Bone Mets Thread
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Has anyone ever had hearing issues after Rads? I noticed when everyone started wearing masks that I had been lip reading and really couldn't hear anything out of my right ear. Finally I just saw an ENT and he said I could have permanent damage possibly due to the radiation I had on my skull. He cleaned them out and I can hear A LOT better but there is still problems on the right.
Other than that, I just passed 3 years with this metistatic mess and I'm thankful for it!
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Thanks Moth and Snowdrop
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Hello fellow MBCers,
My name is Teri, 64 years old, diagnosed in 2013 with stage 1 ILC ER+Her2- and eight years later here I am with MBC. I took AIs for five years after my first diagnosis and then stopped. My onc said the cancer probably broke through when I stopped taking the AIs. I was experiencing intense pain in my legs at night and an enlarged lymph node in my left armpit after the COVID shot. The drs thought it was from the COVID shot but I disagreed as that lymph node had been bothering me for weeks before the COVID shot. The biopsy showed cancer in the lymph node and a pet scan showed cancer in my bones. So I'm on my third week of Ibrance and I received my first shots of Faslodex three weeks ago. Hardly any side effects except for aches and pains which I've had for years. I'm 64 years old, married, no kids. I have nine biological sisters and I'm the only sister with breast cancer.
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Thebar...sorry to hear of your reccurance. If you haven't already you may want to join the Ibrance thread as well, it moves quickly and a lot of nice ladies in there.
As the saying goes...Welcome to the club that no one wants to be in....
Nicole
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Thebar57, it was nice to meet you in the Zoom call yesterday I’m sorry you’re here for this reason but so glad you joined us.
I was the only one of five siblings to have cancer, let alone breast cancer. I’ve had it for eight years but was only diagnosed two years ago.In a matter of a few months last year, my eldest brother was diagnosed with breast cancer, and my second oldest brother was diagnosed with renal cell carcinoma and passed within three months. Things can change on a dime, and I really hope your sisters keep a watchful eye just in case.
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Welcome, thebar!
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Deamo1 - My bone mets felt like a deep dull pain. The one's I had in my back I rarely felt but if I did it was not a zap like feeling.
Nicole - I haven't interacted with Moomala, please let us know if you hear something. I always wonder about those of us who disappear from here. I like to think it's because they are feeling better and out enjoying a life where cancer doesn't try to steal the drivers seat.
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just got results of mri mass on lumbar 1 I was stunned and was looking forward to celebrating 5 yrs in August.
Waiting on an appt for a biopsy. My husband has a work trip to Vegas and we would be back on Monday. I am not motivated to get ready and go.
I am so ignorant…is Mets a tumor ? Did any of you have a lumbar mass.
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Positive2strong - fingers crossed your biopsy shows a benign result. What did the MRI actually say? It could be other things.
Yes, a met is a tumor. It's a malignancy that has migrated from the original site of the cancer. My spine met is T11 (just a couple above L1)
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Positive - what triggered the MRI? Was it pain in that area or was it incidental finding?
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Sorry to hear about your recent imaging discoveries, TheBar and Positive....hoping that biopsies and treatment go well.
I'm facing a decision between kyphoplasty and radiation to deal with ongoing bone mets back pain I wonder if anyone has experience to weigh in on. Had rads to my back when I first started treatment in April. Still having intermittent back pain, sometimes quite severe. I also had fourth compression fracture discovered in April. Wanting to slow down kyphosis and pain, I asked spine doctor (who has screwed up before so I have limited confidence but don't know how to get him out of my treatment plan) about kyphoplasty and he was enthusiastic (seemed to think that heat of the cement would even kill some of the cancer cells, which I doubt). So with my MO's blessing I'm having an MRI to assess this today, and a consult tomorrow. Meanwhile, my second opinion onc at a cancer center had recommended further radiation to deal with pain from my ribs....that has decreased but my onc here still thinks further radiation for back pain might improve QOL while the Ibrance/Letrozole slowly (hopefully) decreases tumors in my back. RO is willing to go ahead with some targeted rads (with "BBs"? which I guess are markers to better target painful places) but thinks kyphoplasty is a BAD idea because it has a very uncertain possibility of improving things and could make my already fragile back worse. I tend to find RO to be the most trustworthy of my many physicians....but MO wants me to at least get the consultation (and was glad to have an MRI for some other purpose that could also give us an early view of how treatment may be affecting spine mets....he doesn't want to order his own imaging until August).
So this is too long but, my questions are, anyone have good/bad experiences with kyphoplasty? Also, I've seen some people's Oncs have them go OFF Ibrance while having radiation. I think that starting Ibrance (at max dose) DURING radiation in April may have contributed to the extreme decline in my WBC/Neutrophil counts while on my first cycle of 125. My WBC already went down with radiation and the further decline on Ibrance caused a 3 week break and decrease in dosage between the first two cycles (just finished Cycle 2 , waiting for results from blood work done yesterday). I have planned a family trip to California in July to see our daughter who lives there and very belatedly scatter my parents ashes in the Pacific Ocean near where they used to live, and I don't want anything to get in the way of that.
