Bone Mets Thread
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HopeFaith - I can relate to your stinky thinking. But, once you get a tx in place and good pain meds your frame of mind will change. I was in so much pain when I was dx in Nov 2013 and no matter what the docs said, I didn't believe them. I thought I was heading for hospice. When I had a tx in place, pamidronate monthly infusions and rads to a few places, I could not believe how well I felt. I sometimes have pain flares and go to dark places but bounce back when pain is controlled. All this to say, hang in there, it will get better. Good luck with your appt tomorrow, I suspect you have a long list of questions. Will someone accompany you? 2 heads are better than one. Sorry no wisdom from me regarding children - don't have any. Wishing you the best and will be thinking of you tomorrow. Sending you big virtual hugs.
Romansma - Damn, I hope things turn around quickly. I read on blogs (but can't remember where) about Xtandi - some people have SEs such as fever, nausea, vomiting, the big D. They don't seem to be listed as SEs on Xtandi info unless I missed it.
Dune - praying your Mom is ok and hoping you're enjoying your week off tx. Your post reminded me I have to get back in tx with my acupuncturist - I took a break for the summer - but I suddenly remember how good I feel when I see him every 2 weeks.
Annie - Hope you get answers from the pharmacy and that you feel better soon.
I like knitting but nothing complicated. I tried crochet - like Myra - I get more stressed than anything else. It looks so simple. Having a hobby is a good escape for the mind and pain.
Terre - hope you're not working too hard and that your house purchase is on its way if it's meant to be.
Praying for Patty and sending her healing vibes.
I'm feeling better this morning and slept like a baby. Life seems much brighter today.
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LindaLou - We must have been writing at the same time. Hope it's just a routine follow up.
Thank you Jobur!
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Good morning all!
HFC, I had rads for pain to my sacrum, spine, rib & upper arm & it has helped tremendously. Can't help you with the chemo part as I had chemo too many years ago before stage IV.
I just saw Jobur's post about Linda's BD, Happy Birthday if I missed that post, sorry! We must now celebrate each & every one of them to the fullest!
Annie, gentle hugs that your pain subsides.
Lindalou, Our car isn't a Miata, it's a Honda S2000. Hope you get some relief as well. A friend who is a Dr, described to me how T/I combo could work much better than stronger drugs, they bring different strengths to the table which enhances the others ability to control pain.
Romansma, sorry you've been so unwell. I'm afraid while I was gone I just skimmed through the posts on my tablet as the connectivity was spotty at best.
I'm leaving shortly for the ferry lineup, my bone scan is today. Hate those, always have to take anti anxiety meds and then I don't get the results for 2 weeks. It's the waiting that sucks.
Hugs to all that I missed, sorry. Take care, Cheers, Dee
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Thank you Dee. Good luck with bone scan. And yes it sucks to have to wait 2 weeks for the results. I'm scheduled for CT and bone scan on 14 and 16 Sept and in the same boat as you - results 2 weeks later. Take care.
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Good Morning all
I think I will make a mess of keeping everything/everyone's recent posts straight, but here is what I can remember right now.
Deanna- how are you feeling. Know you had a few rough days, then went out, right? re the St. Johns Wort- I mean the oil or the tincture. I really do not believe in herbal capsule supplements. The only other way i incorporate herbs, other than cooking, is nourishing herbal infusions. Some examples are Oatstraw for calming and keeping fluid, Linden for inflammation, Nettle leaf for energy and calcium. Comfrey LEAF ( not root) for flexibilty and resilience- this one I will be adding as I haven't had a specific need until now for it. anyway that's very brief...there are others but that's the gist. And this is food/nourishment not 'taking more stuff'
Linda E glad to hear you are feeling brighter today
Romansma- I am sorry the 'virus/mystery' is still 'working you over' and that goes for everyone who is dealing with nausea and pain. Annie, I think you said you were under from your infusion
Dune- I hope the acupuncture provides some ease, I have to miss my appointment today! I hope things with your mom get sorted out; I can only imagine what it feels like having you both struggling at the same time. re my education I have been a practitioner for many years. and studied massage at the swedish institute as well. also studies in shiatsu and ayuveda... lifelong student you could say. When did you study/practice acupuncture?
