Bone Mets Thread
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Hi All!
Welcome Tammy!
Patty, glad to see you're back, we've been so worried. Hope you're doing ok. (Hugs)
It was a beautiful fall week here on the west coast. Got out in the garden quite a bit. The rads has helped my back a bit, though it's hard to tell when you do too much gardening!
Hope everyone has a good weekend. Cheers, Dee
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Hello ladies, been feeling pretty darn good for a couple of weeks now. Keeping my head out of those dark places. Settling into my new normal. Same person, just more appreciative and a little lazier. My family does a lot for me. I actually have time to relax. I cannot ever remember, not having things waiting for me to get done. My new normal,is in some ways less stressful. Crazy as that sounds. I have learned to not sweat the small stuff. I hope to hear from Valerie soon! Aurora as well, got to be a tough recovery! Any one heard from Dune? Welcome Tammy! You and I were dx one day apart. I hope everyone has a great weekend Hugs, Chelle
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Hello to all,
Tammy, welcome but sorry you have reason to be here. I lurked for awhile before I jumped in too but I'm so happy I did. This is a group of amazing, supportive and knowledgeable women.
Dee, you amaze me with the amount of physical labour you do! I haven't done much gardening in awhile but dh has gotten really good at it, I do help him as much as I can.
Today was my pamidronate infusion so I'm hoping I don't react like I did the last time, which was worse than the very first time I had it. MO can't figure it out but if I have the same reaction they will switch me to Xgeva. Going to keep hydrating, take a tylenol and head to bed.
Dune, how have you been feeling? I know you're on a chemo break so hoping you're out having fun.
Aurora, how are you doing? Haven't heard from you since you had the surgery. Sending healing vibes your way.
Valerie, we're all very concerned. Praying everything is ok.
Patty, I love seeing you back here!
Hugs to all of you, Annie
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Hi everyone and thank you for keeping me in your thoughts I'm out of the hospital ( they moved me today) I'm in te rehab facility I"be never be in one and I'm kind of creeped out I feel like I'm in an old peoples home. Prayers for me to adapt and make progres
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Annie - my mother started with pamidronate when first dx with mets and after a few infusions they had to switch her to zometa because of the side effects. With each infusion the side effects seems to get worse. It started with flu-like symptoms and bone pain for a couple of days following the infusion and eventually the symptoms would last over a week. She tried everything that people suggested to make it easier, but it didn't seem to help. OHIP wouldn't cover zometa so her onc sent a request to the drug maker to cover the cost. She's had no problems since.
Most women seem to tolerate it better than she did, but I have spoken to a couple on here who also had to switch.
I hope the next infusion is easier on you.
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auroaya, so good to hear from you and know you've been moved to rehab. I'm sure it is a bit creepy, but it's temporary, and a step towards getting home, which you will be so glad to see when you can be there safely!
Annie, fingers crossed that today's infusion doesn't cause any SEs!
So good to see you posting, Patty!
Have a great weekend, everyone -- even if that means not doing much except giving yourself all the rest & TLC you need right now! And Valerie, Dune and anyone else hasn't checked in for a few days, let us know how you're doing!
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Aurora, I second what Deanna said! I'm so happy to hear from you and that you're on your way to recovery. Praying hard for you to heal quickly, big hugs to you!
GoldenGirls, thank you for sharing your mom's experience with me. Strange thing is I had pamidronate for 6 months without a problem after my very first one. Then my onc moved them to every 8 weeks and I continued to do very well except for the one I had in August. I was terribly fluish and achy, every bone in my body hurt for almost 4 days. So we'll see what the morning brings, I sure hope I don't have a reaction this time.
Hugs to all, Annie
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Chelle - so good to hear you're feeling good! That's what we want to hear.
Dee - Yes, you are amazing.
Annie - hoping this time will be easier. Take it easy and rest well.
Aurora - so glad to hear from you. It must feel odd to be there, but soon you will be in the comfort of your home. Prayers for speedy recovery and healing. You must be so happy that this is now behind you.
Good week-end to all
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Patty, hello from a newbie. Glad to meet you.
Karen
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Aurora, glad you're on the mend, but the rehab place must be a bit of a culture shock, hope you get out of there quickly!
