Bone Mets Thread
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Amy,
In the years before my dx, I had the flu several times and each case was worse than the last. Since dx, I have been faithful about getting a flu shot and haven't gotten the flu since. I'm going for a port flush this morning and hope they are doing flu shots today too. I get a bit of soreness at the injection site, but that's all..
Caryn
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I've rarely gotten flu shots in the past, and not for several years now, but I do plan to get one this year after I finish chemo next week. My onc thinks it would be a good idea. Enjoying the long, awesome, snow-free (so far) fall in Colorado!
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Bjsmiller and others living in Colorado, fall must be beautiful.
I got my flu shot 2 weeks ago, and have for many years now. I did get the flu about 5 years ago, but it was less severe because of the shot.
Anyone get bad leg and thigh cramps at night? I drink tons of water each day.....should probably have potassium checked? I'm getting more nerve zings down my legs too, but know that is from spinal compression.
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Im fine.loopy from drugs but fine thank God
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My husband was walking our dog and talked to a gal and he brought up his terrible leg cramps at night. She said you just need to rub under your nose and above the lip area. Hard to believe but he says he actually works!! He has had several leg cramps and each time it works.
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Auroaya, It is so good to hear from you so soon. I am happy that you are okay. I am sure the drugs making you feel loopy are also helping ease the pain. Hang in there. We are all right there with you.
Hugs, Lynne
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Auroaya - hooray! So glad you're ok. Loopy isn't always a bad thing.
Sue - will definitely try that! I get horrible cramps in the muscle that runs from my knee to my crotch on the inside of my thigh. It hit like mad the day after we did the botanic gardens and nature reserve. Agony! For calf cramps, walking it out and eating a banana helps, but not the thigh muscle cramps. And they're new since my dx, but I put it down to muscle issues from having the pin put in my femur.
I get a flu shot, mainly because I travel a lot on business between the north and south island. Believe it or not, there are different strains of flu that hit the two islands, so you can be fine on one island, travel to the other, and end up really sick. That said, I left mine too late this year and ended up with strep throat and tonsillitis as a follow on to the flu. The good news is that another big wave of flu hit here after I had my shot, and it went around our office, but I remained flu free. I don't get a reaction from it other than a bit of a sore arm for a day or two.
Glad you're feeling better today Dee. Nothing worse than itching and bitchin.
Sending hugs to all,
Terre
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So good to see you posting so soon, Aurorya! And, of course, I'm thrilled to know that everything went well!
For the leg cramps, in addition to being sure you're not dehydrated and have enough potassium, have you all tried the bar of soap between the sheets trick? You just tuck it in at the foot of your bed. Don't ask me how it works, but it always has for me, since I learned it somewhere here on BOC -- except for my current regimen -- Faslodex+Ibrance. There's something about one of those drugs that give me horrible leg cramps at night, in spite of eating a banana before bed, as I often do to hopefully ward off the problem.
Cristina, so sorry about the issues with your hubby. You've already gotten some great advice. I guess the only thing I can add is, don't be afraid to express how it makes you feel when he says something negative. He may not even be aware of it, and I think it's better to confront it than simmer and stew about it. He may not take it well at the moment (most men don't like to be criticized, no matter how carefully you express yourself), but I assure you he will think about it and hopefully will try to alter the behavior you've told him upsets you.
Re. the flu shot, I've always been very anti-vaccinations (and anti-meds, for that matter), but I am seriously considering getting both a flu shot and the pneumonia vaccine this year. I can't imagine getting the flu or pneumonia while on the Ibrance. Of course, if you're on Ibrance or any med that tanks your counts, be sure to do the shots when your counts are at their highest.
Gotta get back to prepping for tonight. I'm already totally wiped out, but taking lots of breaks as I go along.
Hello & hugs to all! Deanna
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Aurora, so happy you checked in and to hear that you're fine. Let the drugs work their magic and I'm praying you'll be pain free soon.
Deanna, please don't overdo it although I have a feeling you already have. I'm not one to talk, I never listen to my body when it says to slow down. I'm glad you're taking lots of breaks though. Enjoy your night.
Hugs to all, Annie
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Terre and everyone else,,
Thank you so much for your support - I feel that Wednesday's visit is going to be quite "interesting". As in, from the ancient Chinese curse "May you live in Interesting tImes"
I'll let you know what happens after the appt.
