Bone Mets Thread
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Good afternoon ladies. Hope all is well.
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This thread is impossible to keep up with, so I will hit just a couple of concerns and send love & hugs to everyone else..
Valerie, I'm so sorry about your pain and return to the hospital. Are you still there? Keep us posted! I know others have reported much increase in pain that takes a long time to resolve after rads. Hopefully, that's what's going on with you and there will be much brighter days ahead as the inflammation heals. Keeping you in my thoughts & prayers!
Karla, it's great that you're getting all your necessary tests done in one day, though no doubt a long one for you. I'm thinking of you and praying you get only good news this time!
ReadingMama, I am so envious that you skied! That's the one thing my UCLA onc said would be foolish for me (with extensive bone mets), but I am still toying with throwing caution to the wind one of these days and going anyway. After living in Aspen, Vail, Steamboat Springs & Park City for many years, we hadn't skied in recent years due to my DH's bad knee -- injured over the years in multiple sporting accidents and exaccerbated by age. So he finally had knee replacement surgery last fall with a fabulous ortho doc, is doing phenomenally well -- absolutely no pain -- cleared for skiing -- and now I'm not suppose to ski. What a stupid twist of fate! But I sure envied you going!!!
Anyway, hugs & love to all! Deanna
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Hi everyone! Got outta hospital Sunday and did fourth rads with first being today post hospital. U fortunately , it's making me so freaking nauseous. Omg! I take Decadron, Mylanta, Klonopin, nexium ..... All to small avail. Any experience...ideas? I know some of you are fighting side effects that make this seem like small ptotatoes but that's why I ask. Oh and I got ginger also but throw up I must and the rest of the day is done. To add something, I know that trial for pac. Is extremely exclusive. Everyone is waiting on its approval!!!! May we check it out! Much love
I
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Ijust wanted to share that there is a new trial for Pablociclib with expanded access. When I tried to find a trial a couple of months ago for this drug, I was excluded because of prior treatments. This expanded access doesn't have those same exclusions. Hopefully we are only a few months from having full access to this drug with FDA approval pending, but sometimes a few months can make er a big difference.
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Valerie....do you have any Ativan? Not instead of anti-nausea, but along with. It has helped me recently and in the past when all I could do was dry heave all night
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All I have is Klonopin. Helps......thank you. You are a very nice gal you know.
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Hello everyone,
Valerie, praying you feel better soon. Radiation can be hard, I finished up 2 weeks of rads December 12th and still having a bit of a hard time. It will get better, hang in there and take what helps you to get through it.
Had my ortho visit today and left feeling extremely frustrated. They x-rayed the humerus again. He said things look the same. I told him about the bone scan saying it looked like progression, which he said could be inflammation or healing. I told him my arm is hurting more now than it did pre-radiation and asked if it should still hurt 6 weeks after rads. He said no it should only hurt the week after radiation ends 😞. Well IT HURTS! Then he said we really can't tell for months sometimes if it's healing, so why am I here today? Well he said if it keeps hurting in the next couple of weeks come back and see me because it could be progressing.
Ugh utter frustration. I put a call in to my rad onc. He'll call me tomorrow. My question is if the bone is healing could that cause pain?
Hugs to all, Annie
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Annie, darn it's frustrating! At least it's stable but that doesn't help with the pain. I don't agree when ortho says it should not hurt after 1 week post rads, but by this time you should have felt relief. My rad onc once told me that rads are effective for pain relief in 70% to 80% of the time. So you don't need surgery? Hope you get answers tomorrow.I'm curious to know if you started the Meloxicam and if it helped you?
Wishing all pain free days ahead.
Linda
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Hey Linda, no surgery for now but geez it is hurting and I was pain free in that area before rads. I haven't started the Meloxicam cuz I'm a bit afraid of all these meds but talked to dh tonight and think I have to give it a try. Did you say that you take it? I remember someone mentioning they did. I can't say I've had pain relief from the rads to my humerus, hoping it happens soon.
