Bone Mets Thread
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Yes, I think being hungry is a good sign, Patty.
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Shelley. Thanks for that info👍
Patty being hungry is a great sign
Bab
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Patty having an appetite is a great sign , your body is telling you it needs ammo to fight
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Patty--eat whatever you want, and as much as you want. High protein is best for nutrition & healing, while normal blood sugar is best for after an infection.
Wendy3-I'm assuming you're guessing you're on the placebo? The nurse shouldn't be speculating if you are in a blind study. Whatever you are getting, I hope it knocks down the cancer.
Often you get Denosumab shots, and they are what causes what I think is bone mets pain, but it is bone pain.
Cheers sisters!
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I have had a hard weekend! I found out Friday my brother has one lymph node that's enlarged. He has stage four head and neck cancer but he's been in remission for three years . Here's my problem. I have been his primary care giver since he had to have surgery three years ago and lost half of his jaw. I told him when my cancer came back that he would have to start taking a little responsibility for his own health, because I had to have time now to take care of me. Still he calls me to have me do everything for him call his doctors office to check appointments to insurance and everything else. I feel like I am under enough stress with my own cancer that I just really need him to step up and take care of his stuff. Please don't getme wrong I love my brother very much. But he has had someone take care of him his whole life. He is a recovering alcoholic, and my mother took care of him up until the time she died of cancer. It's not that he's not capable of taking care of himself it's that he chooses not to. Sorry to lay all of this on you ladies! I'm just very frustrated and I don't know what I'm gonna do. If his cancer is back his only recourse now is chemo. And he doctors two hours away and I've been running him back-and-forth to his doctor now for three years. I've put 70,000 miles on my car, and spent literally thousands on gas and his care. I just don't have it in me to do it anymore. I took care of my mother for two years at the end of her life she had stage four ovarian cancer, while at the same time caring for my husband who had had two massive heart attacks and was very ill with Crohn's disease. A week after my husband passed away I was in Wichita with my brother finding out he had stage four head and neck cancer. I never even had time really to grieve for my husband, because within two months my brother had had surgery and lost half of his jaw, and needed almost daily care! Sorry ladies I know this is a lot, but I just felt like I needed to get it out! I've often wondered if the stress of all of this is what caused my cancer to come back.
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Wendy - I am on ibrance with absolutely no effect on my WBC or neutrophils. My doc says she only sees that about half the time.
Gracie - My dad was living next door to me when I was diagnosed with cancer. During the first two months of my diagnosis, he ended up in the emergency room twice and was in and out of hospitals and special facilities. It's a long story, but although he has prostate cancer, most of the drama was the result of his own decisions. He is also an alcoholic, which is one of the expressions of a narcissistic personality. I literally packed up my family, sold my house, moved and didn't tell him where (even though it is in the same town) because there was no other way to get him to find a different support group. Telling him I had cancer I could not care for him did not work, because he really can't grasp a universe that doesn't revolve around him. He kept calling, making the same bad decisions that led to drama. After a few weeks of not answering my phone and just generally being gone, he figured out a great new solution for himself. He is doing very well. He is very smart and roped a whole new group of people into his dramas. I called him recently. We had a nice talk. Like nothing happened. Narcissists are easy that way. And I do love my dad.
Talking to your brother is not going to do it. It's only actions that work. Try thinking like a narcissist yourself for even just a few weeks - only you and your health matter. Your brother will adjust.
>Z<
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Patty I love your spirit and your appetite. I wish you get to be home with your family soon.
Gracie, I have no wisdom just sending positive thoughts and hugs.
Wendy I have heard many good things about faslodex.(There is a pharma produced YouTube video that shows how it works.)Here is hoping that you are getting just the right meds for you.
I start rads to skull next week and have a MO appointment to talk about possible treatment change.
