Best Of
Re: My Husband, My Life, My Love, My Family, My Cancer
Just popping in to say HI and that I am still here. I read on here daily. Not much new here. Still the stomach issues with the current treatment. Learning to "manage" it…. not really, but what can you do? I have next scans in a couple of weeks.
Re: My Husband, My Life, My Love, My Family, My Cancer
GOOD SUNDAY MORNING LADIES ‼️🩵🌻
HI @goldensrbest it’s just so nice to “see” you girl!
OH @norah2024 I’m so sorry you’ve been through all of these medical issues during your treatment on Affinitor.the other lab test issues are alwyas disheartening. I my labs are mostly normal but my Calcium is sky high,and now I’ve been referred to an Edocrynologist who regularly works with my oncologist. I’m nervous about being suseptible to Pneumonia now while going back on the Verzenio next Monday. I once had a minor bout of Pneumonia back in 2011 following my knee replacement surgery, I cam down with it in the hospital, and I did physical therapy with an oxygen back pack and got thru that in a couple of weeks. I was already doing my 2mile walk on the boardwalk with DH 6 weeks after. I never experienced the horrible Pneumonia I had this time. It was so debilitating @norah2024 . The morning after I had been up coughing all night when we got back from southwest Florida, visiting great grandbabies, I was so deathly sick, passing out in the bathroom, and falling. When my DH & Son, helped me back int to bed they noticed all the blood coming out of my nose, down my nightgown,and all over my pillow and bed sheets. They called an ambulance who came immediately. They said I was flat lined and twice, and I coded when I got o the hospital again in intrusive care. They tested me for legionnaires, H1N1, covid 19, tuberculosis, streptococcus, staffococcis…..everything. But the bacterial PneumoniaI had was the result of a deadly red algae bloom in Forida that was killing all the manatees and fish & wildlife. The news in Florida was reporting that theis bacteria had gone “airborne” from the dead fish and animals, and was traveling up the west coast, where we were staying at a beach resort. I never went to the beach but stayed at the pool. Anyway the hospital pulmonologist and infectious Dr adjusted my antibiotic IV to fight this bacteria beaus it had caused sepsis in my lungs with nodules and mucous strands in my bonchial tree. I was treated with respiratory therapy also. @norah2024 & @intolight it was the worst eperiance of my life. Especially the humiliating bed pa. I was so weak I could barely get up to sit in a chair, or sit up to eat a meal tray. The most scary par of this was all the blood befor going in the ambulence. It was the Florida Red Tide that took its toll in my lungs.. they were concerned my blood wasn’t clotting.. but the bleeding in my lung had stopped by the next day. They kept me for a week and sent me home with daily repiratory therapists and and occupational & physical therapy for 3 weeks I asked them how long I would keep feeling so weak and and unable to do things. They said at least 6 weeks to 6 months or more. I am just now getting my voice back.I never realized there was such a thing as as hemorrhagic pneumonia. That Red tide can be lethal to people with immune and lung issues.. We’ve been visiting Florida for years. We would take yearly 3 wk vacations when the children were growing up, and until we watched the new in May when we were visiting the grandchildren in Ft Myers, I had never heard of Red Tide in Florida, and we always stayed on the west Coast for family vacations.
@candy-678 in your pocket while your dealing with your stomach issues and upcoming scans.
@mara51506 glad you are sleeping well and feeling pretty good. You are a miracle to me.
Re: Can we have a forum for "older" people with bc?
I've been visiting but not much to add. Never did cross stitch but needlepointed for years - dining room chair covers, Christmas stockings, wall pieces. Had to quit when my hands got too arthritic to hold the needle and my eyes got so I couldn't distinguish the shades of color. I remember those cards of threads though. I'm not being successful at uploading some pics though.
Now I just knit. Working on the last panel for Ella's graduation gift - thankful way ahead. She's only a sophomore.
Have a good week everyone.
1946taco
Tiffany`s Twenty Terrific Tips for TC
I just wanted to share with everyone my tips for getting through TC chemo, which I think helped me a lot. My only symptoms were a touch of nausea on days 3-4, a bit of diarrhea, constipation, dry mouth, and fatigue. I never got sick.
