Bone Mets Thread
Comments
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I belong to a Canadian Breast Cancer Facebook Page now. It's called Canadians with Metastatic Breast Cancer.0 -
Hi, everyone!
A few months ago I was diagnosed with spine mets T6 and partly T7 with compression fracture. That's over 1,5 years from primary tumor treatment (stage 3A, low grade, node 5/10, ER+/PR, HER-, ovary removal surgery). I was on Tamoxifen for this period.
I went SBRT Novalis xt 4x5Gy=20Gy month ago.
As it seems Tamoxifen is not working now I have AI Anastrazole. And that`s all for systemic therapy.
I am planning to go to PET/MR or PET/CT to exclude distant mets. (2 months ago, it was clear).
I also had communication with spine surgeon vertebrologist, who thinks that I need surgery.
I had a second opinion that I need chemotherapy.
Has anyone had a similar situation?
What do You think about my situation?
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I think we must do everything we can. Bone mets are nasty and painful. I am doing weekly Taxol.Cathy
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good morning ladies.
Dune - great to see you back. You were missed. Sorry for the bad pain day. Hoping today is much better for you
Linda - femara stiffness - ugh first thing in the am and last of the day are the worst for me
Mammaray - welcome back
Terre - your Dh was a kiwi ? What's that ? Like fruity ? And a chemist sound s way better then the pharmacist. Think I'll start using that.
Dlb - I pmd you my contact info. How very sweet of you to take the time to do this
I am so much better. Back on a happy track. Wow that was scary. I talked to mos nurse who left me a message they have a RX read for me. I haven't went and gotten it yet or called the nurse back. Don't need it now. My boys will def be home by wed. I smhooinh sooner. I am so excited!!!!! They will def bring some life back to this house !!!
Have a great day all. Hugs all around. Hello to all I missed
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leva, has your second opinion explained why you need chemo at this point, supposing your not so extensive mets are still confined within your bones and in fact you have just started AL treatment (it usually takes about 3 months to show the results)?
All, wish a bright Sunday to everyone (although rainy here)!
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Dune, sorry about your pain, I hope today is a better day. Thanks for checking in and please don't stay away so long, we missed you!
Patty, yay to the boys coming home. I know what you mean about them bringing life to the house. I feel so happy when the girls are home, but being they're 21 and 23 that doesn't happen as much as I'd like between their working and social lives. But when they are here I am overjoyed!
leva, I'm not understanding why they're saying you need chemo at this point. How long have you been on an AI?
Xavo, rainy here too, torrential rains all day yesterday and again today. Hoping to see some sun soon.
Hugs to all, Annie
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annie - stay dry
Leva - I agree with the others. Why chemo so suddenly ? I don't really understand that.
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Leva, did you have a clear PET or CT when you were first dx'd? I'm not a doctor, but what I can't quite get my head around is that you were dx'd as Stage IIIA in 8/2013... were on A+CT in Summer/Fall of 2013... then turn up with bone mets advanced enough to apparently include a compression fracture just 1.5 years later. Did you have osteoporosis prior to your bc dx? As far as being put on chemo at this point or requiring back surgery, I would absolutely get a second and even a third opinion before taking either of those steps because they are both big ones, and I would want more than one doc to weigh in on them being necessary or any other options. JMO...
Dune! So sorry about the pain, but glad you're back! And I can sure relate to the dilemna of wanting to get much needed exercise vs. causing increased pain. Been there. Done that. And it's very frustrating! Maybe the key is to start with 10 or 15 mins and try to build up slowly. I know 35 mins. isn't much, but evidently, it's too much if you haven't been walking for awhile.
Thanks, Patty. I'm going to start a list. So far, just you and me, but I hope others will add their info. Linda, thank you for the link to the central address book! I will also add my info there, as I think we all should. But with a separate password needed for that, it just seems easier to me to have a list in our PMs (which I'll PM to everyone) of our buddies here on this thread.
Happy Sunday to everyone! Deanna
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Kiwi, thanks for cracking me up almost every day! Super fast at the chippie's.
Too funny!0 -
Hi all! Thought I had better check in here. We are having a heat wave & it's miserable. Those of you south of us will laugh, but when your usual summer temp is around 20c/70F and we are having 31c/88F it's too brutal. The temp only fell to 28c/84f overnight. So we'd like some of the rain that some of you are having.
Had rads to my arm, it's feeling a bit better. I have an MRI to my back on the 10th, then hopefully rads to that area. Other than that, my TM's are low, so I'm hopeful that I can stay on anastrozole for a while. I tolerate it well & the next step sounds brutal.
Dune, hope your pain subsides. I always pay when I do too much, we just have to try to take it easier, it's easier said than done. Patty, Deanna, Terre, Annie, always good to catch up your posts even if I don't have a chance chime in. Sorry to all I have missed, everytime I go back a page to read I lose my post.
