Bone Mets Thread
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Hello ladies....I had my 3 round of Halaven today....was off for 8 days...and felt great...for once....in a long time...Yesterday April 1 was my 1 yr since being dx....Haven't had se that much...some shortness of breath...now on a inhaler...I get light headed...and feel tired...I live alone...so my mind gets paranoid because I don't know what to expect from this treatment....
My OC talked to me about Palliative care...Got me a little scared...which I am....***TEARS***
Just need some feed back on se halaven...and what you think of Palliative Care...
Carla
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Carla, I think different places may use the term pallative care and people perceive the word pallative in different ways. At UCLA, it includes pain & SE management (or comfort management), and does not neccessarily imply end-of-life care, although it can encompass that because some patients will be in that situation. I remember being a bit shocked when they introduced me to a pallative care doc/pain specialist @ UCLA when my pain was still out of control shortly after I was dx'd, so I totally get how upsetting it must be for you, and I feel really bad that it made you cry. But I have a feeling in your situation it just means your onc wants a doc -- a pallative care doc -- to follow your more closely than he can while your on Halavan, to be sure any SEs you have are caught early and handled quickly, so that you don't end up in the ER. (((Hugs))), and hang in there! Deanna
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Carla - I would agree with Deanna. I had the same reaction - WTH (what the heck)??? I'm not ready for hospice! Then it was explained that it's a broad term. I kind of hate it, but it is what it is. I'm sure someone will chime in about your meds and SEs.
Deanna - WHOO HOOOOOOOOO!!!!!!!!!!!!!! Love that you're stable. Best news I've had all day! All week even!
Patty gets second best news of the week! Glad they're finally figuring it out and praying for a quick fix for you.
Well, back to packing the horrific rental truck. It's steering and gear box are quite loose, so it's a bit of an adventure to drive.
I'll see how my pics of Carpe Diem and her hubby turned out and if they're good, may try to post them tonight.
Hugs to all, sorry for anyone I've missed!
Terre
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Deanna, Fantastic news!! So happy for you.
Patty, I hope they figure it out this time, sounds promising.
Carla, Glad to see you are feeling a bit better. Don't let the term "palliative care" bother you, it means ongoing pain & treatment management. But the first time it was said to me, I had the same feeling that you did!
KCM, hope you & Carpe decide to post pics, we "need" to live vicariously!
Good luck with your move.Hope everyone else is doing well. I worked way too much in the garden, I'm hurting today, but I took a couple of pain meds & shortly I'm going to add a little glass of vino to the mix! Cheers!! Dee
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Deanna, I'm so happy to hear your good news! Stable is awesome and I bet you feel a weight lifted off of you. Enjoy the weekend!
Carla, I struggled with the term palliative care and my nurse practitioner said it means helping people with cancer to live well and addressing any and all aspects of that from pain management to helping with anything we need to make things easier. She told me they've seen patients weekly for years and it doesn't just mean end of life care. It brought me down at first too but now I understand what palliative means and I view it in a more positive light.
Terre, good luck with the move! Praying for everything to go smoothly for you and dh.
Hugs to all, Annie
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Great news Deanna! Happy for you
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Wonderful news, Deanna. May stability grace your life for a very long time to come
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will stay at least 1 more night at hospital. Really really hoping to get home and not have to comeback.
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y Ok. Here's is my new scary look. No makeup or hair fixed in like forever. Think I am getting lazy 0 -
Patty, you actually look wonderful! MUCH better than I was imagining, considering what you've been through!!! (((Hugs)))
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see thanks dlb
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You look great Patty, especially considering what you've been through..... now I'm wondering just how gorgeous you are when you're not in the hospital???? Me with no make up & not having done my hair, now that's scary!!
Hope they've finally got you cured. Cheers, Dee0 -
I think you look great too, Patty. That's awesome, like Deanna's "stable" condition.
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My TM went up 20, so the onc ordered a PET scan for next week. If I change drugs, it will be a low dose chemo drug that starts with a 'Z' or 'X'. I'll have to look it up. So I decided to just trust her because I surely don't know what to do. Then she starts pushing me to take prilosec, and PPIs cause all kinds of problems that cancer patients in particular don't need happening. I told her I take the ibuprofen and other pain meds with food, but she still wants me to take the PPI. I'm not doing it, and it undercut any trust I attempted to give her. Oh well. Maybe she's right about the other stuff. Ha ha.
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Carla, the palliative care comment upset me too, but I have since learned that at this point it means pain management. I'm good with that.
Terre I'm glad you were able to spend some quality time with Carpe. It was Carpe Diem, right?
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Dealing with hip pain? I really don't like the drowsy feeling of the hydrocodone the doctor prescribed. Does anyone have any non-drug tricks they use to lessen the ache of hip bone metastasis. I tried 3 Advils, but no luck. Heat, ice, Epsom salts, accupuncture? What relieves your intermittent bone pain?
