Bone Mets Thread
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Everyone, is it possible to get the addresses of everyone? There must be someway we can privately do this. I would like to send holiday cards and things like that. You ladies are very important to me. It just wouldn't seem right to leave you out of my holiday traditions.
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Awww Chelle what a thoughtful idea. I'm in
Amy
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Chelle, about addresses... if it would be helpful, I have a contact list for members of this thread. To date, I have 19 of us on it. If you or anyone else who posts regularly would like to be added, please PM me your contact information. The list only is available to those who participate. The purpose of the list was to make it possible to get in touch with someone outside of BCO, but not everyone has given me a mailing address. Some have only provided emails and/or phone numbers. Anyway, just thought I'd let you and any other newer members know about it. You are all welcome to participate. If you have already sent me some information but would like to add a mailing address, now would be a good time, so that I can keep the updates/revisions and distributing to a minimum. Deanna
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You are absolutely right!! That is exactly what I was told yesterday. I am starting Ivarance and Femara. Dana Farber was amazing to me yesterday. Now I have to get the pain in thigh hips under control and ribs. I working on changing insurance so I can be under their care. Thank you. I am slowly learning who everyone is and read all posts and include you in my prayers. God Bless. Also going vegan. Need to understand that now. Ty.
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Good morning, everyone.
Lovesmaltese, I am happy to hear that you had a good experience at DF. I felt much better about things once I knew that I was on a treatment plan. I hope you feel the same way. Many people are seeing good results with Ibrance and Femara. Let us know how things are going for you or if you have questions. Once the Ibrance and Femara begin to kick in, you will probably find that the pain starts to decrease.
Cristina, I have to agree with everyone else. That sounds like a very long time to drive by yourself. I would not attempt it alone. Even on shorter trips it is easy to experience pain and/or stiffness. I would worry that you will find yourself stranded, unable to continue part way through the drive. I do think it is a great idea for you to spend time with your sisters. The train ride sounds like a good solution if it is available.
Valerie, How are you doing? Let us know your test results.
Ellelou, I hope that your onc will be able to explain the results in detail so you can understand them better. Things can be so confusing with all these tests and scans.
Rachel, Did you have the transfusion? Are you feeling better?
Rushjackson, How are you holding up? I know that you are in the scariest phase of the disease, the "what happens next phase". It is easy to think that every little twinge of pain or discomfort is cancer spreading. Our imaginations can run wild, but reality is usually much better than our crazy thoughts. I hope the results of your PET Scan shows nothing but bone mets. No matter what happens,there is treatment available. Btw, my bone scan showed that I have bone mets pretty much from my neck to my ankles, and I look pretty darn healthy, too. I also feel good. Keep us informed about your results.
Lynn
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Christina--I am in NC. I would be happy to help. Figure out a plan for transportation. PM me if interested. You are going through so much. Hugs.
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What a crazy train this whole mets thing is! Just as mom was preparing for her last day of rads, she saw the rad onc and he's recommended more rads - this time to both hips and the arm that she just started having pain in a few days ago! The fact that the hospital is almost 2 hours away has made this especially difficult and very expensive. We got her a hotel room for all of last week and this week and now it looks like we'll have to do it again. She says she can drive herself, but that's just nuts! Just not sure how we're going to be able to keep paying for hotel rooms for another 2 weeks.
I'm concerned that this rad onc, whom she only met recently, is sending her for rads where she's only had pain for a few days. Her regular onc, who we trust more than anything, always has her wait 2 weeks before making a move as she has always had pains that come and go but don't warrant rads. I want her to be pain-free, but I worry he's being a little quick with the rads -- especially without consulting with the onc she's been with for 14 years.
Anyhoo, have any of you taken Dilaudid for pain? He prescribed it for her today and we know nothing about it. Up until now she's only taken Advil and the odd Tylenol 3, which made her sick and didn't help.
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Wow, GoldenGirls, I had the same reaction you did to the quick recommendation for rads, because so many times with mets we get odd pains that come and go, sometimes without explanation. I would absolutely want a rationale as to the need for rads based on scans or an MRI.
