Bone Mets Thread
Comments
-
How do I get on this contact list? Do I send my contact info to Deanna or have I missed the boat?
0 -
a couple more pics. Hoping others post pics too. Love seeing you guys and family that you talk about so often.
0 -
Ds2, great niece
and our dog Maggie
0 -
ds2 and me getting our silly on
0 -
hello lovely ladies!
Patty, hoping your tissue supply is holding up, I've bought another box.. :-) As for the weather, it is mid winter but we never get as cold as some parts of the US. Today we're expecting a max of around 22 degrees Celsius, minimums are between 0 & 6. I live in Pretoria & our winters are 99% sunny so they really aren't bad. Expecting a cold front to come through in the next few days & it could drop to -2 to 15 for a day or two, but then the sun warms us up again :-)
Carla, Dee, Janet, & all others getting scans & tests, thinking of you & hoping results are what we want.
Deanna & Andrea - it is so hard dealing with the people we love isn't it? This disease is so personal & there is so much going on in my head that I know I don't share with the people whose hearts are breaking with fear for me. My mom talks to everyone she can about me, her way of dealing. I was getting sympathy emails from friends of my mom's that I haven't seen since high school! It is frustrating, but I don't know what I would do if I was told my daughter had a terminal disease so I just smile & carry on. Her love & help is worth it.
xx
0 -
hey ladies. Great to hear from you
0 -
Deanna,
I totally agree with You on this one "And secondly, realize that maybe your primary support may need more support than he or she is getting".
Yesterday again was pretty nervous and full with emotions day. We had also conversation with my DH and in the end of it, he said, that he understands why caregivers needs care.
Dune,
do You have to arrive personally for meeting oncologist for a second opinion? Does Your insurance cover it or You pay Yourself? Approximately, what are the prices for "second opinion"?
Lynnwood1960 , Patty
I love the sun, too! Just I this summer I am sitting in my flat so much that there is a sun deficit in my mind and body:)! But I can say that when I traveled in South East Asia for one Year, then that Sun all the Year round was much too much
!freebird53,
for the good PET results! How often You must perform PET/CT ?
--------------
How Your oncologists make checkups for tumor - do You perform blood tests every 3 months (?) or regularly scans or something else?
0 -
Leva, on the checkups, being South Africa we don't do scans that often (I've only had at diagnosis last December & no more are planned yet). My onc does the CA153 blood test every 3 months. Plus physical exam since I haven't had any surgery. If blood test shows an increase in TMs she'll consider other tests / scans.
0 -
Deanna - thank you for pointing me to this thread.
I love all the pictures people have posted.
0 -
50sgirl - A warm welcome to you but sorry for the reasons that bring you here. There is so much knowledge, info, support and let's not forget humour. Chime in anytime.
Dee - Frustrating indeed! Blood mix up happened to me a few times but I have them taken at a clinic which is 5 minutes from home. Sorry, you shouldn't have to go through this crap. Good luck with MRI - 2 weeks huh?
Freebird - I hope you continue to do well - thinking of you. Good luck with scans.
Cristina - Good for you to get help. I must confess I have a cleaning lady every week and I love it. It's a partly subsidized govmt program here and I take everything that is available.
Leva - I have tumor markers done every month along with pre-Aredia blood work. It's too much but there were so many mix ups with the lab that my Onc decided to do everything every month. I have scans about every 3 to 4 months. If something comes up such as new pain/symptons, then there is in between testing.
Patty - Enjoy the pool and love your pics. Would you believe I don't even own a camera and my cell phone is pre-historic!
Kartz- that seems like nice winters to me up North in Canada.
Myra, Annie, Deanna, Dune, Sharon08, Andrea, Terre and all others I've missed - Have a great day.
It's another hot one today. Pretty sure that humidity is not the best for mets. Annie - hope you're feeling better. I am using breakthrough pain meds and they seem to be doing the job.
Edited to add Terre.
0 -
Linda - a friend of mine lives in Saskatchewan - cannot compare the winters :-)
0 -
Patty
You have inspired me and I am so trying to post pictures of my family fearful I will post them multiple times or not at all.
50s girl glad you found us. This is a great place to get support.
cjanet What a nice gift from your dh's work. Looks like a neat opportunity to be able to take a breath or two. I hope you can find a way to keep the help.I hope your scan has good results. I head for a pet scan tomorrow due to increased pain . looks like adding of afinitor if progression
hi to all running out to eye appointment.
0 -
Hi everyone, i haven't posted in awhile, i also posted on another thread, i don't know how to start my own convo. For my peeps that recall, it's about my daughter Dani, she is on Herceptin/Perjeta and Abraxane. She had a biopsy done in Dec and when it showed a change to HER2+ she started on these tx.(ER+PR+and now HER2+).