I started Tamox on Saturday and the Herceptin on 9/14- if all is clear with the MUGA test this thursday. Struggling with a really cranky and unstable left hip and a spasm on the right side of my chest. Trying to breathe and not freak out too much byt the last few days have been a struggle.... as I said on a post in the Crazy Town thread I've been at the intersection of Manic & Inconsolable for the last few days
I know I've missed a bunch of people....apologies, but I wish ease for all of you!
Hugs
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Hugs to everyone not feeling well.
Woke up with burning pain in my back. Could not get right out of bed, gulped my Oxycontin 40 mg. I thought I would go to the hospital and perhaps be admitted. Half an hour later I felt mildly better and thought it best to get out of bed and try to work. I am at work now and have been somewhat productive, mets w quite a few patients. The pain is worsening again so will stay well medicated. Sorry if I'm a broken record about this pain but it's hard not to think this is the end of the road when there is so much pain. I get my Xgeva and Faslodex shots tomorrow afternoon after work. I know that will give me headache but I will stay super hydrated tomorrow.
LindaE- so glad you are feeling better today and HAPPY BIRTHDAY!!!!!!!!!!!!
Dee- good luck w the bone scan, try not to worry.
Gaia-hope that hip starts behaving. I am having knee joint pain which I am attributing to Faslodex, but it's not nearly as bad as my met pain in neck and upper back. Keep yourself nicely medicated so you don't freak out as much.
Dune- good choice to take the project to a professional, now you can just hand it over and relax! I am hoping your mom doesn't have cancer
I hope acupuncture helps you. It isn't covered by my insurance so I can't get that.I have taken up coloring again. Like an adult coloring book and colored pencils. I also made my daughter a button bracelet. Buttons on a piece of fabric. I am not too crafty so this is the best I can do LOL!
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Cjanet, I am sorry to hear about your ongoing pain. I know you made it through the vacation until the end with less pain, am I correct? If so is there anything that may have helped while you were there? - of course the obvious that you were in a beautiful place apart from everyday responsibilities, but could there have been something more subtle, that you could 'carry back with you" Na dapologies if I got the less pain wrong- just thought I heard that in one of your posts when you returned.
I don't have pain meds, just doing advil, which abates the achey-ness just fine. It's the instability/weakness that is freaking me out more!
I think coloring is great! though I have wanted to re-learn to knit as well
warm hugs
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in bed and want to stay here. I cant imagine a life without pain. I cant bear the thought of it getting worse. I keep thinking what will it feel like to die from this and I'm scared
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Happy September to all! It seems as though the new month is not bringing many good things yet, as many of you are feeling unwell and having a lot of pain issues. I pray that things will improve for us all. Annie, hope that you are feeling better from your infusion, and your onc can figure out why you are feeling bad. Dee, good luck with your scan...I HATE that we have to wait so long for the results! Like we don't have enough anxiety. Dune, hope your acupuncture went well and your project looks like it's going to be Great! Cjanet, I pray you get some pain relief soon . I have seen articles on adult coloring books, my husband has colored for years, and always said he found it calming.HFC, my heart hurt for you when I read your words, I so feel for the pain and fear that has you in its grip right now. As Linda E said, once your pain is under control, things may become a little easier. sorry if I missed anyone, not intentional at all, just hard to keep up.
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I had rads to my right hip in June and the pain had diminished to the point I didn't need to take anything for pain. Last Friday night I went to a baseball game with my hubby and climbing all those steps killed my hip! I'm still having pain, but my oncologist just thinks I over did it. The only thing I have to take is Naprosyn or Celebrex. He doesn't want to give me anything stronger and I'm not sure I want to take any narcotics yet. I hope this gets better quickly, I'm going back to work in 3 weeks.
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Happy Birthday, Linda! So sorry it's not one of your better days. Hopefully, you will soon be feeling much better and can celebrate when you do. And thanks for the heads up on the SEs that go along with high calcium levels, which are probably pretty common I would think w/bone mets.