I wonder: should I just wait 'til I get back for either treatment? Or, as all the doctors seem all too confident about, trust that I won't get severe neutropenia again before or while I'm in California? Sort of hoped the radiation would improve my back enough to do some longer walking/hiking than I usually can, but maybe the risks are not worth it. Maybe I should just talk to palliative care about drugs (went off all of the NSAIDs and Ibuprofen I was taking when my pain was at its worst and am not sure if it's ok to go back on them with the cancer drugs I'm taking. RO keeps pushing Tramadol but I just don't want to do opioids and have enough trouble with constipation because of anti-nausea drugs I take occasionally). Thanks for any thoughts.
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Prariesea, I've never had the kyphoplasty. You say you trust your RO the most of all your doctors. Your comments seem to sound like you are leaning towards getting the radiation, altho you want to get the MRI now to see what it shows.
Talking to palliative care is a good idea just to see what they say. Are you saying you use no pain meds currently? I would think NSAIDS and ibuprofen are okay to take with Ibrance. I can understand your reasons for not wanting tramadol. But NSAIDS and ibuprofen might be enough to help you have a more comfortable trip to California.
I know a lot of women worry about going off Ibrance for a time, but it is not Ibrance that is preventing bc from spreading, it is only making the hormonal drug you are taking work better. What hormonal do you take? If your white blood cell count drops, you continue with the hormonal, so you are still getting treatment.
It sounds like your goal is to take your California trip and have your pain under control. The kyphoplasty remedy sounds like it could go either way, good or bad, and that might interfere with your trip. You have a lot to consider. Keep us posted on how things are going.
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Thanks Divine. Your perspective is helpful. I take letrozole (Femara) with Ibrance. I suppose I could suggest going off Ibrance for a cycle, but having just started treatment I think Onc is going to not want to take such a long wait between cycles.
Complicated now by most recent blood results....neutrophils are way down again after 3rd week on 100 dose of Ibrance. Frustrating as it took 3 week to come back up last time. I will have to talk to them about how to work this out. Onc was so sure it wouldn't happen again, sometimes I find their over-confidence really annoying......
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all the Dr said is that I have a mass on L1 and I need a biopsy
I was stunned and didn’t know what else to ask
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it started In Jan that when I sat down for awhile and then would get up my right leg didn’t work but once I got going I was ok
Then it just got worse with pain in my right leg when I walked. But sitting and sleeping no pain now I have some pain sleeping. I thought it was sciatic as my husband has always had back problems and then broke his neck 3 yrs ago so I do all the lifting etc
My husband insisted I see a Dr. and Of course he said I needed an mri I found a stand up MRI and I never thought this
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thank you so much for respondin
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I am not sure if this is the correct place to put this.
What is the longest someone has had bone-only mets? are there any theories or research on why some people have bone-only involvement for years, or it never moves on from bone-only involvement for some people?, or conversely why it moves on from bone very quickly for some people is it all random maybe?
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Sunnidays, I have been bone only since Feb 2017, so 4 yrs and 4 mo.
Positive2Strong, wishing you the very best!! Hang tough, girl! Thank goodness for your husband.
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sunnidays, certainly there are what are called “outliers” who live many years with metastatic breast cancer to the bone without further spread. There are other members of the forum that can explain more clearly and thoroughly than I can what some reasons are why this occurs, and when they see your question, I’m sure they will explain in better detail. For example, some women have a slower, lazier cancer.
On the other hand, yes, there is a randomness about it.
I found a lump in my breast in Dec 2010, officially diagnosed the following month metastatic to the bone and have remained that way; that makes it 10+ years so far.
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thank you divineMrsM and Joynerl
I am waiting to get my biopsy appt
It is hard to keep negative thoughts out of my head
I drove to Vegas yesterday, sitting I have very little pain, but I barely can walk. Last night my husband got me a wheel chair to get from the car to our room.
He had a business trip here. The pain of walking makes me drown in all the what is to come and I am sick to my stomach and really can’t eat or sleep much…..this group helps me so much
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sunnidays, we don't have a good understanding of the mechanism of initial metastasis or its subsequent spread. So we just don't know why some people's cancer is very indolent and others' spreads like wildfire. Grade is definitely a factor. And while bone only is considered to be the most optimal, there are pts whose cancer progresses rapidly. I've read some oncs speculating that these were maybe not really bone only - they had undetectable visceral mets at prsentation as well. Also bone has a very good blood supply so blood transmission of the cancer can easily occur but we don't seem to know which types spread more by lymph versus by blood.
There is a study looking at the 2010-2015 SEER data set (which would be prior to CDK4/6 for hr+ and immunotherapy for tnbc - those shifted the curves slightly). You can see some of the survival curves on Table 3. Hormone status & location of mets do matter a lot. Bone only are the most favourable. So you do get a lot of outliers. https://bmccancer.biomedcentral.com/articles/10.11...
