Bone Mets Thread
Comments
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ChelleG, I am not an expert on bone mets. I am here for my mother's sake. I do know that many mets patients, including the wife of my mother's cousin, have no symptoms before a major bone fracture! I know for a fact that Tamoxifen can cause joint pain. As for popping and snapping that can be a symptom of real arthritis or maybe even Tamoxifen induced joint issues: are you able to get modest daily exercise? That might help with the creaky feelings. Obviously, my feedback is not worth a lot, but I do know a little bit of exercise might help. You might consult with your MO who can help you decide if you need to see a specialist. Best wishes, DF.
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Chelle: the feeling creaky and ancient is definitely a Tamoxifen side effect. My MO said especially when feeling stiff when first moving then improving with mobility. I can barely take the first few steps out of the car or off the couch and then I'm better.
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Hello everyone.
I'm looking for some help for my mother. Maybe some of you can give me a hand with your experience, information or support on bone mets.
She had a breast cancer 2008. Surgery, radiation, tamoxifen and finally aromansin (exemestane). She stopped aromasin mid 2014 after 5 years of hormotherapy
In November 2015 She started with back pain and bone mets were discovered
Bone Mets are wide spread in several bones (spine and hips mainly) but spots are small so they cannot be radiated
I was told bone mets activity is low. Bone mets are low grade (grade 1).
The second part is that at the same time 3 small mets in the liver from a previous colon cancer were discovered. (Unfortunately my mom hasn't been lucky with cancer but she is a fighter and we want to get as much info as possible to help)
Now She is treated with capecitabine, Bevancibuman (as targeted therapy) and exemestane
Capecitabine, Bevancibuman are chemotheraphy were chosen as they seem to work for breast and colon cancer.
Having aromasin back seems to be the hormotherapy option to Stop?Reduce? bone mets
After 1 month of chemotherapy and getting back to aromasin (after leaving aromasin for 1 year) she feels much better and hips seem to be better (but not good)
Here the questions for the breast cancer bone mets
Any help of someone who has passed for something similar with spread low grade bone mets?
Any hope to recover a bit o mobility of her hips without pain?
Anyone who stopped hormotherapy and bone mets were discovered wide spread just a year later?
Anyone who was able to stop and reduce low grade wide spread bone mets just with hormotherapy?
Do you think we should change from aromasine (exemestane) to other option as maybe it stopped working time ago and that is why just in a year bone mets were wide spread?
Thanks just for reading my words. If anyone could help would be great!!!!
All my best whises to all of you that now are having dark days (specially to bosco for her warm welcome)
Best regards and love from Spain (and please all of you, keep fighting!!!!) (And again as in my previous post Sorry for my English)
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Sending good thoughts to those having (or just had) scans...as well as to everyone else.
Decision - my MO doesn't do Xegrva (spelled wrong). He feels the side effects greatly outweigh the benefits. I've been stable on Femara for 3 years, but I'm not HER2+.
Maria - I was taken off tamoxifin because I had done five years and despite asking to continue, was told "it's protocol." A year later, I had bone mets. My femur was in really bad shape (had to have a rod put in), mets in hips, spine, ribs, all over the place. Biggest ones were pelvis, femur, one vertebrae, and one rib. And millions of tiny dots. I've been stable on femara for 3 years now. I did have one radiation treatment to my hip/femur, and five to my spine/rib. Many of my tiny mets have disappeared and the spine and rib ones are necrotic - I have "no evidence of active disease". So yes, it is possible to stop bone mets with just an AI. They'll typically try one AI and then do a scan to look for progression. If there's progression, they'll try another one, and repeat the process. It is possible to have mets all over the place from one year off AIs. I am definitely proof of that. I'm still stiff and sore some days, but certainly much better than I was when first diagnosed. You might want to ask about physical therapy or look into swimming to help?
Hugs to all,
Terre
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good afternoon friends. Hope today has been a pain free, side effect free day for all .
I am beginning to get bored here at the hospital. A true sign its time to get home. Hoping for tomorrow.
Hugs
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P.S. It is quite helpful to hear about the positive role of AI drugs in slowing or stabilizing the mets. Perjeta was not tried on my Mom. My Mom was on KADCYLA, as it is now recognized as vastly superior (I believe) to Perjeta for treating HER2 positive mets. It is a powerful drug, and my Mom was responding well to it before her lungs collapsed. Somebody wrote me a PM about combining Perjeta and Herceptin for HER2 positive cancer in the bones, not sure about the liver. Does anybody know about this combination?
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Maria Spain,
I can't speak to your mom's chemo (not sure what Bevancibuman is. It may be called something different in the US), however I have been NED for over 4 years on an aromatase inhibitor alone (after rads to the femur) and my bone met is also Grade 1. I started with Arimidex but switched to Femara to diminish side effects. As Kiwi said, switching from one AI to another is commonly done.Wishing your mom the best.
