Bone Mets Thread
Comments
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Hi ladies I was wondering have any of you been told that you will not receive radiation in your breast since you have bone mets and wont cure the cancer will only effect the quality of life???????
Please lmk Mom and I were put back by this info,were completely expecting to get radiation.
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I was told they prefer not to radiate unless the pain was bad so they could preserve the bone marrow in case chemo was necessary
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jmo,
Are you asking about rads to the breast tumor or rads to the bone mets
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jmo,
Quite frequently, when someone is dx'ed at stage IV from the start, no treatment is directed to the breast (I.e. Radiation , mastectomy) . Some have had mastectomies after a stage IV dx, but not always. The cancer in the breast is not the danger (no one ever died of cancer in the breast only) it is the spread to other areas that is the concern
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Just checking in to see how everyone is doing, especially Patty and Carla. Hope you are both feeling better. Patty, hoping you get home with your family soon.
I felt better today. The pain was a little more manageable, whew! I took my 3rd dose of Ibrance and Femara tonight. So far, I feel fine and that works for me!
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Hi Linda, you didn't forget to remind me, but I'm glad you did because I had forgotten. Now hopefully I will remember tomorrow when I'm there! I won't be home again until late Friday night or Saturday morning, so I'll post then. Cheers, Dee
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Hi all,
Auroaya - enjoy Cancun. I am sure I've spelled your name wrong, but oh well. Estrogen starved brain R us.
dlb - Five and five in two days...ick! I do the same thing now...two sticks and you're out. Last CT scan/blood test, they both got it on the first try. And didn't even use my hand for the CT scan, which was great.
Linda - a month for results. Bugger. I'd be crazy. Sorry you're depressed. I know the feeling - depressed for no apparent reason. Been going through that a lot myself lately and don't know why. I had good scan results! Mine is mostly stress related, I think. That's part of why I'm volunteering at Kitten Inn; I need some pure joy in my life and to feel like I'm doing something good for someone. Or someones, in this case - lots of kittens.
Dune - sorry your jaw is still sore. Mine's having sympathy pains; feel like my ONJ is trying to come back so need to get my antibiotic script filled.
Glad you feel better Romansma.
Myra - good luck with finding funding. Fingers crossed for you!
Dee - don't want to scare you, but if your symptoms persist, get to ER quickly. I'm guessing the problem here exists there - they have Legionella cases from damp/mouldy soil/compost. So please don't mess around with your reaction if it persists. Hoping it's just an allergy - I have a mould sensitivity and get miserable as all get out from it.
ibcmets - hope you're doing well. Great advice above.
Dune - they don't know why Harley isn't growing. They have two that aren't growing. Apparently it's not uncommon when they're taken away from their mothers at one or two weeks old. I can guarantee you that Harley eats a LOT. And they feed them premium kitten food. He is hysterically funny. I'm hoping for some video at some point.
I had a long day today..it's almost 9 pm on Friday. I caught the 6:30 am train, flew to Christchurch at noon, and flew back to Welly arriving 5:30 and got the 6:15 train home. Then the stupid rail crossing was messed up so I sat at a light for 20 minutes and didn't get home until almost 8 pm. Got to sleep on the plane though, so that helped! Other than the sore knee, I feel pretty good. Need to see if I can talk the GP into another cortisone shot.
Tomorrow is the Otaki kite festival at the beach. They bring in these huge kites in cool shapes. Last year, there was a whale and a giant crab. I'll get pics and post them for you all.
Hugs to all,
Terre
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JMO06 - It can be confusing at first. I was diagnosed Stage 4 from the beginning with bone mets. No breast surgery or radiation. I did however have rads to several bone mets which greatly helped for the pain and quality of life.Linda
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Hello to all,
Patty and Carla, hope you're both feeling better.
Romansma, glad to hear you're feeling better and that your pain is a little more manageable. Wishing you the best on this new treatment.
Terre, I don't know how you manage such long work days, don't think I could do it. I'm happy that you're feeling good, and the volunteer work sounds very rewarding. Can't wait to see some pics or a video
Linda, wow a month is a long time to wait for results, I would have a hard time with that. Sending positive thoughts for good results! I'm feeling a bit of the winter blues here too, can't take much more of this extreme cold and snow. I really need to feel the warmth of the sun. I've been extra achy the past few days but I've probably overdone it too.