1. During chemo and for several days afterwards, drink a LOT of water. I drank 3 liters a day from this bottle: http://www.amazon.com/Nathan-Big-Shot-1-Liter-Bott...
2. Ice your hands and feet during Taxotere. I used these http://www.amazon.com/Elasto-Gel-Chemotherapy-Hypo... and these http://www.amazon.com/Elasto-Hypothermia-slippers-... and never had any neuropathy or nail changes. It does make playing on your iPad or reading difficult with the mitts on, so I just listened to a podcast during that infusion.
3. Suck on ice as often as you can bear it during your infusions to avoid mouth sores.
4. Get the OPI Nail Envy and Avoplex cuticle treatment set here http://www.amazon.com/Opi-Say-Hi-to-Fortify/dp/B00.... Use the Nail Envy as directed, and apply the Avoplex twice a day or more often if you can remember. I kept 2 bottles of the Avoplex, one at work and one at home. Keep your nails very short to avoid snags and tears.
5. Get some Dixie cups and pre-fill them with 1 tsp of baking soda. I filled an empty 12 oz mouthwash bottle with about 3 tsp of salt and a 1/2 tsp of peppermint extract (for flavor) and poured some into the Dixie cup, swirled to mix, and gargled/rinsed with it in the morning, after every meal, and at night. I bought this mouthwash to take to work to avoid the mixing hassle, and I really liked it http://www.amazon.com/TheraBreath-Dentist-Recommen... Never had a single mouth sore.
6. Flossing during chemo can cause bleeding, I learned the hard way. I got a waterpik instead and used this to floss. Much gentler on the gums. I found mine cheaper at Costco, but here it is on Amazon: http://www.amazon.com/Waterpik-Aquarius-Water-Flos...
7. I got a value pack of extra soft toothbrushes at Costco, and bought this on Amazon to sterilize after every use: http://www.amazon.com/Oral-Stericlean-Portable-Too... I threw out the toothbrush and got a new one when I started each cycle of chemo. Clean toothbrushes prevent you from getting sick while immunocompromised.
8. Exercise every day. Seriously, even on bad days. Get up and go for a walk around the block. Every day go a little further. When youre feeling better immediately get back to your normal exercise routine. It helps so much!
9. Wear slippers around the house, especially if you have hard floors. This helps prevent neuropathy in your feet. And forget about wearing heels during chemo.
10. MOISTURIZE like crazy. After every shower, cover yourself in a high quality, paraben free, hypoallergenic moisturizer from head to toe. Moisturize your hands and feet every night, and wear cotton gloves to bed.
11. If you get dry mouth, especially at night, try these for sleeping: http://www.amazon.com/Oracoat-855933000517-Xylimel... They worked like a charm for me. During the day I sucked on hard candies or ACT lozenges.
12. Stock up on fresh fruit and bread for toast. On my "bad days," usually days 3-5, I really didnt want to eat anything besides fresh fruit, smoothies, and toast. Your mileage may vary, but this was the case for me.
13. Sign up for www.takethemameal.com and send the link to friends and family. This ended up being more for my fiance, who cant cook to save his life and I was not feeling up to cooking, but I also ate some of it when I was feeling better. The help was greatly appreciated, and the site is free and super easy to use.
14. Do something special that you can look forward to after each chemo, such as watching one season of your favorite show after every round on your bad days. For me, I downloaded the Game of Thrones game onto my iPad, which has 4 episodes, and saved them for my bad days when I didnt want to do much besides lay around. I played 1 episode after every round and it gave me something to look forward to, even though I wasnt feeling great.
15. If you have diarrhea, start the Immodium immediately, dont let it go. The bottle says only 4 per day, but my MO said up to 8 daily is fine. If you have constipation, Senokot helped me. Unfortunately every round for me was a different GI tract problem, so I never knew what to expect!
16. QueasyPops for nausea helped me a lot, and if you email the company at info@preggiepop.com and tell them youre undergoing chemo for BC they will send you a free box!
17. Also, start taking your Zofran the night of chemo and take it every 8 hours on the dot for 5 days afterwards. I never vomited when I kept this up, even though I felt queasy occasionally. I DID vomit when I forgot to take the Zofran after the first round, and learned the hard way.
