Best Of
Re: So...whats for dinner?
Eric, hope Frankie feels better soon. Poor guy. And we feel so helpless when they hurt.
No idea if we'll have leftover 'za tonight or find something enroute home from Seattle. Crossing fingers for this appointment.
wallycat
Re: So...whats for dinner?
Minus, so sorry to hear on the expensive/disappointing meal.
We had frozen tombstone pizza tonight.
We're heading to seattle tomorrow for my sweet DH's oral crap. I'm tired of crying.
wallycat
Re: CT and Lung Nodules
My chest CT showed consolidation in my right lung so my pulmo prescribed a steroid pack. I haven’t noticed any decline in my breathing and today my PCP couldn’t hear any crackles in my lungs so I’m hoping it will go away. The nodules in my left lung were pretty much the same.
My ultrasound showed that the thyroid nodule got smaller from the radiofrequency ablation, 33% by my calculations. I don’t see the thyroid surgeon until December but I think she’ll be pleased.
Next up is a lumbar puncture on Thursday. Happy Halloween!
maggie15
Re: My Husband, My Life, My Love, My Family, My Cancer
@cookie54 I am grateful you are having no mouth issues, that certainly makes life easier. In your pocket that bone density has improved for you and yes I did see the devastation. Very sad but glad to see other countries are coming together to help, even Trump is pledging help which is good.
I wound up in bed early yesterday so woke up earlier and still had 8 hours sleep. I am exhausted but that is not unusual the first couple of days post Herceptin so nothing to worry about there. No real schedule except for getting recycling out, have a lot of containers that held cat litter to go out and multi paper bags to recycle from Walmart. I am also working on organization in the living room. Got several containers left to organize and put in a more sensible arrangement. Will put my instant pot and the wet dry vac in one or two containers and they can be moved out to the living room. Wet dry sitting on top of one of the washers but does not need to take up residence there.Recycle needs to be corralled too. I do put stuff in the bin outside as I run out of room in my house to store stuff.
I am not sure what I want to have for breakfast, have a craving for the Mcdonald's I did not order yesterday.
EDIT I did order an egg mcmuffin meal with two hashbrowns, extra butter and mayo and tea. It should be good. Later planning to open beans, add some spicy bbq chips and chop those into the beans and add the mix to some mexican rice I will make I think, that would be a fairly healthy meal.
I actually was missing DB so I called him and just talked to him. I did mention my annoyance at the brain cyst. He said it is OK to feel upset about it. I told him that in thinking about it, I knew what I could be facing and could not sit around and cry all the time and that I need to pay attention when I see the doctor. I mentioned that I was concerned about SIL and will be glad when she feels able to tell me what is happening, told him I was not angling for that info. Will wait until she wants to share. Told him I may call sometimes so we can keep contact, we are not doing groceries anymore as I can get what I need but a visit to have a coffee and chat would be good and I did apologize for assuming he could or would do stuff for me without asking if he could. It was a good chat and we did tell each other that we loved each other. This got me feeling better about things.
Thinking I could have a mini pizza and a half slice of garlic english muffin for dinner, I did not get much done today, napped on the couch a lot but I am unbothered by that either. I can take garbage and recycle out next week, keep them out back til next week on garbage day in the garbage bin, recycles are still going into a large container. Tigger has made a new hiding spot on top of the bigger bin lids but that is fine. At some point, plan to put the instant pot in a container as well as the wet dry vac, probably separately.
EDIT did not have pizza and garlic muffin, wound up having peanut butter and some of the honey nut Cheerios, was good as usual. Probably have pizza at breakfast, I will see.
I hope all had a good day, Happy Halloween to those celebrating with scary movies, handing out candy or whatever you may do. I was in pockets all day long as well.
Re: So...whats for dinner?
Happy Halloween.
DH's driving is getting scarier. I don't think he knows I take a beta-blocker I take to make it there…ugh. Not great news…surgery is out of the question due to the jaw necrosis. They did xray and found "something" unsettling…more cancer that has spread to the jaw bone…but there is no treatment. Not sure what next steps are. He's doing labs Monday to see if the new 17K/month pill is working and hopefully oral surgeon and onco have a discussion on what is next.
I had leftover 'za last night. I'm making air fryer potato wedges and either a frozen burger patty or scrambled eggs with some sort of veg. I microwave my potatoes whole; let them cool and refrigerate overnight. Then I slice to my preferred sizes/shapes and coat with oil/seasonings and air fry. I get resistant starch, a creamy inside and faster cooking.
Carole, I wish I could try your mustard greens. DH won't have them. Too bitter. He doesn't like vinegar either. My mouth is watering reading your post.
