My Husband, My Life, My Love, My Family, My Cancer
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Rosie,
I am praying that your current chemo combo will show good results. However, if that’s not the case, then hoping you qualify for the clinical trial. You are a special sister here, and I hope you feel the love and support.
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Good morning,
I’m feeling a bit better each day and nausea has mostly faded. Today we’re setting up my little temporary greenhouse and tomorrow its off to my favorite place out here, BalmoreahState Park where I’ll be swimming in the worlds largest spring fed pool 😃
Mara, I think you should post what food stuff you like. I’m I’m feeling icky when reading, I just skip past those parts.
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Thank you Mae, so glad you are feeling better and enjoy your green house and swim.
I have not got much going on today, making money from a slot game that pays per level which is good, no cost to me. Laundry, housework. Was looking at getting a rebounder with a handle so I could go super fast without killing my feet but am ruling that out until I start using the treadmill at least once a day.
Breakfast is weird but I am cooking 1/4 cup of pasta in water seasoned with onion, garlic and taco seasoning. Will take that out when done and then take a pan and combine 1 egg, 1/4 pre baked beans, I like the beans crunchy now and the cooked pasta with 1/4 cup of beefless ground. The calories are not huge but combines everything I am wanting. Will add queso and bit of mayo to offset spicy. Should be good.
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Mae- Glad you are feeling better!! Enjoy your weekend.
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Mara, I can recommend a rebounder, [mine doesnt have a handle, but I use it next to a work surface .] When my neuropathy is playing up I go on the rebounder rather than walk and it is easier on the knees! Keep posting your recipes.
Mae enjoy your swimming trip ,glad to hear you are getting better.
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I have seen a few on Amazon and I do need a handle as there is no desk to hang onto but thank you for offering a suggestion. Still thinking of going ahead because I could definitely go to town with the marching steps to keep lifting strength at 100 but I will use a handled one.
I will post recipes if they are different than what I normally eat. When I cannot think of a meal I want, I will use 3 tablespoons of peanut butter measured out and that will suffice until dinner.
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Mae,
So glad that you are feeling better and getting back to enjoying the move to your new place.
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Mae- happy to hear you are feeling better. Enjoy your swim in the spring water pool. Sounds so refreshing 😌
Mara- keep posting your meal ideas 💡 If I'm feeling icky I also skim over them.
Moth- continually in my thoughts and prayers. You have a bunch of wonderful ladies circling you with love ❤️
Spent the day doing laundry and putting the solar lights around the house. Waiting for our new patio to go in so I'll wait for that before I do that area. We've had some pretty chilly nights here so I've been covering up the flower containers. Tomorrow we have special son out but it's supposed to rain so will come up with indoor activities. Probably watch some movies.
On Monday I have my CT scan so it's always an anxious time. Won't find out results for a few days so may need help in my pockets!
Saying hello to everyone 😊
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Living, we can do multiday pockets for you no problem.
Next on the cooking front is to take a Michelina's beef stroganoff and make it more nutritious with beans, more mushrooms and beefless ground with spinach, we'll see. Once I figure it out, will post it. I also have a knorr pasta kit so would just strain out the dry seasoning part, save it and cook the pasta. I am also into the ranch dressing and mayo mixed together. It is wonderful.
I also must say, the friend caller (wellness check) is a really nice lady. I can tell she is older, she told me she has some mental and physical disability but she seems very active when describing her day, I just like her a lot. Very pleasant person to talk to as well. Fills the chatting gap, no complaints so far.
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Pocket duty for week of June 5-
Rosie- CT, MO, Trial Team Monday
Dutchiris- MO Monday
Livingivlife- CT Monday
Tanya- Scans Tuesday
Emac- MO Thursday
Anyone else?
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Thank you for keeping us straight on the pocket duty Candy, that is so kind of you to do.
Not much happening here. Waiting for some extra storage cards for a spare phone that runs games for some pennies. Had to totally geek out yesterday to fix intermittent internet drops. I got it fixed by adding router and limiting speed of each device. Working so far. I do love fixing technical issues on my laptops and finding uses for old devices. I would say if I had any real talent, it is related to computers and solving issues that way.
