Best Of
Re: Triple Negative Stage IV
@scgal08 @cookie54 so nice to see you / hear you on zoom today! I hope you both will continue to join once a month, if it works for your schedules. It was so happy making to share. We go through so much. And yes, waving the white flag sometimes feels very inviting… I’ll keep you posted on the clinical trial for skin Mets progression.
Rita - sorry about the skin and liver progression, that’s always tough I know. Let us know what your MO suggests. We are here for you.
Hugs to all ❤️ have a lovely evening. DH and I are going out to eat and for a walk along the waterfront later. Taking advantage of the good weather and todays manageable fatigue. 🤗
Re: Stage IV MBC Fitness
Evening all, you gals are an inspiration! I had been working out 5 days a week via YouTube videos (Aim fitness and SeniorShape) for the last two years. And walking … love walking. But since my last radiation treatments on my underarm and shoulder, it’s been a slow recovery with just being able to add some simple range of motion as my skin slowly heals. Just gently getting back to thinking about moving more again and walking more . Pickleball lol…that’s awesome. After reading through this thread ..I’m motivated to move more!
Re: Exercise "Better than drugs" New ASCO Research from Other than BCO
Olma - I noticed you have the Kierkegaard quote about walking. I've seen that one before and it sticks with me, especially in regard to all this cancer stuff. I used to do more diligent fasting too, but I'm gradually slacking off and want to tighten that back up again. I do intermittent (overnight) fasting and very, very rarely 24 or 72 hour type fasting. I try to have an 8 hour "eating window", but I've gradually let it slip to where I'm stretching that out too much. I actually had wanted to shore it up to 6 hours, but instead of making things tighter, I slacked and now I've got more like a 9 or even 10 hour eating window and I don't like that.
I too love the idea that if you have to, you can just walk around your house and get benefit. After I had my mastectomy, the surgeon told me he wanted me to walk something like 5 or 6 times a day (to prevent blood clots). At that time, I had no idea how I would do that and realized the only way would be to walk around my apartment. I did and I think it made a difference. Like you, I've also heard that you can break up the walking into short 10 minute spurts if a longer time period isn't possible. So far I've been able to do 40-60 minutes outside with no real trouble, but I keep it in mind that if it gets to that point, I could go for several short walks every day and still get the same benefit.
It looks like you've done really well. Just keep on walking like Kierkegaard says. (Actually I think the original quote is something about everything be alright as long as "it's in motion", but I think it gets the same point across either way.
Re: Bone Mets Thread
Thank you so much for your kind response. I’m so sorry to hear that you’re in a similar situation, and that you’ve been concerned about your treatment for nine months. I truly hope that you’re able to get a good plan in place soon.
I think I’ll also be doing some type of genetic testing to see if a mutation is driving this. I have a BRCA2 mutation, but we need to figure out if anything else has developed. How long did it take for you to get results from the genetic testing?
I really appreciate your kindness. Sending lots of support your way.
mc22
Re: Kisqali side effects and timing
Day 1 was yesterday. I woke up this morning with my vision being distorted. I could see but things just didn’t seem right. My head feels strange too. Wearing sunglasses helps in the bright sunlight. Has anyone experienced this?
Re: Kisqali side effects and timing
@norah2024 Thank you for your reply. Vision seemed to improve but stomach cramps and extreme fatigue set it throughout the day. I’m hoping tomorrow is better.
Re: Mets to Pleura
I had breast cancer right chest in 2015. 7.5 years later I had pleural mets. One thing I learned is the more fluid they take out the easier a thoracentisis is. I have been one Ibrance and hormone blockers for 2.5 years and doing well. The one thing I have learned about cancer is there are no guarantees. I was told I was cured in 2020. Hang in there once you get started on treatment things will hopefully get better. Do not google pleural effusion. The information is out of date and you will get more upset.
Re: Bone Mets Thread
@mc22
I feel for you deeply, as I’m going through almost the same situation — the main difference is that my progression started about nine months ago.
Since I began my current treatment combination — Kisqali, Faslodex, and Xgeva — I also experienced a recurrence in two areas. From August of last year until now, I haven’t seen a major change in the uptake in those areas, but my tumor markers have been steadily rising.
This month, my CA 15-3 result was 130, a jump from 105 the previous month. And with some pain in the middle of my back, I had a feeling the disease was progressing. An MRI confirmed the appearance of a new lesion in one of the thoracic vertebrae.
My doctor’s plan is to go for radiotherapy for the T9 Vertebrae
And to continue with the current treatment until the genetic testing results come back. He told me that depending on the results, I have two possible paths:
- If the results are positive for any targetable mutation, I will be switched to a drug specifically designed for that gene.
- If the results are negative, we’ll proceed with a PET scan to check whether the spread is limited to certain areas in the bones or if it has reached other regions.
The proposed treatment if further spread is confirmed would be Enhertu.
While the oncologist suggested starting with radiation therapy followed by a pet ct scan,
the radiation specialist recommended doing the pet ct scan first, then deciding where to apply the radiation therapy.
I’m feeling uncertain between the two approaches.
I truly hope I won’t have to change my treatment — just the thought that my options may be running out causes me a lot of anxiety.
I hope this information is helpful to you, and I truly wish you fast healing and clarity ahead.
Re: Bone Mets Thread
@norah2024 I'm really sorry to hear about any kind of struggle with insurance or lack thereof. I wish I had some advice about that, but I'm sure others are in a similar situation and could offer some. I hope the results were insightful.
