Bone Mets Thread
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ALL AND Star 2017
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There’s a little bell at the top right of my page that indicates if there are new posts to any thread I have bookmarked (see photo below). Does not everyone have this? It’s the first thing I go to after I log on. Just click on the bell and the different threads are there that I can click on. Just for reference, I use an ipad most of the time.
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I also use the bell and flags otherwise I wouldn't know where to find my favorite threads.
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No I don't see that. It used to be so easy to find. I think I've found a way to get here,but it requires so many clicks! I'm reading on an Android phone.
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Thanks for the information star and threetree. I do not have an RO assigned to me as of yet. Still early in the process with pet scan aug 8 and MO visit aug 10th to go over areas that light up. I've never had any radiation in the past. A newbie that's anxious. Thanks again ladies.
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Hi everyone. I had a PET/CT yesterday. Mostly things are stable, but two new things did light up. The radiologist thinks the first is fat necrosis. The second is a new site that they can't determine. It could just be the result of changes in the hip joint, because it's right by my original met. Or it's a new met.
Sigh. I'd been doing pretty well on the Lynparza. About 1.5 years. I was hoping to go longer. I know it's possible this is nothing of concern, but I can't convince myself anymore. I've been feeling down and scared. Trying not to let it get to me. Doc says she will watch tumor markers for the next couple months (not something she usually does), and will rescan in two months (rather than my typical four).
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Hey Star,
Sounds like how my progression went. Onc started asking questions like hows your hip? and I couldnt understand why because nothing hurt. Until it did but it was a very slow creep up in the numbers over many months until changes could be seen on the MRI and they were right around the location of my largest original met which was radiated and a new spot (I think? who the hell knows) on my sitz bone. I was unhappy about changing from Lynparza because it was so easy and I mean cmon, surely something targeted at the actual genetic mutation should work longer right? But we all know thats not how it goes.
Try not to feel too down for the next 2 months and get out and do things youve been wanting to do. Ill just say that it was a very very gradual decline on this drug (numbers and symptoms never spiked which made everything so confusing and so easy to convince yourself it may be something else). I dont think I noticed how overall I had been declining until I started Xeloda and was perking back up in a few days. I did finally read my liquid biopsy and it showed mutation on the BRCA chain and nowhere else which is both a pro and a con maybe.
It'll be ok, but its tough to let go of the known and stable yet again.
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star, since the wait and see approach is what you have to work with, I agree with what sondra says about spending the next couple months doing the things you want to do. I hope the best for you.
This month my blood work was slightly different from last month. The creatinine last month was 1.09. This month it went up to 1.14. The GFR went from 56 to 53. But the bilirubin which was 1.10 last month went down to.80 this month. The ca15-3 went down from 28 to 25. All other results were in normal range. No idea what to make of it. Any thoughts? I will be scanning later this month.
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@divinemrsm My only thought on your blood numbers is to wonder if you are hydrated enough. Xeloda is very dehydrating which in turn is hard on your kidneys.
@star2017 The unknown is difficult for sure. I also have an area in my left leg that is always questionable. It’s where my femur rod connects and I often have inflammation in that area as well as mets. I’ve had PET, CT and bone scans in that area over the years and yet we never really know. We just make sure the femur nail is secure and basically watch my mets in other areas which still leaves me with a lot of areas to watch. 🤦♀️
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Thanks, all. I am trying but I think I just can't clear my head and focus. As a teacher, I also have almost too much unstructured time right now. Kids and other events are keeping me busy but I can't escape the fears.
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Sorry, it deleted the second half of my post.
Previously I would've stayed positive but I'm fairly certain this is a new met. And tho it be responded well to radiation in the past, can they radiate again? Will I change meds? Am I running through my options too quickly. Will I see my kiddos grow up?
I'm going to pray and try to get engrossed in a book or something and play with the kids.
