Bone Mets Thread
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Good morning all!
Thank you Linda for your PM asking how I'm doing. I'm still have terrible problems with a reaction to my new prescription to anastozole. Migraine type headaches, swollen, bleeding tongue & dry, dry mouth. Onc says up to 2 weeks before I could see any change, otherwise she will change meds on me.
I had my pamidronate infusion yesterday & got home feeling just awful. Headache & sore throat, thought I had the flu but seems I don't, but still feel bad today. Sorry, I've tried to keep up on the thread, but the headaches just don't let me concentrate.
Take care everyone, Dee
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Oh Dee I'm so sorry that your feeling so rough. With the weather we are having right now it's perfect to hunker down with some soup and rest. I hope your side effects disapate quickly and you find some relief. Thinking of you over the pond.
Wendy
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Aww Dee. That sucks! Hope the SEs stop soon and you're feeling better soon.
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Oh, Dee, it sounds like you're having a really rough time right now. I'm so sorry. I don't understand your onc making you stay on a med that gives you migraines and other SEs. I also just checked the list of Anastrazole SEs, and I don't see headaches or migraines on it -- just body aches -- and (listed under severe but uncommon SEs) to report any sudden headaches if they're severe, which you already have. If I was in your situation, I'm not sure I'd keep taking it unless you see an immediate improvement from switching brands. JMO...
Editing to add (rather than post again)... I'm still walking, and feeling much stronger because of it. The 2 mile route seems a lot less effort these days, but it will probably remain my daily goal for awhile.
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Lynne, I'm so sorry to hear about your recent challenges involving DH. I'm praying that all comes back with good results and it is a problem of the past! Dee, I'm heartbroken to know you are suffering. You are nearly always active and up beat. Wish the se's would just disappear. Terre, how long until the move? I bet your tripping over boxes and eating off paper plates by now. I'm excited for you! Anyone heard a peep from patti or dune? Deanna, you are incredible to walk 2 miles a day, a real inspiration! I am feeling good these days, I'm scared to say it out loud, but I think that something is working. Weather it be the CBD THC or tamoxifen. Maybe I'm imagining things. The pet in December will tell all. Either way, I feel good and feel less pain. So for now I should just feel blessed for that! The thread is so busy that it's almost intimidating to try and post. I can never remember everyone. Love to all Chelle
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hello everyone. Met with the oncologist yesterday about the mets on t2 spine. Pathology not complete yet relative to the hormone status but confirmed mets. Received my first monthly shot of xgeva. Started aromasin today and hope it is better tolerated than the 5 week period I mas on femara. Not much else to say because it does not seem real still. Have my 5 year old niece here which is a welcomed distraction. I hope to be as strong as ya'll someda
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Thanks everyone for the support, it sure helps. I hate the way one day you're doing great, shoveling gravel & moving rocks
and the next day you feel like crap.Deanna, the headache & flu-ish is from pamidronate yesterday. The SE's from anastrozole are from the new brand. I was doing great on it, then our Cancer agency changed brands & it's one of the fillers that I'm allergic to, but we don't know which one. They have changed my brand again but they are unable to get the brand that I was doing good on, so this is a big experiment. I don't want to change meds if I can help it, I would rather tough it out to see if this works out. If I'm not feeling better in 2 weeks, then she's changing my meds.
I'm taking it easy today, trying to feel better. We've have tickets for Billy Connolly tonight, I've been looking forward to this for months now... taking pain meds & a nap.
Mab, any distraction is good. Fingers crossed for good results on aromasin. Chelle, I know what you mean about being intimidated about posting, there's so many of us, I feel bad if I inadvertently miss someone, as I don't mean to.
Take care all. Cheers, Dee
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Dee - Billy Connolly! How fun! Hope you feel good enough to get some good belly laughs.
Mab - it does get better with time, honest. And distraction is good.
I have a bone scan tomorrow.
Movers come two weeks from tomorrow (23rd...remember, we're a day ahead). Currently trying to get the yard back under control. It's rained and rained (as you know since I whine about it), and then it suddenly got warm. Grass mowed two weeks ago is over knee high already. And the raised beds have waist-high weeds. I have 2.5 raised beds (of 6) to do still. I haven't done any packing, but DH is being amazing and sorting, packing, repacking, moving stuff around, etc. We get the keys on the 20th (Friday) and plan to move as much little stuff as we can over the weekend. So DH is putting the stuff for us to move up on the same level as the garage so it will be easier to cart out. Can't wait to have this over and done with! And to be in a house of our own. Hang pictures where we want. Plant what flowers and veggies we want. And have fresh free range eggs! We go over on the 16th to get chicken and riding mower lessons.
