How long have you been Stage IV?

Hi all! Home from our trip and happy to say we had a great time and I stayed healthy the whole time - woohoo!! We were in Vancouver, took cruise to Alaska and Glacier Bay and ended with a week in LA with family. There are no words to truly describe the majesty and beauty of Alaska and Canada’s mountain ranges and glaciers. Pictures don’t do it justice. We saw lots of wild life including bald eagles, bears, whales and husky puppies 🥰 so cute! So happy I went and didn’t hold back due to fear of getting sick. We kept from crowds, I wore masks as needed and used common sense. Great memories were made! My mantra : While I can do, I will do!

@livinglifenow Pam, I hope you had great folks auditioning for your play! I’ve never met a theatrical director before and am happy to know you now! Hope the rehearsals go smoothly! Keep us updated! Also hope your side effects get to a tolerable state and do not hinder your exciting work. 🙏🙏

I’m on Letrozole and Kisqali - my side effects are tolerable but still difficult. My main bad one is a cough with sinus congestion that may not be a side effect but a symptom of the cancer in my lungs. I’m really not sure and my docs aren’t sure either. When I have a coughing fit in public, I have to step away from people or leave the area till coughing ends and I am breathing normally again. Not fun. My other SE’s are mainly fatigue, terrible skin dryness and hair loss. Considering how tolerable my side effects are, I feel blessed at this time. I know this blessed period can end just like that. My well wishes go out to you all who are having a hard time with side effects!!

I'm having my first scans since diagnosis done on July 16th - time to see if the meds are working! My first ‘scan anxiety’ time - just hard knowing this is going to be something I have to go thru for the rest of my life.

Wishing everyone a happy long holiday weekend! Stay safe out there! TTFN! juliana xoxo

@EddieJ Juliana, it sounds like you had a fabulous trip. So glad you stayed healthy. And, you are so correct about the beauty and majesty of that part of Canada and Alaska. Photos can not do it justice.

Praying your scans on the 16 are all great. I have an ECHO and brain MRI next week and a PET/CT on the 14th. 🤞 I have had all of these several times before. You are so right about realizing this is the new normal.

I also understand your coughing fits. I developed a chronic cough after a “super cold” 3 1/2 years ago. It is way better than when it started, but just one molecule of something can irritate my throat and a coughing fit ensues.

Overall feeling pretty good though.

Hope all of you have a fabulous 4th of July!

🇺🇸

Hugs, Pam 💗

@EddieJ Juliana, I know what you mean about seeing scan results before your MO appointment. That happened with my PET the end of March. I knew the results meant either changing my treatment or having radiation. I immediately called my MO and asked for her to call me. My appointment with her wasn't for another week. I also called the RO to see if I could get an appointment with him. My MO then called me and recommended radiation. The RO got me in the next day and we we discussed all of the options. It was a crazy few weeks, but everything got done very quickly.

I scheduled my next PET (July 14) for the day before my MO appointment and infusion treatments. I don't like having PET and infusion back to back, but felt it best to have the results prior to my next infusion in case there needs to be a change in treatment. Fingers crossed that everything is stable and I can continue with what I am doing.

Not sure if I mentioned that my PCP strongly suggested I take Pantoprazole (40mg) 2x/day for 8 weeks. I was just tapering off 20mg/day of Nexium for 7 weeks. He thought my heartburn may need extra protection. I have now been on the Pantoprazole for just about 10 days. The first 3-4 days I felt really rough, like all my anastrozole side effects were greatly intensified. However, now that I've completed 10 days, I think things are normalizing a bit and I am feeling a bit less heartburn. (I believe the heartburn is caused in large part by the anastrozole!).

Anyway, praying both of our scans show good results! I will be thinking of you.

Hugs, Pam 💗

@EddieJ Juliana, I just returned from my ECHO and BRAIN MRI tests (3 hours round trip to/from hospital) and the results were already in the portal. GOOD NEWS: ejection fraction of 60-65% and no tumors or anything in the brain.

However, I did have "mild periventricular and subcortical white matter areas of T2/FLAIR hyperintense signal consistent with chronic microvascular disease." This was not mentioned in my brain MRI a year ago. Apparently, chronic microvascular disease, also known as small vessel disease, is a condition affecting the tiny blood vessels (arterioles, capillaries,and venules) that supply blood to tissues. It results from damage to these vessels over time, often due to chronic conditions like hypertension, diabetes, or aging. This damage impairs blood flow, leading to reduced oxygen and nutrient delivery to organs, particularly the brain, heart, kidneys, and eyes."

