Best Of
Re: Life does not end with a stage IV diagnosis (really!)
@eleanora @gailmary I was on Celebrex for about a year and it was quite helpful. Unfortunately my Primary Care doctor switched to a boutique practice and it will be 20 months (this August) when I see my new one. In the meantime, when my prescription needed to be renewed, a PA refused based on my eGFR scores. I did a spread sheet and she's correct that my scores have dropped since being on Celebrex. I got another NSAID for a month but now a different PA doesn't want to renew the prescription again. I have a lot of pain from my arthritis from being off of an NSAID. Eleanora-have you ever had issues with your eGFR score? So you take Celebrex daily. I really hope to get back on it when I see the new doctor in August, but of course, I don't want to risk kidney failure. My scores used to hover around 60, now they are often between 50-60. Having the arthritis untreated is really affecting my quality of life. Walking has gotten to be laborious which is a first for me. I am doing PT but it doesn't seem to be helping. I'm going to try a massage and acupuncture this week and new ginger capsules. I do think the Celebrex also helped with my cancer.
Re: Can we have a forum for "older" people with bc?
We survived a scary storm during the night. There were gusts of strong wind. Not a lot of rain and, thankfully, no hail. Other areas in MN and ND weren't so fortunate. One of our campground community, Tamra, learned this morning that a tornado hit her parents' town and an aunt and uncle were killed. Another uncle's house was destroyed.
A couple of trees were blown down here in the campground. DH and I had to skip the farmers' market so that dh can help the owner with cutting up and removing the trees. One narrowly missed falling on a camper. I was tired this morning from having my sleep disturbed last night and was just as glad to miss the market. The forecast is for more storms tonight, thanks to the heat dome high temperatures during the day.
Sandy, good luck on moving into your house.
Happy Sunday to all.
Re: Can we have a forum for "older" people with bc?
I am wearing one of my sari outfits today. Don't know if I will wear it all day. Prediction is for the feels like to be above 100 deg. Tippy has been walking on my keyboard, and it is a bit wonky. Add that to my fingers, and I am a bit frustrated. I put some elastic gloves on under my thumb braces and getting more comfort. Fitbit even let me out of jail! Will ride my bike over to AF and do a bit of exercise.
Cindy, glad to see that you were able to get out and se that concert without exces fus and bother. Se the wonky keyboard? Maybe he trigered a disability program, because it is almost al double leters?
I have an appointment in the city on Monday for a lung scan (ex-smoker's program, I think it is part of a study I am participating in. Tuesday I finally will be seeing the ortho! Finaly. But then waiting for insurance approval.
Sandy, happy to see that you are finally able to move back home.
mcbaker
Re: how about drinking?
NM, sounds like the company you hired for cleaning and decluttering did a great job. Two dumpsters! Wow!
We survived a scary storm last night that brought down two trees in the campground. Thankfully, not on our camper or on anyone else's camper. The bad news is that more storms are in the forecast for tonight.
Re: Life does not end with a stage IV diagnosis (really!)
@eleanora , thank you. no treatment from the back dr for the hemangioma. He insists that the pain there is a pulled muscle. Never saw symptoms from those in 12 years. Its from doing next to nothing. So will wait and monitor till i get a compression fracture there. Pet scan due in 5 months. We can see its progression then. Had to see a different dr for pain meds. Celebrex is helping.
gailmary
Re: Long term survivor examples.
My name is Amanda and I am 31 yrs old and was diagnosed with triple negative IDC in Nov. I just signed up for this website today and I am really glad that I did. This is the first site that I have been to that offers positive thinking and hope for TNBC. I have been so sad and scared about dying since I got the diagnosis but reading all of these posts and stories have helped me so much.. thank you all 
amw2282
Re: TNBC Survivorship plan
Thank you for reaching out. I have been seeing a psychiatrist for help coping with the news. She specializes in cancer patients and has been very helpful. I don't feel sick and knowing the cancer is growing in me is hard to believe. I have family support and very grateful. I'm the type of person who wants to know the hard facts from my oncologist unfortunately he can't say how long I have.
I would love to hear from anyone with stage IV TNBC who has been on Trodelvy.
