Best Of
Re: ER-, PR-, Her2+ Roll call
Update- so I think I have sprained my pectoralis muscle on left side. I have submuscular implants. Has anyone had this before and if so how long did it take to heal?
My breast MRI and chest CT were normal - thank goodness! No signs of cancer or capsular contracture to explain the discomfort.
snm
Re: BRCA1+: what's in your surveillance/ survivorship plan?
Hi @kks_11, we're just bumping your thread in case others who are BRCA1+ and in surveillance missed it earlier. Your question is an important one, and we hope more members who’ve been through similar planning can chime in with what their teams are doing. We're thinking of you and hope you get more responses soon.
The Mods
Re: Finishing verzenio
Hi,
I’ve just joined and am reading lots of comments about Verzenio. I’m hoping someone may have experienced the same issue I am currently trying to work through with my oncologist.
I had partial mastectomy and axillary clearance (3/11) in May 2024, followed by chemo and radiotherapy along with Letrozole, vitamin D and calcium. As I was finishing chemo my oncologist suggested Verzenio which I’ve now been on for 12 months, starting at 150mg and being reduced to 100mg.
I requested my Estrogen levels be checked to make sure everything was going in the right direction. Sadly not - they were at 550 instead of 0. This led to a monthly Zolodex injection which has had a very minor impact to date. A CT scan showed no physical reason why estrogen levels weren’t dropping.
I’m hoping someone here may have experienced similar and have answers or suggestions for getting me levels down. Had gallbladder removed in 2021 and diagnosed with Type 2 diabetes in June 2022. Not sure if either has an impact.
Any suggestions would be appreciated.
Thanks for reading.
Re: My Husband, My Life, My Love, My Family, My Cancer
Thanks for the kind thoughts, but I'm still on Kisquali, no drug change needed yet!
eleanora
Re: mastectomy and possible reconstruction
I ended up with lump and then re-excision and did implant but was younger than you are. They can do reduction and lift on the other side if you want to make it match but at that point was tired of surgery and said no. Now have one floppy one that is me and one smaller implant at this point and personally at this point do not care. I knew someone your age who said when she was diagnosed to take them both and went flat. She did not care and just wore loose clothing. She did not want more surgery either and wanted be done with it all.
You have to do what is best for you and what makes you feel good. For me I did not care when I go out I do still wear more lose clothing any way since more self aware as well.
My husband I have been married many years at this point and been through a lot of health issues since he is also a transplant patient at this point and diabetic as well. Then my cancer as well. He does not care how I look either and says being here is what is what is important and bet yours feels the same way. Best wishes to you.
Re: STEAM ROOM FOR ANGER
I am so angry…
I can’t be the only one who has that family member or friend who constantly sends messages or posts on your FB page about “miracle” cures or half-baked conspiracies about cancer or how if you just pray hard enough you will be cured. At first I ignored it, but now I’m just trying to get this person to understand how ridiculously hurtful their behavior is. Any suggestions?
Re: STEAM ROOM FOR ANGER
@july31 Younare definitely not alone. I didn’t ring the bell either. I went through chemo during Covid and had a different nurse on the last day. If I’d had the same nurse who had gotten me through the rough spots, maybe I would’ve done. But I knew I had 7 or 8 weeks of radiation ahead of me, so it didn’t feel like being finished with anything.
I have never liked the term “survivor” for exactly the same reason. We have made it through active treatment. We may or may not have “survived” cancer. I prefer the term “warrior”. A very good friend, who is about 4 years ahead of me in this battle, suggested that term instead. I feel it’s definitely more appropriate. Yes, most if not all of us go through a “what the f just happened?” phase upon completion of “active treatment”. It takes a while to wrap your head around the emotions you have experienced and are about to experience. It does get better, but it will continue to sneak into your head.
I wish I had better advice than this for dealing with people who know about it. Try to give them grace. They care about you, but that doesn’t mean you have to be overly accommodating. Tell them how you feel and what you’d rather they do. Not everyone will understand. I have learned the hard way that people will surprise you (good and bad) in how they cope with the news. I don’t blame you for keeping it quiet. I wish I’d kept it a little more to myself. I’ve lost friends and family over it. I’ve also learned that there were people who really stepped up and helped me through. If you ever want a place for realtime discussion, the Bonded By Breast Cancer zoom meetings are a good place to laugh, cry, and just hear what others have experienced. The Friday group tends to be smaller and more intimate than the Monday nights, but both are great when you need to just talk to someone who actually gets it.
