Bone Mets Thread
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Thanks ladies for well wishes with progression. Probably will not find out till next year what my next treatment will be as my onc is on vacation.
Terri
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Pattyppermint so happy you could make it home to be with the children. Precious. Good for you. And thank you so much for your kind words of support.
Kirstensmum you know it could be nothing, but from past experience with my daughter, i always felt that a Pet-Ct or something like that type of imaging, would clarify doubts. A Bone Scan in Sept., does not mean that somtg can't come up in Dec. Sorry, but it's the way this beast works. So, if you could get some peace of mind b4 your next appointment, and with a legitimate pain.... Well, good luck to you.
I'm kind of sad now, bcs i spoke to the onc tont, and she said "oh, it's not good, not good..." she is also hopig maybe something will show in the biopsy, but she kinda doesn't know where to go with it anymore. She is even recommendg THE big center, not for right now the conversation, bcs she is waitg for the results,BUT it's on her mind. I gotta hold the fort here at home till after the weekend, i'm not ready to tell her sibs, 3 in their 20's very close to her, what i heard today. It's messes up, ladies.
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Patty, so glad to hear you are home from the hospital and hope you can rest during this crazy time of year. Maybe wrap in bed? wrap and nap!
Terre - enjoy your break! It sounds like you really need it, I hope you can do some fun things and be good to yourself.
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Thanks Readingmama! It should be good. I plan to catch up on the mysteries I've recorded as well as sleep, doing some gardening, and hopefully some photography.
Momallthetime - hoping for better news from the test results. Going to the "big" cancer centre may not be all bad - there are amazing things happening with this disease every day and a big centre is the best place to be able to take advantage of them. Sending positive thoughts your way...sounds like a heck of a nasty shock for you and you have my empathy.
Hugs to all,
Terre
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I've been newly diagnosed with bone mets and have a question for those of you with them. Are your mets scattered or grouped together? I have one in the cervical spine, 1 in the thoracic spine, 1 left rib3, 1 right rib 10.all are lytic and they say possibly early stage mets.
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good morning ladies. Thanks for the support all. I am feeling better today than yesterday. Better everyday. We finished decorating the tree and inside the house tonight and I even felt like riding around to look at Christmas lights for about an hour afterwards. Ds's were very happy which mskes me very happy. Course I was nodding off on the way home. Not sure what it is about women ( including / esp me) who feel a little better and think they have to get their wonder woman suit on. So much to do.
Linda - thanks. Pain free from radiation, sweet !
Annie - good advice thanks
Reading mama - wrap and nap, love it ! Sounds like it should be in a Christmas song.
Momallthetime - holding your family in prayer. What a hard conversation for you to have to have with dd sibs. Sorry. Maybe the big center would have a different opinion.
Romansma - week off X? Really? That's perfect timing ! I hope you have a festive week indeed !
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gg / thinking of you. Hope you and your dh were celebrating your wonderful good results with your delicious meal.
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Take it slow, Patty. Just enjoy and let everything else fallen. They remember your presence, not necessarily your presents!
Yup, week off. Still nauseated, but hopefully gone soon. Banderso - my bone mets are scattered nicely. Hips, pelvis, lumbar, thoratic, cervical, skull, iliac, and ribs? I'm sure I forgot something, but you get the point. Do you have a treatment plan yet? Don't hesitate to lean on us with any questions and worries you have.
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Welcome, bandesero, although I'm so sorry you have reason to be here. I have diffuse scattered mets throughout my pelvis and vertebral areas, including ribs. I know it's a huge shock whether it's one site or multiple locations, but early stage sounds like a very good prognosticator. What tx do they have you on or will you be starting?
Patty, great news that you're home and had the energy to do the drive around with your boys! That was always one of the highlights of Christmas week for us. Hope you can find the right balance between what you absolutely need to or want to do and the health-restoring rest your body needs right now. Continued prayers for you!
Momallthetime, if I was in your situation I would already be on the phone with one of those big cancer centers. The comment your daughter's onc made sounds totally inappropriate. Sorry, but I'm not a fan of any onc who thinks like that, no less verbalizes it to a patient or her Mother. But on the positive side, if it's what makes you go somewhere else, then that could turn out be the best thing your daughter can do. If you need it, here's a list of those "bigger" (NCI-designated) cancer centers. http://cancercenters.cancer.gov/cancer_centers/map... These centers will have the most experience with difficult cases, as well as be on the leading edge of new research, since they're the ones doing the research.
Romansma, it's great that your week off coincides with Christmas! Hope your nausea goes away quickly.
Annie, I so hope you're feeling better today!
Dee, I'm anxious to know what you've found out.
I heard back from my UCLA onc last night. No need for another scan right now. We can wait based on my stable TMs.
Hugs & prayers going out to everyone, especially those not specifically mentioned. And by the way, Chrissy, where are you??? Did I miss something about a holiday? Hope all is well and that you're maybe just busy again with your daughter's training and competing. Deanna
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Good news DLB
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dlb / stable tms. - Sweet. !!
