Bone Mets Thread
Comments
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You might want to repost your question in https://community.breastcancer.org/forum/8/topic/783594?page=92#idx_2745 (Topic: If you are NOT stage IV but have questions please post here). I'm new to bone mets, but it seems that scans can generally distinguish between bone lesions and arthritis, so you should have an answer soon. Good luck.
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trini,
Yes, it is understandable that you want some feedback on your post. Please follow the link that carpet diem posted above. That is an excellent thread for those who are not dx'ed stage IV but have concerns and questions.mtake. Take care
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AAARRRRGG!! Hospital just called, I have to get back on the ferry to get bloodwork done again, I was just there yesterday & will be back over on Friday. Don't know what they did to it, but somebody screwed up. Was so looking forward to a day at home with not a lot to do. BBL, Dee
Annie, That's so scary, one of my nightmares is dying from asphyxiation. Hope it never happens again!
trini, I saw your post, but I didn't really understand what you were asking. Follow the link above & I'm sure you'll get some answers.
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So many posts and members on this thread! It seems like it's a bit hard to keep up with everyone! Romansma? Patty? How are you both doing?
Darn, GG. I can't believe they're making you do an extra trip when you'll be back on Friday anyway. Are you sure they can't rethink that for you?
And Annie, what a scary episode you had last night! So glad you're okay.
MissingAlley, I had mets in my bone marrow (as well as my bones), but thankfully my ortho surgeon said he was able to remove much of it when I had surgery for pathological femur & pelvic fractures. I've never heard it called "pre-bone" cancer. I just think those little bc cells can set up in the marrow, as well as in the bone, if that's what they decide to do.
And as far as second opinions, I personally think it's a HUGE red flag when a doctor gives us any flack about getting one. It screams ego, and that's a real concern in medicine. When I told my original surgeon that I was going to UCLA for a second opinion but would be back (which I believed at the time), her response was something like, "That's what they all say, but they never do!" Boy, was that an eye opener!
Skylotus, YaY for the regression in the liver & lung mets! And are you sure what you're seeing in the boney areas is progression, or could it possibly be healing, which can look the same on a CT and needs a skilled radiologist or onc to differentiate and sometimes make a judgment call.
Hugs to all! Deanna
Edited tonight when I noticed I'd mixed up GG & Annie in my comments above. Sorry!
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I have a question about bone mets and pain. My mets were found in October during a ct scan for another concern, I had not had any pain. I have had two rounds of taxotere, Herceptin and perjeta and I am noticing some back pain. The pain seems tied to working at my desk, however it seems different from typical muscle strain. My question is, could this mean that the treatment is not working? I know that the treatment can cause some aches, I just wonder if it is possible for this treatment to be ineffective?
Thanks for any input.
Kim
Also, I had a friend call today to tell me her daughter's friend is going to Hamburg Germany for a stem cell "cure" for her stage four bone cancer with bone mets. I feel like we would have heard something if this was possible, just wondering what anyone has heard about stem cell research? I am surprised by how little information I am finding online.
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kw, my guess is that two rounds of chemo/Herceptin would be too soon to tell if this combo is working for you, and that your back pain is probably more due to Taxotere, which certainly can cause body aches that would logically be exacerbated by remaining in one position too long. Have you reported the pain to your onc? I would absolutely want him/her to know about it, just to be sure. But my guess is it's the Taxotere. (((Hugs))) Deanna
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Hi Kim - I too have had increased bone pain with Taxotere/Herceptin/Perjeta/xgeva. When I had radiation to several mets in my vertebrae I was told to expect "Tumor Flare" as the tumors were dying, which I did. My first set of scans after starting T/H/P showed further shrinkage, so I assume the increase in pain was again from the dying tumor. I use Aleve and it usually does the trick. Sometimes if I notice that the pain is increasing, I'll take a Norco at night and that seems to relax the muscles enough to have less pain during the day.
I had not heard about stem cell transplant for Stage IV, but I did find this about an old study that hopefully they will revive: http://med.stanford.edu/news/all-news/2011/07/surv....
I've also heard about Breast Cancer Stem Cells which are resistant to Chemotherapy and radiation, so new drugs are being developed to attack these cells specifically. http://www.mcancer.org/research/stem-cells/breast.