Hugs to all,
Terre
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Has anyone had IBC that led to bone mets? I had IBC, Stage 3B in 2011 and was cancer free for 3 years and 5 months. I thought I was all good until I got the bone mets diagnosis about 3 weeks ago. I can say that the meds for this are a lot easier on the system than chemo was. Sometimes I have ups and downs coping with this disease. I guess over time you get better techniques to handle this. I'd like to hear any of your stories, especially people who started with IBC, but please feel free to share if this was not your diagnosis too.
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Thanks all for wishes. Have been reading but not posting as treatment schedule has been a bit awry due to platelets. Rad onc wants to radiate my hip again but not until platelets stabilised as the radiation knocks out some platelet producing bone marrow at least temporarily. I wanted to get it done before Xmas trip but not sure that will happen. Good news is they think the new platelets drug Eltrombopag (called Revolade in UK) may be working as my platelets came back up after last chemo without additional treatment. Test will be with next chemo due Friday. Also got scans coming up later this month so anxiety creeping. Good wishes to all
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Hi Bosco19,
I hope the drug Eltrombopag is working to bring your platelets back up. I hope it works out for you with the chemo. I will pray that your scans come out good and that you won't be too anxious. Best wishes for you.
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I have been more active over the last week than I have in months because of the femur fracture. However, my ribs hurt. I know I had mets there when I was dx. I believe they were radiated in August. I'm wondering if it's old pain, something sinister -- new mets -- or I've overdone it. I know you're not doctors with X-ray vision, but I'm scared. I'm already sick and tired of being terrified of every ache and pain. I had a pet/ct 4 wks ago and was stable then. Ugh!!
Rachel
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Rachel - glad you're mobile again! I can't help with x-ray vision, but I can tell you that what you're going through isn't uncommon. Every ache, ever pain, every down/tired day...is it cancer? And the fear comes with it. It does get better with time; you'll start to figure out what's "normal" pain and what's "concerning" pain.
I think others will weigh in here, but from what I've read, if the pain is in the same place for more than 2 weeks, get it checked out. I have days when my ribs hurt beyond reason, and then they'll be fine for a while. Same with my hips, shoulders, arms, etc. Also, not sure what drug(s) you're on, but many of the AIs cause joint and bone pain. I've had two bone scans because of new pain and both showed NED. I'm having another one tomorrow at my request due to rib pain that persisted. However, it's mostly gone now...I asked for the scan about 6 weeks ago. But my spine still feels odd, so I'm going ahead with the scan.
Take deep breaths, consider yourself hugged, and take care of yourself.
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hugs to all suffering scanxiety! I'm with you, and my pet isn't for another 5 weeks.
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50sgirl, sorry to hear of all you're going through with dh and prayers that everything turns out to be okay.
Dee, not fair that you have to have such horrible side effects from the anastrazole because they changed brands. And then feeling yucky from the pamidronate as well. Sending you big hugs!
Bosco, glad to hear your platelets came back up with the new drug. Sending positive thoughts for your upcoming scans.
Rachel1, so happy to hear you're mobile again. Sorry about your rib pain but try not to worry. I continue to have lower back pain where my L5 was radiated but scans show healing.
Terre, sending all my positive mojo your way for good scan results and a long term relationship with NED!
Hugs to all, Annie
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Tonight I am suffering from pain in my shoulder. I was doing so well with little to no pain in the past 2 weeks. I don't know if weather can affect the pain level, but it was cold and overcast here in NYC. I'm hoping my meds are still working (I don't know if a little pain means they've stopped or maybe the pain comes and goes anyway) I noticed that heat helps, so I stay in front of my heater. I am on Ibrance and Femara.
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Thanks Annie!
Rushjackson - it could be Femara side effects. I have arthritis in my shoulders since being on Femara. Didn't have it for 2 years on Femara, now I do. And they ache more with cold. Fingers crossed that yours is "just" SEs.
