Bone Mets Thread
Comments
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BevJen, I’m so sorry you’re stuck there. I hope a competent doctor comes up with the answer. It’s just ridiculous when a cause can’t be found for pain.
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Just a quick update that I have a Mag3 renogram on Thursday and possible cystoscopy and stent placement on Friday.
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Wow BevJen,
I'm so sorry to hear that you are continuing to have so much pain and to hear about the new liver mets. The only bright side is it seems you have their attention so hopefully they will get to the bottom of this issue soon! Sending gentle hugs.
KBL, hoping for good results to get you back on track too!
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DITTO on all, BevJen and KBL!
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BevJen so glad the people who saw you at the clinic realized this wasn't something to just send you home with. I hope your pain is being relieved now with the iv self control pump.
KBL, sounds like things are moving forward.
I might get out of bed today. I've promised myself I can go right back if I need to. Yesterday was still crazy bone pain
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Nicole...the results sound pretty good. Keeping you in my prayers.
KBL, BevJen, moth, Candy...keeping you all in my prayers.
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Bev...oh my goodness I didn't know your pain was that bad.... wow I am so so sorry. I hope you feel much better soon and they figure out what the heck is going on there with your pain and back.
I can totally relate to all the pain you are all feeling...I still have PAIN pretty bad in my liver when I breathe and if I try to get a deep breathe well forget it. BAD PAIN...so I understand ladies...Next thursday will be 4 months out for me from the Y90
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I agree with Nicole when she says that we want to hear what everyone's going through in dealing with mbc. We're here to support one another. And in telling our stories, others learn. Here is the place to lay it all out on the line.
Nicole, you're right, being off 4 months of all treatment and having minimal progression is very impressive! I hope you benefit further from the Afinitor/Faslodex combo.
Moth, BevJen, Nicole and KBL, I'm sorry to hear of the the pain you're all experiencing. As Sadie says, hopefully with the attention of the medical professionals you will all be able to find relief for the pain. Thinking of all of you.
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Hello everyone, new here, to Bone Mets. I had the tumour marker numbers last week but I didn't write it down thinking I'll remember. Now I don't remember. Oh well. Anyways, dropped in to say Hi and Im sorry to see that you're all suffering but also glad to see that we're here. (If you know what I mean)
Edited/Adding:
I guess I should go get some numbers and info. I don't even know what to ask. So I'll go google around and find out what numbers I should get from the Doc. I mean, with the numbers, I'll be able to tell more definitively if the meds work or not, etc etc. I guess I'm still in the shock stage and don't really want to think about anything. (I'm in the "I want to get everything in order" and "I've got no time" stage. But I see that we don't just die right away, and I can see lots of you and in the other threads live a looong time! So that is hopeful. Thanks for sharing. I bounce between "I got no time" and "There is time" multiple times a day. I'm sure you all understand.)
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Hello Newday, I'm relatively new here too, and completely relate to the bounce between "I have no time/there is time". My doctor doesn't use tumor markers, said she finds them unreliable, so it's interesting how different oncologists have different approaches. I've had SBRT to tumor in T9 on my spine, but I can still feel it, so not certain yet if that "worked", I know it takes a while.
Sending love to Moth, BevJen, Nicole, and KBL as well. Want your pain to be relieved and any new/change in treatments to kick this disease back to the curb for you.
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Hi Newday. Welcome to the thread although I am very sorry you find yourself here. As SF-cakes indicated, tumour markers are a bit hit and miss. For some people they are super reliable indicators but for others, myself included, meh - not so much. My MO relies on scans and how I am feeling. This is my fifth year of MBC so it seems to be working.
It will take time for you to get to a place where you feel, not exactly comfortable but more able to live a more or less normal life. Like you I thought I was a goner when I presented with a long full of fluid but still here, still working, etc. As you can see, there are many, particularly bone only, who have been doing well for a very long time. It will all get easier when you have a treatment plan in place. In the meantime, ask anything. This is a pretty supportive bunch and if one doesn’t have an answer others will. And we’re also here if you just need a shoulder.