18. The website http://breastcancerfreebies.com/ had lots of offers for free products and services to help. I was able to get free home cleanings through Cleaning for a Reason, a free high quality headwrap from Good Wishes (which I donated after I didnt end up needing it), a free bar of soap from Bethesda Skincare, a free bag of makeup from Look Good Feel Better, and sweet cards and gifts through the mail from Chemo Angels. All of these things were wonderful.
19. If youre interested in keeping your hair, I used Penguin Cold Caps with amazing success. While it was definitely a hassle, the feeling I got from keeping my hair was priceless. I felt in control, and I didnt look sick so I didnt feel sick. I could go out in public and be treated normally without stares, pity, or special treatment. That really meant a lot to me. And I was able to get financial assistance through www.ccaps.org. The cold wasnt fun but was bearable and totally worth it. I have a whole nother set of tips for cappers if youre interested!
20. Sleep naked. This helped with hot flashes, which I developed after round 3, and also apparently prevents yeast infections by helping maintain air circulation down there.
Thats all I can think of right now. I hope this helps. Any more tips ladies?
tshire
Re: My Husband, My Life, My Love, My Family, My Cancer
@threetree yes dose reduction is scary. My onc reduced my Verenio last year or so ago, and it worked out t well. I’ve been a little nervous lately because I’ve been totally off it since May 3, and they didn’t want to put me back on it, because of my recent hospitaltion for Hemorrhagic pneumonia and afterwards during my recovery. They want my scans to show lung improvement before putting me back on it and mentioned that 2 weeks I can go back on it, but I’m afraid because I’m still coughing a lot when I try to eat, I’m now a little worried he’s going to change me to something else. we’ll see. I had my injections last week for Falsodex and Xgeva and I’m always good afterward, but by the 2nd day I have a lot of fatique Bone pain and head aches and weakness. Yesterday I felt wiped out, and could even eat I was so nauseous. The SE’s seemed worse in the days following the treatment. I’m wondering if it has anything to do with my recent pulmonary problems and the medications I’m on with steroids inhalers and cough suppressant gel pills. So just giving in to it and not doing anything. It’s too hot to go out, so staying in and resting, watching TV, and doing laundry during the day.. oh and @norah2024 thank you for your kind words.! Just a quick update on my asetabulum and labrum issues I went for radiation palliative treatment last November Thanksgiving time for 10 days. So far so good, no more pain issues., my labrum was just “frayed” but not torn like yours was. Have a great day ladies all here🩵🌷
Re: Can we have a forum for "older" people with bc?
My kids, 2 of my granddaughters and I and I did a 5K breast cancer fund raiser today. I had never done anything like this before and wanted to do it to celebrate my last day of radiation. It was overcast and there was a breeze, but by the time we were done my hair was dripping. It’s so humid here. Came home and we celebrated with lasagna I made. I’m such an introvert that I didn’t go up for the group picture. Now my back, hips and knees are killing me but I’m so glad we did it. Hopefully we’ll be able to do it again next year.
I haven’t heard of architectural distortion. Mine was found by MRI and hadn’t shown up on my last mammogram. I was eligible for the high risk clinic because my mother died of breast cancer. Because I was diagnosed my daughter will be screened twice a year now.
I grew up in PA, just in the western part. Anytime we go home to visit my brother I’m amazed at the horrible amount of gnats! We didn’t have that when I was a kid. We lived in the country and I was always in the fields and woods and never saw a tick. Now, apparently they’re everywhere, too.
Hang in there, susieq, and keep yourself in God’s hands. Everyone enjoy the rest of your weekend.
l1ttlec
Re: Can we have a forum for "older" people with bc?
I was up and out early this morning. For nothing. My next-door neighbors in the campground, Mary and Lyman, asked me to pick up Lyman in town at the Chevrolet dealer. Lyman thought he had an 8 am appointment to drop off his truck for a major repair. When I arrived at the dealer, Lyman was sitting in his truck. The repair dept. didn't have him down for an appointment. So I drove back to the campground and resumed working on Spelling Bee on my laptop.
Lyman is a Vietnam veteran, a lung cancer patient, and a heavy smoker. I think he is developing some dementia. His wife, Mary, is a domineering woman and badgers him unmercifully. The dementia may be self-protection. At any rate, I won't be going to the gym as I normally do on Friday. I will do a load of laundry and enjoy a nice morning. I may walk for exercise. A change of routine is probably good for an elderly person, and I qualify.