Looking forward to a restful weekend, hugs to all, Annie
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KCM, I have gotten much worse overnight, so I will see the Dr at 11 this morning. Will post results. Cheers, Dee
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Sending positive thoughts your way Dee. I'm praying it's just allergies.
Hugs to all,
Terre
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Damn. Just called my onc's office and learned my TMs are up -- from 77 three months ago to 90 this week. I feel so defeated, deflated, mad... I know some of you are dealing with much more pressing issues, but this is just so frustrating.
Patty, I'm concerned that we haven't heard from you today. And Dee, I'm glad you got into see a doctor so quickly. Let us know what you found out.
Enjoy the kite festival, Terre. It sounds like fun. I'll also look forward to some photos. Deanna
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I'm sorry Deanna. I can understand your frustration. Are your TMs usually reliable? If my memory serves me right, I think you mentioned you were planning to have a scan at the beginning of this year? Hoping your TMs are not reliable.Romansma - very happy to hear you're doing fine on Femara/Ibrance.
Dee - hoping it's just an allergy and that you're feeling better.
Patty - I'm also concerned about you. Keeping you in my thoughts and prayers.
Dune - how did your "sim" go?
I got the results of my blood - we've been testing my calcium level almost every 2 weeks lately. It's at the maximum of the range but at least stable even with the reduced Aredia dosage.
Wishing all of us a good week-end!
Hugs - Linda
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Hi All! Got in to see the Dr (a locum unfortunately) she doesn't seem to think it's anything serious, just an allergic reaction to the mold. I am a tiny bit better tonight, but still with a horrible raspy cough. She wanted to put me on antibiotics but I wanted to wait to see what happened this weekend. If I get worse DH will take me over to the hospital emerg. I'm going to have a hot rum with honey & lemon before bed.
Linda, I'm getting 90mg, which is what I thought, but wanted to check. Everything I read on the internet, yes, I know, the fountain of all wisdom ;-) says you should get 90mg over 2-4 hours but I get it over about 90 minutes. They are going to start testing my albumin every month too, do you get this done? Previously I have only had my calcium & creatinine done.
Deanna, I hope that this is just a blip in your TM's. fingers crossed
Hello to everyone else, hope you're doing ok, Cheers, Dee
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Dee - glad you saw the doc. Didn't mean to panic you in any way, but it's been big here (Legionella in soil). They are advising to wear a dust mask, gloves, etc, and open the bag when standing downwind, etc. Seems to be a relatively new thing here, over the past couple of years. Not something I heard about in the US. So I am so happy it's an allergic reaction and that you saw the doc.
Deanna - bugger. Hoping this is a minor blip and nothing more.
Maybe watching the New Zealand "bugger" ad will help... It's a classic here.
Patty & Carla, hope you're doing better.
Dune - how was the sim?
Glad your calcium is stable, Linda.
Romansma - really excited about your drug combo; it something my MO thinks I would do well on once it's approved here, so hoping it works great for you. So glad it's not causing SEs.
Well....my ONJ seems to be back. Went to Quick Care and told the doctor I was self-diagnosed. He concurred. Glands are swollen and I can feel the gum starting to split a bit. So, back on antibiotics. Hoping to nip it in the bud before it gets worse. Had a 90 minute wait which wiped out the kite fest for us today, but hoping to go tomorrow.
Hugs to all,
Terre
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Interesting article: http://medicalxpress.com/news/2015-02-scientists-m...
Let's hope they fast-track this research!
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KCM, Sorry to hear that you're having problems with TMJ again, so painful, I hope the antibiotics nip it in the bud. The research looks interesting, there is alot of new stuff coming out.
You didn't scare me, I saw about Legionella (sp) as well & wondered. I'm not sure that she really took the time needed to really diagnose me, but DH & I are really going to keep an eye on me & if anything is awry he says I'm on the next ferry to the hospital. I have my overnight kit in the car.
I've taken a sleeping pill along with a tiny bit of rum, honey & lemon in hot water, so I'm just hoping to get a good night's sleep. Cheers, (hic) Dee
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Cheers, indeed, Dee!
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Thank you Dee and hope that nasty bug or whatever it is is out of your system. Yes, they test me for albumin.KWC - bugger! ONJ
Linda
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Hello everyone,
Patty, thinking about you and praying you're home from the hospital and feeling better.
