Bone Mets Thread
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Wow living to 85 would be a dream for me.
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Thank you Marilyn! I will ask my onc about it...really need kidneys:).
Decision freak- sorry this triggered a sharp decline for your mom. Sending wishes for some rich times with her in the days and months ahead. Seeing your mom suffer is awful and it is one thing that is hard for us as moms...knowing our children are seeing it happen to us. She knows you are doing your best for her.
Justhoping to get that 20 months from the Ibrance and Letrazole combo!
Monika, hope the changes help you feel better!
I noticed that my voice is now going away in the lower registers...singing along with the radio and poof! Anyone else have this?
Hope it's a good weekend for you all!
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DecisionFreak, I am sorry about your mother's decline in her physical abilities and self-dependence. I once read a the results of a study done on elderly patients. It was measuring how quickly older people lose muscle tone and the abilities to perform physical activities in a hospital or nursing home setting. I don't remember the exact numbers, but the results were startling. Abilities are lost very quickly when the elderly are confined to bed or are sedentary for any length of time. I witnessed that myself in both my father and my mother-one-law. I hope that pt can bring back some of your mother's strength. I will pray for you, your brother, and your mom. Please don't neglect your own health.
Lynne
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Decision freak I am sending thoughts of peace to your family. Hospice has been a blessing to my mother increasing her comfort and increasing staff that sees her.
Valarie Thank you for the beautiful picture of flowers. I swear I could smell them.
My dd just had bachelor buttons tatooed to her fore arm. These are flowers my mother would grow and spilit then put in my garden.
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Kathryn
I'm having voice issues which started shortly after taking Ibrance. I sound like a 90 year old smoker who's worked in a foundry all his life. It comes and goes and there's nothing I can do to help relieve it.
I saw an ENT who used a scope to look down my throat and she said I have beautiful vocal cords 😀
She also said to try humming to music to keep my vocal cords active. Weird.
Amy
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Yikes! Thanks Amy! Oh well, it's not the worst thing
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Kathryn, in the scheme of things I look at this just like I do losing the occasional toe nail. It's been happening since chemo in 2013. They always grow back but its just another weird SE. And I definitely do NOT have a fungus, which is the common culprit. Have a great weekend all.
Amy
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Mary, Your daughter's tattoo is such a nice tribute to your mom. Did your mom get to see it yet?
Valerie, Those flowers must have been so fragrant and so many varieties!
Kathryn, Looks like you had an incredible place to stay.
Wishing all a good weekend with Spring weather.
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Hi, to all those that posted about my Mom and the rest of you that are coping gracefully with so many unexpected challenges. I witnessed my mother's rapid decline in the acute care hospital and it blew my mind. My brother and I felt that she came closer to dying every day she stayed in the hospital, and I told the doctor very bluntly what we thought.
I am doing my best to take care of myself, but we have filial and legal obligations. I live in the Deep South where people are always watching. I have been resting but I have no choice but to start cleaning the house because we will have a flow of people coming in and looking in every nook and cranny. It is difficult to understand the pressures we are under.
I bent slightly the other day in the shower the other day and my back went out! The osteopathic doctor that treats me for chronic nerve pain from fibromyalgia gave me a prescription for flexeril, and I am hoping that will help.
My Mon will be wheelchair bound. The wheelchair will not go through any of the bedroom doors. I am trying to think outside the box. I decided today to dismantle the kitchen table and remove the chairs, move the boxes filled with junk somewhere else, clean the kitchen, move the medical bed into the kitchen nook with a television, and buy privacy screens to turn the area into a mini-bedroom. It is only way to keep the house sanitary because we can't use bed pans in the carpeted bedrooms or carry the bed pans through the living room. The kitchen has nice walls so I thought I could hang some of my mother's art work around her. So, that is as far as I have gotten. Any ideas are welcome!
Hugs to all and hopes for a wonderful weekend.
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Decision Freak- so sorry about your Mom's decline. She is so lucky to have you and your brother in her corner and being so fierce about her care.
Valerie- the flowers are so beautiful-makes me miss my house and garden. I'm now living in an apt.
Mary-loved your DD's tattoo-a great way to remember her grandma
Amy & Kathryn- I also get what I call my "sexy voice" lately-not so bad!
Have a great weekend everyone,
Babs
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Imagine how intimidating we would be if we all got together with our low, husky voices!
I am feeling a bit down today. I try to stay optimistic, but every once in a while the reality of mbc hits home. The latest losses on the boards have brought me back there. My DH doesn't understand why I keep coming back. He doesn't really understand how much support I get here. I worry about what will happen to my family when my time comes. I know they will comfort and support each other, but I hope others rally around them, too. Of course, my DH insists that I will live another 20 years. I hope he is right, and I wish at least that long for each of us here.
