Bone Mets Thread
Comments
-
That sounds awful Anne, at least I'm not alone in the OR freakouts though. I got that way right before my mastectomy surgery a few years ago.
So my nurse called me back about the back pain and they wanted to book an MRI right away today! I was upset bc I haven't even got the xray results from Monday. Plus it costs a lot of money for each scan. I decided I will do the scan this coming Wed before my oncology appt so I just take care of everything medical in one day. I'm wondering if the cancer has spread to my ribs. I just don't get why I'm not feeling any better since April but maybe I'm not giving it enough time.
0 -
Patty- you are always so lovely,it could be anxiety too not just or depression. I agree with Deanna totally, you might have gotten your tolerance threshold with these meds, so you need new ones. That simple. Something you could fix. Go for it.
0 -
I'm glad to see this thead is busier - with good or bad news. I so much appreciate all the support and compassion we have here. Depression sucks! Our minds are powerful and can play some nasty tricks on us. I know my mind carries me to dark places at times with this stupid disease.
Anne - how awful. I'll bet you were happy it was betadine!
Cristina - Good luck with your upcoming tests.
3-16 - Chronic paranoia as in chronic disease... seriously, I've had a few scares which turned out to be nothing or arthritis. I have to remember I'm getting older.
Linda
0 -
Patty, So many of us have experienced those "dark" corners. Not okay and downright scary. Please call your doc's emergency service for help today....or if not available check into the emergency dept @yourhospital. They will sort out what you need drug wise or not" drug wise. Damn this cancer. You need help and support now to chase those ugly thoughts. My prayers that you can turn the lights on to eliminate those dark corners. Get help girlfriend. Hugs, Peggy
0 -
Patty, So many of us have experienced those "dark" corners. Not okay and downright scary. Please call your doc's emergency service for help today....or if not available check into the emergency dept @yourhospital. They will sort out what you need drug wise or not" drug wise. Damn this cancer. You need help and support now to chase those ugly thoughts. My prayers that you can turn the lights on to eliminate those dark corners. Get help girlfriend. Hugs, Peggy0
-
Since I'm a budding photographer and it seems like some of you like photographs, here's one I took on my Alaskan cruise. My sister flew me to California last Friday (got home yesterday) but the California beach pictures are still in the camera. So today Alaskan snow and mountains, and soon southern Californian beaches!
I've had some pain in a rib recently. Saw my MO last week and she immediately had me get a x-ray, which shows nothing unusual. I wish the pain would know that and go away.
Patty, you must come here and talk when you are depressed. I know I will. I know I have - that radiation thread I was on was full of my whining and moaning (and many months later I'm still having se's from the damned radiation) and I hope that when things are bad I can do that here too. But for today, let's enjoy the scenery:
JJ
0 -
Hi Ladies - I agree with the rest regarding depression. There is help if you just reach out and ask. Love the pics too. Taxol # 3 tomorrow.Cathy
0 -
Profound sympathy to all who are not having the bright days this week. Hope the dark feelings pass quickly.
0 -
So sorry about your shoulder, MamaRay, but glad you went to the ER and got an immediate dx. I limped around on a cane with severe leg pain for 3 mos. -- thinking it was from the bone mets and something I would just have to live with -- until one weekend it got so excruciating, I had no choice but to go to the ER and found out I had "pathological fractures" from the mets in both my femur and pelvis that required a total hip replacement and a titanium rod inserted in my femur. Long story short, I think it turned out to be a blessing because my ortho surgeon removed a lot of "funky" (diseased) bone marrow, and after several months of healing and PT, I'm as good as new, with no pain in that area.
Although I have no way to compare a shoulder replacement to a hip, I truly believe my surgery gave me a jump on the disease by removing a lot of it. I also had an incredibly skilled ortho surgeon -- a guy who had been a sports doc for major pro athletic teams for many years (my hubby had just used him for a knee replacement a few months earlier, so we knew who to call!) -- and I credit my outcome to his extraordinary expertise. So that would be my only advice. If a replacement is recommended, be sure you have the right ortho surgeon -- someone who specializes in shoulders at the least -- or maybe an oncological ortho surgeon if you're in an area where there is one. But based on my experience -- and again I don't know if shoulders are any trickier or any longer recovery (they may be) -- I would not be afraid to go that route if you need it. (((Hugs))), good luck, and keep us posted! Deanna
0 -
good morning ladies.
Thanks for all the support. I am feeling much better today. Stayed up all night. Finally got to sleep around 5 am. Woke up feeling much happier. Sorry for bringing the negative junk here. I surely was encouraged to remember I am not alone.
Hope everyone has a great day.
0 -
Good news, Patty! Even though you're feeling better, when you talk to your doc, don't minimize what you were feeling yesterday. It's really important that they know the worst of your moods, especially if your current meds are involved.
And don't EVER apologize for negativity! My goodness, if we were all happy all the time, we wouldn't need a support group! I'm just happy to know the reason for your absence wasn't another hospitalization or other physical relapse!
Okay... so we still need to hear from Dune and Carla and anyone else who hasn't reported in for awhile.