Peace to all
Mary
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Thank you Zarovka! I feel like such a bitch (please excuse the language), even thinking about not taking care of him anymore, and concentrating on me. But I know if I don't take care of me, no one else will, there isn't anyone else left. I took care of everybody else, now Mom's gone, my husband is gone, his dad is gone, and my brother also has cancer, and now that I'm sick, there's no body to take care of me, but me. Kind of sucks, but that's life, I guess! I am just totally unsure how to go about all of it. Am really, really praying that the lymph node he has is nothing. I guess I'm trying to avoid all the ugliness that I know might be coming. Thanks for explaning your situation, and being so understanding about it. It's good to know I'm not the only one dealing with this kind of mess, although I wouldn't wish it on anyone else. Big hugs to you!!!
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Sending you a loving hug, Gracie, and yes, stress can exacerbate an undetected cancer. It can lead to heart attacks and other health issues as well. For years you've been THE caregiver in your family, so of course it's affected your own health and well being. You'd be super human if it didn't.
I agree with Zarovka...the only way you're going to get your brother to take care of himself is simply to walk away. If he doesn't have a car, there are organizations that can help him catch a ride to his dr appts. The American Cancer Society has a program that takes cancer patients to appointments. If he's not computer literate enough to find these organizations, he can look them up in the phone book. I'd be really upset about this too, if I were you. For criminy sakes...is he a double-arm amputee? Is he so mentally incapacitated that he can't use his own hands to pick up the gol durn phone and call the dr himself?
You have to take time for yourself. If you don't you could seriously compromise your own healing process. If you keep pushing yourself too hard by taking care of both of you, you could expire before he does!!! Please forgive me...I'm not trying to be heavy handed, but he's got to start doing these things for himself. You have to be totally honest with him and NOT let him guilt trip you into being his primary caregiver any more. You may have to do what Zarovka did and just ignore his phone calls.
You didn't mention if he's spiritual, but most mainline churches (and temples) have deacons or people who fulfill that purpose, and these people can make arrangements to drive people to appointments. My husband and I used to be deacons at our former church, and during our off-work hours, we'd drive people who didn't have anybody else to their appointments. So it can be done. You just have to lay the law down.
Best of luck,
Lita
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Mary. Best of luck to you for rad to skull next week. I guess you will be making one of those Spider-Man looking helmet thingys. What part of skull are they rad ?
Gracie. Looks like you've already gotten some great advice. I agree. Stress does some really weird and harmful things to our bodies. You've already done way above and beyond your part. Feel no regret or shame. It's time to focus on YOU. You are important. You deserve the help to be reciprocated 100 times over but I wouldn't hold my breath for that. You must truly be a saint for being able to deal with all this up to now. Don't just step back. Turn , run. Your body needs your focus on YOU. Feel free to blow off steam here anytime.
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I went to see my MO today for results of bone and CT scans. Progression is confirmed in bones and there is a new fracture in the ilio pubic region which partly explains the increased pain. We discussed different tx options. First choice would be the Ibrance trial, second is the Sandpiper trial and MO will also look at other clinical trials. If a clinical trial can't take me on, then it will be Faslodex alone. I was very fortunate to have such a good ride on Femara. Now it's time to move on, it will be 3 years in November since dx.
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lindaE. Sorry for the progression. 3 years is a good long ride. Hoping the next tx fives you even longer time hugs
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Once again, I managed to delete this thread from my favorites while I was away (in Texas -- photo w/one of my SIL's & niece) for a week and only doing quick peeks at my phone. I was beginning to wonder why I hadn't seen any recent updates, and just figured out what I'd done.
Babs, I am so sorry about your progression. I can't recall if you'd been having pain or other issues. If not, this must have come as such a shock to you after such great initial response to Xeloda -- something I've frequently mentioned to other women switching from Ibrance to Xeloda. I'm so sorry.
Patty, are you in the hospital again??? I'm not following your most recent comments and haven't had time to read the 4+ pages I've missed. The last I recall, you were doing great! What happened???
Welcome to the new "faces." I promise to catch up and address you all individually soon. In the meantime, I'm glad you've found us.
