Bone Mets Thread
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Annie, I noticed that hot feeling at my last scan. The first time I only had the peeing pants feeling, but this last time I felt it going up my arm and down through the body and it was hot. It scared me. I think they used a machine to push it in a lot faster which makes me nervous.0
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Hi all, My upper back is feeling a bit better tonight, at least the stinging is gone, I still have quite a bit of pain . There is a red mark there which DH has been putting the cream they gave me. Apparently Dune, the quick reaction isn't unusual at all. When I had 6 weeks of rads I didn't have any issues until week 4. But I did end up being so badly burnt that I think my skin reacts very quickly. I noticed that I am very tired today as well. I had a lot of tummy upset but luckily no "D". I'm off to get some beauty sleep. Hope everyone has a good day tomorrow.
Cheers, Dee
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Hi everyone, I've been running around all week getting ready for my trip, but keeping up with reading this thread, so sending love to all and hugs to those who need them, and congrats to those celebrating good news.
Little one & I fly tomorrow & I'll be back in action in September. We will have wifi but I'm making a decision to unplug as much as possible while we're on holiday & keep my camera in my hand rather than my phone :-)
ps its Womens Day in South Africa on Sunday, so raise a glass to all of you incredible women!
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Amy, Deanna, HLB thanks for your comforting words. Deanna as you said the contrast hit me harder this time, kind of scared me. HLB, the way you decribed the hot sensation is exactly what happened to me, I couldn't believe how hot I felt!
I'm still feeling sluggish and odd this morning, my nurse will be here soon so I shall see what she says. The anxiety as Amy mentioned I think plays a part in how we feel, this waiting is torture.
Hydranne, it's nice you checked in and glad you're feeling a bit better physically but I totally understand the feeling scared part, it's my reality now too but I'm working with someone who's helping me to chase those fears away. I hope the physiotherapy helps you.
Jobur, thanks for wishing me well and it's so good to see you posting here. Today I'm the one who can't keep up with this thread and have to keep flipping back a page, afraid I will lose my post, so what Jobur said, to anyone I miss it's certainly not my intention.
Xavo, best of luck at Dana Farber! Hope they can help you sort this all out.
Cathy, please tell me you have gotten some relief from the other injections they sent you.
Romansma, that is quite a pain med combo you are on and I would have a hard time keeping it straight. I took a dilaudid a few weeks ago and I could barely function with it, although I've had it several times through an IV at the hospital and didn't feel that loopy so I'm confused. Maybe it's because I was confined to a bed and didn't notice 😃.
Deanna, I noticed you mentioned Shaklee's herb-lax. I am on a complete Shaklee regimen and have been since 2012. The detox info I sent you was from my nutritionist who is a Shaklee rep. She had leukemia 35 years ago and was given 6 months to live, through diet and her regimen of vitamins she was able to keep putting off chemo until they found her leukemia was gone. It's an amazing story really and I'm glad to have met her.
This is getting long and if I flip back I'm afraid I'll lose it. I'll be back!
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My bone mets were pointed out to me in April and was told they were healing. First time I had heard of them. Told to keep on tamox. Very matter of fact. No concerns at all.
They have now scheduled me for a nuclear scan for my every three month check up and to see mo immediately after. I wasn't expecting any of this. Is this std to get scanned again so quickly if the two spots were healing?
Usually only get a ct for my lungs every three or four months. Only had bone in the beginning and my two year anniversary. I'm trying not to read anymore into it but I wasn't expecting it.
Thanks for any insight. Have to wait three weeks for scans.
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Cristina, wow that was a lot of shots in the butt, you must be sore! I totally understand what you meant when you said dh complained of being tired. I don't mean to be insensitive to people but yes cancer tired sucks. Or when a friend keeps telling me how sore she is from working in her gardens all day and I'm thinking I wish I could work in mine and I'd take that pain to this cancer pain anyday! Sorry for venting.
