Bone Mets Thread
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Linda, your oncologist has quite the sense of humor, I got a laugh out of that.
Well ladies, I'm not up to the task of soaking up the water that has come into my basement from all this stupid rain. Of course it happens when my husband is on a job out of town and I'm here by myself. My back is so sore from trying to suck it up with the wet vac and soaking it up with towels. Ugh I hate rain! Not even sure where this is coming in from. At this rate I'll be up all night
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Aww geez Annie - sorry about the basement. Can you call a company to come in with their industrial equipment? They do clean ups like yours in no time and it's not as expensive as you might think.
Good luck
Amy
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Thanks to everyone who commented on the mixed results. Of course I will report on what they are doing after my next scan in 3 months.
Amy-what an adorable crew--each one is just too cute. I have one 15 mo old granddaughter that I adore, but I want yours too!
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Amy - adorable story and grandchildren. Those smiles! And what a wonderful gesture from your grandson. So cute!
Annie - ick. So sorry you're dealing with that. I'm over the rain too. Lucky for me, I can get home via an alternate route as Te Horo Beach Road (main route) is closed due to flooding. Enough!
HFC - glad to see you post. Sorry you're in pain but glad you're better overall!
Bluefrog - what beautiful children! More than enough to live for.
Auroaya - congrats on the exercise bike! Hope you get to move to another place for rehab. Some of them are just depressing.
Linda - glad your shot went well. Lindalou - hope you're doing ok too.
And hope everyone else is doing ok. Have to go to a meeting...hugs to all!
Terre
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Oh, Amy, what beautiful grandchildren! Each one is cuter than the next, and they all look as sweet as the 6-year old clearly is from your thank you note story.
And Bluefrog, your children are also adorable. They each look like they already have a great sense of their own style. And you look great, too! Thanks so much for sharing the photo. I agree our personal photos really do make this thread a special place.
Too funny about one estrogen tablet, LInda! But OMG, what I wouldn't give for even a lick! At one time, shortly after I finished tx for Stage II, I used to buy vaginal estrogen suppositories on-line and not only use them as RX'd, but also smear them on my face. Most docs think that vaginal estrogen is safe for early stage bc survivors b'cuz there's so little estrogen in them and it's the good kind. I haven't thought about them in several years b'cuz they had stopped making them for awhile. But since you brought up estrogen, I think I'll ask my UCLA onc about using them very occasionally, especially on my face. Probably not a good idea, but it doesn't hurt to ask.
HFC, so glad you're feeling more upbeat in spite of the pain you're still figuring out.
Auroya, fingers crossed that your insurance company will pay for the nicer rehab place. I know some of them can be so depressing. Hopefully you won't have to be in either one of them very long, but I'm hoping you can get into the nicer one for the rest of your rehab needs.
Good to see so many posting, even if it does make it hard to keep up and acknowledge everyone by name!
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Thank you for the kind comments. But I'm NOT in pain!! The pain meds controlling it well. I'm sorry the way I worded made it sound like im suffering. The mri was to see what's causing the pain when I'm not being medicated. My new pain doc is fantastic! ! I'm so pleased. See mo tomorrow. Not sure when I'll get the hysterectomy but I'll be glad have it done. One less thing to worry about. Peace and rest and love .......
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Guys you are so wonderful and fun, where to start, i don't know
Annie always in the most importune moments, agh!! hope you tried a commercial place to help you, it's hard work.
Deanna love your idea of putting the estrogen on the face! Onco here would have fits!! very cute the response of Onco to you, love that sense of humor.
Amy oh my - this picture is the fountain of life!!!!!!! Enjoy the bunch, they are so adorable!
Rachel, they look like you! Good luck on all those tests, it's good you have all the baseline, make sure to get copies of the reports for yourself. Just today, my hubby needed some special pictures to see deep into his eyes, and when I asked the nurse that I would like to get a copy, she asked the doc who was surprised I wanted it, he says usually he only gives it to docs but if I insist...Yep, i have it.