She is been having Pet-CT every 3 mos, and sometimed MRI bcs of many brain lesions. In May, they said she was stable, and we are learning to deal with that. The lesions sizes had not gone down, but it did not go up at the time.
Yesterday's Brain MRI done for follow up, showed mildly increase in at least 3 lesions showing minimal epidural extension across the calvarium (which i know she had lesions there), and other areas in the scalp.
My concern, first is if they thought she was stable as of last Pet 6 wks ago, how is it possible that this increase is coming up, albeit the use the word minimal ( minimal for them). Is the treatment working if there is an increase on the size of lesions?? Onco, did not seem much concerned, but i really can't figure it out.
They don't know if maybe radiation of some kind they would do, they are trying to avoid surgery, it's very confusing. They will be discussing among them and then let her know of what decision they came up with.She had Gamma done to the spehnoid areas and other parts in the skull, she has extensive bone mets. She had Stereotactic done to the spine and other areas.
Neurosurgeon was satisfied that it's not worse, and is gonna discuss w radiologist if and what to do to these areas.
I am very unhappy with the report because it does not state sizes, so i have nothing to compare with, just words. Neuro saw the CD, which is very good because he does not rely on the report, i just wanted for myself to understand better.
What does - "outer table destruction and extension into the scalp soft tissues" mean?? Among other stuff.I have to look it up to be able to understand better.If you could help me figure out what to do next, or even who knows if it's possible to get increase and still be stable??? Does that make any sense? Thank you guys
0 -
cjanet, please PM me your contact information and I will gladly update the contact list. And what an incredibly thoughtful gift from your hubby's co-workers!
50sgirl, welcome! I'm glad you found us. I hope you will find comfort and support as well as great information here.
Well I just got the results of the blood work I had last week. My CA27-29 and CEA are both way up. Just scheduled the CT and bone scan my UCLA onc wanted assuming this was the case. Darn! My TMs jumped from 140 (a previous high) to 251. Clearly Anastrozole has quit working for me, so it looks likes it will be onto Faslodex and Ibrance. Crappity crap.
Love the photos, Patty! The kids are adorable.
Hoping, praying, and fingers crossed your PET results will mirror how great you've been feeling, Carla.
Oh, and I totally relate to the comments on overprotective hubbies (mine is), and the frustration of not looking as sick as we apparently are, which is incredibly confusing to friends and family. I don't know which comment I hate worse -- "You look great," (yeah, it only took me 2 hrs. and a codeine to pull myself together), or "How are you REALLY doing??? (asked with an overly concerned look). Oh, well, I'm sure I was much the same pre-bc -- probably spouting similarly annoying comments to others in our situation.
0 -
momallthetime
So sorry for your worry. You may want to try looking at the brain mets thread for more info. I am not sure but I dont think many of us on this thread are dealing with brain mets.
0 -
3-16-2011 Thx - yeah it's a good idea, it just that I know so many on this thread...but i'll try what you said.
0 -
Just to be clear, she has mets throughout her bones, but now she just went for the brain MRI.
0 -
Good afternoon
0 -
Hey PattyPeppermint absolutely LOVE those pixs.
Re above convo - yep, that's all the reasons my daughter does not tell ppl about where she is at, if she has a good day she does not want them to ruin it for her, if she has a bad day she does not want them there, so there you go. I am glad i have this circle, bcs only our nuclear family knows about her, and i don't wanna make her sibs even more worry so i don't talk about my concerns to them, and so it goes.
0 -
I'm a newbie and wow! This thread moves so fast! I love all the positive vibes from everyone 😎
I also "look great" and "am doing so well"...ppl just dont know what to say to us "healthy" Stage 4s. I can't really blame them. I wouldn't know what to say to myself either. Besides, its better than hearing Shit! U look like hell! LOL (pardon my french
0 -
momallthetiime ~ we were posting at the same time and I didn't see your post until just now. I'm so sorry your daughter is dealing with this, but glad you stopped back to share an update and your questions.
I guess my first question would be, did the same radiologist read both the previous scan and the current one? If so, perhaps you could get a meeting with him or her for a more thorough explanation of what they're seeing. I suppose you could do it with whomever did the most recent scan, but it would just be helpful to have the same set of eyes that did the earlier report explaining the differences and choice of terminology, especially because there is always a bit of subjectivity in radiology reports.
I may have said this to you before, but I cannot stress enough that if you and your daughter have any doubts about her care of what you're being told, that is more than enough justification to seek a second opinion, preferably at an NCI-designated cancer center. I know I sound like a broken record on this, but it's based on first hand experience and the observation of what friends and acquaintances have gone through with both scenarios.
Please keep us posted on anything more you find out! (((Hugs))) & prayers for Dani and for you. Deanna
0 -
Hi all,
It's always a little awkward for me to post here, but I think of you all often and hope you are all doing well.