Sorry I can't seem to keep up with all of the posts on this list. I do read them all and wish everyone the best!
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Thanks so much for the replies. I question every ache (I'm sure I am not alone). I will be talking to MO.
I will read those links and pass on any info. I get from my friend.
I sure am glad to have bco and all of you great women to talk to!
Kim:)
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Annie, I was exhausted and had 3rd degree burns after 28 zaps, which is usually what lower stage patients get. But I had the spinal buggers zapped simultaneously. I also had esophagus problems. Try not to sleep until 3 hours after you eat. I also avoided eating a heavy dinner. Sleeping propped up definitely helps. I also drank tea to calm my tummy for the night. It is indeed scary.
regarding second opinions, a doctor in the same practice might have the same philosophy / bag of tricks so I would go further afield. A friend of mine got a second opinion at Sloan Kettering and had her local onc treat her with the protocol prescribed by MSK.
There are many stem cell scams out there. People have lost mucho money to rogue operators. Stem cell therapies have great promise and I think trials are showing success for multiple sclerosis, but haven't heard for bc yet.
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HI all,
Thanks for the kind thoughts regarding my DH. I've been out of the loop for a bit was it was back to the hospital again, so Sunday, Monday, and Tuesday were basically lost days. He's home again and the District Nurse will be back to see him again today. Not horribly thrilled with the overall medical system here, but I do love the District Nurses who come to the house to check up on things. For free. No charge.
I actually feel really good except for being chronically tired. With summer more or less here, the arthritis pain is much decreased and other than the fatigue, I'm doing great.
I will try to catch up on posts and contribute again soon.
Sending hugs,
Terre
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Terre,
So sorry to hear that dh was back in the hospital. I hope 2015 finds you all on the mend with smooth sailing ahead.
Caryn
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Thanks, Caryn!
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Best wishes to you and dh Kiwi. Less pains with the arrival of summer? Enjoy that. Now I look forward to summer even more. It's your turn though. I hope it is a very nice one for you.
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KCM, sorry that your DH was back in hospital. Hope that he is on the mend soon & that you get caught up on some much needed sleep! (gotta love those in home Nurses, we get them here too! Loved the 2 that came to the house to change my dressings, they were so wonderful!) cheers, Dee
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Hi everyone. Missingale, i cannot emphasize enough how important it is to get a second or fresh opinion. Deanna strongly suggested that i do it, she really gave me the push i needed, and i got to work pretty much after that. It takes time to find good names, and docs that wanna see you.
Screech, i do believe that small mets, could become large. That's what happened with my daughter, they wanted to be cautious and not rad much, and my believe is that maybe it could have been a little halted. We'll never know.
Trinity Also this business, of just doing an xray, from past experience i don't think it's accurate enough for bone mets. A Pet-CT is in order, Bone scan, def something like that. And of course, it could always be arthritis. But testing is in order.
Dee, so sorry you couldn't rest.
So, the preliminary on my daughter's bone biopsy report came back, confirming the mets are from the mammary, They don't have the results on the neu yet, that's gonna take a few wks still. But we are forging ahead, and checking to see if there any clinical trials that she could be a club member. Besides that her skeleton and skull, lights up like a Christmas tree, there is a spot behind the eye,that it will be radiated this comg wk. Hope they are super careful w that one! i spoke direct to my daughter's onc, of what the next step should be, and she fully agreed and even offered to spk to the new docs. This was quite a relief. After trying for awhile, of course someone new could come in with a fresh view.
Let's hope and wish, that this coming year should bring good times.
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Hi Deanna! I'm looking at the nuclear medicine bone scan, not CT, although I did have both. I wait for the DVD each time, so I can compare, and I've had 4 or 5 of these this year, so I'm getting better at comparison. But, you're right, I'm no Doc and I don't profess to be. ;-) I do see my Doc on the 5th, so I'll have the official report then.
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Momallthetime - love the "let's hope and wish, that this coming year should bring good times ". I am hoping and wishing that for all of of us for 2015.
Can't remember what is going on with everyone and too lazy to take notes this evening. I hope that everyone is enjoying a pain free,evening. Stsrt warm. The wind chill is like 23 here now. Brr.