Hugs, Annie
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I got my test results today...from my PET scan...My cancer is very progressive at this point...what I thought last Tuesday with a CAT scan in the ER of a couple of sm lesions on my liver have turned out to be 20 lesions now...after the PET scan...OC told me that my bone mets some of the tumors are glowing RED...that means to what I understood from him is that the Cancer is on High alert...so I am starting Adriamycin tomorrow morning...I am so so scared...it is happening so fast....Carla
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Annie - I alternate between Naproxen, Ibuprofen and Celebrex. I find that after a while, it 's not as effective so I like switching. I was asking because I might add Meloxicam to my collection of pain meds... I've been having pain lately in my back and I think it's my rib met acting up and also around the lumbar region where there is a probable met. Will know for sure on 27 Jan regarding L1. From what I've been reading here, I'm not sure I would want rads in those places.Linda
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Carla, so sorry for your news it must be scary. If you don't mind I'll keep you in my prayers and sending you lots of (((hugs))).Aurora
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Linda, as soon as I have given Meloxicam a try I will let you know how I'm finding it. I like you alternate between my ibuprofen and naproxen. About rads, my L5 was the one I was most worried about and it has given me the least problems, go figure.
Carla, so so sorry. My heart goes out to you and you are in my prayers tonight. I wish I could give you a big hug but please know we're all praying this new treatment takes care of the liver mets and gets everything under control.
Hugs to all, Annie
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Carla, I am so sorry to read your latest news. I can imagine how scared you are, and I hope you can find someone near to offer some support. I, too, will keep you in my thoughts and prayers.
Terre, thanks for the link. I'll check it out.
Hope everyone has a good night.
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Oh, Carla, that's not the news any of us ever wanted or expected to hear. You must be absolutely reeling. I'm so sorry.
Do you think there might be any benefit to maybe getting a second opinion at a totally different medical institution? I don't know where you are in ID, and you'd probably have to go as far as Salt Lake to get to an NCI-designated facility like the University of Utah, but it's just something that's crossed my mind.
Hoping & praying the Adriamycin is exactly what you need!
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Carla, sorry for the extensive liver mets, I am sending you lots of love and healing thoughts. Hopefully A chemo will kick its ass. Are you just getting A or A/C, C is Cytoxen. Anyway I got A/C my first bc dx. Don't be surprised when your pee is red. Also, chewing on ice chips during infusions seemed to help prevent mouth sores. Did you get an echo to check heart function? It can be damaging to the heart, I had to get an echo every 3 months.
I know this was pages ago, but thanks for the two beautiful pictures!
I did ski again on Monday, a little more than 1 hour and no nap afterwards, tho probably should have. Day after (Sunday and Tuesday) not so bad.
Deanna, you would laugh at the little place we go to, so tiny, nothing like those real mountain places you mention. What about cross-country, wonder if your onc would okay that? I've thought about it, but I think can be even more tiring than downhill.
Valerie, for nausea, I didn't hear you mention zofran or compazine, I don't think. I don't know how they compare strength wise to what you tried. I was very nauseous first dx and I alternated those every 4 hours, kind of like u can Advil and Tylonal. I also take klonapen every night before bed, not sure how it compares to avistan.
Annie, very frustrating for you! Hope you can get some better answers.
Hugs to all
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Just popped in for a minute, still have company, but I wanted to give Carla my best, so sorry that you are dealing with this, it's not what any of us want to hear.
My best to everyone else, I'll be back tomorrow after company is gone and I'll get caught up, cheers, Dee
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Oh, know this was pages ago also, but I can't believe also how knowledgeable some of the ladies are! I learned a lot from reading the articles on BCO, a whole 'nother language. And I learn so much from other ladies experiences, and that helps me ask better questions to my onc also. I think I'm fairly well informed, but I'm constantly learning.
I trust and like my onc, but think bring questions, even ideas is a good thing. No one cares more about me meeting my milestones than me and it's good to have SE tolerance/QOL discussions also.
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thanks for the reply! Love that u ski! I'm gonna try to add trilafon. I got zofran. I'll live throught it. From 2a to 9a is the nicest time! Be well and much love.
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Carla - thinking of you and praying for you this am.Hugs - Linda
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Carla,I am so very sorry to hear the results from your PET. I am glad you have an OC you trust and hope starting on A today will kick those liver mets to the curb. Wish I could be there with you, maybe it might be a little less scary if you did not feel so alone. Keeping you in my thoughts and sending gentle hugs.
Jo
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Carla, thinking of you today as you go into your Adriamycin treatment. May it kick major ass, and may your SE's be light and easy.
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has anyone had numbness in their leg and slow to start urine? It's got to be related to my nerves in spine I would think? I did have spinal tumors and they have been stable. Told Nurse Practitioner but she said she would have to run it by doc. I'm nervous.
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Hi ladies,
I've been lurking for several weeks and I agree with Deanna - this thread is so hard to keep up with....but I just wanted to respond to a couple of posts...and say hello to everyone else...
