My Husband, My Life, My Love, My Family, My Cancer
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congrats living !!!yay.
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Mara,
I will most certainly try a few of your suggestions (if I can remember to
)! Seriously, the repeating idea is one I’ve heard before but have never had to use it. I do think it is a very good idea.Living, congrats on stable. I used to think that unless there was tumor shrinkage or NED that things were not working correctly, but I now know that stable is very much as positive news as is shrinkage or tumorelimination. Good for you!
GoKale, do you have long-term disability insurance? I have it but never knew exactly how to use it or even if I needed it. Turned out it was the best thing I could ever have invested in, especially with having cancer or any debilitating disease. Because MBC is a terminal disease, there are very few reasons that someone would be turned down for disability, at least those with a long-term disability plan. That’s what it’s for. There are lots of other things that I could say but because everyone’s plans are unique by company, and by plan, I’ll just say that you should look into it and pull the trigger as early as you can. I am SO glad I did. We are financially better off now then when I worked. No joke, and I could not believe it until I saw it for myself. But it’s true. Hoping you have something similar in your company plan.
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So happy for Mara and Living with good scans!!!!
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LivingIVlife doing the happy dance for your stable mable results.
Tanya
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living, congrats 🎉
Emac, inyour pocket today too and hoping for good results as well.
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Mara, good for you. I’m glad you’re feeling better.
LivingIVLife, congratulations on stable. Still waiting for my results. I’m not used to it taking this long trying to be patient.
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Living, Congrats to you on stable and some shrinkage!
KBL, Sorry no results for you yet. Fingers crossed that it’s all good.
I’ve had a couple days of prednisone for my hip pain and boy do I feel perky. Still some pain here & there but I’m betting the perky is thanks to the prednisone. Started the taper down so we’ll see. (Seeing ortho doc on Friday.
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Thank you everyone! Now I hope to actually sleep tonight.
KBL- it's hard to be patient but in your pocket for good results
Rosie- hope the orthopedic will find a solution to help with the pain.0 -
Living- Woohoo on stable scans!!!!
Tanya- This Covid vaccine stuff. Who knows. I got shot #4, but was it the right thing to do???? Who knows. I don't want another one for a while. Shot 2, 3, and 4 all gave me a fever of 102 and a pounding headache. They seem to hit me hard. I got the flu vaccine in October and didn't feel a thing.
Memory issues- I called a friend the other day. Had not talked to her in a month or so. She asked if I had seen my MO since we last talked, and did I have anything new to report. I could not for the life of me remember when I saw my doc last. I hummed and hawed trying to cover up my confusion as I desperately tried to remember when my last appointment was. I laughed and said that nothing is new. After the call, I got out the calendar and noted I had a MO appointment 2 weeks prior. But I could not remember and felt really confused during the phone call. That type of thing happens periodically. Stress. Meds. Who knows. But it makes me feel dumb and kind of shakes me up for a bit.
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Thank you all. I’ll keep you posted.
Candy, I’m sorry you couldn’t remember. Ugh.
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yay stable scans! So happy for Mara and Living! Still waiting with you KBL!
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So, Halaven isn't working so I'm about to start Fulvestrant and I think it's Abemaciclib, at least I get a break from chemo for a while. Living congrats on stable, waving hi to everyone.
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Thank you, Kikomoon.
Kittykat9876, I’m sorry you have to switch. Hugs.
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Kittykat- Hoping that the new treatment is easier for you. Abemaciclib (Verzenio) can cause diarrhea. Keep us posted and praying for you.
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Kittykat, I am also sorry to hear you have to switch treatments. May the new drugs work for you.
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Kittykat- I'm sorry you have to switch drugs. May the new treatment be easy on your body. Hugs and prayers sent your way.
KBL- still in your pocket while waiting for results
If anybody is in the midst of the snow storm keep safe.
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Thanks everyone, I had my first fulvestrant today, I had no reaction to that so far, I don't start verzenio for a couple of weeks, I need some surgery first, just waiting now for a date from the surgeon.
