Jan 13, 2018 11:47PM - edited Jan 13, 2018 11:48PM by NettaGER
A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.
Posted on: Jun 22, 2012 02:09AM - edited Oct 31, 2012 01:07AM by Jac53
I've started this thread after suggestions that it would be useful.
This is an easily readable Bone Mets Q&As from the Bone & Cancer Foundation: http://www.boneandcancerfoundation.org/pdfs/Breast_Cancer_Q+A.pdf
Posts 20431 - 20460 (22,840 total)
Jan 13, 2018 11:47PM - edited Jan 13, 2018 11:48PM by NettaGER
Jan 14, 2018 12:16AM - edited Jan 14, 2018 12:25AM by Bliss58
So very sad to read about LindaE54's passing.She was also very welcoming and encouraging to me when I first joined over 2 years ago. I miss seeing her postings. My condolences and hugs to her family and all of you who were close.Thank you LindaLou for the update, and Deanna for the update on Patty.
MargaritaMI, I had SBRT over two years ago to T11 and left illium that went very well. So far, those mets have remained inactive. Good luck to you.
Jan 14, 2018 04:07AM zarovka wrote:
There is a thread for local liver treatments that you can check out. Post your experience there if you go forward. Many will be interested.
I am having SBRT to the liver and sternum in a week. It's a great strategy based on what I have read but I don't have personal experience yet.
Jan 14, 2018 06:23AM MargaritaMI wrote:
bjsmiller, good to hear of your SBRT success - that’s very encouraging. And Zarovka, I will post updates on the liver tx thread as you suggest. I’m having the procedure tomorrow so we’ll see how it goes butI’m optimistic. Thanks for your responses.
Jan 14, 2018 08:14AM PHOTOGIRL-62 wrote:
So sorry for this news about LindE54. My she Rest In Peace now but we will miss her.
Thank you Lindalou for the update and also thank you Deanna for the update on zpatty. She’s been through so much.
So thankful for all my sisters here. I feel like if I didn’t have you I don’t know what to do.
Jan 14, 2018 08:34AM GracieM2007 wrote:
Z, will be thinking of you, praying it zaps those spots right into oblivion
Jan 14, 2018 09:22AM jensgotthis wrote:
I had SBRT to my acetabulum and it was a total success in zapping the cancer. I was at risk for fracture so we chose to do it, and all is healing now. Good luck with yoirs
Jan 14, 2018 11:32AM - edited Jan 14, 2018 11:32AM by Bliss58
Z, wishing you great success with the SBRT. Happy Sunday to all. Sunny here today and I need to get outside for a bit to enjoy it! Hugs.
Jan 14, 2018 11:37AM schoolmom wrote:
has anyone ever had a procedure called vertablasty? They inject a bone cement into compression fractures to ease pain and fill in the collapse. All I have had is radiation to one and getting ready for second at T12
Jan 14, 2018 12:32PM Lita57 wrote:
I've only heard of kyphoplasty, which I think is somewhat similar...they inject epoxy in between the vertebrae to keep them from compressing nerves.
I may have to resort to that myself as my back gets worse from the mets. I have to find someone who's really good to do it tho. Any time you mess with the spine, it can get get dicey.
Jan 14, 2018 12:57PM Kaption wrote:
I had vertoblasty ( with ablation) in several lumbar spots. I believe it made that area stronger.
Jan 14, 2018 01:54PM Maire67 wrote:Z, Hoping you get a good response with your SBRT. Maire.
Jan 14, 2018 01:55PM Maire67 wrote:Z, Hoping you get a good response with your SBRT. Maire.
Jan 14, 2018 01:55PM Maire67 wrote:
Z, Hoping you get a good response with your SBRT. Maire.
Jan 14, 2018 04:13PM TNMTNGAL wrote:
@Vilma65 we have low income medication dispensaries here in Tennessee where RX meds are based on your income. Some meds are free. Are there any places like this where you live? The one here is "Dispensary of Hope" in Johnson City, Tennessee 37604. I hope you can get help!! Sometimes the manufacturers will offer coupons.
Jan 14, 2018 04:14PM TNMTNGAL wrote:
@Jack53 I have had the "cement fillers" done on my wrist. It's awesome!!
Jan 14, 2018 04:31PM - edited Jan 14, 2018 04:33PM by PattyPeppermint
oh my. I am so sadden to hear of Linda passing. She texts often eso about her dog. / dang name escapes me - Was quick. My prayers are for her family and friends. She was super friendly and I'll always remember all the emotional support she had been to me plus many others. She will be missed.
