Best Of
Re: How long have you been Stage IV?
@alden722 Welcome to this thread! We have a great group of women who chime in often. So sorry to hear about you recent diagnosis. I am just 1 year out from MBC diagnosis after 15 years cancer-free following my original BC diagnosis in 2009. It's also very rough to go through all of this with young children. I am fortunate that this second go-around I am retired. LOTS of appointments to go to.
I will be getting my 5th PET next week. I just try to keep very busy and distracted as much as possible in the days leading up to the scan. My PCP was kind enough to prescribe me Ativan. I only take it 1-2x/week about 1.5 hours before I go to bed. It does relax me and I get a fairly good night's rest. Maybe that's an option for nighttime worry??
Regarding Zometa… MY MO and I are still on the fence about whether or not I need to start it. I had one bone met in my sternum that should be gone due to my radiation treatment in April. (Will find out when I get PET next week). My DEXA scan last year showed mild osteopenia in a few areas, but those were there 10 years ago and haven't shown remarkable progression. However, now that I am on anastrozole, lower bone density may occur more rapidly. I may ask my PCP (who ordered the DEXA scan last year) if I should get another one this year.
I hope someone can answer your Zometa question. I do know there are lots of other threads that discuss Zomota, which have been helpful to me in trying to determine my path with this drug.
Wishing you all the best!
Hugs, Pam 💗
Re: Bone Mets Thread
Hi all - Hope you are enjoying your day :) I am not sure where to post this. To make a very long story short, I have bone mets dx late 2023. I am doing well - nothing active on my last 4 scans and as of yesterday tumor markers still well below normal - thank goodness. I am on verzenio, anastrozole and xgeva / zomata (I will explain why both) My reason for not knowing where to post this is - My mets were discovered when I fractured 2 of my cervical spine bones. C3 and C5. I had a fusion from C2-T2 and 5 days of high dose radiation after the surgery. The side effects from the radiation to the neck were brutal for a few weeks after but then I thought everything healed because I went back to having no issues eating or drinking etc. In April of this year (so over a year after my radiation was completed) I started struggling to swallow and was in a lot of pain in my throat constantly. My Rad onc blew me off and said there is no way this is from radiation and to call an ENT. Two months of misdiagnosis ensued and during that time I took 2 rounds of antibiotics, 2 rounds of antifungals and Antacid type meds. Finally my Gastroenterologist said she would do an endoscopy. Turns out I have what she is calling a "radiation induced ulcer" right under my voice box. Which explains why the ENT never saw it when they scoped my sinuses and the higher part of my throat multiple times. My Rad onc is finally taking me seriously and has me on a medicine called Pentoxifylline as well as high dose vitamin E. She also suggested Hyperbaric Oxygen Therapy. I met with the team that does HBOT at my local hospital and although it's a big commitment (2 hours a day for at least 30 days) they think it can help. The meds "might" be helping too but I am also now having another issue which is making everything confusing. Whenever I do get some food down (I have lost 11 lbs since April. I am on a liquid diet at this point) my jaw really hurts too! I am now worried this is from Xgeva or Zometa? I had to do one dose of Zometta in May of this year (which I had never done before) because my new onc couldn't get Xgeva approved by my insurance. That one round made me sick for 2 days and honestly my jaw hasn't been the same since! I know this is a lot but if anyone knows anyone who might have had a similar situation, tried HBOT and it worked for jaw necrosis or even radiation related ulcers or things of the sort - or can direct me to a different thread - I will take it. I am at a loss!
Re: Bioidentical hormones..is anyone taking after breast cancer?
I started on estrogen about 9 months ago. It has made a world of difference for me. I feel 90% back to normal, pre-cancer. I'm sleeping again and my moods have mostly stabilized. I'll be 10y out from my initial diagnosis in October.
For reference- I was diagnosed on routine mammogram at 46y with stage 1, ER+, PR+, Her2-. I had a nipple-sparing double mastectomy with immediate reconstruction in 11/2015. I was on 10mg tamoxifen for 4.5y then had a total hysterectomy. took anastrozole for about 2y, switched to exemestane for about a year and then switched to ospemifene for about 18m. The AIs were very tough meds- lots of body aches, hot flashes, mood swings & v low energy. After doing a lot of research I decided to discuss estrogen with my oncologist. She wasn't thrilled but referred me to endocrinology. It has been life-changing. I feel like myself again.
