Best Of
Re: Can we have a forum for "older" people with bc?
Back spasms do respond to Lidocaine patches, but they are only on for 12 hours, so results are limited. I am taking a steroid pack for 6 days to see if this will knock it out. Our next cruise to the Panama canal leaves on 10/9.
Last night I had the overnight pulse oximetry test and woke up 3 times because the sensor was so tight my left index finger was throbbing. I have bony changes due to arthritis and the snug fitting sensor caused a pressure sore on the bony joint. I finally moved it to the middle finger, but it was also snug there. I did report it and showed my finger to the supplier who responded. "no one else has complained about this". I do not have big fingers and feel sorry for anyone who uses it next if they have pudgy fingers. Not sure when I will hear results, but it was a night where I woke several times, and did manage to drift off again.
Today was the chest CT and have not seen results posted yet. Tech did say they will be posted on EPIC even though the practice doesn't participate in EPIC. They have their own portal which is exclusively for emails. I hate that a lot of the specialties are listed as members of the MLHS, but really aren't required to participate in EPIC. I know it is expensive, but it is a real issue since their portals are all different, requiring separate user names and passwords, and many times just plain crappy. I requested that the results be sent to my new PCP.
Today was Bonefish Grill's 25th Anniversary so if you booked a reservation and spent more than $25, you would receive a reward of $10 towards your next meal there. We like the local one and have gotten to know the manager quite well. Dinner was good and they had a pumpkin creme brulee that was delicious.
Today was rainy off and on with severe storms predicted for tonight. We had some real thunder claps last night and heavy downpours that I love to hear on the roof. We have a walnut tree that is dropping its nuts now and when they hit the roof it scares Leo. It's a loud boom when it hits.
Doing the last load of laundry now and plan on relaxing after.
harley07, your trip to Vietnam sounds nice. We have used a company named Viatour for planning local tours and found them to be very nice. They employ professional locals such as teachers, etc, so you get a native's perspective and not some canned tour. Not sure if they are available in Asia but in Europe we have used them in Italy, and the UK. They are usually smaller tours and the locals speak English. I love Spain and hope you enjoy that trip.
Sandy, the mystery boxes are like a gift. You seem to be finding items you have either forgotten about, not used in awhile or were saving for the right occasion. Once everything is sorted and culled, you'll be able to enjoy them again.
I love facials and had one on our cruise. I may schedule one for this cruise though they are pricey and the girls can be pushy with wanting to sell you the products used. I do like the brand, just not the prices. DD got a manicure and wanted me to get one, but my fingers are so disfigured by arthritis, that painted nails just make them more noticeable, so I passed. Hers has lasted for several weeks, so she lucked out.
Wavinng "hi" to everyone and hoping everyone had a great day.
betrayal
Re: Can we have a forum for "older" people with bc?
petite1, glad you were able to enjoy your new hideaway. I am sure it is lovely this time of the year. Have you taken Midnight Louie yet?
Chris, you really know your show characters. Hope your thumb is improving.
Sandy, the end of boxes seems to be in sight. Once you are back living in the house, you'll find you will still be making decisions about where things fit best, what stays and what goes and what decor you'll finalize. I think we all tend to "save" the good stuff for later use and then realize this might be later at some point.
cindyny, hope you enjoyed the dinner and the play.
Was able to pickup oximeter I need for overnight sleep study. Have been waiting since May for this to happen. They did contact me the day before I was leaving for the cruise.
Needed to go to CVS for the prescriptions ordered by pain management. I was surprised that Medicare paid for the real Lidocaine patches and not the generics. I must have reached some kind of threshold in my prescription plan because the last one I picked up plus today's was free.
Yesterday my back was very tender all day but the spasms were silent until 11pm. I had a really rough night as a result even taking a Tizanidine. Spent most of the night trying to find a comfortable position.
Today was overcast and then the rain came. It is to persist into tomorrow. I have chest CT and then I am done until I get my flu shot on 10/5.