Annie, fingers crossed for your infusion. I seem to have some that knock me on my butt for the weekend, but others are just fine. My infusions are all about the same length of time, so I'm no help to you at all, other than best wishes & hugs!
I thought I'd take a couple of pictures in the garden today & post them. The first picture is a brugmansia or angel's trumpet. The second picture is a big rhodo in the back that after this years drought, I was pretty sure it was dead, but it came back with a bit of rain & it's now blooming.
I hope everyone is doing ok, have a lovely weekend all. (hugs to those who need them) Cheers, Dee
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Dee, beautiful pictures! Nice to see the fruits of your labor. Annie, I have only had one infusion which I suffered terrible se. Very nervous for the next one. It was zometa. So I understand you apprehension. i still have two kids at home, I hate for them to see me so sick, but nothing can be done about it. Just another horrible reality for my family to face. Dh youngest dd and I are taking a little day trip tomorrow. We are going to the opposite side of town to buy dd some English riding breeches, helmet ,boots,crop! You'd think in Colorado that I could find this stuff anywhere. Nope, only western riding gear. Should be a nice day out with some of my loves. Sleep well my lovely ladies, hugs to all. Chelle
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Hi all,
Back from the conference in Rotorua, with friends (from the US) in tow. They stayed with us a couple of days and we took them to catch the ferry to the south island this afternoon. So I'm way behind.
Welcome to new people - sorry for the reason you're here, but glad you found us.
Patty -welcome back.
Aurora - that must be a shock to be in a rehab facility, but I'm glad you're out of hospital. I'm sure you'll be home before you know it!
I had pamidronate infusions until I developed ONJ. And I had the same effects, Golden - every month was worse and worse. I'd definitely get a second opinion, at least from the MO, before starting rads. Hate the Dr Drooms of the profession.
Annie - good luck with the infusion
Dee - stunning pictures! Just fantastic!
cjanet - sending you a huge hug.
I know there are other people I should be responding to and may I just take this moment to say that I really hate being this brain fogged all the time. Oh well.. Has anyone heard from Dune?
Sending hugs to all,
Terre
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Hi Tammy, I am new here too and found out I have bone mets this week. I was a lurker on here since July and I know each and everyone of the girls in this thread as I followed them for so long. It took way too long for them to confirm my mets so I had such hope that it was not going to be what it is. With that being said, every night before bed each and everyone of you were in my prayers. I have not started the full treatment yet as I am waiting for the Ibrance to arrive but did the femara last night. I wanted to reach out to each of you and tell you that for the most part I know you and your journey. I especially pay attention to the sweet daughter who posts for her mom, it has touched my heart so much. I love the positive attitude you have taught me to have. I hope everyone has a fun weekend. I am still in a lot of pain, not exactly sure if I have some fractures or not but this week scans should give me some insight. Hugs to all. Carol0
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Good morning to all,
Well other than my normal morning achiness and stiff body so far so good after yesterday's infusion. We'll see how the day plays out once I start doing things but so far no headache or all over bone pain. I hope my reaction with August's infusion was just a fluke.
Dee, love the pictures and it makes me long for Spring already and we still have a long harsh winter ahead. Dh cut back all of our perennials and every flower has died due to the change in temp so no color in our gardens. The trees are so colorful though and have managed to hang on to most of their leaves so far. I can see you have a love for gardening and definitely a green thumb! Cheers to you Dee!
Chelle, I totally understand what you're saying about having to be sick around our children, for me it's one of the hardest parts of this terrible disease. I know my girls cry about it privately and it breaks my heart. Enjoy your day with all the loves in your life!
Terre, welcome back and how nice you had friends stay with you. You must be exhausted so rest up this weekend. So sorry you had to experience ONJ from the pamidronate infusions, what a horrible side effect! I think that's why my MO changed mine to every 8 weeks after the first 6 months because of the possibility of ONJ and also because she said it actually stays in your system for a very long time.
Carol, you will definitely notice your pain improving once your treatment kicks in. I thought I would never feel better but by the third month of being on femara my tumor markers dropped by half and my pain was virtually gone. I think most of the pain I experience now is arthritic pain from the femara and I take Celebrex to help with that. How sweet of you to have gotten to know each and every one of us before you joined our group. I'm sorry you had to join us but this is an amazing group of women. Sending positive thoughts that you do not have fractures and for your treatment to be very successful!