Hugs to all,
Terre
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Thank you ladies for weighing in. It seems like so many of us are dealing with similar pans and scanxiety. I am praying tonight, again, for all of us. I don't know what I'd do without your support. Love, rachel
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Rod was put in on Friday am. I Still can't do much but lay here. Hopefully PT is going to help more today. Anyone that has a rod put in before rads were started let me know. It goes from my hip to the end of femur. I am so discouraged. Awful time with pain meds. Ultram is the only one I can tolerate with the anti nausea meds.
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Loves, prayers coming your way for a fast recovery. Prayers also coming to all suffering with pain and also scanxiety. I am thinking the change in weather has a lot to do with my increase in joint pain, I feel like I'm hobbling when I stand up to walk. This cancer business sucks
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loves- I'm so happy to see that you are well enough to post! Hang in there, it's up hill from here! Good luck with the pain meds, may they wipe out the slightest twinge! Sending peaceful thoughts and strength your way! Terre, by now the scan is over, and the waiting begins, In virtuality, I am pouring you a glass of wine and Making you some Kraft macaroni and cheese ( not too much milk). We will watch Monty Python reruns until the onc calls to tell us your still NED. Then we will open another bottle of wine..... I would if I could. Just know that I am sending you all positive energy! Love Chelle
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Happy Sunday all,
Weather changes is definitely a trigger for pain for me and I still have the odd pain where I had rads. Femara can also cause pain. Chronic pain with chronic scanxiety with chronic disease. Ugh! But I will reach my 2 year mark on the 26th of this month and can honestly say that I have a good QOL. The first 6 months were the hardest and that included surgery on femur. I guess this is a message of hope to newbies. I never, ever thought I would be so well 2 years down the line. Don't give up! And of course, these boards have been and continue to be a lifeline to me.
Bosco - good to hear about your platelets.
Terre - good luck with bone scan and I hope NED continues to be your faithful companion for years and years.
Loves - good to hear from you so soon after surgery. I'm sorry you're discouraged but that's normal right now. I sure remember feeling that way. I am one of who had rads post-surgery - about 1 month later. So happy for you that you found a pain med along with anti-nausea.
Annie - take care of that back!
Dee - I hope you enjoyed your show last night.
Prayers and good thoughts to all.
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Good morning all!
Enjoyed the show despite not feeling great. He was on stage for 2 hours straight, considering he is dealing with Parkinson's & prostate cancer, both of which he talked about quite a bit.
I can feel the veil of pamidronate starting to lift a bit, I don't understand why I can go for months with not much problem & then about every 6 months I have one that wallops me.
Bosco, glad to see your platelets coming up, good news. Annie, thanks so much for all your support. Terre, fingers crossed for your bone scan and I'm excited for you to move to your new home.
Loves, a big hug from me, I think it's great that you have come through surgery & posted here when you need support. Like Linda says, it's early days & can feel like you will never see the light of day.
Chelle, you're so funny, making everyone Mac & Cheese, bringing us wine! I'd like a bit of Brie & some crisp red grapes to go with my wine!
Rush, I find that my pain comes & goes, so maybe with the weather change you're feeling it more.
Linda, congrats on good QOL, 2 years down the road. Keep it up, I really want us to meet up next September!
Hello to all the others on the thread. Has anyone heard from Patty or Dune lately? I'm going to try to take it easy today, but the sun has come out, so I may have to just suck it up & get outside!
Hope everyone has a lovely Sunday, Cheers, Dee
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Hi Loves,
I had rads then rod -- rads may have contributed for need for rod in my case. I'm almost two months out hip to knee. It's just now starting to really improve -- my limp that is. Please take it easy. I'm still exhausted. I tire easily and really have to remember to pamper myself. A challenge with two teens, a husband, a dog, cats and two parakeets! The hospital gave me zofran so that I could take the stronger meds and not get sick.
Sending healing thoughts.
Rachel
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Linda, as a one week newbie it is encouraging to read your post. All of ya'll are an inspiration
Mary Anne
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I live in the desert, and on the few humid days we have, I've definitely noticed an increase in my pain. I don't know what the answer is for those of you who live in wetter climates, but if you can possibly plan a winter getaway to somewhere drier, it might be something to think about. Also I find that the supplement curcumin helps a lot with the arthritis pain from our meds and lack of estrogen. It takes a few days or even weeks to get enough into your system to make an impact, but once you do, you should notice an improvement that will be felt immediately if you stop taking it. At least that's been my experience, as well as others I've told about it.
