My Husband, My Life, My Love, My Family, My Cancer
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Thanks for sharing your experience with Verzenio. If that is the choice, I will refuse to start at the highest level, as that is where I was started with Kisqali initially and the pain was horrific. Even after a reduction to 400 mg, it was a 3-4 month adjustment period. My MO is dismissive of the impact of SEs, but I'm a lot more knowledgeable now (much of that due to this forum) than I was when I first reached Stage IV in 2022!
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@mkestrel Those are very beautiful pictures of the park you hiked in.
@candy-678 Still in your pockets as you get more info in the PETscan and such.
I just woke up, about to make breakfast to eat a bit later. Also doing some laundry to start with, when I get home I will do other chores.
Wanting a nutritionally dense meal so going to add beans and lentils with beefless ground and cheese. I replaced beef with some left over elbow pasta from a pack of Kraft Dinner. Will add 1/2 cut beans, 1/2 cup lentils, a spoonful of queso, the tostitos variety, give a good stir in air fryer. I always use high temp which is 392 F on my wee air fryer. It should taste quite good, not sure on seasonings yet. Probably a mix of sour cream and salt for now. Waiting on a new sour cream seasoning and a garlic and butter seasoning. Says it is for streak BUT, cannot see a reason not to add some extra taste to a meal without an over abundance of fat. I will post later on. I am also looking into meals that can incorporate microwave popcorn, extra fiber there, I will see.
EDIT The beans and lentils were delicious and I used some of the elbow macaroni to fill it out there was also beefless ground in there. I could not finish it so will eat later on. Used proper tostitos queso, added sour cream as well.
I will post MRI results when get home, not expecting too much but on guard anyway.
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Cross- posting. I put on the Liver Met Thread too:
I have had liver progression with my latest scan and am looking at third line therapy options.
Any ideas?
I have been on first line CDK 4/6, and second line PARP for a BRCA mutation. Now I am considering what is next. I want to stay on orals for as long as possible.
Throw out some next options…
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@candy-678 I have had bone and liver mets for ten years since original dx and on orals the entire time, but I do not have the BRCA mutation. I started IV chemo in January since I have gone through recommended orals for my specific mutations, etc. My bone mets are under control (are inactive with no new ones) and so far on chemo my liver mets are shrinking. I have requested maintaining the best QOL possible so we are not being overly aggressive. I don't remember your age but I am 73 and am happy for my last ten years praying for ten more.
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@wren44 When I was on AC-T chemo, I had a cough and then discovered I'd fractured my 4th rib. They were worried about it for a little while, but it turned out to be a stress fracture. I had no idea I had fractured a rib and was doing Pilates twice a week! Some of these meds make for weak bones.
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Brain looks clear of any necrosis, surgery removed all that there was, When first talking to nurse who took me in, I did tell her I resented my brain having necrosis more than fear at this point. When my doctor came in, she said that my brain is behaving itself. No new mets or necrotic tissue. She did tell me we keep an eye every 3 months with an MRI, that is fine. I will stop resenting and just go day by day since there never was any pain from the surgery since the 2 weeks post op. It has been long enough, cannot see my scar which is covered by my own hair.
Will get CT scan results in a doctor appoint, I have been NED for 11 years from chin down so will cross fingers will be same result. Those appointments will be on April 1st. That is fine.
Did have a craving for Mcdonalds, don't have the same craving for the almost 30 bucks for delivery. I will figure out dinner, got left overs from earlier today but will most likely add some cheese then have a yogurt and banana smoothie at dessert. Thinking could add some doritos to the left overs and add some more beans, heat up in the air fryer I think.
EDIT put some extra cheese, beefless ground and lentils, added it to the left over from this morning. Put a bunch of crunched up doritos in there, heating up most of the 15 mins and stirring every few minutes, I am sure it will taste good and be more left overs possibly. I will post taste results once I have eaten. Need to check fridge thoroughly as well since it is easy to miss stuff.
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@mara51506 Happy to hear your brain is behaving! Fingers crossed that the rest will look good as well🤞
@candy-678 Thinking of you as you weigh out all your options. Hope you get some good feedback from the liver page.
Was a beautiful day in the 70's and sunny today! Enjoyed most of the day outside and got a nice walk in too. Hope everyone has a peaceful night.
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Hi ladies.
@candy-678 i believe @micmel had a great deal of liver treatments including ablation.
Waving hello and reading along. Haven’t been able to post much. my GD 26 had a stroke and heart is failing. She has muscular dystrophy.
Take care all
Tanya
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@tanya_djamila I am so sorry to hear about your GD. May she be at peace and free from pain.