Terre so sorry ONJ has reared its ugly head again. Hoping you get it under control quickly and feel back to normal.
Dee, hope you had a good night's sleep and are feeling better today.
Deanna, sorry to hear about your tm's but please don't panic as many things can cause them to rise. When is your next scan due? Praying this is nothing to worry about.
Well I've been having a rough couple of days, alot of pressure in my sternum is making me feel short of breath. Not sure if it's scarring from the rads but it's very uncomfortable, feeling like I have an elephant on my chest. I will mention it to my onc on Friday when I go for my infusion.
Wishing everyone a nice weekend, Annie
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KCM thank you for that fascinating article. I have always thought there had to be some kind of "trigger" that turns on for some reason. Please G-d they will find that trigger in our lifetime.
GG27 do you live on one of the Gulf Islands? My DH and I took a bike trip thru them for seven days. MAGNIFICENT!
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Annie, aw sorry to hear you're having a hard time of it. I had kind of a similar thing happen last year & the pressure on my chest made breathing very difficult. They actually saw a section of my lung that was collapsed, they weren't ever able to figure what caused the problem but it did go away after a couple of weeks and my lung function is back.
Myra, yes I do live on a Gulf Island, Gabriola (hence the name GG for Gabriola Girl) We have lots of cyclists that come here in the summer & tackle "The Brickyard Beast" which is about a 5km long steep hill.
I'm "ok" today, I always feel flu-ish after my pamidronate & my bones ache, so on top of this breathing/coughing thing, I feel like sh*t today, but I'm sure once I've been up a while, had some coffee I'll feel better.
Have a good weekend, Cheers, Dee
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Patty and Carla --How are you doing with the c. Diff.? Patty, I hope you're back home or will be soon.
Terre-- Thanks for the interesting article. Reminds us to never give up hope because you never know what's around the corner that could change our situation for the better. Sorry to hear about the ONJ returning. It's good that you can self-diagnose and catch it early. I hope it's back under control soon.
I hope everyone who's having a struggle right now soon finds relief and feels better soon. I am well and feeling good and I wish that for all of us. Enjoy the rest of the weekend and know that you are always in my meditations and prayers.
Sharon
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Hi all,
The ONJ is better today; not nearly as sore. Yea! Hoping to make it to the kite festival this afternoon for a bit.
Annie - go find a mouse and scare that elephant off your chest! Seriously - I hope they figure it out quickly and get it sorted. Sounds like no fun at all.
Dee - sorry you're feeling so crap. Allergic reaction plus infusion = yuck. Hope it passes soon.
Sharon - the hope is what I hold onto as well. Glad you (and others) found the article interesting. The advances are coming so quickly! My MO goes to international breast cancer conferences and he is reasonably confident that we'll at least have this as a long-term manageable condition if not a cure within the next few years. As I've written before, I know of people at death's door who were given a clinical trial and went on to live many years afterwards with a great quality of life. My mom's friend was dx in the late 1970s (when he was in his late 30s or early 40s) and is still going strong. He's retired now, but he worked until he was 67. Now he and his wife travel and golf.
Hugs to all,
Terre
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Hi auroaya. It can, indeed, get very exhausting. However, I pray your time in Cancun will offer the respite you need for now.
I'm sorry that you have been feeling depressed these last few days. You are having a lot of scanxiety (interesting word). I get that once in a while, but I mainly used to feel that it was just information. I don't worry about scans and tests now. Instead, I worry about what's going on in my body every day. Over and over I have to let it go. All that we can do we are doing. I think the same way of thinking could be applied to scanxiety, though.Who is going to Cuba? I forgot. LOL. Anyway, that should be an amazing trip.
