Bone Mets Thread
Comments
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Interesting Deanna.... my pharmacist was the one who suggested it when I said about my hair being so thin. I will suspend taking it until I do some research. Thank you, this is why I love this site, women helping women. Cheers, Dee
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Wow, so much going on here. I'm sorry about the chemo/hair loss Dee. Hairloss seems to be the hallmark sign of cancer to everyone else, so do what you can to make yourself fell better.
Patty, how are you? Happy to hear you are pursuing a 2nd opinion. Also, do you take probiotics? I was thinking you probably got your fair dose of antibiotics with you hospital stays and your gut is probably all outa whack. Just an idea. Also, I thought of you yesterday as I was downing a soft serve cone. 🍦. I took my own advice after 3 days of escalating pain and got out for a bit. It was good, but went back to bed as soon as I got home and have been there since. Not sure what is causing this flare, but I wish it would go away!
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Good for you, Romansma, for going out despite the pain. I have learned to hate flares. Most of the time I have no idea where it is coming from. Then there are days like today where I had a couple mild pains on my iliac crests, and otherwise it is cutting me a break.
Deanna, your suggestion to Dee, is really very interesting. It just makes sense. I won't be trying it. Oh hell no!
Oh I wish I would get sleepy. No pain. No excuse to take extra pain meds. I wonder if this fabulous respite from pain is from the steroid I started taking yesterday.
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Oh I hate those flares too! But my last one seems to be getting better. I wish I knew what triggers them.Dune - what steroid are you taking if you don't mind my asking.
Linda
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Flares?? Is that why my arm is so painful? I don't understand why the met in my upper arm is so sore lately that I have to lift my arm with my other hand. I was going to ask my onco if I could have it radiated.... should I? or will it calm down again?
Thanks, Dee
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Dee, I had stereotactic radiation to my arm met and it did wonders for me. The pain is pretty much completely gone and the x-ray I had at the end of March amazed the orthopedic surgeon. He said the bone is completely filled in, he can't even see where the met was anymore, all that's seen is a tiny bit of scar tissue from the radiation.
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Thanks Annie, I remember when you had that done. When I talked to my onco about rads she said that I didn't "need" rads until I was taking too many pain meds?? I told my DH that I'm going to lie to her & tell her that I'm taking meds day & night & I'm not getting relief.... bad, I know, but I'm tired of the pain & I hate taking any more meds. Cheers, Dee
*edited to add, that I have a bone scan on the 4th of May & then I go see her on the 26th, hopefully I'll be able to get this dealt with by June.
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Linda, all I can tell you at this time is that they are little green pills. My bird is sleeping on my shoulder, so I can't walk over to get the name. However, I have made a note to myself to provide you an answer.
Dee, I don't know. The best thing to do is keep track of it. I was having to walk with a cane, and there were a good many mets in my pelvis, so that's how they decided that. I would think if you continue to have such trouble lifting your arm, radiation could be an option. It helped me so much!
Bird still on shoulder. He's sooooo cute.
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Thanks Dune.Dee, that's what my Onc and Radio-Onc tell me too. Every time I had rads, it was according to the level of pain, duration and pain meds.
Linda
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Dee, our appointments always seem to coincide, my next bone scan is May 4th as well and I have results and my infusion on May 8th.
Dune, so cute that your bird is asleep on your shoulder. My cat is asleep on my lap. My dh gets upset that I stay so still as to not disrupt her sleep, and then when I get up I'm stiff and can barely walk. The things we do for our pets!
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Linda: dexamethsone 4 mg.
The bird is in the cage and covered up and not happy about it. lol
Yes, annie, they are our babies. It feels good knowing that they like being around us.
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Thanks Dune, Linda & Annie! Any tips on the lie I should be telling? The truth is that the arm is painful 24/7 however, I don't take meds for it, when my back is very sore I will take it for that as I can't get comfortable if I don't. The arm is only painful when I move, like try to lift anything or stretch my arm up. I'm going to talk to my PCP, he's great and hopefully he will give me a bit of direction as well. But you've all been through it & I would so appreciate your help.