We have had some unseasonably warm weather here in NH. I opened all the windows two days in a row. How wonderful it was to fill my house with fresh air. It's time to put the winter behind me. We still have one last pile of very dirty snow out by the street. It seems to be the last stubborn pile in the neighborhood, just a reminder that Mother Nature can be sneaky.
Quick update on my DH, he is doing GREAT! I love saying that.
Has anyone been able to reach Myra? I am worried about her.
Aurora, Cristina, Carol, DaughterLove,how are you doing? It has been a while since we've heard from you.
Valerie, We are happy to have you back.
I hope you are all enjoying the weekend.
Lynne
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Hi Lynne and everyone else. I don't post much but I read all the time and pray or send positive thoughts for each one. I'm still getting chemo after I had progression to my skin n last year but they were just two little tumors and I had them excised by the dermatologist. My last bone scan shows improvement over the last one so my onco is willing to put me back on anti hormoneals possibly Faslodex. I should know next week.
Everything else is going peachey thank God.!i pray you all have a pain free se free weekend.
Aurora
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Hi everyone! I've caught up with reading and my brain is full (think Far Side cartoon). So I won't address everyone, but sending hugs to those facing challenges and high fives (or tens) to those with good news (like Aurora!).
Decision - so hard to go through with your mom. Went through the same with mine 12 years ago. Hardest thing I've ever done. The bedroom in the kitchen sounds like a great idea and plan. And I do know what you mean by evevryone judging, etc. When my mom was failing, relatives were coming in and opening up hutches, etc, fondling my mother's treasures, looking for dust, etc. On the up side, I think I ate my weight in brownies in a period of about 8 weeks. Who knew there were that many kinds?!? (I'm trying to lighten things up here for you...but everyone did bring brownies).
3-16 - your daughter's body art is amazing. Bachelor buttons were my grandfather's favourite flowers and I love them too. The tattoo artist did a great job on your daughter's!
Lynne - you've been through so much, I'm not surprised you're having a down day or two. I'm so happy to hear your DH is doing well! What great news! But I think often, once the really hard part is over, one kind of collapses emotionally. You're strong so for long, then the world kind of caves in on you for a bit. So hug yourself, consider yourself hugged from New Zealand, let yourself be pitiful for a few days, but don't live there forever.
Wendy - the fact that go you to the gym inspires me. Glad you're watching NZ. Now,,,,we just need to get your stable enough to come visit. Will give you the guest room that looks out on the cabbage tree.
Amy - the description of your voice (that you wrote) made me howl with laughter. Sorry you're dealing with it, but the way it was written was hilarious. I think "sexy" voice is better. Watch some May West movies for inspiration and start practicing the lines perhaps?
Great advice, Marilyn. IWrite - I can't sign along to anything anymore because my voice has gotten deeper. My husband just sent me a link to an article about cats picking up their owner's dialects. Tom, the kitten I'm the most bonded with, is now nearly a year old. His voice has changed. He's neutered, but he's such a boy. Now instead of these cute little chirping meows (which his sisters still have), he's like a bass Meow. Wonder if he's mimicing my ever dropping voice?
Valerie - the flowers are lovely. Edward Gorey and flowers - two fave things! How fantastic.
And speaking of fantastic -have you all seen this? http://www.sciencealert.com/new-treatment-dramatic...
Eleven days!?!?! With HER2+?!?!? Praying it's real and survives the next round of trials.
Lindalou (just typed Londalau...sheesh), Dee, Deanna, bosco, Patty, LindaE, Caryn, all the newbies, and everyone else...sending hugs.
Terre
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Great news Aurora!!! Happy dance time
Lynn. So happy your DH is doing so well
It's a gorgeous day in NYC. Hope everyone enjoys their day!
Babs
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Auroaya-How do they know the skin tumors were progression of bc and not just skin cancers? Curious
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Hello to all,
Add my name to the husky voice club. I can no longer really sing with my class as I have no upper register and lots of cracking when I try. Ah well, first grade has become so academic, there isn't much time for singing anyway.
My thoughts are with everyone. 3-16, gorgeous tattoo an very well done. Hi Terre, good to see you post
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Terre
You're right, sexy sounds better than old fart smoker. Thanks for looking at the bright side.
Amy
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hello ladies! I've been reading and reading this thread. Still a long way to go! I have a question for ladies with rib mets. For months I've been getting cramps in the same spot in my rib cage. It even wakes me up. What did your rib mets feel like? Also I've started reading a bit on alkaline diets. Any thoughts on this? TIA
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Hi all,
Aurora - celebrating your peachey news!
