Bone Mets Thread
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Deanna...I think your message from your oncs was right on, don't you, even hopeful. I like that.
Glad you got to party w/grandies, Dune, and a long drive w/the guys, Patty.
Cjanet...I so hope they zero in on helping the pain go away! Is there a reason for a biopsy???? Hope you bring it up w/your onc.
Hydranne...OMG...scary about your furnace...ugh! We had a gas fireplace installed in San Diego...for "ambience." That evening, friends came for dinner & afterwards we all sat around yawning. Our son came from his bedroom saying it smelled like gas. We were all slowly being poisoned & not bothered at al!!!! Crazy! Hope it's not a spendy fix!
Kiwi...dark choc is my fix! Annie...80s sound good, muggy, maybe not :-)
My kidney function took a little dip last week...so very odd. Even on chemo it was fine. They think dehydration, I've been walking & swimming more than normal (not THAT much) but why does there always have to be something.
I know some of you have posted to Penny...I, like you Deanna, had a hard time finding the right words....but, if it works for you, please pray for her healing & peace. Her oncs said she may have only 2 weeks-2 months, and though we know they aren't in control, her body is weak. They're amazed she's functioning, bless her heart & soul. I know she feels our love. What would we do without each other. Love to all.
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Hydranne, I was where you are with our furnace and I wasn't feeling too well at the time either. Turned out the heat exchanger was cracked and we got red tagged. Right in the middle of the coldest winter, the girls were 5 and 3 and we were given 3 days to get a new furnace and I had to go and rent space heaters to keep us warm. Thank God though I had it checked out or the technician said we would have died of carbon monoxide poisoning, scary!
Deanna, so glad your onc calmed your fears and what was said is so true!
RonnieKay, hearing what Penny is going through has made me very sad, brought me to tears last night. She's given so much support to everyone here and it saddens my heart that this is happening to her, I pray for a miracle for her.
Hugs to all, Annie
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cjanet it's important to control the pain. I had a lot of pain in my right hip and lower back in 2013 and had difficulty walking and hitting the brake when driving. Had 15 rounds of rads which helped. Now my left hip is bothering me and feels like my right hip did (glad I have an automatic transmission or I wouldn't be able to drive a sick shift now). Been taking Tylenol and a low dose of Oxycodone, Spoke to my onc and have scheduled an MRI to see what is going on before I decide whether to have rads to the left hip. Maybe you can ask your onc to schedule a scan for you to see what your body is up to.
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Good morning ladies,Just popping in hoping we're all doing well.
Linda
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morning,
Looking through this thread for some guidence today. I will be learning the results of CT and bone scan this afternoon . Preparing for news of further metastisis. Seriously considering refusing my Oncologist reccomation of chemotherapy. Synthetic hormone blockers seem to work for about a year as I have been prescribed three now . Has anyone had success with Indocole -3- carbonyl ? Praying for us all
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m&m - hope the ct and bone scan results is good news
Wow only 2 posts all day yesterday. Where is everyone at ? Was there a sleepover I didn't get invited to last night ? Lol. I hope everyone is ok and doing doing so well they don't have time to post.
Monday I went grocery shopping and got 2 weeks of groceries. A lot of walking and lifting. I was a little sore that night but yesterday I felt great. Dh has been doing all the shopping for neatly 2 years. It felt so good to be able to do it. Wow. Prices sure have went up. Oh my ! The exercise felt great and taking some burden off dh was great also. The lifting was the worse but ds's are out if school after this week so I'll take them with me next time. ( yes def there will be a next time )
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mmccall ~ Welcome to this thread! I'm so sorry you're dealing with this decision. When I was first dx'd in 2008 (Stage 2 w/some complications and a long, dragged out tx detailed on my bio page), I had a horrible experience (a passing out episode) with Femara, so after a lot of reading and soul searching (b'cuz I've always favored holistic and natural medicine), and against strong pleading from all of my docs, I decided against trying another A/I and went with I3C. In truth, I didn't stick with it for more than a couple of years, and I may not have been taking enough of it. But here I am today -- dx'd in 2014 w/bone mets. So from my experience, I'm not convinced I3C was all that helpful, and I have certainly stopped recommending it to early stage women who are fearful of taking an A/I. Of course, your situation is quite different, and your body's response might be as well. But that's my experience with I3C -- basically feeling it did little or nothing to prevent my re-dx.
Patty, so glad you were able to grocery shop! YaY! I worked in my antique mall spaces yesterday for about 3 hours, lifting smaller pieces of furniture, re-arranging, etc., and my back and ribs were on fire last night. But after a Xanax-induced sleep, I seem to be fine this a.m.
Hydranne, so sorry about the furnace issue! Having mbc (and for those of us in the US at least, the accompanying bills!) makes dealing with those sorts of things so much more frustrating. But glad the problem was identified before it made you sick or worse! And glad it's not smack in the middle of winter, as Annie's was!
