CA 19-9
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Moderator, No treatment since 2011. Numbers that is my question? ONC referred each time a scan or numbers when up and they didn’t feel there was anything they could do. I finally change Dr. although in the same office. I like the new Md. They completely reviewed the fill and said not much left to offer. If I wanted to try anything else they would be open to supporting.Not turning him/her down just after coming to home didn’t feel I was ready or met the need. I have gone through this as I said since 2010 and it’s June original surgery. So I’m at the 4 year mark. I have ready from others that they have had low numbers but lots nets sp. and other metastasis. I have been already told stage 1V and growth. Very surprised and confusedd fearful about findings and don’t want to tell family for fear that the unclear situation is wrong. Sorry to be so vague but it is. I have an appointment with my Gp and will ask her hopefully have more clarity. I also have red that the ca19-9 isn’t an indicator but a number reflecting growth or more metatisis. thanks for reply and guestion I feel less confused and stupid with you also questioning the same as me yes I havve insurance but the co-pays and remaining balances are tough. the doctor who did the ovairan surgery didn’t hold off even with the 50.00 per mo went to collection. it’s tough.
Dear Wisdom, wow, talk about a roller coaster ride. There are some things I am not understanding here and perhaps you can clarify for me. Are you under any treatment now and if so what and if not I am wondering how you are getting such good numbers? I also don’t see where your ONC is that involved as it seems to be between the Hospice and the Nurses. It is usually the ONC that orders Hospice and they are not supposed to turn him down. Just not sure here as the decisions being made are so vague. Do you have insurance as the Scan is really important. I am sorry, perhaps it’s me tonight but I understand what you have gone through I don’t understand why you are being played like a ping pong ball. Perhaps another opinion is in order here as I don’t see what the ONC is doing. The good news is your CA19 going down!
It has been a while since my last post. In March 2010 I was diagnosed and surgery was scheduled for June 2010. The resection was a success all nodes and margins were clear. However they suggested I do a round of Chemo to be safe as an adjunct treatment. So this started in August/september. I had a difficult time couldn’t get a rhythm going due to levels and getting sick. Thus they suggested I stop. By christmas 2010 I was referred to hospice. However hospice didn’t feel I was ready and they would check in on me for future care. In March 2011, a large grapefruit tumor was noted and the team decided not only did I have cholangio but now it was also Ovarian so immediate surgery was set up for the end of March. One more sugery and then the case went to the tumor board between the city I live in and UCSF. The outcome was no other options. Back to hospice who again said not ready and then more chemo suggestions. Didn’t go that direction as I didn’t want to feel sick and go in and out of the hospital while dying. Since then blood work, scans with increased sites and changes, extreme tiredness. Again back to hospice and the not ready yet was returned. Finnaly I decided to live and live I have been doing along with working a full week and moving on in my live. A few more scans with increased results, but no treatment. CA19-19 up, up and suggestion of hospice, not yet they said. So. decision is to live and let it go. Since then my levels have continued to go up until last summer when then began to come down, and down and down, last month the CA19-9 was 30 lower than after the resection. I called my doctor and they indicated that this was good and is a scan scheduled? (very expensive and this has taken a toll on finances to point of possible bankruptcy. I shared with the nurse no scans scheduled and that the last one they thought I was developing a reaction to the agent. Thus no scans scheduled. The nurse told me to continue to do what I’m doing and let them know if I need anything. I’m baffled and don’t understand these findings. Any feed back direction would be appreciated, Also on the exhaustion and food for someone not in treatment. Bless you all your in my thoughts and prayers. Wisdom
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