Xavo interesting no Pet was done. Dani gets it every 3 mos, the truth is something was always there, so they kept a close look. Now calcium is up, so they gonna give Zometa more often, but with all I have been reading here, I still wonder if Xgeva is better... I see so many ladies here on Zometa, Lynne how are you doing?
We'll prob know tomorrow or the beginning of next wk the results from the new assay, can't wait. The TM's are a mixed bag, it did not come down too much, the liver enzymes are still in the high numbers...but we are asked to be patient before the next scans prob in 4 wks, so as to give the new cocktail a chance. That has been the story for a long time. Give it time. Time that we don't know we have. So much stress, we try to distract ourselves with the mundane, the kids have to go to school, go to the extracurricular stuff etc... food on the table, we mingle with people BUT....are you kidding me, it's affecting all of us, I do pray to God to help me keep it together, I know the crew, even if they are all in their 20's are always looking for my cue, so I am always with my big girl panties on! And so it goes...
Auroya dear I really hope you could find the home away from home!
Linda yeah, for sure the best thread.
GN
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Hi to everybody!!
Amy, those kids are adorable, as was your story. Keep the pics coming, that's what makes this thread so great. That all of us live life when we can. Some days we can't, but these are the ups & downs of MBC.
HFC, I am so glad you aren't in pain. Bless those pain meds, I wish we didn't need them, but glad we have them. Perhaps the pain can be radiated.
Annie, I hope you're able to get some help with the flooding, you probably shouldn't be doing that on your own. Sorry you're having to do this.
Bluefrog, what a lovely picture. Thank you for posting.
We got a bit of sad news today. Before we moved to the country, we lived near Vancouver and DH & I spent 10 years painfully restoring a little Victorian Cottage. We did all the work ourselves, we did it to save this house. It would have been torn down because it was small, only 1800 sq ft & it was on a beautiful big lot. As you may or may not know, the real estate prices in Vancouver are insane. The house just sold again for $1,000,000 and that is lot value, the house will be torn down. We realize that they've paid their money & can do whatever they want, but it was such a great house. Sad....
Anyway, that's been my day, hope everyone's doing ok, Cheers, Dee
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Amy, your grand kids are so darn cute! Rachel, lovely family picture, beautiful children. Very good reasons to live.I find what your radiologist said very encouraging! Now you can really relax on your vacation! Annie, be careful to not over do it with the shop vac! It hurts my back thinking about it! Lindae didn't you have an mri on your neck? I don't ever remember reading on the thread about the results. I'm probably just being an airhead, but hoping all is good. Aurora, I'm praying for your quick recovery! Another facility could make a big difference. Mom, just keep on hanging in there, that's what us moms do. We are here for you. Best be going to bed, I have become such a night owl. Warm hugs to all! Love Chelle.
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Tearing down that lovely house sucks, Dee. Makes me sad too.
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Dee, tearing down that charming cottage should be a crime! I have always wanted to buy an old Victorian and fix it up, just never had the opportunity. I do enjoy refinishing our house. We are diy experts around here. Have recently redecorated the whole house. Love hgtv! The most expensive hobby a girl could have, but you can't take it with you. Chelle
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What a beautiful house! I would hate to see it torn down
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Dee that house is adorable and such a shame. Prices are crazy here I just moved into a heritage building down on Davie a hundred and ten year old building and they are talking about tearing it down next year to create a high rise. The garden is lovely in the pic is that your handiwork?
Amy your grandchildren are all so cute I envy you BIG time . My children are still in that age where they never want children. One can hope though down the road...
Annie I used to have the exact same problem with a house we owned. Every spring and fall we had a foot of water in the basement. After a rain storm it was a nightmare so I feel your pain. I was a lot younger then and I still found it hard. Be carful with yourself.
My eyesight is not what it used to be so sorry to the ladies I missed I wish you all a super day whatever you are up to.