Sending positive thoughts to you, Dee, as you head off to your bone scan.
Thanks for the additional alternative info', Gaia. I understand that you weren't suggesting ingesting St. John's Wort, but after the strange reaction I had when I did, I would be afraid to put it on my skin, too. And Ellelou, thank you for the warning about using it in any form with Ibrance. I have had so many crazy SEs from that orange pill, I certainly don't want to dilute its effects!
For those of you dealing with pain. Has your onc or a pallative care doc reviewed your pain med(s) recently? I'm just wondering if maybe you aren't on the best ones for your current needs. I've had the same thoughts about mine, and I know it's a pain (no pun intended) to think about trying something different, but just a thought as I read what too many of you have been going through, which I know all too well can be not only physically exhausting, but emotionally as well -- not just for us, but for our families. I know my DH's lingo about my situation has changed a lot in recent weeks -- from "when" (as in when you're feeling better) to "if." I found that subtle shift in his mindset and vocabulary every bit as depressing as the pain.
Oh, I hope and pray that the new month will bring better news and pain relief to everyone who needs it! Deanna
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Geeze...Sept is off to a rough start for a lot of us. Not fun. Wishing pain relief, anxiety relief, good scans, and good results for everyone.
LindaE - Happy birthday!
We're waiting on the valuation report for the house we want to buy. If it's ok, then full steam ahead.
Sorry not to address everyone individually; will try to do that tonight. I'm at work but just want to sleep. Both DH and I have had gasto issues and I'm now thinking it's our water tank. Going to buy some bleach for the tank and some bottled water tonight and see if that helps. Neither of us feels sick per se, just constant gastro upset. Lovely. Can't wait to get out of this rental!
Sending hugs and good wishes to everyone.
Terre
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Happy birthday Linda! If you don't feel well you may have to just acknowledge it, and when you feel better, party like it's 1999.
HFC,, I know what you mean. However, this past Sunday I had no pain. No pain and no nausea. I forgot what that felt like. It only lasted a day, but it was a great day.
Christine, you just keep sharing here. I have felt badly about complaining about my pain and then the nausea, but nobody seems to get annoyed. I always feel held by their comments. The pain is truly a constant reminder of the cancer. That's the worst part about it really.
Gaia, good luck with your MUGA test. I was practicing acupuncture from 1995 to 2000. I never had the courage to give up my job in computer operations, so I gave it up. I don't even remember the points. If I did I'd be moving some energy around myself.
Hi Dee. Good luck with your bone scan.
Deanna, I'm sorry to learn of your dh's shift in vocabulary. I hope you get to feeling great, if only to adjust his thinking.
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Thank you all for your birthday wishes. I had a wonderful lunch with close friends. Good company and way too many calories - but who's counting? I will party like it's 1999 later LOL!
No one here should ever feel sorry about complaining, saying how they feel or what they are going through. If we don't say it here, where will we? And verbalizing what we feel is, IMO, necessary. This is no walk in the park. It's not for sissies (not sure about spelling) as Romansma once said.
Sweet dreams everyone!
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For anyone suffering with back pain, myy DH came home today with one of these for me, and omg... what a relief! He said he'd seen it on TV and wondered if it would help me, and I can't believe the difference it's instantly made in my back/rib pain, allowing me to stand much straighter. I'm small, so it pretty much covers my entire back/rib area -- from waist to shoulder blades. I think he picked it at Wal-Mart, and it looks like Target has them too. Just wanted to share...
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Hello, dear ones! I have been keeping up with you all, but only tonight have I been able to sit down at my computer to join you. I have my update from my CAT scan and bone scan. There has been no spread into any vital organs, it remains only in bones. I am now at the end of my second week on Arimidex with no problems, and will soon begin Xgeva shots. I am very relieved, and would like you to know that I actually felt physical vibes of peace from the encouragement from everyone here when I was at my oncologist's appointment. Thank you Deanna (I followed your advice and did not look back at my own copy of the results), LindaE, Amy, jobur, Lynnwood, Annie, Gaia, and everyone else for your caring thoughts.
