Best Of
Re: My Husband, My Life, My Love, My Family, My Cancer
@shanagirl Thank you for taking the time to update us on your situation. I have been wondering how you were doing knowing you would be going through some tough procedures lately. I am so sorry you are struggling so much and pray the doctors can find a strategy to provide some relief. You are loved and thought about here. Bathing you in hugs and prayers.
Re: My Husband, My Life, My Love, My Family, My Cancer
Well, the force was with me on a terrible walk. I did use the walker, it was as bad as I remember, kept hitting right foot on the wheel then at time, it got away from me until I put breaks on. I did make it there and picked up the prescription, I did down a whole large bottle of water and did take rest breaks BUT once I got close to home, I was feeling the faint feeling. Got to my steps, folded the walker but was super tired at that point, neighbour helped me get walker to my place but I had to hold onto the railing to feel balanced. I think if my place had elevators, that part would have been easier to get the walker in but have to carry it up and when already feeling a bit faint, does not work.
I am no longer going to worry about walking with a walker, I don't like not seeing my feet, cane will suffice and get steps in the house. As said walker kept wandering off ahead, I found it difficult to keep my feet in that space, seat was nice but I almost lost balance getting up. If I had to, would take the bus places, bus stops are not that far away and feel more sure on my feet.
Also, even though it is only around 50 F, my face is bright red too so that may be an issue. As far as outdoor walking, that is no longer an option, indoor on treadmill will be fine, walk on the spot etc, shoot, sit my butt down and march my legs or lift legs in bed and march. One thing I will say is that all the PT on ankles and hips and such did come in handy to keep me up when a stumble could have happened. I also got 9000 steps round trip so guess that is good too.
Not getting rid of walker but tucked it out back instead.
Now getting something to eat, nice not to have fallen but will continue with my cane instead. Keep this experience to myself vs SIL, she has enough to deal with herself, wish she would tell me but have to wait til I see her. Not sure if epilepsy is getting worse or what. Again sit on my hands until we see each other. Once I have an appointment at the other hospital with my neurosurgeon, she comes for that and I will ask.
In the end, it is good to sort of add up the good and bad, good was no fall, almost stumbled but could catch myself. Did manage the walker most of the time except when it felt like it was moving ahead. Handled that well. Sitting along the way was good too.
The one thing I cannot do anything about is my thermoregulation even in cooler weather. My face was bright red, lets me know that it is not necessary to walk an hour outdoors but keep the legs strong in the house, walk around with a cane. Make sure walking to a bus stop if need be
I did not getMcdonalds after all, had my new snack of choice, putting Honeynut Cheerios into a peanut butter container, I must say that taste combo is really good and filling though may have to make an egg a little later.
Re: De Novo Stage IV
Dear @superdenovo37 , 56 cycles of Enhertu, wow! I remember times when during Cleopatra protocol clinical trials >50 injections of HP were wow… now we are on to most powerful ADCs and we manage them well. You are amazing, your team is amazing! You are there for your daughters and that is the best thing in this world… Many many chugs and keep us posted from time to time,
Saulius
bsandra
Re: Bone Mets Thread
@norah2024 - I understand what you mean about the tumor markers. My onc is basing his advice to me on the fact that my tumor markers are rising very slowly; like about 1 or 2 points every 3 months. They are in the teens somewhere now if I remember. He did say that if one of those suddenly jumped to a 50 (like the 20-30 point jumps you are referencing), he would take a different view. I didn't realize your markers were jumping that much. I also want to say how very sorry I am about your pneumonia. That sounds terrible. I have never had to deal with that and hope I never do of course. Reading about both yours and @irishlove 's experiences with pneumonia have been downright shocking. I wish you both the absolute best with your recoveries.
Re: STEAM ROOM FOR ANGER
Hello @klrtts3p.
Thank you for being part of our community and sharing your truth. I’m sorry you’re going through this, and I want you to know it’s okay to feel angry. This is a safe space for you to connect and share as you need. Please know that we’re here for you — today, tomorrow, and always.
The Community Navigators
Re: Capivasertib and fulvestrant injection
Thank you so much for your welcome, I will look into the thread you suggested.
It helps knowing there is support out there 💖
Kind Regards 🙂
Re: Can we have a forum for "older" people with bc?
Storm Melissa has canceled outstrip in Turks and Caicos. We had an excursion planned, but will receive a refund. Proceeding directly to Puerto Rico where our excursion had previously been canceled by the provider. They are offering substitutes, but had done them on a prior trip. So we'll just walk around. The last time we were here it was after the hurricane and so many of the shops were closed. It will be interesting to see if they have returned.
The passengers on boarded today were griping about missing Turks and Caicos and blaming the Captain. Thus is a week long trip forbtgem so I can understand from that person I active, but when you book a cruise during hurricane season, there are bound to be itinerary changes. We ended up sailing late because one passenger decided to cancel after boarding. Really inconsiderate since it delayed sailing for the rest of us.
betrayal
Re: Bone Mets Thread
Well Guardant or similar tests can pick up ESR1 or PIK3CA mutations even with bone-only mets. I'm not sure if the test works if you have very limited disease, tho. If the test showed zero mutations, it is possible that it was a bum reading, that can happen. Did you have any testing before, and if so, were any mutations picked up at that time? Elevated tumor markers can precede progression on scans by many months, so generally its a reason to start testing and thinking about alternatives, getting other opinions, rather than jumping to a new drug.
Re: My Husband, My Life, My Love, My Family, My Cancer
Re: My Husband, My Life, My Love, My Family, My Cancer
Well, slept pretty well, went to bed late as usual but did manage to shave a couple hours off the bedtime, aiming for more civilized hours today. I did some bed exercise, ankles with rotations and holding feet away from me and toward me, 10 of each. Some hip rotations to the outside as well and some crazy good leg and hip stretches and arm stretches as well, felt good. Later may pull up mr Paul Eugene and do his 10 min version of senior gold.
I do not have any plans as of yet today, I do want to get off my butt, organize the recycle area in front of the closet, get everything in one location, I do keep garbage in another big container, when it gets full, goes outside. The big 3 containers are good because there are tight lids on them. I also have laundry and the regular stuff to do.
Was unsure about what I wanted to eat, decided on Mcdonalds delivery. Got the deluxe cheese burger and added extra lettuce, tomato, onion and mayo. I like those so you don't pay extra for tomatoes and such. I also got a junior chicken extra lettuce and mayo, will eat the sandwiches together, happy with extra veggies added to both. Got fruitopia to drink instead of coke this time. Later today, will probably have an a frozen stirfry with an egg and pre heated peppers to make sure not too moist and possible cheese, I will see. It could not be too much cheese. Heat up in the stir fry package and add a few minutes, normally add 2 for a low wattage microwave but with extra stuff, bump up to about 6 min 30 seconds, will be yummy. I do like whisking an egg and add those right to the stirfry or pasta. I could also take the elbow noodles from KD and add queso after boiled, add grilled frozen peppers, garlic and whatever else I may want to add, I will see.
Well, I do hope everyone will have a good day. In pockets for all who may be dealing with pain meds cut in have, SE or progression, I am hugging all of you.