Bone Mets Thread
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Radiation eliminated my pain and stopped those particular mets
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Hello everyone 😊I was just diagnosed as stage 4 breast cancer with a recurrence with in my right rib number 6 after 10 years of a disease free life.
I am on my way to have a PET scan to see if there are more Mets present besides the small on found on the 6th rib during the biopsy. Very nervous more will be found. Has anyone with one known met end up with more after the PET scan.
I had an x-ray and a CT guided biopsy to identify tissue and it was breast cancer.
Hormone receptors were as follows.
Er+=100% Pr+ 100% Her2- as 0 same as my original diagnois.
Would any one of you be willing to share your treatment today? Your feelings at diagnosis and any coping behaviors and medications you take to control anxiety I am on Xanax
Thank you all AnnaMaria hugs to you all
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Hi everyone,
I just got diagnosed yesterday. Mets to the spine. 2 or 3 spots in the spinal column but bigger spot in the L5 and pelvic bone of all places. I will get a CT later to check the organs. My question is how manageable can the pain be? Right now I have pain that gets pretty bad, seems to be in my hip joint right side. But I've had it in my left side as well. It travels. Can the pain get better or does it gradually get worse? At the moment Tylenol helps quite a bit. Nighttime is hard though as I'm a tosser and turner usually. Thank you and I'm so grateful for this forum.
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Good to know. Thank you. This pain sucks.
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Question for the group - I have a single spine met that was discovered through an elevated alkaline phosphatase. How long has it taken other people to see a decrease in ALP after beginning anti-estrogen therapy (in my case Femara)?
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Greek, I could barely walk when I was Dx'd in 2016. It was agonizing, and I'd cry out in pain, but rads to the spine helped immensely. I've had more rads to the hips and other areas of the spine and sacrum because of bladder and bowel incontinence.
It's very scary at first, but you WILL get thru it. I'm almost three years out. I use Medical Marijuana, specifically CBD oil for the pain and inflammation and to help me sleep.
L
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Hi Anna Maria - I was dx a year ago with a single bone met to rib #2, which was incidentally spotted on a routine Breast MRI 15 years after my original dx. I had a pet scan and the rest of my body was clear (and remains so today). I had no pain and it had been so long so this was shocking. They did a biopsy to confirm and then we radiated the spot to kill it. I've been NED since and am on Ibrance/Faslodex, Herceptin and just started zometa.
I'm so sorry you are with us here but I promise it gets easier with time and the support of these wonderful people. Keep us posted.
Love to all
Lauren
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Thank you for that Lita. The pain is pretty bad , I cry out every now and then too. The thought of this pain continuing or getting worse was really bringing me down. 3 years is excellent keep on keeping on.
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To our new girls, welcome to the club nobody wants to be in. It's tough, but you can do it!! Hang in there, it does get better!
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GreekNinjia....you might want to consult with one of the palliative care doctors at your hospital. They have a slew of pain killers medications they are authorized to prescribe based on the type of pain and location.
I'm currently on a low dose fentanyl patch that gets changed every 3 days. Unlike some of the other pain medications, it has no side effects that I've been able to detect...and i enjoy the three days routine...most pain killers last just hours...
I have also found a daily supplement of good quality Omega 3 fatty acids to be invaluable as far as keeping inflammation down to a minimum
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AnnaMaria, my fingers are crossed for you. If only 1 met to bone you have a much better prognosis.
1 met for me. Ibrance 1 yr. Faslodex with Letrezole together instead for 1st and second year plus Xgeva. Anxiety first 6 months only. Dr says 20 years to go.
What I don't get is how this stuff creeps around the body with no clue its spreading. Am I correct in assuming that those of you found to have new bone mets didnt necessarily have pain or elevated tumor markers??? That is what dr relies on to dx progression. Yes I get scans at 6 months otherwise. And if scans don't see it 1st time around and no pain then what? My tumor markers are always pretty low. 15 to 18 now. Only 45 at dx.
Have a great day ladies
Gailmary
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Miaowmix, I will look into it with the hospital. Can you tell me how much omega 3 you usually take? That I can start right away. I may sound like a broken record but I am sooooo grateful for this community. It brings hope and information and love everytime I log on. You people are the best. Massive hug to all of you.
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Gilmary - we are similar with our single bone mets. Interesting your doc took you off of Ibrance... what was the rational?
