De Novo Stage IV

denny123 : what I love about your posts is that it's fabulous that you are here 23 years later, your posts are realistic about the reality of years of treatments.

It is something I am finding difficult to get across to my family they think because I look well and I am stable it's life as normal, it's nothing to do with the psychological aspect it's to do with the physical elements such as side effects.

Very few side effect-free cancer treatments.

@sunnidays Thanks. My family and friends know what I have been going through for almost a third of my life. So I am lucky. I have old-lady aches and pains and always need a hand-rail with steps. But most other women my age without cancer need the same thing. I hope that you are able to find some understanding with your family and friends.

@kbl That sure would make things a lot easier. I pray that you are doing well.

@bsandra My surgeon doesn't think that he will be able to remove my port since it has been in so long. But it would probably solve the bacteria problem.

I have been constantly checking for my bacteria culture results online, but nothing is showing up. The nurse said the bacteria would be allowed to grow for 24-48 hours. But has been long past that time. Perhaps the lab techs don't work on the weekend, or maybe they won't let me see the results until my doctor sees them first.

@denny123 I hope we can treat you with antibiotics; it's true that if your catheter has been there for so long it will be difficult to remove and I understand the surgeon's opinion. Thinking of you so we can find a good solution for you.

Finally can post and have had a hard time getting into here on my cell

I came to the ER Monday night and they put in a mid line. Surgeon wanted to try to kill the staph bacteria in the port and not have to remove the port. But the heavy duty antibiotic they gave me the worst leg pain that I have ever had in my life. Plus arm and leg tremors. So they removed my port and the mid line. And they put in a picc line. I'm now getting Vincomycin twice a day for 2 hours at a time.

But they can't find a home health agency that can take my case. So I'm still here in the hospital.

Wow, what a struggle this is, @denny123 . My heart goes out to you. It must be a relief that the port is out, in any case.

Denny - What an ordeal! Glad they got the port out though, and that you are at least headed for improvement now. Interesting and disheartening about the home health situation. What Irish suggested above sounds like the old "private duty nursing" that used to come out of nursing exclusive agencies (not all around home health agencies). Do they still have those? I'd never thought about it, but it's a good idea if those private nursing places are still around. Would hardly be a first choice, but there is always the rehab places until you can get home health or do OK on your own. Fingers crossed and wishing you much, much luck- especially in getting at home care.

Dear Denny, so sorry you have to go through so much because of that stupid port. If I remember well, it bothers you for more than a year already, and thanks God that it was finally removed. Hope antibiotics make their thing and you'll recover soon to live another happy 50 years! Chugs, Saulius

Thanks Harrow!

@denny123 I just popped in to check on your port status and was happy to see you are home and doing better. Thanks for posting. Wishing you a speedy recovery from your port issues.

@denny123 My goodness you’ve been through so much dealing with this but I’m so glad to hear your port is out! I hope all goes well with your culture and that the picc line removal won’t be too painful!

Hope everyone else is doing well! I hadn’t been on here in a while but tried to catch up as best I can. Things have still been good over here, preparing for a trip to Mexico with friends on Saturday! It’s the first time I’m leaving the country since being diagnosed so a little anxious but mainly excited I’m feeling good enough to go!

@denny123 I'm happy for you that the Pic Line is removed and I hope the antibiotics have cleaned everything up well.
Enjoy these few days of rest.

Hello all,

for some reason, which I don't know, I didn't see this thread being active. a little update about me: I started Xeloda after IR convinced my MO that it was not safe or beneficial to keep me in Elecestrant anymore. Y90 was a long and painful process with a lengthy recovery. disappointingly, the PET scan after 2/5 months showed new tumors in my liver and the 3 tumors that hadn't been treated with Y90 enlarged quickly. several new nodes were spotted in my chest and a new bone met was found in my neck. I am fatigued most of the time and don’t know if it's related to Xeloda or progression in my liver.

KBL, you are in my thoughts. I hope you’re having quality time in NC, and that your daughter and grandson are able to visit you quite often, sending you big hugs.

Denny, what a rollercoaster of challenges you’ve been through for such a long time. Best of luck with your blood test, which will allow you to safely install a brand new port soon.

Olma, I read your post in another thread. I’m sorry the side effects of the new medication are bothering you. are you able to switch medications? there’s another SERM, lasofoxifene, that has fewer side effects.

Jobbibo, enjoy a well-deserved vacation.

Harrow, how are you doing?

wishing everyone is doing well.