Bone Mets Thread
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BevJen,
I maybe felt a little something in my pelvis but it wasn't something I would say was intense pain, it was bothersome after sitting too much. At 55 everything hurts a little, I have been a runner for 40 years. I will say the week after rads I felt some discomfort and fatigue, that lifted fairly rapidly and now I feel well and the ache when sitting too much seems to be gone. I opted to radiate in order to get a little more time on Afinitor/Aromasin. I find the protocol easy and for the most part it is keeping me stable. I blew right through the Ibrance/Faslodex, I don't think it was 6 months. Trying to avoid Piqray.
My MO didn't seem to panicked regarding the CEA climb, in fact she mentioned something about colon cancer... I about flipped. It will be interesting to see if the numbers come down in August when there has been more time between rads and my blood draw. Will keep you posted.
I am in a funk today. Some days are harder than others to deal with the unknowns of this disease...
Best,
Stacey
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Stacey,
Thanks for the additional info. As I said, I'm meeting with a radiation oncologist next week to have her look comprehensively at my more recent scans to see if there's anything there that could/should be radiated. I belong to the whack-a-mole club and like to get rid of what I can.
Not good news about the colon cancer stuff, but I have a colonoscopy set up for next month (I have to have them every 5 years because of an early precancerous polyp in my colon a number of years ago) so if there's something there, guess we'll catch it pretty soon.
As for the unknowns of this disease, yes, it does create not only uncertainty but also fear and some depression. The other day, I was thinking about how it sucks to live from scan to scan, blood pull to blood pull, never knowing if your next "event" will bring bad news. It is very tough to deal with.
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Thank you, Stacey. Mine fluctuates between 6.0 and 7.1. It’s been up the last two times, but that’s about where it hovers. Yours was quite a bit higher. I hope it keeps coming down for you.
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I’ve gone ahead and scheduled the bone biopsy for August 6th. I hope it tells me something, anything at this point. I’m tired of not knowing.
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KBL— hoping you get your answers after the bone biopsy.
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Stacey and BevJen and KBL, I do understand your feelings. My CEA this month has gone up after being stable for couple months, 27-29 from 45 jumped to 170, I am scared and confused, what I've done, medications aren't working, what if lab results were wrong, why MO never ordered pet scans etc. too tired to react/ study/ research on what is going on, staying in bed. scans scheduled for mondaynext week, I hope the results won't surprise me...
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Thank you, DodgersGirl. I’ll keep you posted.
Julia, I understand the fear. I’ll be thinking about you during your scans.
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Cross posting:
I was wondering if anyone here has had a bone biopsy while on Ibrance. I'll be talking to my doctor on Monday to see what she says about being on it during a bone biopsy. My numbers are always low. Last month I was at .86, but she said to go ahead. I'm on my week off now, so I would be in the middle of my second week if I was okayed to start on this coming Monday, or if I had to hold one week, I would start back on August 3rd.
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Julia,
Thinking good thoughts for you. I'm hoping that your scan next Monday is stable and that there is another explanation for your numbers.
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Julia- sending hope and prayers your way during this time and praying for best possible outcome on your scans. I understand your anxiety and your fear. It’s really a way our bodies try to protect us from worst possible outcome while at the same time it consumes us. I go to a counselor who has given me some great “coping” techniques and they all take practice and time.....but I know the fear and anxiety will still be there, It’s just I can keep going in spite if it and it doesn’t overwhelm me. Being a Christian, I also pray often to surrender those burdens of fear and anxiety to God as He asks us to do, knowing I cannot do anything with them, but He can.
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Hi hopeandgratitude, I looked up some techniques online, found them useful. Thank you so much for that and your supporting words
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I have a question for those of you with multiple bone mets. My largest is in my right hip and I have a few small ones in the spine. I have been having increasing pain in my right hip and have a rod in it so other than xrays a bone scan is the only imaging that won't show a lot of artifact so I got that done today and it shows that the right hip is actually improved but apparently I now have progression in my right iliac crest and a fairly large area in my left tibia. My spine mets are stable. I am scheduled for xrays tomorrow on the left tibia. How long did your mets stay stable? I was initially diagnosed with bone mets in December of '19. I've been on Verzenio since January, and also take the Faslodex and Xgeva. I imagine my med schedule will now change. This was sort of a blow to find out about. I have no pain, I wouldn't even have known they were there had I not had the bone scan. I'm a little freaked out that I've had a progression in less than a year while taking the Verzenio, Xgeva and Faslodex.