Hope everyone had a great day. Waving "hi" to everyone.
betrayal
Re: CT and Lung Nodules
Marge, I’m glad the smaller granuloma was the nodule of concern. From what I have read the monarchE trial showed that two years of verzenio continues to provide good protection even after it is stopped. You’ll still be taking tamoxifen and your MO will continue to monitor you. Long term use of verzenio is more likely to cause side effects like blood clots, ILD and liver problems. I’m dealing with those lung problems from rads and high liver enzymes from a statin. The malfunctioning liver caused a rare neurological syndrome so my right hand and arm is numb and won’t work; hopefully another year or two of PT will bring it back per my neurologist.
It must feel like your security blanket has been taken away but I wouldn’t wish SEs like these on anyone. Breast cancer upends our previous lives. Ask your MO for a referral to a counselor who can help you talk through your fears which are real. Hugs for you.
maggie15
Re: CT and Lung Nodules
Went to the dr today. He said the granular is the nodual and there no need to do CT any more but I will be asking again in a year. He also took me off my verzenio and I am really scared. I feel like I am lossing my protection. He didn’t realize I been on it a 2.5 years. I should have been off at 2 years. I don’t know how to deal with this mentally.
Re: So...whats for dinner?
Not sure if Kimmel was being aired here, but I tried to tape it so I could hear what his comments were.
My family always ate differently (we are from Europe) so as a kid, I learned to love calf's brain, kidneys, hearts, blah, blah…I introduced DH to lamb and he loves it. Also, goat.
I think peanut noodles tonight. DH's (yet again a new onco) appointment today to see what options we have for his rising PSA again. HATE this so much.
wallycat
Re: TNBC MBC Stage 4
@rlschaller Oh I love the Fall foliage! There is one tree in my neighborhood that's has fabulous colors. I will have to snap a pic once it's fully changed. How nice that the family was able to get together to celebrate. Happy New Year to you and your family may it bring you peace and joy.
Ok here been spending lots of time at my mil's as she continues to decline daily. Hospice eval tonight so hoping they can get her on service. Have to jump through the insurance hoops, fingers crossed.
cookie54
Re: Can we have a forum for "older" people with bc?
Sandy - congratulations on making significant progress with the move back in. My head is spinning thinking of all you are handling. How much longer will you be in Lincolnwood? Happy to hear your HK will be returning next week to help.
Cindy - thinking of you and hoping today’s oral surgery visit went as well as can be expected.
Betrayal - I’m so sorry to hear the back spasms are still an issue. That really limits one’s activities. I hope the lidocaine patches offer relief. Good luck with the chest CT. Do you have another trip coming up? I’ll hope the back issues are resolved by that time.
My MRI/MRCP indicated the pancreatic cyst is stable. I’ll have another one in a year and then the GI doc will decide if I can go to having one every other year for the next 10 years. I’ll get the Covid and flu shots next month.
We signed a contract to have our pool removed. It will take the contractor a few weeks to have the permit pulled because our city likes to drag their feet. Apparently the city decides the cost of the permit on a case by case basis. Such a deal! Once the permit is pulled the contractor will schedule the pool removal. The goal is to have it done by Thanksgiving when we leave for Spain.
We officially pulled the trigger on the trip to Vietnam next March. My thought is this will be our last big trip as we are getting older and travel is expensive. I’m doing all the planning as I prefer to have control of the itinerary rather than have a TA tell me what to do. Basically I’m a bit of a control freak 🤷♀️ with travel. The airfare and hotels are booked. I can wait a few months to book tours which I will mostly do through the hotels. I did book business class airfare due to the distance we are travelling. While we’ve flown biz class previously I’ve always used miles if it’s personal travel or flown on my employer’s dime for business functions. I’m retired and out of miles so I found a decent fare and purchased it yesterday.
Waving hello to all.🙋♀️🙋♀️🙋♀️
harley07
Re: 2017 BC Diagnosis…how are you doing?
