Finally

Lisa Rose said:

Goodmorning Andreae ,

It I ever get to the point where I need a second
opinion I'II have to come to you . Looks like
you have all the ground work done. Good Job Andreae ....

I had a a porto-cath and if I ever have to do it again I'll have another . It will make treatment 100% easier on you . No looking for veins or worse yet when your almost finished your treatment the vein colllapses and having to start all over again. I DON'T THINK SO ....

As for the long term care Stacy could answer those questions , as I had mine removed after treatment was complete .

Forget The Weepy Dr,
Lisa

I have had one for about a year. It is the greatest thing sliced bread. The only thing you have to do is get it flushed once a month. of course you will have to have minor surgery to install it. There is no restriction your activities.
Walter

Andreae-

I have had my port since June '02 and love it. Despite the nurses telling me that usually they are put in under sedation, I had a cheerful interventional radiologist who didn't mind doing it under local anesthetic. I went right back to work. One thing, I am pretty thin, and he told me if they run the catheter over your collarbone, if you are thin, it can be uncomfortable. If you are heavier, then they do run it over your collerbone without problems. Since I am thin, you can see mine under the skin but it is no big deal. The one concern is if they get infected. Oncology nurses are trained to do a very careful cleaning of the skin over it. Other nurses may not have so much experience with them, and I always watch to make sure they are careful with the care.

When they give contrast for a CT scan they still will want to put in another IV catheter, because many of the ports are not designed to tolerate the rapid injection of contrast necessary to visualize the liver well.

As for doctors- remember they don't know you well. People come to them with all sorts of ranges of emotions, and sometimes are too afraid to talk about their fears. Oncologists do have to address such issues. There are people who are depressed enough that they need antidepressants. Others lack the tenacity to keep fighting, even if they have a very minor setback, and need other support. I am a pretty upbeat and matter of fact person. I think it took my oncologist a while to realize that it was not a "front", but really how I am. I developed a really good relationship with him once he knew me better.

As for being treated as though you are unknowledgable- once again they don't know you well yet. A little gentle ribbing about how they are treating you sometimes lightens the mood, as well as making them realize that you do have a clue. There really are adults who are incredibly unknowledgable about their body, the generalities about treatment etc., and don't want to know more. I met a person on a clinical trial for metastatic colon cancer who could not tell me the names of any of the previous drugs she had been on for the last year! On the other hand I have met people, like those here, who have become incredibly knowledgable about every detail of their disease and treatment.

As for the sadness, I think it is natural for doctors when they encounter people with a disease as tough as what we have, and we are younger than they are. It does not necessarily mean that they are ready to give up on us, however. I think being cheerful, and occasional humorous, kept them from staying in that mode with me.

I have had 10 doses of Oxaliplatin/Xeloda since June. It has been quite tolerable. I am a bit tired the first 5 days. I get irritation of my hands and feet on days 4 and 5 post Xeloda, which got much better when my onc reduced my dose.

I have the common oxaliplatin cold induced neuropathy which is annoying the first 4-5 days. If my hands get really cold, they tingle so badly that I can have trouble picking up small objects. Oven mitts come in handy when taking stuff out of the freezer. I just bought super duper ski gloves for this winter. Drinking/eating cold stuff at that time is like eating Pop Rocks. The signs that I get from cold exposure go away as soon as hands, mouth warm up- just annoying while it is happening.

The big concern about oxaliplatin is a more long lasting neuropathy that might limit their ability to give it, even if it is working on the tumor. My oncologist is trying giving me infusions of calcium/magnesium before and after my oxaliplatin, since there have been some preliminary reports in Europe that this may help reduce the incidence of neuropathy. Although it is not standard treatment, I lobbied for it, because oxaliplatin is the only thing that is working for me.

I used to get queasy (although I almost never have vomited) 2-3 days after oxaliplatin. There are a variety of antiemetics available, and I tried a variety of them before hitting on the right combination to eliminate even that queasy sensation without making me too tired.

Best wishes,

Kris