MBC Chick with a spot on her liver now!!

[Hotlantaphatz]

When I learned of this recent diagnosis from a CT scan all I could say is “WTF”. Stay tuned.

[Hidden]

Hi Hotlantaphatz -

I'm so sorry about the spot on your liver! And I agree "WTF"...

I'll share a couple of thoughts...

First is, do they know that it's cancer? I've had what I call "nits" that show up in my scans in my liver...and lungs...for many years. Docs keep an eye out, but the nits either don't grow or they actually shrink and go away. So, unless it's confirmed (via PET or biopsy) maybe try to do the impossible, which is not to worry about it?

Also, I looked through your history and you've been in this community for just a few months, not sure if that means you've had MBC or - more importantly - have been on current treatment for just a few months, but let me mention this...

...Some of the treatments we use take *months* to take hold and really start to work. As an example, when I was first dx'd (a long time ago), I started Letrozole in January (2015) then added Ibrance (newly approved at the time) in April. I had one met, T12, for the first several months. Then in November, I suddenly had "widespread bone mets, dozens and dozens of tumors, too many to count". My doc (my angel), in her wisdom, let me *not* change treatment b/c she thought it might just be taking a while (call is 10 or 7 months, depending on if you're looking at the letrzole or the addition of Ibrance). She was right! I remained on that treatment for years, actually improving for the first 2-3 years before progressing *very slowly*.

So my point is, if this is in fact cancer, is it possible that the treatment is still taking hold? The key difference is that my *explosion* of mets were still in the same organ, i.e. bone. I don't know if possibly progressing to a new organ changes the logic here?

Just thought I'd share. But mostly wanted to wish you the best with your diagnostics and treatment!

Best,

Lynn

[Hotlantaphatz in reply to Hidden]

Thanks LynnFish! I have MRI and will know more

[OneLump22]

I'm with Lynn, you're in my prayers Hot 🙏. Keep plugging along.

[Timtam56]

Same as Lynn. I have "spots " on liver and lungs.... But they're not sure if they ARE Cancer. So my oncologist has done nothing about it. Doesn't want to. I don't worry about it, am I crazy for not worrying?

[kearnan in reply to Timtam56]

No. It makes sense to me NOT to stress about things you do not know for sure. What is the point? It does not change anything. I never get nervous or stress about scans. In November 2021, they saw dots on my liver but were not sure it was cancer yet (I think my onco and I both knew it was). Sure enough in Feb. 2022, it was a cancer tumor. She kept me on same treatment and at beg. of June, my scan showed that the metastatic cancer tumor doubled in size. So I am off the treatment which kept me going for almost 3 1/2 years and now am on tamoxifen and affinitor to see if will slow down the growth. Because it increased much quickly than I think my onco expected, not sure if these drugs will slow down the growth or not. But I do not want to waste time worrying about things that I cannot change or control.

[Timtam56 in reply to kearnan]

Oh kearnan. Good luck with it all.

Please keep us/me posted. Thinking of you.

Yes. I believe you are right. What will be will be. And I think when we don't worry it's better for us than worrying. There's enough stuff we CAN DO something about, that we are better off worrying about.

[jersey-jazz]

Usually, I hate it when people use initials because I don't know what they mean right off the bat. I understood yours right away and think that instead of the word itself, I will use wtf. Others will scratch their heads but people like us, won't.

[Hotlantaphatz in reply to jersey-jazz]

Smiling

[Contrarielle]

Good luck for your MRI result 😊

[mariootsi]

I agree! Wtf!

[kearnan]

I was told in Feb. 2022 that it was in my liver. (I rarely get stressed out about scans, it doesn't help so what is the point.) I had another CT scan in June and the tumor doubled in size. (It is already in my lungs and spine.) So NOW, my onco took me off verzenio 2 50 mgs. per day and the falsodex injections which I had been on for a bit under four years. I just started 13 days ago tamoxifen (20 mg.) and afinitor (5 mg.) once per day.

She told me they could possibly shrink the tumor in my liver but from what I am reading from the maker of afinitor (Eramluis??) it does NOT shrink the tumor, it can possibly slow down the cancer bc my CT scan report stated SIGNIFICANTLY INCREASED (YES, bolded and in caps LOL) . So she said from my bloodwork (now she wants me go there twice a month to get bloodwork done) that they can tell if it working or not. We shall see.