Today is someone's very special day, I see! Happiest of birthdays, LindaE, I'm so happy I've arrived here in time to celebrate you! I like to look at flowers and nature on a friend's birthday, and think of them. I chose the brown-eyed Susans in my garden today to look at, and think of you. There's a story behind them...I didn't plant them – they "volunteered" to come and live with me this summer, and they really brighten up the garden bed. I am very glad you feel better today. I will be there in spirit for you, too, Linda, when you have your scans on the 14th and the 16th. xo
My dear Deanna, I can relate to your depression upon noting your DH's reaction to your pain. It breaks my heart, too, when I see my fiancé wince, as when I have been in the midst of pain, or frightened, or when I talk to him about possibilities, etc. I hope you're feeling a little better, because I wish for you a great relief from pain, xo...as I do for everyone here. I was wondering what kind of peppermint oil you use, when your DH massages the pain in your back and ribs. Was it pre-mixed/diluted so you could just use a few drops safely straight from the bottle? I've read conflicting information about it, but I am interested in it. Would you mind sharing? Thanks!
Rachel1, I sent you a PM with the information you asked for, and I was wondering if you received it. I hope all is going well with you.
Dunesleeper, I truly hope your acupuncture will help you feel a lot better. When I read about your mother, I thought how very much I hope she will be OK. It's a joy to read your posts, Dune! (I, too, loved your request for the good looking fella to do the massage!)
Xavo, how did you enjoy the Whistler and van Gogh exhibit at the Clarke? I saw the statue of Whistler's mother in Pennsylvania, and am looking forward to seeing the painting itself. We are going next week, and, by the way, it takes just about an hour for us, too. Nice to be neighbors! Thank you for the helpful information about being both ER positive and mets in bone only.
50sgirl, did you decide to register for the DF forum? I tossed it around, as well, but decided against. I think yesterday was the registration deadline. Please let us know if you go. I would love to compare notes now and then about our respective progress with Arimidex. I'm so glad you're doing fine. So am I, so far. So nice that we're neighbors. I have to tell you, I've been reading that they're forecasting a nasty winter for us!
Thank you, txmom, for the encouragement. My oncologist told me I don't have clear tumor markers, and she also will be checking my progress with scans.
Lindalou, you definitely must come to experience autumn in New England!! And you are right, I am so happy to be in such good company here.
Hi Heidi! I was interested in your information about the study on risk of progression after four years – dipping to 2% annually. I found that helpful, and am holding that information close to me.
Annie, I hope you're feeling much better today. Breathtaking is the perfect word for your bridge – in – color photos. Breathtaking!
On the alcohol topic, my oncologist said she wouldn't want to see me drinking regularly, but that a glass of wine, or a cocktail, now and then, is not a problem.
HopeFaith, I so very much hope your pain abates soon. Here are a lovely few lines of poetry by Emily Dickinson--your name made me think of them, and I hope they soothe you: "Hope" is the thing with feathers – /that perches in the soul – /and sings the tune without the words – / and never stops – at all –
Just a word about beloved knitting – there are many quick and easy beginner videos online, and it really is fantastically therapeutic and enjoyable. Especially with an easy beginner's pattern, a cup of tea, and music.
Hugs and love to everyone.
~ Valerie
xo
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LindaE, I hope you had a very, very happy birthday celebrating everything that is wonderful about you. Hugs
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Hello to all,
I hate when I get this behind, what a few days it has been, I'm finally feeling better this evening. That lasted just a little too long for my liking.
Dune, sorry you're worried about your Mom, I am praying for her to be ok. I hope your accupuncture appt went well today. How did you make out with your project?
Myra, I thought I drank alot before, during and after my infusion. Not sure why this happened, it was worse than the first time I had it, very strange.
Lindalou, thanks for the hug. Hoping the call from your onc is nothing to worry about. The migraines from the faslodex sound terrible, maybe going back to 1 shot will reduce the severity of them.
Linda, Happy Birthday again and glad to hear you enjoyed your lunch with good friends. I stopped counting calories, I enjoy eating too much. I told dh and the girls when I don't have a good appetite we've got something to worry about.