Dh is off at the golf course. Otherwise, he would have been tapped for pickup duty.
There are major changes in the works for this resort/campground, but we are committed to secrecy as far as the other renters are concerned. The older owners, in their 70's, want their son and his family to take over. One possibility that has been hinted at is that the campground will be phased out. We have been reassured that our site and Mary and Lyman's site will not be affected. I guess we can continue coming here until nature cancels our contracts. DH and I aren't worried. We live day to day, year to year. It wouldn't break my heart to stay home year round.
Enough rambling. Happy Friday to everyone.
Re: Can we have a forum for "older" people with bc?
Carole, I hope your wrist feels better after a day off from golf.
Intolight, a gf had TMJ. I hope you're able to get some relief after your dentist visit.
Betrayal, the cross stitch project sounds interesting, but also big! Good luck figuring out the rest of the tree.
We went into Hyannis yesterday. There is a notable homeless population that I didn’t recall from previous years. It seems it is the center for public services on the Cape. We shopped a bit, had a great meal with seating outdoors, and headed down for a sunset cruise.
Beautiful weather! There were 140+ on the boat. And a musician, girl on a guitar, played the entire cruise. She was good, although I didn’t expect music, and we were sitting right in front of her. I’d swear when I booked it, music wasn’t mentioned.
Today we are heading out to the National Seashore. It should be partly sunny by then. But I’ll bring a sweatshirt! The wind from the Atlantic is strong out there. On the way out of the park, on the main road we’ll stop to get seafood bisque and clam chowder to eat once we’re back at the house.
Hoping you all have a good day!
cindyny
Re: Can we have a forum for "older" people with bc?
Thank you, Betrayal, for the tribute to Jackie. A whole year. Hard to believe. I miss her, too. Also, Connie, our bird watcher.
Pictures are indeed worth a thousand words. The photo of your driveway and yard indicates the large scale of your gardening. You must own a very valuable piece of real estate, located next to the famous golf course and country club which hosted a big PGA golfing event during the past year. It's a gorgeous golf course and membership in the country club must be way above my budget.
I was awakened about 2 am with severe wrist pain in my right wrist. Totally unexpected because I didn't knowingly injure my wrist during the day. I got up and rubbed on ointment and took two Tylenol for Arthritis. Eventually I went back to sleep. The cause is a mystery. This morning I'm trying to use my left hand for drinking coffee and reading and writing on my laptop. I may buy a brace today. I welcome any diagnoses from those who have experienced something similar. The only ailment that comes to mind is carpal tunnel.
I'll have to look up purslane.
Hi to everyone. Have a good Monday
Re: My Husband, My Life, My Love, My Family, My Cancer
@shanagirl I am glad you are enjoying the turkey pot pies, they are so easy to make, most contain veggies already too. I like the crust part myself. In your pocket hoping you are feeling better as well, give yourself time and pot pies. 😋
I slept well last night, few dreams but that is fine, usually find a solution. It usually involves saving the heroes of movies that have a terrible ending. I end up feeling good about that kind of stuff. Makes sleep better for me.
Laundry on the go, cat food underway. I have decided to suspend water as Tigger tends to drink a lot during meals and that upsets his apple cart. I set timers between foods, they eat throughout the day. Also set timers after food to make sure they have water going. Been working better for both cats and their apple cart.
I am planning to get rice, lentils, chick peas and beans together, probably heat up in a pot and water. Season water, could put in an egg too. If putting that much stuff, I also need need to be sure I use smaller amounts of each. Put all in the pot til done and then, take out of pot and put in bowl, add bunch of shredded cheese, microwave and figure out seasonings.
MEAL 1 1cup of the lentils and chickpea mix, added queso, and shredded cheese. Heated 4 mins on high in microwave. When came out realized, should have left queso til came out of microwave, was initially very soupy. I also added sour cream and onion dry seasoning, sprinkle of salt. It really tasted good.
I got some more taco seasoning, mild of course, some chips I like and a beef pie. Not too much money and is supposed to arrive soon.
I am hoping all have a really good day, in pockets for all as well.
