My Husband, My Life, My Love, My Family, My Cancer
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@threetree WHeeew!!! that was scary for you. I’m glad everything is stable and it got straightened out for you.
@mara51506 on your pocket, girl, as you continue to deal with the situation with DB & SIL. Yeah, maybe they need some space right now, at a better time you can sit down with them and talk about it with them. I’m sure they care more than you know. Maybe everyone was too reactive to everything you have been going thru lately. Give each other some space a little while. I’m sure DB & SIL will always be there for you. No matter what. Meanwhile the one person you can rely on is you and your ability to adapt and be creative with how you mane what you need. You always amaze me for that. Sending you positive and calm sense of peace and a comfortable evening ahead. I will say some breath prayers for you all. 🙏🩵😌
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Sunshine, I'm on Medicare, so it may be different for me, but one huge copay gets me across the donut hole and everything is cheaper after that. My copay for Ibrance is 3100, but then it goes down to 702. We sold our house last year which counted as income so I wasn't eligible for the free program. This year I'm applying as soon as we get our taxes done.
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@sunshine99 I don't know if this will help you or not, but Medicare rules for 2024 now have a ceiling on total RX costs per year at (if memory serves me) $3500 per year! Please check into this also.
Yes, yes, yes on all positive and corrected scans!! Hoping covid leaves and every one heals. I watched some of the San Antonio Breast Cancer Conference 2023. The speaker was speaking rather fast and had a lovely but heavy accent, so I didn't catch a lot. However, wonderful news on HER+ patients and on HR+ that are metastatic with new drugs and patient overall survival. Now if only the drugs become more a. available worldwide and b. more affordable.
Monday is my appt. for faslodex injections and I.V. Zometa. I've been off Zometa almost 3 months. My veins are shot. I do not want a port. If the post on Facebook was correct, there's a problem with a certain type of port, so please check what manufacturer it is before becoming too concerned. My reason for not wanting a port, is lesions had adhered to the port I had years ago and removal was complicated. Plus I hope to be on 3 month infusions going forward. That need for a port will change if and when I need I.V. chemo.
I hope everyone is safe and warm and pain free . In your pocket for more good, stable scans.
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@shanagirl that's a beautiful painting and I'm sure your friend will treasure it. I'm working on a painting too. It's hard to get in the creative mode and then have the energy to do it!
@il311@illimae What a cute little ringtail! I like watching explore.org to see all the animals
@micmel hope you are doing better and getting over miserable COVID
@emac877 I hope.you feel better from hospital stay and effusions stay drained.
@mara51506 who posts meals, I hope you got your waffles! Also it's frustrating when family can be such a pain in the ...
@threetree back and forth scan results are confusing and stressful. Hugs
@sunshine99 why do they put impossible prices on medicine? And scans? I think I will go over my deductible just from the pet scan sheez.i hope you get some assistance with the Truqap.
@intolight my go to is pot roast with Yukon gold potatoes. Husband gets tired of leftovers but oh well
Hi to all and wish a good night sleep.
I can't erase wrong links
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I agree with what wren44 and aprillove have posted. I am on Medicare and don't qualify for any aid. Last year for Kisqali I paid $3700 in January and February, then $760 a month for March - December.
This year I paid just under $3700 for January, but that put me through the donut hole and I should pay nothing for the rest of the year.
Wren, check with your insurance. I don't think those $700 payments apply any more.
Best news of all is that in 2025, total out of pocket drug costs are limited to $2000.
Hallelujah!
Eleanora
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Thank you for all the feedback. I’m in the process of getting Medicare and all the supplements but we’re still on DH’s insurance until he retires in April. I’m waiting to hear back on the assistance program.
I’m trying to type this on my phone so it’s a bit cumbersome. I may just have to suck it up and pay the copay.
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Sunshine, I am sorry health care is so pricey for you. In you4 pocket for the copay.
I slept a long time, only woke up for the washroom. Feeling good today. Staying home as I am expecting a delivery of a new electric can opener, my old one died. Looking forward to trying out either the waffle maker or pancake maker, they are smaller than my sandwich maker so that is good too though they are smaller. Might do up some chicken waffles, unsure if they will be sweet or savoury at this point with few lentils inside. Also may need to cook more than one. I am also looking for the red lobster cheddar bay biscuits at Walmart. Seems they carry them at Walmart We will see, might wait until next month when I place my grocery order as I really only need a once a month shop.
I hope everyone has a good weekend and in anyone's pocket who needs me.
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@intolight how many days to get past the faslodex discomfort? The pain keeps moving around (its in lower leg now), my left quad is spasming, and my hip is agony today. Stomach is also rolling a bit. I fear when I have to get this with xgeva same day because that also gives me pains and loose joints for 36 hours.
