Best Of
Re: My Husband, My Life, My Love, My Family, My Cancer
Ah thank you for the condolences and I will send them on to my sweet cousin, Libby. Her daddy was such a strong personality but cared a lot about the 4 of us. We had an awful father and home life, except when we visited aunt, uncles and grandparents. His wife is in a nursing home geared towards alzheimer patients. She knows he passed and then she's not sure of much of anything….. It sucks when we are reaching the end of this journey. @shanagirl I'm so darn sorry you got sick and missed your lovely plans with family. Don't know if this would help in the future, but I carry Zofran with me and keep a green hospital cuplet in the car all the time. I imagine the shores are crazy busy. Not for me, staying home and cool and quiet.
9 months since last pet scan and boy am I nervous. Thank you all for your support. I'm trying to not focus on the what ifs….easier said then done. Wanted to share the RX ointment that helps greatly with my back. It has 10 per cent lidocaine , and 20 percent benzo(?) and 10 percent something else (oh my gosh my brain is awful tonight). My point is the 10 percent lido you can't get in roll-ons or other ointment as it has to be RX. I found out about it recently and jumped at a chance to try it. It works so well that I use it on other areas. They don't give you much, so I do have to use it a bit more sparingly then I would like.
Sending out to all that need pocket duty, I'm here.
Laure;
Re: Abemaciclib Verzenio for Stage IV
@cure-ious That is an interesting study. I still have several months of Verzenio that I have not turned in (long story.) Right now I am focusing on QOL and am not sure whether I want to go back to additional side effects, but I might ask my MO next time I see her and have progression. Right now I am happy with Elascestrant and feel like I have at least part of my life back, but I am tired of the restraints of this disease and fighting so long. I shall see with the results of my next scan, which hasn't even been scheduled yet.
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?