Sending a virtual hug. Pat.
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I am posting here and on the Verzenio thread.
$12,379.05 - that is the monthly cost of Verzenio 100mg. My co-pay is $50, but I arranged with Lilly to have the same person call me every month after I get my blood test results and ask me questions. By doing this, Lilly is paying my co-pay for at least a year! They ask if they can contact my oncologist, and I always say, "No." She runs the entire Oncology dept. and sees me as a favor because her nurse practitioner didn't read the bone scan comments carefully and thought I had regular breast cancer. I was therefore accidentally given one round of chemo when I was first diagnosed. I lost my hair, but now a year later it has grown back! I love my oncologist and I have it written in my file that I will never see the nurse practitioner, so I don't want Lilly pestering my oncologist.
I hope your insurance is helping you with the costs of procedures and prescriptions. I started with Ibrance, and my white blood cell count got so low after 3 months and lots of lowering the Ibrance dosage that my oncologist switched me to Verzenio. It has worked out wonderfully for me. My WBC was 4.0 last month. Here is the healthy range: White Blood Cell Count 3.4-10.8%.
I also take Letrozole. I have stage 4 MBC, and am currently immensely lucky because my 6 bone mets (in the usual places) have been inactive for a year. I try to live a happy and stress free life. I do often need an afternoon nap from 3-5 hours, but other than that, I feel healthy.
I don't know the phone number for Lilly to apply for this program, but you might start with this:"Lilly Cares" Phone:
Monday–Friday8 a.m. to 6 p.m. ET
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Ok long post coming---
I have had pain in my left shoulder for literally over 3 years. In 2017, before the cancer diagnosis, I was told I had a small partial rotator cuff tear. I was getting physical therapy when I was diagnosed with the cancer. Life stopped. PT stopped. Priorities. The pain has continued, and worsened lately. So today I went to local ortho doc. X-ray shows possible bone tumors, possible avascular necrosis, possible stress fracture. MRI pending insurance approval. I messaged my MO nurse. Can they review x-rays or MRI for their oncology take on this? They will not review x-rays, but will review the MRI when it is done says the MO nurse. I asked about an oncology orthopedist---- they don't have one. HUM. A NCI/NCCN cancer center with no ortho oncologist. HUM.
Read avascular necrosis (if that is what it is) can be from bisphosphonates-- Xgeva--, like ONJ.
I feel my MO is missing my bone mets seriousness. I have posted here before that she concentrates on the liver, with CT's and MRI's of the abdomen, and does not monitor the bone mets. Last bone scan May 2020 didn't show much uptake, so are bone scans a good indicator for me? Last PET was Sept 2019.
I am frustrated.
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I WOULD BE, TOO!!!
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Candy, they won't review the xrays?!? That's ridiculous, what about collegiality and doing what's best for patients. I think getting another PET scan is a good idea, I personally think the bone scans are too vague. Your whole body needs attention, I know the liver is very important and serious to follow up on, but so are bones! Argh, I'm frustrated for you.
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Candy, it is frustrating. Can you get a second oncologist to look at the X-Rays?
Actually, my current MO monitors the liver too but has referred me to the radiation oncologist (RO) for the bone mets. They both talk to each other and come up with the next treatment plan. My MO orders only PET scan every 3 months (or less) and the RO orders the MRI of the spine. I also see an interventional radiologist for local treatments of the liver. If there is any risk of nerve impingement due to spine mets, then I am referred to the Neurologist. I don't get bone scans at all since they are not 100% accurate.
Could you ask for a referral to the Radiation oncologist at your cancer center? The regular orthopedic doctor will not treat us if it is cancer related. I have not seen an oncology orthopedic specialist in many cancer centers.
Hope you find some pain relief soon and get treated to resolve the cause of your pain.
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Candy, I'm sorry for what you're going through. Hugs.
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S3K5- Second oncologist?? I just have 1 oncologist. My MO nurse said to stay with the local ortho doc, but I too wonder if it is cancer related will she want to deal with that. Avascular necrosis due to Xgeva, or fractures due to the cancer seems more onc related than what the local ortho deals with on a daily basis.