And Dilaudid is a HUGE jump from Advil and Tylenol! It's something like 100x stronger than morphine. I've only had it once -- in the ER, when I was truly in excruciating pain with a fractured femur & pelvis -- and it literally sent me into orbit -- I was so out of it (and hated it). My son has had it on two different occasions in the ER for severe kidney stone attacks that had him literally writhing on the floor in pain (and he has an extremely high pain tolerance). Of course we don't know the dose your Mom's doc has RX'd, but it seems like a strange leap from Advil to me. JMO.
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The search button isn't working for some reason!! But Here is a question and I probably posted it in the wrong thread but Dana Farber wants me to start on Zometa and Oncologist here rather I did Xgeva. What is the difference and why would one help more than the other with bone strength? Thanks
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Goldengirls - Rad Onc made a quick decision. I would run that through my Onc and wait a while. As for Dilaudid, I take it regularly. I have the extended release form (every 12 hours) and breakthrough pain. I started out on a low dosage and increased until my pain level was comfortable. I tolerate it very well except for constipation issues. I felt a bit sleepy the first few days and then my system adjusted to it. Now I have no SEs and can drive and lead a normal life. It worked wonders for me but everybody reacts differently.
Loves - both bone strengtheners are good. Xgeva is a newer drug given as an injection and the other is an infusion. Xgeva is much more expensive, at least here. I had Aredia (equivalent of Zometa) for 2 years and am now switching to Xgeva.
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I may have mentioned before that this rad onc and his nurse are VERY dramatic and negative. Everything is so over-the-top with them. Until this pain from the fracture in the sacrum started my mom hadn't even been taking Advil and was still very active. They lectured her about being pain-free for "what time she has left" and talked over us when we explained that, instead telling us how painful and "serious" metastatic cancer is and how "it will only get worse". Very frustrating. My mother's mets as of last scan were still just in the bones and showing stable, so the fact that they spoke to her like she was on death's door really blew my mind! They don't listen and it seems like these decisions are being made by someone who is not actually considering her situation and the fact that at this point there's no indication that the end is near.
My mom's English isn't great and she doesn't like to question doctors at all. I think a call to her regular onc is in order before this next round of rads starts. If she got rads for every ache and pain she had then she'd be living at the hospital!
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good evening friends. I've not logged on in awhile because I have just felt too miserable. I've missed you guys. Too lazy to go back and catch up so I'll just jump back in now.
I see several new names. How exciting. Hello all. Hugs all round.
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Welcome home Patty. I'm very sorry things are tough right now. I'll pray you feel better soon. It's just so nice to see you again.
Amy
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Hey Patty, so nice to hear from you but I'm sad to hear you've been feeling miserable. You surely have been missed around here let me tell you. That's because we all love you. I'm sending you healing hugs and energy and praying that whatever is making you feel this way will end soon. I hope you'll keep checking in and let us know how you're doing. Big hugs to you, Annie
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Patty, we've missed you a bunch! I hope the break from meds you mentioned on another thread (the "patty thread") gives you some renewed energy, and maybe a new and better game plan going forward. You know I'm praying for you and your family every day, and hate to hear that you're still struggling! Big hugs!!!
Thanks to those of you who sent me your contact info' in the past day. I have updated the list but will hold off sending it out to everyone for a day or two until I'm sure everyone who wants to be on it has given me their info. Updating it isn't a big deal, but re-sending it each time to 20+ ppl is a bit tedious, so I'd like to get as many updates as possible in before I send it out again. So... once again... if you would like to be on the list so that we can track you down if you don't check in for too long... or send you some encouragement during a rough patch, or a Christmas card... I need your contact info!
Linda, interesting about the time release Dilaudid. That sounds like a very different dose than what I've encountered, as I could not have stood up, no less walked or driven when I got it in the ER. I'm glad to learn it's helped you so much!
Lovesmaltese, on the Zometa vs. Xgeva question, I would ask each of the oncs why they are recommending the one they are over the other.
Valerie, any update? I'm concerned about you! Deanna
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Welcome back Patty! We always love to hear from you, good news or bad news.
Deanna - thank you for the list. It's very appreciated and useful. The extended release is called Hydromorph contin.
Valerie - I hope your scan went well and hope to hear from you soon.
Rachel - are you feeling better post transfusion?