Going to go water my poor parched garden....
Cheers, Dee 0 -
Leva,
While your post states you are low grade, your sig and bio indicate that you are grade 3. And, you developed mets in a fairly short time after primary diagnosis. While I wasn't in your exact position, I failed Tamoxifen as well, and had fairly rapid growth of bony metastasis, so my Onc put me on weekly Taxol to put a stop to it. His reasoning was that chemo works faster than anti-hormonal therapy, and he wanted to confine the spread, to keep it from getting into soft tissue and organs.
After a year of Taxol, I got a year out of Faslodex (an anti-hormonal), then went on to Xeloda. When Xeloda taps out, I will probably do Femara/Ibrance.
So, what I'm saying is that chemo works well with aggressive tumors (like ours) to limit spread quickly. Do not fear chemo. Frankly, Xeloda has been much easier and less painful than Faslodex. I fail to understand why some in our community seem to think chemo is a last ditch measure, when it is simply a tool. Due to the fast reproductive rate of grade three disease, it responds quite well to chemo (quick uptake of chemotherapeutic agent and all that).
I have no experience with surgery for spine stabilization. Are they recommending the kyphoplasty? That's basically spreading bone glue around to stabilize the region, and seems much less invasive than a fusion.
If I were you (and we do share the same pathology, I would do chemo and kyphoplasty, get stabilized, and then try the anti-hormonals. If you leave a chemo before it fails, you can go back to it later whenever it is warranted.
Bigs hugs for this. Figuring it all out isn't easy.
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Terre, I'm with leggo, thanks for the comic relief!
Deanna, I will pm you my info too! Thank you for taking this on.
Dee, omg my friend from Vancouver Island messaged me just this morning about your heat wave and drought. She said it's very unusual. Something is wrong here, those are normally our temps and today it only got to a high of 17c here and only 21c forecast for the rest of the week. Your garden is parched and my plants are drowning and water logged. Crazy weather! I would just like to see the sun again.
Hugs to all, Annie
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I'm with blainejenn....I am on chemo for lymph node and bone cancer. Can't do hormone therapy, I am hormone refractory...acts like fuel for the cancer. I have been on many chemos since my cancer returned. Every time it rears its ugly head, we change chemos...I have had no progression since on chemo, but there are only so many chemos out there. When we have used them all, we will have a problem, but so far it has been a good 3 1/2 years. Also on zometa. There are so many different ways docs approach this...had to know which way to go. I got lots of opinions, then did what made sense to me. Doesn't mean that's right for all, you just have to be comfy, or as comfy as you can,with your decision. Good luck everyone .
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The weather broke a bit tonight with a light shower & the temperature went from 30c/88F to 25c/77F which felt quite cool compared to what it's been. Annie, I'll happily trade you some sunshine for a bit of rain... I never thought I would say that I'm sick of seeing the sun shining in the morning when I get up. Does your friend live anywhere around Gabriola where I am?
Susan, I hope that trend continues for you for a long, long time. Leva, sounds like you're getting some good advice here, I don't have the same situation, so I am no help whatsoever other than support. Patty, happy to hear that you are feeling better, some days it's hard I know, but you can always come here, no matter how you're feeling.
Good night all! It's late, I must get my beauty sleep, ha ha!! Cheers, Dee
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Oh, thanks for answers
...Yes, You are right - I had grade 3 (which means high grade, but also in our country we call it a low differentiated tumor)
When I was first diagnosed in 2013 I had also bone scan scintigaphy (before neoadjuvant chemo started) and there was one spot near T6 which was diagnosed as arthropathy (also in spine`s MRI and CT) and nobody suggested me to repeat some spine check in a while.
Yes, now I agree that it was misdiagnosed. And when I had check ups with my oncologist (once in three months) I always mentioned about my achy in the spine, but she did not suppose to send me for another investigation for the spine. She said - we always do bone scintigraphy only after 2 years behind initial treatment. So I went to a bone scan by myself. And here I am with spine mets.
So till far I have zoledronic acid (something like Zometa) IV/every 3 weeks. I had SRBT for my spine (20Gy), which is not so much (I red MD Anderson give even 60-70 Gy also to spine). Vertebrologist suppose that I need corpectomy (surgery when T6 corpus is replaced with implants) and stabilization. This would be palliative surgery as they will take out broken bones millimeter by millimeter and they can`t take out all bone. I also had a conversation with spine surgeons from other European city who specializes in so called "en-bloc" surgery.
For the time of SBRT my oncologist said to stop using Tamoxifen but she asked to continue Tamoxifen after radiation. We had a long conversation and I asked her - do I understand her correctly about anti-hormones and explained her again my situation and she agreed to switch from Tamoxifen to Anastrazole. (It may sound stupid, but I feel I must control the decisions of my oncologist).