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Hello everyone have been "lurking " and at the same time praying and sending hugs to all. Thankfully I don't have much to report still getting Abraxane chemo which seems to be working I had a bone scan last Monday and will get results next week. I've lost my hai
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Sorry pressed the send button by mistake. I have no pain and no se's to speak off. I'm still getting physical therapy and can know walk short distances using my walker. Hope everyone has a good weekend restful and pain free.
Aurora
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Hi Terre
Thanks for your words. They come from just the opposite side of the world but they mean a lot to us. Having your great example is a a relief. Tonight with your words I will sleep a bit better
I had read some clinical cases about stoping bone mets with AI but reading directly from you is so great!!!!
My goal, our goal is to stop bone mets and resect liver mets from the other cancer...and keep figthing
For anyone who is interested you can find some info on the internet about how keeping homotherapy for more years is starting to be a real option (please all of you who are going to leave AI ask you doctors to reconsider it or at least aks them to keep a strict control on you. You can find more about 10 year with AI if you look for 2012 San Antonio Breast Cancer Symposium (ATLAS: 10 Years of Adjuvant Tamoxifen Offers More Benefit)
Yes Terre, Sometime protocols are so "cold" and out of reason. Here in Spain 10 years of hormotherapy is now begining
About My mom was a great swimmer buy after the second colon cancer she had to stop many of her activities
It was quite strange because in september she was going to the gym and just two months and a half later she was having problems to get out of bed and was hard even to sit in a chair
Thanks so much again and lots of Spanish kisses to you Terre.
Best Whishes for everyone
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Good evening there at the US exbrnxgrl and thanks for your reply
Great to know your experience too!!!
Avastin is the brand for Bevacizumab, As fas a I know Avastin is not commonly used for metastatic breast cancer but as my mom has mets from two different cancers (hard to believe) it was considered the best option
Thanks for your best whishes and all the best to you. (Great to know you are doing grear in AI)
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Hello all!!
Decision & Maria, Glad to see that you are both getting some answers. I'm afraid I have nothing to add to the discussion, but want to welcome you.
Chelle, I found that I had to try several different brands of Tamoxifen before I found one that didn't cause such horrific joint pain. It's the fillers rather than the drug in a lot of cases. Next time, ask your pharmacy for a one month refill of a different brand.
Aurora, fingers crossed for good results from your bone scan, do let us know. Sorry you've lost your hair.
Patty, Are you feeling better today? I hope you got a bit of sleep last night.
Hope everyone is having a nice weekend. It's sunny here which is a nice change after all the rain & grey skies lately.
Take care all, cheers, Dee
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Decision, You have so much going on right now. It is wonderful that you are doing so much to make sure that your mom receives the care and treatment that she needs. This must be a difficult time for you. Do not neglect your own health needs. You need time to heal and get your strength back.
Cristina, Are you lurking out there? We haven't heard from you lately. If you are reading this, take a minute to let us know you are okay.
Patty, I am sorry that you are in the hospital again. It is usually a good sign when boredom sets in. Do they know what is causing all those issues that send you to the hospital? I hope you are feeling well enough to go home soon.
Aurora, It sounds like you are making progress with physical therapy. You have been through so much, but you have been brave and strong throughout. I am happy to hear that you have no significant pain or SEs. I hope you get good news on the bone scan.
Bosco, I have been thinking about you. I hope you are doing okay.
Dee, I hope the sunshine hangs around for you up ther in Vancouver Island. I always feel better when the sun is out. It somehow just lifts my mood a bit.
I am behind (again) on reading the posts on this thread. Maybe it would be better if I give up and just go forward from here. By doing that, I know I have missed many important updates about scans, results, treatments, and questions. I will try to do better, but my gosh, it is tough to keep up with all of you.
I am keeping everyone in my heart and prayers. Enjoy the rest of the weekend.
Lynne
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Hi All
Just saw this....
FDA Approves Ibrance Plus Faslodex for Hormone Receptor-Positive Breast Cancer
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Lynne, I'm pretty sure that most of us here would forgive you that you've not kept up on the thread. I'm pretty sure you've had more pressing things on your mind. How's DH doing? It was beautiful & sunny here today, but not quite "top down" weather just yet.
Lindalou, That's so interesting, thanks for posting. Here in Canada, we're still waiting for Ibrance's approval, but I'm hoping it will be just a matter of time.
cheers, Dee
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Patty come home soon. What was with the blood in the urine?
Wendy wow, i feel from your writing that you were blindsided, i feel so bad. As everyone have suggested it's best for you to wait on the other scan and then you will be able to make the right decisions, warm hugs and kisses, enjoy your gang!