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@candy-678 im sorry about your progression . However , I want to share that there is a woman that used to post on bco years ago named Ann Silberman. At one point in 2015 she had 1 liver met., had sbrt and has maintained NEAD / clear scans since which is pretty remarkable. I think she became stage IV in 2009? She is also quite thin and petite. She has been an advocate for Mets patients and also has written articles, a blog and posts about it on fb so I don't feel like I'm invading her privacy by mentioning her name. Her blog has not been updated for a while but her fb page is current . Her tag line was " but doctor, I hate pink " or something like. From what I know of you, you are smart, calm and analytical and will research all options, don't dismiss sbrt or Y90 based on fear due to others experiences. Some tumor met locations may be more painful than other to zap and id hope the radiation oncologist who does these will be able to assess your case . I don't post often but wanted to reach out and share this in case it helps. I can't remember her bco avatar/ name . Does anyone else remember her ?
@tanya, I'm so sorry to hear about your granddaughter. May her memory be a blessing .I don't post on here often but admire all of you and your closeness / ability to keep up with everyone:) Mel has created a wondered community but all of yall keep it going .
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Tanya - so very sorry to hear about your GD. May she find comfort and peace (and may the same be true for her family).
Mara - so glad to read your brain is behaving! Hope it stays that way.
Candy - continued pocket duty for you. And for all those in need.
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Healing thoughts for your GD and you. So sorry for this difficult experience.
Thanks for sharing your experience. Hope Verzenio is a long run for you!
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@tanya_djamila I am sorry about your GD and what she is dealing with. I am in both of your pockets.
@goldensrbest Thank you, it would be preferable to have good scans for sure not showing anymore dead tissue or mets. I would be upset if my brain fizzled out if I am being honest. Body has been great but brain not so much thanks to the blood brain barrier, if only drugs could have gone through. I am happy with my results anyway. MRI happening every three months.
I have accomplished nothing so far, a hand wash of a couple of my head scarves that I wear at night to cover the bald patches of my head. I do have a fair amount of my own hair which is the same colour as the roots of my blond wig I wear the most. I just hang them over the shower rod in the bathroom. I do spin them though since it makes them dry faster, will be starting laundry. Working through my pantry meal wise. This may involve canned chicken or another veggie to fry up. Also wondering if I could fry individual eggs in the air fryer but use the mini pot pie aluminum containers to make sure egg stays the proper shape. I am wanting some eggs with a runny yolk to dip an english muffin in. Used to love doing that. Also want to try something I saw on one of my facebook channels and that.
For now, am heating up a can of bushes bean fiesta, mild chipotle, added some lentils to the mix, chips as well, some of the spicy barbecue brand from walmart and some of the zesty cheese tortillas. Put the shredded cheese in there and straight sour cream. Will stir every few minutes to combine flavours. Not sure will need anything else. Should be creamy and cheesy. It will definitely be a multiple meal situation as well. I am good with that situation as it makes side dishes more approachable. Will post about if meal was good and later meals if they deserve to be posted.
EDIT I did have the above meal, was really good and filling. Only thing different for future is put chips in after other stuff already heated up. In future, am thinking about getting some pillsbury rolls to wrap up a spoonful of this kind of stuff, got many options I could do. Just need to choose which variety.
I hope all have a good day, in pockets for everyone.
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@tanya_djamila I’m so sorry to hear this, prayers up for your GD and your family.❌⭕️
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@tanya_djamila My heart goes out to your GD and whole family. I am so very sorry. I will keep your family in my prayers.
@mara51506 Well Mara what wonderful news. I just bet the rest of your testing will be great, also.
@candy-678 Wish I had some knowledge of liver abalation to share. I have done a lot of reading here on b.c.o. and delved into prior or current posters regarding liver mets. I believe the general consensus was good. Praying that whatever decision you make, you find the answer…
@mkestrel The park is so beautiful. I imagine it soothes your soul as you breathe in the air.
Please know I am in your pockets for all, especially those that I have not mentioned your name. All of my sweet friends, you are in my heart and prayers.
Leg cramps. Oh boy. Lessons on leg cramps. Hydrate. Eat a banana asap . Check your potassium. DH says bite your lower lip but I thought it was upper. Something to do with a nerve that blocks the pain.
