Bone Mets Thread
Comments
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Annie - It's a Siberian cold here. Had a snow storm yesterday - my exercise today was shoveling! But yes, I have been taking daily nice walks (having muscle pain in legs and butt from uphill/downhill - the kind of pain that feels good!) I realize I don't have the stamina I used to have but am quite pleased with what I can do. It also helps with the Femara stiffness.
How are you feeling?
Linda
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Linda, that's how my Dad used to describe our cold winters, he would say it was like Siberia and that's exactly the kind of winter we are having. We also had a snow storm yesterday along with freezing rain first. We can't find anywhere to put the snow anymore and we're suppose to get another major snowfall Wednesday through Thursday. I have a CT scan Wednesday and getting a little anxious. I hate all these scans! I have been quite active lately, although I too am aware I do not have the stamina I used to but making the best of it. Looking forward to some nicer weather so I can walk a little more. Wow you shoveled the snow, I don't think I could or should do that because of the met in my humerus, afraid my arm could break. Luckily our dear neighbor has helped us quite a bit.
Hugs, Annie
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I'll be thinking of you Dee. Enjoy your time away and visiting with your friends.
Congratulations Sharon and Rebecca!
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Hi Ladies, Need some info type help here...please? I have been on Herceptin and Faslodex for a yr since my dx of MBC stage !Vmets to lung and ribs. All has been huming along with virtually no s/e until Xgeva was added 10 weeks ago. Due for my 3rd Xgeva next week. Last Thurs was seen in ED with severe sternal and some back rib pain....shortness of breath and very lethargic. Docs went the way of a pulmonary embolism and after a 12 lead EKG and cardiac labs.... ordered a CT angiographic test of my lungs. Test showed no pulmonary embolism or effusions of lung or heart....yay!
Today I had another such bout with the same sx. I managed to get a grip on the back pain etc with xstrength Tylenol and moist heat and rest. My question: Has anyone who is taking Xgeva experienced similar symptoms? I know that Xgeva has a variety of similar sx until the drug is in the tx schedule longer. I thought that I would run it by any Xgevers here for your input. So many here are suffering through much pain until a good system of pain management is achieved and to you my sincere hope that success wins for you soon.
Any input re the Xgeva connection will be greatly appreciated. Hugs, Peggy
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Dlb: Very nice picture...isn't it great to connect again with a good friend. Thank goodness for bco and fb. With all the Siberian weather we have been having...not much outdoor stuff...just looking for any sign of an impending spring.....a lost robin....a gutsy rabbit. We live in Amish country....gorgeous farms and about a mile away a liberal arts college. I am going to check from our sunroom again for that gutsy rabbit. All the best. Peggy
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I was dx'do with Mets after 16 years. Was quite a shock, but my family has been very supportive.
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Hi!
Checking in and wondering if people have back problems once CA is receding. I have TM of 51 which thrills me til my face gets a goofy smile but I have a honeycombed spine, lost one and a half inches and a herniated thoracic disc. I am so grateful that these things won't kill me but looking around for peer support. Anyone else?
Love to you all!
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I met with a PS yesterday to discuss implant removal. As I was discussing my situation he said "bone metastasis are interesting and traumatizing to patients with them" but he went on to say people with bone mets only, can live a good long life for an additional 30 years. Because there's no other form of staging for people with bone mets, they're lumped in with mets to the soft tissue organs. Stage IV ends up sounding so hopeless but it isn't and it doesn't have to be.
I never thought of bone mets like this before and his comments gave me hope for a longer brighter future. I'm sharing this in hopes to help others who may have felt as I did, however also recognize his views may be too simplified...but in either case I want to find the glass half full without being unrealistic. Thoughts?
Amy
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Hi Amy, I think if you can be a glass half full person you should continue to do so, I mean why waste days that you can be enjoying, correct? (It's not that easy for me but I wish it was.) Your PS is correct in telling you that but you know that many things can happen but like I said I think you are better off being positive.
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Peggy -- I started Xgeva in January and was very tired for about 5 days. Then I was fine. I saw my MO last Friday for round 2 and asked him if it helped with arthritis pain because my overall level of aches and pains is down considerably. He was happy to hear it and I had the second injection without any fatigue this time. I have heard others say that the first couple of injections can be problematic with SE's, but then it settles down. I hope that's the case with you.
MammaRay -- I was dx'd after 9 years cancer free and no longer in treatment. It was a total shock, and when the MO said incurable, I heard "I'm going to die soon." Everyone was shocked, but very supportive. As the weeks have gone by and I've learned more about bone mets from all the smart women here and from my MO, and I realize that I'm not dying anytime soon, at least not from this, and I have been able to offer that optimism and positive attitude to my friends and family. It allows all of us to live more normally and not feel totally focused on the dx.
