Best Of

So it took forever as my scans were last Tuesday but results just posted to my patient portal as I was on my way to meet with my MO this am. Good news is that I remain stable for which I’m so grateful. My mind started playing tricks thinking CT is being held because something is bad. It’s part of the worrying that we all do with this stinkin’ disease. I’m all set for my right knee replacement on Tuesday and will get a break from Ibrance for 2.5 weeks. Since I’ve been on it for 5 yrs my blood work is starting to drop a bit more when I get labs done. Looking forward to that little vacation 😅.

Sondra - so sorry you had progression again. Fingers crossed that the new med will kick the beast within and help your pain.

Here for pocket duty for all in need🥰

Sondra, glad you had a good visit and that they are coming to London tomorrow. I empathize about lack of appetite and also moving drug to drug takes a lot out of you. Hopefully sleep will come easy for you, in your pocket, could tell you more of my cooking ideas to send you off to sleep.

Have to shout out a random guy who used to live here, was taking out garbage which was 4 layer bag and bag of recycle cardboard. I rolled the garbage bag down the stairs, he saw me doing that so he grabbed my stuff and took it over. That was nice of him and I dropped the huge box the portable washer in as well. Glad it is out.

@snow-drop yeah, I do worry that we have been changing around so quickly,but the bone biopsy showing the shift to HER2+ was a shocker and neither of these tumors is very small and unfortunately they are a)growing quickly and b) impacting quality of life. I asked about cryotherapy again and both are too large for that, radiation isnt an option as it failed on the hip, and my providing trust is very very conservative so anything else novel like surgery wouldn't be an option. I want to get started on Enhertu and then send my scans off to the US for a second opinion read. My MO sat on both these tumors for too long and they just have not 'behaved as expected' - well geez, sorry about that but surely you have seen this before?

@illimae Im hoping for the best but been burned too many times this last year. If it can resolve the hip pain and allow me to walk more easily in the future ill be happy with that, despite the side effects.

Had hubs get some fancy chocolate milk for me thinking that would be appealing and calorific (it was go to when I was on the cycling team in college and we had low appetite from training/races but needed to eat/calories) and boy was it ever! Mixed that + some Califa coffee drink over ice this morning and it was like just inject this straight into my veins! Finally some easy fast calories I can tolerate without having to mix up some powders or blend anything.

Alright, off I go to my infusion, lets hope for no allergic reaction this time and that it works quick.

sondraf, have you considered local therapy like neurointerventional surgery? since you have only 2 tumors in spine that haven't responded to therapies, that could be an option. honestly I don't know which is better, changing the treatment when we know it's not going to work, or staying on it in the hope that it just needs more time to start working. my MO is the opposite of yours, I developed massive progression in my liver (from a few mm to 6 solid tumors plus numerous lesions within 3 months), and these stupid tumors have been growing slowly since then, 2-3 mm with every scan. his intention is to keep me on the med for a year (probably no matter what). I am beyond frustrated and tired of fighting with the system.

Irishlove, thanks for sharing, good to know that SERDs eventually impact our livers. I am on Elacestrant, a newly FDA-approved SERD. can't they just develop meds that don't affect any other organs and focus on destroying cancer???

hugs

@mara51506 agree about the upheaval of another drug change - this will be my fourth in 15 months. But I felt relief that we are switching as the anxiety of knowing things were not improving on this drug and wanting to move to something that will was upsetting. I want to get the show on the road here!

Safe journies for those testing and for loved ones coming to visit. I hope the MO's figure out a game plan and implement it without difficulty. By now I should have adapted to living scan to scan, but in reality I haven't. Aha, there's a pill for that called lorazapam, I'm allowed to take 1/2 tablet if I find I am getting too anxious. It does work and doesn't leave me loopy.

@illimae Oh I love the crow stories. My two or three adults come every morning sqwaking for food. They love the dry cat foot that I put out for raccooms and possums.

Today mom and pop cardinal were mouth feeding there juvenile. It was so sweet to see. A dove decided to use the birdbath and that too was adorable. The best up squirrel makes he was up the pole to the bath area and enjoys a good fresh drink, too. They sure keep me entertained.

I'm gonna switch gears here to share a brief portion of a health related clinical trial. I can't recall all the info but what caught my eye made my head spin. The teams were looking at women who have developed Non-Alcoholic-Fatty-Liver-Disease. I looked the subject up since my last scan mentioned I have steachosis of the liver (related) and this shocked me. Turns out they found certain drugs can create this problem, including tamoxifen as it's used to reduce estrogen. No further information on other SERDS, but I'd say it's a fair bet that any SERD will do this. Good question to ask MO what they can do to protect our livers?

May each and everyone of you have a blessed day and pain free too. In pockets for good scans and Shanagirl hope your trip wasn't too exhausting. Laurel

@sondraf I’m sorry you had bad scans but I’m encouraged that you’ll be able to get Enhertu. It has been challenging but my results have never been so good for so long and I wish the same for you.