Bone Mets Thread
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Thanks Tina. Good to know.
I have been grumbling on the "My Husband, My Life..." Thread this morning. Just frustrated. If I have mechanical issues-- disc issues, rotator cuff issues, the bone mets pain, etc--- then I am just griping about taking a anti-depressant/ anti-anxiety med for the pain issues. Maybe they would help the chronic pain. Maybe I need them for the mental health. But, just kind of frustrated.
Anyone else on depressants/ anxiety meds for the purpose of chronic pain?
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S3K5—
Your just like me,,, when my pain was very bad I refused to take any thing stronger than Tylenol or Advil. Past few months my pain has subsided , but have you tried the lidocaine patches I asked my MO for a prescription, I got it. Didn’t really use it it other than once. But it Might help you. Also what helped me a bit was arnica cream. I ordered it from Amazon. It helps with pain. I hope you feel better.
I hope everyone is having a good day.
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I have found Celebrex (an Rx NSAID) to be helpful, although it has been a bit hard on my stomach. My Drs recommended Prilosec for that. Celebrex otherwise has had very few side effects for me. It also does a lot to help my quality of life and keeps me going as normally as possible. For now it's my "go to" and I take it twice a day to help the pain, and to prevent the pain from becoming too extreme or unmanageable.
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Hi Suzy - I am just now seeing your post from May 2020, so others may have responded about the skull met. I have one diagnosed Dec. 2019 and it is holding stable with Ibrance, Xgeva and Faslodex. No pain and wouldn’t know it was there except it shows on bone scan. I’m having another bone scan on January 18th, 2021 an will know more then. But I’ll take stable...hope you are too! ♥️ Sharware
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Oh, I do have a question for the group - I am stage IV with bone mets to skull, ribs, and spine and having pain in my pubic symphysis that received SBRT radiation in 2019. A PET scan showed it was gone in 2019....but now I’m having pain in the same area. Can the breast cancer come back in the bone where radiation was received? I’ll know soon whe I have my scan. But the pain I feel is the same as before radiation. Thanks, Sharware
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hi there, shareware, I had rads to one of my bone Mets and the RO told me it would be “less likely” to return in the same spot. I guess it is not impossible, though
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Thanks, Olma61 - I will let you know in a couple weeks. I’m also wondering if it could be arthritis. Walking is okay but going up and down stairs causes the bone pain. I’ve read that Xgeva could cause bone pain too so it is hard to know until I get scan results. Fingers are crossed - thanksyour reply is good info. ♥️
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you’re most welcome! Not only the Xgeva, but also the hormone therapy can give us achy bones and joints. I am crossing my fingers for you, too.
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thank you NicoleRod...I just can’t get peace about Zometa. I think one it goes in there is no taking out back out. How are you doing without it? So far I have been just fine...hope it continues.
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Hi everyone, I got my results back from my CT scan I had done last week. I had a follow up appt for next Tuesday with my MO but his nurse called me today that he wants to see me sooner. That’s usually bad news. I had a minor panic attack after hanging up with the nurse. Then I logged into patient portal to read report for myself. Good news is no organ involvement, bad news is seems I have an increased number of lyric lesions throughout my chest, abdomen and pelvis. And now I have a new lesion on my sternum that was not there before. I’m disappointed, I have been off Ibrance for past 2 months because my hemoglobin was so low. My hemoglobin is back to normal so I’m hoping to get back on Ibrance which is what MO will probably tell me tomorrow. Anyways. Thanks for listenin
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Hopfull2...I'm so sorry. But hopefully you can get back on Ibrance or something else that will help. You're in my thoughts and prayers.
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Hopfull2, I hope your doctors have some ideas. Keep us posted on how your visit goes, if you can. ((Hugs))
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Hi everyone, do I had a video call with my MO. I will be starting Verzenio. 150mg twice a day. I will continue on letrezole, zolpidex (1 x a month). And Zometa (1x every 3 months. ). Anyone here on verzenio. How are your side effects. Any tips? Thank you guys.
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There’s a great thread on Verzenio with some tips. I have significant diarrhea on Verzenio, but I also have colitis (from before cancer). Verzenio is the first drug I’ve tried and, so far, I’ve had a very good response with many mets disappearing
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Hopefull2: I see you are on Zoladex. Did you consider asking if you can take zoladex every 3 months, same day as your zometa? I have no problem taking the higher does of Zoladex. It makes it a lot easier then running back and forth to the hospital on a monthly basis, especially now with Covid.
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tinkerbell1–. No. I didn’t know u can have zolidex every 3 months. I go next week for zolidex and Zometa. I will message my MO to ask him. Thank yo
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Ladies,
Thank you for all of your kind words and taking the time to reach out. Sorry my late reply. Started treatment on Monday and just reading through all of the threads has brought a lot of comfort. I feel good. I’m so thankful for this forum
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Hopeful- I am on verzenio and have done very well with it. I've been on it a year now at the 150 mg BID dose. I would second recommending the Verzenio thread, there's a group of us over there and it's been very helpful. There have also been a couple of recent studies that were released recently with very positive results on Verzenio. It can be a little rough on the GI tract.