Hugs to all of you, Annie
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Good Morning all. Dune posted a quick note on the Ibrance thread. She seemed fine, I think. Myra
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Good morning Myra, how are you doing? Thanks for letting us know about Dune and tell her that her peeps are missing her! How's your beautiful granddaughter doing?
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Good morning ladies. I am feeling MUCH better ! This is my 2nd week off Ibrance - to increase labs - and also 2nd week of increased thyroid meds. Not sure which is working but I def am on the mend. I have been so encouraged by all the support I received from my bco friends. Funny how mental health can hugely impact physical health. Hate that I took a break from bco and pretty much all friends. Easy to get in a dark hole. But much much better now.
Lovesmaltes / Carol. - welcome. Glad you decided to jump in. Wow you are very newly dx and sound pretty good. I remember being in total shock for awhile
Love life \ tammy. - Hi if you are still lurking , jump on in
Deanna - tight hugs. Didn't u also take a break from Ibrance at one point?
Lindae - have a great weekend. Thinking of your thoughtfulness often. 😀
Orlandoan \ Karen - Hi ! Thanks for introducing yourself. Nice to meet you.
Terre - glad you returned home safely
Dune - hello out there. Miss ya. Hope you are doing well
Annie - glad you are having a better day after infusion day.
Auroaya. - prayers for you to adapt and progress.
Hi to all missed. My fingers are starting to not do what my brain says. Think I'll take a break. Bbl
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Good morning Annie, my gorgeous grand daughter gets cuter everyday and more alert thank you for asking. Glad you are not feeling as bad from your infusion. My Xgeva shot had me down for a good week. SEs seem to last that long. 3 weeks good, one week bad. Yesterday got the flu shot, no problem except slightly sore arm.
For someone who took no meds, I feel like a walking pin cushion. Oh well, the new normal?
Hugs to all. Dee, your garden is gorgeous. I live in a condo, no garden per se, we have beautiful grounds and at least an herb garden. I think maybe I'll get some potted plants. Myra
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dee. - your garden is beautiful. You must spend abkot of time taking care of it. Take it easy on your back. A little at a time
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Myra I am also scheduled for xgeva shot. Not looking forward to that now!! How often do you have them? I can do either that one or Zometa. By reading up on them looks like both can make you feel ill.
Patty- every time I put on peppermint oil to help with my ribs I think of you.
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I've been lurking here for a couple of weeks trying to get up to speed on this topic. I have found it's a very busy place and jumping in isn't easy to do. I don't have anything to add just my support and gratitude for the wealth of information. I had L2 kyphoplasty on Wednesday and took Chemo in Thursday. Thursday was the pits, I was horribly painful and nauseated from anesthesia. Friday was much better though. Today, I find myself 100% pain free with nearly a full range of motion. Incredible the difference a few days makes. I am beginning to reconsider if radiation will really be necessary. I went from not being able to dress myself to walking three miles in the woods today.
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Good morning all, including all the newbies! Hate to see you here, but glad you are. You will find support when you need it & a cheering section when you don't!
Thanks for the compliments on the garden, it's a labour of love, it rarely feels like work to me.
Chelle, the first infusion is definitely the worst. I swore that sometime in the night a truck had run over me. Like you I was terrified to have another, but they have gotten much better. Every once in a while I have one that will knock me down but nothing like that first one. I've had them for 17 months now.
Patty, glad you're feeling better. I wish we could get Ibrance here in Canada. They are having trials but it's not available outside the trial.
Glad that Myra let us know that Dune is ok.
DH & I volunteer at the little thrift shop here, dealing with all the donated books & we haven't been in for about a week. It's going to be a bit of a nightmare, so I'll see you all later! Cheers, Dee
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Hi Lovesmsltese, I get the shot in my stomach every month. Drink lots of water. For me it varies from month to month. This one was one of the bad ones. Not debilitating, but very annoying. Myra
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Maine, thank you for posting, welcome! Wow, that's fast, huge, and very impressive improvement by the treatment! Very happy for you!
Carol, don't be afraid of Xgeva kind of drug. Most women can tolerate it. It will help you a lot over time.
Auroaya, speedy recovery!
Valerie, how are ya?
Happy for all who feel better and wish all a good weekend!
