Best Of
Re: My Husband, My Life, My Love, My Family, My Cancer
@cookie54 @irishlove I am planning to phone DB this week. Sadness is not constant for me, I feel it for a bit then it passes. I am more interested to know what is ailing SIL then anything else. In some ways, I like the autonomy it gives me to do what I wish with the house, getting organized etc as well.
When it comes to getting some info on neurosurgeon referral, phoning RO office would be a place to start and go from there. I am not too worried at this point, feel like if brain was an emergency situation, stuff would happen quickly for me as it did last time. Still more info is needed. Still need to take picture of ambo ride and prove disability from sept. Did not get around to that yet.
Laundry has been started, need to spin and throw in regular dryer, other dryer cleaning up a towel used to pick up a mess on the floor. Need to consider some clothes to put in wash as well and use the hanging dryer in bedroom if regular washer not going. Bedroom and living room are on different connection than kitchen and bathroom. I still have the other heated drying rack that has a heater at the bottom. The cheap wee washers are dying one motor cuts off after 20 seconds but I will not replace it, can soak stuff before wash if really stained or soak silverware as needed for dishes. There are uses beyond traditional washing. Even though they were only 20 bucks and cannot feel bad about that. I will figure it out and again, no buying it again. Bras can be put into mesh bag and spun then hung up with the hanger, same with undies or other delicate items. I can also use the hanging dryer and tumble for less time. Not sure yet either.
I am going to have two meals with the delicious chicken I cooked up in some taco and cheesy old elpaso, fantastic stuff. Probably microwave an egg with some beans in microwave and some garlic and butter, once done in microwave, let cool, put in the chopper with some cheese and put some of the chicken in fridge with a spoonful or two of the pasta I mixed together, put all in a hot fry pan, stir around a bit and turn off heat with a lid, that would be good or save egg for dinner meal, I will have to see what I feel like.
EDIT, did add an egg to a hot frypan with butter melted at bottom, added some shredded cheese, rest of the combined queso pasta and penne pasta to the pan. Put some beans and the seasoned chicken in there too. Mashed everything together and am waiting for it to get cool. No chopping of anything, just wanted an easy meal and to finish beans in fridge, try to use them up in 4 days or so. Tonight's meal will also feature the chicken but may be combining with the veggie stir fry mix, heat that up and put in same pan, mash up more chicken as well. Also was thinking out chicken dogs, not seeing an issue with using those or beef dogs which are less expensive on to regular hotdogs. Put together a sample order for the future and I could save a bunch of money getting those instead. The seasoning would and could be the same too.
EDIT. the egg, pasta dishes, shredded cheese and ground chicken with beans were delicious, could not finish it all but really was so very good. Heating up, dumping in the frypan and letting it all cool was really good. The cheesy seasoning by old elpaso is a revelation to me. Next time I order stuff from walmart I will keep what I put together in a sample order. Also have added a crunchy cheddar fried onion seasoning to the list. Like I already said, not ordering now, going to wait 2 weeks I think because I still have a ton of food. Option two sees me take Paratransit over to Walmart myself once the snow melts.
I hope all are taking care and having a good day, I am in pockets for all as well.
Re: My Husband, My Life, My Love, My Family, My Cancer
@chicagoan and @eleanora Thank you for the birthday wishes. I have nothing on the agenda beyond getting some birthday treats for food. I spent 35 dollars for some chicken dogs that I will chop up and cook in the frypan, add some taco cheesy seasoning and cheese, got salad as well for my meal, many options available. I think the swiss chalet would have been decent but I can get more food with the Walmart order. I will post later what I come up with. Less than 20 mins and delivery from Walmart is on its way already .
As far as today, looking to continue the neverending floor sweeps, keep organizing my container, last spot that is crying out for it is in front of the front closet, put recycle stuff in the container with lid and it will all look really good.
Got some laundry underway and some pants to wash, will use the hang up drier as well since it gives me a lot of pleasure, need to wash up some yoga pants.