Hang in there. You are definitely not alone.
Re: cording (axillary web syndrome)
not much honestly. But I do have a cancer rehab physical therapy appointment coming up early Tuesday morning which I hope will be of a lot of help; had an acupuncture visit yesterday and she actually helped me figure out a good way to stretch to get some stretch into those lower thoracic/upper abdominal . Although how you would ever get them to “pop whether that would even be a good thing is kind of baffling to me. Hopefully answers from the PT!
Re: My Husband, My Life, My Love, My Family, My Cancer
Update from me….
I had scans last week and my MO appt today. All still looking good on scans. We stopped the Lupron after the last dose in August (3-month dosing) due to my age of 55. I asked my MO about starting an AI back- we used letrozole with the Ibrance, but stopped it when started Lynparza. I told him I wanted to cover the hormone receptors and not just be on the Lynparza alone. He was agreeable and so I am starting letrozole back. I am glad I have a MO that listens to me and lets me do things that I suggest.
Re: how about drinking?
Good Morning, Loungettes! Happy TGIF day! Things with Mom just keep piling up.
Took her to her iron infusion appointment on Tuesday, got a call from the facility while were there telling me that Mom has to move into an assisted living room or move out of the facility "for safety". The "Suite" as they call it is one room with attached bathroom. No ocean view. The kitchenette will have a mini fridge and room for a microwave. The room is "coming available next week."
Wednesday I took her to her eye doctor's appointment to get new glasses. 2 hour drive from her place to the office. Got there at 12:30 for her 1:00 appointment, couldn't go in because they were having a meeting. Let in a few minutes after 1 PM, Mom is not in the system. The doctor she had an appointment with left the practice a couple months ago (Mom's appointment was made almost 4 months ago). So no new glasses and starting from square one for that project.
Thursday I was looking through some of Mom's mail that I found on the floor of her apartment and found a letter from the hematology office with a list of blood tests and a clinic appointment for Nov 25th that I knew nothing about. All of these items were listed as "self-pay." All the blood tests have already been done, now they want over $1K to do them all again? And another appointment that I was never told about? Over an hour and 4 transfers to finally get to someone who could actually access anything to find out that Mom's account was changed to show her as uninsured recently. The woman I was talking to at the end could see her prior Medicare information and put it back in. She could see where the blood tests have already been taken, but could not see a clinic appointment for Nov 25th, so not sure what that's all about. I file a third formal complaint about information screw ups as Mom has signed 3 releases allowing appointment information to be mailed to me since August.
So, just took a side trip to lay out all the details and draft a letter of complaint. Now if I can get the printer to take the paper I can start sending this off to everyone I can think of that will give the hospital system grief with me.
Carole--Mom is currently in an Independent Living apartment, about to be moved into an Assisted Living room. I'm surprised no one has checked your liver function recently, that should be done every 6 to 12 months on someone taking a statin due to the liver damage the drug itself can cause.
Teka--I'm trying to take care of myself, but it's awfully hard when there is something almost every day that I have to spend hours on getting done or getting fixed.
Wren--you went to Laos?! Wow, that must have been some trip! Can't wait to hear more about it!
Jazzy--I have heard of the Anastazi, but didn't know about the disappearance. Quite a mystery there. I'm glad the petroglyphs are being protected. I know Mom and I are still in the adjustment phase of her move, and I don't disagree that she needs a higher level of care than Independent Living, but everything feels so out of control and uncertain and I don't know what to do get past it all. Mom may be in a much safer place, but I feel like there is a lot less security about what's going to happen next than before she moved. I will adjust, I'll find a way. I know these things take time.
Me Time
Cognac 2 oz
Torani amer 0.5 oz
Lemon juice 0.5 oz
Simple syrup 0.5 oz
Saline (or a pinch of salt)
3 drops Mint
Lemon
Preparation
1 Place mint leaves in the base of a mixing glass and muddle
2 Add cognac, Torani Amer, lemon juice, simple syrup, saline, and ice
3 Shake well
4 Strain mix into serving glass over crushed ice
5 Garnish with mint and a lemon round
From