Linda, how ridiculous that they postponed your infusion for one tenth of a point! Seriously that was not right. I hope you're feeling ok from it and not having any side effects.
Dee, sorry the rads are affecting your skin, I had very minimal problems but the fatigue and nausea weren't pleasant. Praying these rads work as well as they did on your arm.
Myra, this waiting for the baby to come has got to have you a little anxious, hoping something happens soon. I really want to be a grandma, I should be careful saying that. My girls are 21 and 23 and still living at home which I am happy about.
Karz, have a great vacation and enjoy your time away! Please take lots of pictures and relish every moment with your daughter, you'll have so much fun.
Hey to Dune, Terre, Lindalou, Lynnwood, Susan, Auroya and everyone else here. My nurse is at the door, gotta run.
Hugs to all, Annie
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Hi Ladies.. finally got some relief. YAY!!!! Went 9 days so you can imagine how I felt. There seems to be a huge shortage of Relistor every where here. On Wednesdy I called my oncology nurse and she talked to my MO and they had 2 Relistor in the pharmacy. They sent them to me Fed Ex which is suppose to be next day delivery. They didn't show up period. However I had been upping my prescription laxatives and my son went to the drug store and picked me up a Fleet enema. Last time I tried it didn't work but this time with all the laxatives in me it did. WHEW what a relief. I know kind of shitty subject huh? Never been so happy to have a bowel movement. Off for another chemo today. Hopefully they can track those Relistor's, it's not like they are ready available in any pharmacy. My pharmacist even called the manufacturer trying to get some but it is unavailable.
Hope you all have good days and little pain, and thanks to everyone for the support.
Cathy
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Zills, when I first found out about mets, the onc showed me the scan picture and the areas on the spine. Later when I read the report there was also a met on the manubrium. I was disappointed because for some reason I was focusing on having "only 3" mets. I asked him why he didn't mention it and he said "bone disease is bone disease" lol. I asked exactly how many spots I had and he said "I don't know, count them". A bit rude bit whatever. I guess he is right but at the time I was looking into places that treat your mets if you had less than 5 so it did matter to me. Anyway, I wouldn't worry too much about it.0
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Good morning ladies!
Aurora - Somehow I missed your update. So sorry. Sending you hugs, love and good vibes.
Kartz - Enjoy your trip with little one! Put the switch to off, just concentrate on having fun!
Cathy - At last! Oh, that must feel good. Hope you get that Relistor quickly.
Zills - my Onc will not go past 4 months for CT or bone scan. 3 months is standard especially when recently being diagnosed. It seems to me that your Onc is on top of things.
Dee - I hope you have adequate pain meds until the rads effect kick in. Annie - try to keep busy until results (easier said than done but it helps).
Myra - I guess no news yet. The anticipation must be getting high!
Whenever I get scanned with the injection, I get that hot feeling in seconds and they tell me it's normal. But, the only effect I have is very smelly gas, every time. Anybody else? Zona vaccine for me seems to be a walk in the park - I'm so glad I got that done.
I don't think it's normal that Patty is not checking in - that's not like her. When she takes a break, she tells us. Perhaps, it's time we use the contact list. I can do it, but if any of you are closer to her and feel more comfortable, let me know.
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And, my detective work shows that Patty has not been on BCO since July 30th.
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re CT contrast side effects, when I have CT scans I don't have any contrast. I had a really bad allergic reaction to X-ray contrast about 30 years ago and have never been brave enough to try it again. Doesn't seem to affect their ability to read scans. I do have the nuclear stuff with petwhich is fine.
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Zills, you seem to not like having more scans. I am wondering if I have had less than one usually gets (5 months between). Probably we both need not be worried. It seems to be at the pleasure of our oncs. Not necessary reflects our conditions.
HLB, your onc's response is interesting and I kind of like it. For I am worried that so far my CT and bone scans reports (so far two sets) are all vague of the numbers and sizes of my bone mets. I thought the radiologists should not be so lazy. If, as your onc indicates, three or five make little difference for bone mets (mine are a lot more than that in fact），I start to think maybe I also could relax a little with the laziness of the radiologists down here.
