Best Of

@mkestrel

🤬 To cancer! I know that some members here have had liver progression that was treated locally so they could stay on systemic with no change. Threetree did some research on that topic.

Rooting hard for you that there's a good solution. 💕

Dear Mara

So sorry for your difficult and upsetting news. It's very scary, but you have triumphed over it before, and we will all be with you in spirit as you triumph over it again.

❤️

Oh Mara, I am sorry to hear about your set back. You are good to point out some positives which is remarkable. Yes I agree that getting a social worker involved is a good next step. I shall increase my prayers for you and that your RO has a good plan which works in your favor. You have worked hard to keep your muscles strong chich is also good.

Mara,

So sorry to hear your disappointing and scary news. In your pocket as you take things one day at a time and learn what next steps will be needed. Getting the social worker involved sounds like a good idea. Enjoy comfort food, music, movies, breathing exercises-whatever helps you deal with this new stress.

OK, saying this because I am upset, FUCK. Not a nice word but not a great scan.

The blood pool is gone, good for that I guess. What really effing sucks is that there is some cyst with blood which is not a good thing. Not calling a met but will have to see my person who did my brain surgery back in the day. Looks like surgery to biopsy possibly, it has grown as well so likely even if benign, surgery will likely be in order, if it is cancer, my RO would radiate the area again. Better than whole brain radiation any day of the week and better than a swollen brain any day of the week.

So history on brain, 10 cm met, big ass bugger caused seizures and a lot of swelling. My eyes would randomly feel like they would pop out, yuck. Craniotomy to remove as much of the gross stuff as possible. Knew there would be a return as part of the met wrapped around a blood vessel. Felt really jumpy at that time due to the steroids. Got the horrid whole brain radiation, I could not follow TV but got through it. This was 2016.

2018 some recurrence in same place, radiated the surgery site and that was manageable, no real issues with that.

2025 I will find out what needs to be done, done it before so although it sucks, just breathing slowly for now. It has been 7 years and RO says that if need be, she feels fine doing another radiation on the spot, I am good with it.

One good point if I can it that is that any progression has occurred where the original surgery was done. After that surgery was told to expect progression since a small amount of the met had to stay due to being wrapped around the blood vessel.

I cried and made a quick call to SIL, she was understanding and when the appointment with the dr who did original surgery will give me more info on what I am looking at and SIL is coming because she is right about me being emotional. She wants to write down what he says too.

I also requested social worker because at this point, I need support and SIL is dealing with something but did not want to discuss it on the phone, I understood and did not push. I guess they felt I was demanding of their time and did not say could or would you do this and that. Gave me more understanding. I did tell her groceries are no longer requiring them to drive me, keep the Walmart delivery coming here.

So, will be awaiting appointments for the surgeon, not sure what it all involves, I will post once I know more. I did some crying already as I am scared but telling my brain to relax for now and wait til more info is given, I imagine it will not be long either. I am following my own advice, one day at a time and no what ifs. If radiation required on that area is needed, my RO said she would do it. Would be the third brain radiation BUT I have not had radiation there since 2018 and radiation to that location only did not F me up. Only thing that may suck are steroids but whatever. If I become an in patient at the hospital and decide to walk around circles to music to alleviate any boredom, will make sure to wear shoes. got stress fractures from just walking in socks.

Got my ondensetron script though so that is good

So bad news means mcdonalds order, not too sure what I want, possibly a big mac meal. I am really hungry.

@chicagoan You are right, been reminding myself that I have done all this before, does not mean I should not be afraid but nothing at this point is new. One day at a time and see how it goes. I did call SIL and she was good. I am over my upset of our last convo and have more of an understanding of her and DB. Will continue get my own groceries etc. She will come with me to see the surgeon once the appointment happens. Even if benign, still need to drain it out since is growing. I admit that I am surprised that if this turns out to be a met, post surgery, there would be radiation and that would be the third time. Oh well, RO did say since it has been 7 years since last radiation, she is confident in doing that. I don't have much of my own hair left so radiation will not cause too much more loss.

I also remind myself that is pure luck that all stuff that happens for me has been in the surgery site, the original spot, no spread in other parts of the brain. That is rare and I am oligometastatic as well, have not progressed from the neck down which in itself is pretty cool. Just got to relax, breathe slow and walk on the treadmill.

One good thing, they did some neurological tests and they think my muscles are strong which is good.

Thank you for the support, I am always in your pocket for what is going on with you and I appreciate the support I have here including you.

@mkestrel, I totally sympathize with you, especially about the treatment changes. I'm a step behind you, just started everolimus, though mine is paired with Faslodex. My dr has switched my treatments at the first sign of new lesions, and it just makes me feel uneasy because I seem to see others in holding patterns and I'm feeling like things are accelerating for me. Like you, I see the options dwindling.