Hope / right on ... I hear ya. Thank for reminding me.
I went to mos today for xgeva shot and lab for follow up from hospital. Mo warms to make sure antibiotic is goings its job. All my labs have improved..but still under guidelines for shot usually. Also my bp was 85 / 62. Very unusual for me. I am consistently 120 / 70. Nurse said was normal fir body healing.
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Good news, Deanna!
Welcome bandesero. I have mets in my spine, rib, hips, femur. My last scan said they're all inactive, which is great. It's a shock to get a Stage IV diagnosis, and I'm sorry you're going through this but glad you found us.
Momallthetime - if it helps at all, the first oncologist I was with had basically written me off. Was giving me "pallative care" with no scans, etc. He told me not to buy a new car (with a 3 year loan) because I wouldn't likely be around to pay it off. I got a second opinion and it's as different as night and day. My new oncologist said that with my diagnosis, he thinks there's no reason I won't last a long time - he has patients with the same diagnosis who have been stable for more than 10 years...his goal is to keep me stable until there's basically a cure and the disease is considered manageable similar to diabetes. And I feel fine for the most part. Just having someone believe in me and fighting for me makes a huge amount of difference. So...with regard to your daughter's oncologist - fire her now and find one who is more competent, more optimistic, and more willing to fight side by side with her.
Ok....climbing back down off my soapbox.
Hugs to all,
Terre
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i started chemo today, the port gave them a hard time so after two attempts they drew blood from my right arm and started treatment in my left arm. They put something in the port to break up, what they were hoping was a clot, and it was. Thank god as I've had a lot of neck shoulder, collar bone pain from the procedure of putting the port in and didn't want to start over. Am getting herceptin, perjeta, and taxotere as well as zomayta.
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Hi Branderso, I guess no 2nd opinion? Most places will do a bone biopsy to 100% certain but they probably know what they are looking at on your scan. Best wishes for success with your treatment.
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i called the Mayo and they will be calling me back after someone reviews my info.....they said to start the treatment
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That's a good thing.
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Hello ladies. Perhaps some of you have seen this before, but I thought it was very informative and might be helpful for some of our newer members. It is a transcript of a presentation given in April 2014 at the Metastatic Breast Cancer Conference in Philadelphia on understanding bone metastasis.
http://www.lbbc.org/content/download/9503/74361/tf...
You can download the podcast as well.
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shutterbug thank you for posting that, it is quite informative
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This is really informative.
Was just diagnosed with bone mets to thoracic spine, hips, and femur as well as numerous lymph nodes. Started on Zometa today. Per the article, my oncologist wants to make chemo the first stop to knock out as many cancer cells as possible, since I failed on Arimidex after 4 years.
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shutterbug,
Thank you for the link. 3 1/2 years on Femara, two years of Aredia, rads to my single bone met and I'm holding steady. Very encouraging.
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Hi Everyone. I'm sorry if I worried anyone. I kept falling asleep before I could read much. I'm still one page behind here (and many pages behind on other threads), but I wanted to let you know I am fine. I started taking my nighttime dose of oxycontin and the sleeping pill right after dinner. I'm not in bed long before I'm struggling to keep my eyes open. I have another appointment scheduled with the new oncologist. She needs to order the Xgeva shots. I also have to find out if she is going to allow me to use ultrasound instead of mammogram as a screening tool. I can't believe I forgot to ask her that when I saw her the other week. This would be a deal breaker, so I have not cancelled anything with my "former" oncologist. Anyway, this appointment is the day after Christmas. That's OK. The appointment is in the morning, and mom and I will go shopping afterwards. Is everyone ready for Christmas?
Terre, it is sad that the pheasant didn't make it, but you made him/her comfortable. Birds are quite fragile and difficult to treat when they get sick or injured. My cockatiel tore apart a box in my room today. I had forgotten that I left the cage door open. I'm glad he didn't get into anything else but am worried about what might be in the paint and glue and all that might have been used to make the box. He ate the paper flowers off of it. I gave him a little chlorella to help clear out toxins. He seems ok now.
I am so sorry about that ONJ. Does it still hurt, and are you going to try the Listerine to help kill the bacteria that is involved with it? Oh man! And this is a thing that can be caused by bone-strengthening drugs?Dee, I look forward to reading the results of your bone scan and how your tumor markers were. I hope you are celebrating at that beautiful hotel. I think it was a very good plan to make it a bit of a holiday. Why not?
Peg, the new oncologist prescribed lidocaine patches, and they really seem to work. I have also been able to resolve the medication problem. Target filled it. They didn't have them in stock but told me to bring in my script and they would order the pills. Two days later they texted me that it was ready for pickup. I talked to the head pharmacist at Rite Aid, and he basically said the same thing. He apologized for the experience I had, assured me he would make sure his staff knew not to treat people the way they did, and told me he would get my prescription filled. He told me to tell the staff to call him (he gave me his name) and he would order the medication and I would have it in 2 days.