Wendy
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Dee, that's so sad. Sorry. It's beautiful.
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Just swallowed some Xanax...scan this morning then an appointment with a genetic counselor. Sometimes it is all just too much. If people only realized...
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With every charming Victorian, Cape Cod or English Tudor that gets torn down another piece of history and lives are lost. There's too much of this going on in my neighborhood and no matter how much money is spent on the new McMansion, they look cookie cutter without charm and appeal. There are some neighborhoods who've put a moratorium on the destruction, I just wish more would do the same. Dee that breaks my heart.
Amy
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So agree about the houses. I think it's my generation's fault. I don't understand why all my friends need the 4 bedroom cookie cutter McMansion with a separate gift wrapping room. My husband and I decided several years ago not to go that route and stay in our modest 1950s home. It is more space than a family of four (that actually likes each other) needs and gives us room in the budget for great vacations and a healthy savings account. And thank goodness! With my diagnosis and not working, we would be so stressed about money in that big new house.
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Good morning all,
Annie - I hope all is better this morning. Those things always happen when we're alone.
Dee - that house is beautiful. What a shame.
Mommal - if Dany's calcium levels are high, Zometa or Aredia is better than Xgeva to reduce the levels more quickly. Hoping, praying Dany gets good results.
Chelle - I had neck scan which showed that the mets are stable. So much going on this thread, we certainly can't remember everything! Thanks for asking.
Lynwood - you will be in my thoughts today. I hope Xanax does the job.
Dune - I heard from Blondie - she's doing OK.
Lindalou - I also had a bit of nausea yesterday and could not keep my eyes open in the afternoon. Had a long nap and was in bed at 8:30. Could be from the Xgeva shot yesterday morning - will see next month. Anyway, feeling good this morning. Really a walk in the park for me if that's all there is to it. I'm hoping Xgeva will help with bone mets pain? Anyone out there experience less pain?
Love to see all the pics and seeing segments of your lives.
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Dee, that house is adorable. If the new owners are just planning to tear it down, maybe you could somehow get involved and see if someone could buy it cheaply (or just ask to have it for removing it) and move it to another location. I've caught a TV show where they do that. Usually the houses are true teardowns, but someone makes money by moving them to a new lot, doing some very basic upgrades, and reselling them. Seems like someone in need of a house could benefit here, including the new owners who could make a minimal amount and not have to pay for a teardown. Just a thought...
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Dee I was just wondering seeing as the house is smaller and a treasure couldn't they sell the house separately and move it. Seems such a waste.
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Last week I had my PET Scan and Bone Scan done. This Monday I just found out that the cancer is only in my bones not in my organs. I know it sounds crazy but I was so relieved. I really prayed about it and hoped for the best. I let my job know and I'm on disability. I only work 10 hours a week. Funny, but I was actually looking for a full time job right before I got diagnosed. I think I actually had a good chance of getting one of the two jobs I was applying for. But now I changed my mind and I don't want to lose my insurances (I'm on Medicare and Medicaid. Some days I feel better than others.
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Good morning all.
Lynnwood, you are in my thoughts today. Good luck with your scan & genetic session. (hugs)
When we moved from this house, we asked about having it moved because we loved the house, but the neighbourhood was no longer the lovely one we moved to. Nickel Bros said that it could only be moved locally because they can't get it to the water, the Skytrain line prohibits getting it on a barge.
I have sent the realtor an email imploring him to get the new owners to have the house saved onto a small lot, they are doing a lot of that in the neighbourhood. I can't find a picture of the house before we started, it was a mess. But we could see the bones of the house under all the neglect. Here's one of the back garden with four little racoons at the base of the tree and a couple of the inside. Thanks everyone for your kind words, it helps.
Off to get my flu shot & talk to the hospital. I seem to be having an allergic reaction to my new brand of anastrozole. Burning tongue, swollen bottom lip & extreme dry mouth. I don't get it, I've been on it for 18 months & no problem, but the hospital changed brands & I can't seem to handle it.