Annie, good luck with your scan, I hope it reveals good results. Cheers to all, Dee
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Wow...so much info....yes, Dune, hope you've made your hair appt. I cut mine short weeks before chemo. When I saw a few hairs falling out-day 12 TC in '09, my gal said I had so much hair I wouldn't need a shave for weeks. The NEXT day my 1 yr old grandson, who I was babysitting, and I pulled it out in chunks! I had it shaved and my wig styled that day. The whole fam went & the pic we took afterwards w/DH & 2 grandkids was our Christmas card. People wrote that they thought my hair looked better than ever-until they read the letter...HA! My bald head got me free hors' d'oerves & out of a speeding ticket. I did the ACS program, like Deanna, but my skin was so sensitive my girls got the makeup...they were happy! I dealt w/no head hair better than missing eyebrows/lashes. Blush & lipstick...if you care..most of the time, I didn't care
. I also went to a wig store, saw the one I liked, took the name down, and bought it online for $150 less. I bought a second one on a Christmas special...$50. It was Best Wigs.com. My onc told me I could take biotin for my miserable nails on Navelbine. She said not to take more than 2000 mg..but I'll ask my new onc, just to make sure...thanks for the heads up, Deanna!
Annie..I just think of those rads burning a hole in the mets & new bone filling in...amazing. GG..sounds like you need it stat...QOL sounds terribly affected when you can't lift your arm
And I agree...beautiful dinner venue, but I like the car...almost as much as Linda's pink convertible! What wonderful travels! And of course, Romansma living in Ventura makes me sing Ventura Highway...ahhhh, America & dating DH...1972...most prob weren't born then!!!No Pets (scans or 4-legged...sad me) here. I had 1 w/first dx, now ins says CTs only. My onc was upset at first-going through the same dismal peer review-but then didn't seem to care, as long as they would cover CTs.
Dune...my DH sometimes does the odd question thing w/the onc. I used to just sit & wonder why...let him have his say. Now I contradict. I feel bad, as I think it's concern (or losing his mind-thanks to my dx), but it bugs me-so femara takes over & I become a little nasty. I find out tomorrow if a bone scan is in order for same rib pain....thinking if all whose bones ache & hoping relief..and healing comes soon!
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OMG...I just typed about 4 paragraphs & it didn't post...maybe a good thing for all of you but...ugh. Thinking of all!
Oops...it did post...sorry it's so long!
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LOL RonnieKay. I needed that laugh. I couldn't get to sleep last night, so my mind started wandering and I started crying a little.. I woke up early and in pain, so my mind started wandering and I cried a little again. I got up, ate, took pain pills and xanax so no more tears for me today. Darn tears! Now my eyes are leaking. I went nuts on my hair yesterday. It's like I'm mad at it that it's going to fall out. I'm a newbie at that.
And Dee tell the truth. You need treatment for your arm.
Just saw karz72s post. Fuzzy duckling. How cute!
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I ought to start a groan about family members thread, so please forgive this off-topic post. I think I mentioned I just took some meds for sleep and pain relief. Mom stops by my room and 'asks' me if I'm going to be sure to call the doc to see whether my appt is at 2 or 2:30 because she'd like to get a bath when she gets home (from the gym) - can't change her routine - and of COURSE she must come with me. I set my alarm for 11:30 and she responded in a most irritated tone, the one mom's reserve for their children. I love her and am often grateful for her help, but geeeeeeeeez.
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Moms are always moms, eh Dune? Mine posted something on her Facebook page about an old man getting his phone fixed because it never rang. Turns out it was fine and it was because his kids never called. I'm sure that was a dig at me. I talk to her multiple times every week and also with messages on FB, but I guess that isn't enough. By the way, steroids are awesome for pain. It's the only thing that has broken the cycle for me on a few occasions when the pain got to be too much.
Annie, you really shouldn't be trying to endure the arm pain. Sometimes, getting ahead of the pain for a while will break the cycle. Also, taking anti-inflammatories could help too. I take Celebrex, but maybe you could try Alieve twice a day for a week or so to see if it gets any better. I agree with the possibility of rads for the long term, but another month or two of daily pain is not acceptable. You deserve to enjoy every day!
How are you Patty? Not sure if I missed a posting or not. This thread is overwhelming to me most days. I hope you are doing a little better.
I had my blood drawn yesterday. It was a 4 stick day. They starting looking at my hand and I said no no! If they'd just listen to me about the one faithful vein that almost always supplies! Anyway, hoping my counts are back up. Start 3rd cycle of I branch today. Still hoping the pain this week is a flare and will back of for soon!
