Bone Mets Thread
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So happy for you Wendy. Things felt so different just 6 months (or maybe it was more?) ago.
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Wendy, WOOHOO for you scan results. That is great. Now about your knees, you do all that physical activity and exercise with two bad knees? Good grief, lady! You must have a a big "S" on your shirt and a cape flowing behind you. You are an amazing inspiration
Lynne
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Such such good news Wendy. Proof IMO that our prayers work.
Amy
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Thanks for all your well wishes lady this has been very bittersweet for me. A dear friend was on the trial with me and she has the exact same cancer as I do for me it's working and for her she got progression in the liver. This is so frustrating for me and shows me how this disease can cheat us. I have to ask myself is the difference the MJ or another hippy thing I'm doing or is it just the luck of the draw? Please pray for Joy I will try to get her to join in here. You guys are awesome on the good days as well as the bad.
Wendy
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Wendy- Well looks like Joy and I share some common ground. She has my prayers-
Hugs,
Carol
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Kaption-. Glad the migraines stopped for you. No idea why ?
Wendy. Doing a happy dance for you girl. Hip hip hooray !!
Hugs all around
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Not sure Patty. Maybe just outgrew them?? I still believe there was a hormone connection even though I still had them while I was on tamoxifen after bc #1. My dad's eventually stopped (he lived to be 82) but my aunt's have never stopped.
I did get off coffee for several years and that helped. I'm back to drinking coffee now, keep to the milder flavors.
Hope you find relief!
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thanka kaption
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Wendy, glad to hear your news, and will keep Joy in my prayers.
Walked a mile tonight. Whew...my legs felt like they were going to fall right off! But glad I did it. Now if I could just get in a habit of it. Have started taking some Lortab occasionally for pain, although the pain in my left ribs is almost completely gone. The only time I feel it is when I lay on that side at night. Hoping that's a good sign. I see my onc. on Tuesday to see when he is going to want me to start the Xgeva, I still have one root canal to go, the day after I see him. My regular doctor thought the XGeva wasn't a biphosphonate (sp?), not sure what to make of that. And he's leaving in December!! AGH!!! I've been going to him for about 22 years now...I HATE having to find another doctor at this stage in all of this!
I'm having some vertigo. I've had vertigo almost my entire adult life. Is this anything I should tell the onc, considering I just had all of those tests done a month ago? They did a CT of my head, and the PET didn't show anything either, I'm thinking it's probably just the same thing I've dealt with, but seems to be pretty frequent. Would like some advice.
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Gracie, good for you for walking! It's finally starting to cool down here a bit, so I hope to be getting back to walking now too. I've really missed it. And great news about the decreased rib pain -- clearly a very good sign! As far as Xgeva, it technically isn't a bisphosphonate, but a newer generation bone builder that works a bit differently. But it carries the same risk for ONJ, so for all intents and purposes is no different than a bisphosphonate, other than being a shot vs. an infusion. And re. the vertigo -- could your meds possibly being exacerbating it?
Wendy, great news on your scans! What a difference a few months can make! And I will keep Joy in my prayers. Hopefully her next tx will work great for her.
Aurora, I will have to ask Uzma how to subscribe to her blog. It's not immediately obvious to me, but I'll check with her and let you know.
My gosh, Amy, what a horrible reaction you had to Xgeva! It sounds rather terrifying. I've never heard of that happening to anyone. I'm so sorry you had to cancel your trip, but clearly that was a wise decision. I hope and pray your hip surgery will go smoothly. The first few days can be rough, but you will be amazed at how fast things improve, and how pain free you'll be when it's done.
So sorry about the migraines, Patty. My son gets really debilitating migraines where he can't tolerate light, sound, food, etc. -- and the one thing he's found (in addition to the caffeine in Coke) that helps tremendously is peppermint oil. If you haven't tried it, just pick up a 100% pure essential peppermint oil and rub it on your temples, forehead, and the back of your neck when a headache strikes. He says it's the only thing that gives him some relief.
I'm probably missing acknowledging someone, but you all know it's not intentional! Just wanted to wish everyone a nice weekend. It seems like fall is finally coming around, and I'm looking forward to doing a bit of fall decorating.
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dlb... Never thought about that , but femera does list dizziness as one of its side effects . I wonder if anyone else has had that is a side effect and if it goes away over a period of time . Thanks so much for mentioning that to me because I hadn't thought about it
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Gracie, I have not had any dizzy spells but my Femara bottle has a BIG sticker on it saying may cause dizziness. Might definately be Femara.
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Thank you Deanna. I'm lucky it only lasted a couple days.
I've heard from others that have had their hip replaced say they regret waiting so long...
Have a wonderful weekend. My LAST wedding is today and then retirement! Woo hoo so excited. This wedding will be completely different than my Lake Superior wedding, but just as charming. Photos to come.
Amy
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Gracie,
I also have had vertigo for quite a few years, I believe it was a pre- menopausal symptom. And I think I have wonky middle ear stuff. I've been having it recently again, but I'm also dealing with sinus issues- which never helps. Over the years I've learned some tricks for dealing with it. Now my DD is experiencing it!