We got a lot of snow overnight BUT we go above freezing for a bit til end of November so it will not be sticking around. I am just so sad about that. 🤣
After I eat, I will continue on with chores, still calling RO to look into any progress with referral to neurosurgeon. I have social worker call on Thursday but no services I need at the moment but that is OK, if anything comes up, phone RO for another referral to social worker.
I will post with what I make for my meals today, not expecting DB or SIL at all and that is fine. Just called SIL but not available, left message I was hoping she feels better.
I do hope all have a really good day, in pockets for everyone as well. I already sang Happy Birthday to myself as well when I woke up.
Re: how about drinking?
Jazzy - great pictures. Thanks for sharing.
Wally -sorry about the lack of contractors to complete your jobs. I appreciate the LOTS of red wine.
NM - hope you have made progress getting Mom settled and started to think about YOU again.
BTW - my AST blood test was way up in September so the doc wanted to re-test. Liver panel…. Re-test on 11/6 was up even more. Guess I'll have to cut back on my drinking - although that hasn't really increased in the last 50 years.
minustwo
Re: How long have you been Stage IV?
@nwarren79 63.9 months is the median life expectancy on Kisqali, meaning that 50% of people live longer than 63.9 months. There has been a recent real-world trial of progression-free survival (cPFS meaning time to treatment failure of Kisqali) showing that the longer you make it on the drug, the greater the time to a treatment change. This is the Ribanna trial and shows: " the median cPFS was higher for all reference points: cPFS of 40.5 months (95% confidence interval 35.0-45.5 months) for patients who were progression-free 12 months, cPFS of 53.6 months (95% confidence interval 42.7-not reached months) for 24 months reference point, whereas for the 36 months reference point, the median cPFS was not reached." This is a very heartening study that also shows that after 2 years, the site of metastases (ie. liver) becomes much less significant. Of course the fact that 50% of us don't make it that long is immeasurably sad and we must find a cure. but, Live long and prosper!
Re: Are you currently (or have you been) in a Clinical Trial?
Just sit right back and you'll hear a tale, a tale of a fateful trip…to the hospital…again…
Hello everyone!
Welp, I must've jinxed myself. I was in the hospital for the last week with chemo-induced colitis from the Talzenna. I was on it for about 12 days when the problem started. It's clearing up, but the main concern for me is rising bilirubin.
They did a liver MRI to check for blockages that could be causing it. A tumor is constricting a tiny bile duct, and initially they said they would do a procedure to unblock it. However, the next morning, the biliary team, the primary doctor, and my oncologist, Dr. G, all decided because of the location of the duct (higher up in the liver than they usually go) that the risk wasn't worth the potential reward, citing there were plenty of other ducts to drain the bile and the timing wasn't right.
When the resident came to explain everything, she showed me my liver MRI. It is packed with tumors. I knew there were innumerable tumors, but I didn't realize how big they were—I thought they were small. I asked her what percentage the tumors were, and she said she couldn't give me an answer, but it was "a lot."
I really don't like to be blindsided. The truth might hurt, but all this time I could've been searching for information with more urgency than I have been. Bottom line is I need a drug that will stop/shrink the tumors and it needs to work fast. It could happen, of course, but I don't have a good feeling about this development at all. With liver mets, things can change on a dime, and for the first time in this journey, I'm facing reality and scared.
I haven't spoken to the oncologist yet—his next appointment is December 5th which really doesn't work for me—but in the meantime, I'll have appointments with the PA and hopefully they will communicate well enough with him to answer my questions. I believe he'll leave me on full dose, but he might reduce the Talzenna. Not sure. I'm also not sure what he has up his sleeve for next line, hence the need for an earlier appointment. Ugh.
So my objective now is to read through this thread a bit, do some trial research, and try to come up with some alternatives, either for now or at a future date. Esther posted about a service that takes your biopsy report and analyzes the markers for available trials—Genomic Focus—so I did that this morning. At this point, I don't really care where the trial is if it's a great fit.
Anyway, that's the story from here.
Hope all is well in your worlds—wishing you all peace, strength, and good health.
CBL
Re: How long have you been Stage IV?
