Bone Mets Thread
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Louis, that is great news! I did not have to wear my fixed brace after spinal fusion either. "better than perfect" is just what we all want to hear. Now on to recovery and feeling less pain for KD, and relief for both of you. I remember waking up in recovery and kept asking if I could move my legs. I think I asked it a million times!! With her fusion, she should be able to go back in bed. They will show you in the hospital how to help her out of bed, which is really important.
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Louis, great news! Hope your wife will be pain free soon!
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Louis, Great news... I came in late on this, but glad to see the good news.
Kathryn, before I had stage 4 I had back issues. I suffered with degenerate disease and L-4-5 S1 with spondololetheis, (sp) spinal stenosis, and I still have degenerate disease in those areas but no mets there. Although, they just said I had some abnormal uptake in SI joint I have no pain there yet- I had some laser surgery at the The Laser Spine Institute back in 2008 and it worked wonderfully with little if any se at all . Easy like Sunday morning I also had epidural steroid shots and they work wonders. Hope this helps.
Sil- good luck
Hello to everyone ...
Hugs,
Carol
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Deanne I would appreciate it if you could let me know how I can subscribe to that blog so I can follow her posts.
Aurora
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Louis (KD's Husband) - wonderful news! So happy for you and KD and the boys! Yay!
Cathy
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Louis
Thinking of you and your wife today. Hoping everything goes well🙏🙏🙏🙏
Bab
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Hello everyone - I am not new to BCO, but am unfortunately new to this board. I have just been diagnosed as Stage IV with extensive bone mets (spine, clavicle, humeri, pelvis, femori). I was Stage IIIA (ILC) in November 2011, had bmx, chemo and rads, and was clear till now. I have gone through quite a bit of scanning (PET, CT, MRI, Xray), plus a biopsy, in the last few weeks, and will see my onco tomorrow to go over all the results and get a treatment plan going.
I am stunned, and extremely sad. I am 48, have three young children (13, 10 and 8) and my husband moved out/announced that he wanted a divorce in July. I work full time, and am jammed at work. So much to handle all at once. Hoping you will let me join this very supportive (I can tell by what I have read) group. I am particularly interested in anyone who has ILC with bone mets - I am trying to research the differences between ILC and IDC but haven't gotten very far with that yet, and would be happy if anyone can point me to some good resources.
Lisa
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Lemondrop, I'm so sorry about your re-diagnosis, and, of course you're stunned and sad. But please don't lose hope! Many of us here are doing extremely well -- far better than outdated stats would have you believe!
As far as the difference between ILC and IDC, there are a couple of threads here that address that, for which I'll give you links below. However, I think the bottom line is -- as long as you're ER+ and Her2-, your initial tx probably will not take it into consideration. In fact, the whole question of whether ILC needs to be treated differently is just beginning to be explored, and few oncs feel there is enough research data to yet support tx distinctions. So while it's good to educate yourself as much as possible, unless you have one of the rare oncs who is actually doing research on ILC, I don't think it's going to make any difference in your tx plan and might be unnecessarily overwhelming to delve into yourself at the moment. This is pretty much what I was told at UCLA when I asked if it mattered whether my mets were IDC or ILC, since I had both initially in 2008 -- that it only becomes a factor when you're tx resistant, which thankfully has not happened to me, nor is it common. The more important thing, IMO, is to be sure you have an onc you totally trust -- preferably one who specializes in mbc, so that they are always up on the latest research, whether it's ILC related or something else.
Here are those links, but, as I said, I wouldn't try to delve too heavily into this just yet, as I think it might be unnecessarily overwhelming unless you happen to be a scientist...
https://community.breastcancer.org/forum/71/topics...
https://community.breastcancer.org/forum/71/topics...
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Lisa,
Please feel my warm hug for you. And my prayers.
You have found a great place for support, comfort, and information. I know your head is spinning right now. I hope you have friends and family to help. Please come here often and let us know what your onc says.
I cannot help on the ILC questions, but other certainly will.
((Hugs))
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Lisa
Welcome to this awesome strong group. Lots of wisdom and hope here.I too had initial dx in 2011. But I was idc.
I am heading to seattle tomorrow to talk to a doctor about participating in the EMBRACA trial. I will either get a parp inhibitor or treatment of choice. Unsure yet if the trial is for me.
Louis happy for you and your wife. Sending good thoughts for healing.
Mary
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Lisa: welcome, but sorry you have to find us. I also have young children and I have mets in pretty much every bone. I'm a year out from diagnosis and doing really well. But it definitely took awhile to put it in perspective. It's so overwhelming at first, and you're dealing with a lot.Feel free to reach out anytime. You will get great support here.
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Lisa, I'm a ILC girl with widespread extensive bone mets to just about every bone in my body. 17 months out from recurrence, NED after 13 cycles of Ibrance, Femara, Xgeva, You have found a great place here for support, advise, and even laughs. Once you get your treatment plan started you will feel a little better. Hang in there !