Everyone enjoy the beautiful summer weekend! (Sunny and cool here in MA!)
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Zills, it seems like some oncs automatically scan every 3 months. Personally, I'm not onboard with that much scanning, and was glad to hear my UCLA onc say she likes to scan at least once a year -- assuming, of course, TMs and pain level are both stable. My sister has been in radiation oncology research for many years, and she agrees that there's no point to scanning if we don't have new or worsening symptoms. I also feel like it's our bodies and we should have input into this if we're not comfortable with what's being recommended. Just moving to every 4 mos., for example, can't make that much of a difference and would mean one less scan per year.
Oh, and Annie... one thing I forgot to say about that crappy feeling we get after our scans... I was telling the nuclear tech how bad I feel after my CTs, and she said she had worked in CT previously (she was doing the pre stuff for my bone scan), and that it's the drink that makes people sick afterwards. She said to report it to the CT tech and see if they could offer me something different, which they didn't; but they did tell me to only drink 3 cups this time, rather than two full bottles. I still felt awful, but it might be something you could ask about next time.
Bosco, a bad reaction to contrast must have been scary! I wonder if whatever they give you has changed much in 30 years, or if whatever you were allergic to is still the main component? I know one of those contrasts is related to shellfish. Are you allergic to those?
Cathy, yay for relief!!!
I have a wicked headache today. Not sure if it's from Faslodex or the extra pain meds I took yesterday. I also had a note from my UCLA onc's PA telling me that my scans did not show any fractures, just multiple thoracic and lumbar bone mets. She made no mention of progression or increased activity, so I guess I'll have to wait until my onc returns next week to get more info',
Happy Friday everyone!
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Thanks - it was scary particularly as I had had it before ( all for childhood kidney issues). They thought it was iodine related. It would probably be OK now but I'd rather not take the risk and the rad/Onc seem to manage without it. I'm not allergic to anything else except insect bites and cat scratches when I come up in lumps.
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I just had a CT scan of the chest, pelvis and abdomen 3 weeks ago. When my onc told me she was ordering the scan, I made a face and mentioned the bad taste of the contrast. She said she could see things just fine without the oral contrast, IV contrast was good enough. She just wrote no oral contrast necessary on the script. The tech didn't seem to care one way oranother about it.
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Annie, my DH & I have used Shaklee nutritional products for 30+ years. Back in the 80's, they were far superior to anything you could buy elsewhere. They're still top notch and we still use quite a few of them, but there are more quality brands to choose from now, so we also use things by Pure, Thorne, Life Extension, Doctor's Choice, Jarrow, and others -- although there are a few things, like Herb Lax, that I've never found a better or even an equal version of elsewhere. And yes, I recognized the Shaklee products on your great detox instructions list.
Lynwood, I'm really surprised that your onc waived using the gaggy contrast drink. I'll have to ask my onc about that. Maybe I'll ask my sister too and see what she can tell us. It would be wonderful not to feel so sick and out of it after a scan.
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I've been to two different scanning centers. One uses room temp contrast the other chills it. The chilled contrast is far more palpable than the room temperature
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Just to let you all know that I left a voice message to Patty early this afternoon. Have not heard back yet. Will let you know when/if I hear something.
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Thanks, Linda. Maybe they're on vacation.
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I cannot stand the taste of the contrast either. I get my iodine straight up in a glass of water. Tastes kinda stale but so much better than those drinks. I think a lemon slice would do wonders and they said I could bring one next time. It's no wonder people hurl in those machines.
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Cathy, thank God you finally got some relief! 9 days is a very long time, hope you can get the Relistor and hoping chemo went well today.
Bosco, sorry to hear of your bad reaction to the contrast. I worry about that every time as apparently it doesn't matter how many times you've had it.