I am still having a lot of back pain. Boo indeed.
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HI all,
Tonight is New Year's Eve in NZ..so wishing everyone a happy New Year and a progression and pain-free NED 2015.
Sky - glad to hear some of the mets shrunk. Hoping the lights in the bones are healing spots not new mets.
Patty - hope your back pain gets resolved soon.
Momallthetime - I did light up light a Christmas tree two years ago, but now I have no active bone mets (at least that was true in Sept this year). So here's hoping your daughter's bone mets become the same as mine. And that they are able to zap the one behind her eye into oblivion with great results.
Thanks Dune and Dee!
Missinggale - definitely get a second opinion. I've posted this previously, but my first MO had written me off before we began. The second one disagreed at - see post to Momallthetime above. I haven't yet honoured my commitment to my second MO..I have to send the first one a card at Christmas every year and say "I'm still here!"
Even if the second opinion gives the same info, at least it will bring some peace of mind. This isn't a breast cancer thing, but going through the drama with the DH over the past week has really brought home how important a second opinion is. I'll make this as brief as possible. In April, DH's feet started to swell and haven't gone done since. This has been an off-and-on issue for 30 years and was written off as basically allergies causing it as it would go away after a few days. In July, his new GP (with no tests) decides it's congestive heart failure and puts him on diuretics. Feet continue to swell; the man hasn't worn shoes since June; spent the winter in sandals. In Sept, he develops a sore on his leg. GP says it's congestive heart failure, gives him some salve and says "I'm not going to panic yet". In Dec, DH develops sores on his legs and his feet break out in blisters and he has cellulitus. Off to quick care and straight to ER. ER doc says "based on blood tests, it's not heart problems." Call from the registrar the day he's released (Christmas day) and she says, "He has congestive heart failure." Back to quick care and the new doc there says "I don't think it's heart failure." Back to ER. ER doc says "It's likely congestive heart failure." Back in the hospital two days after release due to infection advancing: "could be heart failure, but without tests we don't know, but no rush to do tests."
At this point, I become the Ugly American and ask why the hell not. It's not going to diagnose or cure itself. The doctor looks at me a bit surprised and says, "you know, you have a good point." So now DH is scheduled for an echocardiogram. Discharging doc says "I don't think it's his heart, but the echo will tell us." Back to the GP. GP says "well, it's likely right-side heart failure" since his blood work and EKG are perfect and show no sign of heart problems. District Nurse comes today and says, "I think you have lymphadema and not heart failure". So she's getting him an appointment with a lymphadema clinic. So about half the docs think it's his heart and half don't. Just points out how important it is to get a second opinion and to keep pushing until you get the tests you need and answers to your questions.
Sorry for the long post. DH is home and doing well.
Hugs to all,
Terre
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What a nightmare, KCM! My DH had two pulmonary embolisms last year from deep vein thrombosis. I wonder if your husband could have a DVT, too?. Sometimes cellulitis is really a DVT and vice versa. DH had a blood test to diagnose the PE and then CT scans and ultrasounds to find the DVT and extent of PE damage. If the echo says it's not the heart for your DH, maybe see a lung specialist? Maybe it's a long shot, but I hope you find answers soon.
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Hi all,KWC - Wishing you and dh get all this sorted out! He is lucky to have you "Ugly American" lol...
I'd like to wish you all wonderful ladies a very Happy New Year! I thank you all for all your support, kind words and knowledge. You have been a my lifeline since my dx 1 year ago. I'm so fortunate to have found you all.
Hugs to all - Linda
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Terre, when I read your hubby's hx, blood sugar issues/diabetes crossed my mind. Has that been ruled out?
I could give you all so many examples of mediocre docs and bad doctoring. One of the worst (again not bc, but Heidihill's story made me think of it) ... a neighbor & dear friend whose local cardiologist was taking a wait & see approach to a known pulmonary embolism he said wasn't large enough yet to be more of a concern. At my urging, his wife located a top pulmonary embolism expert at Cedars Sinai (a top LA hospital), who scheduled him for surgery within the week. When they got in there, the artery was already unraveling. Not that this is anything like your DH's situation, but most people assume a board certified cardiologist knows what he's doing, but that may not be the case if he doesn't have enough experience with a particular situation.