Loves, so glad to see you posting. Have they had you up and walking yet? If not, hopefully they will today, although it's admittedly hard and can be discouraging the first day or two. But improvement should go very fast, so hang in there! As far as rads, when I had my rod & hip replacement, the rad onc called me several times (I'm thinking maybe 6 weeks post surgery, but not sure), insisting that rads were standard of care for my situation. But I actually had total pain relief from the surgery alone, and in the end turned down the rads, much to her annoyance (and a rather heated phone conversation). And so far, so good. You won't have pain relief for several weeks due to the trauma of surgery but w/out recalling your exact situation, if the rads you're asking about are for pain from the femur, you may want to see how you're feeling in 3 or 4 weeks.
Rachel, were you here when we talked about tumor flare many pages back? It's something very real -- pain caused by increased bc cell activity as they react to the meds that are killing them -- and I'm wondering if that's what's going on with your ribs, as opposed to any progression. Hope so!
Terre, I'm excited for your move, but worried about you or your DH by default overdoing it! Hope you can get some help with the packing and lifting.
Lynne, prayers that your DH's tests all come back negative. It's so hard and a bit scary to see our spouses or significant others facing serious health issues, and I think men seem to take these scares and concerns especially hard.
Good to see you, Hydranne, and especially to know about your NED status! YaY!!!
Hope everyone is enjoying their Sunday. Today is our 35th wedding anniversary. Hard to believe. Deanna
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Hello All, After reading all of the updates and struggles, and pain and anxiety, scans, newbies etc I think back a few pages when Chelle posted the quote. You are all indeed strong women and will persevere. You all have amazing strength and courage.
Hydranne, no need to stop posting.... We love hearing good news and want to hear more as you move forward.
Happy Anniversary Deanna! Hope you get to celebrate with something special. Terre, do you have results from your bone scan?
Lynne, When is your dh's CT scan? Dee, you made it to the concert! Great! Are you feeling any better today?
Of course, my best to all I'm missing. Follow up laser eye treatment tomorrow from cataract surgery. ( I was awake the whole time, because I metabolize Versid almost immediately.) That was bizarre I must say. I'm a puzzle to anesthesiologists!
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Happy Anniversary Deanna!
Chelle - you are so sweet! I'm amazingly zen about this scan. I leave in about an hour to drive up to Palmerston North, where my scan will be done. It's just over an hour's drive. I have to go early because we have a staff conference call at 10; my injection is at 11. Then the scan at 2. Wipes out the whole day. Oh well. The good news is that the company's bank has rooms you can use to do work. Free wifi, phones, etc. So I'll probably go there to work after the injection. It's super convenient, and since I'm beyond out of sick leave, helps me make up time and not have to take leave without pay.
Loves - you're in the worst of it right now. I have the rod from hip to knee. They went in through my butt cheek. That part hurt the worst. And they're not gentle when the pound the rod in, so you're gonna be sore for a while from that and the incisions. And you're going to need physical therapy to get the muscles that were cut working right again. So that's the bad news. The good news is that the pain I had pre-surgery went away almost instantly. Once the stitches (staples) were out, I had very little pain except from trying to move my leg and that was a rebuild the muscles thing. I had surgery first, then rads after my stitches were out. Only one to the hip/femur, and five to my spine. The reason for only one to the hip/femur was because I had so much pain relief from the surgery. I had the surgery in early Feb (got home on Valentine's Day), and finally came off cane/crutches in late May. I was on two crutches for about a month or six weeks, then down to one crutch. What I'd do is take both with me in the car, then try to use only one, but with the other one available for backup. I also had physical therapy once a week. Glad you're feeling well enough to post and reach out. It will get better from here!
As to the move, I found someone to help with yard work and possibly with cleaning. The yard work guy comes tomorrow to give us an estimate. Basically, whatever the estimate is - SOLD!
We also have movers coming on Monday, two weeks from today! These guys have moved us several times and they're great. They basically tell me to sit down and direct them. Sorry not to reply to everyone....hugs to all,
Terre
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Happy Anniversary Deanna!
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Happy Anniversary Deanna and good wishes Terre. Myra.
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