Deanna, interesting that it's the drink that makes you feel sick, I am still not right today and I have a bad headache right now too. I hope you've gotten rid of yours. Good news on no fractures, praying for continued good news. And yes Shaklee is a very good company and I use a wide range of their products. I don't meet too many people who have heard of it.
Linda, thanks for checking on Patty, I've been worried for awhile and kept hoping she would check in.
Amy, I'd have to agree, I get the room temperature contrast and it is horrible!
Feeling very tired, signing out for the night. Hugs, Annie
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Feel better ladies with headaches.
I hope we hear from Patty soon.
Deanna sounds like we have similar bone mets. I have multiple lesions throughout my cervical, lumbar and thoracic spine. Felt ok today but then again I take a boatload of narcotics...
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Babs. Would you mind telling me, or you can PM me, name of your MO?
Thanks so much.
Stefanie
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Just to say Hi to everyone. Happy Saturday!
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The center where I have my scans allows people to pick up the contrast the day before the scheduled scan. I did that , and it was icy cold. I was told that it would taste better if I kept it chilled, which I did. I was also told that I could add a bit of flavor to it, like Mio, but I chose not to do that. These steps will only make the drinks alittle easier to take, of course. It will not help the after effects that some people experience. I hope everyone has a great weekend.
Lynne
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Hi wise woman, I was dx with bone mets 2 months ago. I just finished rads and am on zometa and faslodex. I have been having breathing issues that I think may be an se. If I inhale deeply I start to cough. I also haveA hairline fracture in the pelvis which is making it painfully hard to walk. Dr. Said it could take 10-12 wks to heal. Anyone else dealing with or dealt with a fracture?
thanks,
Rachel
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HI guys,
I texted Patty. She is very tired but she was on a vacation with her family and it was a no internet vacation. She said she would check in when she can. She said something about having to see her onc about her scans. So we'll see.
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Hi, Rachel ~ I'm so sorry about your mets dx, but glad you've found us. I learned I had pathological fractures (from bone mets) in my femur and pelvis about 3 mos. after my initial dx, after hobbling around on a cane in pain that was getting progressively worse until I finally ended up in the ER. The good news was, the pain improved greatly after they put a rod in my femur and also did a hip replacement since the fracture was high enough to need that fix too. I don't think they did anything special for the pelvis fracture, but the pain I was having -- and I remember how awful it was when it shot thru my pelvis -- eventually went away after I recovered from surgery. My best advice would be to stay off it, or use a cane if you have to get around, so that you're not putting any weight on it and allowing it to heal.
The breathing issues might be from rads, in which case I think would think things would improve over time, as any inflammation from rads goes away. But I haven't been on zometa and I just started Faslodex, so can't comment on the possibility of it being related to one of those.
Cristina ~ I'm glad to know Patty's okay. Thanks for reaching out to her and letting us know!
I like your pie choices, Hydranne! Both sound perfect for summer!
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Hi Rachel, I was diagnosed with pelvic mets. No fractures but it was super painful, it would wake me up in the middle of the night and it got to the point I couldn't put weight on it. I had a terrible limp. I have had 3 zometa infusions. It doesnt hurt at all any more, I can put weight on it now and my limp is almost gone. I hope u feel better soon.
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Hello! I was diagnosed with stage 4 metastatic breast cancer in June of this year (only 1.5 years after my primary stage 2 IDC and DCIS). In 2013 after my primary diagnosis i found out I was positive for BRCA1. I chose to have a double mastectomy, full hysterectomy, as i have a young child and didn't want to take chances. After the hysterectomy I took Arimidex daily. I am still in shock about my new stage 4 diagnosis. The pathology came back exactly the same as my primary-estrogen and progesteron positive. How ? we took all the estrogen out/away and i i was taking a drug that was suppose to suppress any that was made from other glands etc.
anyone else with this scenario?
bone mets in sternum and 9th rib and possible liver involvement (they aren't sure and are watching the liver...WHAT!!???)
-Amy
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