Bone Mets Thread
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I remember how scared and in pain I was in the beginning, Radiation helped tremendously and it's relatively easy.
I'm a few years in now and almost back to completely normal. My hair never grew back but I don't mind, don't worry, I don't think that's very common. It's actually nice now that I'm used to it, doesn't take long to get ready and it's great in the summer
Welcome to the club nobody wants to be in, hang in there, it does get better.
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for those folks who are on bone strengtheners (zometa, Xgeva) -- an interesting report out of the National Cancer Institute --
https://www.cancer.gov/news-events/cancer-currents...
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Great article, BevJen. Thank you for sharing that. I printed out the "handout" with the Zometa info to give to my periodontist. I think I'll send this one to her, too. I see her every three months for cleanings and exams. I've become much more faithful and using my electric toothbrush and flossing lately. At my last appointment, the hygienist was thrilled at how my gums looked! I think in 3 months I only missed abut 3 days of flossing - a record for me.
I get my Zometa infusion every month, and I just had my 9th infusion this week. So far, so good. I hope it stays that way.
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BevJen- interesting article. Thanks!
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BevJen - Thanks for sharing the article on ONJ. I received Xgeva injections monthly for only 6-7 months and now I have ONJ on top jaw as well as lower jaw. I had never heard of this condition before and no one told me it could happen before I was given Xgeva. I bet the numbers are a lot higher than stated in the article.
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Hello. New here in Stage IV. Just got scan results this week. Apparently, it is very bad and it is everywhere. Why didn't I notice it? I was achy and thought I had pulled a muscle. But it definitely got more achy the last 2 months. So prior to that, I felt achy but didn't think it was bone mets. As you know, here I am wondering if I could've done something about this earlier.
Doc said 3-4 years. I'm wondering if he is being too optimistic.
Should I ask for a brain and lung scan? But if brain is involved, it will be a lot faster, I assume.
Funny/Not Funny ... I immediately started to feel more achy and notice all the points in my body where it aches -- now that I've been told what I have. Sigh.
Thanks for sharing and posting.
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Cute, your onc had NO BUSINESS telling you how much time you have! He has no idea, and neither do you. Many of us here are doing quite well and are living relatively normal lives. Hang in there, girl...you don't have enough information yet. Please post your status and treatment so that all of us an be most effective in responding to your thoughts and questions. Look at nkb's post, two above yours, and you'll see what I'm talking about. I personally am 4 years out from Stage IV and doing quite well. Good luck, my friend, we're all with you!
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Cute- You, and we, need more info. You said "it is everywhere". Bones? Organs? Has your doc said what treatment you are starting on? Is it driven by estrogen? You need more info. But.... there are a lot of us living with bone mets. Me with it 3 years. You see Joyner above with it 4 years. I have a local friend with bone mets for 8 years.
What testing have they done so far? PET? Most docs will do a baseline brain scan to make sure not in the brain, then recheck only if neurologic symptoms.
Post what info you know so far.
But, don't give up. We can help you get some answers.
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Cute,
So sorry for your stage IV diagnosis, but we are all here for you.
Like Lynn (JoynerL) I cannot believe that your doc said that to you. Didn't know that a medical degree makes you a prophet. Please don't let that get you down. Although most of my mets started showing up in 2019, I have been metastatic since 2006 when I had my first metastasis to a polyp on my cervix. There are many, many treatments and you will see, if you read through these various threads, many of us cycle through many of them. Some people hit on a good one and can go years on it (I was on letrozole only from 2006 until 2019).
So, hang in there, and ask questions, if you are so inclined.
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Cute00, what’s your pathology say ER/PR + or - and HER2?
Definitely ask for a brain MRI, for baseline as mentioned.
Your MO cannot predict the future, none of us can but I’ll say that I’ve been stage IV for over 4 years with brain mets for more than 3. Currently I’m doing very well. Anything is possible.