I did manage to make buckwheat banana pancakes for breakfast but that may have pushed the boat out too far. Was tired of cereal :)
Off to finish watching Valley of the Dolls - With all the drugs lately I joke 'I NEED more DOLLS' when it's time to take another whack of something. Hey, if you can't have humor now then when can you?
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@sondraf The pain from the Faslodex shots varies for me depending on the placement which varies by nurse. Usually it is four days. Sometimes my thighs go numb on the outside and that lingers a couple of weeks, but this time they are just ultra sensitive. I don't seem to have any additional issues when I get it the same time as the Zometa which is every three months.
@mkestrel Thank you for posting the picture of your kitty. I miss my tortoise shell cat. I had to put her down two years ago just before we moved and I still miss her.
@sunshine99 I agree with the others. I am on medicare and am able to qualify for free Verzenio based on income. My oncology office helps with all the paperwork. How are you doing? Is your swallowing improving still?
We are into a second day of snow and it is cold. Fortunately we don't have to go out! Carol, I miss San Diego!!!
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Used the wee pancake maker. Added 2 Tbsp of water, 1 3/4 tbsp of pancake mix and some lentils. Sprayed a bit of cooking spray in, put the pancake mix in and plugged in to heat, I did not think it was fully cooked so I did an extra minute. Bottom is crispy like toast, thinking about fliipping pancake part way through to get the crispy on both sides. For now, it is cooling, spread some butter and will put peanut butter on as a quasi toast. I will post if it is good.
Edited to add, if I want both sides crispy, will flip part way through, it was still like having english muffin with the butter and peanut butter. Really enjoyable and there is tons of stuff I can make in there as well, easily cleaned. It is similar to the sandwich maker but I found it easier to use, pretty good for 17.00. Will try an egg later and want to see how an egg and other stuff does in there as well. The waffle maker will be tried next I think. I did not taste the lentils in there and it was not so sickly sweet as adding syrup to it but I could start adding bits of maple syrup into other things as a seasoning taste. We will see. In the end, knowing how to make a bread product that is also somewhat crispy is a big win to me so yahoo.
Adding my lunch, made an egg with beefless ground, seasoned with parm grated cheese. Cooked one side for maybe 2 mins but flipped for another 90 seconds. Really good, put mayo, garlic parm seasoning and salt, quite enjoyable. I will need to cook more than one griddle ful of food as meals are tiny but I love my new waffle and griddle.
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Sondraf - I can hurt differently each time I get the Faslodex shots. Nurse, timing, and personal body stuff all seem to be at play. Unfortunately, I continue to have all over muscle and joint aches, along with fatigue and headaches between shots. I never become "normal" again. So far I'm getting my Zometa on a different day than the fulvestrant, and I simply cannot imagine getting them on the same day. That is the ultimate goal of the doctor though, to start having them on the same day. He thinks it's being to get all the side effects out of the way at the same time. I would agree if the side effects weren't so bad. I had my first Zometa mid November and got all the horrible chills and body aches. Felt positively awful, but gradually better over 3-4 days. I also think I've had ongoing side affects from it in the form of worse aches, pains, fatigue, lightheadedness, and light sensitivity. Got the second Zometa infusion last Thursday and while I didn't get the chills, I still have had bad body and headaches, along with eye pain and fatigue. Ugh.
Mkestrel - I too love the picture of your cat, and it makes me wish I had a pet, but ...
Sunshine - I too am on Medicare and get Verzenio at no cost. The "Patient Assistance" person at my clinic does all the paperwork for me and then I just wait for the speciality pharmacy to call to arrange the delivery. Last June when I started this I was told that the income threshold was up in the $70,000+ range, so many qualify when they might not expect to. They had told me that the actual cost of the drug out of pocket would be $13,000 a month! They said that with Medicare and my supplement my co-pay would still be $3,000 a month! I'm definitely glad I qualified for the program!
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Sunshine99 - I'm not yet on Medicare but on my employers plan so it might be different. But when I was on Verzenio and then the Piqray I had copays on each of 3k to 4k days. I ended up getting a copay card after the person at my cancer clinic helped with financial paperwork and I was hooked up with the number for the copay assistance. If they are looking into financial assistance already for you that's great. The program I ended up qualifying for for the Piqray was through Novartis itself. I know Truquap is fairly new so sometimes the drug makers have financial assistance through their own programs too. How it worked for me is I got the first 15K covered by Novartis and then my insurance paid a certain paid a certain percentage and a copay card covered the rest.