My most recent news is a significant drop in TMs (albeit horribly low WBCs & RBCs) from labs done on Friday. The strange/amusing/crazy thing is, I was away all last week and ate horribly and drank wine -- neither of which I do normally -- and my TMs took a nosedive. Go figure.
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Deanna. Great news in tm nose dive !!!! Really glad you got away for a visit. Was wondering where you were. I have been doing AWESOME. Ended up in hosputal for same thing : uncontrollable vomiting, diahrea , fever. Apparently had uti which went septic. Spent like 12 hours in er waiting on bed in icu. They finally got me stabile enough for a reg room before icu bed opened. Just crazy. I layed down wed for a nap feeling great and woke up horrible. Didn't realize how serious it was. No notice. But anyway in the mend and looking forward to going home and ENJOYINg life again. Btw. Nice pic. Looking good !
Hugs
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Linda - Choosing between Sandpiper (Taselisib, a PI3K inhibitor) and an Ibrance (palbociclib, kinase inhibitor) will be interesting. Ibrance is efficacy and outcomes are a little better understood, so it is a less risky choice. Taslisib however, has been the most successful of the PI3K inhibitors. Some argue that you need to test positive for the PI3K mutation for Taselisib to be effective, but it is not completely clear that is true.
I'll be interested in your oncologist's thought process. You may want to do your own research.
Please join us on the Ibrance channel to learn more about that path. I am on Ibrance and letrozol. I am pretty sure most of the SE's I experience are the letrozol.
The Sandpiper Trial has it's own thread as well. I am sure they will take your questions.
You have some pretty good options with these trials.
>Z<
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Oh, Patty, I'm glad you're doing better, but just so sorry you had to go through that horrible vomiting and everything else again. Plus, each time that happens, I think it makes us not trust our own bodies and steals a little bit of the joy we have when we're feeling good -- just b'cuz the fear of what can happen starts lurking again. But at least by now you know it's not the mbc itself that has you feeling so lousy, but rather an infection, and that you can and do feel good when it's gone! Big hugs to you, and I hope you get home soon -- but not too soon. I want you to be completely over any possibility of it hitting you again!
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Hello Patty, I very rarely post but do read almost every day. A friend of mine who is a doctor gave me a book called "How Not To Die" by Michael Greger, MD founder of nutritionfacts.org. There is a chapter on Breast Cancer but the one that caught my attention was the one on avoiding chicken(not sure if you eat chicken) to avoid UTI's. In short, researchers from McGill University were able to capture UTI-causing E coli at the slaughter plants and eventually to urinary specimens obtained from infected women - direct proof that bladder infections can be zoonosis (an animal to human disease) Many of the strains of E.coli in chicken that cause UTI's are now resistant to some of our most powerful antibiotics. He suggests to not even handle it or prepare it. I have given you a readers digest version of what he wrote but if you feel more information would be helpful, please do message me.
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Linda & Babbs-- my thoughts are with you with this progression. I have scans next month, and dread the results every time. Does it ever get easier? Hold out for a treatment plan you can have a good QOL with.
Gracie-- I'm not sure how you've withstood all the stress so far, but you crying out for a listening ear and help on this board has been good practice for you to call in the real experts. Perhaps as your final act of helping your brother, you can link him to resource that will make him independent with professional caregivers/transportation. That way, you know he'll get some care, and someone besides yourself will be looking in on him. Good luck with that, but you need this time for you.
Celebrating the roller coaster that is our lives!
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Susan Ann: Does that include ALL chicken? Even organic, free range, hormone/antibiotic free?
I hardly ever eat beef or pork, so my primary protein sources are eggs (which are UNBORN chickens), chicken and dairy.
I've been eating chicken all my life. I'm almost 58, and I've only had three bladder infections in my life, knock on wood.
Thanks, Lita
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Lita,
I've read that chicken-UTI link info too. I'm a vegetarian, but I'm also prone to UTIs. I think a lot of it depends on our own bodies. I quit eating meat about 16 years ago because 1.) I realized I really don't like it and 2.) most livestock are raised in terrible conditions and fed unhealthy food. It's not the meat we grew up eating at all.