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MRI insurance approval done. MRI appt is this afternoon. I told ortho nurse that my onc wanted to see the MRI, not the plain films. And that I was going to onc on Monday. So they rushed the appt so I could have the MRI done. So we shall see what the MRI shows--- cancer to bone, avascular necrosis, stress fracture. We shall see.
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That’s awesome, Candy. The two times they’ve asked for stat scans for me these last few weeks, it’s taken days. I hope you get your answer. In your pocket.
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Candy hope all is going well...in your pocket.
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Hoping all goes well, Candy.
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MRI done. Follow up appt with ortho on Friday to discuss MRI results. Got disc of images for my MO appt on Monday.
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Pocket duty for you Candy on Friday I go for my MRI of liver Friday.
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Candy, glad that insurance approved MRI quickly and that you were able to have it done pronto. In your pocket for results and also for your trip to Onc on Monday. I'll be thinking of you.
Pocket dutyfor all others having tests and scans this week. It never ends!
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Cross posting. I wrote this on my CaringBridge. CT said bilateral hydronephrosis, as a reminder
Today is the day I think about giving up on the medical community. Had my testing. All is fine. This has been my whole disease since 2013.
There is something wrong, I know there is something wrong, but I keep being led in the wrong direction. It's happened at every turn of lobular breast cancer.
Today is the day I want to give in and say let cancer run its course and take me. The problem is I'm too damn strong to let it take me before my time.
Now on to more doctors' appointments and more twists and turns to find out what it is.It's very weird to say I wish I was one who had cancer that is seen and picked up easily on scans. I'm jealous of those who do.
Today I choose not to be strong but weak. I will be strong again. Just not today.0 -
KBL - Hugs. Weak days are rough. Here is to hoping you have many more strong days.
For the group, I'm looking for advice. I just found out from my EMR report that I have progression. Original single spot was on T10. I had SBRT radiation to that spot 2 years ago and have been on Femara (Letrozole) for about 2.5 years. It looks like the T10 spot is back and has moved to T11 and/or T9 plus a possible spot on iliac bone. Has anyone had a met come back after SBRT? My rad onc had said that spot would be definitively dealt with. However...it's back... I have yet to talk with my med onc (appt scheduled), but I'm starting to compile my thoughts/questions. If anyone had any other specific advice, I'd love to hear it. I've been reviewing the treatment sequence/options compiled by BestBird (thank you!!!).
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KBL, we all have our weak moments. I totally understand how hard this is for you right now. I also have slower growing mets which is definitely a positive but I have also struggled with increasing symptoms and issues cropping up despite stable scans. Personally it has made me feel like a hypochondriac. I went from never going to a doctor to suddenly seeming to be hyper sensitive to everything.
And yet, we need to trust our gut instincts. I had stable scans but my skull mets started behaving badly - SBRT took care of that but clearly things were percolating. Then, mets show up in the liver so maybe my instincts weren’t completely wrong..... Fortunately my MO is a star. He said in October, well, maybe we say we don’t believe the scans... It was me that wanted to be sure things were going sideways.
Give yourself a chance to catch your breath, dust yourself off and then keep advocating for yourself. You know your body and you know when things don’t feel right. Plus, to add to your challenges, you have a sneaky cancer. Your team needs to recognize that.
Sending hugs and a shoulder for today.
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KBL, so sorry to hear that you don't have answers. I know the imponderables are different for everyone, but empathize with the frustration of knowing something is wrong and not getting a pathway forward to address it. I hope there is some clarity soon for you and that in the meantime you 1) can get some rest from being strong....it's ok to need that and 2)push on when you are ready, that you do get r the care you need and deserve
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Thank you all. I am feeling better this morning. I hadn’t cried in a very long time, so the release felt good. Onward and upward
Sadiesservant, I said that exact thing to my husband yesterday, people probably think I’m a hypochondriac. It’s an awful feeling.
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