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Thanks ladies, that is helpful to know. I did do the floor bike for 15 minutes (broken up) today during my good time and that seems to have helped somewhat, but let's see how my bad time goes in the morning before I judge it a success!
@mara51506 it sounds like you are doing a really westernized version of dosa, or Indian femented lentil/rice crepes. One of those things best left to the experts, they are so good hot and crispy and then filled just like you are doing. I just love reading about all your experiments :)
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Good evening all. I loved the pic of the tortise pussycat. I had rescued Penney from under a trailer years ago that was the same color. She was a Hemingway cat, extra toes front and rear and so lovable. Miss her. Looks like a nor'easter is brewing for early next week. As of tonight, it's projected we will be under heightened tornado risk Monday. Rather early in the year for us. This is our 2nd advisory in 2 weeks. My appt. with cancer clinic is Monday. Quadruple whammy, Zometa, Foslodex, Ibrance and blood test, all on Monday. Throw in a risk for a tornado, oh why not.
Well with all the fussing over qualifying for Ibrance, the shipment never arrived. I called Pfizer, they do not have office hours on weekends. I'm due to start next cycle tomorrow. I have 3 pills stashed away from my last trip to the hospital for colitis. Wasn't allowed to take them at the time. So that buys me a few more days.
Worked on income tax, yuck. At least we get a small refund. I saw a congresswoman was proposing to remove federal income tax from seniors and up the limit on wage earners. Here's hoping that would go thru, though some states still tax Soc. Security.
Hope everyone is warm and pain free and enjoys Sunday. In pockets for all your needs.
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@mkestrel Beautiful pic of you kitty!
sunshine Sheesh always something with insurance crap etc. Hope the price drops for you as other ladies above, fingers crossed.
Irish Geez now the meds didn't arrive! All this stress that we all deal with from time to time with meds, insurance is unnecessary. I hope it magically appears tomorrow and your weather stays calm.
sondraf Glad to hear you were able to ride the bike. That's ok if it's broken up, whatever your body can handle is success.
Mel Hope you and DH are feeling much better this week!
Mara Those Red Lobster cheddar biscuits are delish and simple to make! My son loves them and I do treat myself now and again to one.
Well of course it's hard to get a week without something going on as you all know lol. Think I will have to call the dentist this week trying to decide whether I have a sinus issue going on or a tooth,ugh! Pain off and on plus sensitivity the last couple days..we'll see. Treatment this week and bloodwork so seems like an interesting week ahead.
Hi to all here hope you have a peaceful day. To all who watch the Superbowl enjoy, I'm a little neutral this year so GO CHIEFS and GO NINERS!
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Threetree, I'm so happy for your final and actual results! What an emotional shitshow you've had to go through, my goodness.
Cookie, hurrah for stable CT!!
Intolight, hurrah for stable scans!!
Shanagirl, that painting is just wonderful. You are so talented.
Mel, hope you're continuing to feel better every day from that covid beast.
Emac, thinking of you and sending love, hope you are still home and feeling okay.
Sunshine, that copay is bananas, hoping you can get help from the drug company.
Two weeks tomorrow since my spine surgery, and recovery is slow but is happening. Ordered new jigsaw puzzles, which my Mum loves putting together, and also the lego set of the house from the movie Up, to keep us occupied. Sitting for too long isn't great, so I'm constantly getting up, walking around the house, laying flat in bed for a bit, drinking water, peeing... it's quite the adventure, lol!
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I counted up my remaining pills last night and I have enough for 13 weeks. That extra bottle that I was sent from another pharmacy should help.
Irish, I wish I could send you my unused Ibrance. My MO said I could bring in my unopened packages and leave it with them. The Arimidex is opened so I'll just have to dump it in the pharmacy bin. So sad to see these expensive drugs basically go into the trash.
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mkestrel, I have been debating calling the dentist too. Sometimes I get tooth pain that moves around a bit and when I leave it alone, it goes away. But this time it returns to the same tooth so I guess I have to call. I have a cleaning scheduled for next month but I don't think I should wait.
sf-cakes, yeah on recovering. Sounds like you are doing a great job.
Sunshine, you are right it is sad to have to return extra meds. I have a two months extra of Verzenio, but I am still on it so I am hanging on to it in case something happens where I don't get it on time. I took back two months of Ibrance when I changed. It is hard to pay so much only to not use it.
We got 5 inches of snow this last storm. It looks like we get a reprieve until the 24th, then it is back. Of course it could always change. I hope you all in the north east weather this storm ok. Stay warm everyone.
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Staying in bed most of the day due to high winds and freezing temps outside. I’ll only crawl out of my electric blanket later to make lasagna, which I’ve been wanting for a long time. Not much else happening right now.
