concerning access to your medical records and making sure you list the people you want to allow access to get them for the protection of the patient and yet, I've requested and my father has requested Mom's medical documents at least 4 times between both of us and we still don't have them! It is as if "they" hold a secret and are guarding them at Fort Knox!! I guess it is not important enough to them in the whole scheme of things as she's dying.
I needed to know that we have done all we can for her, so I asked the oncologist if she could have had a liver transplant and he said it would have to be done today and even if she made it through the surgery, the microscopic cells left behind would most likely develop in the new liver and since she most likely has microscopic cells elsewhere, a whole new "ball of wax" would develop, so the answer was "no." The oncologist said that her heart is fine and that most likely she will develop pneumonia and die in her sleep very peacefully. He asked if she was jaundiced, yet and I told him she is not. He seemed very surprised, but said she would probably have another 2 weeks from the 2 weeks he told my dad last week. This is a far cry from the 7-6 months he gave her at consultation in January.
Mom is so bloated and we need to find a way to get the fluid off of her if we can at all. My father does not want her going to a hospital. He is not sure about the pills and I told him they most likely will offer Lasix. I think if she could get some of the fluid off, she might be able to sit up more and walk again, but I just don't know. She is still very strong, but the bloating is terrible in her belly. It is all focused there and the pain, which had subsided 6 days ago is now back, but I think it might be more from sleeping 97% of the time in bed. She is not eating solid food at all and we are lucky if she drinks 1 Boost a day. I guess like you said, Joyce, we think of wasting away as a gradual step-by-step, but I guess it is very unique for each person and there is no way of really knowing. This has moved so fast, it is blowing us away mentally, emotionally, and physically! I mean it was only a week and a half ago I was taking dinners to my folks and Mom was eating a good portion of it. Now, we are down to 1 boost a day! She can only get up with help now and it's a struggle--it's heartbreaking!
Can I just say that I am SOOOOO PROUD OF MY MOTHER! Through all of this she has maintained faith, hope, love, and a wonderful sense of humor even with her dentures out! She was always so self-conscious about keeping her teeth in but the last cycle of chemo left sores in her mouth and she has had to remove the uppers for the last week. My heart aches so much for her. I am torn to shreds inside. I keep telling my family not to lose hope until all hope is gone. Mom asks me every so often "am I going to die?" I say, "I sure hope not, Mom!" Some moments she talks as if she is knows she is dying and other moments she talks of the future and "when I get better, I'm going to _____."
What is the point of typing any of this? I guess I'm saying, if your loved one has a 13 cm mass in their liver and it's not resectable, enjoy the time you have with them and consider that there might be a chance that chemo can actually make them worse as I think it did in my mother's case and if you read jmoneypenny's reports, she can attest to that as well with a similar situation. Research as much as you are able so you know you've done all you can but be kind to yourself knowing that even medical science and the doctors don't have answers for this disease.
Also, if you keep getting a "stomach virus" check it out! If you keep putting a heating pad on your side like my mother was doing, thinking she bumped into a chair when actually it was a "knot" of cancer and not a swollen bump as she thought--it's time to go to the doctor. I'm sure she was already too far for help even in November when she noticed the lump, but if you keep getting stomach pain, diarrhea or just "don't feel right," please don't take it lightly for yourself or someone else. I tried telling her to go to the doctor since early summer when I suspected something might be wrong because her memory was off, but I couldn't encourage or "threaten" her enough to go and Dad was not pushing the issue. Unfortunately, it was not taken serious. "I'm fine, and it will go away," she said.
The oncologist said this cancer is "not rare" and that he has "treated several people with it." If it's not so rare then why does Medicare say it is so rare they don't pay for some studies? All I know is that my mother was officially diagnosed in January and here it is February with maybe days or at most a couple weeks? I can't believe we've gone from 6 months to a matter of 2 weeks! The only "common sense" explanation from the prognosis of "6-7 months and hopefully we can get you into next year" is that the prognosis was made before the chemo. Now, after 2 rounds of chemo we are down to 2 weeks!
It appears, unless a miracle comes from above quick, the world will lose another wonderful, self-sacrificing, giving soul, genuine in kindness and deed, and most helpful to those in need without expectations in return. I have been truly blessed to have been given this woman to call my mother and so proud of her. She will be missed more than words can express. As bad as things look, it doesn't mean I'm not still praying and looking for a miracle...
I hope there is a cure for this terrible disease. Honestly, I think they need a better blood test, spit test, urine test, "whatever it takes" test as a way of diagnosing it early before we can even hope for a cure that will help the people who have this.
God bless all of you who are living through this and those of you who have loved ones with it. It's an unpaved road to say the least and I feel love and admiration for each of you who are going through this battle.
For family and friends having a hard time visiting or seeing someone with this cancer, tell them what is on your heart! Odds are they are handling the situation better than you are and they will help you through it! I know you look at them and words escape you but your heart is flowing with love for this person. All I can say is don't hold back, keep it positive and say how you feel or share what you remember--a memory, a song, anything you shared together is shared again--it does help both of you get through it and laugh--laugh as much as you can together. I am surprised at how much laughter Mom, Dad and I have had in this ordeal and I'm so glad her sense of humor is intact more than anything!
To be able to have the chance to show how much I love her and say "I'll see ya later, Mom" is a blessing I am truly grateful to have. But for now, I'm off to see my dear mother to do just that--keeping the love alive another day!