So now I am waiting for PET/CT or PET/MR (I am thinking about Germany as we do not have a PET in my country).
My European spine surgeon asked to perform Pet scan to exclude distant mets to decide about radical surgery. And depending on PET scan result, I think I will go to either spine surgery or chemotherapy
Do You know - is there a difference in PET/CT and PET/MR how they see all soft tissues and bones?
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Leva, as far as I know radiation does not really stabilize the spine nor alleviate all pain in cases of vertebral compression fractures. A PET/CT or PET/MRI (don't know which is better) would be able to show if stabilization is needed, if there are other mets, if chemo is appropriate, I would think.
I found this link: http://www.touchoncology.com/articles/advancing-care-cancer-patients-vertebral-compression-fractures-radiation-oncology-expert-0/page/1/0
Dr Dickerson said he followed a protocol. ‘If there is any instability or existing vertebral compression fracture, I will refer to orthopedic or interventional or neurosurgery just to do the balloon kyphoplasty or vertebroplasty procedure..."
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HI all,
Glad I can pop in and provide comic relief from time to time. I do read everything, just too tired to respond some days, and this is one of them. Super high pain day today and my dizzy crap continues. Almost fell over on the way to the train tonight. Just annoying. But overall, I'm fine!
Patty - a Kiwi is someone from New Zealand. Kiwifruit is the brown fuzzy fruit, which is also known as a Chinese Gooseberry. They were imported from China and not native. A kiwi (not capitalised) is the national bird.
They are highly endangered because they are a flightless bird. The adults can defend themselves against a fair number of predators, but the eggs and babies are considered "good tucker" for things like dogs, possums (from Australia, different than the opposums in the US), stotes (these kind of little weasel things), rats, mice, ferrets. New Zealand's only native mammal is a bat and all the others are introduced, and they love the flightless birds - for dinner. So most of the native NZ birds are highly endangered. Now you're probably sorry you asked! Here's a kiwi as in the bird kind.
And here's Kiwis of the people kind. My husband is on the far left. This was at an astronomy camp we went to last year.
I'll spare you pictures of the fruit.
Hugs to all,
Terre
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I can say that the pain I feel in my spine is very very mild. I do not use any pain killers at all. My radiologist (a therapist who planned and controlled my radiation) said that at this moment I do not need surgery just for stabilization (or I must find vertebrologist who is experienced enough). I don't have any neurological symptoms, I do not have spinal cord compression and I feel fine, I always could walk and move, there are no differences today or one year ago. I must use spine bandage all this time.
(but MRI and simple CT showed mets and compression fracture, lytic metastasis). CT in April showed that tumor didn`t have a blood supply.
As this is only metastasis I have (hopefully pet scan will confirm that) I would like to go towards radical en-bloc surgery vs debulking or maybe another option - do not perform surgery at all ( two vertebrologist suggests also this optin but I prefer more radical treatment) .
Surgeons didn't offer me Kyphoplasty or vertebroplasty just corpectomy, that's not for my case.
if spine tumor doesn`t have blood supply - does chemotherapy will work in this case? As I understand from my second opinion oncologist who want me to go under chemo - that would be mostly for systemic treatment in case there is some cancer in cells level.
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leva, i always got pet/ ct, scans. Insurance has just started declining them, so now I get, bone scan and ct scan. My doc prefers pet/ct, but I am doing the next best option in his mind now.
Good luck
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Terre, enjoyed your kiwi and Kiwi talk, bird kiwi is very cute.It's nice to have a non-cancer moment.
leva, good luck with your treatments.
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terre - aww that kiwi bird is adorable. I loved the knowledge something new everyday right? 😀
Mammaray - hi there. You look like you also posted very early, lol. Love it that this thread is nearly always toward the top of stage IV page. Hope many more people join us or just lurk nd feel ewelcome.
Deanna - yea. So glad you are doing the list. Sounds like a lot of work but thankful you are willing to take it on. Will there be some sort of minimum post or something else that determines if someone new should be entitled to our info ?
Dee - lol. Our usual summer temp is way more than 70°. Although that sounds awesome. Heat index usually stays over 100° for days at a time. Just so very sticky and wet - humidity is horrible. Walk outside and can perspire before I make it to the car. Yuck.
