Best Of
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
Re: Long term "high oncotype test" survivors
Thought I'd post another update since it's been another year roughly. I'm still alive, still sucking up oxygen on planet Earth, still speaking my mind. Gave up the motorcycle for the most part and took up sky-diving. Don't think that will last much longer. About to move on to boats and give that a try. And no, it will not be a slow canoe that I buy. Took up yoga this year which is great and supposed to help bone density. Counting on my little fingers the time to (early) retirement which is when life is going to get GOOD and CRAZY FUN!!!!! In short, life is beeeeyouuuuuteeeefulllll!
It's been almost 7 years for this high Onco DX score mujer. The high score is not a death sentence, it just means that you'll very likely benefit from chemo as compared to someone with a low score.
Really, life is much better since the cancer diagnosis. I'm happier, more content with myself, more willing to speak up and be heard, and I have whittled out of my life those poisonous people that drag you down. What's left is a great deal of peace and happiness and enjoyment of life. If I'd come back as a low score, I probably would have brushed off the whole cancer thing and gone back to my old ways. The high score is a blessing for me - it keeps in mind that I have to focus on what is important in life and seek out what I really want to be doing so that I keep myself in an emotionally good place which in turns leads to a good physical state and better survival.
Life is good. See y'all in another year!!
squidess
Re: Ribociclib/Kisqali with Letrozole - Any one on this combo?
Hi, I just found this forum and have been reading the post you brave ladies have made. I was diagnosed one year ago with stage 4 breast cancer diagnosed from the fluid they removed from my chest cavity. My shortness of breath turned out to be caused by breast cancer causing fluid to build up in the chest cavity, making breathing difficult. I was placed on Kisqali/Letrozole. Like many of you after a couple of pauses in the cycle, my dose was lowered to 400mg. After lowering the dose, I have only had to pause the treatment once. I find it very encouraging that at least one of you has been on this treatment for seven years! Keep up the positive attitudes and fight on.
Evelyn
Re: DCIS Stage 0 High Grade HR+
Hi All
Well!! I finally have a start date with my continued treatment for radiation. I called the Cancer Centre yesterday for the second time. She called me back this morning, and said
We have ONE more spot open tomorrow.. Nov 21!!
So I continue my journey now to healing. I don’t feel nervous, just relieved that I am starting.
And I see my surgeon today for another follow up.
Re: Change in friendships after cancer
It's hard to know what other people may be going through in their own lives. The first time I had cancer, two of my work friends also were diagnosed (all different types of cancer). One, who unfortunately had a short time to live, devoted her entire time to her immediate family and just a few close friends. One became the Cancer Queen and wanted adulation for being a Survivor with a capital S. and expected everyone she knew to tell her how brave and wonderful she was, every day. I never talked about mine because i figured everyone was suffering from cancer exhaustion. So since people who have (or have had) cancer each reacts differently, so do their friends and family.
Re: My Husband, My Life, My Love, My Family, My Cancer
Wow, I slept many hours last night, was heavily asleep from 5pm yesterday til 1 am. Got myself to bed and fell heavily asleep in bed for an extra 7 hours. I must have just needed the sleep last night after the insomnia day before. My throat is pretty dry fealing and sort of sore. Herceptin giving me a stuffy nose but not too bad. If need be, will take some expectorant and then medicine overnight to supress coughing.
Not sure about anything to do today. It is is trash to take garbage over tonight, need to check if just recycle stuff or actual trash to get out. Will take case of both. Other thing I want to make sure is done is to move the big boxes in front of closet near the door, take up less space.
Decided to get an inexpensive wig from amazon, round 30 bucks since it will gove the option to play with the style of it, also got some creamy blush, BB cream, concealer and lipstick. Not too bad a cost, better than sephora.
I hope everyone has a good day and in pockets for everyone as well.
Re: My Husband, My Life, My Love, My Family, My Cancer
Thank you so much for the kind words and information. You are much better at explaining than my MO - who still has not responded to my messages!
I have been experiencing double vision for a year and have seen the opthamologist, an ENT, and now have had two brain MRIs and several skull CTs. No discernable cause, no recommended treatment. After reading your post, I have looked for a neuro opthamologist, and the soonest appointment I can get is May, 2026!
Hope everyone has a day of smooth sailing and good test results.
eleanora
Re: DCIS Stage 0 High Grade HR+
Hi@sunnywithshowers
Thank you for that info!!
I will talk to my MO when I meet with him on Nov 28. I will find out if I qualify for genetic testing as well. That “may” also affect my decision to start Tam.
No phone call today in regards to radiation start date. I’m just so up and down!!
One minute.. I’m saying to myself.. it’s all good and they will call you and for the most part I have a positive attitude
Yesterday, I went with a friend to a greenhouse with a huge and beautiful Christmas display full of trees and decorations. It was a nice change of scenery for me.
Next.. I’m not in a good mood and just pacing waiting for the phone to ring
Was anything discussed with you about radiation afterwards? Or just the Tamoxifen
Positive vibes coming your way as well and thinking of you and you are preparing for your upcoming surgery in Dec. We are all on this journey together.. in our own ways but also definitely together, and that brings me so much comfort!! 💗
Embracing with strength