Hi Linda and Deanna. The sim went fine. They have my mold. I have my marks. I start on Monday. I also go back to work on Monday. I doubt very much I will be able to sit for that length of time, but we will see. I'm quite ready to quit, but my mother doesn't want me too, and believe me she will make it known every day that she thinks I should be working. At the same time, she doesn't want me to work too much these next couple weeks. She doesn't want me to work extra days to make up my time. I can only work half days because of the radiation treatments. She just doesn't understand that the supervisor who is there now is not the same as the one that she had. This one wants people to work their hours. They are very flexible there, but she will be unhappy if I only work 2 half days this week. It's called "between a rock and a hard place." LOL Oh, and Deanna, I sooooooo get what you are saying about poor techs. Personally, I cannot afford a bad tech. I have one vein in one arm and that one is apparently getting a lot of scar tissue. Then we get to move to more painful areas. My worst experience was in Johns Hopkins. They must have a rule of 3 strikes and you're out. One nurse tried 3 times. A second nurse tried 3 times. Finally, they got a guy from the ER. He got it the first time. Those nurses treated me like crap the whole time I was in there, like it was my fault they couldn't do it. It was a baaaaaad experience.
I was told what jmo was told. They no longer had any interest in my breast, and after it got so much attention, it felt a bit put out.
Romansma, I'm glad your pain was more manageable today. It's great news that the Ibrance-Femara combo is going well.
Terre, I'm sorry you've got this thing. Of course, I'm only assuming ONJ. I still have a few weeks at least before I can see the oral surgeon. I have approx 3 antibiotics and am seriously considering taking them. I know they won't do much good, but maybe some. It's becoming quite a pest. Because it is swollen, I have bit my lip twice now. Now, the outside of the skin there is numb. The teeth are numb. The gum is numb. The inside of the lip: not numb. It puts even more of a damper on dinner. lol I'm looking forward to Harley video. I'm trying to think of how to set up my video cameras to catch Dusty engaged in some of his antics. He's just like a kitten: jumping at imagined threats, crown up, running back and forth, flapping his wings, sometimes flapping himself right off the cage. He is hysterical. Such a sweetie pie. I'm looking forward to pictures of the Otaki kite festival too. They should be interesting pictures.
Patty and Carla, I hope you are feeling better0 -
Most of you seem to generally be faring pretty well. I seem to be going downhill fast? Am I just being a wuss? I'm in a lot of pain. Most times I can't stay up long enough to have a second cup of coffee, and I love my coffee. In the evenings I have a fever of +2 to 2.5. (I run low, so my 98.9 temperature of last night is 2.6 higher than my normal temperature of 96.3 this afternoon.) Sometimes I have terrible level 10 pain, but mostly it's just a miserable all over ache of maybe 6 to 8. There's this jaw thing. And how does a boat load of cancer take over my left pelvis in just one month? Do you ladies feel this? Should I be less wimpy about it?
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Dune - you're not being wimpy at all! Your strength amazes me. You're being amazingly patient with the process in my opinion. I'd be a raving lunatic. I kind of am a raving lunatic, but I would be even more so. I so wish they'd get your pain under control. Can't even imagine how miserable that must be. Amazed you can work at all!
The antibiotics I started yesterday afternoon have cleared up a lot of my ONJ already and I feel so much better. Still sore, but swelling is almost gone and not nearly as sore as yesterday. So..if you have them, you should probably take them. If it's an infection in your jaw, you'll know pretty quickly once you start because within a day or so, you'll feel less pain. I am so hoping and praying that they get you on an AI that works for you, and quickly. I am guessing that you're feeling like I did when first diagnosed - how the hell did my hip, femur, spine and rib get so chewed up so quickly? But I'm also guessing you're feeling even worse because progression is undoubtedly even more terrifying.
Would love to see video of Dusty - he sounds like a character!
Sending hugs,
Terre
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Dune - I'm the one going to Cuba! and I'm the one going through scanxiety. Oh well, I figured I have to do something with this crazy weather and waiting. I started painting again, mostly abstract painting. It doesn't look good, but who cares, I'm having fun! and my hands and clothes are full of paint!You're not a wuss!!! What you're going through is hard. Freaking pain is hard to live with. I had so much pain for 9 months after my dx and went from one surprise to another (met on femur did not light up on bone scan, emergency surgery to prevent fracture when it was found 4 months after dx, new met on iliac) now it's manageable mostly thanks to rads to several places. I found the first 6 months after dx was a real roller coaster. And yes I was wimpy and had every right to feel that way. I hope with all my heart that rads will take care of your pain hip and that a new treatment stabilises everything. And that the oral surgeon finds out what is going on in your jaw. Gosh, this has been going on for a while. I would also be a lunatic as KWC said. Healing vibes coming your way.
Hugs - Linda
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