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Kittykat sending hugs all day. These drugs can do miracles.
Tanya
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Thanks Tanya, this is my 6th treatment in just over 4yrs, I hoping this one will give me a good run.
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Kittykat - sorry that you have to switch drugs. I hope this new combo is effective and easy to tolerate.
LivingIVLife and Mara - congrats on the stable scans. So awesome!
BooBoo- no, I did not sign up for disability insurance. I thought that it was just an income replacement if I became unable to work. I put in an email to the benefits administrator just a few days ago, but I haven't heard anything. I will try again late next week or maybe phone them.
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BooBoo~my memory is foggy and difficult as well. I forget In the middle of my sentence what I'm talking about. It's annoying to me.
Rosie~ steroids can pep your step for sure.
KBL~ waiting with you!
Kitty~ I'm sorry halaven didn't work. How annoying.
I'm worried of course for progression this time around. My lungs are annoying me. Not used to this feeling. So we'll see. I have asthma. And I haven't been feeling good. A lingering cough and mucus. But the mind worries. When you're a cancer patient
Available for pocket duty. As needed. With snacks. Coco bombs for hot.chocolate! Yum
Love to all. Hello Tanya
(Apparently a lot is annoying me in this post lol
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Thank you all. I’m floored it’s taking this long. They called me today to let me know the radiologist was reading it today. It’s been four days. I’m going to ask what’s going on. I’ve never had it take this long. Customer service isn’t what it used to be.
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KBL, I read an oncologist on twitter who said her entire health network is fried due to Covid. Staffing shortages are so grave & they're over capacity with pts that everything is taking ages. There are no porters to run samples or move pts, clerical & admin is decimated etc. So I think in some areas it's just rippling out. Hope you hear very soon!
Micmel, I hope your lung thing turns out to be nothing!
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Moth, same story in Ontario too. Hopefully this reopening of things will not cause more healthcare overload.
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Thank you, Moth. I think if that’s happening, they should inform patients not to be alarmed if it takes a little longer. I don’t like being in the dark. I would totally understand it if they maybe presented a paper stating due to this reason, your scan may take more time to be read. I’m sure even when I go in Monday to my appointment, they’ll act like it’s normal. Just tell me the truth so in the back of my head I’m not thinking they’re holding it so I don’t see bad news. I actually think everything is fine, but I won’t be totally okay until I read that stupid report.
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I thought under the new US rules they had to post to your portal right away & can't hold?
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That’s what I thought too. I will be calling again this afternoon.
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In Australia results aren't available to us until after the doctor has them, I have to wait 7 days before I can access scan or blood results, which is fine by me because I've always seen my oncologist and gone through them with her by then anyway.
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Mel, I'm sorry you're having one of those days. I hate that feeling of being annoyed and everything and everyone. I hate that we worry about every little thing, fearing that it means the spread of our cancer.
KBL, that really sucks that you're still waiting for the results of your scan. As moth said, it's probably just a backlog with so many people being out with COVID stuff. Even if they sent out a form letter saying,
"Hey, ¾ of our people are out and the rest of us are working as hard and fast as we can." Maybe it wouldn't help our anxiety, but at least we'd know why it was taking so long.Sometimes, I get results right away, but sometimes it takes a few days. I don't know why some take longer than others. I get my blood work done the day before I see my MO. The CEA and CA 27.29 come back within a few hours, but the CBC and CMP take a couple of days – even though she comments on my CBC and CMP numbers during our visit.
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Patient portal results--- I go see my MO the same day as my scans,, since I live 2 hours away from the cancer center. We scan, say, 10am, and see the MO at 1pm. I usually just read a book while I wait, but at least I don't have to drive back home and make 2 days out of it. By the time I get home my labs are posted on the portal, but my scans do not show up online for 7 days. Why??? Something on how they have the system set up. I get my results that day by talking with my MO about them and our next plan of action, but I like reading the typed report myself, and I have to wait a week to read it and really can see what the radiologist has dictated.
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