Oh, and Patty, your situation made me wonder... I think someone on BCO keeps a Stage IV address book. Does anyone know who that is? Is it active, and are we all in it? There have been several times when I've wanted to do more than a post or PM, and if there's an active address book, it would be good for us to each be included if you want to be. Otherwise, I'd be happy to compile one just for this thread. Deanna
0 -
Anyone had RT to the same area for bone mets? I think my skull mets have reappeared. I had RT to them in December last year.
0 -
Hello everyone,
Patty so glad you are feeling better today and were able to get a good rest. Deanna makes a good point about letting your doc know what you've been experiencing. Something I will keep in mind as well. If it wasn't for bco, I don't know where I would turn to let loose my anxieties. I don't want to upset my family and have them worry any more than they do, and no one understands the feelings we experience better than everyone here who is on the same roller coaster. So no need to apologize. You ladies here are a godsend of support.
Mammaray, I did not have shoulder surgery but did have a spinal decompression and fusion involving rods, screws, cages, vertabraplasty, radiation, you name it. Even as complicated as it was, I would do it again in an instant for the relief I got. I agree with Deanna, it also got rid of a lot of bad stuff and lessened my tumor burden. So if that's what's recommended, I'd say go for it.
Spring watch I don't have any experience with repeat radiation, but I thought it could only be treated once.
Hope everyone is having a good day.
Joanne
0 -
Hi all,
Thanks for the pic Jean! Just lovely! Sorry you're having pain.Patty - don't apologise! This is the place to "dump the negativity". Sometimes just "talking" about it helps. Glad today is better for you.
Mammaray - No experience with the shoulder thing, but have the rod in the femur. And it did help. Getting a good surgeon is the key, of course.
Spring - no experience, but I know they did "minimal" radiation on my hip so that they could go back if need be. It's all about the dose to the area. There's a cost/benefit - too little and you still have problems/pain, but too much and you cause risk of radiation poisoning/cancer (of another type) in the area. So it's dependent on the dosage you've had to date, among other things.
Hugs to all,
Terre
0 -
Patty, I'm so happy you checked in but I'm sorry you are feeling so down. Like everyone has said we all have those dark days, I have been there too and sometimes it's harder to snap out of it than others. I'm glad you're feeling a little brighter and never worry about coming here and telling us your true feelings. If you can't do it here then where? Hugs to you!
MammaRay, so sorry about your shoulder, is it extremely painful? I had a rather large met in my humerus that gave me so much pain. Radiation has helped it so much I forget it's there and have been warned not to lift anything heavy. Best of luck on Monday, please let us know how you make out.
Springwatch, I have no experience with repeat radiation but my rad onc did say if I ever needed radiation to the areas they already treated they could do it again. It depends on the dose they gave you the first time I think. I'm praying your skull mets did not reappear.
Infusion day for me today and I've been achy head to toe. I don't understand why some days I feel relatively pain free and others I'm in so much pain. I'm on Celebrex for the arthritis letrozole has caused. It's not entirely getting rid of my pain. My hands, wrists, knees, legs, and feet hurt so bad sometimes I want to scream. It's causing me more pain than the mets, crazy!
Hugs to all, Annie
0 -
hey ladies.
Feeling so much better. Wow. That was awful. Thanks again for the support.
Deanna _ I know another thread I participate in has 2 people keeping a contact list. What a great idea. I often wonder what happened to someone and want to reach out but don't know how. Looks like a lot of work for someone.
0 -
So glad you're doing better, Patty! Did you speak to your onc?
I would gladly keep a contact list for this thread. It's no big deal. I did it for our chemo group back in 2008. If you want to be part of it, just PM me your mailing address and phone number. I'm thinking PMs here work as well as our personal emails, so it's mostly addresses (for a card if someone is hospitalized or having a particularly rough time), and phone number (in case we don't hear from you for a worrisome amount of time). But if you want to include an email addy, that's fine.
I will just cut & paste what I receive and PM it out to those who want to participate. Nothing fancy or time consuming. My only "concern" is letting new women who come along know about it, as I don't want to continually bring it up. But we can at least start with those of us who are here now. Deanna
0 -
Great idea, Deanna. Thanks for taking that on!
Something that might also be nice (if people are willing) would be to put in an email address. Not to be morbid, when I was dx, I went from work to the hospital in the blink of an eye. My DH created an email list that he spammed information out to regarding my progress. So I was thinking that maybe having an email addy from the group to give to my DH would be good so he could at least keep one person updated and they could update here?
Annie - I am so with you! I'm out of Celebrex. I can't find my damn prescription. So I can't get it filled. And I'm on ibupropen at the moment. And I hurt literally from head to toe. I can feel everyone one of my mets and my arthritic knee is screaming at me. Since I'm limping the opposite hip hurts now and I almost fell down because the hip is annoyed with me. All Femara-related arthritis pain. Not that I'm not grateful that it's keeping me stable. It does get frustrating. I have to take the girl kittens to the vet to get their stitches out in an hour, then my top task for the day is to find my prescription paperwork! Ok..done whining.
Patty - glad you're feeling better. Being in the depression pit sucks big time.