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Lovesmates,
I get my Xgeva shot in the stomach and I honestly don't think I notice any side effects from it. Obviously everyone is different with their reactions but none for me. Hopefully you will be fine.
Good luck
Amy
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thank you Amy I hope I'm like you!!
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I also get an Xgeva shot every 4 weeks. I've only had a reaction one time, no problems any other time. Dee, my husband also loves to garden.. He says it's his relaxation . Your garden is beautiful! Here it is almost November and my poor husband is still out there trying to keep his flowers alive! When I tell him it's time to shut it down until next year, he got annoyed so now I just watch him putter around out there.
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Beautiful garden, Dee!
Welcome, MaineRottweilers! Your recovery from surgery is nothing short of remarkable! Thanks for jumping in and sharing how well you're doing!
I also hope to start Xgeva soon. What encouraged me is a patient I was chatting with in the lab at my local onc's office. She told me she was there for her Prolia (same thing as Xgeva) shot, and when I asked her if she had any SEs from it, she looked at my quizzically, and said, "No, should I? Do you know something I don't? Maybe I should read up on it." LOL, sometimes I really think it can be better not to know what could happen!
I just returned from a 2 mile walk. YaY for me. It took me 45 mins -- so more like a stroll -- but I'm so happy I could do it.
Hope everyone is having a good weekend. We're going to a progressive dinner tonight. Should be fun. Have to remember to take my Ibrance pill with me so that I can take it on a full stomach. Deanna
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Hello, dearest friends Deanna, Linda, Chelle, Xavo, Annie, Lynn, cjanet, Hydranne, Sue, LovesM, Wendy, and everyone else, the news is good, thank goodness! I was very sedated for the CAT scan (my future mother-in-law drove me to the hospital) and because I was so frightened, I think the sedative kicked in even more than ever before. I slept all Thursday afternoon, Friday, and Saturday. Even though they said the results would be in on Monday or Tuesday, my oncologist's nurse called late yesterday afternoon and left a voicemail. She said my onc received the results and found no indication of a skull fracture, or of any brain damage!! I am only just now coming to my MacBook, and you are the first I'm writing to. The pain is less now, and bearable, but knowing it's not what it could have been has calmed me. Even so, I'm still coming down from that frightening high. All of you have been so unbelievingly caring and I'm so sorry to have worried you so. Thank you from the bottom of my heart. I was so hysterical that I needed to reach out instantly, and you were all there for me. I would love to have a cup of tea together with all of you! Maybe we could choose a time that fits in with all of our schedules, all the way around the world, and sit at our keyboards with a cup of tea, together? I am so grateful for you!
With love,
Valerie xo
This is the view out on the balcony off my bedroom right now, as I write.
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Valerie, I am relieved to hear your good news. We were all worried because we hadn't heard from you. It is nice. To know that you were sleeping peacefully. Take it easy for a while. Your body has gone through so much lately, and you need to be pampered now. Meeting on our keyboards for tea sounds like a WONDERFUL idea. Count me in!
Deanna, congratulations for your two mile walk. I have begun to get back to walking. (I took a break after my dh's pulmonary embolism.). I am trying to increase my distance each day, but it has been downright cold here for the past several mornings.
Welcome MaineRottweilers. I am glad that you decided to join us. It's great that you are feeling so well already. As I am sure you have noticed during your lurking days, there are many amazing, helpful, supportive people on this thread.
Carol, I hope that your Xgeva shots cause you no discomfort or se's.
Patty, It is good to hear that you are feeling better. I agree that mental health can go a long way to making us feel better.
Dee, Thank you for sharing the pictures of your garden. It is beautiful. We have already had a hard freeze here, so my flowers are gone. I still have to go out there and cut back the last of my perennials. I really enjoy gardening, and love to see the perennials pop up through the cold ground every spring.
Aurora, I have been praying for you and hope you recover and find freedom from pain quickly. It must seem strange and somewhat uncomfortable for you to be in the rehab center with a population that is so predominantly elderly. If it is anything like the rehab center where my mother-in-law is, you will soon be stopped by a friendly, perhaps lonely, elderly resident/patient who wants to talk your ear off. My experience is that they gravitate towards younger people, perhaps because the younger people can hear so much better that the old ones. At any rate, follow the instructions of your physical therapists, and get well soon. We are all pulling for you.
Hi to everyone else I have missed.
Lynne
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