It's been a bit busy here as we bought seeds and planted in plastic starters lots of types of flowers. Transplanted hydrangeas to solid, larger pots from started ups. I'm thrilled that the hydrangea I planted last year survived and is pushing up thru the mulch. It was a half price deal as it didn't look so good. DH finally found what I think is a great bird feeder. It has two tubes that are plastic to protect the small seeds and two tubes that are mesh for the sunflower seed. Otherwise the rain ruins the seed as it turns sour quickly. Our bouganveilla was huge, beautiful, almost perfect and I suspect perfectly dead. DH has been cutting back branches and the garbage men didn't take them again this week. He puts a note on the thorny buggers and we tipped the guys $40 to take them. Guess they want another $40 for this weeks. Still have more to go. Driving around we see so many dead gorgeous and some expensive flora. That two day deep freeze did a great deal of damage to the flora. Gale force winds tomorrow and we didn't know about it till an hour ago. So hope we don't have to batten down the hatches.
Be safe, sleep well and may the pain subside and give you a wonderful spring weekend.
Laurel
Note: Edited post and I apologize to Cookie. Candy I am in your corner hoping and praying you find the right treatment and make a good recovery.
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It’s been a few days offline here and reading through to catch up since last weekend. I’m thinking of you all. I had been so sick with the cough last weekend my pulmonologist fit me in at 12 on Tuesday before. my chemo follow-up and treatment appointment at 1:00. He put me on methylprednisone pak, a 4 day pak of antibiotic and cough medicine. Iv’e been feeling a bit better but waking up every night in profuse sweats, and peeing like a racehorse in the middle of of the night. The sweats are making me wake up freezing in damp nightgowns, sheets & pillow, so changing into something warm a dry is my usual routine at night. I’m not sure why the night sweats
@candy-678 you are in my heart . Progression and new treatment is a struggle to deal with . In your pocket
@tanya_djamila I’m so very saddened to learn of your dear Granddaughter. I will light a candle for you and your family as you deal with this terrible loss. Healing Prayers will go out to you when I light the candle . 🙏
@threetree thinking of your constant tiredness and totally relate, I hope treatment is going well after your progression.🩵🌷
@mkestrel As always I’m loving your beautiful pictures and enjoying them. Stay hydrated, also a banana with two tablespoons of chia seeds & milk in a smoothie….try that. Clove tea is very comforting and relaxes you at night for sleep a teaspoon of whole cloves in a 2 cups of boiling water about 10 minutes let it sit in the pot for an hour or so before going to bed. The healing oils in the cloves will color the water as they steep and you can add a little raw honey if it’s too bitter.
@aprilgirl1 hi there, thanks for stopping in and your kind words to this group;🥰
Saying hi and thinking of all here dealing with progression and the struggles that go along with it. @goldensrbest @chicagoan @cookie54 I love your cheerful supporting words to everyone😊
@intolight @eleanora @orknitter @rlschaller @runor @mara51506 @norah2024 @xsuzx @micmel and I know there are many more of you but I need to take a break right now. love you all. have a peaceful painfree evening,💖
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OMFG, if it was not for bad luck I would not have much luck at all. I was in the kitchen when the outlet in the kitchen sparked and all power in the apartment went out. Needless to say not thrilled nothing works, did flip breaker and reported to the property manager. They better come soon. For now, using outlet in hall to keep things charged like computer and phone chargers. I was not running anything at all at that point and only run one thing at a time at this point. For now, will possibly put food outside since it is around freezing. Use the hallway plug to keep computer going and I can charge my chargers out there. Not sure what I am going to eat because cannot cook anything at this point. Oh well. Wait til fast food opens up.
Only good thing is the hip fans I got one year have an excellent flashlight on them.
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@mara51506 Oh nooooo, I hope your power issues are resolved quickly! Maybe it's an easy fix like a breaker?? Fingers and toes crossed for you!
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@shanagirl Oh no I was thinking of you yesterday when I popped on here …so sorry you have had a crappy week!! Sounds like you have a fabulous Pulmonary doc that cares. I sure hope each day you are feeling better, it sounds like it's been rough for sure. Hope you're enjoying the Jersey sunshine through your windows and sipping your tea💕
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How are you? It’s been a long time since I last heard from you. I guess that might be because you were dealing with a cough. I hope you’re feeling better now and that everything has cleared up.
As for the night sweats, this actually happened to me when I had pneumonia about a month ago. Whenever a severe coughing episode started, I knew my temperature had gone up—and it usually had. I would take a fever reducer, and then the heavy sweating would begin. My clothes, pillow, and even my underwear would get completely soaked, and I’d have to change them. The sweating would continue for quite a while afterward.
I’m not sure what causes this sweating either.
I hope you’ve fully recovered now and have been able to return to your treatment again.
Thank you for always checking on us.
Hugs 🤗
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Mara - fingers crossed you get a swift response from the property manager!