Dee, beautiful pictures you posted, I really want to get out your way. It would be so nice to meet you if I get there to visit my friend. She's spending the rest of the summer in Florida. Praying all went well with your bone scan and visualizing good results!
gaia0132, best of luck with the MUGA test, we'll be with you in spirit on Thursday. Glad you've started the Tamoxifen and praying for no se's. I felt completely normal on it.
Cristina, you are not a broken record, so sorry to hear you are still in so much pain, sending hugs and healing energy.
Hydranne, I like the sounds of an ice cream diet, one of my favorite things to eat, especially in the summer.
HopeFaithCourage, so sorry you are feeling so scared, I feel the same when the pain is really bad. My nurse told me there is never any reason for someone to be in pain, there are plenty of meds out there to help us, we just need to find the right combination. I am positive you will feel better once treatment starts.
Lynnwood, thank you for your well wishes, feeling better this evening, finally.
terrij152, hope your pain improves quickly, I take Celebrex daily and when it's not enough I add Tylenol or Oxycodone, a half a tablet is usually all I take because I don't like how I feel with them.
Terre, the gastro issues sound awful, I hope you can figure out what is causing this. Sending positive thoughts that it will be full steam ahead with the house purchase.
Deanna, thanks for the info on the back support. If I can find that at Walmart I will be getting one right away because I feel like that would help me. I've also noticed subtle shifts in my dh's mindset, gets me thinking he's starting to come to terms with the reality of this.
Hugs to all, Annie
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Valerie, so glad to hear you got your scan results and that it remains bone only. I'm also very happy to hear the Arimidex is treating you well. It took me so long to write my post that by the time I submitted it I noticed your post. So nice of you to address everyone individually, I was really struggling tonight to remember everyone and afraid to flip back and lose my post. I'm glad you enjoyed the photos of our bridge, it's even more spectacular in person with all the lights reflecting on the water. On Canada day they had the bridge lit up red and white, it was pretty neat to see. I'm glad you've joined us here and can feel our positive energy and encouragement.
Hugs, Annie
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LindaE, Happy Birthday!
HopeFaith, the dark moments will pass. Hang in there!
Valerie, the Whistler and van Gogh are both wonderful. I did not know that the Clark has changed quite much. Had not been to for a while. The Japanese architecturer's design is very nice. Beautiful water fountain, large, tranquil, cool. Do go!
Lynn50s, me too, curious about you going to DF forum. Are you?
All, good night and good morning!
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I have a funny story to tell you tonight. DH took me to my bone scan & because I'm so claustrophobic I must take ativan, 2 of them about 1/2 apart. After my first appt, getting the injection, the nurse told me to go eat lunch. I asked if I could have a beer with my curry? She completely agreed that that was a good idea.
I don't drink much & never take anti anxiety pills, so the combination hit me like a ton of bricks. I had no problem with the actual scan part, because I think I fell asleep!
It's 10 hours later & I still feel pretty loopy. Never, never doing that again! Good night girls, I'm off to try to sleep it off! Cheers, Dee
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Thank you for all the sweet encouragement! ! I feel better . I've been doing too much because I don't want to disappoint anyone . My mom had a talk with me about slowing down. She so good to me. I lived away from her for over 15 years l i am so grateful she lives close now and takes me to all my appt and checks on me when I'm sick. With my new insurance I'm going to see about a pain specialist in my area. I need a pain med change for sure . Love and hugs to all. Appt with Mo today and a therapist appt for on my sons. With my mom and grand baby
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Sorry about the typos my phone does not always cooperate
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Dee - your post made me laugh!
HopeFaith - don't ever worry about typos - we read typo. Just happy you're posting and getting insurance!
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Thanks!!
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Good Morning
HFC- it is good to hear you have an appt. for pain specialist and therapist. Having a plan alone often helps. I wish you and your family well.
Dee- Loved your story. Sleeping through any scan would be heaven!
Hydranne- I'm having PT too...just gentle stretches for now, because my ribs are so fragile. Is your rash painful as well? Hoping that settles down for you.
