taylorjm
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Thank you Marion for the information. I’m learning more from here then the doctors! We were never told that intrahepatic was not qualified for transplant. And I believe the tumor is about 7cm, but not positive. If they would have just told us that, we would have been fine, but instead all we hear is “no, she can’t have a transplant”…..um….why??? Yes, actually want to know why… it’s like pulling teeth to get information from doctors!
So do you know if intrahepatic is able to receive a part from a living donor?
The wife is going to talk to her mom about signing up for medical mj tomorrow. She told me I should be the caregiver so I can go buy the oil for her! Great….now I’m going to be a dealer?? I don’t hear any negative drawbacks to taking the oil, except for cost. And it supposedly really helps you sleep. So I’m not seeing a downside, and if it helps, great, if not, she gets an expensive sleep remedy.
Thanks everyone. They had a consult with a liver surgeon at University of Chicago. He didn’t feel it was operable at this time and mentioned some more targeted possibilities for chemo or radiation. He didn’t explain why surgery isn’t an option, and said transplant isn’t an option either. Not sure why since everything is contained in the liver. He’s taking her case to the tumor board there tomorrow, and wants her to follow up with the liver tumor clinic to figure out the best plan of attack. They weren’t real impressed with the dr, but he was rushed and they expect him to spend hours with them answering every question. Me, I understand they have a job, and they can’t do that.
Wednesday, they have an appt with university of Michigan which is about 90 minutes away. She is meeting with 3 different doctors that day. I believe it’s a oncology surgeon, medical oncologist and radiation oncologist. So hopefully they will get all their questions answered. I would just like them to be able to do some more targeted therapies instead of filling the entire body with chemicals that wipe out everything. We are also researching more on the rick simpson oil, since medical marijuana is legal in Michigan. My wife has been researching medical mj for a long time prior to this illness, it’s just a matter of if she can convince her mother to do it. I’m just starting reading about it and it seems that a good supply to help clean things out would be 60g and I think that lasts 60 or 90 days? I’m not sure. Then a maintenance dose. The initial dose would probably be about $2800 then about $80 a month for the maintenance dose. But I’m just starting to read about it.
Thank you! I’ll keep you posted what happens. Yes, the oncologist they saw didn’t seem very familiar with this type of cancer at all. He didn’t discuss what type of chemo yet either. Also, didn’t discuss what stage she is at, prognosis, or anything like that. He just said he’s very concerned with making sure the quality of life is there, and in this instance, he thinks chemo would be beneficial. When it was brought up they were going to University of Michigan, he said that would be a good idea because maybe their surgeons would know more about this and be able to help because he isn’t comfortable operating on her right now. Um, if you aren’t comfortable with this case, then why didn’t you suggest going somewhere else? Why was his first thought “we’ll use chemo and see if it shrinks the tumor down”. They asked if he had any other patients in a similar situation that they could pass their name to and see if the person would want to call and talk about their experiences. He said he doesn’t have anyone in her situation. So, is that because it’s rare? Because they went somewhere else? Or because they died? The MIL wanted to just get it started right then and there, but my wife convinced them to look for a second opinion, which is what lead to my post about Mayo. But if Mayo doesn’t think there’s anything else that can be done, why would university of Michigan bother to setup the appointment? Same for University of Chicago, if there’s nothing that can be done after looking at the records, why would they bother having her come in? Such a new experience, but being rejected by Mayo is really bringing the MIL down. We told her, there’s a long list of other hospitals, and we’ll try some more before just giving up because Mayo said so.