Super windy day today…glad yesterday was calm and nothing shut down.
wallycat
Re: So...whats for dinner?
Didn't eat much tonight. Yesterday we had a vet appointment for the dogs and today, Frankie had some intricate and painful, but minor surgery to remove a tumor on his eyelid.
He's home, but certainly not happy. I'm not sure if the whining/low howling is from the ketamine (it makes dogs act weird) anesthetic, or the gabapentin or extreme pain.
eric95us
Re: Stage III Cancer Survivors ...Five + Years and Out.
I was diagnosed Stage IIIB in September 2009 and after infusion chemo, radiation and 5-1/2 years of aromasin, I am now Stafe IV matasticized to lung and bone as of July 2016. All I can say is if you are ER+ stay on the AIs for as long as possible and get a scan every year or two so you can catch it as early as possible if the big C decides once is not enough. I wish you peace and try not to worry too much but be cognizant that you must always be diligent.
Re: Stage III Cancer Survivors ...Five + Years and Out.
hello all
I hit the five year mark this month! I was so worried that I would not get to see my first two new grand-daughters grow up. Now they are 5 and we have one that is 3 and a boy coming in May. God is good! This site was invaluable when I was first diagnosed. Stay strong and believe! Losing is not an option! Happy New Year!🎉
Lizb58
Re: Are you currently (or have you been) in a Clinical Trial?
Thank you @mommacj and @cure-ious for the great information and posts. I researched all of these before my appointment this morning and put them on my list of questions to ask. I'll try to make this a short post but there's a lot to say.
It's more or less what I suspected...this Talzenna needs to work and it needs to work fast.
I didn't see Dr. Gruber today--I saw a PA I'd never met before, but I liked her and trusted her answers. I had a huge list of questions, and what she didn't know, she called Dr. G about and came back to tell me what he said.
My first question was what am I looking at if the Talzenna doesn't work? She said months. She couldn't or wouldn't tell me how many, but months. I'm guessing 1-3 if my lab numbers don't start coming down, but that's only a guess.
They've held the Talzenna for 16 days now, thinking it's the cause of the colitis. But I checked my calendar, and I had loose stool for 16 days (I thought it was from eating raisin bran, lol) and 5 of those days were before I even started the Talzenna. The bad diarrhea didn't start until day 12 of Talzenna, so bottom line is I don't necessarily buy that it's chemo-related.
They wanted to hold the chemo until a few more tests came back and to make sure the colitis and pneumonitis had resolved, then possibly reduce the dose. I said, That doesn't work for me. It'll be another 4 days before I can start a new dosage, and I don't want to wait that long. The colitis won't kill me, the pneumonitis won't kill me, but the liver will and I'm not willing to wait. I'll be honest, I have full dose pills at home and I will be taking those starting tonight, at least for the next four days. I don't mean to be an a**hole about it, but I can't afford to wait.
I also told her (long story short) I'd tried Fibercon to stop diarrhea the last time I had colitis, and it worked. Unfortunately this time it backfired and made it worse. I did more research and Metamucil (psyllium husk) is actually recommended as a diarrhea treatment, so I started that yesterday. I only took one dose, but already took a dose today and it has improved already. I also have a bunch of new drugs from my pulmonologist, but haven't had the opportunity to use them yet, which I will be starting today. They want to see me Monday to repeat labs and check to see if I'm feeling better, and I will do my damndest to make sure I am.
I asked her to review my list of possible trial options. A few might work, but because of the life span exclusions. I'm not sure I qualify for trials anymore, so that sucks. Tomorrow I'll be researching compassionate use drugs so I have another option. She did say that hormone blockers have run their course for me and in the metastatic setting, they usually don't do drug combinations. At this point, I feel like I don't have time to try much else—it's Talzenna or hospice pretty much. Possibly a CU drug if I'm lucky.
I'm still processing the news. I'm not big fan of toxic positivity which I believe can do more harm than good, but there's always hope that Talzenna will work like gangbusters and kick the cancer's butt for a while. It happened a few years ago with erubilin, and could happen again. There's also a chance I could win the lottery or appear on the swimsuit edition of Sports Illustrated too, so there's that...
Anyhoo, that's the story from here.
Thank you to everyone for your input, incredible research, and support. I've learned a ton, and I feel like I've been the best advocate for myself that I could be thanks to all of you.
CBL
Re: My Husband, My Life, My Love, My Family, My Cancer
Mara - I love the conversation you had with your brother❤️❤️. I miss mine so much…..he’s been gone 4 1/2 years.