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My brother came over, it was as stupid as a flipped breaker although not sure what caused the spark. I was unable to flip the bottom circuit breaker switch which was what was causing the outage. I need better cord set up skills which will start with using a grounded power surge protection power bar to do kitchen gadgets like magic bullet, chopper and my air fryer. Microwave and breville also share the plug, they are never done together either. Oh well, stuff happened, bro reset the bottom circuit breaker and it works, setting up a safe system taking into account the lack of proper outlets, need for extension cords and power strips and power management, washers use 600 W for both, washing or drying. No using the air fryer whilst laundry is going on stuff like that.
So looked up power consumption, Air fryer is 900 W, 600 W if running both washers or spin dryer and microwave 700 W. Basically, if washing stuff, no air fryer, microwave or Breville on the go. One tool at a time and can also choose to use the burners to heat up food. Should avoid the same issue again. My dryer in the bedroom is OK to use because it is another part of the wiring, not connected with the kitchen stuff.
I am not making breakfast, ordered food from the burger joint, not mcdonalds. Just a different burger and a little less expensive. Forgot to order the cinnamon donuts I enjoy but that is OK. I put lots of toppings on that are good and got some onion rings, yummy. A pepsi as well.
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Hello ladies
Thanks for all of the well wishes, kind words and prayers. I really appreciate the support.
@mara51506 wow electrical issues are terrible and scary. Thank goodness your brother was able to figure it out and now you can use appliances separately.
@irishlove i had so many plans to go outside and help my freezer burned plants. I do detect new growth in a lot of them. They look worse than they actually are. My neighbor has a bougainvillea that climbs over our fence. The thorns are murderous. I’ll cut them and leave them for the clean up guy. I always cut myself when I try to gather them so…
@shanagirl i hope your night sweats and coughing subside. Hopefully the prednisone and cough medicine will soon make you feel better.
Waving hello at all the beautiful ladies. I hope your day goes well. Take care.
Tanya
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@tanya_djamila Yes everything is working, had to toss one of the long cords because the end prongs were in the sparking area and were black. Took the long cord I bought and am using that for the breville and microwave. Daisy chained 3 power bars to run the washers, once done laundry, they can be unplugged. They are low watt appliances and they are fine. Dryer is in bedroom and that is on a different circuit. I did not feel like buying another long cord. I am fine with doing that as well as they will not stay that way, will be unplugged when not needed. No cooking on the same same power line. If desperately needing a cook, use the burner on the stove
My appliances are sitting back on the counter. finding that I do not really need to keep them plugged in either.
Laundry will be done first, break down some boxes to put in the recycle on Tues night, get dishes done. I will then decide what food to make. Needs to be nutritious. Will post what I have later.
EDIT 1 I took a frozen beef, tomato and macaroni meal, added lots of beans and a butter and garlic seasoning and the sour cream and onion dry seasoning, heated through for 5 mins 30 seconds on high, put in a bowl and mixed all together with plain mayo. There were also a few bits of an earlier meal which was heavily seasoned as well, it was really good, filling too so put about 1/2 in the fridge for another meal later.
EDIT 2 The daisy chain thing to the laundry is good, in case anyone was wondering, there is no outlet in the bathroom to use instead which is why this is a thing. All power strips are grounded and do protect agains power surges, should not set off the circuit breaker but simply shut themselves off.
Hope all have a great day and in pockets for all.
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Mara your electricity bill will probably be lower keeping every unplugged.
have a good day allTanya
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@shanagirl What an ordeal! Are you feeling better?
@mara51506 Is your building still going to come and look at the outlet? It might need replacement/upgrading if the prongs were charred.
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Not at this point. @tanya_djamila My rent includes any electric used, once laundry is done, all power bars not in use are just turned off, including the one used for the microwave and breville. No one coming as of now, I honestly just cancelled them. If I think it is needed, will ask for a replacement, there are no charred bits in the original outlet. I checked with my flashlight hip fan.
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Well my goodness, property manager texted just today to come tomorrow with an electrician. I would have lost all fridge and freezer food if DB did not come on sunday and flip the breaker. I said they can come will remove the washer stuff.I do wish there were more outlets in the house personally. Better to make sure no permanent damage to the outlet in kitchen, I don't see any but a professional is better to hear from.
I am in the middle of dinner prep. Just having a ramen, using the package seasoning along with the garlic and butter I am addicted to with sour cream and onion. I also put a can of chicken in as well and once it is all finished, put all into a bowl with some mayo to make it creamy, should be good. Got it simmering in a pot on the stove.
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@mara51506 Glad to hear it was only the breaker and DB was able to help out. Yup glad you didn't need to wait for PM that would have really been a hassle with all your food! Good idea to make sure everything is safe , electrical issues can be scary.
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