49th birthday next weekend
Scans in 3 weeks
Then, hopefully spring arrives with no more surprise snow days.
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Sfcakes -. Thanks for updating us on your recovery. It's so nice to know it's going ok. Better slow than and well than with complications. With all the west coast rain we're having those jigsaw puzzles sound pretty good!
And yes my scan debacle was really an emotional nightmare. For my friend too, and even must have been for the ER doctor, as he really believed what he was telling me at the time and expressed deep sympathy. It couldn't have been easy for him either.
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Threetree-I'm still blown away by the thought that the ER doctor somehow thought it was his responsibility to give you the results of a scan. Did you go in for an emergency? I would think he would know to simply refer you to your MO to go over the results. Seems like quite a bit of hubris on his part and I'm sorry for the unnecessary stress he put you through.
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Cookie, yes, I am thinking about the redlobster biscuits, would have to go to Walmart, only place I have seen them. My Amazon has them but they are overpriced. I am sorry about your teeth, nerve pain is the worst. In your pocket for pain resolution soon.
Am thinking about breakfast, I heated a frozen english muffin at 350, letting it cool now, might take some black beans and lentils to use as the spread and put garlic and cheese on the muffin, would be quite good. I did have to get a new can opener and it works well for me which is good. Later I will do something with my eggs. Need to expand meals as the mini griddle and waffle iron are great, need to make more stuff. They are both 350 watts so could be used at the same time, we will see if that would work. Breville oven heating up now. I totally enjoyed the english muffin with garlic spread, chopped beans and lentils made into a spread and cheese added to the top.
Watching a bunch of budget cooking videos on youtube, one of my favourite channels is atomic shrimp who does a ton of budget videos like spening 1.00 for all meals, he forages and comes up with interesting recipes.
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Chicagoan - Thanks for your comment and concern. Actually I think it's standard protocol at my ER for the ER doctors to tell you what scans say, since they order them and are trying to figure out and let you know what's wrong. It was the ER doctors who ordered and did all the scans that said I was now metastatic, about a year ago. They came in and told me. It's just that they got it right that time. They of course then called their contact at the oncology clinic and told them what they had found. This last time, the doctor also said that the ER would be contacting the oncology clinic to tell them what they found. When I did see my oncologist a few days later, not only was it his understanding that the scans showed stability, but he also says the ER doctor's final note didn't describe the spread and new fracture he told me about that evening I was there. Something happened between the time he visited me in my room and the time he posted his final notes. Maybe he got new info or re-read something? I had gone to the ER for chest pain and fatigue. When I talked to my oncologist a few days later about what had happened, he didn't seem to want to get into it too deeply. Seemed to think that as long as we were all now good with things being stable at that point, we could be done with it. He did suggest that sometimes these things do happen, and a couple of others here have mentioned it too. Maybe it's "just" a potential hazard that comes with the territory? Hopefully a real one off when it happens to anybody!
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That’s why I hate scans. Do they really understand our disease? Stable is great. But when you’re feeling badly. Stable doesn’t always feel like we feel. They tell me I’m stable and my spine hurts enough for all of us. No to mention the neuropathy in my hands and feet , breathing on one lung, my lymphadeama in my left arm and thoracic outlet issues with my right shoulder and arm. Scaring from my port surgery. And liver resection. To me I don’t think I’ll ever feel what I call stable again.
I tested negative for Covid finally. But I have a terrible cold and cough that has kept me down. I feel so sick. This has been hellish. I hope none of you ladies get it. It’s brutal. I’ve been in bed for more than two weeks with this on top of cancer. I just want to be better. I want to be normal again. I miss my old life. My old self. I know we all do. Getting sick like this makes me realize. I am one bad infection from the hospital with this disease. I hate you cancer. Leave me alone. And the people here I care about too. Enough battling illnesses for us all. Hugs to you strong ladies. Just reading what we go through makes me so mad. What a shit ass hand we were all dealt.
I miss my mother a great deal. Waves of sadness finds me all during times of the day. I miss her voice and her sweet words. “ you gotta be careful honey with this Covid,” she’d say. I can hear it in my ears she would tell me how bad I sounded and to keep a close eye on my lung. I want her back so badly. This has been a terrible year so far already. I want to go back when she’s alive and I can tell her how much I love her. Sometimes life just sucks. My closest person in my life. Just gone. Just gone….