I am still alive in hospital since 1-4. Just could get over vomiting snd got dehydrated. Anyway long story short. I have refused and iv chemo up til now but mo says no tx to live a month is pushing it. Maybe 2 weeks or next week. Scary as hell. I always thought I would stop to at this point and just go make more great memories do meds not making me sick. But mosaic ut will not get better only worse.
So I started the chemo. Dang can’t thinj straight to remember name. Another problem. Can’t ginish sentence usually before I forget my question. Very scary.
Jan 14, 2018 05:06PM babs6287 wrote:
Patty. Please don’t be afraid of the chemo. I pray it gives you relief and better. QOL
Z hope the SRBT works and you get a good response.
I woke up this AM in excruciating pain behind my rt knee and heel. I couldn’t really walk. Finally went to MSKCc thank god. They found a blood clot in my right heel. I am now on twice daily injections of Loveton. They taught me how to do the injections. Ugh! It seems cancer patients are much more likely to get blood clots. So heed any warnings your body gives you. I was so reluctant to even go to MSKCC today !!!! Please all take care of yourselves!!!
Jan 14, 2018 05:29PM Lynnwood1960 wrote:
Babs, thank goodness you went and got that pain checked out! Very scary to think how vulnerable we all are to blood clots!! Hope your pain resolves soon
Jan 14, 2018 05:55PM Maire67 wrote:Patty . Praying for you to have some pain free peace of mind. Know that whatever decision you make are the best for you. You have the love and support of all of us on bco. Maire
Jan 14, 2018 07:09PM zarovka wrote:
Patty - Thank you for stopping by. We think about you all the time. Tough choices.
Babs - Nice job catching the blood clot. Clots are incredibly dangerous and we are all at risk. There is an organization called Stop The Clot that does education on the topic. It's worth checking out the website.
Jan 14, 2018 07:21PM MJHJAN1014 wrote:
Babs-sorry to hear you are enduring the insult of a blood clot-so painful and in your heel of all places. Good you can do the at home anticoagulant. Sure hope your pain has subsided. MBC, the gift that keeps on giving...
Patty-Oh my gosh, you are enduring so much right now. I pray that the chemo does it's job quickly with minimal SE's. Hope you are feeling better as far as the dehydration.
Love to both of you very special people, MJH
Jan 14, 2018 07:29PM Jaylea wrote:
Margarita, sounds like SBRT has had good success from the response here. Good luck to you and Z, hoping you get relief with minimal SE's.
Lita, praying for you to string together a bunch of good days as you work out your next moves.
Patty, prayers that the chemo does it's good work and gets you out of the hospital and back to the comfort of home and family.
Babs, good God, another course of treatment?!! So glad you took action.
Jan 15, 2018 12:49AM RyanT wrote:
Hello my name is Ryan. I posted a few months back in the Lobular thread when my mom was first diagnosed with bc. Everything seemed to be going well, she was on a clinical trial and had a good prognosis but a few days ago they found tiny spots on her spine and right hip and they believe its mets. She is getting a PET scan on Thursday to make sure but we are devastated and so scared. My mom doesn't feel any pain so she is very confused. In fact she feels great physically! How does bone mets work? Will she start feeling pain soon? Please help!
The oncologist said my mom will continue hormone therapy and later on do chemo. We have been researching and she also wants to try natural methods as well such as juicing and apricot kernels. Have any of you tried this? Based on the research we've done it seems very beneficial. All my thoughts and prayers to each of you going throughout this. Any advice you can give that I can relay to my mom would be greatly appreciated!
Jan 15, 2018 07:33AM GracieM2007 wrote:
Hi Ryan! Very sorry you joined our group but glad you found us, these ladies are very knowledgeable and you will find a lot iof help here.
Jan 15, 2018 09:43AM 50sgirl wrote:
Hi Ryan, Welcome to the Bone Mets thread. I am sorry that your mom has been diagnosed with possible bone mets. I hope that the PET scan show that they are not mets, but I certainly understand why you and your mom are scared. The good news is, even if she does have bone mets, they can be treated. Since she has only two small areas of concern, the doctors might recommend radiation to those two spots. That would probably be followed with systemic treatment. Without knowing more about her cancer, whether it is hormone receptor positive or HER2 positive, for example, it is difficult to say what kind of treatment might be recommended. The next piece of good news is that many people with bone-only mets live for quite a long time. It is not as dire as you might think. By the way, ignore any stats you might have seen. They are outdated. There have been many new effective treatments developed in the past several years. As far as pain is concerned, she might not experience pain for a very long time, if ever. I have had extensive bone mets throughout my body for the past 2 1/2 years, and I have experienced virtually no pain since treatment began. Please keep in touch and let us know how you and your mom are doing. There are many people here to support you and answer questions
Hugs and prayers from, Lynne
Jan 15, 2018 09:50AM 50sgirl wrote:
Babs, I am glad you had the good sense to go to the hospital. I know those shots are no fun, but they do their job. I hope you get relief from that pain and are back on your feet soon.