Thanks for all the good wishes you sent to is on our wedding yesterday. Rebecca and I had a great day. The Courthouse ceremony was lovely with a very nice woman officiating and 7 close friends attending. We went out afterwards for a little celebration. We ended the day by going to the casino (we like to play the slots) and we both won a good amount of money. So it was our lucky day in many ways! We're happy to be married after almost 17 years together, and looking forward to many more.
Love and hugs to all, Sharon
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Thank you, Amy, for sharing that! It's so hopeful!!! I think one of the keys to longevity is very much getting the right tx, and perhaps not getting over treated. One thing that really concerns me is the frequency with which most oncs want to scan us. I understand that they're necessary, but sometimes I think our situations evoke a feeling that frequent scanning really doesn't matter as much as it would given other circumstances. And I recall someone above (sorry, not sure who without trying to flip back a few pages) shared a comment made by her onc about moving onto chemo when she's on her first A/I. Thank goodness for BCO, where we can share our experiences and knowledge, so that she already knew this probably isn't her next best step! Our minds are so powerful, and I'm extremely grateful for comments like the one your PS made, Amy!
Congratulations, Sharon! We'd love to see a photo if you feel like sharing one! Deanna
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Kudos to your ps for his positive outlook, but I guess I would temper it with a bit of reality. Bone metsmay not stay confined to the bone. Mets often move on to soft tissue. I personally am hoping for at least 30 years, but the odds are against me and sadly, all of us. Still, I remain optimistic, but pragmatic.
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Congratulations Sharon!
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MammaRay - I had been (supposedly) cancer free for nearly 7 years (since my Stage I dx) and had finished my five years of tamoxifin. It was a shock. My husband was at the doctor's office with me so he knew right away. When I told coworkers and friends, I tended to be upbeat and positive about it (chronic manageable condition) but was a bit mroe blunt with really close friends and my DH's family. It's a really individual thing. I've found there are benefits to letting people know, but also drawbacks, so it basically comes down to what you feel you can deal with. Just be prepared that people say really stupid things.
Amy - my MO says that he sees with the "state" of my cancer (bones only, controlled for two years on Femara, length of time since diagnosis, etc.) that he thinks I "easily have another 10 to 15 years, and that's assuming the treatments stay the same as they are today." He's quite optimistic that there will be something close to a cure within the next five years - at least something that truly makes this a long-term chronic manageable disease. So I think optimism is a good thing. I read somewhere that you need to be PRO - pragmatic, realistic, and optimistic. I think that's pretty good advice.
Sharon - Congratulations! And a win on the slots to finish up the day. Fantastic!
My alarm went off at 5:30 and I whacked the wrong button and woke up again at 7. Was a bit late for work! Oh well. Really could have stayed in bed for another hour or two as well. But it's a bright sunny day here and I have lots of work to get done, so it's all good.
Hugs to all,
Terre
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While what you are saying about bone Mets may be very true, my onc nurse also confirmed this yesterday, please let us not forget our sisters with addl mets who also need good words of encouragement. We are all in this together, praying for a cure, let's not make it a competition.
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Agreed Myra. There are people with liver, brain, and other mets who are living good lives, and are many years out from diagnosis. So definitely want a cure! I met a woman who was diagnosed with Stage IV with bone, liver, brain, and kidney mets six years before I met her. We met at the airport when we were both flying to Auckland for business meetings - she's still working and she looked fantastic. She's my role model.
Hugs to all,
Terre
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PRO!! Terre, I love that. I am so very, very PRO :
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Hello to all,
Peg haven't seen you on here in a while. Sorry to hear of your pain. I'm not using Xgeva but spoke with someone I met at the cancer centre who had a similar experience in the beginning. She is now tolerating it very well. Hoping you notice an improvement soon.
Terre, I too loved the PRO, great way of looking at it. The woman you met would be a great role model, how awesome she is doing so well. That gives us all hope, thanks for sharing that!
MammaRay, I was still receiving treatment with tamoxifen when I was diagnosed stage IV, so for me it failed to work. I just came right out and told my family and close friends, all who have been extremely supportive.
I have my CT scan in the morning. Feeling a little anxious and I hate all these scans. I agree with you Deanna about the frequency and I worry about all the radiation.
Hugs to all, Annie
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Thanks Annie and Sharon and the other Xgevers who hopped on to reassure that the s/e ...fatigue etc seem to lessen after the early txs. That is sooo helpful..reassuring. Annie..good luck with your Pet scan...hoping for some really good results. Hugs, Peg.
