Bone Mets Thread
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thanks blue
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My brain MRI was clear in terms of no mets IN the brain but the report doesn't seem to address skull mets, which was noted as a possibility on my bone scan. I asked my NP and she just sent me the full report (which isn't long), so I emailed my RO and asked him to review it and clarify whether it was mentioned in the report and if it wasn't whether it was possible to ask for the images to be looked at separately. Is there anything else you all would suggest I do?
Did CT scans of the abdomen and pelvis today and hoping for good news tomorrow. The contrast they give you to drink is currently launching small explosions in my digestive system. I've been eating so cleanly I think it's done a real number on me...so I added a glass of wine and a chocolate truffle or two. Why the heck not?!?!
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jen. Great MRI news !!!!! Doing happy dance. Hope the news tomorroww is equally good
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Thanks Patty! Gla you are back at home. Rest well tonight
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thanks. Can't wait to sleep in my bed
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Mary-Evelyn, I just want to echo what the others gals have said. I, too, have diffuse and extensive bone mets -- too many to count -- but thanks to the regimen I'm currently on, you would never know it looking at me, and at this point I think the drug SEs cause me more discomfort than the actual bone mets. Of course it's impossible to wrap your head around a Stage IV dx at first, but just know that six months from now -- when your meds have kicked in and any pain you might be having is under control, you will realize that this is not an immediate death sentence and that dire prognosis you mentioned won't be nearly as prominent in your thoughts. And by the way, DO NOT Google prognosis info! It's very outdated due to newer meds, and like everything else about our disease, varies greatly from individual to individual. In fact, someone posted a video on FB today about a 25 year mbc survivor!
Patty, hope they let you out today and that your DH and boys are taking good care of you at home! Continue to rest up and get your strength back!
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Jen - More information to come from the CT, but so far so good. MRI is a reasonable way to look for skull mets. It is something they usually look for in an MRI. If it is not mentioned, skull mets were likely not there. But I would not hesitate to request clarification from the radiologist. So many things fall through the cracks unless the patient speaks up.
You do want the radiologist who did the MRI to review the bone scan and to specifically rule out the skull mets. In my case the guy who did the bone scan did not see any mets originally. When he got a copy of the CT scan a week later, he noted that, yeah, well, actually, there was evidence of a bone met in my sternum.
The contrast from the pet made me sick for days. like I had the flu. probably a good idea to drink a lot of water. and some wine and a truffle for good measure.
Looking forward to more good news tomorrow.
>Z<
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Hi ladies. I have skin mets now. I read the pathology report but it didn't indicate anything about the characteristics of the mets just that it's cancer and something about being lymphatic but the biopsies area was so tiny and shallow. I'm confused. Glad I'm going to mo tomorrow. The area is near and possibly over my port. That's seems no bueno. Hmmmm. I'm so behind on the thread. I really don't know anyone yet but I'd like to. I'll be around more. I value all the insight and support. Hope you all have a peaceful pain free night......Neddie
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Jen, interesting that they gave you an oral dye to drink. I usually get an intravenous contrast dye in my right arm, and after three scans, I haven't felt sick at all (knock on wood). I wonder if it's the type that is making you sick. Then again, if they want to see the gastrointestinal organs maybe they HAVE to use an oral contrast.
Does anyone else know what the difference is?
Lita
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I've had extensive bone mets since dx of Mets, June 2014. I had clusters in the skull. Nothing was making a difference until I was put on Kadcyla. The bone mets are now just scar tissue or stable, not growing. There is very little cancer shown on the skull, or bones.
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Jen. Great results!!!! Happy dance time. Hope today's tests are as good👍
Patty glad to hear you're home! There really is no place like home!
Mary Evelyn. When I first heard all the places I had bone mets I sort of freaked. My mo explained that the bones are just one big organ.im now Ned for my bones but have progression to my liver.
Starting IV chemo later today!
Yikes
Bab
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Lita, they gave me both the oral contrast and the IV one for this CT scan. I think it is because of the target to see the abdominal spacewell. Bleh.
Thinking of you Babs and hope it goes easy today.
So many new folks joining us. I'm a newbie here too (about 9 months). I don't have a lot of wisdom to offer so I stay pretty quiet but did want to say that I'm glad you found us and that the emotional ride does get easier with time, a treatment plan, and support
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Wow, lots of new info in just the past day. Two questions
One, I guess I was under the impression that skull mets were just another met, and not necessarily more dangerous than any other met. I have one. Is it worse to have a skull met because of the proximity to the brain? Or because it could be trickier RO treat with rads if needed?
Second, I have never heard of skin mets. Can someone explain that? Neddie, I hope you get some good news and information.
Thanks to all who gave me tips for getting through this esophageal pain from my last rads. I think I'm a tiny bit better this morning!
Mary-Evelyn, this is a great place for support and info!
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I will be thinking of you today, Babs... praying all goes perfectly smoothly and that your mbc cells absolutely hate today's infusion and give up! Big hugs and calming thoughts coming your way!
Great news that your brain MRI was clear, Jen! Fingers crossed your CT news will all be good too!
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Jen - Excellent news on brain MRI! Hoping the same for your other results.
Babs - Will be with you in spirit today as you start CMF.
Mary-Evelyn - I echo what all others have said. It's always overwhelming when we get that kind of news, you've come to the perfect place here.
