De Novo Stage IV
Comments
-
@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.
0 -
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?
0 -
@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.
0 -
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.
0 -
@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.
0 -
@denny123 I hope the saline drip continues to work for your port. Your mention that your other side has been sore for 23 years brought me comfort that there are others like me. It’s been almost 5 years since my BMX and my chest area is still painful to touch, especially my sternum. Sorry that we’re both in that group of women who have painful and sensitive chests many years after surgery.
0 -
I saw my PA on Friday since my Onc was out. And she wants me to get my 23-year-old chest port removed and that is what I have been pushing for. Since my SE's have been getting worse, she said that means that the bacteria is growing.
But my left side had rads, and is always sore to the touch. So I hope that the surgeon can find a work-around.
The good news is that I am still NED, which has now been for 7 years while on Herceptin and Xeloda.
2 -
@denny123 : It seems to me that it will be a good thing to remove this catheter that is causing you so much trouble.
There will certainly be other solutions for finding a new venous access.
Fingers crossed for you and that it continues like this with Herceptin and Xeloda.0 -
I knew someone who insisted that they put the port in her arm. They did and it was fine
1 -
@soldanella It isn't a catheter, but a chest port.
I don't have any other options since I have bilateral lymphedema. But after I get a new port, my onc wants me to get my first infusion in my hand. I do use my hand for blood draws and CT contrast. That is taking a chance, but has been okay so far.
My lymphedema isn't evident since I got PT right away, but it always lurks.
1 -
@denny123 Myself, I’m doing okay. My heart, not so much. We had to euthanize our dog yesterday. She was a doxie, and she had a disc disease develop and became paralyzed overnight. We made that very hard decision to get her out of pain and misery. The guilt is real. Now I worry about my husband because he will truly be alone when I’m gone. So far I’m having some more nausea and fatigue, but I’m keeping the weight on, so that’s good.
I don’t feel bad for myself because I’ve chosen hospice. Animals don’t have that choice. I was really worried the stress of her being in pain was going to push me to slide downhill. I’m not sure that would have happened, but I couldn’t bear the thought of my husband having to deal with a really sick dog and wife.
It’s going to be rough around here for a while. She was a real Daddy’s girl.Thank you for asking.
2 -
Oh Kbl - So, so sorry to hear about your little dog, Abbey. I had just assumed that after your trip to the vet she would have some kind of time left with you and your husband. My condolences to you both. Losing a pet has got to be one of the hardest things ever. Wishing you peace.
0 -
@kbl The pain of losing a companion like Abbey can make it hard to breathe; it’s so ever-present in the beginning. May you find some comfort in your happy memories of the time you had together. ((Hugs))
0 -
@threetree After we got home from the vet, she became totally paralyzed with her back legs. She hadn’t gone pee since 7:00 in the morning and had drank a ton of water. I watched YouTube videos on how to express her bladder because she couldn’t do it in her own. I could not get it. Both my husband and I tried. I was getting so stressed, and the thought of having to confine her 24 hours a day for possibly two months or longer crushed my soul, and I was having great anxiety. We made the decision together to let her go. So freaking hard, but I know it was the right decision. She was always doing something with my husband, and she would have not been able to do that for a very long time.
@cyathea Thank you. So true. I’ve had seven dogs in my 40-year marriage. None were at all easy. Two things are different this time. Abbey was only a little over six, and all the other times, I still had a dog at home to take care of. Abbey was our final dog.
4 -
@kbl : I read you on the thread "A place to talk about death ..." and you are very inspiring and have helped me make certain decisions for the future when the treatments no longer work.
I just wanted to say that I'm sorry for the loss of Abbey. I don't have a dog but I often watch my neighbor's dog and I know how much good these "little balls of love" do us.
Take care of yourself0 -
@denny123 I’m glad they’re removing your port especially because it’s something you’ve been pushing for! I hope they’re able to find a workaround like you said, keep us posted!
@kbl I’m so so sorry to hear about your dog. They’re truly family and it’s always so hard to lose them. Sending love your way! ♥️
0 -
@soldanella Thank you so much for your kind words and caring. I’ve always hoped I can help those who come behind me with this dreaded disease. 💕 Thank you, again.
1 -
Hugs to you kbl, you will be in my prayers also. thank you for all your contributions to this forum, especially this thread.
❤️ ☮️
1
