Best Of

Oh, CBL, everything you were doing was completely reasonable! I'm impressed you even thought to measure O2 levels, I probably would have thought maybe it was heart problems. With respect to trials, I thought pneumonitis history was most a problem for immunotherapy trials in particular? And anyway with all you are going through right now surely you wouldn't want a trial, we all will be very interested to see what your MO recommends..

@dulcea - Thanks very much for sharing all of this, and I am so glad you found some kind of specialist. Please keep us posted on how things go. It does sound like an uncommon and confusing situation. I also know what you mean about Dr. Google. They say not to do it, not to rely on it, etc., but I do find it very helpful at times, so I am not one who will stop looking on the internet about these things. (My previous oncologist implored me to "stay off the internet!", something I could/would never do. My current oncologist works with me, and we discuss things whenever I mention anything I've read online.) Good luck with your Monday appointment scheduling!

I just wanted to do an update on my liver lesions.

I am dealing with ascites again which absolutely sucks. It's not as bad as last time when I accumulated the fluid quickly and had to be drained. Now it comes and goes. Sometimes I am 6 months pregnant and sometimes I am two months pregnant. Stretchy pants have been in the amazon cart a lot lately. I didn't realize that back in May when I first had it, I also developed an umbilical hernia from the pressure. Last month, I met with a surgeon to determine if it was dangerous and if/what we should do anything about it. He said that repairing the hernia is worse than leaving it due to the scarring that occurs. Either way, having holes in your abdomen and then developing a lot of pressure from the fluid can wreak havoc. Thankfully my hernia is small at this point. I am considering having a permanent drain put in my abdomen instead of just having it drained when needed. I hate feeling like a ticking time belly! I have also cross posted this information on the Enhertu thread as there is not a lot of information here on this topic. And in my case, nor do the doctors offer up any education on this topic besides " it will happen again".

My last scan in August showed that Enhertu had reduced the amount of liver lesions -yay! finally!- but I worry that since the ascites is accumulating again and it's no longer doing its job. I guess I'll find out in November unless something happens before then.

Thank you @rstogether and @tbos805. RO thinks 5 days should be enough for the 2 spots he will be targeting. I’m praying he knows what he’s doing. I’m happy there is a palliative solutions to the bone pain. I sure hope the scientists would focus more on a cure than just creating “treatments” for what they are now calling a “chronic disease”.

@cblaurenceauthor Thank you for your feedback. I'm sorry that this treatment caused you all this inconvenience. Your message is important because I also tend to self-diagnose and miss the mark, or wait and tell myself that it will get better on its own. Last time I thought I had a fever from a new treatment when my oncologist simply told me that I had a bad case of the flu and he was right...so I think it's important to remember that all symptoms, discomforts, and pains deserve to be mentioned to the doctor.
I hope we can quickly find you a new treatment. Thank you again for your message, which is so important for all of us.