Bone Mets Thread
Comments
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thanks Jens and Bliss - that is the same as my MO says too. I just of course get nervous when I read the actual scan results which are usually confusing and I know there's an art to interpreting them that probably takes years of clinical practice to master.
I can imagine a course for MO's called: How to Keep Calm and Carry On When Interpreting Radiology Reports.
Lol 😂
Jens - how'd it go yesterday? You have been in my thoughts ❤️🧡💛💛
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Hi Love from Philly
I don't know how to answer your question directly, but I do sometimes take reports into my appointments. I highlight the section I have the question about and ask the doctor to explain. I am a complete nerd. I have a good relationship with my radiation oncologist, and he is willing to schedule with me at anytime to review scans. I do believe I have an awesome treatment team.
I hope this is helpful,
Mary
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thanks Mary! That’s a good idea! I def will be doing that on Monday at my monthly MO appt.
unfortunately my MO will be out of town, but hopefully the NP can speak sensibly about it all
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Hi everybody - Philly - love your term "the beehive"...
I can't add anything intelligent on your scan questions. My MO is also pretty laid back about them.... as you remember, she made that huge mistake last year that almost made my world come crashing down. I have scans - CT and Bone, next month and already getting a little anxious. Candy - I got Xgeva every six weeks for the first 4-5 years and recently changed to quarterly without any explanation.
Hugs to all,
XO
Andi
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Pat-
I had mets to my skull and they did heal with treatment. Hope that yours will too-scary stuff.
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Woah! This looks extremely promising for us. It doesn’t say if it’s been used in human models yet but gives me so much hope. I think I’m going to email the team and ask about trials
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Jen, this does look very promising. Thanks for sharing. I'm very interested in what you find out about human trials.
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Yes this does look very promising and leaves me feeling hopeful for so many if not most of us. Best thing is it shouldnt be long before it goes to trial. I wonder how long they would decide to test it to see benefit. I understand so many of the new drugs only gives us a few more months at best. Perhaps like ibrance they will find it successful enough to use without knowing just how wonderful it might be.
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Thank you posting the article Jen. I hope they start the trials soon. Keep us posted
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yes good article Jens! I saved the research article in on my desktop so I can read it more thoroughly.
I got my CA 15-3 results back and they are 68. I don’t know why exactly but I feel this is good news. I guess I was worried it was gonna be higher. The last time they looked at them was when I was diagnosed and they were over 200. I know the numbers can be all over the place and we haven’t really been tracking then, but I was worried they’d be higher.
I met with the NP cause my MO was out of town. If he wants me to scan again, he’ll let me jnow
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My doc wants a bone scan and CT, just to keep a check, nothing wrong or anything. Of course the insurance said no. uugg.
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Philly- seems like just the fact that your CA 15-3 is lower is the good news. Mine have never gotten out of the 1000s, but, it is the trend , they are down 40% on AA, so that is good. When mine go up several times in a row, that seems to be meaningful, not the exact number. Some people with extensive mets have normal TMs, and some like me are off the charts, even when the treatment shows little disease. The specialist at UCSF couldn't explain it.
Cheers for 68!
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hi NKB, yes it sounds like everyone’s all over the map with TM numbers.
I like a low number, even though I know it doesn’t necessarily mean anything lol 😂 I’ll take what I can get!!
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Peaches, what kind of insurance denied scans for a stage 4 patient. Is the Dr requesting them too soon since the last scans? Hope that's all it is.
Re tumor markers. I know the tests aren't reliable indicators for everyone, only like 80% of us. I take that to mean my numbers may not go up even if there is progression. My numbers never exceeded 100. I haven't had progression since discovering my bone met. Numbers are still good. A score of 1000 sounds really scary and 68 would be pretty high for me but we know its the trends that mean more. even so that sounds out of range. Sure must add to the stress for you gals, especially before scans. I wish I could do something to help.
My recent back pain is mostly gone after a massage yesterday. So I'll worry no more about the scan this Friday. Worked hard in the garden today. Felt good. Hope I didn't over do it again.
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Hi Peaches, I get a lot of stuff rejected by insurance, but somehow my MO's office magically makes it happen. Instead of dealing with insurance company, can't MO's office make a case for why it is the standard of care for you to have a regular scan?