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Hi, I'm new to this thread. I was diagnosed with metastatic cancer to the spine 3 months ago. It has been sort of a shocking train wreck. It was almost 3 years after first diagnosis, which was early stage and I was finally trying to move on. I had been trying hard to get in shape, etc. and lost about 40 pounds but felt like I was losing ground and kept having a back ache. I blamed it on workouts, bad chair (miserable desk job), pillow, stress, etc. Oncologist PA recommended therapy and massage but did not suggest any imaging. I went to a PT, who felt my spine and said something was really off and I should ask my doctor for an x-ray. They did a regular x-ray and didn't see much, no fractures just osteopenia. My back ache kept getting worse and I was having a lot of muscle cramps. A couple of weeks later I was sitting at work and tilted my chin down trying to stretch and felt ZAPZAPZAP down both legs and my toes started to go numb (Lhermitte sign). I was having a little denial issue because I have had to meet max out of pocket 5 years in a row, so I didn't go to the ER. I went to PCP the next day and they ordered MRI brain and lumbar spine (but not thoracic because already did the regular x-ray). Insurance caused a delay to "prior authorize," and then scheduling was delayed because of the virus, etc. Within a week I was half numb from my toes to my ribs and losing motor control of my legs. Both MRIs were negative and I was referred to a neurologist. I couldn't take it any more and went to the ER. The thoracic MRI showed T6 completely filled with tumor and severely compressing the spinal cord. There was also a pathologic fracture of 7th rib. I was taken for emergency surgery, T6 corpectomy with fusion T4-T8. I have been working hard with PT trying to recover as much function as possible, plus trying to adjust to the reality of having stage IV cancer. It's crushing.
positive2strong and everyone else here, I can relate and send you a hug.
Distraction helps me deal. I like watching explore.org cameras with all the animals doing their thing and being happy.
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Positive 2Strong- I had a lot of pain leading up to my diagnosis. I had to ask about getting radiation and felt lucky that I could get in quickly. I had 5 sessions of radiation and it took several weeks after that to notice a big difference. During that time, I took Aleve and Tramodol for pain which helped a lot. Now I take 1 Aleve and 1 Tramodol a day. Radiation helped me regain physical ability I had lost and I am exercising again the same amount of time as before (maybe less intense, though).
MKestrel - I, too, thought I had hurt myself exercising. I waited before seeing the oncologist. If you haven’t gotten a treatment plan from your oncologist yet, I think it will be a relief to get a plan. Hopefully some radiation (there are different methods) will be scheduled.
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Yeah I did have 6 weeks of radiation. It does help, and I think I am going to try getting back on my bike. It takes brutal force, but I feel better if I try to keep moving.
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Sunnidays like Joyner I've had bone mets for 4 yr 2 mo. I did Herceptin , Kadcyla Taxol and rads in hip .spine., sacrum ,femur, acetabellum. PT after has helped be regain strength. I was blessed with a very proactive oncologist and PET scans that picked it up early. Now I'm being denied PET scans so now I get MRI no contrast.& Bone scans. Pain has been manageable. I'm very lucky. I wish you well
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thank you for sharing. I go for a ct scan Monday for my liver. I am having a hard time facing this. I hope to hear more from you.
Linda
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I can't believe that I find myself back here. I was so hoping that I would not need this sight for a very long time. I just found out last week that I have a compression fracture to my T11. Turns out I have a met there and one on my right pelvis. Next week I am scheduled for a CT guided biopsy and was wondering if anyone has had one of these and can give me some insight into what is going to happen at my appointment. I'm really just reeling from this and not sure how I am feeling.
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Hi carolina_girl - sorry you find yourself here. I think you're the 4th of us 2017 diagnosed to have to return like this. It's awful when you first find out, really like a gut punch.
I didn't have my bone met biopsied so can't help with that but I'm sure someone will be along soon. I just wanted to wave hello.
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Hi Carolina Girl 63 - I had a bone biopsy from the sacrum, but I am not completely sure if it was CT guided, but it probably was. Had to have been guided by something! At the hospital, they numbed the area, gave me relaxing medicine and did the Biopsy while I was still awake. It was a simple procedure for me. I was loopy afterwards and slept for several hours at home. All this did was confirm that it was hormone-driven the same as before.
I have been prescribed Ibrance, Letrozole and Xgeva. You might be prescribed something similar. The Ibrance and Letrozole are taken by pill at home. The Xgeva is a bone-building drug I get by injection once a month at the cancer center.
It's a terrible shock, I know. It took me a while to deal with this, and I think I felt better mentally once I had a plan in place. There are several different treatments available for bone mets, and many people are able to get it under control and carry on with their lives.
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Carolina girl....welcome to the club that none of us want to be in. There is a silver lining in your cloud...sounds like you are Bone Mets only....try to focus on the positive...having bone mets only and no organ involovement ...is a positive... Hope things go well with scans and you get clear answers.
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