Candy 678- I have been on Wellbutrin 150mg since my metastatic diagnosis. The thought was that the norepinephrine reuptake in a few studies showed improvement with cancer-related fatigue. I didn't really find that to be the case and it didn't really help with my pain. I was recently switched to Cymbalta. I did six days at the 30 mg dose and pulled myself off of it. I felt like a zombie. Again it didn't really help with my pain but I felt like my entire brain was numbed out. I found myself one day absently staring at the wall and I couldn't remember how long I'd been there or what I had been thinking about. I quit the next day. I understand that there is often a depression component to chronic pain but I have pushed back against my docs when they try to keep prescribing anxiety/antidepressants for pain because I am sensitive to them and I haven't noticed that they decrease my pain levels. I may ask about Celebrex. I've been trying to get by on Tylenol and Aleve but it doesn't always work on my bad days.
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emac877- That is what I fear, like your Cymbalta experience. I live alone. I do not want to be a zombie, "staring at the wall and couldn't remember how long I'd been there". Scary. I could be in danger, living alone with no one else in the house to monitor me. I do not want a personality changing drug to help with my aches and pains. I just want pain relief.
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Candy- I live alone too and that can be scary. I can always call someone for help but sometimes the living alone thing can be a challenge for sure. I was with it enough to know that it was changing my personality and that sitting and staring into space was odd for me. I don't think I was checked out like that for hours but I definitely felt stoned, most noticeably by my fourth or fifth day on it. I was numbed enough that by day 6 I didn't feel comfortable driving and would not have felt comfortable going to work. The good news is that it took about a week to get to that point but it also has a half life of roughly 12 hours so after quitting I was feeling better within a day.
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Hi all,
I have been posting off and on this thread over the past 6 years. At times I was very active. Lately, I read and private message people when I think I can be helpful. I am now going to ask for help. I am working on year 7 of my metastatic dx and I am on my 6th treatment and first infusion chemo. (Abraxane). I do feel I have had good luck with this disease and I have seen too many people from this community die an early death.
I don't fear death and don't think it's imminent, but it s closer than it was a year ago. I am trying to find a way to share this information with beloved cousins who live far away and I have limited contact with. Since covid we share a text string. And I was hoping to share some info there so everyone gets it at the same time.
What do people think and how do people talk about changes in prognosis?
Thank you for any thoughts,
Mary
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Just found this thread. Thank you. Was also just diagnosed today with stage 4 MBC with bone nets through out my spine and 2 in my pelvis.
radiation and chemo start next week so I have no details or experience to share just my fears and willingness to listen and learn from youThank you in advance for your help and support
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ChathamLady,
Welcome. There are a lot of knowledgeable people on this thread, and so you should be able to get a lot of good info and support from all. Also folks talk about different treatments and how they fared on each. I think you'll find it helpful.
I grew up in Morris and Essex County (now living in Maryland) and I remember Chatham as a lovely little area.
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Mary, So good to "see" you here and to hear that its been going well. I don't have tips on telling people anything, never learned to do that cleverly, but I would like to point out that there are new options you might not have tried yet- for example the antibody conjugated chemo drugs like Enhertu or Trodelvy with a PFS around 16-17 months for patients who have had on average 6-7 lines of prior treatment, can;t really tell what you;ve tried so far
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Chathamlady, sorry you find yourself here, part of the club nobody wants to join. As BevJen indicated, you will find lots of support here. As as many questions as come to mind. We may not be able to answer them all but will do our best. I would also encourage you to fill out your history as it really helps us to point you in the right direction.
Mary, I am not sure I can help with messaging as well. I have been very open about my diagnosis since the beginning but I find that few people actually get it. And the problem is, we all move inexorably towards a change in our prognosis but it’s still pretty uncertain until we are very close. I would say you should share the diagnosis if you are comfortable. If they ask more you can elaborate. Hope this is helpful. As Cure-ious indicated, it’s hard to tell what treatments you have had. You may have a number still in your MO’s bag of tricks.
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Thanks Sadie servant, and Cure-ious,
For the record I have been on an AI then an AI plus affinitor, xeloda, verzenio, lynparza, Piqray and now Abraxane. I started with mets in my bones in 2014 and they did not show up in my liver till 2020.
So Cure-ious I have not heard of those options I will make sure to talk to my MO about them. Sadie thanks for the support. I think the hardest part of talking to more distant relatives is that though they know I have metastatic CA. They don't need all the details. I think I just don't know what I need to know yet. Thanks for helping me figure that out.
Chatham lady welcome here, there is lots of info, knowledge and support here.
Peace everyone,
Mary
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Chatham lady,,,
Sorry you have to be here. But as everyone has said,, lots of info here and there is a thread on pretty much every topic that will help you out. 😊.
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Thank you for your welcome and support
Can’t sleep. First appt with MO and RO tomorrow. Not sure what to expect I’m part of the 5% de novo. Yay! Bone Mets in spine and pelvis. Had lumpectomy to remove primary. How do I add info to my signature
I’m so just over the top scared. Trying to get things in order. Talking to a minister tomorrow. Never been a hopeful person.
Worried about side effects, pain, etc. I have 2 new grandkids 800 miles away that I just want to set and play with
Will stop dumping now.
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ChathamLady- I guess all our screens look the same---- go to the top of the page, where it shows the person (where you sign out). An option says My Profile. Click that. Then the tab that says My Diagnosis. Click that. Then My Treatment. Click that. I hope this helps. If not, just say so and we will try again.
I am thinking of you as you go to your appts. Keep us informed and ask any questions you have. Nothing off limits.
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Thinking of you, Chatham. This will get better. When the news is "new", it seems unbearable. But many, many of us are doing quite well and living relatively normal lives. Chin up!
Sending hugs-
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