Oh my gosh, Patty! How did your blood get septic? Thank God you are still with us!Romansma, this tiredness is certainly aggravating.
Is Hindsfeet recovering well?
Linda, I had to laugh at your comment about rads being invented for you. Anyway, I'm glad they are helping you.
Annie, I'm positive MS complicates things for you. Plus you have the mets to L5. I know how my ribs hurt me. That is quite bad enough. Do they have any plans for treating that area?0 -
Shutterbug73, thanks for the link, very informative and I enjoyed reading it!
Dunesleeper, welcome back! Omg I was seriously getting worried but glad to hear from you and to know you're ok. I know the fatigue can be brutal. In answer to your question I just finished up two weeks of rads to all 4 areas where my mets are, so yes L5 was treated as well. I think I'm experiencing some tumor flare pain because even though it hurt beforehand it's much more painful now. They did worn me this might happen. Glad to hear you were finally able to get your pain meds.
Nred2002, best of luck with your treatment! Hope it kicks those cancer cells to the curb!
Dee, hoping you received good news and are celebrating with your dh.
Well I am pretty much ready for Christmas, not stressing this year. Cut back on alot of my decorating but it still looks festive. God bless my daughters who did all of my wrapping and a good part of my shopping for me, didn't have too much to get anyway. I don't even have to worry about the meals this year, my dd who is a chef has it all covered. Rest is what I'm looking forward to, the rads really made me tired and increased my pain. This too shall pass.
Wishing everyone a nice restful weekend, hugs to all, Annie
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Welcome nred - sorry you're here but glad you've found us and are starting treatment.
Welcome back Dune! Glad you got your pain meds sorted.
Apparently I will be at risk for ONJ for the rest of my life, despite stopping the bone-strengthening meds. So I just have to keep my mouth clean - brush after every meal and use mouthwash. I have one I get from the hospital. Tastes absolutely vile. But it's an antiseptic mouthwash. Makes Listerene taste good. My mouth did eventually heal with the gum growing back over the bone. Took 3 rounds of antibiotics and about 7 weeks, but it's been good for over a year now.
My tree is still in its box in the living room. The box of ornaments and lights is there too. Someone suggested I put the ornament box on the tree box and tell people that the ornaments are on the tree. Not a bad idea! Just not feeling the Christmas thing this year for whatever reason. Not feeling bad about it, just not feeling it. And I'm usually a Christmas junkie!
I did get my annual Christmas singing animal however: Makes me laugh even though I've watched the video and the live version like 20 times.
I think a lot of my issue is just being tired. Hoping to catch up on sleep and gardening over the break!
Hugs to all,
Terre
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hey kiwi - ornaments on the tree - how funny
Nred - welcome. Jump on in the conversation
Annie - what sweets dd's you have to help. Rest up. True. This too shall pass
Dune - welcome back ! Glad you got your rx filled and worked out for the future.
Banderso - I have mets from base of skull to tailbone in each and every vertebra, hips, pelvis, ribs. Hope your port works better next time. First chemo today! hope you are feeling well.
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Banderso, mine are quite scattered too.
Terre (KCM), I say draw a picture of a tree all dressed up and hang it up. Santa can put the presents there.
Welcome to the newcomers. My eyes are crossing again, so I'm closing the computer again.
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Saw this on another board..>Might be my speed this year!
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Can someone explain tumor markers to me? Mine were over 1000 to start and now down to 400+. Trying to understand this emotional roller coaster.0 -
Good morning all,
Nred2002 - Sorry you had to join us but welcome. Keep us posted.
Shutterburg - really liked that article - very informative.
Dune - so happy to hear from you and meds resolved. Get plenty of rest.
KWC - enjoy gardening while I'll be shovelling snow...lol
Annie - Hope you get relief from rads soon. The flare up is no fun.
Banderso - I have mets to femur, pubic bone, iliac, sacral and 1 rib.
Donutswife - what tx are you on? Tumor markers going down is a good indication.
Freebird53 - Haven't seen you posting lately. How are you?
Nice day to all - Linda
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Hi All!!
We're not home yet, we decided to stay an extra night at our favourite Inn. Not the same place we were at, but an old house which has been converted to an inn (Spinnakers Brew Pub & Guest House) We've had a nice time, Victoria is absolutely beautiful at any time, but Christmas is even more so.
My TM's are down to 12 from a high of 60 & onco says that my bone scan looks to be showing bone healing. The CT scan was good, she's happy with it. I couldn't really get the details from her, she is so busy, but I am going to go to my family Dr & get the proper explanations. But we took this as good news & had a lovely dinner with a lovely bottle of wine! Unfortunately, it didn't sit too well with my tummy, but it was worth it!
I have several pages to catch up on when I get home, but I hope everyone is well & pain free. Cheers, Dee
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Dee - that's wonderful news! Enjoy every single minute.Linda
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