Carla - just echoing what everyone else has said... will be thinking of you today and every day going forward... hoping that Adriamycin kills those lesions in your liver. I am so sorry you are having to go through this... my heart sunk when I read your post. That was the treatment I had two years ago when I had multiple bone lesions (everywhere!) and two in my liver. It was a hard treatment for me, but it did the trick and a few months later I was NED and have stayed that way ever since. I'll be praying that is the case with you as well. I'm with you on the knowledge - the ladies on this board are incredible... I learn so much from their research and information sharing, but I have to admit I am not sure how much I retain. I trust my oncologist completely...I was lucky to find her - at an amazing research hospital here in Denver... so I mostly just follow her suggestions. Sending you love and hugs! Don't forget you have all of us!
Deanna - my oncologist encourages me to ski even though I had multiple bone lesions... all along spine, ribs, etc. They are completely stable now (as of PET scan in November - NED) and she knows skiing is my passion, so she tells me to get right out there! Interesting that we get such different advice. I have only skied once this year - Keystone - and was VERY cautious, although I did take one huge fall and was sure I'd broken everything. I have so little strength... not like before when I could ski anything, all day. I am determined to build strength this season and get some more good days in. I have a DH story similar to yours... I got remarried a few years ago. All my life I swore I'd never marry anyone that couldn't ski (oh, the things that were "important" to me prior to Stage IV) and my first husband was amazing, as our both of our boys. Anyway.. new DH told me he couldn't ski and I didn't believe him...I thought EVERYONE could ski a little bit. First day out on a green run and sure enough, he was telling the truth... he could BARELY ski. Of course, I had to make light of the situation but I did tease him... a ton..... couldn't believe I really DID marry someone that couldn't ski... and then six months later - WHAM - I am diagnosed with Stage IV bone mets everywhere - in a brace for 3 months - can barely walk let alone ski... and now the two of us are about even when we get out there. So - the joke is on me!
Kite - I was also very slow to urinate when I was first diagnosed... I do think it has something to do with the nerves. Hang in there - your nerves are probably recovering too... hopefully it will work itself out.
Someone else posted about pain after radiation and lesions healing...I know my oncologist told me it would take AT LEAST six months for the lesions in my bones to heal, and it took more like a year.... and I really think I had pain for the first six months. I have been on a low dose of methodone since I was first admitted to the hospital in Sept 2012 (pretty sure I am addicted at this point) so it was hard to tell - but I do think it takes a while for the pain to be alleviated.
Hope everyone else is having a peaceful,. SE free day.
XO
Andrea
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Welcome, Andi! Glad you've shared your story with us. Love the husband who can't ski. I had the same, but with dancing. And my current husband not only can't, but won't. He won't even sway to the music! But it's a lot less important than it was back in the day.
Carla - My heart sunk when I read your post as well, but got lighted up by Andi's post. Hang on to hope dear one - sending good throughts your way that this treatment kicks this damn disease to the curb for you!
Hope you're out of the hospital Valerie.
I need to get to work....
Hugs to all,
Terre
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Well, my DH skied when he was younger (well, yeah, he's Canadian) but me? Nonononono. You go down from a HIGH hill at great speed with just two sticks on your feet AND IT'S FREEZING COLD OUT!!!!!!
Leah
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hello ladies! Does anyone know if there is a group for Xeloda? I am starting it tomorrow and have a few questions. Thank you!!
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Andi67, thank you for the info you posted regarding radiation and healing. I think it was my post you were talking about. I finished rads to a few bone mets on December 12th. I received Cyberknife and Stereotactic body radiation therapy. It was 5 treatments in total to each area. I am having some pain still in my humerus and ortho doc said that should have subsided a week after rads were done. I'm finding the pain worse now than before I started rads. Feeling frustrated as I thought I would have pain relief by now, and also the unknown of whether the mets are healing. Your post made me feel better, not sure what to believe anymore from my doctors, they all contradict each other!
Hello to everyone and hoping you're all feeling well. I feel as though I'm fighting a bug so going to bed early tonight. Have my weekly nurse visit in the morning. Do any of you have a nurse checking in on you weekly?
Hugs to all, Annie
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KATE1974, if you go to the Stage IV forum and then scroll down til you get to the 2nd page you'll find the topic All about Xeloda.
Best of luck to you with your new treatment
Hugs, Annie
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Thankyou Annie!!!
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