middlesister1

Gavin- Hugs right back at you!!!

I spent day on train back and forth to DC for a 2-hour meeting. However, we are finally moving forward for Mom. Meeting with surgeon on Friday to see about taking it out and then a PET scheduled for next Tuesday.

Again, Dr Moeslein came through for us and read her scans. Although his impression is that it is a recurrence ( I was hoping he’d say scar tissue) , his read and recommendations give us a path to move forward. He mentioned that he gave a consult from a board member from Gaithersburg too.

He really is amazing- he mentioned the wish that patient would get to him for treatment sooner. We were very fortunate that although Mom was still having positive response to chemo, that we moved forward with the Y-90. He said that often patients are worn out by the time they get to him . I said it would be great if he could go to SLC next Feb to present.

hugs to all,
catherine

Melinda,

That you for the support. Mom waited all weekend, ( we were told ONC would be on this weekend and return call), but no call and no response to my two emails. I’m debating if we should go through moving Mom’s treatment down the street to JHU. The assistant did return the Thurs morning call late Friday afternoon and said her chart included an order to retry the needle biopsy- not the way we want to go. We have an appointment scheduled tomorrow which was to go over biopsy so I guess I will still take the day off work just so we can get the ONC to speak with us. Ideally, the time off would be to take her for a surgical consult or a PET scan ( sorry I am fed up). If the biopsy has a great chance of failure again, why are we waiting and wasting more time? Because of their error (ONC explained the radiologists are only human- they also commented her appendix was unremarkable ( she doesn’t have one)) the mass has doubled in size since Jan. And, I wonder if they do attempt to get the biopsy, would multiple “pokes” be something that causes seeding?

Monday morning and I’m ranting- sorry. Do I have unrealistic expectations that when they couldn’t do the biopsy that the ONC would return our calls the next day rather than make us wait till following week? She already warned us that a PET takes a few weeks to get an appointment for- I think last Thursday we should have been able to call and make that appointment.

Happy Eclipse Day!

Catherine

Good morning,

Thank you both for the replies and trying to help me find information.

Mary- that is great information about the 2 years recurrence. In hindsight (once again) I should have insisted on a CT/PET back in Jan- or at least this time around. The last one was over 18 months ago. The ONC said that if it came back, we would see on the CT and then subsequently would do a PET. I think Dr. M’s recommendation of annual PET is better for CC.

Yup- Mom’s case is unique but we have been very fortunate. To have CC and go treatment free for years is pretty great. However, I am being greedy and hoping this turns out to be nothing. but the CA-19 rose 15 points which although not much, is something she hasn’t had before. Her biggest complaint (although she tries not to mention it) is very bad adhesion/scar tissue. She’s been living with them for decades from a hysterectomy and the aborted resection in 2013 resulted in many more.

We also mailed her scans down to Dr. Moeslein- maybe he will have some insight to offer.

Thank you!
Catherine