Bone Mets Thread
Comments
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OMG Linda. I sit here with my mouth hanging open and feeling like I want to scream. You are so wonderful and give us all a lot of support. You don't sit around waiting for someone else to do what you are able to do yourself. This just does not make sense.0
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Dee, I'm sorry I worry you; but I do appreciate being thought about. I need to get better, get more spunk, so I can stop giving you cause to worry. What are they doing about your med?
Chelle, that is an amazing view. I think it actually surpasses my Viking River Cruises views from our window. Where are you? I'd love to talk my mom into going.
Terre! Shoo! Chemo brain is the pits, but thank god you are not lacking in the $3500. Seriously, I'm taking a moment to say thank you God.
Momallthetime, I agree with you. I have rarely had a problem getting my report, especially if I remember to ask for a copy while I am there. I also think bco.org is a very finicky site. The only way I can navigate it OK is with my computer (Windows). Android just does not have the capability to help us navigate the site. IV vitamin C is unbelievably expensive. I did contact a naturopath to look into it. I simply can't afford it, and I would definitely try it out. Best wishes to you and Dani.
Oh, Lindalou, I'm sorry you are back to the walker, especially for the fractures that are making that necessary. I agree, though, you don't want to fall. I'm back to using my cane pretty frequently and may be close to a walker. I thought I'd never live to see the day, but when you don't feel stable anymore, well, I don't want to take a chance.
Wendy. Hemp Oil. Ick to the max! I guess that's a foolish thing when your life is on the line, but I took too much of it one time, and after that I could not get it past my throat. Maybe I should try to get some more and try again. I don't think I was stage iv when I tried it last time. My incentive might be a little better now.
Auroaya, what a relief! Thank you God! I agree with Deanna, that it was a seroma.
Oh yes, Annie, we should all take a lesson from you. Once our pain starts it can grow into something incapacitating. We all seem to need to learn over and over again to get help. It is part of the new normal.
Awesome news Terre!!!!! Never hold back such news. It is encouragement for all of us.
I know I missed some of you. It was because of a computer glitch. Please forgive me, and know that I celebrate your good news and feel your upset at bad news. We are all doing our best to live well in the face of all the challenges presented by cancer.0 -
I just typed a really long message and lost the whole thing. Darn it! So here's a short one -
Dune - great to hear from you!
Chic - what you're going through is normal. It's early days for you and it does get better with time.
Lindalou sorry you're using a walker, but better safe than sorry.
Everyone else - hugs!
Terre
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Linda, I'm so sorry. If it helps, he'll feel like a coward his whole life. I guess some guys just get scared of the future and can't handle it.
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Dunesleeper, can't you do hemp oil transdermally? I haven't really looked into it
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<What does a good day look like for you, what about a not so good day?
I haven't had a pain pill since the week after my spine surgery, and even then, it was just Tylenol. A good day means I have some energy, and a bad day means I'm drained and have extra joint stiffness. I'm generally stiffer than I used to be, and since I have some lymphedema after a bout of cellulitis, that increases and decreases. The hot flashes and night sweats also vary wildly and I'm not sure why.
The worst part at this stage is my emotional issues. There isn't a day that goes by in which I don't think about the disease. Sometimes I have intense fear of the future. Sometimes I am very optimistic. Sometimes I'm even fatalistic. This is all the stuff I can't really share with anyone, because I don't want to upset my husband and family, my coworkers already seem to treat me like I am defined by my cancer and yet don't make things easier on me, and I haven't told many of my friends/acquaintances. (It's not like I wanted so many of my coworkers to know, but you tell one or two people and they spread it around)
< ...left feeling very isolated. Does anyone experience that too? There might even be a level of resentment there too? People try to skirt the subject due to their own fear of cancer.
Actually, I'm sick of coworkers talking to me about nothing but the disease. I travel, I have interests and hobbies, I shop, I decorate my flat...yet no one talks to me about regular stuff like that...I'm no longer a person...I'm a disease and I resent it. Particularly since they don't actually assist me in any way. I have been burying my filing for weeks because I'm not really sure how they expect me to move it all to the other building and then file it away in the obstacle course that's the little filing cupboard. I tend to feel more fragile than I probably am. I worry about falling or getting injured...I'm not happy in crowds and I worry about rough walking surfaces.
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Dunesleeper. Lol yes it tastes pretty bad but they do have it in capsule form now. As well as the CBD capsules that contain no THC. They are coming out with tons of stuff.