@newfmamainoregon , wow. I hope you didn’t have to pay anything for that! I’m just getting the blood biopsy. Tissue testing three years ago showed no mutations. I guess my oncologist wants to see if any have developed. But I just got scans that showed great improvement. So my treatment appears to be working as it is .
aj
Re: How long have you been Stage IV?
New to this thread. But to answer the original question of this discussion, I was diagnosed with Stage IV in January 2025. I was diagnosed with Stage 1, Grade 3 breast cancer in July 2019, went through surgery, chemo then radiation, and spent the last 5 years on Tamoxifen. This Stage IV metastatic carcinoma is on my liver. Obviously, there is no way to know how long I had cancer before it was detected. So when I hear the whole 60 months life expectancy (with the therapy treatments I am on) it definitely freaks me out. I have been taking Kisqali and Exemestane for 8 months now, and my scans and cancer index tests are showing promising results.
Re: Are you currently (or have you been) in a Clinical Trial?
@soldanella @cure-ious & everyone:
Aww, thanks ladies… beating myself up is my greatest life skill, haha. Too bad it's not marketable, I'd be rich!!
So it turns out my situation is more dire than I thought. The final word on the stent procedure was that there was too much cancer in the liver to make a difference, so they're not doing it.
When the attending visited me yesterday on rounds, he said he had to talk to Dr. G and ask if treatment was possible or if I should be released to hospice. WTH? That information should've come from Dr. G personally. I said it that's the case, I want to go home today. He hesitated, and said maybe. I was like, No maybe, I want to go home.
So I was sleeping and missed a call that morning from Dr. G. I called his cell phone, and we talked for a while about what we can do. We decided on PARPi (Talzenna) and Keytruda (just as cure-ious suggested!) because we didn't give Talzenna a chance (I was off it more than on because of side effects) We did reduce the dose a level (1 to .75) of Talzenna and maybe reduce Keytruda too. He didn't say it outright, but I think this is definitely my Hail Mary and if anything will buy me a few more months. I'll take it.
While I was on the phone with him toward the end of our conversation, the attending called in so we hung up. About 20 minutes later, the nurse came in with discharge papers. Yay! I was out within an hour, so whatever Dr. G said to him lit a fire and I was outta there.
I still don't know how I got this bad and didn't know about it. I will definitely address that on Friday. It's crazy to me how that could happen. I must be in denial and not processing yet, or maybe I'm numb. I tried to ease my father into the severity over the last two weeks, but he was somewhat blindsided as well. I guess no one can ever really be prepared for it, but at least now he knows and has a little time to adjust and make plans to come out here when it's time.
Anyway, it's kinda here nor there at this point. I need this to work at least a little bit and fast because I'm already showing symptoms of a liver shutdown.
That's the unbelievable crappy news from here…
Thanks again for all your support and knowledge and understanding.
CBL
Old implants, new cancer diagnosis. Want lumpectomy with implant removal at same time.
I just received a new cancer diagnosis and want to proceed with a lumpectomy. I have 30 yo implants I want to have removed at the same time. I'm afraid of looking disfigured afterward.
knthrock
Re: Ribociclib/Kisqali with Letrozole - Any one on this combo?
@ radiation_cinderella, I take kisqali after breakfast too. I hope you are feeling ok. Take care of yourself. Hugs x
@tougholdcrow, I've tended to drink peppermint tea but I'll try ginger tea instead. Also the unsweetened chocolate nibs (once I source them).
Apologies ladies but I thought I'd posted my reply. Hope you're keeping well. Thank you for your advice.
My GP thinks I have chronic constipation and that's causing my digestive problems. She's px laxitives - movicol and senakot- for 6 weeks. I've thrown up twice so far since taking them (2 weeks). The nurse at my hospital today told me to stop taking the laxitives and to change from esomeprazole to a different PPI and to increase dosage from 40mg daily to 80mg daily.
Also today the same nurse decided not to access my port and took my bloods from my veins. She said I didn't need to have my port accessed until every 8 weeks which was news to me. Who knew! So now I'll attend the nurse at my GP's surgery for my faslodex injections and to have my bloods done every 2nd month.
Take care xx