And yes, I had no pain and no tumor marker elevation. If my rib met were lower and didn't get detected during my breast MRI last jan, I'd probably still be wandering around unaware that I was stage 4. Eventually, pain would have appeared and I would likely have started to investigate.
Love to all,
Lauren
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GreekNinjia....I buy the Omega 3 from Perricone. I take three once a day. I usually wait for them to go on sale, otherwise they tend to be expensive, BUT they work!
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Lauren. The dr felt that the antihormonals are all i need. Ibrance is a big hassle and too many side effects and he could put me back on It if my tumor markers start to rise.
What i found interesting is you rarely here of getting both letrezole and faslodex. His rationale there is that they work 2 different ways. I have been stable practically from the start.with minimal srinkage of 6+ cm lesion. He plans to go to letrezole and xgeva only in May at 2 yrs.
Gailmary
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Gilmary - your MO sounds creative... I like that in an MO. Incidentally, I saw this article this morning, which supports taking an “Ibrance break.”
https://www.dana-farber.org/newsroom/
Love to all,
Lauren
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my onc took me off of kisqal for a break since December. This month scan will determine if I go back on it. I was stable and tumors had shrunk and appeared inactive. My body has enjoyed this tiny reprieve but I will gladly go back on kisqali if need be.
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great newz, Lauren. There may be more ibrance breaks in our future. I hope this was posted around so all can see it and have even more reason to hope.
Gailmary
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Thanks Gilmary - I did post it to the Ibrance thread but I will also add it to the “breaking news” thread as well. Have a great weekend!
Love to all,
Lauren
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Great read. I'll ask my onc if that was the reason. She just said it was time to see if AI would be enough to suppress new cells
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GreekNinja
I had several bone mets on spine, sacrum and pelvic area at diagnosis. Never felt a thing except an arthritic kind of achiness in the spine only. Very mild.
I still don't have much pain after six years now. Good Luck!
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AnnaMaria
I've been on Herceptin and Arimidex for six years.. When first diagnosed, I had Taxotere and Carboplatin and Herceptin. It was rather shocking at first to find out I have breast cancer and then a few weeks later to find out it metastasized.. I didnt have too much time to think about it though. My oldest daughter was getting married and many other life events going on at the same time-too many to count. I went to an oncology psychiatrist who prescribed an antidepressant -Effexor for hot flashes, anxiety and depression. I've been on it about 5 years and it really helps -with few side effects. Sometimes, i actually want to cry to let my feelings out but because of the effexor I can't and this really bothers me.
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Lynne - I completely get what you are saying about Effexor keeping the tears and emotions from coming out strongly. I am newly on Lexapro - about 4 months now and that is exactly how I describe it too. However, I was crying constantly before and soooooo emotional and anxious and now I get teary but am not sobbing anymore. It is a relief although sometimes I do miss just having a good ol cry
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A good cry can release the anxiety, don't you think? Sounds nutty, but if I play a really sad song it helps the tears come!
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Oh not nutty at all! For me, if I sing a sad song, I can bring on some good tears
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I'm with you Joe. I'd do do it too. It wasn't so bad for me. I'm always afraid of side effects
Gailmary
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Lynn why Effexor instead of Xanax? Also, is there a difference in treatment efficacy between the hormonal drugs used for Er+?
Thanks
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AMP -Maybe this helps: Effexor is an anti-depressant and works over time to help your brain produce more positive hormones. (It also helps to reduce hot flashes as a side benefit so some time it for that too). Xanax is an anti-anxiety med that works ‘in the moment” to help calm anxiety.
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Hello AMP47, I was also recently diagnosed with bone mets (following 3 years on Tamoxifen, original stage 1dx in 2015). My onco has recommended Lupron, Faslodex, Ibrance and Exgeva. I've started the Lupron and Faslodex. We're spacing things out stepwise over the month so we can kind of track side effects, at least immediate ones.
I do this qi gong sequence every day to help with the stress, sometimes even in the waiting room!
You might find it helpful to read about somatic experiencing and a technique called resourcing. I've also used that a lot throughout my treatment.
ps-- I grew up in Oregon
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Wondering if anyone has any specific advice for starting Exgeva? Best place for injection (arm, thigh, abdomen)? Arc to the side effects? I'll be getting my first injection on the 22nd. The Faslodex threw me for a loop (OUCH), so I'm trying to head into the next one better prepared...
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