Dis Breast Cancer Survivors Part IV - GAGWTA

[ZellyB]

Hello all. It’s been quite some time since I posted an update but did want to share some good news. My oncologist switched me to Trodelvy several months ago. It’sa relatively new chemo drug for triple negative MBC that got approval back in 2020. My most recent scans showed reduction in tumor size on my bone tumors. Since my diagnosis back in March of 2020 that’s the first time I’ve had any reduction in those tumors. Encouraging news that it is effective for now and hoping it remains so for an extended period of time.

Hope everyone else is doing well during this October awareness month.

 

[Pea-n-Me]

Hello all. It’s been quite some time since I posted an update but did want to share some good news. My oncologist switched me to Trodelvy several months ago. It’sa relatively new chemo drug for triple negative MBC that got approval back in 2020. My most recent scans showed reduction in tumor size on my bone tumors. Since my diagnosis back in March of 2020 that’s the first time I’ve had any reduction in those tumors. Encouraging news that it is effective for now and hoping it remains so for an extended period of time.

Hope everyone else is doing well during this October awareness month.

That’s wonderful news, @ZellyB! We are so blessed with the new treatments that come out all the time thanks to all the research that’s done! Ongoing prayers that it continues to work well for you! Thanks for letting us know!

 

[luvmarypoppins]

ZellyB - great news and so happy you get to use the new drug. It’s great that new research benefits patients so much.

CaleCakes - we will be in Disney Oct. 29-Nov. 3rd. Dh, Ds3 (my own personal nurse lol) and Dh. Glad you are recovering enough to make the trip.

Pea-n-me - sorry you aren’t feeling well (saw your other post ). Hope you are resting and recovering.

@snappy - Wishing your dd all the best with her surgery. Is it the oldest or youngest?

Went to cardiologist and he was happy with the bp numbers so finally we have the right combo of meds that the surgeon will be happy about. He did say my l lower lung is not sounding the greatest.
Well the biggest news is finally we are going to Disney Oct. 29-Nov. 3rd. 2 nights at the Yacht Club (fainting at the price but Swan was sold out the 29th) then the Swan the rest. Ds already had a 2 day ticket and airfare credit from his covid canceled trip with the nurses. He also got us discount tickets from his union and I had enough southwest points to fly home free!
I will be sitting in the wheelchair a lot because I really don’t want to put any stress on this aortic implant. Dining was not the greatest. Slim pickings.

When I get back hopefully I may be able to schedule the sonogram and mammogram together since they are at the same place.
GAGWTA

 

[snappy]

Really glad to hear your good news, Zelly. Thanks for sharing. LVP, sounds like your cardiologist is on it, praise God your BP numbers are in range. And congrats on the trip. Glad you guys are going, it is usually good weather at that time. Hoping you will see Christmas decorations?

It was our older daughter (middle child) who had the surgery on 10/6. She had very good care at NYU Langone, doctors nurses, the facilities were the best I have ever witnessed. She is recovering at home with a back brace on when walking. Can move and walk well, but difficult to get comfortable in the bed or sitting. We stayed in NYC for 9 days and were able to see her have some improvement before we left last Thursday. At the time I wished we were able to stay a bit longer. However, early the next morning after we got home last Thursday my 92 year old mom took a hard fall at her facility, broke her right hip and her upper humerus near the shoulder in two places. Had surgery Saturday morning. Back in her room on Monday but cannot move in the bed or stand or sit up and is in a lot of pain that staff is trying to manage. Staff is having trouble changing her position in the bed. I think a hover lift and some sort of special chair is on order. She is on hospice, and her blood oxygen is not staying in a good range even with oxygen. Feeling kind of drained physically and emotionally with long stays in hospital rooms and the ER with mom. My sister is involved and my husband and extended family have been great support. Trying to count my blessings and all the wonderful years we have had with mom living a few blocks away from us since 1999. Truly a gift when she relocated from Charlotte NC to be near us after Dad passed in 1998. I thank God we have been near to each other since her decline which started about 5 years ago. Good choices made when it mattered.

 

[Pea-n-Me]

Sounds like things are going well for you, lmp. Have a wonderful time at WDW!

Snappy, saying prayers for you and your Mom and your whole family.

 

[CaleCakes]

Luvmarypoppins- how funny we will be WDW around the same time. Ill give a big random wave haha. The 29th we have half day planned for DHS and then HDDR in the evening. The 30th is a quick few hours at AK before our afternoon flight home. Going to be a busy few days for us! I feel energetic and I've been walking lately to build up my Disney Park stamina. I'm sure I'll take my fair share of breaks though. It's been 3 months since surgery, and my abdominal incision is healed but some days it still feels funny. I am hopeful I can do most rides without issue. I hear ya with ADRs- I did ok then ended up canceling some just for sake of time. I keep trying for Space 200 lounge but really I don't know when we will fit it in even as Epcot day I have a big list of booth items to try. I really just want to show my kids Space 200, the menu doesn't appeal to me.