[Hotlantaphatz in reply to kearnan]

Be strong kearnan! You are awesome! I appreciate your input

[kearnan in reply to Hotlantaphatz]

Not really. The harder thing is I am single, never married and no children. I was engaged when I was 22. There was a car accident and his injuries were too severe so he passed at age 22. I used to have so many friends and be social, but once I stopped working and people saw that I did not pass away right away as they expected (me also), little by little they fell by the wayside. When you can no longer do things on a moment's notice OR you never know how you are going to feel.

The stress for me is bc I truly do not have any close biological family. I was not raised by parents (long story). I never even realized I had no life insurance bc it always came with the job.

So I got a cheap $7,000 guaranteed life insurance. You have to live two years for it to be paid in full. They ask no medical questions. I figured I do not own nothing, am responsible for no one, but would need to get a basic one so that whoever I chose would NOT have to lay out one penny of their own.

You do not want to think about that day. Well, now that it is in my liver (Iungs, and spine) and it grew larger in the 3 month scan, I realize things are getting tougher.

I do not drive, and nobody lives in Brooklyn anymore. A friend in FL who is married, but they have no children said she would be willing to clear out my apt. I am starting to think that is what she said, but her husband is controlling. I also realized that $7,000 is NOT alot of money.

I spent this 4th of July week calling places and I am going to be a possible body donor. Her and her husband will not be coming to NY until after I pass so I will be alone. I filled out the forms for Columbia Medical in NY and if they decide when I die, that my body is viable, they will pick me up and there will be no charge. After two years, they return the ashes if anybody wants them, if not, they hold a small service for those people.

Certain criteria have to be met. No contagious diseases, no wounds, cannot die from an infection, etc. Must be less than 250 lbs. So although I have done the forms and affidavit, they will not know until I die if my body is viable. If so, my friend in FL can call them and they will take care of getting me whenever I wind up. Now, having doubts about my friend wanting to really do it. So not sure how to proceed.

Plus, these new meds Tamixofen (20 mgs.) and afinitor (5 mg....something like Everolimus) I am having a hard time with. I have no energy at all. I eat nothing more than maybe an apple and two bananas. Everything is getting harder.

I can get an aide by the State but do not want one. I was taking these new meds in the am, but yesterday I could barely move. It was awful so today (since you are supposed to take the same time every day, I changed it to 5:30 pm) thinking maybe I can eat a bit more and get some cleaning done if I take later in day.

Just one of those few times when it is hitting home and being alone all the time is hard. I thought it would be easier if I were alone as things got worse, so that I was not worried about what I would miss, but I was wrong and too late to go back. One day at a time, I guess but I am getting tired of it. Tired of living inside my small apt., tired of having to take car service just to get some fruit. As you can tell, I have not had a good week.

I would do anything to go back to my old treatment but that is no longer an option. It is very hard to call a body donation program to ask about yourself. Luckily, I had a Will done by the Cancer center volunteer attorney three years ago and my friend was listed. They required that. I hate these new meds. I feel nauseous, no energy. I eat very little these days. Nothing tastes good. And I fear being alone when it happens, but then in a way I guess everybody is alone. I pray for strength.

If I lived in a state that had the dignity to die act, I would get everything done and know I had that option. Unfortunately, NY is not one of those states. So just gotta put one foot in front of the other although it is getting harder.

Sorry for the length.

[kokopelli2017 in reply to kearnan]

hi Kearnan. I wish I had some great advice or inspiring words that would help. but I do 'hear' you and I am thinking of you💛. (yellow hearts signify friendship). although I know you don't feel it....you are most likely the strongest person I know of. I'm sorry to hear everything has become so difficult for you and that you feel overall lousy.

I need help now taking showers etc but it took me a long time to ask for help. I did not want anyone helping me and I hated losing that independence and I'm stubborn. but I finally gave in and it has made life more doable. could you maybe reconsider on having an aide come in and help out a bit. please think some more on it?

carole XO

[Hotlantaphatz in reply to kearnan]

Hi sweetie no need to apologize! I understand; we understand! I can hear your strength in your post. That is what we all need matter our situation. Keep posting; we are here for you!!! X stay strong

[jersey-jazz in reply to kearnan]

Belatedly, good luck to you with your new drugs.

[Hotlantaphatz]

Prayers are coming your way! Be strong!