Susan3 - hats off to your 3 1\2 years onfemara
I've been working on getting my affairs in order. I think I would feel better knowing all I could do for Dh now, that ive done it. Its just so exhausting. Today I finally picked the funeral home for cremation and even managed to go by there. They gave me a packet to fill out to help with obitustuary, cremation permission ,death certificate etc. I really did pretty good tll somehow I ended up holding the temp urn box. Had a minor breakdown , gathered it up and walked out with what I needed smiling . I think enough for today. Maybe tomorrow I open the packet and get started. Sorry not trying to be shocking or too much info kind of thing. I just know I've buried and been s huge part of the process for my dad, step mom, step dad, and mom already. My dad died from cancer after a long battle so his funeral was planned. It was just so huge that we spent the whole time there doung things not comforting each other. Both step parents death was quickly and unexpected. No funeral plans. That was horrible. They really take advantage if your emotions at the time to charge you more and again lots of running around and decision making stole our comforting times with are family coming from ever which direction to be there and have to hurry home. My mom died of cancer and she was 100% prepared. Everything was decided and in writing. Everything paid for. She did her own obit and even legal documents being completed mins the death date . .flowers and music - - puctures - everything was decided , gathered up , completed. We finally had time to sit back and be of and receive comfort. We told stories of days gone by and laughed and celebrated her life. That's what I want for my family.
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Hi all,
Patty - that is beyond kind and thoughtful of you. I've done much of the same with my pre-planning, plus set up a trust fund for the cats (yes, sounds whacko, but there's reasons for it). It's hard, but an incredibly kind act. I did find that once I had it done, it was like a great weight was lifted and I could then go on living and didn't need to focus on dying and "what if" anymore. I hope it brings you the same peace.
Susan - great @ 3.5 years! I'm at 2.5 stable on Femara. Fantastic to see someone ahead of me!
Gotta get some work done..
Hugs to all,
Terre
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terre. - cheers to your 2.5 years. Very encouraging. Yes! I am 2 years at the end of this month on femara. Praying for many more
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Terre, loved the lesson in Kiwi jargon! Very cute!
Wow, Patty, that's so brave of you to tackle the preplanning stuff. I guess I'm still in denial! And good point about having some kind of qualification before sharing our contact list with newbies. I'm open to any suggestions.
Leva, I'm glad you're not in as much pain as a compression fracture sounds like it could cause. I'm also impressed with how well read you seem to be about your dx and treatment options. Are you open to sharing what country you're in? I'm curious.
Susan, hormone refractory is a term I've never come across. How did you and your onc figure that out -- from failed A/Is, or with testing, or ??? Thank goodness you're responding well to chemo!
In addition to Carla, I don't think we've heard anything from Romansma recently. Looks like she's back from her cruise and has posted on the Ibrance thread though. So Hope, we need some updating and hopefully some photos from Alaska!
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Good afternoon Deanna
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Hello everyone, we finally got to see the sun today, what a difference it makes in my mental state, I'm really affected when it's rainy and dreary.
Patty I'm so happy to see you posting again, we've formed such meaningful friendships here that when someone goes missing you wonder what's going on and worry. I was thinking of that tonight and realizing I haven't seen Myra on here for awhile, and am missing her as well. I also thought of auroaya, last post she had a small lesion I think she was getting biopsied, I hope it turned out to be nothing of concern.
Carla, thinking of you always and wish you would check in as well.
Hugs to everyone here, Annie
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Annie thank you for thinking of me . I'm more a "lurker" than a poster but I read the thread always. I did . Had the biopsy and it came back positive for mbc . I have my next appointment Wednesday and will see justifiably changes there will be. She had already switched my hormone blocker due to progression in the bones so I don't think she will do much else. The lesion that was biopsy was a 1 cm in the right armpit and another same size in the right temple. Right now I'm having a mental break from cancerland since my mother is here visiting from Mexico. But every night before going to bed I peek in here and see hhw everyone is.
Aurora
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Aurora, so glad you checked in but sorry to hear the biopsy came back positive for cancer, I pray whatever treatment she switched you to for progression in your bones takes care of the lesions too. Glad you're getting a break from cancerland with your mom's visit. Please check in every now and again. Enjoy the visit with your mother.
Hugs to all, Annie
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Aurora - so sorry to hear about the biopsy results. Bugger. Hope you enjoy your visit with your mom!
This has nothing to do with cancer, but today is our 8th wedding anniversary (no congrats required) and we got the most amazing surprise! A friend sent us champagne, flowers, and chocolate.
Doesn't get much better than that! The friend who sent them was in a car which was hit by a speeding drunk driver 15 years ago. She's paralized from basically the collarbone down. She has some limited use of her hands so she can run her electric wheel chair. She paints by holding a paint brush in her mouth. Her attitude is amazing - even when she had horrific bed sores and other health problems, she didn't whine, just provided factual reports. She's everyone's cheerleader - the first on Facebook to say "congratulations" when something good happens, the first one to send a hug when things go pear shaped. So, when I get into pity party mode, I remember how good I have it and that if our friend can stay positive in the face of great adversity, so can I. Of course, easier said than done. But she is an inspiration to me, and her kind heart never fails to amaze me.Hugs to all,
Terre
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