Bone Mets Thread
Comments
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I haven't figured out how to do that yet Patty. That's pretty goofy of me, since I am/was an IT professional. The problem is I'm so disorganized. By the time I decide I am going to give it a try I have misplaced the paperwork that tells me how to access it. I am truly a mess. LOL My mother, on the other hand, is a super-organized and driven Capricorn. I really must get my stuff together before that Capricorn blows its lid!
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DianneNC - good luck with your cyberknife treatments. Sending good thoughts your way.
Smellimd82 - I don't have experience with PET scan, only CT and bone scan. My bone mets show up on the CT scan as areas which are missing from the bones. On the bone scan, my mets light up and glow. The limitation of the bone scan (or so I understand) is that spots that are healing can also light up and glow, so it's not always definitive. Good luck!
Terre
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Thanks to those of you who replied to my plea for help.............
My friend was told by one of the three ortho surgeons.........inoperable........her hip has fractured and she's in a wheelchair....................
I've had a brilliant response from the UK website............thanks
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Happygran - sorry they can't operate on your friend. How awful for her. Hopefully they'll be able to strengthen her bones enough to do something going forward. I spent about 2 weeks in a wheelchair before they pinned my leg and it's not fun. Glad you got some good news from the UK website!
Hugs to all
Terre
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Hi, just diagnosed with a met on my L5 lumbar spine. I was having hip pain, and weakness in my leg. Now having pain in both hips and lower back. I am awaiting an appt to see radiation oncologist. Does anyone have experience with radiation getting rid of the pain? I hope so, am on morphine for the pain, but don't like the way I feel on it.
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Sugarplum - So sorry to hear about your met to the spine. I also have a met there (one of several) on my spine. My oncologist spoke to me at my last appointment regarding radiation so I am curious to read the responses to your question. I hope you find a solution to the pain very soon. - Karen
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Hi SugarPlum. I'm sorry you have had a progression, but welcome. I have not had experience with radiation at all, but we have a number of ladies here who have had significant pain relief from radiation. They'll jump in with their input. Good luck.
Tomorrow is a pretty big day for me. I have to ask my boss if I can leave so that I can go to my appointment with the new oncologist. Then I will have to make a decision regarding which oncologist to stick with. I also have to ask my boss which TWO days she wants me to work from now on. I need to cut back a day, and I warned her about it nearly a month ago. She will not be happy with me.
Plus I have to call my old bank to set up an appointment to try to get my money. My first disability check went into my old checking account, which they locked me out of because I sold my house as a short sale and they held the mortgage. They said they forgave the debt, but they keep any money that accidentally goes into my accounts there. Another battle to fight. Come on life. Cut me a break!
I am trying to think of all of this as what it really is: living life. Life is full of all sorts of complications. I guess I should be grateful that I am still being challenged to live life.
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Hi sugarplumfairy. So sorry you are joining us, but the ladies here have been very helpful for me, especially when I was first diagnosed.
I had mets to my spine and hip that were causing considerable pain (along with others that were not). I didn't have numbness, but I did have compression fractures in my spine and because of that they decided to do 15 rounds of daily radiation before I started chemo. I was nauseous after the first round, so they gave me Ondanserton to take 2 hours before treatment and I never had a problem after that. One met was in the sternum area and I did have some esophageal issues when swallowing towards the end of treatment. They decided not to do rads to my hip because they felt it could interfere with blood cell production.
I can say that the pain got slightly worse before it got better. They warned me about this and called it tumor flare. I liked to think of it as pissing off the tumor cells.
I took Aleve during the day and hydrocdone at night. I am 2.5 months past rads and I have almost no pain, except for some stiffness when I sit for too long. They say you won't get the full benefit until the hole left by the tumor fills in with scar tissue, which can take a few months.I hope your treatments go well for you. Let us know when you start and how things are going for you.
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Thanks for the replies, mikarae, dunesleeper and shutterbug73. I'm hopeful that radiation will reduce the pain. I don't know if I will need chemo also yet. I have been travelling for work for a few months, and thought the driving was causing some of my hip and leg pain. It has gotten progessively worse, quickly. I won't be working for awhile, which makes Christmas stressful
Sorry you are having work issues, dunesleeper. Cancer sure wreaks havoc on our lives, doesn't it? 0 -
Dune - Bugger @ check in the wrong bank. That sucks!
Sugerplum and mikarae - For what it's worth, I had radiation to my spine. Can't ever remember which one it is, but the vertebrae directly behind my belly button was bad and quite painful. I also had hip/femur mets. They did one treatment for the hip/femur and five for the spine. First treatment - I was sick as a dog. Advice - don't eat something you don't want to barf up later.
Second one - minor nausea. Third - fifth - no real issues with nausea. Tired as tired can be for like a month afterwards. I've heard about the tumour flare; I didn't get it. Got pain relief pretty quickly; within about a week. So, it should help. Sorry you're in such pain! Hope you get relief soon.
Regards,Terre
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SugarPlum and mikarae, I am currently receiving radiation to a few bone mets and the L5 is one of them, so far it has caused me very little pain but I still have a couple treatments to go. I am having a total of 5 treatments to each area. I have to say the one bothering me the most is the sternum. I am experiencing some esophageal issues and pressure. I am also extremely tired and nauseous. I hope this helps and wish you the best!
Well off to treatment number 6 today, and as I was saying the rads to my sternum are causing some unwanted side effects. And that is the one area that didn't bother me pre-radiation so I will have to mention it today. Another odd sensation I'm having is tightness across my implants. I hope the radiation isn't doing any damage to them, they said I'd be fine. Hoping this is temporary.