The FES PET was approved in 2021 and can be useful for detecting ER+ cancer, especially lobular which has weak FDG signals. It is three times the cost of a FDG PET ($24,000 vs $8,000) so will only be covered by insurance if the doctor can make a compelling case for it. There are currently only 43 hospitals which do them. If you are taking tamoxifen or fulvestrant you need to go through a 6 month washout first. AIs don't interfere. As crossh said the FES doesn't show mets in the liver, intestines or deep in large bones.
It took 9 months from my MO's referral to ortho for hip pain to getting a FES PET for a tumor in my acetabulum which looks like a met on MRI but can't be biopsied without irreparably breaking my hip. They were looking for something else ER+ to biopsy but only my right lung lit up; that was my radiation induced pulmonary fibrosis which I learned has estrogen receptors. I'm choosing the ability to walk, hoping the bone doesn't crack and being optimistic that this tumor happens to be one of the 5% in this location that are benign. I've had so many rare SEs from radiation scatter that I have quit worrying and just deal with whatever weird health problems show up.
Crossh, I hope your surgery, chemo and radiation go well. It's nothing anyone would choose to do but we don't have much input into what goes wrong healthwise. As Sandy said cascading side effects lead to more medical problems to deal with.
maggie15
Re: I WANT MY MOJO BACK!
I agree with laughinggull! I am not on aromatase inh, all I did for my treatment was surgery. I chose not to go on meds or have radiation….but I am having scans every 6 mo. So far all is well. My MO is supportive of taking bioidentical hormones. I use Testoterone cream, progesterone pill daily (all bioidentical). And I use estrodiol patches twice weekly. Again, bioidentical. I would change MO to someone who understands the new info on bioidentical hormones…there are many MO's now I think who would agree with my MO.
Blessings!
Re: My Husband, My Life, My Love, My Family, My Cancer
@intolight @candy-678 and others saying they do not have anything to contribute, I contribute different things but mostly what I make or am doing for the day. To me that makes me want to snooze but others seem to like. You can contribute anythings, books you have read or movies and TV watched. Meals you have had too. Does not need to always be about cancer, we all know what we go through.
I just got up about 10 mins ago. Not sure what today holds for me to do. I did make up a bunch of penne and added soup noodles to it. Not sure what I am putting in today, yesterday was a bit of cheese, canned ham, garlic and the beef seasoning. I forgot to break up the noodles but they are still not bad. TodayI may do a meatpie with an egg on the plate as well, make the egg garlicky as well. I will decide later. Option two sees some of the noodle mix going in with two eggs into the magic bullet with ham, garlic and bacon bits. Pour mix into some muffin tins and bake for a bit, probably include some shredded cheese. I will see what I decide to do, either option is easy, can take the baked egg bites and use those as a side dish as well to a meat pie, I will see what I decide on, post if really good.
Got plenty of laundry to get done, cat corner needs a scoop and may wash the litter mat, looking a little dingy, definitely needs wash in one of my mesh bags, plenty of bags to choose from.
As far as TV goes, still watch young and restless though super boring, have watched over 40 years so won't stop. I also watched an animated marvel zombies, really gory and fun. Based on a comics run. Also enjoy Peacemaker show as well. Also been listening to short stories by Stephen King. Listened to Gramma, listened to the Long Walk done up as a race with a commentator, pretty cool stuff.
Not sure if I am going out with DB, prefer to get my treadmill instead. I am planning to start saving for one of my own, Amazon has a lot of folding stuff online that has handles so can begin saving up for a new one. Did call SIL, she does not know when my treadmill may be brought back. Getting tired of the delay, he could borrow a son and use them to help bring it in. She's like don't buy a treadmill but eventually I will do it. I realized that I can pace the living room as well, need to make an aisle and just go back and forth so that might be an additional treadmill adjacent activity. I will see, can also wait and see about the treadmill. I am not yet ready to commit to a gym due to not wanting to travel much in the winter. Time to take mind off of repetitive thoughts.
I hope all have a good day, in pockets for those who need me.