RonnieKay, I can't stop thinking about Penny, and just wish I could figure out something positive to do with my anger and frustration that another beautiful young Mother has been told she's out of tx options. Makes me so incredibly sad, but also angry that we aren't further along in finding answers, and beyond furious that some cold-hearted individuals can scam and live off of $187 million in donations that are so desparately needed for research and other meaningful uses. I'm just so angry when I think about it!!! Hugs to all! Deanna
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Patty you're a hoot! I'm so grateful we have each other.
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I appreciate your insights. Thanks so much .
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I just had a bone scan today and I thought I could actually feel the tracer bind to my sacrum.I have a large met there. It did hurt quite a bit for about 20 min. Any of you been able to feel the tracer?
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Patty - congrats!!!
Deanna - I hear you. Just disgusting that people let greed take over.
I'm still fighting this stupid bug. Nothing like fighting cancer, but it's just annoying as hell. Made it to work Tuesday, went to the doc yesterday and he said it's an inner ear virus that has to run its course. Gave me "real" sudafed (controlled substance!) to see if that helps. Took it yesterday. Dizzier today than I have been in several days and mildly stoned. Not fun. But counting my blessings that it's nothing more serious.
Hugs to all,
Terre
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Lynn - no, never had that feeling.Patty - Woo hoo! I still manage to walk without my cane about 90% of the time! It feels great.
Terre - Crap bug!
Having my CT scan Saturday and should get results of CT and bone scan on Thursday the 28th. Keeping my fingers crossed. I'm keeping very busy and my mind occupied.
Hugs to all - Linda
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Sending good thoughts your way, Linda.
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Thank you ladies for the welcome . News wasn't what we were hoping for , it appears my bones are stable however the scans showed four small spots in my liver. Onc is suggesting a new drug just approved by the FDA that enhances the A/I . I should be grateful for the available options yet I struggle with the possible side effects especially the "rare" ones. I have been optimistic, changed my diet, added supplements, followed conventional treatments and it still progresses. It's so disconcerting. Peace my new friends
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mmccall- sorry about that progression, that really sucks. SIde effects are so scary to me, so I get what you are saying. And you don't always have to be optimistic and grateful! Give yourself time to be sad and angry too for what BC has robbed you of. I think it's ok to feel that way sometimes. I have to pull myself out though bc I've got screaming kids running around that I have to care for. I really hope your on puts together a manageable plan.
terre- feel better!
My question to you ladies is what kind of exercise can I do with all these mets in my neck and spine? Every time I move or turn I hear noises from my neck and spine. I love yoga but I'm scared to do anything bending over w my neck. Should I just stick to walking?
Saw the pain management doc- he increased my oxycontin to 20 mg twice per day and also prescribed a fentanyl spray that will be mailed to my house. It's called Subsys and only for us special cancer patients. Anyone here use it? He wants me to stop Percocet and use the spray instead. I'm also allowed to use ibuprofen for inflammation.
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mmccall - I don't know how I could have missed you as a newbie on this thread but wish you a very warm welcome. So sorry about the results of your scan. What your Onc is suggesting could be Ibrance which was approved in Feb. Below is a thread with a lot of info from our metsisters currently using Ibrance. I hope this helps. Sending good thoughts your way and wishing you the best with your tx. Keep us posted.
https://community.breastcancer.org/forum/8/topic/828848Cristina - Never heard of Fentanyl spray - sounds interesting. As for exercises, I suggest you ask your Onc what you can and cannot do. I had input from my Ortho as well as my Onc. For me, it's now walking, mild stretching and exercises given by an Osteopath. I was very active physically prior to my dx and admit I found it hard to stop certain physical activities. I tried different floor exercises at some point and that triggered a lot of pain for me. Your body will tell you - but listen to it! LOL Glad you saw a pain management doc - hope you're pain free. It changes our lives!
Thank you Terre.
Dune - Are you leaving on a trip shortly?
I had an acupuncture tx yesterday - I feel so good this morning. Today is my psychologist and a bit of pampering as in pedicure! Long overdue.
Good day to all - Linda
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Ugh, just wrote a long post and now I lost it!!!
Well, here I go again, Welcome mmccall, sorry about the progression, I am one of the Ibrance girls. Please feel free to join our thread . It is a group of knowledgeable, caring women. Unfortunately there are also a bunch of what seem to be younger women for you to commiserate with.
Linda, have fun pampering! I too am scheduled for a mani and waxing while my counts are up. Keeping you in my thoughts for good scan results!
Patty, you are so funny! I too missed the pajama party
Deanna, the greed of these people infuriates me also! Here people are fighting for their lives and these a***holes are having the time of their lives!
Terre, feel better already....those kitties miss you...LOL
Well, that's all for today. DS and DIL are coming in this weekend. We are having a small baby shower for her. Will try to post pictures if I can figure out how. DS is a network engineer, gives me lots of IT faces, but he does come in handy 💽💾
Myra
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Myra - yes pics please
Mm - is it lbrance you are adding ? Whatever it is I am sure you csn find first hand experiences here on bco
Dune - how you feeling ?
LindaE - hoping your scans turn out good. Waiting is the worst part for sure
Deanna - hugs
Hugs all around. Hope y'all are having a great day !
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Just started a new thread: LETS GET ORGANIZED! Please post your suggestions to get things moving. I will carry it along as far and as best I can. Enough is Enough. Myra
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Hi all,
Welcome mmccall. Sorry about your progression but glad you found us.