Wendy
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Milaandra I totally get what you mean. Most days I'm pretty good mentally I guess I can push it away for a while at a time. Then it comes flooding back that I have lost so much already and this is my new normal ...and I feel so trapped and scared. I feel I don't have the right to socialize or make friends because I'm not a whole person anymore. Hell I had a crisis getting a new phone...will I be around till the end of the contract?? I used to be an equestrian , I used to be a gardener, I used to own a business I was the strong one I was happy. Now I have to find a new happy and some days I think I just can't . Isolated is a good way of describing how I feel to. It's probably why I find myself here so much because nobody else can understand what it is we are going through. I guess we are a work in progress eh?
Wendy
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Good morning all,
Dune - nice to see you. Hope your mouth is shut by now!!?? LOL I could just picture you.
Saucy - you have a pretty good description of what some of us are feeling. There are good days and bad days. With no advance notice, sometimes there's a reason and sometimes not. Morning stiffness could be caused by hormone blockers or other tx. It takes me a good 1/2 hour in the am to get moving properly. And although people mean well, they can sometimes be very ill at ease. The people who really get it are here on the boards.
Aurora - I hope you're feeling even better this morning!
Lindalou - Hoping you can put back that walker in some corner of the house soon. Mine is stored in a room and don't want to use it any time soon! How is the pain?
Wishing everyone a good Sunday filled with a few joys and smiles.
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Good morning ladies. I have so much to share, so much is striking a chord today. Need to get my thoughts together so I sound rational. Boy, sometimes you gals sound like you are in my head. Meanwhile, here is a picture of Mallory to make us smile..........much love, Myra.
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Wendy,
You are still quite new to stage IV. Give it time. A short story; When I was about 4-5 months out from my dx, I was asked to join my younger dd's in laws and other family members on a trip to Austslia and New Zealand. It was planned about 16 months in advance. It really hit me at that moment. Would I be here 16 months down the road? Would I be well enough to travel? I had never been to that part of the world and had always wanted to go. The dates fit perfectly with my winter break from school. So, I took a deep breath, bought travel insurance that covered pre existing conditions and waited. Doctors appointments, PET scans, Aredia infusions, work and family filled my time. And then, I was on a plane to New Zealand. It was a magical trip and I loved every minute. On the day I was to fly home, I climbed the Harbour Bridge in Sydney. It felt like the ultimate triumph, like I was flipping cancer off. Since that time, I have never hesitated to make plans or to live each and every day. Yes, some days my dx hits me and some days my body feels like a 2x4, but every time I plan for something in the future, every time I enjoy life or have a fulfilling day at work or with my family, I am flipping cancer off. Give yourself time and you may eventually decide to live with cancer instead of spending your days dying from it.0 -
Myra,
So cute! Babies make everything better 😊
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Carol, We haven't heard from you recently. How is your recovery going?
Aurora, Let us know how you are doing. I hope itbis all good news from now on.
Karen, Welcome to the bone mets thread. I am sure you already know we have many amazing people here.
Lindalou, I am sorry you are back with the walker, but it is so much better than a serious fall. Sometimes we don't take advantage of things like walkers when we should.
Milaandra, I know what you mean about feeling isolated sometimes. I have told my husband, my children, my husband's siblings, and only a few close friends. (My parents and sister are no longer living.) I was clear that I did not want mbc to become my entire life, and I told them that they are not allowed to treat me differently now. Since I was so selective in telling my friends, it has worked out well so far.
Terre, You must have stared a countdown. How many days before your move? So exciting! I don't enjoy packing or unpacking, but moving into your own home, YAY!
My DH had his CT scan on Thursday. His pcp called before we got home, so I knew the news wouldn't be the best. DH was told that he has a horseshoe kidney, no big deal there, and that what looked like an enlarged lymph node on the us was actually part of the kidney, good news in a way. Unfortunately, there is "something" in the kidney. It actually caused the pulmonary embolisms DH had last month because it is pressing on blood vessel. Now DH needs an MRI. He will need surgery regardless of whether the "something" is benign or malignant. I am still hoping for benign and also hoping no major blood vessels are involved. I am so glad his pcp decided to investigate all possibilities here. All blood tests so far are normal, so hoping that is good indication. I know this isn't what this forum is for, but I had to get it out. This hasn't been a great first year of retirement for us. Thanks for listening - again.
Lynn
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LindaE, you are so strong and inspiring and resilient!
Myra, thank you for the beautiful pic of Mallory, just want to kiss those chubby cheeks!