Re: How long have you been Stage IV?
@alden722 welcome to the thread . I can’t help with the zometa as I don’t take it but just wanted to say hi and to say sorry you are here as well. I was just diagnosed right before you in Nov 2024. My heart goes out to you going through this with 3 kids still in school. I’m 54 and my daughter is 29 this year although I did have another type of cancer previously at 38 ( Hodgkin’s lymphoma) and was cancer free for 15 years before this stage 4 diagnosis. Keep posting the ladies on here are wonderful to talk to.
ssales13
Re: Night sweats and acupuncture
@waves2stars. I am waiting to get scheduled. I have tried so many different things. This is the first time it has been suggested. Most drs prescribed meds. I just wantbto know if it has helped. Google had mixed reviews.
Re: My Husband, My Life, My Love, My Family, My Cancer
So glad to hear that you have some pain relief. Think of you and everyone here often, but many days don't have the energy to post. I have always had high sensitivity to hot weather and I think Kisqali makes it more severe. Hibernating most days with shades drawn and lots of ice water and ice pops.
Hugs and healing thoughts,
Eleanora
eleanora
Re: My Husband, My Life, My Love, My Family, My Cancer
@candy-678 It is nice for you to check in. I don't post much either but read everyday. I will be praying for your scans next week. The scanxiety is real and we all could use some more peace. Many US pastors of small congregations have to pick up extra work now days as church attendance and giving diminishes. It is sad. Our son is a Pastor and so far his wife's pay as a nurse covers the rest if their living costs. We pray that continues. His second "job" is taking care of the three kids while she is at work. My arthritis has reared its ugly head too but I think it might also be a result of adding a statin to my medicinal arsenal. The Orserdu has a se of increasing cholesterol so the statin is a preventative. I see my PCP later today so I will discuss this with her.
It will be hot here in Colorado again today with no rain forcast. Other than a dr trip, I will stay in.
Keep safe everyone.
Re: Zoom Meet-up for Those With MBC: Place to keep chatting
@tanya_djamila We miss you but its great you have grandson and mum visiting. All the best with the bathroom works. And looking forward to see you soon.
@kbl that's a beautiful place you went for your birthday. I hope you're feeling better since Monday.
Blessed week all. Love, hugs and prayers🤗🤗❤️❤️
Re: Starting Chemo July 2025? Gather here for support!
@mo0208 Hello & welcome! I feel you on the anxiety leading up to starting chemo. I felt it ramping up beforehand, too. I am also doing TC chemo, had my first infusion on July 1. I'm doing 4 rounds with 21 days in between, give or take, depending on how things go. Everyone kept telling me to hydrate really well the day before, and then day of and thereafter throughout chemo to flush it from my body. I decided to fill a water bottle that is marked 800 ml on the side and am trying to get 3-4 of those in each day!
I felt a lot of relief to get the first infusion done, but in the days after that, I felt the new anxiety of watching and waiting to see how my body handles things. I keep saying, "I know what to expect in terms of side effects (bc they give you the whole list!!), but I have no idea how MY body will respond to any of this."
I used ice socks and ice mittens to hopefully prevent neuropathic pain in my hands and feet. My hands were painfully uncomfortable from the cold at a few points, but it eventually lessened and so far, my hands and feet feel good, so I'm hoping it's worth it! One could also use ice packs with towels, just bring a small cooler with several ice packs to change out while the chemo drugs are infused. I didn't ice during the steroid or any of the other preliminary things given via IV, only the chemo drugs and while I had to sit for an additional hour with my cold cap on after the chemo drugs were infused.
The first day after infusion, I felt quite energized from the steroids - they gave me dexamethasone and it amps me up and prevents me from sleeping :( I had to go back the afternoon after for a shot (Fulphila, aka Neulasta or pegfilgrastim) to stimulate WBC) and I honestly think that has been worse than the after-effects of the chemo. I had very bad bone pain/aches and muscle aches — felt flu-like for 3 days or so after. They told me to take Claritin to help, and it helped, but I think for this next round, I'm going to refuse getting the shot so long as my blood work and WBC counts are good, so that I can see how my body handles things without the bone pain and body aches.
I'll be thinking of you as you approach 7/10 & sending positive vibes for a smooth experience. Do you have someone going with you for support? My sister-in-law went with me and that helped so much. If you have other questions, don't hesitate to tag me!