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Dee, I' m sure your arm hurts more at night to the point of waking you up several times. Pain caused by movement for me is very hard to control with pain meds. Rads helped quite a lot.Thanks for the info Dune. Another metster mentioned she takes a low dose of the same steroid for pain. I think I will talk to my Onc about it.
Patty, where are you? Hope you're not in the hospital.
Pampering day today - getting my hair colored and lunch with a girlfriend. Love it.
Linda
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Linda, enjoy your pampering day! We all need more of those!
Yes, Patty... are you okay???
Oh, (((Dune))). Sounds like you needed to cry it out. We've all been there. And why couldn't your Mom call herself to reconfirm your appt time? Just sayin'...
Heard something yesterday I thought I'd pass along, even though I don't have all the details. Someone I'm friends w/on FB who also posts on BCO happened to mention that a friend of hers is losing her life to liver cancer that multiple docs have attributed to too much Ibuprofen. I have no idea how much she took or for how long, and didn't have the heart to ask those sorts of details. But when I was first dx'd w/mets and did not want a narco pain med, I was dx'd 600 mg. of Ibuprofen, which I'm sure I took multiple times a day. And 800 is also available as an RX. So just in case anyone here or lurking knows anyone who is on high dose Ibuprofen for anything, I'd certainly look into any possible increased risk of liver cancer!
RonnieKay, I totally recognized myself in your description of contradicting your DH in a not-so-nice way, LOL! But it can be so frustrating when they ask something that seems disjointed or obvious, and I have to remind myself of something a psychologist once pointed out -- that our spouses or other family members -- as concerned and caring as they might be -- aren't on BCO, reading new research, etc., so aren't nearly at our level of bc knowledge. I remember shortly after that conversation telling my DH something bc-related, watching his reaction, and suddenly realizing -- WoW! -- he doesn't really understand what I'm talking about! It was quite an eye opener and made me aware of the significant knowledge gap that exists, at least in our home.
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Ahhh...thanks Deanna. I'll take that wisdom with me today
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Oh Romansma, 4 sticks is unacceptable. Then you get all tight and it hurts more. Hate it! I only have one trusty vein too, so that's a positive for the port for me.
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Enjoy your pampering day Linda. Such moments are really important. About the steroid, I did not Hz it today because of no sleep last night. Gotta blame the new kid in town when it might just be me trying to cut back on xanax as a sleep aid. However, I definitely had less pain yesterday and didn't have to even think about taking oxycodone. However, laying in bed without sleeping caused me a great deal of pain in the wee hours if the morning, so I think I will try a half dose tomorrow.
Deanna, I felt weird crying about it, so thanks for making me feel so much better about it. Most of the time we take it in stride, but then I get afraid for a bit, the kind where you want to be held, but my mom's not that kind of mom and it's hard to cuddle with a cockatiel.
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Agreed, Hope. 4 sticks is too many and totally the tech's lack of experience or finesse -- not our problem, as I used to believe. I now share everything I've learned about thin veins, butterfly needles, heat, angle of approach, etc., with anyone taking my blood, and that my allowed limit is 2 sticks. It's amazing how fast they call someone more experienced! Oh, I also drink enough water the day before and day of to float a boat -- literally 5 or 6 glasses before I get there. It really helps.
(((Dune))). Reaching out to hug you! Hope you can feel it!
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Have fun Linda! Lunch with a friend & getting your hair done are 2 of life's little pleasures.
Deanna, this is part of my worry, that taking too many pain meds may cause other problems. I already have developed digestive issues, not sure where that's coming from.
The last time I talked to my onco about getting rads for pain, she asked what pain meds I was taking & I said none, that I just suck it and she said I wouldn't be getting rads until I was taking pain meds for it. So this is why I'm asking for some guidance on what to tell her. She has a pretty high BS meter & I need to get my story straight.
I did a bit of research on Biotin, it seems like they talked about dosages of around 5000mg causing some cancer cell growth. I am taking 1000mg, not sure if this is harmful or not. Hate to stop taking it as my hair has finally stopped falling out.... tough decision.
Romansma, gawd, 4 sticks, awful.... what we have to endure sometimes. That's why I ended up getting a port, it's just easier. I make them do everything through it, no more arm or hand sticks for me.
Dune, a good cry is sometimes what you need. Get it out! and then snuggle up with your birdie (sounds a bit naughty but you know what I mean!)
