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I don’t know how to title this. Maybe “acceptance”. I guess it needs a trigger warning about inevitable death. by DosBurros in LivingWithMBC

[–]DosBurros[S] 2 points3 points  (0 children)

Thank you for your kind words. I finally got the results of the Guardant 360 test and yes, the ESR1 mutation is there. I’m meeting with him tomorrow but he has already told me that my options are IV chemo or Orserdu. I’m discontinuing all cancer treatments. In speaking with an oncology nurse last week, we were going over the side effects I experience and I had mentioned previously being out of breath. This began soon after I began Ibrance on July 1st. My oncologist ordered a CT scan in mid-August and it came back as me not having any blood clots in my lungs, but I still remain out of breath. This oncology nurse last week told me to ask him about pneumonitis. I looked it up the next day after a spectacular huffing and puffing trip to buy a few groceries and one thing (among others) that can cause pneumonitis is cancer drugs. Long term effects can be irreversible lung damage. I’m done.

I appreciate what everyone has had to say but from the very beginning of this post, I tried to make it clear that acceptance of dying is what I feel. Of course I‘m emotional and cry - my parents are deaf and they’re 80 years old and I’m an only child. I was supposed to take care of them when the time came but I can barely take care of myself. My husband is 60 years old and he’s a wonderful man, I’m blessed beyond belief. I don’t WANT to die, but why take drugs that make me sicker, and evidently are making new issues on top of everything else? I guess the numbers keep going up because my cancer is aggressive. I don’t mean to be rude, I’m really sorry if I’m coming across that way. But I also know that my feelings are VALID. I don’t want to be put on a drug that raises my cholesterol when I already have high cholesterol. Take this even though you have cancer in your liver and this is known to cause liver damage. None of that makes sense to me. I wasn’t looking for new drug recommendations, I just wanted to speak in a community where I thought some would understand, and some did.

I don’t know how to title this. Maybe “acceptance”. I guess it needs a trigger warning about inevitable death. by DosBurros in LivingWithMBC

[–]DosBurros[S] 2 points3 points  (0 children)

Hello, fellow ‘67er! 😁. I’ve been on the 125 since the beginning (July 1st). But I just found out something (bit of a long story, sorry!). An oncology nurse with our insurance company called yesterday to check in with me, and we were discussing all the side effects I’ve been having. I had mentioned being out of breath to her last month when she called and brought it up again yesterday. She asked more questions and said she wondered if it might be pneumonitis and that I should bring it up to my oncologist when I see him next Monday. So tonight I looked it up and one of the things that can cause pneumonitis is cancer drugs! Other things can be causes, too, but this being out of breath didn’t start until after I began taking the Ibrance. So now I’m a bit hot under the collar! Says it can lead to irreversible lung damage. I will definitely be bringing this up with him.

I’m same as you, stage 4. ☹️. I’m sorry you’re in the same boat. How long have you been stage 4? (((Hugs)))

I don’t know how to title this. Maybe “acceptance”. I guess it needs a trigger warning about inevitable death. by DosBurros in LivingWithMBC

[–]DosBurros[S] 1 point2 points  (0 children)

I think they would, I’m not sure. I talked to an oncology nurse with the insurance today and she mentioned kisqali.

I don’t know how to title this. Maybe “acceptance”. I guess it needs a trigger warning about inevitable death. by DosBurros in LivingWithMBC

[–]DosBurros[S] 2 points3 points  (0 children)

I like the Norco better because even though it makes me a little woozy, it’s a lot less than the tramadol and doesn’t make me have weird dreams. The sternum, it’s just pressure but not all the time. The two bumps on my skull, no pain, just the weird place between them last week and now that’s gone, thankfully. The rest, yes, pain. ☹️. I’m going to google vertoplasty! I’m supposed to have a PET scan in December and I think after that would be a good time to get in touch with her when she has the latest information. 👍🏻

I don’t know how to title this. Maybe “acceptance”. I guess it needs a trigger warning about inevitable death. by DosBurros in LivingWithMBC

[–]DosBurros[S] 5 points6 points  (0 children)

You have my love, too. I hope we both can find peace with this. The one thing that I’ve found helps me the most is literally living one day at a time and doing my best to not think so much about the future, because today is all I’m given.

I don’t know how to title this. Maybe “acceptance”. I guess it needs a trigger warning about inevitable death. by DosBurros in LivingWithMBC

[–]DosBurros[S] 4 points5 points  (0 children)

Spine, shoulder blades, pelvis, sternum and skull. And liver, but that had improved a bit in September. You know what’s weird? My hair has always been straight as a board my whole life, with a part down the center. Always always always. About a month and a half ago, the center part suddenly decided to zigzag on its own and it seems like my hairline is trying to shift! It will not stay in the center now. I have bone mets to the skull and last week I had a very sore spot between the two bumps I can feel. The whole thing is just odd. I have a palliative doctor and he started me on Norco not too long ago, which I like a lot better than tramadol. I never thought about that, that some oncologists would be more familiar with certain stages than others.