Sue.
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Port flushed, flu shot gotten! After too bouts of the flu years ago, I'm sold on it. As for vaccinations, CA recently disallowed parents, who wish to send their children to public or private schools, to use personal or religious beliefs as a reason not to be vaccinated. This takes effect in January 2016. The anti-vaccination movement was unable to get enough signatures to have a ballot measure to overturn it. As a public school teacher, I am very glad. We always had some students at my school who were not immunized and their parents said, "See, my child never got any of these diseases." Um, had they ever heard of herd immunity? This is a public health matter, not personal choice, if your child is in a school setting. If you do not wish to vaccinate your child, homeschooling is your choice. Health exemptions are still allowed.
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Lindalou, sure you can call me Deb! Lynn is my middle name.
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Auroaya, good for you! I meant to ask about you, glad you're back, loopy or not!
DH & I used to get miserable leg cramps, ours turned out to be from not enough salt in our diet. We don't eat any processed food & I rarely used to use any salt in cooking, so our bodies were salt deficient. Now we make sure we have a little sprinkle. Neither of us have had a leg cramp for 2 years now.
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Auroaya glad to hear from you so soon after the surgery and hope you keep enjoying the high of the meds and feel no pain.
Guys, it's just not good w me and DH but thanks for the sound advice. I do want to get away from DH and the kids for a day and overnight. I have an older friend Nancy who might let me stay over. Maybe a Friday or Saturday night. I really dislike my life right now and I can find no peace
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Geez Christina, I'm sorry to hear how sad and unhappy you are. I hope you can take a break and that it's enough to refresh your relationships
I'll say a prayer
Amy
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Christina so sorry. I am going to list my favorite mini vacations for when I cant get away for real and hope they could be helpful to you or others. Heck to inspire me to take care. I do love kiwicats pairing of mac n cheese and wine in pjs
1. Take a day off work when kids are in. school and watch competitive cooking on netflicks. The. british baking show is my favorite.
2. Go for long walk or hike alone or with friends.
3. Dive into long craft project.
4. A long hot bubble bath(no interuptions allowed)
5. Learn a new complicated recipe that keeps me in the kitchen all day.
6. Naps I love naps.
I know these are just band aids until some real problem solving can take place but sometimes distance gives us the perspective we need to solve problems.
hugs to you and all
mary
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hi everyone, I got Quadramet injection last Thursday. Dr Brant, not my RO, but colleague of his. He says he has seen good results with this treatment, but MO rule treatments & they r not sure about Quadramet. So far no ill feelings. Top of my head hurt worse, was told I may feel flare, but so far very minor.
I am staying w/my son for few days to have private bathroom, radiation leaves via kidneys, told to flush twice no share bathroom if possible.next week will get CBC done to check counts. MO wants me to start aromison next week too. She wanted me to start affinitor & not do Quadramet, but I vetoed that. Any one been on affinitor? Please share experience I have heard negative things.
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Christina, I really hurt for you. Being miserable in a marriage is a horrible feeling! I have been there in the past. One of my greatest escapes was a good book. I didn't have any money to physically escape, so I would bury my head in a novel. Another way of escaping for a short time, was to tear a room apart, rearrange the furniture and clean the heck out of it. I also felt somewhat accomplished afterwards. Also, just spending a little time outside can be healing. Grasp on to all things that bring you joy. The laugh of your children, birdsong, good food. Life with stage IV and a rocky marriage must be horrible at best. But there is always something to smile about. We all love you. Chell
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Cristina, I really don't have much to add but agree with a good book and a Starbucks. I also walk or ride my bike. Stage iv is tough. Hope you find the support you need. XO
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Sarah there are diffrent types. In the beginning of this yr my daughter had a bone biopsy(long overdue) and it showed a change from HEr2- to Her2+ so she was able to take tx directed to that. Well, that hasn't worked out very well, she had much aggressive progression throughout the yr, so now new Onco ordered a blood biopsy.Still waiting for the results. But sometimes they could get better and fresh info on what is making your cancer progress.Just a thought. If you could do it, it could be very helpful.
Auroaya so happy that you are over the fence, best wishes for a quick recovery.