Re: TNBC Survivorship plan
Hi @luzio19130,
We are so sorry to hear about the updated staging to Stage IV, and it's understandable that you're experiencing a lot of anxiety around life expectancy. We've often heard individuals share how surreal it all feels. What has your emotional support been like since receiving the news?
Re: TNBC Survivorship plan
I was diagnosed with TNBC in May 2023 in left breast and left lymph nodes. Had 3 months carboplatin, 3 months AC, all with Keytruda.
Petscan after chemotherapy completed showed no response to chemotherapy. In December 2023 had bilateral mastectomy and 14 node removed. Pathology showed all 14 nodes had cancer so went back for full left node dissection.
recent Petscan shows cancer met to right side lymph nodes. Onc says this is stage 4 because it crossed over.
started Troveldy yesterday.
i can't stop thinking about my life expectancy now that the cancer recurred so quickly and ugh.
my name is Michele. I live in Philly
Re: how about drinking?
Good Morning, Loungettes! Happy Saturday! It's been a busy and exhausting week but well worth it. Two big dumpsters worth of junk and clutter hauled off, all the flooring pulled up, mold areas cut out or cleaned up, walls washed, counters and surfaces cleaned, and they even picked up a bunch of clutter and junk from outside the house for me! It is such a relief to have the big stuff that I can't move myself taken away and out from underfoot. They even took the old stove that barely works and has been a pain in my anatomy away. Now begins the process of putting things back, reorganizing as I go, but with everything is in laundry baskets I got for this job. The baskets are small enough that I can move them even when they are full, but small enough that I can deal with all the contents of one basket without getting overwhelmed and giving up. The game plan is a basket a day. I've already ordered new crates for the puppers, that look like furniture. Zoe's will double as the TV stand, and Colt's will go in front of the window and become my indoor garden spot.
The hardest part of all this was having the puppers in the kennel. I do not sleep well at all without them in bed with me. I slept soooo good last night though! They are having quite the time running around and sniffing over everything and seem to be wondering where everything is!
Mom actually seems to be doing a bit better since finding out she's going to be moving as soon as we find an appropriate place. I did not realize she wanted to get out of that apartment so much, or that she was so uncomfortable with landlord. She always said and acted like she was really happy there. Anyway, we have an appointment to see an apartment in a retirement community nearby on Friday. I believe they have openings there now, and if they do I'm going to start the paperwork right away and see if I can get her moved right away. I've already started the paperwork for the place she wants to go to permanently, which will be better for her but is not expected to have any openings until later in the summer and I don't know how long the waiting list is. I don't like the idea of her having to move twice at 89, but not much to be done about that. I'm trusting God to make this all work out.
Carole--yup, that was scary, and made me realize how much more important it is to get Mom moved that I had been thinking. Thanks for the helpful vibes! My next major project is going to be getting new flooring put down throughout the house, the CPR certification business is starting to pick up with a big class on Monday and another next month that I hope will turn into a repeat customer.
Minus--I thought about having someone stay with Mom, but couldn't think of anyone she knows that was available. Going forward I will try to find someone to visit with her when I have a multiday project going on.
Reader--thanks! What a beautiful picture! Where was this taken? Did you take it?
Rischalier--I wish I could take mom in, but it just wouldn't work. She can't manage the stairs to get into the house, she doesn't like living with dogs, and I live too far out of town for her friends to visit. I'm not a big red wine drinker, I prefer whites and rose, so I don't have any recommendations for you.
Maggie--yikes, what a scary situation that must have been! At least my mom isn't wandering. I do need to take more control, though, I know now.
Jazzy--thank you! The blossom is beautiful!
Wandering ELRIS
Ingredients:
- 2 oz homemade shine muscat liqueur
- 1 oz dragon fruit puree
- 0.5 oz lychee syrup
- 0.5 oz fresh lime juice
- 1 teaspoon violet flower extract
- Edible glitter (gold or purple)
- Fresh muscat grape for garnish
- Dragon fruit slice for garnish
Instructions:
- In a shaker, combine the homemade shine muscat liqueur, dragon fruit puree, lychee syrup, fresh lime juice, and violet flower extract with ice.
- Shake vigorously until well chilled.
- Strain the mixture into a martini glass rimmed with edible glitter.
- Garnish with a skewered fresh muscat grape and a thin slice of dragon fruit on the rim.
Glass: - Serve in a martini glass to emphasize elegance and allure.
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