Best Of
Re: My Husband, My Life, My Love, My Family, My Cancer
dear all. my apologies for not posting sooner, my abdomen pain getting worse and I haven’t had the energy to move around much. I will see the PA Monday, I’m not sure if the pain is a se of Xeloda or something more serious, I hope not…
Sondra’s passing has saddened me, crying almost every time I’m reminded of Sondra (Alexa).
Andreas messaged me before trip to Sondra’s parents last week. Today would have been her birthday, and they’ve planned a commemoration in her honor, he also mentioned that he would be sharing your beautiful stories and tributes with her family.
Happy Birthday to a beautiful soul. You are missed more than words can say 💔
Re: Bone Mets Thread
Has anybody had CA 15-3 and CEA jump but signatera go down? On kisqali since May. TM have never really gone down. CEA started off normal, increasing a little at a time for three months, but just went out of range for the first time. 15-3 this month jumped from 76-96, but my Signatera actually dropped from 12 to 3. Such a roller coaster ride. Was all happy about the Signatera and so was MO but then 30 minutes later, the TM came in. Ideas?
kmom57
Re: Bone Mets Thread
I would like to know from those of you who were on Verzenio for bone Mets when you had progression what was the next medication you were put on.
jen1
Re: Can we have a forum for "older" people with bc?
cowgirl13: Your grief is palpable so I am sending you a big (((HUG))). May his memory be a blessing.
betrayal
Re: So...whats for dinner?
Wally, Glasses can be very expensive and those heavy lenses are uncomfortable. Warby Parker which used to be online only now has stores in large cities including Boston. We've taken advantage of the $95 starting price (there are more expensive options) for DH's glasses. I currently have one nearsighted and one farsighted eye so can get by with my two ancient pairs of glasses. Sole is one of my favorite fish dishes.
Illimae, Sorry your restaurant meal wasn’t great. As a good cook you would have done a better job with the same ingredients. I hope the hotel stay with hot tub made up for the dinner.
Minus, After all that you definitely deserved a gin and tonic. I really like the taste of plain tonic water but the carbonation means I can no longer drink it.
Dinner tonight was lemon chicken for DH and scrambled eggs for me. I’m hoping a bland diet will help my mouth heal.
maggie15
Re: So...whats for dinner?
Wally, Sorry you have to have your labs redone sooner. I’ve run into problems with virtual visits being scheduled when they aren’t allowed by insurance rules. I’d love to stay home but don’t want to be stuck with the bill.
Eric, That chicken sounds delicious. My childhood memory of my mother’s pressure cooker exploding has made me reluctant to use one.
Carole, I join Eric in hoping your trip north has been uneventful.
My local appointment to schedule cataract surgery turned into a referral to MEEI since the ophthalmologist thinks my vision problems have some other unknown cause. I’ve had ultrasounds there since it’s adjacent to MGH. I guess it’s another opportunity to eat clam chowder.
Dinner tonight was salmon, summer squash and fries for DH.
maggie15
Re: So...whats for dinner?
Surprises today…
Went for my annual onco visit (DH's onco, since my just new onco has already left) and first, I was surprised that it ended up being a virtual visit. Like really….I could have sat in my pajamas this morning. Then, DH never followed up about his anitbiotic…seems the power outage never transmitted the order, so that was a waste and we may have to go back to the pharmacy tomorrow…and the onco was not happy that my M-spike went up so he wants labs redone in 6 months and possibly do a bone marrow biopsy. I'm quite unhappy.
We went out for lunch…had bison burgers. Dinner was leftover peanut noodles.
wallycat
Re: So...whats for dinner?
Wally, A dental appointment during a power outage is a new one for me. I suppose the dentist was able to ask your DH about any symptoms or questions he might have. I’m glad the trip wasn’t a waste of time.
Dinner tonight was sour cream and onion skillet chicken with mashed potatoes. I couldn’t eat much since the roof of my mouth is sore; I’m hoping it just clears up.
maggie15
Re: Can we have a forum for "older" people with bc?
Chris, please keep the Tippy stories coming. I really enjoy them. I decided not to complete the appointment follow up survey but will likely address some of my concerns in a portal message to the NP once I figure out a positive approach. I probably won’t complain about the NP’s lateness (this time) as I’ve been in that situation with sick kids. Bottom line is that I’m scared my health needs are being overlooked and I plan to tell her that.
Betrayal - my doctor still uses the draw a clock exercise which I think is ridiculous. DH’s Doctor does not use it but DH said he would have drawn a digital clock if asked 😀.
Canarycat - you have some awesome coffee shops near you. Are these in walking distance? I’m envious.
Cindy & Taco - I hope you have better luck with your MWV. I’m thinking this is not an appropriate visit for me. Perhaps a regular appointment for 15-20 minutes with bloodwork would be more productive. I know the providers have Medicare metrics to meet for percent of patients that do a MWV so I’m trying to be cooperative.
harley07
Stage IV bone meets- challenge with biopsy
Hi folks, its my 1st post here. Felt a bit positive after reading some of the long time mets survivors.
I was diagnosed with triple positive (high 90%) in 2020, stage 2. Did the full paclitaxel+herceptin and RT cycle. Have been on tamoxifen for last 5 years. In Jan this year started feeling bone pain and MRI showed fracture and doctor's asked for PET SCAN and it showed an active uptick on S1. Repeated MRI with contrast and showed multiple lesions but PET seemed to indicate only one active area. Did a biopsy..which was not too succesful, resulted in only 5% of the sample having tumor cells and within that ER was at 40% (stain intensity of only +2). Both PR and Her2 negative. So from a very strong triple positive have gone to low ER+. Oncologist was going to start me on letrozole/Kisqali...but another PET SCAN done a week before showed multiple uptick at newer location within spine and now rib. Now oncologist wants to put me on capecitabine. His reasoning is that in the last 3 months it spread to newer bone location and given that I am low ER this time, he wants this route. There is also the ongoing debate on whether the low ER could have been an artifact of the low volume tumor available from the biopsy. Wish me luck. Thanks for listening.
vijiya71