I hope everyone has a good day. Cheers, Dee
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Hi Rushjackson, it is good to hear from you. Your news is definitely good. I was also relieved in June when I found out that my mets weren't only in my bones. Are you adjusting to your treatment plan? It is not such a bad idea to stay in your current job and schedule for now. Once things settle down a bit for you, you can always reassess your situation to see if you want to move to a full-time position. I hope that your that the frequency of the times you feel good increases and that eventually you feel better all the time.
Dee, That looks like a beautiful, charming home, and it is sad to think that it will be destroyed. I am sure you poured your heart and soul into the restoration. Some people just don't appreciate the value of history.
Annie, Is your basement flooding getting any better? I hope you don't have too much stored down there.
Lynwood, Good luck at you scan and appointment. I hope you feel better.
Momall, I am doing well with Zometa, but I must confess that I take Tylenol for a few days around the infusion date. That plus drinking lots of water seem to do the trick for me. The infusion nurse had a bit of a problem finding a good vein this time, so it took three tries. She felt really guilty, but I told her not too worry because the more gauze and tape I had on my arms when I went home, the more sympathy I would get from my husband. It did make her laugh, but then she asked the head nurse to help.
I hope everyone has little to no pain and good scan results today.
Lynne
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Hi ladies,
You've certainly been busy posting! What caught my eye was some photos of some gorgeous children!
Bluefrog- I am in a 1950s split and though considered small it is more than enough space. Plus I am already in an outrageously expensive area, I would't want to spend even more. I wish that we had spent even less on a house but we bought after my initial diagnosis with the hope I would recover for years to come, and then the other shoe dropped...here I am, trying to work through the pain. I pop painkillers like candy and still the pain won't go away, not for long.
Dee- I love Victorians, any house with a history, but especially Victorians. We have some in my area, especially in the towns of South Orange, Maplewood, Montclair and Glen Ridge. All highly desirable towns to live in. Plus South Orange and Glen Ridge have gas lamps on the streets. I just love driving down the local streets. Especially in the fall- lovely Victorians and beautiful leaves. Makes my commute more enjoyable for sure.
My next onc appointment is this Monday. I just saw the pain management doctor. I just want to know: will the pain ever lessen at all? Or will I always be in pain until I die? How does it work with bone mets? If it spreads to a new area, will it stop in my bones? Why DOES it hurt? I don't understand the mechanism of pain in the bones. Can someone explain if they know?
I am trying to enjoy the days though. I told my husband, maybe 2016 will be a better year! My husband said, how can that be with a progressive disease? I said, well I want to focus on making good memories, so in that respect, I hope it will be nice. It was sad to hear that. I just want my husband and kids to be happy, with OR without me, and to continue living their lives and enjoying their lives, whether or not I'm here. There have been a lot of deaths on the FB metastatic breast cancer group, especially in the younger women. So I try to cherish each moment.
Lately, I have been craving sweets much much more. Is this a normal part of cancer? Does it have anything to do with cancer? I notice an unpleasant taste in my mouth that only candy removes. Is that from the Ibrance? Does anyone else experience it? It almost feels like a flashback to when I had real chemo.
My sister is coming into town tomorrow night!!! I am happy about that. She will enjoy Halloween with me on Saturday! I am going to work hard on enjoying this Halloween. Many pain pills will be taken lol.
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Cristina - I asked my Onc, my radio-Onc and my Ortho regarding the pain. Why does it stop for a while then flare up again? Unfortunately, they have no answers. I wish I had answers as well. I'm really sorry about your DH's comment. You have a positive attitude and keep it that way. I know it's not supportive to say such a thing, but sometimes we don't realize how hard it is to be on the other side of the fence. I was on the other side of the fence for 1 year when hubby had brain cancer. In retrospect, sometimes I should have kept my mouth shut. Congrats on seeing a pain specialist. They will help you. You are doing the best you can. And enjoy your sister's visit!