It's a beautiful sunny day here, I'm going out to wash all the pollen off the back deck & get it ready for sitting in the sun having morning coffee with DH. It's the little pleasures in life... have a good day everyone that I've missed, sorry this thread just gets too long... cheers, Dee
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Dee, we were writing at the same time. Thanks for looking up the biotin research. I don't know... I'd be very cautious about anything that could promote cancer cell proliferation. And for what it's worth, I've also had some digestive issues recently that I think are from Anastrazole.
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yes, I know Deanna, I've been thinking about the Biotin. I think I will stop it for a while & see how my hair does. Vanity is a terrible thing. I always had such thick hair & since I lost it with chemo it came back in very thinly & seems to fall out so easily. Interesting that you say you are having issues with anastrozole. It could be a bit from that, but I was having it before then.
That's how they found the mets, my Dr sent me to the surgeon because of the digestive thing & as an aside I mentioned that my tailbone was sore & he sent me for a bone scan. I still have the digestive problems though taking a probiotic has helped alot.
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Had a really nice day today. Felt almost normal. Went to the mall by myself, bought myself a new handbag and a birthday present for a friend's party on Saturday. I have been afraid to go by myself lately, but I did it today and IT FELT GREAT!! Myra
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Thank you ladies - It does feel good to have these pampering days. I love this girlfriend of mine - I've been postponing this lunch a few times because of flare ups - but she's so supportive and always there.Deanna - that Ibuprofen is worrysome. I take 600 mg every 6 hours. Always something.
I agree with you Dee that vanity is a terrible thing. My hair has always been the barometer of my moods LOL. My hair has always been thin and thinned even more when I started Femara. But now back to normal. Last week I bought a stuff to fortify my eye lashes (I seem to be losing some - old age or tx?). I paid $40 for a small tube. How's that for vanity?
Dune - I have crying spells from time to time. It helps.
Linda
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Hi all. Back from Florida and just got caught up here. Dune, sorry about the lung mets. but it sounds like the plan of attack is a good one. I already have short hair, but I wouldn't want to lose it completely -- I've got a lumpy noggin! But there are worse things, for sure.
Regarding ibuprofen, I have taken quite a bit of it over the years for arthritis pain, and it still works great for me, even for the little bit of bone pain I get from the met on my upper arm. I do take much less after having my second knee replaced last year, however, and it was always a concern of mine. My mother-in-law has worse arthritis than I do and is an artist, so she was taking a lot of it in order to keep working on her art. Last year she was near kidney failure as a result, and now she can't take anything for the pain. I had always heard about the possibility of kidney damage, but never a cancer link. I rarely take it now as I have no significant pain, but it still works well when I do take it. I haven't needed anything stronger yet, thank goodness.
I've been doing a lot of heavy-duty cleaning and purging in my house lately, and it's been tiring even without symptoms of the bc or treatment. I can't imagine trying to move while feeling weakened or sick. But I understand the desire to simplify and downsize. I have felt that way since my latest dx.
Patti, I hope you're getting some answers. Something has to to change for you, and soon!
Great trip to Florida to see my sister, but disappointed with the weather. Not much sun. It was deliciously warm, though quite humid at times, but lots of clouds and some rain. We were on the plane on the runway in Tampa, and about to take off to go home, and huge black clouds rolled in with rain, so we sat there an hour before we could finally take off. When we got home, my sister texted me that there had been tornadoes in the Tampa area. But we still had a great time. It was a good break for us, and she was so excited for us to come. She just moved there last May, and it's been hard for her to learn of my dx and to not be here. But she was reassured that right now I am fine and responding to treatment very well and I appeared to be my same old self.
After reading all the posts from the last week, I again realize how blessed I am to have such good insurance. I had my first PET scan in December, and it was no issue. Same with the MRI in January and all the other CT's and bone scans. They had to get pre-approval for the Xgeva injections, but those, too, are ok'd. I have had to pay something toward those, but now I've reached my out-of-pocket max, so I won't have to the rest of this year. Even with good insurance, I have plenty of medical bills, and I can't imagine having to worry about that and cancer, too. It's a very expensive disease, that's for sure.
I hope everyone is having a decent day. Hugs to all, especially those who are anxious and in pain. We're here for you!
Sharon
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Here we are at lunch in Tampa before catching our flight home. The cute blonde is my wife Rebecca. 0