Deanna I heard about the soap business, I read once lavender?
Dee hope you go through the rads with ease.
lynne love your funny remarks.
Suems a lot of these people are jerks. It would be really great if you could get hold of Isaacs and even just work with him. Believe me we went through that, my daughter was too faithful to one Onco, I feel a little guilty that I did not push her sooner, I feel that we did go through the right treatment protocols so that makes be more in peace, there is a certain order you gotta go through, but then there were too many shenanigans and too many politics involved. I do lay in bed at night and keep thinking of what I really wanna tell her, because I was able to get the reports before she called or told us to come in, and many times she only acted on the results after I called her about it, it is very troublesome to say the least. These people are literally playing with people lives. And the second opinion, from a different large Cancer Center in NY was totally NOT independent, scared to step on our original Onco's toes. Very disappointing. I would like to know what you guys think, if I should write an honest letter, telling them about their misconduct, their lack of sympathy, empathy, information etc....or just write the letter and not send it???
I totally totally understand your well directed anger. The constant patronizing. Like i mentioned earlier i do read a lot of medical books, and the last one was: When doctors become patients, yep it's exactly what you are thinking. They cannot believe of what "patients" have to put up with.
Lynwood so nice to see you are so loved.
Amy my daughter and her family they all take now the flu shot. But I understand some ppl are afraid to do so. I am, my hubby took it because he has high risk issues, and he gets sick like a dog. Not so simple.
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To all my supporting MBC sisters on this discussion board: I'm baaaaack. I haven't posted for a month. Overwhelmed by work, family responsibilities, and this ugly MBC bone metz. Reading your posts is such a blessing for me. Knowing I'm not alone . Please know,that each and everyone of you are in my daily thoughts and prayers wishing peace and light into your life. I try to catch up reading your posts as much as possible. I'm trying to study for a new certification as a clinical densitometrist (able to read and interpret DXA scans) with brain fog, so I'm sure you all understand my disappearance.
As a nurse practitioner I am not an oncology specialists so, I am reading numerous research studies on bone mets desperately trying to understand what is happening to me. I have come to a conclusion: bone mets are the crazy mets! Bone mets are so individualized to the patient that it's hard to compare anything from patient to patient except that change in presentation of the disease and treatment is the norm. With that being said, with my bone mets that are lytic/sclerotic/blastic (all at the same time) and everywhere throughout my osseous skeleton, different types of scans are used with me. They compare nuclear bone scans and CT scans every 3 months (clinical trial requires it). PET scans aren't good for me because my mets aren't PET avid. ( the mets don't "uptake" the glucose based contrast. ) I've had two PETs since diagnosis).
I'm having rads starting 10/19 for pain management & fracture prevention. They used an MRI without contrast to see where the rads were most needed! When I had new neuropathic symptoms in my upper back they used an MRI with contrast to determine that my mets weren't impinging on the spinal cord. There were a # of posts discussing what kind of scans were needed to identify and/or track bone met progression and I believe it's all dependent on you and your individual disease presentation! And the protocols at the institution where you are treated. All in the US follow NCCN guidelines for treatment of MBC.
I am being treated at an NCCN comprehensive cancer center, actually the first in the country. My case is discussed monthly by the entire MBC team not only my team. I am blessed to be able to receive this treatment. I am in the Entinostat, AI (mine is exemastane - Aromasin) Xgeva double blinded randomized trial. I was first diagnosed in 2006 with stage Ib, lobular in situ and invasive, ductal in situ and invasive, and tubular-lobular. - treatment = bilateral mastectomy and reconstruction and arimidex.MBC diagnosed 9/2014 as a fluke result of CT scan of abdomen for a sick gallbladder. I have been in the trial for one year with no appreciable progression, at least to my visceral organs. Because of the extent of the bone mets it is hard to tell if there is progression in my skeleton.
There r days when I'm in terrible pain esp my coccyx & entire sacrum (literally a pain in the ass). There are days when I'm in no pain. There are days I'm sure my mets have spread because my liver hurts or my skull can't be touched. I've had transfusions due to severe anemia. Then for some unknown reason my platelets tank! It's always something as Gilda Radner so aptly stated. I never know what to expect when I open my eyes after sleeping but, I know that can be normal because my mets sisters on this board reassured me that it can happen like that. I thought it was only me and I was crazy or it was all in my head. YOU all see me through those doubtful, dark times.
