Best Of
Re: My Husband, My Life, My Love, My Family, My Cancer
@intolight - So nice to hear from you as always. I find you a real inspiration since you had so much going for years now. I'm glad the Oserdu is working for you with the ESR1 mutation. I wound up with an AKT1 mutation so Oserdu won't do any good for me. They have told me that Truqap is the drug that is designed to work with the mutation I have, but my MO wants to keep going with the fulvestrant and Verzenio as long as possible, and I totally support that idea. I don't see where these next groups of drugs work as well and for as long, so I'm really wary of switching to anything else unless there's just no other options what soever. My MO is suggesting staying on the current drugs but adding liver treatments like ablation or Y-90, and I'm hesitant and exploring these possbillities. I'm getting blind spots all of a sudden, so going to stop here. It's a sort of migraine thing that gets real bad after the fulvestrant shots and I can't always see completely what I'm typing and things just start to look strange. Will get back on when the visual aura stuff stops. Darn it anyway!
Re: My Husband, My Life, My Love, My Family, My Cancer
@threetree I've been wondering how you were doing, and am sorry the fulvestrant has got you down. I don't keep up well either, but there are some of us who have been on this thread a few years. I am sorry to hear of your liver problems. I have had mets in the liver de novo and I have been able to keep them either stable or reduced most of the time. Currently I have no active bone mets and I am on Orserdu for the liver. Orserdu works with a specific mutation, ESR1. You also do not need to take fulvestrant with Orserdu so I am happy about that. It is new and crazy expensive ($27,741.00 for 30 pills) so I make sure I have a foundation that supports the cost. Medicare picks up the rest. We found the mutation from a liver biopsy. I have not had my flu shot yet either, and may be getting over a light case of it as I have been sick a few days. I will talk to my oncologist next week.
@candy-678 Sorry to hear about your latest stress challenges. I have not had any surgeries but my oncologist does not do mammograms as the scans pick up anything suspicious, although I am still told to check. My original cancer was not found in the breast but was still Stage IV.
@mara51506 Happy Thanksgiving. Hope you find some joy this week.
Thinking of you all as I read along.
Re: cording (axillary web syndrome)
I had cording and did have a couple PT visits to help with it.
one thing the PT recommended was holding the stretches for longer than I had been at home, instead of holding for 10 seconds holding for longer as tolerated. That seemed to make a big different. She also did some massage of the area which helps to release the cording.
ann5631
Re: My Husband, My Life, My Love, My Family, My Cancer
Update on today's first meal, took a frozen stir fry, opened container and heated it in the microwave, while that was happening, pulled out an egg and when I put the precooked stir fry which is noodles, peppers and broccoli, added garlic, a ground up bit of those BBQ chips, added the egg to the already heated pan and added some shredded cheese. Put dollops of garlic spread and the butter, stirred in the cheese and covered with a lid, no heat. Will serve myself in a large dish, eat as much as I am able, put rest into another container. Can still make a separate chili meal later today. Am looking forward to the first meal.
Also discovered that with walmart delivery, was paying the minimum order of 35 which turns into 40 to 50 by the time tip comes on board. I would be better served to order under 35 if only need a couple of items and pay the 7.97 since before signing up for the year long plan of free delivery, I paid 12.97. I will consider the costs and what I can get, no order needed as of now but just a thought percolating. I also need to consider Paratransic roundtrip is 5.60 so really not paying much more than 2 bucks more to get delivery.
Re: Traveling with MBC - Inspire others with your vacation experiences and tips!
Hello! New here. In December of '23 (after my initial dx & tx and prior to my metastasis DX) I drove myself 12 hours to spend the Holidays with my youngest child in Florida. Since I couldn't drive myself this past '24 Holiday Season, my husband rented the largest SUV he could find, we spread a foldable single mattress on the second row seat, with pillows, and plenty of blankets on it. I felt like Queen Sheba, lounging on my settee, and enjoying the sights there and back. LOL. That monster SUV was so big there was plenty of room for both wheelchair and walker, a cane, and plenty of food, clothes and snacks. I think we could've fitted a portable toilet if we wanted to! We might do that again, or maybe rent a converted van next time. The first item on my bucket list is TRAVEL! I definitely want to make it all the way to CA. Next stop, however, is our first ever cruise for Valentine's Day. I already secured a handicap accessible room with an ocean view balcony, and I'll keep y'all posted when we get back. I already warned all my doctors that there ain't no amount of illness or treatment gonna keep me from fulfilling my dreams of traveling the world with the love of my life, all the way to my grandfather's birth place in Europe, and enjoying every moment of life I have left with him and our children. Blessings to all!
Re: How has normal, day-to-day life changed for you after diagnosis? Share your “different normal.”
I finished treatment on Thursday and found this thread very helpful. This was my second diagnosis so you'd think I would know what "different normal" looks like, but I'm finding it'll be a "different different normal." I'm a bit lost, to be honest; it's still as strange not to have daily/ weekly appointments as it was last time.
Still, my day-to-day echoes my previous lives. The lawn still needs to be mowed, laundry still needs to be folded. I've worked throughout treatment, a welcome constant.
On the other hand, bone pain is a daily problem. Hot flashes remain severe - I've been menopausal for years but chemo really shut things down. I still wake up with cancer the first thing on my mind. I'm deep-down-to-my-core exhausted.
My goals are to rebuild strength / flexibility / stamina, and to find some joy or meaning in every day. I take photos of my hair regrowth so I can see the progress (a tip learned from the June 2011 chemo group here). I started seeing a therapist. Some days I feel hopeful. 💝
kks_11
Re: Positive nodes with long term survival
I was diagnosed in 2010 with a large hormone positive tumor and 4/5 sentinel notes positive. I had a lumpectomy with iffy margins and there was still cancer after a post-chemo reexcision, so I had to have a mastectomy before my radiation. I was pretty sure I wasn't going to make it but I'm 15 years out this month.
Re: Can we have a forum for "older" people with bc?
carole, I always ended up holding the disposal when dh replaced it. Thank your dh for his ingenous replacement. I always felt like I was going to pop a shoulder.
harley07, humidity in PV was so high, you didn't sweat. The temperature was high as well but much like our summers so not unbearable. It was nice to get off the ship. Sea days today and then 2 days of scheduled tours.
Waving "hi" to everyone.
betrayal
Re: Can we have a forum for "older" people with bc?
Thanks for sharing the photos, Betrayal.
Cindy, you're a true friend.
We spent half of yesterday am installing a replacement disposal. DH comes up with clever ways to do things. He used a jack to hold up the old and then the new disposal. And he lay on a couple of pillows. I assisted by handing him things. Lowe's wanted $165 to do the job.
I plan to go to the 11:30 senior exercise class today.
Hi to all.