Sending hugs to all,
Terre
0 -
Success! Found my paperwork. Off to the pharmacy (or chemist as it's called here).
0 -
Kiwi, don't mean to intrude but I got such a kick out of your post. I visit Banff, Alberta often and over the last several years there are so many Australian/New Zealanders working there. I was standing behind a guy (who was apparently really bad with accents) and the young lady kept telling him he had to get what he wanted from the "kimest". It was so funny...."the what?"...."the kimest"...."the what?"....I should probably have ended his confusion, but it was way too much fun to watch:)
0 -
Love the idea of a contact list. We could even create (easily) an email discussion list, or a private Facebook page. I would volunteer if people wanted a Facebook group page.
JJ
0 -
Hi All,
Deanna - there is a central adress book. Nowheregirl keeps it udated. I pm'd her a few months ago giving all my contact information. She then gave me a password to access to the data. Lots of personal contact info there. Try searching Central address book - it should give you the procedure, I think.
Springwatch - I initially had rads for pain relief to pubic bone in Dec 2013 - 5 treatments. When pain came back in Aug 2014, I had a one time rad tx again to same area.
Patty - glad to hear you're feeling better. This is THE place to share our problems. That said, don't neglect to talk to your docs. I personally had to try different meds before the right one worked. And your boys will be back in no time. I'm sure they can't wait to see you.
Mammray - so glad you came back!
Annie, Terre - My hands are becoming so stiff from the Femara and painful and my feet hurt so much when I get up in the morning...
Dune - I sure hope you're doing OK and you too Carla.
Linda
0 -
Deanna - this is the thread for the central address book
https://community.breastcancer.org/forum/8
Linda
0 -
https://community.breastcancer.org/forum/8/topic/7...
Deanna - I'm trying to copy the Central address book thread. Hope it works.
Linda
0 -
Linda - hear you @ hands.
Leggo - That's hilarious. I'm American, my husband is a kiwi. When he was still in NZ and I was in the US, we were chatting via Skype and he said he needed to run out for a bit but would be "super fast". So about 10 minutes later, he's back and bragging that he was fast. I asked where he went, and he said "I went to see the chippie". Now...where I come from, a chippie is a loose woman. Here, it's a carpenter or a fish & chips shop (he went to the latter). I told him that most men wouldn't brag about being fast at the chippe.
He also once told me he was nackered and I thought he said naked. Turned out he was just tired. What a disappointment. Hugs to all,
Terre
0 -
Terre, lol at chippie and nackered. We met a New Zealander on the train in England and couldn't understand much of what he was saying but he sure was a happy fellow. But then again when we listen to our family from England alot of their sayings are different too. My niece just spent 10 months in Canada and everyone she met was intrigued with her accent and vocabulary, when she left to go back home she was sad, she said no one back home is going to care to listen to her when she talks 😁. Feeling yucky today after my infusion, the torrential downpours and high winds aren't helping my mood. Just want to sleep! 😴.
0 -
Good day for sleep Annie. I'm hoping to fall asleep soon, since I'm having another bad pain day. This is bull and needs to stop. All I did today is walk for 35 minutes. For that I get a painful pubic bone, lots of painful ribs, and a miserable pelvic girdle. Boy oh boy this is getting old. I think I'll be around for a while yet though.
0 -
Heu Dune - good to hear from you. But bugger for the pain as Terre would say.
Linda
0 -
Great to see your smiling face, Dune! And yeah, bugger the pain. Sorry to hear you're dealing with so much.
I think I may have to take a real pain med tonight; being out of Celebrex for a week has let the pain get ahead of me with walking in the mall for an hour yesterday, so need to get it back in check. Compared to what the rest of you are dealing with, this is nothing - just arthritis. Still not fun. And I used to be able to shop for five or six hours at a stretch in high heels!
And it is a good day to sleep! Cloudy and rainy here.
Hugs to all,
Terre
0 -
Thank you all for your feedback on having radiation twice to the same area. I had scans on Friday and am awaiting the results which should be available tomorrow or Tuesday at the latest. These were whole body scans to monitor my response to treatment, which so far has been good on gem/carbo. Not to bore you with too much detail but I had a brain MRI at a hospital which I don't normally attend because I had a focal seizure. The MRI reported: "impression of marrow replacement in the skull vault likely to indicate bony metastatic disease. There is cortical expansion within the left posterior parietal bone but no evidence of associated intracranial mass effect". So basically mets seen in the skull, but my brain is clear. However, the neurologist who discharged me said there was cancer in the meninges. My onc doesn't think the MRI report explains the seizure and is very angry that the neurologists have discharged me back to his care. He is trying to get copies of the brain scans for my oncological radiologist to read to determine if a) it is in the meninges and b) if the skull mets are active. Then in a new development I had a phone call from my treatment center yesterday which found very low levels of magnesium in my blood tests and they want me to start on supplements. Low levels of magnesium can cause seizures. The neurologist who discharged me after the seizure prescribed a anti-convulsant which has a known side effect of causing bone thinning which I really need with bony metastatic disease. I think it is going to take awhile to get this all sorted out. I can feel the met in my skull and am hoping I can have more RT to it.
0