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Lisa' I'm an ILC girl too with extensive bone mets and liver. I went a long time between stage 2 to 4. 18 years. My first treatment for stage 4 Ibrance /let gave me 10 months and just now I just started faslodex.
Hugs Carol
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Lisa- I m also a ILC girl with bone mets diagnosed in May. I m currently on Xeloda and doing well. I hope you find the information you are looking for regarding ILC. This board gives me valuable information and hope ! I posted previously that I recently spoke to a woman who has lived with bone mets for 18 years !
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louis. Glad you're wife's surgery went better than great. Hoping for a speedy recovery. How sweet of you to post for her. I hope she decides to join us soon. It was the best thing I did for my emotional health
Lemon drop. Welcome. Sorry for your new Dx. You will find so much info and support here. Just jump in any time
I've had a migraine and fever since sat evening. Fever broke this morning and feeling better this evening
Hugs
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Sorry to say I had a wicked weekend. Received an Xgeva shot on Thursday after holding back due (late 2015) to a tooth extraction earlier this year - well the pain from the side-effects of the Xgeva in my arthritic hip was excruciating - I seriously couldn't get it under control. Even my hands were crippled and almost frozen in a clutching-like position. I'm much better but I wouldn't wish that on anyone. Has anyone else suffered after an Xgeva shot like this?
I'll be going in for a total left hip replacement in 4 weeks so am off Ibrance while I get my white blood counts back to normal. Btw, the orthopedist took X-rays of my hip and as he was reviewing them I asked what the white spots represent... He said they're my tumors...wow, there are so many of them and one is the size of a golf ball - what's funny though, the tumors aren't causing any pain, thankfully. If I hadn't seen the X-ray I wouldn't even know they're there.
I used to think arthritis was a wimpy disease, boy have I been wrong. It can be debilitating. In fact I had to cancel my pilgrimage to Rome which was coming up in two weeks. I can barely walk around my little house, there's no way I could walk around Rome and Italy for 13 days. Fortunately I bought trip insurance that let's me cancel if I have a hang nail so that's good but I really was looking forward to this trip.
Bullfrog, after seeing my X-ray I feel like you, mets in nearly every bone. It really is overwhelming and rather discouraging but for me the good news is I am not crippled up or limited due to pain (with the exception of the unrelated arthritis) so I have to focus on that.
Patty, I'm sorry you're dealing with migraine headaches again. Can you get to the bottom of their cause? Can they be treated?
Hi to Carol and Lynn. Mary good luck with your trial. My parents live in Anacortes and have since 1979 so I have a great place to vacation and sometimes just for fun, during a visit I'll take the ferry to Friday Harbor or up to Victoria. It's so relaxing, even in the winter to grab a cup of coffee and watch the world go by from the comfort of one of the booths and the big window to look out and watch for Orca's or seals, eagles etc.
Louis, it's very kind of you to write on behalf of your wife. You're a loving husband and obviously want to help her the best way you can. Staying in touch with us is a good start.
Lisa, welcome.
Amy
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Lisa, joining my voice to welcome you. So much info, knowledge and support on this site.
Louis, so glad surgery went well and anxiously waiting for more news!
Amy, good luck with surgery. It's a shame you had to cancel your trip but you'll be up and about to plan another one. That Xgeva reaction was quite a doozy and glad you're feeling better.
Patty, darn migraines! I absolutely loathe them.
Hugs all around
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Thank you ladies for all the prayers and well wishes. Here is the latest:
48 hours.
That's right. It was 48 hours from when KD walked into the Spine Hospital with her brace on, until she walked out of there WITHOUT HER BRACE!!!
All of staff at the hospital "marveled" at how rapidly KD progressed post-surgery.
What they did not know was how many prayers were being lifted up on KD's behalf. That's right, all of those prayers made all the difference.
KD is now home resting comfortably in her recliner (and issuing orders as usual). :-)
KD had a rough time Monday night and early yesterday, but after they got her ahead of the pain, she rallied and got up three times to "walk the halls". Needless to say, after a busy day, she slept great last night. She woke up this morning, ate a good breakfast, showered, walked the halls a couple of more times, and they said she was "good to go".
Now, the recovery continues as she heals from this surgery and eventually resumes her chemo treatment.
THANK YOU, THANK YOU, THANK YOU ALL and THANK YOU GOD!!!!
Amy, I can only pray that your surgery is as successful as KD's. We will certainly be praying specifically for that.
Patty, sorry about the migraines, but glad you are feeling better.
Mary, hoping for the best if you get accepted for the trial. Let us know which way you go.
Louis
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Amy- The xgeva shot is brutal sometimes for me too. Especially where there are active mets- The last shot I got my skull had shooting weird pains that felt like a sun burn. I do have have skull mets but they don't seem to care much about skull mets just like they don't care about rib mets! It must be the weight baring bones that get the attention of MO's and RO's- I remember the first time I had the xgeva shot I thought my ribs broke all over again. My mets in ribs are now headed so it isn't as bad there at all now when I get a shot, so the hip thing really makes sense. Maybe the xgeva SHOT can be replaced for finding bone mets!!