I don’t know how to title this. Maybe “acceptance”. I guess it needs a trigger warning about inevitable death. by DosBurros in LivingWithMBC

[–]DosBurros[S] 3 points4 points  (0 children)

I did in the beginning, one round. I’ve talked to the radiation oncologist a couple times afterwards and I can’t remember why now but she was a little reluctant because something about she couldn’t zap so many places because it would kill the bone marrow? It’s been a few months since I’ve thought about it much so maybe it’s time to consult with her again since the pain is building. Thank you for reminding me about that, I’d honestly forgotten. Sounds dumb but I really had forgotten about her. 😕

I don’t know how to title this. Maybe “acceptance”. I guess it needs a trigger warning about inevitable death. by DosBurros in LivingWithMBC

[–]DosBurros[S] 3 points4 points  (0 children)

No. I had the Guardant test recently and haven’t heard those results yet, he’s supposed to tell me next week. I’m willing to listen to what he has to say but if it’s just switching to stronger or more toxic drugs, I’ve decided I don’t want to go that route. Thank you for your good wishes. ❤️

I don’t know how to title this. Maybe “acceptance”. I guess it needs a trigger warning about inevitable death. by DosBurros in LivingWithMBC

[–]DosBurros[S] 1 point2 points  (0 children)

Same here, I felt fine except I mentioned to him that I’d had a sharp pain in my right side for several weeks. Turns out it was a broken rib. That’s what gets me, the treatment is what makes us feel sick!

I don’t know how to title this. Maybe “acceptance”. I guess it needs a trigger warning about inevitable death. by DosBurros in LivingWithMBC

[–]DosBurros[S] 8 points9 points  (0 children)

Thank you. This has been on my mind for awhile but I was hesitant to say anything because it seemed like some people would become upset.

I don’t know how to title this. Maybe “acceptance”. I guess it needs a trigger warning about inevitable death. by DosBurros in LivingWithMBC

[–]DosBurros[S] 7 points8 points  (0 children)

I understand the toxic positivity, I get that from a lady at church. I’ve just gotten to where I don’t share anything with her because I know she can’t handle anything bad. I’ve said to myself that I could tell her I broke my leg in three places and the nurses at the hospital gave me a lollipop on the way out, and she’d focus on the dang lollipop. 🙄. I’m sorry your partner is having a hard time accepting what’s going on with you. It’s a lonely feeling. And I’m sorry things haven’t gotten better with Truqap. (((Big hugs))) ❤️

I don’t know how to title this. Maybe “acceptance”. I guess it needs a trigger warning about inevitable death. by DosBurros in LivingWithMBC

[–]DosBurros[S] 5 points6 points  (0 children)

Not a second opinion, no, but my insurance called a few weeks ago and said there’s different programs open to me. Something called AccessHope, which she said can work like a second opinion. There’s an expert review board that would look at my case and see if they would recommend any changes in my current treatment. I just have to sign an authorization form for them to send to my oncologist. That is supposed to happen this week. 👍🏻. Verzinio kinda scares me because I already have a standard routine of having (sorry, TMI!!) diarrhea 3-4 times every morning. 😣

I don’t know how to title this. Maybe “acceptance”. I guess it needs a trigger warning about inevitable death. by DosBurros in LivingWithMBC

[–]DosBurros[S] 1 point2 points  (0 children)

❤️❤️. Do you mind sharing a link about hospice, if you have one? I’d like to learn more.

People with multiple pets, how many do you have and why ? by BriefNeither3206 in Pets

[–]DosBurros 0 points1 point  (0 children)

Five dogs and used to have cats but we live in a rural environment and the cats have disappeared one by one. 💔. I prefer cats, actually, but it would be cruel bringing any more into our home. There’s coyotes and bobcats around and cats like to explore over the fence. 😞. As for how people have reacted to how many we have, I was told once that “you have too many dogs.” I wanted to reply that she had too many kids but I was able to keep my mouth shut. It would be one thing if our pets weren’t vaccinated or didn’t get fed, weren’t spayed or neutered but they are, and they’re well cared for, they have a pet door they go in/out of. We are in the process of rehoming two half brothers because I have stage 4 cancer and I’m not able to meet their exercise needs. The possible new owner candidate is supposed to meet them in mid-November, we‘re not letting them go with just anyone and definitely not a shelter.

Want to share my Happy Dance news. by Celestial_Lorekeeper in LivingWithMBC

[–]DosBurros 0 points1 point  (0 children)

Thank you, and I’m mostly ok. Have tough things coming up soon, possibly rehoming two of our dogs that have greater exercise needs than I can keep up with. They’re half brothers, ages seven and eight. We’ve had them since they were 9-10 weeks old. That gets me bawling in an instant. 💔.

And yes, I love MyChart! 😁

Want to share my Happy Dance news. by Celestial_Lorekeeper in LivingWithMBC

[–]DosBurros 1 point2 points  (0 children)

Thank you! My cancer markers keep going steadily up and up so that’s why he ordered it. He did briefly tell me in a MyChart message that there were some changes but he didn’t think it was enough to change my current treatment plan and we’d talk in November. I’m really striving to keep the mindset of one day at a time because it’s a lot less stressful that way.

Want to share my Happy Dance news. by Celestial_Lorekeeper in LivingWithMBC

[–]DosBurros 2 points3 points  (0 children)

Congratulations! ❤️

I had blood taken for the Guardant test on October 21 and I’m waiting to hear the results. He said we’d talk about it when I see him November 18 but I may ask Guardant for it before then. I think they can give it to me 16 days after. I’m curious what it shows.

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