ZellyB, so good to hear your body is responding well to the medication, and there has been progress in the right direction. Keeping you in my thoughts.

Wow snappy, you have been through a lot lately. Keeping your daughter and your mom in my thoughts.

I also meant to add last time I checked in that if anyone has questions about the surgery I had, pm me and I'll try to offer my experience. Maybe someone is reading that is going through similar but isn't comfortable so I wanted to offer that.

 

[Pea-n-Me]

So glad you have an upcoming trip @CaleCakes! Have a wonderful time!

 

[luvmarypoppins]

CaleCakes - I hope you and your family had a great trip. I think it’s good to take a medical break from things.

snappy - Prayers for your mom and your dd as well. That is the same hospital I was at, the main one in NYC, Tish. Was she there or Brooklyn campus? Did they tell you they have partner hotels that offer discounts for patient families?

Our trip was everything I thought it would be. Glad ds was with us. Great wheelchair pusher. Dh worked 3 out of the 6 days we were there. (On and off) He did spend time with us but said they dropped a meeting on him the day we got back, sigh, Up in the room working till 3 am one night. He got a cold from the ac at the Swan and I have a little if it. So some of the time he was sick and rested in the room, mostly after dinner. So now I need to wait a little for the sonogram so I don’t get a false positive from the lymph nodes.
Great weather except last night. Ratatouille and the Runaway Railway were too rough for my back and chest. Ds rode GOTG twice, once with my card. He only paid for himself once to go on ROTR. Food and Wine food was good. All our meals were good - Ale and Compass, Brown Derby, Steakhouse 71, Chefs de France and Kona. Got to swim in Stormalong Bay once. Disney sure is expensive these days!
GAGWTA

 

[luvmarypoppins]

Well that little cold landed me in the er and hospital Saturday at 3am. and stayed overnight. I woke up not being able to breathe.
Ds took me and Dh followed. They gave me iv steroids and breathing treatments. Tested me for 17 different viruses. Ct showed lung nodules so my pcp is going to ask the endo her opinion of a follow up ct, pet scan etc.
Also saw 2 mammary lymph nodes so she said next get the mammogram.
Always something,
Thanksgiving Blessings to all.
GAGWTA.

 

[snappy]

I am glad your pcp is being proactive, LMP. I hope you are feeling better by now.

 

[luvmarypoppins]

Well in my never ending story. Called for the mammo and the earliest appointment is Feb. 20!
Well I took it and just sent a note to my pcp on the portal. I asked her if that time frame is acceptable considering the lymph nodes they saw???
I think some of the delay is still because of the 3 radiologists who quit who refused to be vaccinated.
That is also a holiday for Dh. Oh well. Such is life.
Also again they ruined our appt. I was suppose to see the pcp Jan. 4. That is erased in the system and now it’s like Feb. 28. This happened with Dh too and she didn’t give a crap so I have enough other drs. to see too.
I also never heard from her if she talked to my endo about the sono or pet so I think I will send her a note too.
Advocating for myself as usual, sigh. It gets weary at times with 4 drs. Etc.
Don’t even want to think about Medicare etc. coming up soon or if I can still be on Dh ins.
GAGWTA

 

[snappy]

You are absolutely right, have to be our own advocate. Good luck with the insurance for 2023. I need to go check my Part D drug plan and make sure I get the one with lowest out of pocket.

 

[Pea-n-Me]

Well in my never ending story. Called for the mammo and the earliest appointment is Feb. 20!
Well I took it and just sent a note to my pcp on the portal. I asked her if that time frame is acceptable considering the lymph nodes they saw???
I think some of the delay is still because of the 3 radiologists who quit who refused to be vaccinated.
That is also a holiday for Dh. Oh well. Such is life.
Also again they ruined our appt. I was suppose to see the pcp Jan. 4. That is erased in the system and now it’s like Feb. 28. This happened with Dh too and she didn’t give a crap so I have enough other drs. to see too.
I also never heard from her if she talked to my endo about the sono or pet so I think I will send her a note too.
Advocating for myself as usual, sigh. It gets weary at times with 4 drs. Etc.
Don’t even want to think about Medicare etc. coming up soon or if I can still be on Dh ins.
GAGWTA

Seeing so much of this lately. I hope you can get appts a little sooner, lmp.