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Star2017 - it sounds like you have a good plan for the moment. The waiting sucks. Know that it isn't always the worst case although it's totally normal to let the mind go there. I am frequently trying to talk myself back from the ledge of panic. I had a spot in my left femur that showed up on a bone scan and I was told after looking at that and x-rays that it was a large met. It wasn't. We did the wait and see approach and on my follow up bone scan four months later it was gone. Turns out it was an area of osteonecrosis from an old knee injury and I had been overusing the leg. I'm not saying that's what yours is but know that there are other options out there than progression too. Sending hugs ((😊))
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Hugs to everyone with the Acme anvil over our heads. I feel like Wil E Coyote...
I was able to hike and watch osprey and bald eagles fish at these lakes the other day.
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Beautiful! I visited Sand Point Idaho many, many, many years ago, and this looks a lot like what I saw.
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Beautiful photos! It looks so peaceful.
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Beautiful photos! thanks for posting
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Beautiful photos, Mkestral!
Thank you all for the support, wisdom, and kindness. I've got an appointment with my orthodepic oncologist in a couple weeks. He may have more insight. In the meantime I'm enjoying the kids and our new kitten. We've never had a cat before, so it's been an adventure. He's been with us for about 9 days.
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Oh new kitten! Photos! Make sure to get a Cat Dancer toy and aaaallll the cat nip :)
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Hi all. Has anyone had a tumor on the rib from the mammary gland? How did you deal with it? Did you remove the rib and change it to an artificial one? Or chemists?
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Hello. Does anybody have experience in second line treatment for stage IV with bone mets after using Ribociclib and Fulvestrant. I have been in treatment with no progression for 3 years. Recently the last PET scan shown new active mets. I will be having a doctors appointment soon but I am a little nervous about what’s is next. I would really appreciate if someone can share thoughts or experience it about new treatment options. Thanks
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eulalia, I have not had the exact ribociclib and fulvestrant you did, but have been on something similar. Ribociclib is a CDK inhibitor and Fulvesterant is an estrogen blocker. I took Ibrance and Aromasin which is a combo CDK inhibitor/estrogen blocker. The Ibrance/Aromasin combo came after I’d had IV chemo, radiation, lumpectomy and took an antiestrogen med, Anastrozole, for about seven years. When the Ibrance/Aromasin did not work at all for me, I did a short six months on Verzenio, no luck with that either, and then started on Xeloda, an oral chemo pill which I’m still on for over three years. Its side effects are mild, I consider it a rather tolerable treatment.
I know its not the exact same scenario as you, but has some similarity and hope my explanation makes sense and helps.
Btw, I went to Catholic school a few years and my first teacher was a young woman named Sister Eulalia. I haven’t heard that name in forever! So pretty!
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@eulalia21 - My first mbc line was Ibrance/Fulvestrant for 19 cycles. I actually had minor progress after 11 cycles but we zapped the spot with radiation and continued on I/F. Not the same as you but very similar. Then I tried Verzenio/aromasin. It was a big failure. Six new bone lesions and 5 lesions in my liver. Xeloda was next. I found it easier than my previous treatments and although my initial results were fantastic, ultimately I only got 9 months.
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Savaloko I had a pathologic fracture of a rib and it has somewhat healed and stopped spreading after radiation. I don't know anything about ribs being replaced.
Here are some mountain pictures from recent trips. The radiation to my shoulder blade helped the pain so I was able to enjoy kayaking.
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mk, beautiful photos. You may have said, but where are you? My DH did some canoe trips in the Bowran Lakes region (BC, Canada) when he was a teenager. They canoed a lake, then hiked carrying their canoes to the next lake. Good memories for him.
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mkestrel,
Beautiful…..sitting at my computer, I swear I could smell and feel a gentle breeze wafting over the lake and pines. Thank you for sharing.
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Gorgeous photos, mkestrel!!!!
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Didn't know where to put this exactly, I was at my local doctor the normal stuff doesn't go away just because we have cancer, it was the usual, checked my blood pressure, and told me I could do with losing some weight 🙃. The good news is that she is seeing more and more stage IV breast cancer patients stable for years.
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I do t like new site either. My insurance is not paying for xgeva .I have Medicare and Blue Shield California an6 advice is there a generic?
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@positive2strong, can you switch to Zometa? They usually will cover that one. It’s an infusion rather than a shot.
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