De Novo Stage IV

kbl

@jobbibo Happy holidays.

@denny123 Thank you so much. 15 weeks off meds, and I’m very appreciative that things haven’t taken a turn at this point.

I hope your infusions are still going well with not having the blood pressure drops.

Hugs.

denny123

@kbl So glad that you are feeling okay. I had a friend who was on and off hospice 3 times. We are all praying for you. My Herceptin went okay and my BP still goes very low, but not as low as it had been.

But now that we know that my port has a bacteria, I just have saline dripped through the line for the port flush. So I don't get really sick anymore.

I will have a CT on Jan 7, and will see my onc the next week. So we can discuss all of my weird problems.

kbl

@denny123 Thank you so much.

I’m glad it’s not as bad as it was and you know why now. It’s so hard when we don’t know why something is happening. I hope your scan shows stable. Hugs.

Happy New Year!

weninwi

denny123,

Your port has a bacteria?! So your line is infected? This seems serious to me. What bacteria? Are you saying that a saline drip instead of a saline flush is considered an adequate way to manage an infected port? Have your doctors mentioned any other treatment approaches? Have your doctors talked about removing the port?

denny123

@weninwi My port isn't infected. To find out what kind of bacteria it has will take a ton of testing since a broad-spectrum antibiotic is not recommended and won't work.

So far the saline drip through the tubing is working, so we will go with that until it stops working. I am considering getting another port, but it would have to be on the other side which is where I had rads and has been sore to the touch for 23 years.

I will see my onc in 2 weeks to see what he says.

I have figured out to get my blood draws through my hand vein since I have bilateral lymphedema. And that is why I can't get my Herceptin in my arm veins.

There are other patients with long-term ports who have infections, and at this time, the saline drip is what is recommended for me.

The other option might be the Herceptin injection, but when I was first having problems, they didn't want me to get it. So that is also an eventual option.

denny123

@kbl Thanks! My scan is Jan 7 so we will see. I should be able to see the results online before I see my onc on the 15th.

Sending prayers for you always!

weninwi

denny123,

Thanks for your clarifying comments. I found on a Google search that there's a difference between bacterial colonization and infection - a distinction I didn't understand when it comes to ports. I hope the saline drip approach keeps working for you.

kbl

@denny123 Please keep us posted. Thank you for the continued prayers.

denny123

@weninwi I had no idea either! When I was trying to figure out my problem, I kept talking about an infection. But my nurses said that since my port looks fine and draws fine, it is not infected. Then they mentioned a bacteria!

The saline drip worked okay again on Friday, so we will continue to go with it, unless and until I start to have problems again.