Hugs, Carol
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Hi everyone,
Lisa, Wow, you have a lot going on between your husband's announcement, parenting 3 children your job, and your diagnosis. I am sleepy you have reason to join us, but welcome. As you have already discovered, we have a great group of people here. I have IDC with ILC features rather than ILC, but others here who have ILC have already reached out to you here.
Louis, Your update of your wife's recovery has put a big smile on my face and tears in my eyes. She is so lucky to have you to support and care for her. Do not neglect yourself. I will continue to pray for both of you.
Amy, I am sorry that you have to postpone your trip to Rome, but I am even more sorry about the horrible pain you experienced with your Xgeva shot. What a terrible reaction you had! My grandfather and mother both suffered from severe, progressive, crippling RA, so I know that it is far from a wimpy disease. I will add my prayers to Louis's for a quick recovery from next month's hip replacement surgery.
Patty, I am glad your fever broke, and I hope your migraine goes away soon. Is your thyroid medication helping at all?
Mary, it is always good to hear from you. I hope the news about the trial is good. If you decide that it is something you want to be part of, will you undergo testing soon?
Lynne
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louis. Great news. Prayers are powerful.
Hugs
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A question for those who have rodsin your spine- what brought you to that point?
I have one compression fracture in L1. I've had rads, ablation and vertoblasty to other lumbar spots. Tomorrow I start a round of rads on T3.
Is it multiple fractures that bring on the need for surgery?
Thanks!
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Kaption, For me the rods were necessary because of tumors in T-8- T-12 that were destroying my vertebrae, in addition to compression fractures and spinal cord compression. I had two full session of rads ( 17 each) which helped for awhile but I had reached my radiation limit and my tumors became radiation resistant. I've had ablation as well in L3. After my spinal fusion, the neurosurgeon told me I was within a week of being paralyzed. I have 2 12 inch titanium rods in T-8- T-12. Airport security loves me!
Patty, I hate migraines too. My MO says mine are a result of depleted estrogen.
Louis, you know how happy I am for you and KD. Hoping she continues this path of recovery well.
Amy, so sorry to hear about your upcoming hip replacement. I will be thinking of you.
Hi to everyone else....thinking of all of you. I was driving home tonight in the country and saw the most beautiful full moon, along with an orange and purple sunset. Made me smile and glad to be alive.
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Thank you, Lindalou!!
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Kaption, Good luck as you start rads tomorrow and may you get relief quickly.
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Kaption,
Like Lindalou, KD's compression fracture was severe enough that her RO & Neuro were sincerely concerned about paralysis.
The Neuro said that Fusion Surgery was the last thing he wanted to do, but KD had no other choice. Because of the location of her compressed T2, they were not able to do the Vertebroplasty (or Kyphoplasty).
So, accessibility of the fractured vertebrae, severity of the compression fracture and the number of compression fractures can all be factors.
I really hope and pray that you can treat your L1 with another Verteboplasty, because Fusion Surgery is much worse, as I'm sure Lindalou would agree.
Louis
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Hello all you lovelies wow this thread never stops thank goodness.
Welcome Mr. KD your wife is one lucky lady to have you on her side. I know many woman whose husbands hit the road after hearing about a cancer diagnosis. I don't get it but it happens . Happy to hear that she has had good surgery that's great I hope she recovers quickly and gets this beast beaten.☺️
Amy good for you getting a hip replacement I need two new knees and I've been stalling. I didn't think they would give someone like me a replacement because of the stage four stamp. I will need to get on the ball and see my orthopaedic surgeon. Rome isn't going anywhere it is there waiting for you when you are good and ready. Health first right.
Patty I was so happy to see you so happy and pain free🤓 stupid migraines could it be food related. I hope you feel better soon.
Lemon drop welcome to the group this group will be of great help.
Just got results from my CT scan stable no new growth and all the lesions are sclerotic and shrinking. Pretty excited right now.
Wish everyone the very best take care all.😊
Wendy
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Wendy - just love reading your results!
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Wendy, so happy to read this! Put a big smile on my face!!
Patty, hope that migraine is gone for good.
Linda Lou- I love hearing how far you have come. Very encouraging
Kap- good luck today.
Lemon Welcome!!
Hugs Carol
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Louis, thank you. L1 cannot be worked on, but they watch it very closely. Thanks for the information from you and Lindalou. That helps.
Wendy- how very exciting! Happy dance for you!
Patty, hope you are doing better with your headache. I've had migraines since I was a teenager (although not as bad as my dad and his whole family. And, thank goodness that family trait has stopped with me). I've always believed they were hormone related because they would happen about 3 days in a row, once a month. And, I really haven't had many since the mbc dx. I did while on tamoxifen. (Before mbc) But, something I've been getting the last 3 years have mostly stopped them. Or I outgrew them! Weird! Anyway, Patty, hugs!!
Wishing everyone a pain free day.
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