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Hello to everyone!
Really just posting here to provide some info to anyone who is interested. This morning, I had a video visit with my old radiation oncologist from my first cancer rodeo in 2003-2004. I met with her so that she could take a look at my scans over the past year and tell me what she saw and if she had any recommendations. The one takeaway that I wanted to pass along is that I had not, prior to this time, had an MRI of my spine, which is where my bone metastases are located. I also have arthritis (or, as she politely called it, degenerative disease) mixed in with diffuse sclerotic metastases. So she ordered an MRI of my spine, stating that that would give the best picture of what's really going on with the bone disease.
I know that imaging is an issue with bone metastases, but I was happy that she had another suggestion for imaging to get a better look.
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BevJen, hope you get clearer images and answers with the MRI.
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BevJen - Totally agree with you. I had Pet scans and then followed up with MRI twice of thoracic and lumbar spine to better understand what was going on. Right now, my mets are limited to my spine. It's helped to provide a much clearer picture. Thank you for bringing that forward.
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BevJen, please keep me posted on MRI. I had two a few weeks back, and they are the only thing that show lesions on my spine. I have never officially been diagnosed with bone mets, only in my stomach as of now,so I’m not sure if it’s cancer. I have bone biopsy set for August 6th. I would be very curious to hear what you find out.
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KBL,
Will do. One thing I can tell you is that I've now had three docs tell me (including the one today) that if you have bone marrow mets, and you are responding to treatment, the result may be sclerotic mets. That is all that I have, supposedly -- sclerotic mets.
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Thank you, BevJen. It looks like sclerotic can either mean healing or thickening? I'm interested to know what they say for you. I appreciate it.
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BevJen,
Thank you for sharing this! I will suggest an MRI vs Nuclear Bone Scan next time.
Stacey
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KBL, a CT showed my T11 lesion as "lytic" last year. The latest MRI of my spine showed improvement. My MO said that the lesion will always be there but that it is no longer lytic. He said that it is more like a callous, so perhaps that is another understanding for the "thickening" definition of sclerotic.
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Thank you, cyathea. You’d think these reports could be written so we can understand them at some point. Unfortunately, that will never happen.
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emac877,
I was diagnosed with bone mets in March 2018, they were basically everywhere. I'm triple positive and after chemo ended, I am still on Herceptin, Perjeta, Zolodex and Xgeva, my mets have been stable since September 2018. Everybody is different though, so I guess I'm not much help.
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Peaches - Thank you, I appreciate anyone's experience. It's helpful. I still feel like a newbie to this and even though we have different experiences it helps to know how others are handling it.
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KBL How high is your Ferritin now? I started last year, 6/19 with it being normal at 128. Now it’s 718
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Tinkerbell1, Do you remember your ferritin level.?
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My ferritin level was 328. MO didn't seem concerned for the other iron studies are within normal range. Plus MO mentioned for folks that are post menopause (I receive zoladex inj.) ferritin levels most likely will be over 200+.
GinnyO2, What is your MO recommending as the plan?
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Ginny02, mine this last time was 259. It’s been above 200 since I had it checked in 2016, and it’s gone up each time I’ve had it checked. I’ve only had it checked once a year. Please keep me posted on what you find out. I’m post-menopausal and all of my other iron levels are within normal range as well.
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I’m having my bone biopsy tomorrow. I’ve just about convinced myself that the biopsy is going to come back negative and be a benign process. I will hopefully get an answer to what the lesions in my spine have been since 2013.
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KBL,
Good luck with the bone biopsy, and hope it turns out well.
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Thank you, BevJen!
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