Anyway, I think you should let your MO know, but give him or her your past experiences.
I think ALL our meds list dizziness as a side effect!!
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good night all
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Wendy-great news!!! Happy dance time!!!!!
Amy looking forward to those pictures.
I've been a bit MIA lately. On Friday my office had it's inspection for Jt Commission accreditation and I was responsible so I was pretty crazy the last 2 weeks. All went well-the inspector told my boss that I was very thorough and organized-he should only know the truth!!!!!
Babs
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babs. Well done. A pat on the back is often hard to get at work. Glad to see you.
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Hi,
I have been a silent visitor when I joined this club in 10-13. I have been NED for over 2 yrs!! But I am tired, very tired now. I feel like this is a mountain I climb. Youll are climbing with me. I had tooth pain in July while I was on vacation with hubby. I finally went to new dentist in August. I had just had xrays like in June. He said I needed a root canal and we started that day. started antibiotics also and we spoke to my oncologist. I know Jaw necrosis is going off in that radio in my head. Then I came back I guess or think I was having more pain. It was the tooth next to it that was the bad one. I saw the infection on the xray. So dates are getting mixed up here. so then he worked on my teeth for a few hrs that day.
I was in horrible pain then, from the jaw being open so long. It took me a week to bounce back sort of from that. meanwhile left knee and left hip and neck get a little pissed from just a bit of yoga. I know its osteoporosis. the knees have revolted in past and I think I saw that on the MRI of knee. They get injections..
oh this is so long
tooth pain started again friday evening-of course. I am back on antibiotics. the pain is better from that. there isnt any swelling.
But I am just so run down, tired.
PS I dont like the aviator ...changed it when I was felling pissy...
I am on afinitor and aromosin and of course xgeva is being held right now.
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Fredntan, your body is going through a lot right now, so it is understandable for you to feel tired and run down. We take healing from infections for granted sometimes, but our bodies have to do a lot to heal from infections, even with the help of antibiotics. Pain also drains our energy. It sounds like you have had one thing after another, your teeth, pain from osteoporosis, not to mention that little thing called mbc, and it will take a while for you to get back your strength. On top of the physical issues, there is the emotional strain that comes with all that. Make sure you are continuing to eat nutritious foods. Try to get a little exercise, walking is good. Get enough sleep. You probably need a little more than usual to keep that healing process going. Take a nap if you have to. Give yourself time to recover. In the meantime, make sure your MO is aware of how run down you feel. She/he might want to do additional blood tests to check for anemia or thyroid function or other things. I see you are from nowhere man. Well, you are welcome here anytime.
Lynne
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We met with the Neurosurgeon, his plan is to have surgery in 6 wks time or less, if the scans don't show that the big lesions in the Brain are better. There are new lesions in the cerebellum, not a good thing, one they are Radiating now, and the other is in a very sensitive place, so they will watch it. But what shocked us, was that many of the lesions we thought were in the skull not in the Brain, the Neuro says it's Brain mets. So she's had Brain mets for awhile, just no one bother telling us. Now I gotta really feel comfortable with the whole idea. Surgeon seems very professional, excellent pedigree, but he's in his late 30's. Brain Surgery?? He is well regarded. They told us at first, that we could wait, and then radiate if it does not get smaller, but now surgeon says no, only surgery, they need to do resection and get a plastic surgeon to fix things. Hmm how we gonna get this one on the kids?
Anyway, the Pet/Ct came back with progression all the bones and the liver and the Brain. SO next day, Onco changed the treatment to IXEMPRA weekly. Herceptin every 3rd wk. And Xgeva. If she could stand this then they wanna add Xeloda. Have you ever heard of it? I checked the threads here, and there were only a couple of entries with Ixempra. It's been very rough on her, abdominal pain, nausea, loss of appetite, D had to have IV fluids. It's been grueling. She shows up to the weekly infusion, but after they give her the fluids, they still say she's gotta come back another day. The trip even, has been harsh. But we wanna continue on that, bcs she does need something strong to get rid of all these mets. Maybe, maybe something will give. It was devastating, again to hear that it's not going her way. She is very disenchanted at this time.
It's been very hard emotionally. Trying to hold the clan together. They are all trying their best. The sibs spent the weekend with her, literally to help with the kids and to just be there.
Someone should tell SilviaH not to worry about being a Debbie Downer, I took the crown for her. Sorry guys, but you've been there all along. And if you have any ideas, will take it.
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I have to address all of you. As I mentioned earlier I think, I have you guys with me all the time. When I am facing all the hardships I keep thinking what each one of you would say. And then, I push myself to act. Your support is just incredible. You make me laugh and cry.
Patty hey you are back, baby!! So happy for you. Keep up the energy, the kids will surely appreciate it. I hope your headaches subside real soon. I go through this, so I could imagine how it disrupts your life.
Zar sweetie, you nailed it. She resents every minute she is not with the kids. This Friday she had to have fluids plus the infusion, it took forever, and being that she did not schedule it, it was in the late pm, then she came home exhausted. Not the way she likes it.NO.