Good day to all and sending hugs all around
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Linda, I too am on ZoHydroER, I had no idea it was dilaudid. I thought it was extended release hydrocodone without acetaminophen. I am on the lowest dose and it works well for me.
Have a good day all, Patty, nice to hear from you, please be well.
Myra
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Welcome back Patty I guess I'm one of the newbies that has joined the ranks. I wish that you will feel better soon. Wendy
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good morning wonderful ladies. Lad some of all have posted so I can catcbup with y'all.
Hoping for pain free day for all. Hugs all around
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Hi Patty! So glad to see you here again! I'm sorry you have been feeling miserable, I'm going through that a lot.
Valerie- Please check in when you can! That is so scary and worrisome! I missed what happned, but sounds like you had an accident and hit your head? I do hope you are feeling better and no more scary news. I'm sending good vibes out.
Ladies, I'll be looking up a train schedule. Of course you all make sense. Duh. I never even thought of taking a train. I don't want to reduce my work schedule right now bc my husband doesn't have steady work and I don't want to take an income hit in October/November with the holidays around. Perhaps January I will discuss a 4 day week. For now, I just use paid time off and extended sick leave to take days off. Averages out to 2-3 days per month, so almost like I"m already working 4 days per week.
Who posted about their mom's dramatic radiation oncologist? No way would I deal w that nonsense. Get an opinion from your onc and go home. Why jump into rads so quickly? Ridiculous. Maybe it's warranted but give the pain some time at least! I would think of getting another rad onc to be honest.
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cjanet - sorry you are having such a hard time also. I can't even imagine trying to go to work. You must be one strong woman.
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Hello all. I've been lurking here for the last month and thought it was time I finally joined in the conversation. You all have been so helpful to me with your posts here, a huge help! I hope that one day I can return the favor. I'm rooting for all of you and hope you all have a peaceful fall weekend.
Tammy
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Tammy - glad your stopped lurking and jumped in. Welcome to this thread!
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Yes, welcome, Tammy! And I'm sure you will pay it forward when you are a little further along in the journey. Looks like you were very recently dx'd. How are you doing?
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Welcome Tammy! Good luck with your treatment!
Patty, so glad that you are spirited again!
Christina, admire you surviving all of this!
All, happy painless Friday!
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Patty, so happy you are posting again! Hope the docs get you feeling better soon! Welcome Tammy! You will learn more from these wonderful ladies then any onc can ever tell you!
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Cristina - when I read your posts I always cry. YOU NEED a good hug. It's so great you could look forward to see your sis and it's so wonderful just to think that they could make it so much better. YOU ARE SO LUCKY!! My daughter has that too, with her sisters and it's truly priceless. Go for it. Enjoy every minute!! Your hubby will be with your little one? Sorry you have such a hard time at home, it's really crappy.
Goldengirls, you are so right. Radiologist should not jump on Radiation, they are so conservative with Dani, there are many issues, it could weaken the bones, the system and they really leave it for when it's dangerous to not do it, (like impeding on a nerve) or very painful. Dialudid is a miracle drug, the way we have experience. Long realease, like Linda said.
Love Zometa is chosen for Dani bcs it's an infusion. I wonder which is easier on the body.
Patty so glad you are around us.
Deanna, hope you see results soon
have a calm weekend, everyone.
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Tammy, Welcome to the bone mets thread. Since you have been lurking for a while, I am sure you have noticed how helpful and supportive everyone here is. I am still real relatively new here, too, so I still learn more than I contribute. The first few weeks and months after dx are the hardest. How is your treatment going? I hope you are tolerating it well.
Patty, I am happy that you are back? I have heard wonderful things about you. Everyone has missed you, as you know.
Cristina, I am glad that you are looking into train schedules. It seems like a good plan. It will be so wonderful for you and your sisters to spend some time together.
Valerie,We haven't heard from you since your accident. Are you okay?
I hope everyone enjoys the weekend it is cold here.
Lynne
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Tammy. - welcome. So glad you joined in. Just jump on in with something. Someone here will be able to relate.
Hugs all around.
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Aurora, We haven't heard from you for a while. Is your recovery from surgery going smoothly?
Lynne
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