Lynne - sorry you have a little down period. It sure sneaks up on me as well once in a while. Be kind to yourself, you've been through so much these past few months. Great news on DH!
Terre - sending hugs right back at you!
HopeFaith - my rib met is like a dull stabbing burning pain. Although the met is small, the pain affects a large area of my upper back.
Ladies, question for you. I recently switched from Aredia to Xgeva and notice I have considerably less pain from bone mets. Anyone else out there?
Sending hugs all around and wishing you all a good week-end!
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Lynne so glad to hear your hubby is doing GREAT! I think Terre hit it on the nail when she mentioned you having been so preoccupied with your DH you put other worries to the side, i'd say it's called "survival strategy", your adrenaline was on high gear, how else could you cope with the back and forth, and seeing someone you love in such a situation? You are a terrific Human being, a great wife, great mom but in a difficult situation. So you have a few down days, you need sometime to curl up and feel your feelings. I think you guys are just such an incredible bunch! I tell you i take my sleepytime tea, then the bonestrength pill(that helps me sleep) and sometimes a sleeping pill sometimes a triptan, anything so I don't wake up in the middle of the night and face the demons. You have lots to look forward to, and your family needs you, that's for sure. Warm warm hugs.
Valerie ahh those flowers, what a great feeling. thx.
Mary that was so touching. Such a warm sentiment from your dd. WOW.
Aurora yeeh for you!!!
DF I also know that actually anyone entering the prison of Hospitals get disoriented. Much more so the elderly. And your mom going through what she went through for sure. But at this rehab, could they try to do some therapy with her? Walking, exercising her ability to hold things etc… Also when you are home it seems you are doing all the right things, eyes on you or not. Would a commode be an option for let's say when you are there? Even if it will be used only for a short period. Would she be able to seat in a recliner for part of the day? If the motives of these "visitors" are honest then it could be a blessing to have some distraction. Take good care of yourself.
I thought u guys would like this good feel moment. Someone sent it to me.
GN everyone....
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And Terre thx so much for the link. It could be very useful for Dani in the future. Welcome back.
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Hi, everybody, I am a writer, and I wrote a poem a few years ago about my voice getting deeper and the sound I make when I laugh! It was interesting to read that some on chemo have developed a deeper voice.
So many came forth to empathize about my mother. Thank you for your kind words. I have to plan for her being limited to a wheelchair and using a bed pan. The case worker says it will be too dangerous to use the toilet or a porta potty. I am now looking at having someone widen the door to one of the bedrooms to allow a wheelchair to get through. I am going to be running as fast as the wind to get ready. I am trying to fight despair over my mother's deterioration. Reading your posts uplifts me. It is hard thinking of losing my Mom but I need to find ways to cope. I am not doing as well as I wish I were. Well, the only way to get through is to keep going.
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catchubg up on y'all. Dung a lil better. Having a hard time crawling out of this huge hole of sickness I've been in.
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DF, I'm sorry to hear of your Mom's setback. Hopefully, she can get some rehab and grasp at a bit more independence at home with you by her side. The kitchen plan sounds like a good one; very creative. I really don't tolerate snoopy people well myself. You, your mom and brother are the priorities, and people shouldn't be looking in nooks and crannies anyway. Let them snoop and see what they see. You only have so much time with all you have on your plate, and you need to take care of you, too. Always thinking of you and family.
Terre, thanks so much for sharing the article/link on the HER2+ drug study. Very interesting and sounds very promising!
Mom, the puppy video is so precious. Thanks for sharing!
Best to the rest.
Edit - DF, didn't see your latest posting, but widening the doors is good, too, and hopefully not too costly. I know you'll be running, but take some time for rest and meditation, too.
Patty, good to see you back, but sorry you're still not feeling completely well. Hugs.
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DF
I've seen narrow wheelchairs designed to fit through a standard door. It may not be as comfortable as standard sizes but for your purposes, it might work.
Kudos for problem solving. The bed and television in the kitchen nook is brilliant.
Amy
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DF,
If you can't find a narrow wheelchair or it won't serve your purpose, maybe someone in your church would help to widen the doorway. Many churches have volunteers to help out in such situations or will help defray the costs. That is what neighbors and fellow parishioners are all about. They don't think of it as charity in a negative sense, but they feel good about helping out when help is needed. It's just a thought, and I don't know if such things are done in your area. Visiting nurses or the social worker at the rehab facility might also know of resources that could help. It is part of the social worker's job to make the transition to home as easy as possible. It sounds like you have thought things through and have done well with all the details, but remember that you and your brother need to care for yourselves, too. Don't overdo it
Lynne
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Hello to all,
Patty, praying you'll feel better with each coming day, nice to see you post.