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Cute, I’m sorry you find yourself here. I went six years undiagnosed bone mets and mets to my stomach, all de novo, with no primary found. I’m still here, heading into my ninth year and feel pretty good.
I’ve never had a brain MRI and wasn’t ever even offered one. I also have ILC, which tends to spread to other weird places, hence my stomach mets.
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Cute —- sorry you are going through this. I know the beginning is horrifying. Your thoughts start going into very dark places. But,, you will get through this. Like many of the other ladies said once your on treatment your life will go back to normal. Hugs. Stay strong n positive
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cute00, big hugs. Its a shock for sure. I had many the same feelings you described: at first I had some pain, and then worse pain. Once I found out how extensive the cancer was I hurt even more.
As others have said, I do agree that speculating about timeline is not helpful now. You are just beginning your MBC treatment, so it's too soon to start thinking about the end yet. There are just too many factors for anyone to accurately predict the course of this disease: our individual cancers, how well we respond to treatment are two big ones. And besides that there are new treatments being approved every year. It's not the end.
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buttonmachine, JoynerL, candy-678, BevJen, illimae, KBL, & Hopfull2: Thank you, thank you, thank you!!! Sending a big (((hug))) for your replies to cute00 - I'm also dealing with progression at this time and your words are encouraging and inspirational...love you all for being here! ❤️
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Katrose, I LOVE this:
Life isn't about waiting for the storm to pass...It's about learning to dance in the rain.
I'm going to commit that to memory...... and try to commit it to life!
Tell us more. How can we help?
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Hi JoynerL,
I saw that quote on a wood plaque at TJ Max just after being diagnosed with ILC in 2009, so purchased it and hung it in my family room - I thought it was so appropriate as well as positive!
I was diagnosed in June of 2020 w/mets to bone and placed on Ibrance & letrozole; however, my TMs continued to rise. I was then changed to Ibrance & fulvestrant, but again my TMs continued to rise. My most recent PET on 01/20/21 showed progression of my bones mets and lesions in my liver. An MRI abdomen was done this Wednesday and the results showed 2-3 liver lesions, largest 1 cm and several 2-3 mm "spots." My MO said he needed further clarification as to whether or not this was definitive for cancer. My liquid blood biopsy showed Pik3ca positive, so I'm being switched from Ibrance to Piqray and will continue the fulvestrant. I've just been on the Piqray thread and the side effects are numerous, but there was an encouraging post by Jobur that said she was able to manage the Piqray and still have a good quality of life...so I'm hopeful that this drug is doable and will work for me.
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Katrose, I remember there being a discussion about the possibility of doing a biopsy of a liver lesion. I'm only on a handful of strings, so it must have been this one or the xeloda string. I wonder if that would be a possibility for you? It surely would be helpful to know exactly what you're dealing with. Good luck, my dear!
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Thanks JoynerL - MO's say their too small to biopsy...but thanks for suggesting it.
Wishing you the best also!
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I am about to have my first stereotactic radiosurgery to a bone met in my spine, I believe others have had this procedure - any words of wisdom about preparing or recovering from it? I'm slightly anxious about the fracture risk, even though it is small.
Cute00, I was diagnosed with Stage IV just this month, and it is incredibly scary. Sending you lots of supportive thoughts.
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hi sfcakes, I had EBRT to my spine in 2019. I have recovered fine, no ill effects , no fracturesand the lesion is healed. The worst thing about it was having to show up every day for two weeks, but I think SBRT is fewer sessions.
I drove myself but I did have my family come to the set up appts and the first couple of sessions just in case. I went out, walked and exercised lightly after every session. I did feel more fatigue during and after, so staying a bit active helped me fight that.
The only weird thing I recall is I got a rash on the palms of my hands during the treatment. My primary doc prescribed steroid cream. Doctors said may not have been or probably wasn’t related but I think it was either a reaction or that the treatment made me susceptible to bacteria or irritation. Anyway, it wasn’t too terrible and the rash started healing as soon as I got the prescription.