Nice day so housework, laundry started already. Will be putting out garbage as well. Going to use the bin out back and if it is not raining, do up some recycling to place out front this evening since garbage collection is tomorrow. I added a hook to the inside door of the front closet and will hang a bag that keeps certain recyclables, vinegar bottles etc. I reuse some for various food or soap storage as well. Baking up more wash soda now.
Today, I am going to transform my Michelina's into a couple of meals. Other ingredients besides extra pasta could use eggs and beans, beefless ground etc. We will see how it works out today. Keep what I initially make and then add ingredients from there.
Mae, hope you are continuing to improve and Moth, still thinking about you as well and how you are doing. I am in everyone's pocket whether you need me or not. A magic pocket with whatever food item people want.
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I've posted here in the past. I don't know if anyone remembers me. I quietly hang out here in the livingroom everyday. My scans from last Thursday show progression in my bones (presently bone only still). I am being treated as triple negative after a receptor switch in mets to ovaries. I say bone only because ovaries were removed. I am pretty certain I've have enough progression this time to warrant the treatment change. If Xeloda has failed my next textmeant is IV chemo. I find out tomorrow afternoon.
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Hi Dutchiris. I remember you. Good to see you post. I remember you changed to ER-, as I did too. But are you still PR+? I was thinking you were PR+. I just listened to a webinar from LBBC (Living Beyond Breast Cancer) that a speaker said that if we are ER+ or PR+ of at least 1% then we are considered hormone receptor positive still and hormonals may work. ??!! Before you go to IV chemo can you ask your MO about this and see if they can try oral meds before changing to IV chemo. I am ER-/PR+/HER2- and hope I can still use hormonals, or at least oral meds, after Lyparza stops working (I have been on Lynparza, a PARP, for 10 months now). This is so confusing. Also, we can have areas that are still hormone driven, along with some that are driven by another pathway. Hope to see you post more often.
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dutchiris, I remember you, too. I'm sorry you're seeing progression in your bones. I hope you're not in too much pain.
Carol
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Good afternoon living room!
Dutch Chris I remember you. Please ask the question Candy shared she is knowledgeable about this disease treatment and progression.
Mara your day sounds super productive.
Moth I read your update on your blog. Your toe nail polish color is beautiful. I hope your side effects ease the same way Maes did after a few days. And I pray that both of your new treatments give a healing that leaves no ailment behind.
I woke up yesterday with bone pain that wouldn’t quit for hours. Finally had to take gabaplantin and a few naps. Today I’m venturing out food shopping. I feel the soreness in the bones (back hip) that we’re killing me yesterday but so far that’s it.
Booboo I hope you’re enjoying the beautiful spring days. How’s your treatment going?
Rosie dear how are you?
Kikomoon I hope your doctor office paper work issue is resolved. That added stress is awful.
I have a bone scan Monday and PET Tuesday. The following Tuesday I meet with dr for results.
I’m in for pocket duty next week.
Candy thanks a million times for keeping that list.
Tany
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Dutchiris, I am sorry you have had some bone progression and am in your pocket no matter what you are told is next in treatments.
Tanya, in your pocket for sure this week and for everyone.
Meal this morning was interesting. 1 egg, probably just under 1/4 cup black beans, sprinkle of cheese as well. I took a spoonful of the already cooked beef stroganoff and pasta and 1/8th cup beefless ground. Wanted a lot of different things going on. Put all of these in a fry pan, starting on high to start the egg and gradually working to a low heat. Added a small bit of spreadable garlic and mixed in. When it came out, added usual wheat bran sprinkle. Seasoned with steak seasoning as well as some italian and salt. Used tiny amount of ranch dressing combined with tiny spoonful of mayo, mixed it all together. Was very creamy and could taste everything as well. I may continue with the prepared pasta as a booster in different things as it is inexpensive but also does taste good to me. I also like rice and the other pasta but really want to stay with small portions of that.
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Candy....I am moderately PR+. I have asked about it but will ask again. Maybe trying to keep it bone only for ase long as possible? I also have the PIK3CA mutation but I've been told that it is not actionable being ER receptor negative. We will see tomorrow.
Big but gentle hugs for moth.