I have no trouble getting enough protein from beans and nuts, etc. For the most part, I am not vegan. I do eat eggs (hopefully from healthy happy chickens-from Whole Foods). I have recently been trying to eliminate dairy because of constant sinus problems. I'm NOT happy about not eating cheese, and my results are mixed...so not sure on that.
Anyway, if UTIs are not a problem for you, I wouldn't worry about chicken for that reason. The definitive information about the meat industry is in the film Forks Over Knives. It's more than most of us want to know about meat.
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wow. New info. Never heard about chicken uti connection. I don't eat a lot if meat but it is usually chicken. I'll have to do some research.ive no problem cutting out anything to prevent these hospital stays.
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Hi Lita57 There is no mention re organic chickens in the article. I agree that if UTI's are not a problem for you, there is no reason to stop eating chicken.
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Hello ladies,
I'm in the midst of finding out about my recurring breast cancer and discovering a whole new medical world in the process. Reading your thread has been fascinating and valuable. I had stage 1 breast cancer in 2006 - lumpectomy plus radiation and Arimidex. Then nothing until this August, I got enlarged lymph nodes on left side and swollen left arm. Ultrasound indicates malignant; bone scan shows probable mets to thigh bone. Biopsy in the offing. I'll learn more over the coming days but wanted to introduce myself now.
Mary-Evelyn
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welcome Mary-Evelyn. Glad you found us. This is a wonderful group of supporters and educators. Ask any questions you want. It is safe here.
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Welcome Mary-Evelyn, you will find a wealth of information and support here and will learn more here then any doctor could ever tell you. You will find that many of us are doing well with our treatments. When you get all of your information together and your treatment started you will feel like things are more settled. In the meantime, hang in there and know there is always someone here to help you
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Deanna. I felt gut punched when I found out about the progression since I was feeling good and my TMs were well within the normal range although my ca 15-3 went up a few points. I had reached NED but only for 3 months
I start CMF chemo on Thursday and have an appt to meet with the interventional radiologist next week to discuss another biopsy.
Linda E. sorry about your progression. 3 years on one treatment was really great. Hope the next one is even longer!
Bab
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Welcome Mary Evelyn!
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Kaption: Pork is raised in even WORSE conditions than beef. I read a feature article in the Rolling Stone years ago, and from that point on, I stopped eating pork.
My husband is Chinese/Hawaiian, and one of his cousins used to raise pigs for the luaus at the Honolulu hotels. We visited his little ranch back in the 90s, and he raised his pigs humanely. They all were tame and happy and had PLENTY of room in their pens. It didn't stink as much as I thought it would either. Contrast that to the conditions in the Midwest, and it's night and day. You can't use hog fertilizer for plants because of the acidity, etc. The Rolling Stone article had photos of these absolutely awful "pond-like" bodies of hog urine/poop. The journalist said the stench was enough to make you lose consciousness.
The corporate beef industry is a nightmare, too. I read a book years ago about how beef for fast food restaurants is raised, and you don't want to know about it. Disgusting. When DH and I do eat "meat" (which is not that often), we opt for pasture-raised bison or organic beef, which can get expensive.
I eat vegetarian once or twice a week because nowadays it's actually CHEAPER. I have to be careful with beans and nuts, however, because they rip my colon to shreds. Didn't have that problem in my younger years, but post-menopause, it's been a real problem. And I LOVE legumes! Our digestive tracts change as we get older. My brother can't eat any tomato products now that he's older. We're part Italian, so it really sucks for him, poor guy.
Lita
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Right, Lita. It is very difficult to find any meat or fish that are raised in conditions that are healthy for them or us. It's very sad.
Yes, I went through a period when I could not eat tomatoes. That was really difficult!! Much harder than avoiding meat.
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babs. Glad to see you have your next tx plan in place
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