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I know for me, the MO's office needs to get pre-auth for every scan. They routinely deny them and then my doctor has to do a "peer to peer" conversation with the ins co. doctor to get the approval.
Every. Single. Time.
One time I got a denial letter in the mail but that was before the peer review. Usually I do not get notified of the denials.
They require all "advanced imaging" to be pre-approved, no matter what the diagnosis is. Of course what you say makes sense, but it's all about putting up those roadblocks.
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That's exactly what happened, I called the hospital pre-certification department and told them about my denial letter and they got it taken care of. My MO is a scanner, he wants me to have CT's, bone scans, and of course Echo's every 3 months.
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Hooray, Big Peaches, glad it is straightened out for you! (My scan is next week - fingers crossed) Doing my deep breathing and anti-anxiety meditations.
xo
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Good bone scan results today—-no evidence of active disease. Relieved and grateful. Having some survivor guilt today after seeing Lita has passed. He Dx was six months after mine. I have loved her tough as nails approach to this disease. RIP friend. Glad you are free of the unrelenting pain.
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Iwrite- Woohoo on the good bone scan !!!!!
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Good news lwrite!
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Iwrite congratulations!!!!!!!!! Celebrate the good news!!!!!!
I get the survivors guilt. Why do some of us keep on truckin on while others do not make it. It is a great mystery - difficult to wrap the mind around.
Hugs,
Philly
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Iwrite- congratulations! I also understand your feelings of survivor's guilt. we need to study the long running successes to help us figure out the formula for everyone.
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thats great, Iwrite! Celebrate your good fortune! My friend also dx just 4 months after me has already died. Survivors guilt? not me. Now I'm scared crazy. It makes it all so much more real. I remind myself all the time now how ours and our tx were different. There's no 2 ways about it; mbc messes with your head.
My scans are tomorrw and this is the first time I won't get results within 3 days. In the future I'll be sure to schedule dr first then arrange scans to be done just before. I think I'll let the new young scheduler know the anxiety this causes. 14 days even 7 days is unnecessarily long.
Its been 3 mos this time cause at last scan he saw a cyst on liver and now has to check thats all it was. Markers have been great.
At quilting this afternoon the gals were complaining about having to go for mamos every year. Till I said I have to go for scans 2 to 4 x every year - minimum. Oh to be so lucky. They have no idea.
GAILMARY
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Very happy news, Iwrite!!!
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Gailmary- Hoping for a good scan for you. And that the liver cyst is nothing. The staff at our MO offices should know the anxiety we have over our scans. But for them it is just a job to do. Moving the patients thru like herding cattle. No, others do not understand what we go thru. I don't want anyone to go thru this, but I wish others could understand what I am going thru.
I am already getting nervous. My scans are due mid Oct. My TM's have slowly, steadily risen the last 4 months. And I am having more spinal pain. And I am 2 years into the MBC diagnosis, so I wonder when things are going to change.
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thank you Candy. I'm 2 yrs out too. Scan results on the 7th. Not so anxious now. I dont know about anyone else but I can see the computer image while they are scanning me on the bone scan machine. I didnt see any hot spots. I knew they just got a new machine and of course the radiologist needs to look at it but is it too much to hope for shrinking if not ned? I never trusted what I saw there. For all I knew they have brought up an old scan for comparison. And then
When the scan was done the tech wheeled the monitor toward me to look and said it looks better than the last scan but of course the radiologist needs to read it. . .
GOD bless her.
I have some spine pain too. PA said its arthritis. Likely from meds. To mean that means it could clear up if switching off current meds causing it. One can always hope.
Gail Mary
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gailmary, I wish mine would have done that, although I did sneak a peak and it looked the same as last time to me.
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how were your Mets found, ladies? My mom has a lump on her lower back of the left side (it's on muscle.. she had a lipoma/cyst there in the same spot but had it removed 7 years ago). Anyone had something similar and found Mets? She has no pain and lump has been the same size for the past week and not grown.
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Thanks everyone! It’s such a relief to get good results. Gailmary...hope your pix turn out well!
I do love the techs who tell us we look “good” so we don’t worry so much.
No lumps prior toDx for me. I felt great and then “poof” stage IV.
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