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Thanks all. Deep vein thrombosis is a possibility -thanks Heidi! He doesn't have diabetes; that's been ruled out. He had a lung episode (he also has asthma) a few months ago and they recommended a lung work up, but it's not happened yet.
Happy New Year to all and thanks again!
Hugs to all,
Terre
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Dose #2 Yesterday....Tumor markers up from 57 to 90.6...OC said because of my chemo dose so low...and now starting Faxlodex will see a respond like that...but considering I start in April 2014 with over 300 tm that's not something I'm going to worry about right now...I started new treatment...now will see where this goes...
HAPPY NEW YEAR....everyone!!!
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Good luck and Happy New Year, Freebird!
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Hello everyone,
Terre hope dh is feeling better and glad he is back home. I pray they get a proper diagnosis and treat him accordingly. It must be frustrating for both of you.
Freebird53, wishing you the best of luck with your new treatment! Praying faslodex does wonders for you!
Skylotus, hoping for good results for you on the 5th. I have a repeat bone scan that day. Having scanxiety, tried to talk my mo into cancelling it as I have a post - radiation scan in February to see how the mets responded to rads but he won't have it, said it would be good for us to have a new baseline. Not feeling to warm and fuzzy towards him after he almost had them give me chemo instead of pamidronate 😠.
Heidihill, thank you for all the tips, very helpful and the night that happened to me I had been snacking right before bed, probably not a good idea. Rad onc called me today and said it shouldn't have affected my esophagus that way, that it would have received such a low dose of radiation but he took me seriously and ordered me more pantiloc.
It's 10 o'clock new years eve and I'm ready for bed. Went to see Trans-Siberian Orchestra last night and what a concert! Needless to say it was a very late night and I don't have the stamina for late nights anymore. So thinking I won't last til midnight.
Wanting to wish all of you a Happy New Year and a year of successful treatments for all of us. Praying for each and every one of us to be NED. So grateful to have found all of you.
Hugs to all, Annie
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Annie, I MUST see Trans-Siberian Orchestra. A friend of mine saw it and loved it, and her pictures made me want to go.
Freebird, I'm glad you are keeping your eyes on the prize.
Patty, boo indeed on that back pain.
I must say my pain has been well-behaved. I was terrified last night when I thought sure I was going to vomit. I nearly called my mother. LOL. I'm so afraid of what might happen to my ribs if I vomit or have bad coughing attacks. Anyway, that part calmed down a bit. Then the other end started. So, I am a bit behind with the posts. I'm just now feeling up to being on the computer. So, I've been pretty sick. This afternoon I took some immodium. I guess that helped. So when I get to feeling a little better, I dare to take a pain pill (and my mother picked up my oxycontin today so I'm set) and I nearly picked up the bottle of senna (laxative) out of habit. I thought that was pretty funny and had a good laugh at it.
Happy 2015 everybody. I'm hoping for improved health. I need to narrow that down into specific steps I can take toward that goal, but I think my stomach is telling me to put down the computer.
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Thanks Annie. Sending hugs to you and Sky for your Jan 5 appointments. Hate scanxiety. Hope the appointments go well.
Trans-Siberian orchestra is amazing; saw them several years ago. Just wonderful!
I made it until 11:30 last night (New Year's eve here) and then gave up. Did have a glass of leftover (from Christmas but still bubbly) champagne about 9:30 just in case I didn't make it to midnight. Of course, that may be part of what caused me to crater at 11:30! We didn't go anywhere - the weather was absolute rubbish with gale force winds and rain. Stunningly beautiful day today, however. Got my prescription filled and two new shirts at 60% off at the mall.
Take care and happy new year to all. May 2015 be a good year for all of us.
Terre
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Just wanted to pop in & wish everyone a Happy New Year! I hope for all of us that 2015 is a good year. It's only 10:35 here on the west coast, I'm not going to make it til midnight. Cheers!! Dee
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Hey, Dune, did you realize that right after you said "then the other end started" you said, "I am a bit behind with the posts". Believe me, I laughed more than the thought of you taking senna in that condition!
Happy New Year, all. May our bones make it through the year with no more damage.
Leah
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happy new year all.
Here's hoping 2015 is a better year for all of us.
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