Wishing everyone a good week! Hugs, Annie
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SugarPum had radiation last year for pain in the hip and lower back. Had trouble walking and even looked at getting a cane. Was taking oxycontin which worked but kept me loopy. Radiologist scheduled 10 doses then I did 5 boosts for a total of 15. Relief was not immediate but did eventually work. Had the usual fatigue side effect, but since the rads were directed towards my pelvis also had other lovely side effects that affected my digestive system ie: diarrhea, slight loss of control of urination (had to use pads for leaks) On the whole the rads helped with that pain and now I can control most of the pain in the other areas with tylenol (can't use asprin or any other pain reliever which can encourage bleeding due to some other health problems I have) Hope you get quick relief with the rads.
Charlotte
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Sugarplum,
I had radiation 3X this year for new bone mets. They radiated L5 which was causing me a lot of lower back pain. It worked like a charm for me. I had 15 total, by the end I had no more lower back pain. Hope your treatment works as well.
Terri
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Girls, just got out of meeting with new onc. She wanted me to take prilosec as a stomach protector when I take ibuprofen. She said zantac would be ok when I asked. What is different about zantac that it doesn't hurt bones? Also this onc is much more speedy than my other one. I think I will have to be very precise with her, with much less touchy feely conversation. Anyone else have an onc like that? How does it work? I will talk to her nurse tomorrow or wed. If she is emotional based, it might balance. Basically I guess I'm saying that this one is much more clinical than the other. The other is more nurturing.
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mscal02. I was diagnosed with BC in November 2013, I wasn't confident in my MO (had previous experience with her 2009 when I had lymphoma). Went for a second opinion around Thanksgiving. Got a PET scan which showed mets to bones. So I started on anastrozole daily and Xgeva every 3 months when I go in for exam. I have some strong joint pain in left leg and hip and just recently in my neck. My main tumor went from 8cm in Dec 2013 to 12 cm in March 2014, July PET scan showed NED, having another one at the end of the month, will find out if the pain is a side effect or not. I can't take pain meds, they make me sick, so heat is my friend, I'm also going to do an acupuncture consult in Dec. and if PET is OK, get back to exercising which I stopped when the pain got bad.
Smellim82 - had bone scan in 2011 to check on unexplained rib fractures. As a lymphoma survivor, had CT Scans every 6 months through 2013. My breast cancer and bone mets were not detected. I had 2 PETs when I was on chemo for lymphoma in 2009, the only thing I'm certain of is the breast cancer wasn't there then. I guess every doctor and insurance companies preferences are different, but I am having my second PET scan at the end of the month. CTs have never really shown progression or remission for me.
Sharon A
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Hi all,
My MO just called me re the urgent referral in ortho. It turns out she is being extra careful because I mentioned to her I was planning a trip and since the pubic bone is badly damaged (with pathological fracture) she wants the ortho's opinion for travelling. I'm also going to the radio-onc tomorrow for additional rads to pubic bone and possibly femur for pain relief. Good new is bone scan is NEP (no evidence of progression), everything is stable. Thank God and thank you ladies for all your kind words of support. I think I'm gonna have a good night's sleep.
Linda
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Great news, Linda! So happy for you!
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Great news Linda! Just got back from Ortho. I got 3 shots from Dr. Shatz (pronounced Shots). Amusing
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LOL on your doc's name
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Cute, young guy too. Looked like he should be on ER or Private Practice or whatever the latest doctor show is
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Thanks Sharon: I don't have much joint pain, when I cough, sneeze or jostle myself I have pain around my whole frame. My scans in July were pretty good. My Onc. thinks the pain may be radiating from my pelvis.I get the Xgeva every month, and am just wondering if I should ask about every other month.since I've been on it for 18 mos,
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LOL @ Shatz. My mother had an OB/GYN (honest) named Dr. Beavers. And my dentist when I first moved to New Zealand was Dr. Payne. He lived up to his name!
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My MO is OK with Xgeva every 3 months. I also take 5000 iu's D3, calcium, fish oil with high EPA, ginger0 -
Thereis a dentist named Dr.Gum not far from me.
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We have a dentist named Dr. Toth near me.
I sign letters that are sent to potential new patients for dentists. One of the ones I got was to be signed "The Smile Team at Arbor Dental Group." I got so sleepy, was probably taking the pain meds. Anyway, eventually it looked like it said "The Senile Team at Arbor Mental Group." I had to concentrate soooooooooooooo hard not to write that!!!! I started downing coffee and sugar to try to stay awake. LOL
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Dune, on that misdirected check... you may have to play the cancer card with your bank -- if you haven't already. I can't believe they would be so callous as to withhold those funds from you given your Stage IV d x. If they do, I might go so far as hinting at what bad PR that would be for them if they do. Afterall, they agreed to the short sale. Deanna
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Oh, thanks for reminding me Deanna. They told me I don't need to come in, that they are sending me a check, and that they are very sorry.
I had quite forgotten because I am concentrating so much on whether or not I can work with this new oncologist.
Anyway, thanks. That was some incredibly good news.
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Glad to hear it! And on the onc... maybe a third opinion? It doesn't sound like you're enthused about #2!
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Annie I hope that your rad onc was able to give you some answers as to why the esophageal sx....and some medication to relieve those sx. My guess is that the tissue involved in the sternal area may be more sensitive to the rads. You are really moving along Annie You will be done before you know it
I'm right there with special prayers thatwill get the job done. Gentle hugs, Peg0 -
Thinking of you Annie. How many more to go? It won't be long (I know, easy for me to say) , and meanwhile you are kicking cancer's butt.
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