I missed the pj party too...must have been in bed.
I'm now taking pseudoephedrine so am tolerating jokes about being a meth head. It does make me a bit stoned. But has helped the dizziness quite a bit. Still home from work, but hoping to go back Monday fighting fit.
Foster kittens are getting big; all but one are over 600 grams. When they hit 1,000 grams, they go away. Will be hard, but looking forward to them having happy forever homes.
Sorry I'm too brain-fried to respond to much more. Hope all are doing well.
Hugs,
Terre
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Hello ladies. I'm so tired of being sick & tired. I bet there are a few of you who can relate. I still have to pack, but hopefully I can do that tomorrow. My hair seems to be coming out, but I just try to treat it gently. I just wish I knew what it was doing. Like, why does my stomach feel upset so often? Why do I have trouble catching my breath? Why am I so tired? I have to bring more game to this bar. Being paged for dinner. Sigh.
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Dune - Have a great trip! I'm sure it will give you renewed energy. Don't forget pics.
Terre - You're really going through the wringer! Hang in there!
Linda
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Have a great trip, Dune!
Thanks, Linda. I'm getting better (finally). Hopefully be back to normal if I just lie low this weekend.
Hugs to all,
Terre
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Dune...welcome to chemoland. You gotta wrap your sweet head around the fact that it's beating the crap outta bad cells...that'll make you feel good for...20 minutes :-). Have a fun trip..savor each moment!
Deanna...Amen to using money to truly find a cure...it IS a race...so take the $45 each person pays, skip the tv personalities, donuts, decorations & cure people! There are such brilliant minds out there...too bad the critters developing warfare, stealing my debit card numbers, etc, have endless funding to go about their jobs!
Patty...you go girl...grocery shopping earns you a major nap & bowl of ice cream! DH does the grocery shopping & when I go with, I'm stunned by prices...and just say no. On more than 1 occasion, he's said, "this is a special guest appearance by my wife"...fine w/me!
Mm...sorry for spots in liver :-(. It just doesn't make sense that one place clears up & another is affected. Come to our liver mets when you're ready...lots of love there too.
Kiwi...OMG...I read pseudonephedrine & instantly thought meth!!! I was a school secretary....had my fair share of those goofy parents & teens in the office! Glad it's giving you legal relief :-). If you were in the states, you wouldn't have to work til Tuesday!!
Love to all...prayers for peace & healing always!
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Hi, im posting this on behalf of my mom. She was diagnosed with stage 4 breast cancer with bone mets 2 days ago. Despite annual mammogram scans, she was still diagnosed at such an advanced stage. She is coping fine and staying very positive, both me and my younger sister we are trying very hard to stay positive also. We are meeting the medical oncologist again on Monday to discuss about treatment options.
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Qi...bless you & your sister for seeking support...blessings to your Mom for being strong & determined. There is much hope & the gals here will take you under their wings & guide you all! Wishing you confidence & compassion from your onc team in finding the best treatment.
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Welcome QiXian_Ho. Ladies - I recommended that QiXian come here for advice and info.
RonnieKay, I've been joking that I'm going to cook up some meth. Love the "special guest appearance" at the grocery store...too funny. I'm going to put in a guest appearance - we got a $30 voucher for the store. They have a loyalty program and you get a voucher every 3 months. This one is a good one. Will keep the cats in kibble for a week.
Tonight is my night to cook, so fish and chips it is! Or Chinese take out.
Have to swing by the vet's office to pick up a gift - kudos to Royal Canin cat food, who have donated a bunch of food to my foster kittens! They eat like little piggies. And they're super playful and fun to watch.
It's Friday here...hope everyone has a good weekend!
Terre
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Is there a reason no one on this thread has commented on getting mobilized for more research funding? Myra
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Not sure I understand your question, Myra. I did go to and commented on your Let's Get Organized thread, and it just seems to me that this is something that needs some serious brainstorming and direction, as well as a concerted effort. The problem, as I see it, with merely writing letters to elected officials is that the NCI budget has been decimated in recent years. There's just not enough money to support even the amount of research that's been done in the past, so to some degree I see letter writing as helpful at possibly raising awareness with a few individuals, but that's probably all it will accomplish. I've been thinking about it a lot because I feel strongly that we need to change the status quo re. the perception of this disease, as well as get more research funding. I'm just not sure where to put my efforts, and keep coming back to the belief that we need some serious brainstorming with people who have all sorts of input and expertise. Deanna
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Hi all.
Back from Alaska and photos will follow. I had to go slow but did everything I had planned to do. Yay!
Myra, have not had a chance to read your thread yet but I will.
QiXian, so sorry to hear about your mom. Don't give up hope - you are at the beginning of this journey and have lots of options ahead.
Forget who was talking about us getting less than the truth from rad ones. Had rads a few months ago. My RO would NOT admit that rads had any side effects. Even when a large part of the skin on my chest wall slid off. Not even when I got Radiation Pnuemonitis. Fired her but they all seem the same!
Lunch over. Photos later.
JJ
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