Sounds a bit scary to me. Could explain my mild headaches, although I had these last year when I had my first Brain MRI done. As far as I know I have none of the factors that might contribute: diabetes, high blood pressure, high cholesterol, obesity, etc. It makes me wonder if my treatments, especially the anastrozole, might be a contributing factor. Will have to discuss with my MO next week. Also, there is a chance my cholesterol has gone up since last year due to anastrozole as well. Another drug? Yay! 🙄 However, if my constant mild headaches decrease it might be worth it. Now I need to get cholesterol tested again. It's been almost a year.

Have any of you had Brain MRIs with these finding? I may have to start a new thread to see if others have had this finding on their Brain MRIs. Overall, very happy with my results. Now just waiting for PET next Monday.

Have a wonderful evening, everyone!

Hugs, Pam 💗

@ssales13 Stacy, thanks for your well-wishes. Hoping all goes smoothly with your Xgeva shot. Best to everyone!

Hugs, Pam 💗

@EddieJ Juliana, it looks like you are HER2 negative given your treatments. I am HER2 positive, which is more likely to spread to the brain, so that is why I am having brain MRIs regularly. Now that they’ve discovered “white matter” I’m sure I will continue to get them on a regular basis. Yippee! 🥳 NOT!

Just need to figure out the cause so we can treat it.

Lovely morning here. Must get out and run some errands!

Hugs, Pam 💗

@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 💗

@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.

@alden722 so sorry to know about your diagnosis. I was diagnosed January 2024 with bone mets, at 38 years old, after 3.5 years of my stage II BC diagnosis. No kids though.

I'm not on zometa so I cannot attest to that, but I wanted to send you to say it gets better by time. The first year was so difficult on me, and I remember reading this article and not believing that I can ever have a 'normal' life, but it's true, it does get better by time - or we adapt https://www.breastcancer.org/types/metastatic/life-with-metastatic/advice-for-newly-diagnosed

Big hug <3 I hope your PET scan turns out very good and you find the support you need to handle the anxiety that comes with it. I still get it 1.5 years into the diagnosis with stable good results.

@katedsweet1 Thanks so much for your inspiration, and I hope the meds work for twice as long or longer.

@alden722 So happy you found yourself here! The women on this thread are so warm, supportive and knowledgeable! They’ve kept me sane since my de novo diagnosis 7 months ago (wow, that long…). Stay connected! You don’t have to go thru this alone. @katedsweet1 Thank you for posting in! I love hearing from those like you! I fully agree with @tougholdcrow - you are an inspiration. I raise my glass to you - May you last long and strong! 🤗

I saw The Lumineers last night. Such a great concert! Late night but so worth it. 🎶🎶
xo juliana xo

I prefer to see my results right away so that I am prepared with any questions I have for my oncologist.

@alden722 I like to know the results before I see my oncologist but I certainly understand the anxiety it brings even opening up the results. I pray that you have great results. @livinglifenow pam, praying for you as well that your PET scan is great and that your infusion and Doctor visit are good as well. I have my oncology visit and xgeva shot this Thursday.Hope you all have a wonderful evening. Take care

hi all! @alden722 i agree with others about reviewing results before seeing my oncologist. This way i can compile my questions and have them answered rather than having to reach out afterwards when not in person. I am getting my PET scan Weds. and will see my oncologist on Monday. We will review the results probably on Sunday.
@livinglifenow Pray you have good results!! Hope the play rehearsals are going well too! @tougholdcrow so glad your markers were good - I hope to one day be able to say the same! Mine were stable this month… wish they were lowered but I was on 400 Kisqali this past month, not 600 so have to be patient. We’ll see next month!

Hope I have good news to post next week!! xo juliana

@ssales13 @alden722 @EddieJ @tougholdcrow @chicagoan Well, I got brave (practically hyperventilating) and printed out the report. Then put a piece of paper over it so that I could slowly lower it and look at it one line at a time. Everything looks great! My only concern was the part that said: "Musculoskeletal:
Redemonstration of sternal metastasis, with interval decreased associated hypermetabolic activity now demonstrating max SUV of 2.8 compared with 5.7 on the prior."

After a bunch of research, I discovered that it is highly likely that this SUV of 2.8 (very low) could be post-radiation inflammation and/or bone remodeling. Also, my CA 15-3 today was 20.5. Ever since it got within normal range it fluctuates up and down a bit, but not much. Another good sign! Here's hoping the next PET doesn't even show inflammation!!😄

@ssales13 I will be thinking of you on Thursday and @EddieJ on Wednesday. July seems to be the month for scans. Best to all! Now, off to rehearsal!

Hugs, Pam 💗