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Dutchiris- I am definitely no expert. I do read a lot, and virtually attend conferences, but a lot of this stuff is over my head and very confusing. If you are moderately PR+, then I would definitely ask about other anti-hormonals you could try before going on to the big guns of IV chemo. I went on Lynparza when I had progression on Ibrance/Letrozole because I had a BRCA mutation, but with my next progression I am going to ask about other orals before going to IV. I have only been on Ibrance and Lynparza as the targeted therapies. I would think you could try Verzenio/Faslodex, or Afinitor/Exemestane- an mTOR inhibitor with an aromatase inhibitor. Also, with the PIK3CA mutation you have, how about Piqray? Does not hurt to ask your MO. Maybe I am not seeing something with your case that indeed your MO will want IV chemo next.
Keep us informed, or PM me. Hugs.
Tanya- I added you to the list. Hugs.
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Hi Tanya,
I’m so sorry to hear about your bone pain. I try hard to stay ahead of my pain, but some days it’s impossible. Most of mine is managed with opioids. I used to shy away from saying that, but it’s really the only thing that gives me relief.
So far, I’ve had two treatments of Faslodex, and I am having issues with dizziness. I think once I’m done the loading dose, it should hopefully disappear. Is anyone else dizzy from Faslodex?
The weather here is simply gorgeous. I forgot how much I love the Spring in PA.
I do miss having you a short distance away. Wish we could have had another lunch together. Take care, Tanya.
Love, Boo
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I don't think I can contribute much here as I drop in and out and it moves SO fast! Picked up Moth, Mae and Candy having serious issues which hopefully look like resolving and Sondra had a birthday AND a holiday… well done. Mel is holdingeveryone together and Mara, Tanya, Boo Boo etc are hanging in there.
I'm now on Vinorelbine, had some rads due to extensive spinal bone progression which showed up on MRI but not CT. Discovered sternum fractured in 2 places which haven't healed well and caused some nerve pain but found a great cream called Capsaicin which is derived from chilli peppers which numbs that….who knew? Also hanging in there.
Sending hugs.
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Hi gang, checking in from my happy place 😃
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Tanya—-when my bone mets hurt in my back, I put on a SalonPas lidocaine patch. Seems to help my lower back. For bone pain elsewhere, I use SalonPas with Lidocaine roller ball. For pills to help, I took Vicaprophen and Flexeril.
I do have compression fractures in some T8-T12 disks. They have been radiated which stunted the pain for no
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Karenfizedbo, so good to see you, I am sorry about the nerve pain and the progression. Capsasin is great and I am know for using more chilli peppers or at least chilli powder as an additional pain relief as well.
Laurie, glad to see you too as well along with Tanya. Hoping Tanya's pain can ease up soon.
I did not get much done after breakfast, just the housework and other meals. I watched the movie Everything Everywhere All at Once with Michelle Yeoh and it was fantastic. Superb acting, great storyline and awesome visuals with an excellent core storyline. Amazing. If you get a chance to stream or rent it, you should definitely see it.
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Mae- love your happy place with the small fish swimming around. Are those two beautiful tattoos on your feet?
I am going to try the above mentioned for back pain because sometimes it is so bad I am doubled over. I hope I can get those patches here.
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hi Karen. Hello Dutchiris. Goood to see you both back. I remember everyone. Hoping you’re doing the best you can. Welcome back. I’ve been painting a lot and I love it. Soothing mind anxiety relief! Two done since I started!
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mel, I LOVE this!
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Living, yes, those are my feet, I love the tattoos but that is a very painful location if anyone is wondering.
I’m super relaxed after the swim, I think there’s something special about being in a natural spring, gonna sleep great tonight.
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Hello,
I was wondering if you could share a bit about long term disability. I do pay into it but have not used it yet. Did it take some time to get it approved? Was it difficult? Thank you for sharing.
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I’d file right away, or takes a long time And a lot of paper work. . I had an advocate called Allsup help me navigate the entire picture. You shouldn’t have any problems being accepted. The advocates really helped make the process more understandable for me. They also backdate the days that you were disabled after a disability date has been determined. Call and speak to someone that may help with questions you may have. I’d you google allsulp. I know they are specialized in this field. It may seem like a lot now, but they made it easier. good luck to you.
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