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here’s a thread I started to ask about rads to spine Mets back then
https://community.breastcancer.org/forum/8/topics/871507?page=1#post_54063350 -
Olma61- Thank you for sharing your experience, and for the link to that thread, that's very helpful! This community has already helped me so much, I am soooo glad I found you all.
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SF - where are they radiating? I had my sacrum done for five SBRT sessions and made sure I had Immodium on hand at home (needed it too! but only for a few days) given where they were focusing the radiation. Other than that I didn't have any issues, it took care of the problem and its healed. I did feel a little grotty, but I had just been diagnosed and was a real mess, so that was probably more the overall cancer than the radiation effects. Some women have pain resolution right away, but mine took a while.
They did give me cream to put on in case of burning, so I did that, but it was such a small area and for so short a time it wasn't a problem.
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Yes, they did recommend aquaphor in case the skin at the site felt burned or itchy, etc - but like Sondra said, it is such a small area that it was not a problem, unlike when people are getting whole breast rads.
And yes, the digestive issues are a caution if you are near those organs. Mine was to the L1 vertebrae.
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I had SBRT this past November. It involved a couple of setup sessions and then 5 radiation sessions which took less than 60 seconds each. This was on my periclavicular node which was slightly enlarged and showed some uptake on a PET scan.. I had no side effects of any kind, but perhaps that was because there was nothing close by that could have caused trouble. I just had my follow-up pet scan and hoped, perhaps unrealisticly, that the node been blasted into oblivion. However, the scan showed that it was smaller and had less uptake. I don't meet with my oncologist until Thursday, but I'll find out then what her expectations were.
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My tx will be in my upper-middle back, T9 and possibly T10 (MRI only shows T9, bone scan "suggests" T10, unclear about usefulness of bone scans but oh well). My doctor said I might experience difficulty swallowing for a while, due to proximity to the esophagus. I had this side effect when I had radiation to my chest wall, it went away in a few days so hopefully this will be the same. I was slathering on the aquaphor at that time, and was able to get away with some minimal skin peeling.
JoynerL, I think I have the same expectations (eg, blasted into oblivion)! I will talk to my doctor about that in more detail.
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Katrose, hugs right back atcha. I've loved the help and support from all of the ladies here. It's a great group trying to help each other out.
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SF-cakes. I also had SBRT to my spine - my L2 - three years ago. Prior to SBRT, I’d had pain that came on quite suddenly. I had only 1 treatment, I barfed immediately afterwards but had no other immediate ill-effects, and the treatment was successful. I’ve had no further spinal progression since. I have, however, suffered a compression fracture following the SBRT. It has caused a slight impingement on the nerve which at times causes a bit of an ache but it’s totally been manageable with the occasional ibuprofen and/or heat pad (I also use my seat heater in the car all year round! haha) And, I am still active - hiking miles at a time, walking my dog, swimming, snow-shoeing etc. The more I move, the better my back feels! My doctor has said that the compression fracture is unlikely to ever heal itself since much of my vertebrae was destroyed by the cancer and the SBRT so they monitor it for further degradation and can shore it up with “cement” if ever needed. But, as I said, 3 years on and I’ve had no further spinal progression. I’d do it again if need be. I have also shrunk a half inch in height. 😀 I hope I haven’t scared you rather I wanted to share my overallpositive outcome despite the compression fracture. Good luck!
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Margarita, first, I love your name. My first chemo nurse was Margarita and I LOVED her. Second, I had palliative radiation to my hip, spine and femur. The radiation significantly reduced the pain in my hip. I think I had about 10 sessions to my hip/femur and 3 to my spine.
I had no side effects, fortunately.
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Thank you MargaritaMS for sharing about your experience with a fracture, that helps me a lot actually and I feel less worried about the treatment. Thanks to everyone who responded!
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