LindaLou, hope you are getting some relief from your pain.
Keeping everyone in my thoughts and prayers, enjoy the day.
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Myra, I love the picture. Mallory has a serious expression on her face like she is saying, "Really, Grandma? Yet another picture?" Lol. She is growing so quickly.
Lynne
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Lynn, the woman who works for me went thru something very similar. They were sure she had a renal cell carcinoma. All the tests pointed to that. She had the planned nephrectomy and on the table they did the required biopsy...BENIGN! MD was shocked and so were we all. I pray the same for your DH.
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Thank you, Myra. That is so good to hear. DH has no symptoms, so hoping for the best
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Myra, she is getting so big already! Seems like she was just born! What a beautiful baby!
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Lynn, I'm glad the docs were throrough in their investigation. Wishing him an easy surgery and B9 results. You hang in there!
Yes, Carol we'd love to hear from you. You must be home by now - hoping you get all the pampering you deserve!
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Just for the sake of saying it, it was actually Karen who used the term isolated...I just quoted her questions in my reply. I guess I should have actually used her name. Doh!
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Good morning ladies,
It's Sunday and I'm having a challenging time. I can relate to what was said about people treating you differently. Because of that I've told very few people. There are times I'd like to unburden myself, but I remember when I was first dx 5 years ago how everyone treated me and I just can't go there. I had my onc appointment Friday. He said my labs were okay. He doesn't give me too much info -- at my request- because I obsess And freak out. He did not get my pet/ct scan sent to him from Lahey clinic that I had at the end of Sept. He wants to see that and probably do another. I can start back on zometa now that my broken femur is 9 wks out. Today my radiated from August ribs are hurting and totally have me unglued -- is it old stuff, something new?? WTF? I hate this. I feel like I can't get my bearings. Okay, trying not to tear up. Hugs, Rachel
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Hello everyone and please forgive me for not addressing each one individually but I do read your posts and send you positive thoughts for each one of your situations.
Update: one of the lab cultures from the wound came back positive for a bacteria that is usually harmless in the skin but in this case they're going to treat it as an infection and will refer me to infectious diseases Doctor. I asked the treatment is continue with antibiotics and I asked if this meant longer hospital stay and he said only a few more days.
I appreciate your support and wil keep you all in my pr
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Aurora, it is good that they are taking an aggressive approach to the bacteria even though it is usually harmless. The infectious disease doctor will be able to take charge of the issue and get you headed in the right direction. I can imagine how frustrating all these things must be to you, but you are doing the right thing. You seem very brave to me. I will continue to pray for your quick recovery. I hope you are home soon.
Hugs and love,
Lynne
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Rachel,we all tear up sometimes. It is normal to feel the way you do. We all hate this disease and what it does to us and those close to us. If you need to unburden yourself, everyone here is ready to listen. Don't try to keep it inside. Hopefully, the rib pain will subside. Every time I feel a twinge of pain or a new sensation, I immediately think that the cancer is progressing. Of course, that is usually not the case, but we all know the feeling.
I hope you feel better soon.
Lynne
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Is anyone here from the U.K.? I'm suppose to be working for 4 months in Nottingham. I already have my flat and so hope this happens. I will need to find a doc or facility that can administer faslodex and zometa. I'm assuming I'll still be on that treatment. I feel miserable today, I really hope this improves. Don't know if I overdo on the weekends because I want to be normal. Rachel
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LindaE--just remember karma is a bitch. You'll be fine. I feel for you though.
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Rachel, I'm a Canadian expat living in Scotland. If I were you I'd do a Google map search for a GP near your flat or workplace and contact them before you move. They can guide you through whatever you need to arrange your treatment.
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Auroya,
Glad to hear they are being extra vigilant, and hope they can clear up at least that worry.
Pain was worse today so I took a Tramadol - was disappointed that it gave me no relief, I was really expecting it would help. Having another MRI 11-19, maybe they will figure out the source and whether they can do anything. I might try the Tramadol again (can take every 6 hours) to make sure it is not working. Frustrated I couldn't even stand up long enough to finish making lunches. Anyone tried Tramodol with success?
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Just read an article on the internet that states that the University of Windsor is starting clinical trials with dandelion root! I must start drinking more dandelion tea!
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3Holly, Tramadol never did a thing for me. I'm finding that a tylenol & an ibuprophen work wonders. My onco was the one to suggest this. Sounds too simple, but I found it worked really well on bone mets pain. Hope you get some relief soon,
Cheers, Dee
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