Lynne such incredible news, so happy for you. He def should listen to you! You went thru hell already, hope you could get some deserved rest!
Dee it's incredible how Canada could be lagging behind on those so important meds. My aunt came from Canada, she moved here, just to be treated for her serious diabetes. Could not get an appointment in Canada for months. Unreal.
Lindal it's a very interesting link. thanks for sharing, i still wonder on the HER2+. I guess Dani will be a guinea pig that's for sure.
Aurora so good to hear from you, keep going.
Deanna waiting on your scans right? So glad about your TMs.
LindaE how have you been feeling?
Bosco how are you doing?
Chelle so sorry you having these weird pains....
Annie, Terre , Mary hi. and to everyone else, i for sure skipped some of you. So sorry.
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Decision - Kadcyla is suppose to be very good. Xgeva is given in different dosages every 3 months from what i understand. My daughter gets it monthly. She is triple pos. Her2+, gone thru Herceptin/Perjeta abraxane and Kadcyla. It also depends how your mom at her age is dealing with the side effects. But your problem seems to be that this doctor that you have to deal with now, does not have an idea of what stage IV is and much less about the details, they should call in at least an oncologist, if there is one in the Hospital, maybe you would have a better chance. Could you get the Xgeva prescr. from her oncologist? Then maybe you could inject her yourself, without the ppl in the Hospital. I have given laxatives and pain meds to my elderly parents at different times in the Hospital, bcs of bureaucracy, they were giving low dosage for my mom, when she was used to large amounts, her private doc knew, but i was not gonna explain to these strangers the day to day for my 95 yr old mom. And then the pain meds, always we have to wait so long, I just couldn't. No regrets. I could tell how upset you are, hopefully she could get out of there asap.
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Patty, I hope you have gotten some sleep by now. Last time I was in the hospital for days on end, I borrowed an iPad and had myself a Downton Abbey marathon. It was funny how the nurses would come in and just sort hang out for a while and do their stuff really slowly so they could watch a scene or two! Let's see, what else did I do...
I played Words With Friends on my phone.
I pushed back my cuticles and rubbed massage oil into my nails. I watched a video on facial massage by Lisa Eldridge and followed along. She has a website with tons of videos-- lisaeldridge.com. She's English and lovely and she has such a soothing manner of speaking. Even if you don't care a hoot about makeup artistry or skincare, she is fun to watch.
I made a lot of lists, too. I love lists. You can make lists forever and never exhaust all the things you can make lists of. I doodled goofy faces just to make myself laugh.
I downloaded a bunch of Andrew Johnson's guided meditation apps. He's got this gorgeous Scottish brogue, sounds like Sean Connery, and he can put me in the zone faster than anything. Look him up! I love his meditation for Healing. His site is withandrewjohnson.com or you can find him on iTunes.
Hope you get outta there really soon! Happiness to you.
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Morning all - feeling better thanks for all the well wishes and hoping all have a pain free Sunday.
MO has changed plan. Have decided I have to trust him. My blood counts and blood pressure remain all over place - platelets are 12, white blood cells 1.. So we are cutting the Depocyt after one treatment and a week of radiotherapy and focusing on Eribulin with Zometa. Still taking anti-biotics . Will see. How Eribuln goes next week. Hopefully they will release me next week.
Need to go home and see family. Sick of hospital food ! Too tired to write more now
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momallthetime, thanks for being so empathetic. I have been through my own exhausting ordeal to get the right care for my Mom and myself. I am tired, and the recovery period for my own brutal and somewhat 'uncommon surgical ordeal is six to eight weeks. I appreciate that so many people on this thread have kindly tried to help.
My Mom's MO is only seeing patients on a limited basis. The acute care hospital doctor knows nothing about mets. My brother heard me talking to the hospital doctor and said that it sounded like one doctor talking to another!
In this small town, there is one group of oncologists, and my Mom's is the only one she can see but not at the hospital as her MO is too sick to do much. My Mom will have to wait and see his NP at the clinic when she gets out. My mom's doctor put back on monthly Xgeva shots. I am assuming he had a reason for scheduling the shots every four weeks.
I think the MO will try to push my mother into home hospice after she gets out of the acute care hospital and may try to refuse chemo treatments. My Mom wants to live. As long as she wants to be alive, I will be her advocate. I am getting prepared to do battle by learning as much as possible about mets treatments for triple positive disease. My mother is a warrior!