There are days I want to cry at the drop of a hat because I know so many of my MBC sisters and brothers are in pain and dying. I cry because my future is so uncertain and I have so much more I want to accomplish on this journey. YOU all lift me up.
Bone mets are the crazy mets, and no two cases are completely alike. But, I have support, acceptance, and caring here on this discussion board. Thank you all for being here for me.
Also, check out METAvivor.org. It has helped me, too. I'm now a militant METAvivor.
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Hi all,
Aurora - I was so happy to hear from you so soon after surgery! Thank you. I hope that each new day brings less pain and healing for your recovery.
Lindalou - Congrats on that presentation you made! I would be so nervous. I hope your friend is doing better from her lung surgery.
Sue2009 - Praying Quadramet does its job! I have no experience with Afinitor (yet), but there a couple of threads on that med. I listened to the webinar (posted by Besbird) on Friday from lbbc.org and the Onco giving the presentation talked about Afinitor; Oncs now have more experience with it and can "play with the schedule and dosing" to balance SEs.
Lynwood - nice pic - nice to know we are appreciated from our colleagues.
Rnsparki - good to see you again. Your entire medical team seems to be on top of things! and so are you. That's an interesting clinical trial and one year stable is great. Praying it continues on and on. Your're so right in saying bone mets are the crazy mets! One thing I will never understand is why those crazy buggers don't cause pain at times and then decide to make our life miserable - it's the pain roller coaster!
Chelle - you are right - always something to smile about.
Amy - I guess you don't have your MRI results yet!
Thinking and praying for those with personal issues on top of Stage 4, changing Oncs or second opinions. We certainly learn along this journey to keep abreast of all our results/reports and be our own advocates. We are so better equipped to do so thanks to these boards.
Hugs all around
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Linda,
I spent the long weekend in Northern Minnesota enjoying the beautiful fall days and coolish nights with my daughter, her husband and 4 grandchildren ages 6 and younger. It was exhausting but oh so fun. We enjoyed a hayride, bonfires, lunch and the kids were able to go on horseback rides thanks to three lovely teenage girls who live in the area. I think they enjoyed "showing off" their horses then were kind enough to give the kids rides.
So no, results are suppose to be mailed but I haven't been home to get the mail. Hope some good news tomorrow. Thanks for remembering!
Amy
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amyq I get a flu shot every year per doctor's advice.
Aurorya, good to hear your surgery went well.
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I'm sort of a chicken when it comes to getting a flu shot - it's been recommended for a couple of years, since cancer dx, but I haven't done it. I think I will this year. Thanks for your feedback. I hope you all had a wonderful weekend.
Amy
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Amy,
I hate shots too. You'd think that after all we've been through a flu shot would be a snap 😬
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Caryn, it's not the shot so much as the sore arm and mild flu-like symptoms I worry about and never having time to contend with. But this is irrational, I know, because if I were to actually get the flu, I'm sure it would be at a most inconvenient time. But I don't like shots much either.
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Hello Everyone,
I just got diagnosed with metastatic breast cancer that is bone mets. I'm scared to death. I go up and down between being hopeful and thinking my life is over. My doctor has a treatment plan for me. I'm going to be on Ibrance, Aromasin and Zometra. I'm really hoping these combos work and shrink my tumors. I've got really good support from family and friends. Any encouraging words would be greatly appreciated. Thank you.
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Amy,
Sitting here with sore arm right now
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Do you get flu-like symptoms too or just the sore arm?
Rushjackson, this is the worst time for you right now...newly diagnosed and waiting for treatment to start. I remember it well. I'm sorry you have to join us here but you will find this is a great group of people all dealing with bone mets. You will feel more positive once you begin treatment and after your first scan showing it's working. Not to minimize what you're dealing with, but I'm so grateful to have mets in my bones only. Lots of us live very long and productive lives even with bone mets. We share each others joy and comfort each other when we receive bad news. Please read and inform yourself as best as you can. Ask questions here and and your oncologists appointments. Read these forums and especially this one to learn what to expect, but know that everyone responds differently and some have easier times than others. Good luck to you and please check in often.
Amy
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