Patty, I hope you feel better and better as Carbo does its work.
Lita, you remain in my prayers. You have an amazing way of finding your way through all the obstacles thrown your way and somehow find the joy in life.
Hugs and prayers from, Lynne
Jan 15, 2018 12:32PM Maire67 wrote:
Patty. Sending extra prayers your way and gentle hugs. Lita Meatballs sounds great and your kitty was doing what I do during football. Snoozing on the couch is great on a cold Sunday afternoon. Babs hope the blood clot resolves quickly. It’s a warning to all of us to listen to our bodies and not to downplay new pains.
My mo called this morn. She’s adding Tykerb and Arimidex to the mix with HER. No more Faslodex. Another PET scheduled for early Feb. Tumor markers are up. RBC low but white count normal. I was hoping the Her and Faslodex would work.. I have to laugh I was looking forward to a trip in early Feb and a big one in May to Europe. That was the first thing I thought of this time. Not the usual panic of I’ve got to get everything in order in case this is IT. Wondering how this will affect me and my travel is progress for my mental health. Always surprises with each new plan.
Peace to all.
Jan 15, 2018 06:07PM Quaatsi wrote:
Wow this is one active group of amazing women. I don't know anyone yet but sure am getting a good feel for you all.
Maire, I have been on Tykerb and found it very do-able. It is a daily tab to take. My only se was a bit of loose stool which worked perfectly for me since I have the opposite issue from too many years of other chemo.
I think I have developed a type of allergy to Herceptin and have e very known (an unknown) se to Herceptin so I am open to doing that again --if needed-- instead of any herceptin based treatments. You will be fine with it and can even travel (I camped for 3 weeks on it!).
Jan 15, 2018 06:19PM Leapfrog wrote:
Hi everyone, I've been offline for a few weeks but I'm back again to check on you all and try to catch up with the latest. I can see I'm miles behind with what's been going on and I'll do my best to address it.
Hi Netta, sorry you've found yourself here. I was also dx de novo with bone mets. Mine are in my entire skeleton except for my arms and legs below the knees - skull, neck, spine (lots of), ribs, shoulders, sternum, pelvis, hips and femur. I was dx in Oct 2016 and have been on Letrozole and Ibrance since then, with Denosumab bone strengthening injections monthly. I find Letrozole to be the main culprit when it comes to SEs, as in joint and muscle pain especially, and daily stretching and light yoga type exercises help enormously. You have to keep those muscles stretched out and don't let your joints seize up and then you're fine - relatively speaking! I get a lot of tingling from my head down my side and down the side of my legs which my oncologist puts down to Ibrance. Apart from the fatigue that we all get when our WBC is down, I'm ok. Like you, my tumour marker zoomed up and is currently jumping between 450 and 520. It started off well, tumbling down from 900 to 390 in the first few months and then it hiked back up to 520 and it likes to tease me by coming down and then going back up again, so much so that I don't ask about it any more. My oncologist says the CA15.3 is notoriously inaccurate and we go by my 3 monthly scans which, so far, have shown stable disease.
Claudia, I was put straight onto Letrozole and Ibrance as my first treatment as there is a trial happening in Australia which is hoping to show that this combination works well if given before any other treatment has been given. It's not quite what you're asking about as you've had previous treatment but I thought it might put your mind at rest that it's not necessarily a last resort type of treatment. Pfizer believes it will work well this way.
Lita, I'm so sorry to hear of your progression. Sending hugs and prayers xx
Welcome to those I haven't met yet. Spicedlife it's hard to say what's right for you and whether you should ask for scans and copies of your lab work. I am given scans every three months because I'm on a trial and I'm given copies of my lab work. I should think you're entitled to ask for your lab work but perhaps you should check with your psych whether it's good for you to have a lot of information. If it's going to stress you out badly, it's probably best left to your oncologist to do your worrying for you - IF you trust him/her to do that. Information is only helpful up to a point. Tumour markers can be wildly inaccurate and only cause stress so I've stopped asking for mine, as I've said. You need to weigh up what you think will be good for your peace of mind because that's what is so important to us. We need to be in a calm state of mind as much as possible for as long as possible.
I'll gradually catch up with you all in time. I feel as though I'm so far behind I don't have a lot to offer.
Love and hugs