 

[luvmarypoppins]

Just popping in to wish you all a Merry Christmas, happy holidays and a Happy and Healthy New Year 2023.
Ds3 is working 12 hours Christmas Day on covid unit so we are getting together on the 26. Covid is getting bad around here. 93 patients, 144 staff and Dh has 18 at work. Trying to be careful.
Ds3 starts a new job end of Jan. Nurse practitioner full time in internal medicine at the hospital.
Hope everyone is doing well.
GAGWTA

 

[snappy]

Covid is alive and well, As Luvmarypoppins said above, be careful out there.
My husband, our friends from NY that we met up with in WDW, and myself all got it. My husband got it first, while we were still in WDW. Our friends left before we did, so they got sick after they got home, and I got sick the day after we got home. On the mend now, my husband tested negative yesterday and I am feeling so much better. It is funny, when you start to feel better after feeling so bad, you really appreciate feeling well.

Congratulations to your youngest son, luvmarypoppins on his new job!

and Merry Christmas to all!

 

[CaleCakes]

Belated Merry Christmas to all here.

Hope those that are dealing with covid and colds, and appointment scheduling issues are feeling some relief.

I had, what will hopefully be the last surgery for a long time, on Dec 9th. Prophylactic tubes and ovaries, robotic assist. It went well and I walked out of the hospital a few hours afterwards. Rested at home for the weekend and was pretty back to normal by the following Monday. Pathology came back fine, no concerns thank goodness. For the most part what I've been through this year doesn't linger on my mind, but then I get a call about scheduling an MRI to check on my pancreas and I have to remind myself this is something that will always be a part of me. One of the dumbest things I've heard from people asking me how i am is "so you're good now, right?". I never really know how to respond so to keep it cordial I just say yes. Does that happen to any of you?

My 5 year old and I caught a cold from her little classmates on the last day of school. We've been dealing with runny noses and a little cough. I am letting it run its course as it doesn't seem to be advancing.

Wishing us all health and happiness in 2023.

 

[ZellyB]

Happy New Year to all. I had scans again in early December and the treatment remains effective. So much so that I asked my oncologist if I could skip a cycle over the holidays so I could feel good. He readily agreed and said he was not concerned with the break. It’s made the holidays so much better. We are also leaving for our Disney World trip this Friday. My husband and one daughter are running the marathon this weekend. My other daughter and I will spectate. These trips are much harder on me than they used to be but with a scooter and DAS I can manage. Hope everyone is doing well and enjoyed the holidays!

 

[snappy]

Happy New Year to all. I had scans again in early December and the treatment remains effective. So much so that I asked my oncologist if I could skip a cycle over the holidays so I could feel good. He readily agreed and said he was not concerned with the break. It’s made the holidays so much better. We are also leaving for our Disney World trip this Friday. My husband and one daughter are running the marathon this weekend. My other daughter and I will spectate. These trips are much harder on me than they used to be but with a scooter and DAS I can manage. Hope everyone is doing well and enjoyed the holidays!

I am so happy that your treatment is working, and that your doctor gave you a break over the holidays. Enjoy your trip.

 

[Pea-n-Me]

Belated Merry Christmas to all here.

Hope those that are dealing with covid and colds, and appointment scheduling issues are feeling some relief.

I had, what will hopefully be the last surgery for a long time, on Dec 9th. Prophylactic tubes and ovaries, robotic assist. It went well and I walked out of the hospital a few hours afterwards. Rested at home for the weekend and was pretty back to normal by the following Monday. Pathology came back fine, no concerns thank goodness. For the most part what I've been through this year doesn't linger on my mind, but then I get a call about scheduling an MRI to check on my pancreas and I have to remind myself this is something that will always be a part of me. One of the dumbest things I've heard from people asking me how i am is "so you're good now, right?". I never really know how to respond so to keep it cordial I just say yes. Does that happen to any of you?

My 5 year old and I caught a cold from her little classmates on the last day of school. We've been dealing with runny noses and a little cough. I am letting it run its course as it doesn't seem to be advancing.

Wishing us all health and happiness in 2023.

Glad the GYN surgery went well. I ended up having all that, too. To the bolded, yes, but I think some of it is a mindset. Some cancer survivors, I think, just don't worry about things like that. A lot do, but not all. I happen to be a worrier so I’ve always worried myself. But others just sort of put it out of their mind. I realized this when I was talking to someone once with BC and I mentioned it. She said she wasn’t worried at all about it coming back or her dying from it because her mother and sister had had it and they were fine, so she believed she’d be fine, too. I thought, wow, that must be a blessing to be able to feel that way. So I guess it’s just individual. Hard to deny that testing brings a lot of it back, though. Outside of that it’s easier to not think about it.

 

[Pea-n-Me]

I hope everyone had good holidays.