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Cristina,
You're in such a beautiful area. My husband lived in Montclair for a year when we graduated from college. I loved visiting him there and walking or driving around drooling over all the gorgeous houses.
Have a fun Halloween!
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Dee, I have heard of others who have problems when the change brands of anastrozole. I think that each brand has different inert ingredients, and you are probably allergic to one of those in the new brand. I hope that put you back on the original one since you had no issues with it. The pictures you posted are quite lovely. The garden is beautiful. The deer here would be fat and happy if they visited.
Cristina, perhaps you can steer you husband to some of the stories about long-term survivors. Maybe that will help his view of the future. Is there a support group in your area for spouses of people with mbc? Perhaps that would help. I know it is difficult for our families. They would like to step in and do something, and they can feel powerless. I, for one, intend to be one of the long-term survivors someday. I hope that you will be right there with me as we tell our stories. Admittedly, when I first heard my dx, I thought I wouldn't live to see the fall, but here I am, still alive and breathing! I cannot speak to the sweets issue. If I didn't control myself, I would eat sweets all the time, but that is nothing new. Enjoy your sister's visit. I hope that your disease does not progress in 2016. I hope that it remains stable or that you see regression and that 2016 is your best year yet.
Lynne
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Christina it's hard when our closest partners are doorknobs I think maybe they just don't know the right thing to say. My husband felt really bad for me at the time of my diagnosis and kept patting my knee I felt like drilling him. I kept thinking one more pat and I pill be patting him in the face. I'm sorry you are in such pain it's something I get to look forward to I guess..
I try to listen to my bodies urges but I think the sugar one is dangerous so I choose to ignore that one. Cancer loves sugar we all know that I think it's been three months since I've had anything sweet besides fruit. Sadly I always liked to bake and my twin boys are noticing the lack of treats lol.
Have a wonderful Halloween and have fun with your sister. My sister has become my cheerleading squad all by herself.
Wney
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My dear friends, I have so much to say to each one of you, as I've been reading every day. But for now, there's a story I want to share. At this very moment, I'm sitting at the most charming mid-century metal-topped and carved wooden-legged table, smack-dab in the front window of a favorite pie bar cafe, people-watching out on Main Street. I just left the hospital where I had my pre-Xgeva blood tests (CA27-29, etc.), and I'm early for my opthomologist appointment. My baby-like fear of procedures trickles all the way down to measly blood tests, so I told the technician I was nervous. She said, "Do you want me to use the Butterfly?" She said it's the smallest needle and she reserves it for scairdy cats! When it was a over, I thanked her for a painless and not faint-inducing test, and told her my name is Valerie, which means "brave; courageous." She looked me straight in the eye, and said to me, "My name is Nadezhda. It's Romanian for "hope." I started crying. x
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Christina there is a new support group in the city on 46 st between 6th and 7th closer to 7th ave here is a link to their site
http://www.sharecancersupport.org/share-new/suppor... I haven't been there cause I haven't felt like shlepping into the city even tho it's close to port authority I did try the support group at the hospital I go to for treatment but it wasn't a good fit for me. Used to go to a good support group at Gilda's Club but Gilda;s closed abruptly last spring.. Enjoy your sister's visit maybe you can TP something for cabbage night friday evening.or just a dab of shaving cream on DH's car door handle. Re: pain ask your onc if radiating the painful parts will help. I had my hip and lower back radiated back in 2013 which did help a lot but the side effects ere no fun, but I would do it again if other parts bother me a lot. Meanwhile my other hip is acting up so I use a heating pad, some aspercreme and a couple of tylenol occasionally when it's really bad I'll take a heavy duty pain killer prescribed by my pain management doctor. Really would like to get medical marijuana but in Jersey it is very difficult to get legally.
Charlotte
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