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On the Xgeva question. I've been on it for about 18 months now but recently went back to every 4 weeks. I've been in a lot of pain for past few days. Got Xgeva on Thirsday, so thinking it's that. Not sure why things have changed this time.
On Ibrance, my MO is working on insurance approval. Should know more soon
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Romansma -- good luck with the insurance company approving Ibrance for you. It shouldn't be up to them, but that's the unfortunate reality. I hope they give approval without any hassle. Is it even available yet?? I hope they get it to you soon.
Sharon
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Good luck with the insurance co, Romansma.
Valerie - I meant to respond your question earlier. I have mets in my spine and one rib. And some days it aches like mad (today is one of those days). Other days, it's fine. Mine's been fine for quite a while; don't know why I'm sore today.
Hugs to all,
Terre
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MammaRay, I chose to only confide in close relatives when I was first diagnosed, which was stage iv from the start. Actually, I told my husband and son after hearing it from the onc, and my husband made a few phone calls to relatives who then relayed the info to a few more. I did not tell friends and coworkers of the stage iv. They assumed I was treated for bc and put it behind me.
Recently, I felt less a need to be private about the stage iv dx, and have let others know. Their reactions are not very dramatic like it was when i first told relatives back in 2011. People see me now and I look healthy and live seemingly normal, so they react like its sort of no big deal. People want to see a very miserable , sickly looking cancer patient, I think, to reinforce their image of what they feel this disease should look like. Some people ask, "aren't you on chemo?" as if I'm not doing enough to fight bc by just taking a daily pill, kind of like they think I'm careening out of control by not getting proper medical treatment. And they have no idea that four years ago, no one knew what my future held or if I would still be here today. Ah, well.
Your health is a private matter. You can keep your diagnosis to yourself and a few close relatives and friends or reveal it to all. It's your own personal choice
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Myra your post has bothered me since I read it last night. No this isn't a competition but if you will review, my post was a positive, encouraging one posted in a Bone Mets Thread and you've made me feel like a heel for celebrating a positive.
Amy
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Amy, My post was never meant to bother you. I am very sorry you took it that way, it was merely meant to remind that some people on this thread have other mets along with bone and they need encouragement and love too.
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Whether we have bone mets only or mets to multiple areas, we all have metastatic bc. Amy, I applaud your ps once again for his positive attitude and I know how wonderful,it must have felt to hear this. I am also very glad you posted it as it gives us all hope. And yes, we are keenly aware that others might not be in this situation, but I feel that we don't have to temper every hopeful comment with a specific acknowledgement of other circumstances. Competition? No clue as to how Amy's op would have suggested any such thing
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I love you all, and don't you forget that! There's no competition here. There is nothing here but loving support, and we never forget any one of our sisters, regardless of stage or metastases or relative health or illness.
Have any of you had any experience with numb jaw syndrome? As I recall, when I experienced the numb jaw when I first suspected the cancer had metastasized, no one had heard of it. Anyway, it disappeared after I started the anastrazole. But guess what? It came back last night, but this time, it is not just numb (literally as if I had been to the dentist), but it is also painful. I did not sleep. Fortunately, I do just so happen to have a dental cleaning appointment tomorrow. I have to tell them about the xgeva anyway. Dang, but it hurts so bad, in the bone. Numb on the surface. Pain in the bone. I tried to find out online how to relieve the pain: nothing. I'm wondering if this is the cancer getting worse, which I tend to lean toward since the TM rose, or could it be healing?
Sorry you are aching today Terre. I'm going to fly right on down there to Otaki (I believe you are somewhere around there) and take you out for a chai or latte or ice cream. Admittedly I am going to have to do this in my head, but I'm doing it anyway.
Best of luck to you Hope! My friend since childhood worked as a medical coder and so became very comfortable dealing with doctors. She had to jump through all sorts of hoops to get a bariatric surgery covered by insurance. Among other things, she got letters from her doctors; so definitely enlist your doctors' support.
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Hmmm sounds like TMJ, maybe? I'm interested in hearing what your dentist thinks. He'll probably do xrays. good luck
Amy
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Momonana6-- Peggy, just wondering how you're doing with the Xgeva. I just remembered that my MO emphasized that while I'm getting those injections, I should be taking 1000-1500mg of calcium supplements and at least 2000 units of vitamin D every day. I also read some comments here last month sometime that taking those was important to lessening SE's from the injection. Sorry I didn't remember that sooner, but it might help. I hope you're doing better with it.
Sharon
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Caryn, you always have a way with words. Thanks!
Amy
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