Carol we are with you, sorry it's such a shock after all these years. Thanks for checking in.
Annie, where have you been.
Faith I know. Thanks
Aurora so happy for you. Always hoping for good results.
Jen sweetie, I should be giving you support. Big hug.
Lindalou, I hear you.
Kaption I know thanks for the good vibes. Thanks in showing us the road to KS
Aww Amy, hugs right back at you.
LindaE I know about your warm heart, seriously whenever the Oncos start opening their mouth, I think back to this thread.
Kathryn I know thanks so much.
Moissy hey, you've helped so much, thanks
AnimalC such wonderful words.
Faith keep praying, thanks. Yes, to see their reaction to what their dear sister is going through it's just too much.
Wendy how is the situation with the Horses? So happy for the news.
Lynwood, Mary my hat is off to you.
Babs when I saw the note with the flowers, that was very special. Good for you. Thank you. And re: your outstanding work, of course did not expect any less.
Stefajoy you look like a wonderful mom too.
Lynne thank you. I know. Well my memory is way way behind someplace. I don't do small talk. I do take time to laugh a bit. Dani is not in a laughing mode these days, she is downright angry and exhausted from this charade that life threw at her. I cannot really think of myself now. I have been with her almost every day.
Gracie wow for what you have to go through. And what you had to witness. SO sorry.
Lita wow, that seems such a strong dosage. Feel well.
Louis so happy for you. What a big hurdle.
Deanna thanks for the link, will be checking her blog.
Kathryn what I do know is that your sugar levels could go crazy. It's odd this business of just doing PET and not PET/CT. I have read and read, and definitely it's a very well known fact that PET/CT gives you a type of info that either one separate do not. Sorry, but if you read up on it, you will find the info.
Lisa so sorry you have to be here. It's really tough to go through these news and then have to cope with a difficult private life. I hope you have support around you to help you with the kids also. We are here for you.
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Oh Momalltt. my heart hurts for you and your dear daughter and family with this latest news. My prayers are storming the heavens for all of you.
Faith (in the future)
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Momallthetime, thanks for the update but sorry that you all are having such a hard time right now! Your whole family are in my prayers, cancer certainly does effect the whole family. Sounds like you found a good surgeon , I think they would not do surgery if they did not expect some positive results from it . I feel so bad to hear of Dani being so exhausted, it truly is draining and can really mess with your head. Please keep us posted, I think of you all often. Please try to remember to take care of yourself too...hard I know when you are the one holding everything together. My prayers, like Faiths, will be storming the Heavens.
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Momallthetime, I'm here, been reading but not posting much. I'm so sorry to hear of what is going on with Dani, my heart just aches for all of you. I pray for your family all the time, wishing all of our prayers will be heard. I'm wrapping you both in gentle healing hugs. Thanks for updating us and you never cease to amaze me, addressing all of us with all you have going on.
I've lost my dear friend to this wretched disease, her funeral was on Saturday. I'm having a really hard time getting past it. The tears won't stop flowing and I will miss her terribly. This is so hard to handle some days but l know I can get through it with all of you by my side. Thanks for being here.
Love and hugs to all, Annie
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Momall,
Thank you for taking the time to update us, and then to address each of us individually. Goodness!
I'm crying for you and your family. Many, many prayers for a miracle and your continued strength. ((Hugs))
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Oh Mommallthetime I'm so sorry why can't your little girl catch a break😔 She is so lucky to have you there on her side looking out for her.i keep hoping she gets some good news . This disease can be so cruel and unfair hate it.
My horses are sold and I'm still heart broken. It's a small thing I know compared to what you all are going through so I try and pull up my big girl pants and stop whining about it. We all loose this with this disease it's about filling no that space with something you like just as much. The new owner loves her and is great she sends lots of pictures which makes me even sadder. But I try and count my blessings and enjoy what I have.
You and Dani are in my thoughts 😊
Wendy
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Mom, Thank you for letting us know how you and Dani are doing. I am sorry that Dani's new treatment plan is so difficult. I only hope that it works and brings the cancer cells under control. Please let us know if Dani needs to have surgery. In the meantime, you are in my prayers.
Annie, I am sorry for the loss of your friend. I wish I could make your pain go away. She was lucky to have you as such a good friend. I could tell you that she is at peace now, and that is true, but I know that does not lessen the pain you are feeling. Remember the good times you had together, the fun, the laughter, the long talks both serious and silly. Most of all, remember her smile.
Lynne
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Annie,
Ditto to Lynne's comments. Hold onto your memories of your friend. I'm so sorry for your pain. Many hugs!!
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Mommal - Geez, I'm at a loss for words. I think about you, Dani and your family very often. Mind boggling that the docs did not mention brain mets before! Dani is lucky to have you by her side every step of the way. And you still find time and the right words for us! Love, hugs and prayers for you both.
Annie, I'm so very sorry for the loss of your friend.
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Momma, You have all of us with you and Dani as you navigate different treatments and plans. Your support and love for Dani are pure examples of a mother's love.
Annie, It's so difficult to lose a dear friend. Big hug to you as you grieve her loss.
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