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bosco. I hope u get home soon. Hospital food is horrible glad to hear you are feeling better
Lulu. Thanks for some suggestions to fight boredom here oh yeah, I love making lists also
Deanna. Are you waiting on scan results ? Hope they are only good results. I guess I missed that were your tm's down ? I know your tm's seem to be accurate. For me, tm's don't work so mo quit testing for it. It only made me anxious. Hugs while you wait
Hello to all I missed. Hugs
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Lindalou - thanks for lovely tulips. Here are some more Spring flowers from my husband
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Hello hawksfansarah, my mom had the same neurophaty due chemotherapy after several sesions. It was neither Abraxanebut nor Ibrance but I can tell you after she quit she started to feel again hands and feet
Effects lasted more than a year since she left chemotherapy.
Although it is not the same treatmet I hope it can be of some help to you
My mother had to be patient to recorver the feelings in her hands. I hope it happens the same to you
All the best
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All the flowers look so beautiful in the pictures that have been posted. I looked at my perennial garden yesterday. It is still covered with a layer of snow in spite of yesterday's 50 degree temperature. I am looking forward to getting out there and digging in the soil this spring. In the meantime, here is a picture of the roses I sent to my DH to welcome him home.
Lynne
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My granddaughter is having a bad hair day. It put a smile on my face.
Lynne
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Lynne
She is just so cute. Kiss her up!!!! That's the joy in life and one of the main reasons we fight this shitty disease. My best days are the ones when I see my 2 granddaughters (which is infrequent due to their
b - - - - mom).
Babs
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Hello to all,
I'm a bit behind here, things are moving so fast.
Lynne, I'm so happy to hear dh is home and how nice of you to welcome him with beautiful roses. How are you both feeling? Please get some rest and take good care of yourselves. You have been quite the trooper through all of this. Your granddaughter is adorable, what a cute picture!
Patty, when you tell us you're back in the hospital my heart aches, you've been through this so many times. I wish they could get an answer as to what is causing this. Sending healing hugs to you.
Bosco, I wish you were able to get out of the hospital sooner too. Glad they're stopping the Depocyt if it's adding to your problems, and I am praying the Eribulin is a gentle and effective treatment for you. Sending you healing hugs.
Hugs to all, Annie
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Good morning everyone, including the new posters! I promise to read every post I've missed since Thursday, but I see there's a lot, so I need to do it a bit later when I can focus on everyone's situations and questions. For now, just quickly checking in to say that my scans are done, but since they were on Friday afternoon, I doubt very much that I'll hear anything at least until midweek. I was able to view my on-line lab report from last Wednesday on our drive into LA, and as I posted on the Ibrance thread, my TMs, which had actually nudged up a bit last month, had dropped from 218 to 178. Having that knowledge eased some of my scanxiety, but we've all been blindsided in the past, so I'm still holding my breath until I get the scan results.
Patty, I am so frustrated -- as you must be -- to see that you are back in the hospital. If I was there to advocate for you, I think at this point I would be very hard on your docs for not figuring this out any better than they have. Totally unacceptable to me -- although, admittedly, I'm not there -- just quarterbacking from afar.
Bosco, that is so sweet of your hubby to make a spring garden for you! I have to go back and read your posts, but since it looks like you're still in the hospital, I'm hoping you're feeling much perkier and won't be there too much longer.
Lynne, very relieved and glad to see your hubby is home at last, and the white roses are beautiful. And that beyond adorable pix of your granddaugher looks like it should be an ad for something. Will have to think about that, but it's just so cute.
As you can see, I've just skimmed a few posts and photos . More later when I can make some notes and respond intelligently. Just didn't want anyone to think anything was wrong. We stayed overnight in LA after my scans and met friends at the Ronald Reagan Library on Saturday, which was wonderful. That diversion and a supportive hubby who feels slighted when I'm on my phone means I'm way behind here and on a few PMs. D.
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Hi all!
Mommall - don't get me going on the healthcare in Quebec! I also hope Ibrance will be available here sooner than later. But even if Health Canada approves it, it doesn't mean the respective provinces will. Docs can request non-approved meds on an exception basis, but a lot of paperwork and sometimes refused. How are you and Dany feeling? I'm doing well, thanks for asking. In fact, I'm having much less pain spells these past few months and it coincides with Xgeva. Whatever it is, I'll take it. Fully adjusted to my new single life as well.
Lulubee - those are good suggestions even without being in the hospital. I will check your links, thank you.
Bosco - faith in our medical team is important. Glad you gave us an update. Hang in there, we're all rooting for you.
Decisionfreak - WOW you have a lot on your plate these days. Sending good vibes to you and your Mom.
Patty - How are you today? Waving at you.
Deanna - YAY on TMs!
Wendy - how are you holding up?
Love all the pics! Lynn - she's absolutely gorgeous!
Hugs all around.
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Deanna, that's a significant drop in tm's. I'm feeling very encouraged by that!
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