Mom had her follow up visit with her oncology group this week. She asked for the port to be taken out and they said not until she was restaged. What is that and when is it done?

Her throat and mouth are still in rough shape so they would not do any testing/scoping. She is anemic so will be getting some shots for the next month or so to help her body's production of red cells.

The doctors also are going to test her for an auto immune disorder (ie Lupus). They felt her reaction to both the IMRT and chemo was so severe and rare that there may be an underlying condition. Anyone ever hear of something like this?
Tami

Tami --

Reading the forum over the past few months there seems to have been a subset of patients who had very severe reactions ot their treatment, that is, beyond the usual expected (though admittedly also very unpleasant) side-effects. This may be due to some underlying external cause or it may be that they were especially sensitive to the chemotheraputic agent. Many of them received cisplatin which is known to cause a fairly serious suite of toxic effects, but usually tolerated with appropriate therapy (e.g. newer anti-nausea meds). At Hopkins we met two people with serious (unexpected) effects thought due to the chemo, one was hospitalized for a few days in fact, but again there may have been something else going on. It probably is not a bad idea to have such things as lupus ruled out in your mom's case.

Gail

Tami,

I'm going to take a guess on the staging, they probably want to do all the follow-up tests to verify the success of your moms treatment plan, It sounds like, if all is well, she is finished. So, maybe they re-stage her for her present status. You will not want the PEG out if there will be additional treatment. Additionally, if she is too sore for the scope, why take the PEG out? Is she eating yet?

Glenn

I think what she wanted removed was a port that had probably been put in for chemo--not a PEG.

Signed-someone who had both.

FWIW, Tami, my Medical Oncologist was reluctant to let me have my port removed right away too mainly because I was both severely anemic (even after taking procrit!) and neutropenic from the chemo and they wanted to reserve the option of IV antibiotics (much easier with a port) and a blood transfusion (also much easier with a port). If there's a possibility your mom would still need either of those, that's probably why they are wanting to keep it in.

Nelie

My husband had his port removed immediately after treatment ended - only to have to have it put back in two weeks later when he came down with pneumonia (and needed IV atibiotics for a couple of weeks).
Seems like a good idea not to rush to take it out.

Anita

My bad.