De Novo Stage IV
Comments
-
Sorry tinker....No one wears masks anymore around here. But I always will and I will continue to hibernate forever, I guess. I am recovering from a compression fracture in my L1. And broke my ribs for no reason 3 times in a few months 3 years ago.
So a cough is something that I desperately am trying to avoid.
I hope that you recovery quickly!
0 -
Denny123: Thank you for the well wishes. I will be in hibernation mode for another week, but still have no idea how I got Covid. Too late to belabor but just wanted to press upon the seriousness of Covid. Like you said no one wears a mask anymore. I’m afraid the fall/winter season will bring on a high surge again.
Sorry to hear of your compression fracture.In your long history, did you or do you have bone mets? Just wondering if you’ve been on Xgeva or Zometa?
Stay safe and heal well,
0 -
Tinkerbell, I’m so sorry you got Covid. I hope you start feeling better every day.
We are watching Ian as it’s supposed to hit very close to home as a Cat 3. Right now it’s moving a little south, so good for us but not the people south of us. Charlie did the same thing. He was aiming straight for us and ticked low enough to hardly do anything in our area. If it keeps ticking south, we will be in the west side much more favorable.
0 -
KBL: Thanks. Watching the news trying to pinpoint the target area for the hurricane must be scary for you and your loved ones. Will pray for Floridians.
0 -
Took a bus for the FIRST time since late 2019. I did not want to drive into downtown Vancouver, the traffic, the cost of parking. I can do a return trip on the same Seniors' ticket. I wanted to by some trim and ribbons to make a hand made wedding card for the son of a friend of mine. Masking was maybe 30% - me being one of them. I thought maybe I should have double masked. Am I "good" if nothing shows up in the next 5 - 14 days? Canada has an excellent vaccination rate of about 84%. Doesn't mean I think I am invincible.
Hoping everyone in the path of Ian will be okay.
Denny123: Do you have osteoporosis? Maybe that explains the ribs. and the fracture in your L1
0 -
I hope you had a great time on your trip elderberry. It’s so good to get out and do something fun.
Thank you, Tinkerbell and elderberry. The storm is tracking a little farther south than expected. I’ve lived in the area for 53 years, and we’ve had our share of scares, but I’m so grateful that nothing has been a direct hit to our area since 1921. We will have lots of wind and many inches of rain, and probably will lose power for an extended time, as Ian is a slow mover, but the winds will not be in the 100s where we are, thankfully. I feel for those south of us.
0 -
DeNovo or de-ranged 😅? I will be doing a long term sub assignment for the month of October. 5th grade and the other 5th grade teachers are my former colleagues so I will have lots of support. I’ve taught high school, kindergarten, 1st grade, and 6/7th grade summer school but never 5th. I’m actually excited to have the challenge and sharpen my skills, even in retirement. I can’t work on Tuesdays since I have commitments to my grandchildren so the class will have me 4 days a week and a sub for me once a week. They also offered me a nice little bonus 😊 as they pay their retired teachers more than any other subs because we can actually teach, know the tech systems, student apps, etc.
I imagine being lured into the classroom until the day I die 😉.
PS: I plan on sleeping the entire month of November
0 -
Thanks for the scan support. My stable mets continues. I feel so lucky and I’m trying not to waste this time of relatively good health. My MO said I don’t have to do scans again until next year, which is very encouraging. Even though the time passes quickly, it feels much better than having to get checked every 6 months. I wonder how others feel about being NEAD? Is there anything that you tryto do while NEAD to push MBC into the background of your life?
tinkerbell107, I hope you are feeling better from Covid now, and it was surely a blessing that your father didn’t get it.
denny123, I hope your fractures don’t cause you too much pain and discomfort. I imagine that any quick movement is painful.
kbl, I’m watching the storm and praying it doesn’t become a cat 4, but a cat 3 can still be awful. I have family and friends in FL, so these storms always make me concerned.