Beatrix - Thinking of you and anxiously waiting to hear from your appt with MO this week.
I'm still waiting to hear back on the Ibrance trial. Imaging needs to be reviewed with trial team. Just left a message to my nurse to get some feedback before the week-end as it's Thanksgiving here. Tuesday seems too far away. I hope to be able to have Fas with Ibrance but not sure that is still a possibility as they must have recruited other participants by now. The other offer was Tamoxifen with Ibrance. Has anyone tried this combo or heard of it?
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hello to everyone,
I'd just like to say hello to you all as another with recent diagnosis of bone mets. I'm just trying to come to terms with it and what it will mean for the future. My kids are aged 6 and 11.Your thread looks like a warm and wonderful source of support.
This is 8 years out from an early bc diagnosis treated with surgery, radiation and chemo. Annoyingly it wasn't as effective as I'd hoped..
I do already have a question that I wonder if anyone can help with. Given the mets, I've changed hormone treatments from tamox to arimidex which I've now been on for a month. So far it isn't showing any improvement in my tumour markers. Should it not be having an impact by now? My oncologist didm't seem unduly concerned .. but I am! I'm also on Xgeva. Any advice gratefully received!0 -
kokocat. Hi welcome. Glad you joined us. Sorry to see another lady dx stage IV. I see you have a 6 and 11 year old - boys or girls? I have two boys 14 and 11. many of us have children. Have you told your kids anything yet ? Opinions vary greatly on when, how much we tell our kids. No definite right answer. Each family is different thus different choices are what's best for each of us. Be patient 1 month really isn't enough time to see much change in Tm's. keep in mind tm's are not accurate for all of us.
Lindae. Happy Thanksgiving What are your plans ? Getting together with sister ?
Babs. Thinking of you today hoping if chemo is treating you well take it easy today.
Hope faith / Neddie. Good to know your name. I don't know much about skin Mets. Just wanted to say post and read often and you'll get to know us quickly. And we are excited to get to know you. This group is like any other group of friends. Some people you will just naturally be drawn closer to thru experience and values but all people here are a great source of support and education thru experience .
I am enjoying being home. Went to town and ran errands today. Feeling exhausted and ready for a nap. Gotta remind myself to start slow .man that's SO hard.
Hello and hugs to all
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Kaption, my take from Dr. Google (so others please weigh in here with better info) is that skull mets are pretty much just like regular mets. They can penetrate the leptomeningeal, dural, or cranial nerve which is when it becomes problematic. I'm harping on it with my medical team because it's been suggested as a possibility and I'd like a little more certainty than that, and if I do have them to be able to discuss treatment now or in the future.
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Thanks Jen. You are wise to ask the questions and get clarification.
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http://www.massgeneral.org/News/pressrelease.aspx?...
I think this information applies to me I'll need to discuss it with my MO next time Has anyone had your HER2 status change?
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http://www.massgeneral.org/News/pressrelease.aspx?...
Has anyone changed HER2 status? I have and will ask my MO to discuss this with me next time
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Kaption, while I don't have bone mets, I've been reading this thread because so many of you are familiar from the Ibrance thread and I care about and pray for all of you but I've rarely if ever posted here. But I had to write to say that I remember a post from Stephanie LTS who wrote about the topics of changing status and if I remember right, she may have actually taken an estrogen supplement and then the tumors changed back to ER+ status. She may have talked about it in "The Radical Remission " book club thread. Maybe she will see this and weigh in.
Having anxiety right now. PET scan tomorrow morning. Praying for all of us.
Faith (in the future )
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Kaption, I was also told I had skull mets but was told it's just like any other met. I have no symptoms or pain
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Praying for everyone here, especially Babs and Faith.
Kaption, glad your esophagus is feeling better. It can take a couple of weeks, I'm sorry to say...at least it took that long for me - hope your discomfort doesn't last that long.
Welcome Kokocat!
Hugs to all,
Lita
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kaption. My her2 status hasn't changed but I read many people here have
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Thank Faith.
Prayers for you scan!
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thanks pattypeppermint, I will try and be patient. You and the other ladies are very inspiring.
No I haven't said anything to my kids yet and the thought fills me with dread. I will certainly wait and see how responsive the mets are to treatment before saying anything. To be honest, if I am able to live in a normal way, and things stabilise, then I am not sure I would tell them yet. I'll certainly scroll around here and find the various debates you've had on that. My oldest is a very sensitive child (aren't they all) who knows about my first cancer diagnosis in 2008. My youngest is adopted which brings some extra tricky issues of abandonment..uph, this will be hard, I've a lot to learn.
But I am so glad to have found this thread and I feel immediately less alone.
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For those of you getting CT scans with contrast be aware there are 2 different options for the contrast medium.There is the chalky Barium drink and there is Omnipaque. Omnipaque is clear and gets mixed with a liter of clear liquid like Sprite etc. I find the Omnipaque much easier on my GI tract. In our hospitals Omnipaque is usually given to in patients and for some reason barium to out patients. Ask for Omnipaque if you find the barium stresses your GI tract.
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koko. Glad you are feeling less alone. That's important. Feel free to jump in on any threads here
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After my first CT scan, my mo dropped the requirement for the barium so they just do them with contrast now. No more fart city!
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