I see my surgeon next week to discuss a brace. I'll let you all know what I find out. I had a full body brace for T-spine before my surgery and that helped a lot.
Good Wednesday to all...
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Good morning all,
Hydrane - good to hear your back is stable. Now if that rash could go away...
HopeFaith - Oh so happy you're feeling a bit better and appts scheduled. Your mother is right, slow down and accept the help. We all need it sometimes.
Dee - Woohoo, that's quite relaxing! You gave me a good chuckle this am.
Annie - Wow that's a long time to feel crappy after an infusion. I'm curious to know if you heard from the pharmacist.
Lindalou - hope you get that brace and that it helps you and comfortable.
Wishing you all a good day and sending hugs to all of you.
All your kind words about my birthday made me so happy. Thank you again, you girls are the best! Pamidronate infusion today followed by hairdresser for an overdue coloring before I crash for 48 hours. At least my hair will be done - how's that for vanity? Oh and electrolysis for eyebrows unwanted hair near my lips LOL
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Good morning to all,
Hydranne, yes I'm definitely feeling better especially today, I thought that it was never going to end. I'm glad to hear your back is stable but I'm wishing your rash would go away. Enjoy your little trip, I'm sure it will be nice to get away.
Dee, well that was a good morning laugh for me, I can just picture you all nice and relaxed after your ativan and beer, that combo would have hit me like a ton of bricks too. I hope you're not feeling too loopy today.
HopeFaithCourage, I agree with your mom, slow down and take whatever help you can get. I miss my mom terribly, she passed away a month before my breast cancer diagnosis. I'm fortunate to have an older sister that helps me out alot when I need it.
Lindalou, glad to hear you will be seeing the surgeon about a back brace, please let us know what you find out. For now I may try the one that Deanna posted about yesterday, maybe it will help me. I find my back gets very weak and I just can't support my own body weight sometimes.
Linda, I'm glad you had a Happy Birthday. A day of pampering will be good for you. I did that yesterday, hair appt, eyebrow threading, upper lip waxed and chin hairs removed! Yep every time I turn around another one has joined the group, started with one and I'm up to 6. At this rate I may have a beard soon, wow that is not funny! Good luck with your infusion and I hope you do not experience any side effects like I did for 4 days, I still can't believe it. No call from the pharmacist so it is a mystery why this happened this time.
Well it's a seize the day kind of day for me today. Off to my best friend's house today for a pool day and bbq and with this heat wave I will definitely be in that salt water pool, hoping it refreshes me and helps my aches and pains!
Hugs to all of you, Annie
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Question about hairline fracture. I was dx with bone mets --hips, spine, lower back and ribs in May. I did radiation on hips, pelvis, a rib and lower back. My left hip has been aching. It's also the side with the pelvis fracture, which still hasn't healed. I'm walking with a crutch. I'm out of breath after 20 steps, I'm assuming from lack of exercise. My leg feels like I'm dragging a dead weight. Is this all normal?
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Rachel, that doesn't sound normal to me, can you give your Dr a call? Quite often the medical ass't can just ask the Dr if it's serious enough to come in or to wait til next visit.
Linda, We celebrate Birthday week in our house! It's a great excuse to have a fun week, all blamed on the birthday! Getting your hair done is a nice indulgence for you.
Hydranne, I had a terrible rash along with one of my implants becoming gigantic. They never did figure out the cause, nothing worked on it. They did an US and thought they would drain it, there was nothing to drain. Took about 6 months to go away. It was down my arm & across my chest. It looked so much like bruising that my pharmacist kept giving DH stink eye because he thought DH was beating me. He knows now that he doesn't
Annie, the pool sounds lovely.... jealous. Lindalou, keep us posted on the brace, sounds painful. HFC, good for you!
After my little ativan/beer incident last night, I sure did sleep good, but I still feel a bit loopy, so I won't be going up on the roof to clean the gutters! Staying home to bake stuff for the freezer.
Raining here, thankfully my naked rain dances seemed to have worked, the neighbours are also thankful.... Have a good day everyone!! Cheers, Dee
*editied to fix some dreadful spelling mistakes*
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