Deanna- Sorry about the tm's. Scans will be the final word, and things may not be as bad as you think.
Momallthetime- Sorry to hear of your daughter's brain mets. Yes, I remember that she had bone mets, but the brain mets threads might be more helpful in this case, as that's what the focus of her tx will be. The ladies on those threads are far more knowledgeable about that than most of us are.
Looking well, or at least not ill, is a mixed blessing. I am happy to look well, be well and live fairly normally, but, it's very difficult to make most people understand the seriousness of my bc. Additionally, since I've never had chemo, there are some who are totally bamboozled by my condition and even a few who think I am exaggerating things ("well, I had chemo at stage II, how could she be stage IV and never have had chemo?").
It is tiresome to explain it all, especially to those who doubt my story.
Take care.
Caryn0 -
Caryn, I also look very well and get the same puzzled look from people when they find out I have not had chemo. Some days it's too complicated for me to explain
0 -
Welcome JenLeg!
0 -
Hey Deanna - i had a chuckle at your expense when i read ur hmm situation w hubby. I would say being male, they would not come straight out and say: I am worried, or I need a hug, so that's how they get their attention. So could see it in any situation. I missed you.
The thing with the report is that it's being done now in a major Hospital and i called yesterday but they don't let the Radiologists speak to patients. I told the supervisor, that I (we) am not just a patient(i told them a sick person)m, but I am a consumer and therefore I should have the right to speak to the Rad. No. They feel very sorry, (yeah), but I have to spk w Doc. I have no problem if I have to, but I would like to know some numbers ( how big or small is minimal, or when they say "new outer table destruction etc...", how big is that, a tinsy thingy or something?? Then I beieve i would have a more intelligent conversation. They are thrilled that it's not worse, and that's their focus. I am stuck on the words. They did mention these changes, and they said they will discuss among Neuro, Onco, and Radiologist Onco how they will proceed avoiding surgery.
Sure i listened to you, thank you very much, you pushed me many times for me to have the guts to do that. You see, i am second hand you understand, I have to do it not in front of my daughter, bcs I want her to trust her docs(very important, she reads my vibes). And I have to be quite nice to Onco, which I am of course, bcs even if my daughter tells them all to spk with me, I am still not the patient. I could text her, but I would like to know from experience first if this business with "stable" and increase could make sense.
I am very lucky I have access to 2 other great Oncos, from different major Hospitals, one being a major Cancer Center, whom I have emailed and spoke to re-Dani, they even met with us, and they know we are with someone else, but I'd approach them once I have some facts.
So, this is where I am at.
0 -
Carla, I hope your MRI went well.
Deanna, I hope your tumor markers are so low.
Annie, what I am able to do is the major source of contention between mama bear and me.
Who said they liked the steroids? I thought that hormones increased your appetite. If they make you lose your appetite I'll start taking a whole one. I got ativan to control my nausea, and it seems to be working,
We're about ready to eat so I have to stop here and hope you all had a good day.
Those I missed know I read your posts and am glad to see you hear. I just can't remember what all is going on with which person.
0 -
Welcome, JenLeg! Looks like were also posting at the same time. I'm glad you found us, although I hate that you have reason to be here.
Good to see you, Caryn! Does your comment about feeling awkward posting here refer to the wonderful fact that you're NED -- something that inspires all of us? If so, I'm glad you stopped by today. Any more photos of your Alaskan trip to share?
The comments about what people don't understand about our dx illustrate how much we need to educate people about mbc. Holly Kitchen's #lifer video is a great starting point. I think there was a link to it back a few pages, and I think there's also a link to it on BCO's home page. If you can't find it and haven't seen it, let me know and I'll repost it for you here or PM it to you. I think it's so important that we continue to beat the drum about this -- especially with Pinktober just 2-1/2 months away! We desperately need to turn the tide and stop the obscene waste of money on pink donuts, etc., that people actually believe is somehow helping "the cause."
0 -
welcome Jen
Deanna. - hoping scans rule out progression and the tumor markers iare just a fluke orInfection. Praying for you as always
Hugs all around.
0 -
Responding to the discourse of "pity looks" - how true, how true! I sensed it and so far I only let one friend whose husband has two forms of cancer know my diagnoses of mets. I even haven's told my sisters who live far away, because I really really do not want anyone to assume I will be dead soon and really really do not need their pities for that. I really do not want to expain to anyone that I might die in two years, or three, or five, and how so. I appreciate my onc's style of treatment - simplicity. I just want to keep everything as simple as possible. When I am alive, everyone sees me alive. They could know I am dead when I do.
Andrea, I too very much love Italy, been there three times, always dreaming to revisit Florence someday. I've been to Greece once, love it also.
0 -
Jen, welcome!
0