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kkdanville, This isn't a non-drug suggestion but my onco suggested for bone pain to take a tylenol & an advil. I find that this works well for my hip & upper arm mets. I wasn't getting any relief from tylenol 3's they were making me sick & I didn't want to take anything stronger. I haven't tried acupuncture because the combo of OTC has worked well when I needed it, which isn't too often. GG
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kk, one of the first meds I was given was Ibuprofen 600 mg., which is a 1 pill RX vs. taking 3 of the OTC tablets, although they're probably equivalent. I also had an RX for Lidocaine patches which helped some, along with an oversized heating pad. Now my pain med of choice when needed is acetaminophen+codeine 3. It doesn't make me sick to my stomach or drowsy like other narco meds do.
For me one of the biggest helps has been learning not to overdo. If my back even starts to hurt, I stop what I'm doing, go home if I'm out, sit down and put my feet up. I've learned not to push myself to the point that it gets really bad. Also, as you may already know, whatever pain meds you're on need to be taken on schedule. If you wait until the pain returns, you will end up "chasing the pain," which is not as effective as preventing it.
I also use a curcumin supplement and 10,000 IUs of D3 which mostly help my joint pain but probably also help bone pain by counteracting inflammation and facilitating bone regrowth.
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dlb - so curium does it for you. Would be worth a try I my side. I hate taking all these pain meds Did you get it at the health food store or walmart
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Patty - you look great! You look better on a bad day than I do on a good day.
Fingers crossed you get to go home and stay out of hospital!Hopefully she won't be mad, but here's Carpe Diem and her husband at the Wellington waterfront. It was a bit windy (per usual).
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Some kittens to make your day happier (I hope). This is Itchybod (left) and Ritz. Ritz is the one rescued form the drug house. His nose is healed up and he's just a snuggle bunny!
!
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OMG the kittens are so adorable! Thank you for posting, it always makes my day when you post pics from the Kitten Inn. Lovely to see a picture of Carpe Diem. Cheers, Dee
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Here's a couple more Dee. Also going to post some in the fun thread!
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thanks for posting carpe diem pic. It is always good to "see"!whom Iam talking too. Helps out faced to names
I am still in the hospital. So love to listen about everyone living it up to their max potential instated of being stuck at the hodpital. Y'all give me hope of returning back to some sorta life even if this life has permanently changed.
Hope everyone is having a good day today.
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Patty, wow considering what you have been through you look awesome! I'm praying everyday for you to be out of that hospital. I hope that happens real soon. Have things improved at all?
Terre, oh I love the kitten pics, thanks for posting them. At the end of the day I bet you're wishing you could take them all home, I know that's how I would be. What a beautiful picture of carpe diem and her husband!
Hugs to all, Annie
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patty, I hope you continue to get better and leave that hospital very soon!
KCM, thank you for the pic of Carpe Diem and her dh. I love hearing about people's travels. The kittens are so precious. I love the sound of their "baby" mewing.
Time for a cut and color today and then helping my younger dd and SIL get ready to host a sedar tonight. I'm purchasing roast chickens, but will make carrot tsimmes, a traditional braised carrot dish (in the Ashkenazi tradition). Happy Easter, Passover or just have a lovely weekend .
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Carla, as others have said, palliative care is a broad term for care that is meant to keep patients comfortable physically and emotionally. It is used at my cancer care center to categorize care that is not "curative." I first saw that designation when I had to sign a consent form to receive Xgeva injections. There were just two boxes, "palliative" and "curative" and since right now Stage IV bc with bone mets is considered incurable, we get the palliative tag. It felt like a kick in the gut to see that, but it doesn't mean much except they're focused on keeping us as symptom - free and pain -free as possible. So don't let it scare you. Just consider it another resource in your arsenal to keep you going and to have a decent quality of life.
Happy Easter/Passover/weekend to everyone.
Sharon
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going home today s soon as they finalize a mountain size load of paper work. Will have a rx for everything that had helped since I've been in. Treating Cancer isnd side effects are not cheap. As we all already know. May stay alive but financially ruin my family. Uh no not doing that. Sorry rambling. Decisions like that are best decided when it happens instead of ruining my day from now Til then.
Love to "see" what everyone is up too. Again thanks for the support from all not sure how I would have handled it alone.
Hootie hoo
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Like Patty said, it's so nice to put a face with a name, so thank you, Terre, for sharing the lovely photo of carpe_diem and her DH exuding such a relaxed, vacation vibe in that gorgeous harbor setting! It's great that the two of you could meet up! And thanks for the adorable kitty photos! It would break my heart to have to go home and leave them in a shelter, but Itchybod and Ritz are so cute, chances seem high they'll get adopted quickly.
Happy Passover-Easter weekend to everyone! So nice that the holidays coincide this year. And so happy to just see you're going home today, Patty! Hooray! And try not to think about finances today. It'll all work out. Big hugs to you and everyone, Deanna
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This thread is always so busy and I know I am not really a part of it but I do try and pop in every once and awhile to see how you all are doing. Just want to say Happy Easter and/or Happy Passover or just happy weekend to everyone!
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