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Hi everyone. We had a beautiful day, 80! Turned the pool heater on and everyone went swimming. DGD is now 9 yrs old and a little fishie. I started provigil today and it kicked in right away. I found the energy to swim and even do housework. Enjoyed the Super Bowl Game with family and the dogs took over the sofa. lol An unknown breed of a woodpecker showed up on the Crepe Myrtle tree today. A fat robin also enjoyed the same tree. Of course the squirrels were busy at the squirrel-proof feeders. Smart critters.
Dearest @micmel The pain in your life is so sad and your heart is so beautiful. I wish I could find a way to erase that pain and bring you some joy. Only time can lessen your loss. When your Mom left this earth, she left behind a wonderful, caring daughter. The memory of her voice will never fade away. It will be a comfort to you till you meet again. @sf-cakes Two weeks of healing and you sound wonderful. I admire your courage to have surgery of such a great extent. I'm so glad you have your Mom to visit with you and care for you. May you heal completely and get back to operas and shows. @threetree Our ER is set up like yours' to share the info from the ER Doctor. That's how I found out I was metastatic. It was not handled in a private, delicate matter. I eventually forgave him as he was extremely busy. I can't hold a grudge very long and it's almost a year. I'm sorry you were put in that position of lousy, incorrect news. He must have read someone else's chart is the only thing I could gather. I hope it never happens again to any of us.
In pockets for all your needs and have a wonderful Monday. Watch out for snow and heavy rain and wind. Someone is gonna hit the jackpot on feet of snow in the northeast.
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Just checking in— I read here every day.
Mel- I GET IT. I too am "stable", thank God. But I don't feel "stable". I appreciate Lynparza, as it is doing well against the cancer. I had a hiccup with the re-enrollment of the financial aid for the drug, but it got resolved. And I am thankful I can continue the med thru 2024, as long as it continues to work. BUT…. even with 2 dose lowerings it still makes me feel nauseous, more at some times than others. A friend said "how long has this been going on" when I mentioned my nausea to her. I told her 2 years, as long as I have been on Lynparza. Of course, she doesn't understand that is what comes with cancer treatment. And my side effects are nothing compared to some— I have heard of others on other treatments that have to wear diapers because the diarrhea comes out of nowhere with no warning. And, yes, I too have neuropathy, Port scar, and mastectomy scar. And a hip that needs replaced, but with cancer it is considered a more risky surgery.
Anywho, I keep plugging along. That is all we can do. I should comment on each of your posts, but I am sorry I can't. But I do care about all of you, and celebrate the good news, and hurt to hear of struggles.
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Irish - So nice to hear about you having such a wonderful day! More power to you and yours. Thanks too for your thoughts about the ER experience. Like you did, I can forgive this man. He's 75 and apparently used to be the chief of staff at that hospital when it was a nice neighborhood/community hospital and before the local university took it over(I looked him up). His specialty has always been ER doctoring. He's also very kind. I don't know if his age played a role, or if it was a " Sunday thing" or just a bad day, but what he saw and told me was new, was actually the stuff from last year that has been considered stable now for a good six months or more. I was so stunned by what he said to me, that it didn't even hit me that he was talking about the old stuff until I'd gotten home and started "processing" the whole thing and rereading the radiologist report. I would have brought it up with him if I'd been in my own normal mind when he hit me with the "new" findings.
Wishing you many more days like yesterday, with great weather, the family life, and some much needed energy! You are still very lucky in so many ways.
Mel - So much of what you said could have come from my own mind and mouth. So tired of it all and like you, wish for the old life and normalcy. This treatment and drug business can truly seem like nothing but prolonged torture at times - especially when life's "normal" downs like illness and the death of a deeply loved one also get you. Breathe deeply, take it all one minute, hour, and day at a time and be overly kind to yourself. We are all pulling for you! Hugs!
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Got my routine CT scan this morning, paratransit picking me up for the trip around 9am. No scanxiety here. Will find out results when I see MO on Feb 28th.
I will be hungry post scan so may allow an UBER or regular cab home, we will see, other than that not much to go on after that. Only other thing is going to be figuring out what I want to eat when I get home.
Only other appointment is the OT appt, got to get active with the bed exercises and regular exercise as well. Get real with the mall walking and treadmill walking too. When it gets a bit warmer, start walking outdoors more often etc.
Just got home, took the paratransit both ways, pretty easy trips. Love being lifted on the ramp, drivers are so nice. No issues, held my breath and blew out slowly to avoid the usual nausea from injected contrast but they were nice there too. Was only at the hospital 90 minutes. Ordered McDonalds, just under the wire for the breakfast as I am starving. Will make a meal heavy on beans and lentils. Also have new earbuds coming in the mail and a new seasoning as well coming from amazon, garlic alfredo, will figure a way to use it in meals.
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Mara, best of luck with your scan!
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Thank you!
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