Mary, I just love your daughter's tattoos, the artist did an amazing job. What a lovely tribute to your mom. Both of my girls have quite a few tattoos but they're not really in areas where you can see them. Although my youngest has her entire side tattooed! Unless she's in a bathing suit no one would know.
Lynne, I'm so happy to hear dh is going great. I'm so sorry you were a little down, it does catch up with us sometimes doesn't it? We get so busy taking care of others we forget about our own problems and then those feelings of sadness just come rushing in out of nowhere. Sometimes I'll just start to cry out of the blue, at the strangest times. In the middle of preparing a dinner, or driving in the car, sometimes just laying in bed at night. It's overwhelming wrapping our heads around it sometimes but I think we do an awesome job of holding it together and staying upbeat and positive. You have been a beacon of strength these past few months!
DecisionFreak, I know you'll find the best possible way to meet your mom's needs. AmyQ and Lynne have given you some really good suggestions. All the best to you!
LindaE, so good to hear you've had less bone mets pain since starting the Xgeva. Makes me wonder if I should try it but I'm afraid to change and if dh gets laid off again and we risk losing our benefits I would not be able to afford it. I am curious though if it is contributing to your overall feeling better.
Terre, nice to see you here! You've been one busy girl, I don't know how you do it.
Aurora, so happy to see how far you've come and that you're doing so much better.
Momallthetime, thanks for sharing that cute video, loved it! How is Dani feeling?
Hello to everyone here, I can't name you all as there are so many of us. Still worried about Myra, does anyone have any info on how she is doing?
Hugs, Annie
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Terre, Thank you for the link to the article. It sounds promising for HER2+ people. It is amazing that it seems to work so quickly Ned also that it was discovered unintentionally. I, too, hope it turns out to be successful with further testing and that its effects are long lasting.
Mom, Thank you for your reassuring words and for the upbeat dog video. I hope you are able to sleep better. You do so much, and you really need to stay healthy yourself.
Aurora, I am glad you are feeling better. Let us know what treatment you and your onc decide upon next week. You are a strong woman and have come a long way.
Patty, I hope you continue to regain your strength. Sometimes the medications can sap our energy as they treat our other symptoms. Take it easy.
Marilyn and Kathryn, it is amazing how much onc medications can affect us, especially with other tx we are having. Things that seem harmless can really have serious impacts sometimes.
Babs, I hope you have more and more beautiful days in NYC. Part of that is selfish of course, since your weather often makes it up to my neck of the woods eventually.
Mary, Your daughter's tattoo is beautiful. Thank you for sharing. How is your mom doing? Are you feeling any better about things? I know it can be overwhelming to have so much hit you at once. We are here to support you or act as your sounding board if you need us.
Everyone here remains in my thoughts and prayers. It means so much to know you are all here for me. You are a wonderful group of special women. Thank you, thank you, thank you.
Lynne
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Patty glad to hear from you. Hope you feel better day by day
Linda I don't feel anything from my Xgeva injections. I've been taking them monthly for about 6 mid now
Momallthetime loved the video!
It's beautiful today so hoping everyone gets to enjoy the day!
Babs
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Patty welcome back
Terre careful I may take you up on that offer lol. Or at least for a cup of tea on your veranda🤗
Aurora great news love it when one of us gives it back to cancer right between the eyes.
Momallthetime I saw that one on Facebook too so cute. Love animal videos they always make me smile.
Mary love the tattoo my sister wants us to get a tattoo as well I have one and I'm such a big baby I said that would be the only one. But hey you never know.
Lynne I'm so happy to hear your dh is doing so much better. You are unbelievably strong and I'm very sure he knows it too. Sunnier days are ahead.
So I start the clinical trial on Thursday . Get my first shot of Faslodex in the bum this will be all a new thing for me. I swear I should be glowing green from all the scans and tests I've had done in the last week. It has been interesting for me my tumour shrunk from last measurement .4 cm and that's with no treatment at all. I did ask my oncologist about the pain I was having on my rib and chest. I asked her well it's gone no pain is that normal for bone mets she said no and that it was probably something else muscular related. I sat their looking at her thinking you have no friggin clue do you.? I was pretty mad I almost had it radiated I'm so tired of incompetence. At least on this trial I will be somewhat monitored even if it's as a Guinea pig. I was told by the study nurse I am not allowed to take any vitamins or supplements but if I need relief from SE I can have a prescription of whatever I need. This makes no sense to me at all. But I will play by the rules for awhile see what happens.
I wish all you ladies a lovely peaceful Sunday .
Wendy
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