0 -
elderberry, properly fitting n95 or kn95 is much better than double mask. It needs to be tight enough you don't smell much around you. Pre-vaccine, way back when they convinced us that cloth masks do something, I double masked with cloth over surgical at work and still caught covid, during Jan 2021 surge when close to 50% of neighborhood got it. My students' families all traveled, and at that time, the littlest weren't masked, no home tests. Families got home and sent their kids off to school the next day. Within a week, every school had multiple classrooms closed. (My youngest stayed virtual) I must ride subway everyday, and masking depends on the time of day and the crowd. Tourists don't wear them. 50's women going to work do.
Tinkerbell, I hope its not too uncomfortable. No matter how careful you are, it depends a lot on how careful those around you are. See above re: travellers.
Exbrxgrl, yay!!!! That sounds fun! Its always good to have a little challenge. Short term is great.
Kbl, I see its now a 4. Thinking good things of everyone who may be affected.
Cyathia, congrats!
0 -
This storm is going to be a doozy for the people south of me. The track is south and east, but the rain and some winds may still knock out power of my other house. I have the windows open in north Florida, where it's 64 degrees and breezy. I'm actually cold and sitting under a blanket. We have a lot of trees on our property, so I'm sure my husband will be picking up branches that fall, even if we don't get big winds here. So grateful. I'm sorry for any of my south Florida friends, who didn't have as much time to prepare because they kept telling us it was heading for the Tampa Bay Area, exactly what Charlie did.
0 -
My three year Cancerversary was yesterday. Its so hard to believe how fast time has passed, but I also felt very sad thinking of all those supportive ladies from when I first showed up so scared, and how many of them have passed.
Doing really well on second line and I am awaiting confirmation of an early December surgery date for a very short adjustment/reduction of the non-cancer breast.
0 -
Congrats, sondra! It doesn’t get easier to deal with the loss of our bco friends. After being a stage IV member for 11 years, each loss is still felt as keenly as the first.
0 -
Sondra, I agree. I’ve been on the site since 2019, and it’s so hard to watch as others pass. I’m also on my second line and doing okay. I’m glad you’re doing well.
0 -
Hi, I just wrote on the Brain Mets thread but I wanted to check in here, too. Today is my two year anniversary of diagnosis. I am celebrating that fact, especially given I have had both leptomeningeal disease and then intramedullary metastases (spinal cord) in the span of two years. Enhertu is currently the treatment working for me and I am searching for what's next. (Though I hope to stay on Enhertu for a long while!)
I am happy to be celebrating another Halloween with my two girls, who are now 4 and 7! My next scans are coming up in late November and I hope to have good news for Christmas as well. Until then trying to enjoy every day.
I hope everyone here is doing as well as can be.0 -
Superdenovo, I’m sorry you’re going through this and at such a young age. I can’t even imagine. I want to make sure you know there is a Zoom support group for young MBC people. I’m thinking of you. I’m so glad Enhurtu is working, and I hope it works for a very long time.
0 -
Superdenovo...so sorry that you are going through so much. You will be in my prayers and give those little girls a big hug for me!
0 -
Superdenovo - congratulations on your two year cancerversary. It sounds like you've had a rough ride. I hope the enhurtu works for a long time. Extra hugs for your girls.
0 -
Congrats Superdenovo on 2 years! I remember when you first posted and thought well, it doesn't get much worse than that, as if de novo wasn't a kick in the gut in the first place. And lepto in there as well! So glad to see you are still engaging with your girls and looking forward to the holiday season. Best wishes for good scans and continued Enhertu success!
0 -
superdenovo, at first glance I thought your name was for how like a superhero you are. That's a lot. Have a fun Halloween with your girls, always my kids my kids FAVORITE holiday!
0 -
Thanks for the kind words everyone! I will be sure to give my girls extra hugs today!
0 -
I’m not posting in a lot of places lately. I read along every day but really don’t have much to say.
I am having a brain MRI next week. I had one a year and a half ago that showed skull mets, and I’ve been having a few zings into my head, so I asked for peace of mind to have another one. I don’t think I have brain mets, but with sneaky lobular, you can never say never.
My daughter went ahead and got genetically tested a while back, which I thought she didn’t need to do because I didn’t have any genetic mutations. I’m sure glad she did. I didn’t even think of my husband’s side. She came back with a Chek2 mutation. I was so shocked. Since she had that and I didn’t, I knew it had to be my husband. We had him tested, and of course, he came back with the mutation.
