Best Of
Re: TNBC MBC Stage 4
❤️ morning all, for those in the USA happy Labor Day.
Sitting with my coffee, and cat purring, breeze and sunshine through the window, lovely! Have the day off and it’s so nice to just sit and not get ready for work. Been super busy, the new semester started last week, am teaching 3 classes plus my AVP role… thank goodness I work from home lol. Fatigue effects my stamina in the body bit not the mind or the heart, so all is good. I meditate during the day when I get tired, which is super helpful. A 20 minute mindfulness meditation and I’m recharged. I start the day, mid day and end the day with a 20 minute practice. The fall weather is slowly beginning here and it’s amazing. DH and I have been going out for short walks in the park and before toy know it I’ve done 6k steps. Amazing.
@nonni2015 how scary about your allergic reaction and how wise you are ! There is always another step to take and an appreciation of the moment as well. Keep us posted ❤️
@cookie54 the ups and downs of calcium and Vit D..it’s always something lol. Gosh, but love your attitude with these small annoyances. That’s actually how my MO described the skin Mets as annoying… I could live without annoying lol… but alas lol…
@scgal08 I too keep my eye on the clinical trials thread, what a great group share that is ! I read about those two you mentioned as well. I have high hopes for the tnbc trials, keep us posted on what your MO recommends for you. The treatments keep changing as they test more, I’ve been fascinated by the vaccines as well they are testing. Right now The Navelbine seems to be working, keeping the Mets in check, nothing else popping up. It’s been 6 weeks which for me is good !
Happy Monday band big hugs to all ❤️🥳❤️
Re: Are you currently (or have you been) in a Clinical Trial?
Hi Tinkerbelle!!
I was on pitavastatin, and it worked well with much less muscle pain than the other kinds of statins gave me. However, I had to go off of all statins for the trial I am on, because its somehow not compatible with the trial med. In future, I really want to go onto a PCSK9 inhibitor, which has (at least in the lab) multiple powerful anti-metastatic cancer activity that statins do not have, and drops the LDL by like half, way stronger than statins. It can also raise up the good cholesterol HDL, and lower triglycerides. Unfortunately, it is incredibly difficult to get, because insurance insists you go onto a statin, since they are much cheaper, and they really don't care if you can't tolerate a statin. I even had a prescription from a cardiologist who wrote I really need it, but again, they don't care, you only get it if your cholesterol numbers are some very high number, basically through the roof. In terms of metastatic cancer, it has the potential ability to prevent mets from forming for many solid tumors and synergizes with immunotherapy, which is when I would want to take it, so I hope some cheap pill version will have come on the market by then (its an injectible) or otherwise I will have to go pay for it myself. The data look promising that it should have very different (and much stronger )anti-cancer activity than a statin. But of course statins have anti-cancer activity in themselves, because high cholesterol can drive cancers, its just that the PCSK9 affects other things independent of cholesterol levels that are needed for a cancer to metastasize, so it has additional activities statins don't have. I'd love to try it and see if it prevents new mets from forming, and/or shrinks mets while also fixing the cholesterol. It is also cardioprotective, blocks the atherosclerosis one can get from immunotherapy.
Re: Are you currently (or have you been) in a Clinical Trial?
Oh CBL, what a huge relief!!!
Liver enzymes just are a thing. At month four checkin in the trial I am on, the liver enzymes jumped way up out of normal. Dr at MDA said its fine, we just watch it, but the pharma guys were not at all cool with that, and they had me re-test the following week at home, and they came back normal range. Then I went in two weeks later for the month five check and the liver enzymes were way back up again! Dr said the pharma guys had been panicking about them and they would go ballistic now, he had to talk them out of dropping me from the trial, because their competitor had problems with high liver enzymes from the drug. So they had me re-test in two week, the numbers were back to normal. I was sure they suspected I was a closet alcoholic or something, probably hitting the bar as soon as I landed in the Houston airport, but i haven;t had a drink in a decade and I did actually have a bad cold each time the liver enzymes were high. Tthe second time I also had a spike of monocytes out of normal, so it can just be from a cold, I guess for some people anyway…
Re: Are you currently (or have you been) in a Clinical Trial?
Ha!, CBL, I love your humor!!! Yeah, I could literally kill for a margarita or glass of red wine sometimes, but the cancer is far more important and dropping alcohol was probably a good thing for me anyway… Well the drug team knew their trial drug wasn't the problem, because the liver enzymes were fine for the first four months. They might have been wondering if I was messing around with odd supplements or alcohol or whatever outside of the agreed-upon protocol, which, as you know, is verboten, but the Dr let them know many things can cause transient jumps in those numbers, and since then its been fine
Re: Can we have a forum for "older" people with bc?
It was once said that the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped.
betrayal
Re: Can we have a forum for "older" people with bc?
I second the recommendation for sentinel node bx. And the welcome. I too am well past diagnosis & active treatment, but the SNB made a significant difference in my treatment plans. I read every day but don't post often.
minustwo
Re: Can we have a forum for "older" people with bc?
Welcome, ninaca and teka. I am not sure if you have posted before but it is nice to have new voices on this forum.
I think this is yellow jacket season pretty much everywhere. At dinner day, one tried to drown himself in DD's beer. She kindly dug him out and he gets to love another day, albeit with a hangover.
Happy Labor Day to everyone.
betrayal
Re: So...whats for dinner?
Minus, While I used to have very long hair I keep it close to shoulder length now. I make sure it’s long enough to put up and wear in a ponytail. There is a Nothing Bundt Cakes just outside the city I grew up in. There used to be a famous discount store called Spag’s across the street from the location. The store is no more but there is a memorial marker. I’ll have to drive the hour and a half to see the memorial and taste a Bundt cake.
Carole, I’m glad you had a busy farmer’s market. I think people are watching their wallets these days. Rhubarb crisp is so good.
I spent the day at a local outdoor art show helping my walking friend with her booth. I saw so many people I know who thought I had disappeared since I can’t attend indoor events any more. My friend sold many cards copied from her watercolors but not much else. She did sign up quite a few people for art and French lessons. I enjoyed the day.
Dinner tonight was chicken in a Dijon, scallion and cherry tomato sauce on rice. I’ll make it again.
maggie15
Re: So...whats for dinner?
The potluck dinner was good. Meats were smoked turkey and sliced roasted chicken. Sides were baked beans, cheesy potatoes made with hash browns, pasta salad (my favorite). I had a generous portion of pasta salad, a small serving of cheesy potatoes and a few pieces of chicken. Mary made two rhubarb baked desserts. I had one that was very good. Rhubarb crisp with a scoop of vanilla ice cream.
The gathering was small and quieter than in previous years when the event included karaoke and went late into the evening. Not everyone attended. Some had other plans or company for the holiday weekend. Things change.
The farmers market had swarms of people. Once again we made some sales but nothing like the last two summers. We're down to putting out all our bowls on display. Next Saturday will be our last of the summer. The following Saturday dh will play in a charity golf tournament.
Re: So...whats for dinner?
Carole, Enjoy the potluck meal. It’s good to have a scheduled get together before neighbors head home after summer.
Wally, It’s brave of you to cut your own hair. As a teen I cut my family members’ hair but would never attempt to cut my own. My dad paid for it to be done professionally figuring he came out ahead. Hopefully you can fish in the more walkable location.
Dinner tonight was fish and chips for DH and leftover spaghetti for me.
maggie15