My sister-in-law knew we had him tested, and she actually thought it might come back negative. I made a funny comment that if he came back negative, I might have some ‘splainin’ to do. Lol. I’m trying to get her to test because she has a 50% chance as well.
My poor daughter and genetics. My husband gave her the Chek2, and I gave her a genetic blood clotting disorder. I pray she never has to deal with either one.
I hope you’re all doing well.
0 -
Kbl:
Will be thinking of you next week and hoping for good results from the Brain MRI. I have a good friend with lobular so have some insight into what you're dealing with.
Hugs,
Eleanora
0 -
KBL - I think it's good that your daughter got tested. My genetic testing was also negative, but my MIL died from BC. Even with that in mind, the genetic counselor didn't think it was necessary for my DD to be tested. Personally, think knowing is better than wondering.
Re your SIL, I really think some people just don't understand basic genetics- either that or she was incredibly rude. Either way, smh.
Crossing my fingers the zings you're feeling are easily explained and your brain MRI is progression free.
0 -
Thank you, Eleanora and SeeQ.
Eleanora, if you don’t mind me asking, can you share where your friend’s lobular is, bone only or more places? I’m sorry you’re both dealing with this.
SeeQ, I don’t think my sister-in-law was being rude, I think she just doesn’t want to test herself because my husband’s mom died of lung cancer. I’m hoping she does it for her sons’ sake, but we can’t force her.
My daughter did the Color test. It was $249, I think. Once my daughter found out, we only had to pay $50 for my husband’s. Now his siblings can be tested for $50 as well. If she wants to know, I think it’s a great option. It’s Color.com. My husband just had to spit in the tube they sent. It took a little over four weeks.
0 -
Good point KBL! the prices have really come down, hopefully insurances will change their criteria as well so it is covered for people under 60.
thinking of you for your MRI
0 -
Kbl
She has 4 mets in various parts of her spine.
0 -
Thank you, nkb. I'll post back once I have the results.
Thank you for letting me know, Eleanora. I hope she stays stable.
I have a screened porch attached to my house in the backyard, so I can see the deer and turkey, as we have a corn feeder that goes off twice per day. We do not hunt. It's so nice for them to come daily. A few months ago I mentioned him building me another screened-in area out in the yard so we can get a full breeze because the other one is blocked by the house.
It took him a few months, because he did other projects in the middle, but I absolutely love it. The worst part for him was adding the screen. He hadn't done that before, and, once again, he did a wonderful job. I thought I would share it so I can give him credit. I'm so happy I have such a handy husband. He built it with no plans, all by just knowing. It has a concrete floor, which he did himself, along with a friend helping, a ceiling fan, is all screened, so no bugs, and a plug if I need to charge something or use my computer.
The deer came around to the front of the house after they ate.
0 -
kbl, your screened in area in the yard looks awesome! A wonderful place to enjoy the outdoors! Enjoy!
0 -
KBL - there's another thing our DHs have in common. I can't tell you how many times his handyman/electrician/mechanic skills have saved us money or otherwise made our lives easier. Your freestanding screen porch looks amazing. We have seen deer, fox, and of course geese at our lake house. We recently put a trail cam out to try to see an armadillo that was wreaking havoc on the grass. Shortly after, we saw evidence of a skirmish (or three) on the beach and haven't seen the armadillo since. The tracks suggested bobcat, but we didn't catch that on camera. Too bad.
BTW, I'm glad your SIL wasn't being rude intentionally. It just surprises me when people don't realize the impact of what they're saying. And, tbh, I'd have to include myself in that group. I have no doubt that I've stuck my foot in my mouth more than once. :-/
0 -
Thank you, DivineMrsM. It is very peaceful here. We had this house built in 2016. I'm so glad we didn't wait.
SeeQ, it is so nice to save the money, and if they like what they're doing, it doesn't feel bad to them. I'm the opposite of him. I hate physical labor. Lol. One of our neighbors saw a bobcat recently. Our neighbor let their little dog roam the neighborhood, and he went missing last week. My husband tried to tell them he was probably going to be taken. He was very friendly, and would even go up to deer. I’m sorry for them, but it’s not a good idea. We also have coyotes. The worst part is not knowing what happened to him.
0
